Family Caregivers Unite!: Recent Episodes
Dr. Gordon Atherley
Family caregivers are the people who provide care to partners, parents, children, brothers, sisters, cousins, friends, neighbors and even co-workers. They are the people who provide care when everyone else has gone home. They are the people who organize the functioning of the home for the person with special needs, and for the family as a whole. They are the coordinators of care, the managers of appointments, the preventers of loneliness, and the makers of decisions even to the point of Power of Attorney. And they are so often people who themselves are burdened with their own health challenges and who may be in only marginally better health than the persons to whom they are providing family caregiving.
Angela Geddes is the Assessment Coordinator at the FASD London Region Assessment Clinic, http://www.fasd-londonregion.com/. Darlene --. is an Early Childhood Educator and Homeschooling Mom of two who’s worked with children for the past 24 years in formal and home childcare settings. They talk about their lives, careers, experience with FASD children, work and responsibilities. They highlight the challenges that FASD creates for children, for their families and their family caregivers, and for the providers of social and healthcare services. They identify what they see as the most important needs and services for helping meet the challenges created for children living with FASD, for the families and family caregivers, and for providers of healthcare and social services. They say what more they would like to do and see done to improve services for FASD children, their families and their family caregivers.
Marni Soupcoff, a lawyer, is a newspaper columnist and Executive Director of the Canadian Constitution Foundation, and previously served the Institute for Justice. She describes her work and experience with family caregiving. She explains autonomy and highlights the challenges it creates for families and family caregivers caring for family members with mental illness or brain damage who may be unable to make decisions in their own best interests. She discusses the challenges created for privacy and social justice laws and for medical practice by autonomy when its lore is applied to individuals living with mental illness or brain damage. She says what more she would like to do and see done to advance understanding of autonomy’s implications for individuals, their families and family caregivers. She shares her message for family caregivers without substitute decision-maker who encounter difficulties getting their alerts listened to by psychiatrists and other healthcare professionals.
Dr. Gordon Atherley, docg@familycaregiversunite.org, holds the British equivalents of the North American MD and PhD degrees, and LLD, Honoris Causa. He highlights his own experience of bullying within a Canadian organization focused on mental illness. The bullying caused harm and loss to many people who were associated with the organization, who depended on it, or who trusted it. He believes that the bullying reflected Narcissistic personality disorder, as defined by various expert organizations. He analyzes his own experience of being bullied by a healthcare professional and says why he advocates for high-quality research. He details challenges created for family caregivers and their family members, and the supports that they need. He says what more he’d like to do and see done, and by whom, to promote prevention of bullying by healthcare professionals and support for people who are bullied. He shares his message for people who have been bullied by healthcare professionals.
As Chief Advocate at K&A Inc., http://kealeyandassociates.com/, Marc Kealey is a leading voice for transformation in health care. He talks about his family, the experience of being bullied, the ways the bullying occurred, and its effects on his family. He says as much as he can about the apparent motives of the bullies. He discusses bullying, especially as it affects families, in healthcare, politics, and internet safety, sectors in which he has wide professional experience. For these sectors he explains what needs to be done to counter bullying that does or could occur, especially as it does or could affect families. He says what more he would like to do and to see done and by whom to counter bullying and its effects on families that do or could occur in healthcare. He comments on the helpfulness of VoiceAmerica`s talk show Family Caregivers Unite for people who have experienced bullying.
Craig Lewis is a Certified Peer Specialist living in Massachusetts, http://www.betterdaysrecovery.com/. He’s struggled immensely throughout his life, but he’s successfully transformed it into a life of wellness. He talks about his life, career as author of ‘Better Days – A Mental Health Recovery Workbook', and his personal experience of being bullied. Drawing on his experience and of others he discusses the forms that bullying takes and how bullies bully. He talks about resisting bullying, what he think needs to be done to improve prevention of bullying and of protection against it, and how people who are being bullied should respond. He explains other ways in which people who are being bullied should be helped. He says what action he would like to see by the communities of people living with mental health challenges to help individuals living with mental health challenges deal with bullies. He shares his message about bullying for people living with mental health challenges.
Joryn Jenkins is a trial attorney with 36 years of courtroom experience, now in private practice at Open Palm Law, http://openpalmlaw.com/, in Tampa, Florida. She discusses her career and her law firm ‘Open Palm Law’. She explains Collaborative Law and highlights its principles. She talks about the experiences of divorcing couples, their children who are living with persistent disabilities, and their families. She explains the ways in which collaborative divorce works to help manage or overcome the challenges she’s mentioned for mothers, fathers, their children living with persistent disabilities and their families. She says what more she would like to do and to see done to promote collaborative divorce as a positive change for mothers and fathers and for their children who are living with persistent disabilities. She comments on internet radio as an opportunity for family caregivers to discuss their experiences of divorce when a child is living with persistent disability.
Dr. Marcy Darnovsky is Executive Director of the Center for Genetics and Society, http://www.geneticsandsociety.org/. She describes her career and the Center’s work. She explains human gene editing, the ways it could be used for medical treatment and research, and the pros and cons. She explains germline gene modification and the Center’s position on its benefits and risks. She highlights policies on human germline modification in influential countries and identifies the main differences. She explains why the prospect of human germline modification is so controversial. She says how well she thinks North American would-be parents and family caregivers understand human gene editing and human germline modification, what more she would like to see done to improve understanding of human gene editing and human germline modification, and what more governments should do to improve information flows to parents, would-be parents and family caregivers, researchers, and the medical profession.
Rob Gain, lawyer, joined Koskie Minsky’s Class Actions group, http://kmlaw.ca/lawyers/?practicearea=57, in 2014 after practicing at another leading class-action law firm. He describes his career and experience as a lawyer especially in class actions, and the work of the Class Actions group. He says what a class action and its stages are. He explains the things that lead to class actions, what these seek to achieve, the decisions expected from the Court, and the possible outcomes and implications. He highlights the broader outcomes of class actions, and the implications and for whom, and out-of-court settlements. He explains what people have to do and decide for themselves if they are interested in launching or joining a class action. He explains what normally happens to the evidence that’s been submitted to the Court once a class action is over. He discusses the influence of class action suits on governments in Canada.
Jane De Pauw lives in Sherwood Park, Alberta, Canada, with her husband and two children who were adopted through the Alberta foster care system. Sylvie Hebert was born in Buckingham, Quebec, Canada. She and her husband started their own family and then set up their own medical foster home. They explain the Adoption Society of Alberta, http://www.adoptionabi.com, and the support it provides for parents who have adopted children. They discuss the experience of adoptive parents. They highlight what they each see as the challenges faced by parents when the children they have adopted have special needs related to mental health disabilities and physical health. They explain the ways the Adoption Society’s support helps overcome the challenges with disabilities such as fetal alcohol spectrum disorder who are living at home and when they also are at school. They say what more they both would like to do and see done to promote the Adoption Society of Alberta.
Kirk Pion is Vice President of Design & Development for the UnitedHealthcare Innovation Centers of Excellence. Dr. Vidya Raman-Tangella, a physician, heads UnitedHealthcare’s Innovation Center of Excellence. They describe the company, UnitedHealthcare, http://www.uhc.com/, and explain their work in innovation. They discuss issues and challenges experienced in America by caregivers caring for aging or disabled family members, and say why UnitedHealthcare’s Solutions for Caregivers are needed. They explain the ways in which the needs of American caregivers caring for aging or disabled family members' needs are being successfully met by UnitedHealthcare’s Solutions for Caregivers. They discuss gaps that caregivers may be experiencing, their feedback, and what is being learned from caregivers by UnitedHealthcare. They explain where United Healthcare is headed with Solutions for Caregivers, why it should move forward, its other programs, and why it is OK for caregivers to ask for help.
Mark Courtepatte is co-chair of the Hamilton and Area Parent and Caregiver FASD (Fetal Alcohol Spectrum Disorders) Support Group, http://www.hamiltonfasdsupport.ca/, and one of the organizing members of the Youth and Sibling FASD Support Group. He describes his work, the experiences of FASD that his work has created for him, and the Groups’ support that’s provided to school children, and their families and family caregivers. He discusses the challenges created by FASD for children beginning their lives as school children, changing from children into teenagers, and completing school and moving on to adult life. He explains the ways in which support helps school children, their families and their family caregivers overcome the challenges. He says what more he wants to do and to see done, and by whom, to promote support for elementary and high-school children living with FASD, and for their families and their family caregivers.
lban Maino, who is based in Portland Maine, has 25 years of experience as a film director and producer. He refocused his expertise on dementia when he learned that his grandmother was diagnosed with Alzheimer’s disease. He talks about his career and says why the diagnosis of his grandmother’s Alzheimer’s disease caused him to change his career so decisively. He explains the ways in which he provides Memory Lane TV Therapeutics, http://memory-lane.tv/, for dementia. He discusses Memory Lane TV’s use of techniques of reminiscence, story-telling and the sense of smell. He explains Memory Lane TV’s use of customization, musical sessions and nature sessions in films. He shares his ideas for expanding Memory Lane TV, the types of help he is looking for and who he wants to provide the help. He shares his message about dementia care by Memory Lane TV Therapeutics for Dementia.
Dr. Éthelle G. Lord, Founding President of the International Caregivers Association, www.icareassoc.com, discusses improvements she wants to see in dementia care, the main features of the Discus Dementia Home, and how it will help in bringing the improvements. She explains how the Discus Dementia Home Model of Care and Social Community supports individuals living with dementia, and their families and family caregivers. She talks about care partners and how are they trained to support the individuals. She highlights how the social and community support takes account of culture and language of individuals, their families and their family caregivers. She explains the factors to be considered when a Discus Dementia Home is suggested for a particular region. She says where she is considering setting up Discus Dementia Homes and how far along these are, what types of developers or investors she’s looking for, and what help she wants from them. She shares her message about dementia care.
Michael Crystal is a partner at the law firm of Spiteri & Ursulak LLP, where he currently leads the class action group, http://crystalcyrlaw.com/. He explains difficulties faced by lawyers when clients and third parties have needs beyond the scope of therapeutic jurisprudence, what he means by therapeutic jurisprudence and healer, and what attracts his interest. He explains with examples ways in which the role of healer can assist lawyers, and their clients and third parties who have mental health needs that may be beyond the scope of the justice system even when criminality is involved. He highlights with examples what ‘community’ means for clients and third parties who have mental health needs that may be beyond the scope of the justice system even when criminality is involved. He says what more he would like to do and see done to promote understanding of the concept of the lawyer as healer in the law profession’s work in of the justice system.
Dr. Terry Coleman was a police officer for nearly 40 years including ten years as a chief of police. Subsequently he was a Deputy Minister for the Saskatchewan provincial government with responsibility for policing and corrections. He describes his current work as a Public Safety Consultant, his research, and his career in policing and what he learned from it. He identifies what he sees as the most challenging of the challenges created by serious mental illnesses for police themselves, the people with whom the police become involved because of erratic and dangerous behavior, and for family members who also become involved. He describes what he sees as the most successful ways for helping overcome the challenges. He says what more he would like to do and see done, and by whom, to promote better understanding of the challenges that serious mental illnesses create for police and people with whom the police are involved.
Chris Summerville is a director of the Mental Health Commission of Canada. Debbie Sirota is a single parent of Tamara, aged 24, who lives with schizophrenia. They discuss services for persons with schizophrenia and their family caregivers, identify challenges the services respond to, and explore experiences. They examine the role of the family caregiver in the various stages of schizophrenia. They discuss the ways in which family caregivers become eyes, ears and voice for the persons they are caring for, and explore the special challenges this responsibility creates for family caregivers. They talk about quality of life for persons with schizophrenia and their family caregivers. They speak frankly about situations in which persons with mental illness suffer from depression, experience stigmatization, and get into trouble with the law. They identify the things that make the sun shine for them personally. They say what changes want to see to bring better support for family caregivers.
Tammy Lambert is diagnosed with schizoaffective disorder and is coping with delusional symptoms and mood instability. Sherri Matsumoto, who now lives with schizophrenia, was first diagnosed with mental illness as a teenager, but her first diagnosis was not schizophrenia. They highlight their own experiences of living with schizoaffective disorder and schizophrenia. They talk about their work creating hope for people living with schizoaffective disorder and schizophrenia. They discuss the challenges faced by people and their families living with schizoaffective disorder or schizophrenia, and they explain the ways their work helps in overcoming the challenges. They say what they would like to do and see done by the Schizophrenia Society of Canada and by Schizophrenia Community Radio to promote the work they are doing.
Ernie Bart is a member of the Board of Artbeat Studio, http://artbeatstudio.ca/. Lucille Bart is Executive Director and co-founder with their son Nigel, diagnosed with schizophrenia at age 19. They describe their personal experiences as parents of a son living with schizophrenia. They explain Artbeat Studio’s work with various forms of art, and the work of their son as Studio Facilitator of Artbeat Studio. They identify what they see as the most challenging of the challenges faced by individuals living with schizophrenia and by their families and family caregivers. They discuss the ways the artistic creative endeavour supported by Artbeat Studio brings mental health healing and empowerment that helps overcome the most challenging of the challenges they’ve identified. They say what more they would like to do and see done and by whom to promote artistic creative endeavour. And by the Schizophrenia Society of Canada and Schizophrenia Community Radio.
Elyn R. Saks is Professor of Law, Psychology, and Psychiatry and the Behavioral Sciences at the University of Southern California Gould School of Law; Adjunct Professor of Psychiatry at the University of California, San Diego, School of Medicine among other appointments. Dr. Lisa Doupe is an MD and a Fellow of the American College of Occupational and Environmental Medicine. She is a General Practice Psychotherapist specialized in care of persons whose high-risk behaviors involve them with the justice system. They discuss autonomy for persons with psychosis-related and other mental illnesses, how questions of autonomy arise, the importance of autonomy, the idea of autonomy shared with family caregivers, and key safeguards, such as the person’s freedom to change their minds about sharing autonomy. They discuss electronic health records’ impact on persons’ autonomy. They say what more they would they like to see done to promote autonomy and shared autonomy with appropriate safeguards.
Dr. Xavier Amador, the Founder of the LEAP Institute, is an internationally renowned clinical psychologist and leader in his field. He describes his research, personal life and professional experience. He explains LEAP (“Listen-Empathize-Agree-Partner”), its focus on relationships, and the purposes he saw for it. He discusses the challenges created by schizophrenia for individuals who live with it, for their families and family caregivers, and for providers of medical treatment for schizophrenia. He explains how LEAP helps in overcoming the most challenging of the challenges. He says what more he would like to do and see done to promote understanding of the value of listening, empathizing, agreeing, and partnering in schizophrenia. He says what more he would like to see done by the Schizophrenia Society of Canada to promote understanding of the value of listening, empathizing, agreeing, and partnering in schizophrenia.
Dr. Pierre Chue is Clinical Professor in the Department of Psychiatry at the University of Alberta, Departmental Head for Addictions and Mental Health, Alberta Health Services, and Consulting Psychiatrist with Telemental Health Services in the Province of Alberta. He describes his career as a medical researcher. He explains what is meant by “injectables”, “long-acting injectables”, and “antipsychotics”, and how these are used for medical treatment of schizophrenia. He explains the ways long-acting injectable antipsychotics address the challenges created by schizophrenia for individuals who live with it and for their families and family caregivers, and for the medical treatment of schizophrenia. He identifies challenges that persist. He highlights current research that addresses the main persistent challenges. He says what more he would like to do and see done to promote understanding of the value of long-acting injectable antipsychotics in the medical treatment of schizophrenia.
Florence Budden is a mental health nurse and nursing instructor at the Centre for Nursing Studies in St. John's Newfoundland. Ryan Clarke, a lawyer, founded Advocacy Solutions, a business providing a voice to organizations and individuals through the development and implementation of impactful advocacy strategies. They outline their careers and their work especially as it relates to mental health. They identify what they see as the main challenges faced by individuals living with schizophrenia and by their families and family caregivers when they become involved with governments, using criminal justice systems and access to medications as examples. They discuss the ways in Canada a national organization devoted to schizophrenia could help overcome the challenges. They say how they would like to phrase questions for the new federal Health Minister to ensure that the Schizophrenia Society of Canada is recognized as Canada’s national organization devoted to schizophrenia.
Catherine Latimer has been the Executive Director of the John Howard Society of Canada, www.johnhoward.ca, since 2011. Dr. Chris Summerville is CEO of the Schizophrenia Society of Canada, www.schizophrenia.ca. They explain their own work and the focus of their organizations as it relates to decriminalizing mental illness. They identify what they see as the main challenges facing individuals living with mental health disabilities, and for their families and family caregivers, which result from involvement with the criminal justice system. They describe what they see as the ways in which a national policy for Canada could help overcome the main challenges they have identified. They highlight what they see as the challenges that need overcoming if a national policy for Canada is to be created, say what they see as the ways in which a national policy for Canada could be created, and offer immediate suggestions.
Ryan Clarke, LLB, founded Advocacy Solutions, http://www.advocacysolutions.ca/, a business committed to providing a voice to organizations and individuals through the development and implementation of impactful advocacy strategies. He explains his business, what advocacy involves, and what he means by providing a voice through advocacy. He discusses the ways in which providing a voice through advocacy is used, generated and positioned in healthcare and in mental healthcare, and the trends. He identifies the challenges associated with providing a voice through advocacy when such voices are used in connection with serious mental illnesses, such as schizophrenia. He says what more he thinks the Schizophrenia Society of Canada could do to reach healthcare policy makers and politicians, mental healthcare professions, and the general public with the advocacy it promotes.
Dr. Chris Summerville is CEO of the Schizophrenia Society of Canada, www.schizophrenia.ca. Marni Soupcoff is Executive Director of the Canadian Constitution Foundation, http://theccf.ca/, a registered charity that defends the constitutional rights and freedoms of Canadians in the courts of law and public opinion. They describe their work with their organizations and the services these provide. They explain impairment of decision-making that occurs in schizophrenia and in the wider world of individual Canadians and their families, and the challenges that are created by these occurrences. They describe what they see as the most effective ways of responding to the challenges they’ve identified. They discuss laws and systems, and the changes, if any, they think are necessary for improving the ways autonomy operates Canada’s in mental healthcare systems and the wider world of Canadians and their families, and say whether improvements could be achieved by wider collaboration among experts.
Dr. Chris Summerville is CEO of the Schizophrenia Society of Canada and Executive Director of the Manitoba Schizophrenia Society. He explains recovery in schizophrenia, and what a caring community is. He describes the work of the Schizophrenia Society of Canada as it relates to recovery in schizophrenia. He highlights objections to the very idea of recovery in schizophrenia. He explains how the objections create challenges for efforts in erasing fear of schizophrenia, in eliminating stigmatization, discrimination and abuse, and in relieving the excessive burden on family caregivers caring for family members living at home with schizophrenia. He discusses the programs, services and policies that he believes are needed to promote the idea of recovery for schizophrenia. And he says what more he would like to see done by the Schizophrenia Society of Canada, the mental healthcare professions and the criminal justice system to promote the very idea of recovery.
Katherine Flannery Dering talks about her life, career, and experience as elder sister of her brother, Paul, as he lived with schizophrenia. She explains her book 'Shot In The Head', http://www.shotintheheadbook.com/. She describes his false memories and how she came to recognize these. She highlights the challenges that false memories created for him in his interactions with his present and past realities and the challenges these created for the family as a whole. She explains how her book is her very own memoire, and how this and her family's memoires and memories may have helped them all in understanding his challenges caused by false memories. She says what more she would like to do to improve support for families with family members living with false memories. She describes caring for Paul at the end of his life and what she and the family learned from this experience. She shares her message for families and family caregivers caring for family members living with schizophrenia.
Dr. Penny MacCourt, pennymaccourt@shaw.ca, works with older adults and their families in community, long-term care and acute-care settings. She explains the Mental Health Commission of Canada and the Family Caregiver Advisory Committee, and how their purposes relate to adults living with schizophrenia and to their families and their service providers. She describes her consulting across Canada with adults living with mental health challenges, and with their families and service providers. She shares her impressions of their experiences. She identifies the most challenging of the challenges for adults living with serious mental health conditions, such as schizophrenia, and for their families and their service providers. She describes what she see as the most promising ways of overcoming these. She says what more she would like to see done to promote the most promising ways of coping with the challenges. She comments on the value of archiving Episodes of Schizophrenia Community Radio.
Anika Francis was first exposed to schizophrenia at the age of three when her mother, Sakeenah Francis, was diagnosed with it. Sakeenah lived in and out of mental hospitals. For the past fifteen years, she’s been recovering after hitting rock bottom and choosing to stay on her medicine for her sake and her family’s. They both discuss their careers and work. Anika talks about her book, “Love's All That Makes Sense”, http://bridgeross.com/francis.html. Sakeenah explains the speeches she makes for the National Alliance on Mental Illness, http://www.nami.org/. They describe their experiences with schizophrenia and discuss the 25 years of challenges they both experienced and the ways they overcame them. They talk about ways to increase help for children growing up with mothers with schizophrenia and for their mothers. They share their messages for children of parents with schizophrenia and for family caregivers for loved ones with schizophrenia and for mothers recovering from schizophrenia.
Dr. Michael Eleff, a senior psychiatrist in the Schizophrenia Treatment and Education Program of the Health Sciences Centre in Winnipeg, is an Associate Professor of Psychiatry at the University of Manitoba. He describes his career, his work with families and individuals recovering from schizophrenia and psychotic disorders, and how he emphasizes respect, caring, relationships and hope in promoting recovery. He identifies challenges to recovery, to mental healthcare services and to family caregivers that arise when access to treatment is delayed instead of early. He describes the ways in which early treatment helps overcome these challenges. He says what more he would like to do and see done to promote early treatment for schizophrenia and psychotic disorders. He says whether having more discussions like the present one in the Schizophrenia Community Radio archive would be helpful in promoting early treatment for schizophrenia and psychotic disorders or, if not helpful, why not.
Dr. Ella Amir, Executive Director of AMI-Québec since 1990, http://amiquebec.org/, leads one of Québec’s principal resources for families struggling to cope with mental illness, including schizophrenia. She explains her work with the Mental Health Commission of Canada as it relates to schizophrenia. She highlights the relevance to schizophrenia of the Commission’s publications “Taking the Caregiver Guidelines Off the Shelf: Mobilization Toolkit” and “National Guidelines for a Comprehensive Service System to Support Family Caregivers of Adults with Mental Health Problems and Illnesses”. She highlights challenges that can arise for family caregivers whose family members living with schizophrenia are receiving care from a psychiatry department in a hospital, in working with police services, and in taking care of themselves. She says what she thinks about Schizophrenia Community Radio offering family caregivers opportunities to describe their experiences with the Mobilization Toolkit.
Dr. Lori Triano-Antidormi, a Registered Psychologist in Ontario, Canada, drtriano@bellnet.ca, holds the PhD from York University. Dr. Chris Summerville is CEO of the Schizophrenia Society of Canada, www.schizophrenia.ca, and Executive Director of the Manitoba Schizophrenia Society. She talks about the killing of her son by a woman living with mental illness. He talks about the work of the Society as it relates to killings by individuals living with schizophrenia, and about the questions it receives relating to these killings. They discuss how criminal justice systems deal with individuals living with serious mental illnesses who have killed someone, and the care provided by healthcare systems care for these individuals. They examine the principle of “Not Criminally Responsible”. They talk about the changes they want or don’t want to see in criminal justice systems and healthcare systems. They say what more they would like to do and see done to bring the changes they want to see.
On August 18, 2015, the John Howard society of Ontario released the report “Unlocking Change: Decriminalizing Mental Health Issues in Ontario”. It indirectly raises the question of whether psychoses, which occur with schizophrenia, should be decriminalized. Dr. Chris Summerville is the CEO of the Schizophrenia Society of Canada, www.schizophrenia.ca. He explains its role as a national organization, how it handles discussions of psychoses, and its work with psychoses. He discusses the mental-health, societal and mental healthcare system challenges associated with psychoses that may lead to individuals’ involvement with the criminal justice system. He describes how and how well these challenges are handled by the criminal justice system. He discusses the case that can be made for decriminalizing psychoses, the changes essential for mental healthcare systems prior to any efforts to decriminalize psychoses, and what more should be done by the Schizophrenia Society of Canada.
Lisa Feldstein is the principal lawyer at Lisa Feldstein Law Office, http://familyhealthlaw.ca/. She practices family health law, which includes providing advice in reproductive law, mental health law, privacy, elder law and other health law matters. She talks about her career, experience with family caregiving, work in family health law, and one of her newspaper articles. She discusses challenges that family caregivers experience when they see warning signs that a family member may be starting with psychosis or psychotic episodes, when they try to get help, when the police are alerted, and when they try to communicate with healthcare via its privacy systems. She describes effective responses to the challenges. She says what more she would like to do and see done to help family caregivers caring for family members affected by psychoses and psychotic episodes, and to make privacy laws more supportive of family caregivers’ information needs. She shares her message for family caregivers.
Sharon Evans graduated as a psychiatric nurse in 1967 and in 2008 completed her Bachelor of Science in Psychiatric Nursing. Irene Friberg has a teaching degree. She and her husband have a daughter diagnosed mid-grade 12 with schizophrenia. Sharon and Irene talk about their experiences with family caregiving for family members living with schizophrenia and about their work with the British Columbia Schizophrenia Society Penticton Branch, http://ow.ly/HODMb. They discuss the challenges for family members living with schizophrenia and for their family caregivers. They explain how one-on-one support for family caregivers caring for family members living with schizophrenia helps them and their family members overcome the challenges. They say what they would like to do and see done to promote one-on-one support for family caregiving for schizophrenia, and share their messages for family caregivers who have just learned that one of their family members is living with schizophrenia.
Dr. Chris Summerville is the CEO of the Schizophrenia Society of Canada (SSC), www.schizophrenia.ca, and the Executive Director of the Manitoba Schizophrenia Society. Doug Race, a Board member of SSC, is acting as the Education committee Chair and is a member of the Advocacy committee. They talk about their lives, careers, and experience with schizophrenia. They describe their work with SSC. They highlight the most challenging of the challenges that schizophrenia creates for individuals who live with it, for their families and their family caregivers, and for healthcare and social services provided for individuals who live with schizophrenia. They explain the ways that a radio archive system will help meet the challenges they’ve identified. They discuss the ways in which SSC will fund and publicize its radio archive. They say what more they would like to do and see done, and by whom, to promote support for SSC’s radio archive.
Craig Lewis, www.betterdaysrecovery.com, is a Certified Peer Specialist living in Massachusetts. He has struggled immensely throughout his life. He has however successfully transformed it into a life of wellness. He talks about his life, challenges, and career as an author. He discusses his book ‘Better Days – A Mental Health Recovery Workbook’ and explains how it relates to the challenges he’s experienced. He describes what he thinks are the most challenging of the challenges to recovery, self-regard and making adjustments to lives affected by struggling to achieve mental health recovery. He talks about the most effective ways in which he sees these challenges being coped with. He says what more he would like to do and to see done by others to promote the vision of mental health recovery. He discusses the value he sees for the mental health community in archiving discussions such as the one in which he has just participated.
Chris MacLeod is a Partner in the law firm Cambridge LLP, www.cambridgellp.com. He also has Cystic Fibrosis and chairs the Canadian Cystic Fibrosis treatment Society. He talks about his life as a prominent lawyer living with cystic fibrosis and his work as the chair of the Society. He explains his success in advocating for recognition of the new cystic fibrosis medication, Kalydeca. He describes what he sees as most challenging of the challenges associated with access, disparity, and inequity as these relate to medications of demonstrable value in the treatment of cystic fibrosis. He highlights ways in which advocacy confronts the challenges he identifies. He says what more he would like to do through the Canadian Cystic Fibrosis treatment Society and to see done by others to strengthen advocacy for access to cystic fibrosis medications. He comments on the value to the cystic fibrosis community of archiving more discussions like the present one.
Mark Courtepatte is co-chair of the Hamilton and Area Parent and Caregiver FASD Support Group, http://hamiltonfasdsupport.ca/. Savanna Pietrantonio, an adult living with FASD, is a Life Strategy Coach helping people across the globe support FASD, http://ow.ly/Pi29S. They talk about their work and their experiences of FASD. They highlight the most challenging of the challenges they see created for children and adults living with FASD, and for parents and families. They explain the most important needs and services to help children and adults and their families and their family caregivers overcome the challenges they’ve identified. They say what more they would like to do to improve services for children and adults living with FASD. They say what they think of the idea of archiving discussions in which people describe their experiences of FASD.
Micheal Vonn, lawyer and Policy Director of the British Columbia Civil Liberties Association, https://bccla.org/, describes her work as it relates to HIV/AIDS. She says what privacy means, how privacy differs from confidentiality, why it’s important to distinguish between privacy and confidentiality, and what’s meant by personal health information and personal information as it relates to men, women and children living with HIV/AIDS. She identifies what she sees as the challenges to privacy created by record systems used by healthcare services, by social services, and by public health services in their work of advancing the health of the public. She explains what she sees as the key principles for protecting the human rights, for privacy laws and for public health services. She says what more she would like to do and see done, and by whom, to strengthen respect for the key principles. She comments on the value of archiving discussions for the HIV/AIDS community.
Tom Blackwell, tblackwell@nationalpost.com, Senior National Reporter at Canada's National Post newspaper. He explains why he became interested in healthcare errors and how he developed his work as a reporter investigating these. He highlights the types of healthcare errors and the circumstances in which they commonly occur. He identifies what his work suggests are the most challenging of the challenges involved in getting the facts about healthcare errors, overcoming the secrecy surrounding healthcare errors, and in providing information about healthcare errors to patients who’ve been the subject of healthcare errors and to patients generally. He explains what his work shows to be the most favored ways for overcoming the challenges. He says what more he intends for further reporting on advancements in keeping patients and the public generally informed about healthcare errors. He comments on the value of archives of patients’ experiences of healthcare errors.
Till Seuring, T.Seuring@uea.ac.uk, holds a Bachelor's degree from the University of Bamberg (Germany) in Economics and a Master's degree from the University of Göttingen (Germany) in International Economics. He describes his life, career, and experience with diabetes. He explains his PhD research and the importance of understanding the relation between Type 2 diabetes and its economic impact on people whom it affects. He identifies what he sees as the most challenging challenges created by the economic impact of Type 2 diabetes on individuals and their family caregivers and families. He explains how he wants his research to help meet the challenges. He says what more he would like to do and see done and by whom to advance understanding of part of healthcare and social services and society as a whole of the economic impact of Type 2 diabetes. He discusses the value to the diabetes communities involved in his research of archiving discussions with people affected by Type 2 diabetes.
Angela Geddes is the Assessment Coordinator at the FASD London Region Assessment Clinic, http://www.fasd-londonregion.com/. Darlene --. is an Early Childhood Educator and Homeschooling Mom of two who’s worked with children for the past 24 years in formal and home childcare settings. They talk about their lives, careers, experience with FASD children, work and responsibilities. They highlight the challenges that FASD creates for children, for their families and their family caregivers, and for the providers of social and healthcare services. They identify what they see as the most important needs and services for helping meet the challenges created for children living with FASD, for the families and family caregivers, and for providers of healthcare and social services. They say what more they would like to do and see done to improve services for FASD children, their families and their family caregivers.
Bill Brown, a registered pharmacist, holds the BSc in Pharmacy. His current focus is methadone maintenance treatment. He talks about his life and career as a pharmacist. He explains the types of pharmacies and the services these provide. He identifies the responsibilities of pharmacists working in the pharmacies. He highlights the most challenging of the challenges that patients, their families and family caregivers encounter in their dealings with pharmacists and pharmacies, including challenges to privacy of personal health information. He discusses the ways in which patients, their families and their family caregivers can get help with and overcome the challenges that they encounter in their dealings with pharmacists and pharmacies. He says what more he would like to do and see done to advance the ways in which patients, their families and their family caregivers get help with and overcome the challenges that they encounter in their dealings with pharmacists and pharmacies.
Michael Crystal, a criminal lawyer, is a partner at the law firm of Spiteri & Ursulak LLP, where he currently leads the class action group, http://crystalcyrlaw.com/lawyers/. He’s currently class counsel in five personal health information class actions. He explains breaches of personal health information and why these justify lawsuits. He highlights class-action lawsuits relating to patient privacy in which he is active. He describes ways in which patients can become involved in class action lawsuits relating to breaches of their privacy, and says what they need to consider. He discusses the potential implications for patients, for families and family caregivers, and for hospitals of the class-action lawsuits in which he is active and which relate to patient privacy. He says what more he would like to do and see done to advance understanding part of health care professions and patients and their families of the importance of privacy for patients and their families.
Micheal Vonn is a lawyer and the Policy Director of the British Columbia Civil Liberties Association, https://bccla.org/. She explains how civil liberties relate to ethical principles, governance, and harms in medical research. She references the UK’s Nuffield Council on Bioethics’ Report, bioethics@nuffieldbioethics.org, published February 2015, which recognizes how developments in data science and computing challenge conventional approaches to governance of data used in medical research. She discusses the challenges to civil liberties created for individuals who are the subject of medical research in Canada. She comments on the effectiveness of Canada’s efforts to respond to the challenges. She says what more she would like to do and see done to advance the civil liberties in Canada of individuals who are the subjects of medical research. She comments on the value of archiving the experience of Canadians regarding their civil liberties in medical research
Dr. Chris Summerville is the CEO of the Schizophrenia Society of Canada (SSC), www.schizophrenia.ca, and the Executive Director of the Manitoba Schizophrenia Society. Doug Race, a Board member of SSC, is acting as the Education committee Chair and is a member of the Advocacy committee. They talk about their lives, careers, and experience with schizophrenia. They describe their work with SSC. They highlight the most challenging of the challenges that schizophrenia creates for individuals who live with it, for their families and their family caregivers, and for healthcare and social services provided for individuals who live with schizophrenia. They explain the ways that a radio archive system will help meet the challenges they’ve identified. They discuss the ways in which SSC will fund and publicize its radio archive. They say what more they would like to do and see done, and by whom, to promote support for SSC’s radio archive.
Ernest Matton (Little Brown Bear), ernest@look.ca, is a Métis helper and guide who inspires living in today’s hectic world, and bridging culture and professional disciplines to assist people in finding help. Tom Regehr, self-employed since he was 14, is the founder of CAST Canada, http://www.cast-canada.ca/, which promotes better understanding of trauma and healing. They talk about their lives, careers and work. They explain what’s involved in the trauma they discuss. They highlight the most challenging of the challenges created for mature adults, youths and families by the trauma. They explain what the healing journey involves and the support that it requires. They say what more they would like to do and see done to promote support for mature adults, youths and their families living with the challenges they’ve discussed. They say whether having more discussions like present one in the archive would be helpful and, if so, how this would be helpful to the communities they work with.
Marni Soupcoff, a lawyer, is a newspaper columnist and Executive Director of the Canadian Constitution Foundation, and previously served the Institute for Justice. She describes her work and experience with family caregiving. She explains autonomy and highlights the challenges it creates for families and family caregivers caring for family members with mental illness or brain damage who may be unable to make decisions in their own best interests. She discusses the challenges created for privacy and social justice laws and for medical practice by autonomy when its lore is applied to individuals living with mental illness or brain damage. She says what more she would like to do and see done to advance understanding of autonomy’s implications for individuals, their families and family caregivers. She shares her message for family caregivers without substitute decision-maker who encounter difficulties getting their alerts listened to by psychiatrists and other healthcare professionals.
Franziska Buri, of Ontario, Canada, is a military spouse of a 22-year Canadian Armed Forces Veteran. He was deployed to Afghanistan in 2008 and was severely wounded as a result of an enemy attack. She talks about her life, career and experience with family caregiving. She explains her husband’s injuries that resulted from his military service in Afghanistan. She describes what she sees as the greatest challenges created for military personnel by serious injuries sustained during military service, and for their military spouses and their families. She highlights True Patriot Love Foundation's help in overcoming the challenges. She says what more she would like to see done to promote help in overcoming the challenges. She comments on the value of archives of experiences
Dr. Michael Hill, Professor for the Departments of Clinical Neurosciences, Community Health Sciences, Medicine and Radiology at the University of Calgary, is Director of the Stroke Unit for the Calgary Stroke Program. He highlights the research into acute ischemic stroke he and his research team are conducting, and what the “tiny tubes” are. He explains how the research is organized and conducted, how stroke patients are included, and how the research is described to them and their family caregivers. He explains why the key findings are so important in the emergency treatment of acute ischemic stroke, how the findings are being applied in the treatment, and the findings’ most important benefits to stroke patients. He says what more he would like to do and to see done and by whom to advance research into treatment of acute ischemic stroke. He shares his message for family caregivers who have recently been told that a loved one has just had an acute ischemic stroke.
Benjamin Ward serves as the CEO and as a Director of Canadian Cannabis Corporation. He talks about his life and career. He describes his work, and explains the Corporation’s mission, purposes and achievements. Nathan Neinhuis is one of the foremost global authorities on Cannabis cultivation for medical purposes. He explains what Cannabis is, its uses, and how it’s grown and processed for medical purposes. Mariana Bracic is a lawyer, serving as Chair of the Advisory Board to the Corporation. She talks about her life and career. She highlights the legal and social requirements governing the supply of Cannabis to the public in Canada, and the legal requirements governing the supply of Cannabis for medical purposes in Canada and the legal requirements governing the supply of Cannabis for medical purposes in Canada. They each share their message for family caregivers who are wondering whether their family members who live with troublesome medical conditions would benefit from Cannabis.
Carol Stanley was the family caregiver for the last five years of her father’s life. After a long and courageous battle with chronic obstructive pulmonary disease, congestive heart failure, dementia, and bladder cancer, at age 95, he decided for himself it was time to go. He stopped eating. He died peacefully on December 12, 2014. She highlights her own life and her father’s, and the effects on her of her family caregiving for him. She identifies the most challenging of the challenges she experienced as family caregiver for him, for family caregivers like her who are themselves seniors and are caring for elderly family members like her father, and for family caregivers in getting help from the healthcare system. She describes the most effective help for overcoming the most challenging of the challenges. She explains her father’s legacy and how it strengthened her. She shares her message for family caregivers who are seniors themselves and who are caring for an elderly parent.
Dr. Stephen Hoag’s career includes teaching, researching, writing, administering and creating programs for students in Pennsylvania and Connecticut. His book, “A Son’s Handbook, Bringing up Mother with Alzheimer’s/Dementia”, was published in 2013. He highlights his life, career and work, talks about his book, and says why he wrote it and who he wrote it for. He identifies the most challenging of the challenges for individuals living with Alzheimer’s disease, for their family caregivers, and for healthcare and social systems. He discusses help for overcoming the challenges. He says what more he would like to do and see done to strengthen help for overcoming the most challenging of the challenges for individuals living with Alzheimer’s disease and for their family caregivers. He shares his message for family caregivers who have recently learned that a loved one has been diagnosed with Alzheimer’s disease.
Dr. J R Harding, www.jrharding.com, a recognized disability leader with personal and professional experience, is a quadriplegic, author of, ‘Now What?’, accessibility expert, and international speaker who’s contributed to national, state, and community policy. Dr. Eileen Wolkstein holds the PhD in Rehabilitation Counseling from New York University. For thirty years she was a research scientist and adjunct professor in the Rehabilitation Counseling Department. They highlight their personal experiences and work. They discuss the challenges created by serious and persistent disabilities in which the co-existing disabilities are addictions at the stage of serious disabilities, and describe help for individuals living with the challenges. They say what more they would like to do and see done to promote help for individuals with the challenges created by serious and persistent disabilities in which the co-existing disabilities are addictions, and share their messages for family caregivers.
Jeff Noble is the Founder and CEO of Noble Initiatives 2014, http://fasdforever.com/, which provides hope and education to people caring for someone living with Fetal Alcohol Spectrum Disorder (FASD). He talks about his own experience of family caregiving for FASD, his on-line applications, and his work with his partner, Tara Soucie, providing training in the fundamentals of FASD. He identifies what he sees as the most challenging of the challenges to fairness that arise in the general community and in schools, and when individuals are not well enough to make decisions for themselves. He discusses help for overcoming the most challenging of the challenges to fairness for family caregivers and for their family members. He says what more he would like to do and see done to strengthen fairness for family caregivers and their family members. He says what role he sees for human rights commissions in strengthening fairness for family caregivers and their family members.
Jessica Hutton Rantala talks about her own experience of family caregiving for FASD, her research in which she studied the impact of FASD on the criminal justice system of Canada, and the her work with her firm Jessica Hutton Rantala Consulting, http://ow.ly/JP840. She explains what she sees as the most challenging of the challenges to hope for family caregivers caring for family members living with FASD and for the family members themselves, and that she encounters in her work with her firm. She discusses help for overcoming the most challenging of the challenges to hope she identifies. She says what more she would like to do and see done and by whom to strengthen help for family caregivers caring for family members living with FASD and for the family members themselves. She shares her message for family caregivers who have recently learned that a young family member has been diagnosed with FASD.
Dr. Tejal Gandhi is President of the National Patient Safety Foundation, www.npsf.org, and the Lucian Leape Institute. She holds the MD from Harvard Medical School and the MPH from the Harvard School of Public Health. She’s a board certified internist and Associate Professor of Medicine at Harvard Medical School. She explains transparency for patient safety. She highlights the work of the Foundation and the Institute. She identifies the most challenging of the challenges to transparency among clinicians and patients, among clinicians themselves, among healthcare organizations, and among clinicians and healthcare organizations and the public. She discusses ways for overcoming the most challenging of the challenges she identifies for these stakeholders. She says what more she would like to see done through the Foundation, the Institute, and others to improve patient safety. She shares her message for family caregivers concerned about the safety of a loved one in the care of a hospital.
Brian Beamish, Acting Information and Privacy Commissioner of Ontario, www.ipc.on.ca, (IPC) talks about his life, career and experience of family caregiving. He explains the work of IPC and his role as Acting Commissioner. He explains privacy breaches that Rouge Valley Health System hospital reported to IPC, why these are matters for concern. He describes the effects on the mothers and their new-borns of the breaches while they were in the care of the Rouge Valley Health System. He describes how IPC responded with an official Order, and its findings. He explains the changes IPC ordered for the hospital’s electronic information system, the hospital’s administrators, and for the hospital’s healthcare professionals and other staff. He says what more he would like to do and see done to improve protection of privacy of patients, mothers, new-borns and family caregivers in the care of hospitals. He shares his message for women who soon will be mothers of new-borns in the care of hospitals.
Emily Nicholas has helped Patients Canada, http://www.patientscanada.ca/, bring the patient voice to all levels of health care for over five years, drawing on her own experience as a patient as well as a lifelong interest in medicine and public health. She talks about her life, career, and experience with family caregiving. She explains the work of Patients Canada and her work with it. She discusses the most challenging of the challenges that patients’ privacy creates for hospitals, legislators and for patients themselves. She discusses ways for overcoming the most challenging challenges she identifies. She says what more she would like to see done to improve protection of privacy of patients by Patients Canada and by others. She shares her message for patients who are concerned about the privacy of their own personal health information.
Bill Brown’s current focus is methadone maintenance treatment. A registered pharmacist, he holds the BSc in Pharmacy. He talks about his life and career. He explains what methadone is, how it’s used to help individuals with addictions, and his work with methadone clinics. He says which of many challenges that addictions create are most challenging for individuals, healthcare services, and methadone clinics. He explains how methadone clinics address the most challenging of the challenges for individuals, healthcare services and methadone clinics. He says what more he would like to do through his work with methadone clinics and to see done by others to promote more and better support for individuals with addictions. He shares his message for family caregivers who have just recognized that their loved ones are likely living with serious addictions.
Dr. Gordon Atherley holds the British equivalents of the N American PhD and MD degrees, and the LLD, Honoris Causa, from Canada’s Simon Fraser University. He founded Family Caregivers Unite to empower family caregivers by amplifying their voice, spreading their vision, publicizing their value, and providing them with information that’s trustworthy, understandable and useful. In 2015, he says, it’s very important for the voices of family caregivers to be listened to, heard and understood because governments want to do more for families. But the things governments want to do for families give too little attention to family caregivers. To get the attention they so rightly deserve, he says, family caregivers should get their voices broadcast. Using Alzheimer’s disease, fetal alcohol spectrum disorder, and schizophrenia for his focus he explains how family caregivers can organize themselves, develop the messages they want to get received, and make the best use of Family Caregivers Unite.
Sharon Evans graduated as a psychiatric nurse in 1967 and in 2008 completed her Bachelor of Science in Psychiatric Nursing. Irene Friberg has a teaching degree. She and her husband have a daughter diagnosed mid-grade 12 with schizophrenia. Sharon and Irene talk about their experiences with family caregiving for family members living with schizophrenia and about their work with the British Columbia Schizophrenia Society Penticton Branch, http://ow.ly/HODMb. They discuss the challenges for family members living with schizophrenia and for their family caregivers. They explain how one-on-one support for family caregivers caring for family members living with schizophrenia helps them and their family members overcome the challenges. They say what they would like to do and see done to promote one-on-one support for family caregiving for schizophrenia, and share their messages for family caregivers who have just learned that one of their family members is living with schizophrenia.
Dr Ethelle Lord is the Founding President of the International Caregivers Association, www.icareassoc.com. She holds a Master’s of Education in Counseling and a Doctorate of Management in Organizational Leadership. She talks about her life, career, and her experience of family caregiving for her husband. She explains the work of the Association. She discusses the challenges to family caregivers and their family members living with brain dysfunctions due to dementia, and says which of these are least well understood by health care professionals and systems. She explains how the Association is addressing the challenges. She says what more she would like to do through the Association and see done by others to promote more and better support for family caregivers and their family members living with brain dysfunctions due to dementia. She shares her message for family caregivers who have just recognized that their loved one is likely living with brain dysfunctions due to dementia
Tim Windle is the biological father of 2 daughters. The youngest, 28, is affected by FASD. He and his wife of 20 years, Barb, have experienced the many challenges in raising an FASD-affected daughter. David Gerry, BSc Biology and Psychology, http://LivingWithFASD.com, began his intensive “home-study” applied learning in FASD on becoming a foster parent to two children with FASD. They share experiences of family caregiving for FASD. They highlight the most challenging challenges for family members living with FASD and for their family caregivers. They discuss treatment programs needed to help overcome these challenges, and the methods they recommend to family caregivers for achieving success in advocating for these. They say what more they would like to do and see done to promote advocacy by family caregivers caring for family members living with FASD. They share their messages for family caregivers who have just learned that a family member is living with FASD.
Mark Telego’s experience of family caregiving for his mother began after his father died. She’d lived with insulin dependent diabetes for 45 years, and with what for 9 years seemed to be Alzheimer's disease. He published his website, http://www.eyes-n-ears.net, in Dec 2013, 14 months after her death. He talks about his life, career, and family caregiving. He explains his work on documentary and video films and his website. He explains Quality of Life and the challenges to Quality of Life experienced by family caregivers and their family members living with Alzheimer’s disease. He discusses ways for family caregivers to overcome these challenges for themselves and their family members. He says what more he would like to do and see done, and by whom, to promote Quality of Life for family caregivers and their family members living with Alzheimer’s disease. He shares his message for family caregivers who have just recognized that their loved one is likely living with Alzheimer’s disease.
Michael Ellenbogen was diagnosed with younger-onset Alzheimer’s disease in 2008 at the age of 49. Prior to his diagnosis, he was a network operations manager for a fortune 500 financial institution. He talks about his life and career up to the point of the diagnosis, his book, From the Corner Office to Alzheimer's, published in 2013, and the Michael Ellenbogen Movement, http://www.michaelellenbogenmovement.com/, which he founded. From his past experience, he describes the first worrying things he noticed and his response to these, his decision to get medical help, and the progress of the disease from the time the diagnosis was made. He explains the greatest challenges he experiences now, the help and medical help he’s receiving, and how helpful the help is. He explains the ways he foresees his future with younger-onset Alzheimer’s disease, and shares his message for people who, like him, are living with younger-onset Alzheimer’s disease.
Dr. Helen Wallace is Director of GeneWatch UK, www.genewatch.org, a not-for-profit organization which aims to ensure that genetic technologies are used in the public interest. She talks about her life, career, and experience of family caregiving. She explains GeneWatch’s work and its value for families and family caregivers. She highlights the potential for misuse or abuse of genetic information collected by hospitals, commercial organizations and for or by police and criminal justice systems. She discusses protections needed to safeguard people, their genetic relatives and their descendants against the risks of misuse or abuse of genetic information. She says what more she would like to do and see done to improve safeguards for people against the risks of misuse or abuse of genetic information. She shares her message for individuals and family caregivers who are wondering whether their genetic information is being collected by the hospital, clinic or doctor who’s treating them.
Dr. Cynthia Jacobs holds a master's degree in Community Social Psychology and a doctorate in Education. She’s Regional Manager, Americas, Training & Research Consultancy with QSR International http://www.qsrinternational.com. She describes its work and her work with it. She talks about her about her life, her career, and her experience of family caregiving. She compares qualitative with quantitative research and how computer methods strengthen research. She describes how interviews are recorded, processed and analyzed by the computer, and explains how researchers work with the computer. She says what more she would like to do and see done to promote computer-assisted qualitative research in healthcare to improve our understanding of the experiences of family caregivers, families, and individuals living with serious illnesses, such as schizophrenia. She shares her message for family caregivers who are wondering whether to participate in computer-assisted qualitative research.
Dr. Dorothy Badry, PhD, RSW, is an associate professor in the Faculty of Social Work, University of Calgary, www.fsw.ucalgary.ca. Her doctoral dissertation, ‘Becoming a Birth Mother of a Child with Fetal Alcohol Syndrome’, reviewed the lives of 8 women aged 25 to 60 who’d borne children diagnosed with the Syndrome. She talks about her life, career, and her experience of family caregiving for close family members with serious health conditions. She explains the types of services provided for fetal alcohol spectrum disorders and where the responsibilities lie for providing these. She discusses consistency in delivery of the types of services provided across Canada. She says what more she would like to do and see done to improve support for family caregivers, families and their family members living with fetal alcohol spectrum disorders. She shares her message for family caregivers who have recently learned that a family member will have to live with a fetal alcohol spectrum disorder.
Paula Spencer Scott is the author of ‘Surviving Alzheimer's: Practical tips and soul-saving wisdom for caregivers’ (2014). brbr http://www.survivingalzheimersbook.com/ brbr She talks about her life, career, and experience of family caregiving for close family members living with Alzheimer's disease. She describes her book and says who she wrote it for and why she wrote it. She discusses the challenges of Alzheimer’s disease for those who live with it, their family caregivers, and the quality of life of families as a whole. She highlights common-sense and supportive advice for family caregivers in responding to the challenges for their family members, for family caregivers themselves, and for their families. She says what more she would like to do and see done to improve support for family caregivers with family members living with Alzheimer’s disease, and shares her message for family caregivers who have recently learned that a family member will have to live with Alzheimer’s disease.
Sarah Gorham and Stone Morris, www.grinddining.com, talk about their lives, careers and experience of family caregiving. They explain Grind Dining and the mission they’ve set for it. They describe the challenges associated with food, such as chewing, using utensils, self-feeding and to social inclusion in communal meals, which arise for individuals living with Alzhheimer’s disease. They discuss the ways in which Grind Dining helps in overcoming the challenges in chewing, using utensils, self-feeding, and to social inclusion during communal meals. They say what more they would like to do and see done to promote Grind Dining for individuals and their family caregivers. They share their messages for family caregivers who are wondering if their family members living with Alzhheimer’s disease can be helped with their eating, and for residential care facilities caring for individuals living with Alzhheimer’s disease about helping them with their eating.
Dr. Mary Archer, Breath of Life Arts, lives her life in show business, breathoflifearts@gmail.com. She talks about her life, career, and experience with family caregiving. She explains dance as an art form and her work for Alzheimer’s disease. She describes how her students aged 7- 95, some reliant on wheelchairs or walkers, connect through singing and dancing, and explains how she includes dance in classes for people 55 plus. She explains the Heart’s Code’s importance in thinking about the mind, and how it links to dance as an art form. She highlights how the Center on Aging Health & Humanities at George Washington University rates dance as an activity that promotes physical and mental health. She says what more she would like to do and see done to advocate for dance as a valuable activity that promotes physical and mental health. She shares her message for family caregivers caring for elderly relatives about dance as a valuable activity that promotes physical and mental health.
Mara Botonis’s work, http://www.whencaringtakescourage.com/, involves her at the national level and alongside families coping with the impact of Alzheimer's disease. She talks about her life, career, and experience as family caregiver for a close family member stricken by the disease. She discusses her book ‘When Caring Takes Courage: A Guide for Alzheimer's Caregivers’. She explains the challenges that Alzheimer’s disease creates for individuals who live with it, their families, and for their family caregivers. She discusses the role of courage for family caregivers in responding to the challenges. She explains why courage supports hope and joy for families and family caregivers. She says what more she would like to do and see done to improve support for family caregivers with family members living with Alzheimer’s disease and shares her message for family caregivers who have recently learned that a family member will have to live with Alzheimer’s disease.
Aida Fernandes is the Chief Science & Education Officer at the Crohn’s and Colitis Canada, http://ow.ly/DKLCBv. She leads its research, patient services and advocacy programs. She talks about her life, career, and experience with family caregiving. She highlights her work with Crohn’s and Colitis Canada. She discusses the themes of the November, 2014 Conference ‘Meeting of the Minds: Mentoring in IBD and Canada Future Directions’. She describes the most challenging of the challenges to health associated with the digestive and immune systems when these are affected by Crohn’s disease and colitis, and the complications that occur along with Crohn’s disease and colitis. She explains the treatment for these challenges. She describes the highest priority work of Crohn’s and Colitis Canada to advance understanding of cause, care, and cure of Crohn’s disease and colitis.
Katherine Flannery Dering, author of ‘Shot in the Head: A Sister’s Memoir, A Brother’s Struggle’ is the second of ten children. Her younger brother, Paul, was diagnosed with schizophrenia at the age of 16. She talks about her life, career, and experience as Paul’s elder sister as he lived with schizophrenia. She highlights her book, and says why she wrote it and who should read it. She discusses the problems that schizophrenia created for Paul in his interactions with reality and with his memories of past realities of his life. She explains her own and her family’s memoirs, and says how these influence the ways in which she would like to improve support for family caregivers with family members living with schizophrenia. She says what more she would like to see done to improve support for families with family members living with schizophrenia. She shares her message for family caregivers who have recently learned that an adolescent family member will have to live with schizophrenia.
Dr. Rami Rudnick is a certified psychiatrist and a PhD-trained philosopher, harudnick@hotmail.com. He talks about his life, career and experience with family caregiving. He explains recovery and psychiatric rehabilitation for schizophrenia and other severe mental illnesses. He identifies challenges to recovery experienced by individuals including those who are receiving mental health services, and their families. He explains ways in which psychiatric rehabilitation helps individuals and their families overcome challenges. He discusses help that individuals and families may get from human rights legislation aimed at preventing discrimination based on mental health disabilities and addictions. He says what more he would like to do to promote psychiatric rehabilitation for schizophrenia and other severe mental illnesses, and he shares his message for family caregivers who have recently learned that a young adult family member has been diagnosed with schizophrenia.
Dr. Gordon Atherley founded Family Caregivers Unite on VoiceAmerica to empower family caregivers by amplifying their voice, spreading their vision, and publicizing their value. He founded EQualitative Research based on his experience of hearing family caregivers’ stories on Family Caregivers Unite. He explains advocacy and how it differs from activism. He talks about advocacy for meeting family caregivers’ needs for information and support, and their family members’ needs for protection and care. He explains qualitative research, how it compiles stories of first-hand experiences of family caregivers and family members, and what makes the stories so helpful for advocacy. He describes getting started and what more needs doing and by whom to bring qualitative research to advocacy for family caregivers. He shares his message for family caregivers whose lives are crowded with family caregiving responsibilities or who are taking a well-earned rest from family caregiving.
Dr. Jeannette Raymond, author of “Now You Want Me, Now You Don’t!”, Nowyouwantmenowyoudont.com, is a psychologist and psychotherapist with a private practice in Los Angeles, California. She talks about her life, career and experience with family caregiving. She discusses her book. She explains fear of intimacy and emotional closeness. She highlights the causes of the top intimacy problems she’s identified in her work: denials and avoidances, inequalities and fears, and barriers in speaking and talking. She explains the methods she advocates for overcoming intimacy problems. She says what more would she would like to do and see done to help people in relationships overcome the fear of intimacy and emotional closeness. She shares her message for people in relationships who are starting ask themselves if they experiencing the fear of intimacy and emotional closeness.
Dr. Christopher Labos trained at McGill University, Canada, holds specialist certification in Internal Medicine and Cardiology, and a Master’s degree in Epidemiology, Biostatistics, and Occupational Health. He talks about his life, career in research, and experience with family caregiving. He says why in September 2014 he published the article, “It Ain't Necessarily So: Why Much of the Medical Literature Is Wrong”. He explains correlations and how these complicate medical research for causes and cures of illnesses. He discusses the timing of findings in medical research, false positive research findings in medical research, and the tradition of verification of research findings in medical research. He says what more he would like to do and see done to improve the quality of medical research. He shares his message for family caregivers who read about a breakthrough in medical research for a serious illness that affects a family member.
Yo Mustafa is an actor, a director and a teacher of theatre. He’s been in a same-sex marriage for 25 years. He talks about his life and career. He describes his partner’s life, career and the serious illness he developed. He explains the challenges that have arisen for his partner, his family caregiving, and his all-male family as a whole. He describes the supports they variously needed and still need. He says what more he would like to do to improve support for self-employed professionals like him and his partner when one of them develops a serious illness that prevents the one from working. He says what more he would you like to see done, and by whom, to improve support for families in which both partners are self-employed and one of them develops a serious illness which prevents the one from working. He shares his message for family caregivers in all-male families who have recently learned that one of them is no longer able to work because of a serious illness.
Linda Rosenbaum’s new book, ‘Not Exactly as Planned’, is a memoir about her family and the unexpected challenges of raising their son Michael, adopted at birth, diagnosed with fetal alcohol syndrome at age six. She blogs at linda-rosenbaum.blogspot.com. She talks about her experience with family caregiving and her book. From her experience she identifies the most challenging of the challenges created for children, young people and family caregivers, and describes the happiness that is possible for them. She describes the support she advocates for children, young people and family caregivers confronting the challenges she highlights. She explains the role she sees for spirituality. She says what more she would like to do to and see done to improve support for children, young people and family caregivers confronting the challenges. She shares her message for family caregivers who have recently learned that a child they are caring for may have to live with fetal alcohol syndrome.
David Gerry began learning about Fetal Alcohol Spectrum Disorder (FASD) on becoming a foster parent to two children with FASD. He’s co-founder of ‘Living with FASD Summit’, http://LivingWithFASD.com. He talks about his experience with family caregiving for the children. He discusses the roles of adoptive parents and birth mothers as family caregivers for children living with FASD. He describes the challenges that FASD creates for children and young people including those involved in the justice system, and their family caregivers. He explains what he sees as the most effective types of support for children, young people, and family caregivers. He says what more he would like to do to and see done to improve support for children, young people and family caregivers confronting FASD-related challenges. He shares his message for family caregivers who have recently learned that a child they are caring for may have to live with FASD.
Dr. Ben Bell is a specialist in general internal medicine and an executive member of Thrombosis Canada, http://thrombosiscanada.ca/. He talks about his career, experience with family caregiving, and his work as a specialist and with Thrombosis Canada. He explains how blood clots cause strokes, heart attacks, and venous thromboembolism, and the importance of these conditions. He discusses developing online knowledge translation tools for healthcare providers and for family caregivers. He highlights the key things that family caregivers should know when they are caring at home for a family member with a serious condition caused by a blood clot. He says what more he would like to do and see done, and by whom, to enhance care by healthcare providers and family caregivers for conditions caused by blood clots. He shares his message for family caregivers who have just learned that a loved one is to be discharged from hospital following treatment for a stroke caused by a blood clot.
CC Duncan and Raymond Lavoie founded The Powell River Mobility Opportunities Society, http://www.prmos.org, in 2010. They were inspired by beautiful landscapes and opportunities for outdoor activities in British Columbia, Canada. They talk about their lives, careers and experiences with family caregiving. They explain why they created the Society, and describe its work. They describe TrailRiders, the ways these are used, the types of trails these are used for, and the people who provide their human power. They discuss the types of mobility challenges TrailRiders serve and accommodate. They give examples of benefits that TrailRiders bring to people with physical and mental ability challenges. They say what more they would like to do and see done to promote Powell River Mobility Opportunities Society and the use of TrailRiders. They share their message for family caregivers who are wondering if one of their family members with a mobility challenge would benefit from TrailRiders.
Barbara Hall is Chief Commissioner of the Ontario Human Rights Commission, http://www.ohrc.on.ca/en. She explains why the Commission created its ‘Policy on preventing discrimination based on mental health disabilities and addictions’. She gives examples of human rights issues that could arise for young people living with addictions, adults and seniors living with mental illnesses, and their families and family caregivers. She explains the Commission’s support for individuals who are living with mental health disabilities or addictions and who become involved in privacy concerns, the criminal justice system, and detention centres. She explains the Commission’s help for organizations and people in general to understand their responsibilities to respect the human rights of persons living with mental health disabilities and addictions. She shares her message to family caregivers about the human rights of their family members who are living with mental health disabilities and addictions.
Ron Goldstein holds the BSc and DDS degrees. In dental practice, www.drronaldgoldsteinandassociates.com, he became interested in and took training in sleep apnea. He describes his life, career and experience with family caregiving, and says why he included treatment for it in his dental practice. He explains sleep apnea and describes its effects. He explains who can be affected by it, and the ways families and family caregivers become aware that a family member may be affected by it. He stresses the importance of recognizing and treating it. He discusses whether it is well enough understood in society generally. He explains how it is investigated and treated, and highlights the role of family caregivers in caring for family members living with it. He says what more he would like to do and see done to improve understanding of the importance of recognizing and treating it. He shares his message for family caregivers who are concerned that a family member may be developing it.
Dr. Michael Gordon, http://www.drmichaelgordon.com/, is a medical professor, ethicist and one of Canada’s best-known geriatricians. Susan Eng is Vice President for Advocacy at CARP, the national, non-partisan, non-profit organization, http://www.carp.ca/, committed to advocating for social change that will bring equitable access to health care and freedom from discrimination for aging Canadians. They talk about their work, and how it relates to dementia. They discuss the roles and responsibilities of specialist physicians, the mental healthcare and criminal justice systems, families and family caregivers as decision-makers involved with dementia, and the challenges that confront these decision-makers in fulfilling their roles and responsibilities. They say what more they would like to see done to promote fair and reasonable decision-making relating to dementia, and share their messages for family caregivers concerned about their family members who may be starting with dementia.
Mary Pat Armstrong is Founder and Chair of LIGHTS, http://www.lights.to/, which provides an option to explore for family caregivers who are interested in helping their family members with intellectual disabilities start a life outside the family home. She talks about her life, career and experience with family caregiving. She explains why LIGHTS was created. She identifies the challenges that intellectual disabilities create for young children, adolescents and young adults, and for families and family caregivers. She explains the ways in which establishing homes helps young people, their families and their family caregivers meet the challenges created by intellectual disabilities. She explains the challenges of establishing a home. She says what more she would like to do to and see done to overcome the challenges in establishing homes for young people living with intellectual disabilities. She shares her message for family caregivers.
Penney Cowan is the Founder and Chief Executive Officer of the American Chronic Pain Association, www.theacpa.org. Dr. Donna Kalauokalani currently practices Pain Management in Folsom, California and serves as President of the Board of the Association. They explain the Association’s mission and services. They identify the common causes of chronic pain and the challenges it creates for individuals living with it, for physicians treating it with medications, and for the Association itself in raising awareness among the health care community, policy makers, and the public of concerns about treatments for chronic pain. They discuss the Association’s position on the challenges associated with painkiller medications in the care of chronic pain. They say what more they would like to see done, and by whom, to promote safer and better care for individuals living with chronic pain, and share their messages for family caregivers.
Lianne Picot is a Story Coach & Consultant. She owns Very Good Stories, www.verygoodstories.com, her business helping organizations and individuals to develop their skills in storytelling. She talks about her life, career and experience with family caregiving. She explains the business and says why she created it. With a story she’s selected as an example, she explains what a story actually is, what types of content constitute a story, what a scenario is, and how family caregivers should prepare their stories when their time to tell them is short. With another story she describes the scenario she sees in the story and explains how a family caregiver could use it to create a story to compellingly garner support for a cause related to family caregiving. She says what more she would like to do to promote the art of story-telling for family caregivers. She shares her message for family caregivers with experiences they want to share for the benefit of other family caregivers.
Kellie Hill is a Nutritional Therapy Practitioner and owner of The Right Plan, http://therightnutritionplan.com/, in Medford, Oregon. She talks about her life, career, and experience with family caregiving. She describes her business and says why she created it. She explains nutritional therapy and how nutritional therapists provide their services and how they devise diets to reduce risks of complications in conditions such as diabetes and high cholesterol. She explains ways in which nutritional therapists can devise healthy eating for family caregivers to help them combat physical exhaustion and burnout, and to help them with the quality of their lives. She says what she would like to do and to see done, and by whom, to promote nutritional therapy for family caregivers. She shares her message for family caregivers experiencing challenges to the quality of their lives.
Krista MacKinnon, a mental health specialist, developed and runs an online support and education community called FamiliesHealingTogether.Com. She describes her life and career, her community ‘Families Healing Together, and the online services she provides. She explains challenges that mental health issues create for individuals and their family caregivers. She explains what recovery means for individuals who experience the mental health issues, and what recovery implies for their family caregivers. She highlights the types of face-to-face and on-line supports she provides for recovery from mental health issues experienced by individuals and by their family caregivers. She says what more she would like to do and see done, and by whom, to enhance support for family caregivers to help them with their family member’s recoveries from their mental health issues. She shares her message for family caregivers and families experiencing mental health challenges.
Scott and Julia Duncan founded ‘Sharing The Burden’, http://www.sharingtheburdenradio.org/, which operates a 12-step program for all members of troubled families. Their own experience taught them that, even when only one family member exhibits symptoms, everyone is affected and needs support. Scott tells his own story of spirituality and addictions, and describes his work with and vision for SharingTheBurden. He explains the help that spirituality provides for mental illnesses, addictions, and the high-risk behaviors that get people into detention centres. He describes the ways SharingTheBurden organizes and provides spiritual help for individuals and their family caregivers. He highlights what lies what lies ahead in bringing his vision to achievement through working with other organizations that also see the value of spirituality. He explains how funds will be raised and their uses. He shares his message for listeners who want to help with funding or join with him in any other way.
Krista James is National Director of the Canadian Centre for Elder Law, http://www.bcli.org/ccel, and staff lawyer with the British Columbia Law Institute. She describes the Centre’s work. She explains the benefits and risks of autonomy for the elderly. She discusses uniform standards for fire protection of the elderly living in retirement homes and long-term care facilities. She describes guidance she would like to see widely adopted for protecting seniors against elder abuse while respecting their autonomy; for personal service workers and professional staff when an elderly person insists on making a decision which could be risky; and for assessing the decision-making capacity of elderly people. She says what she would like to do and see done to enhance respect for the autonomy of elderly people while ensuring protection for them and others who may be put at risk by their decisions. She shares her message for family caregivers concerned about elderly family members’ decision-making.
Jeremy Gruber, JD, is President and Executive Director of the Council for Responsible Genetics, http://www.councilforresponsiblegenetics.org/. He explains the Council’s work, genetic information, and why it warrants special protection. He highlights the greatest risks when protection is insufficient of genetic information linked to identifiable individuals and their genetic relatives and descendants. He says how genetic information in big databases could be linked to identifiable individuals even when their names are excluded from the databases. He explains de-identification of records kept in big databases and summarizes the Council’s position on de-identification now and in the future. He describes the Council’s work informing the public about protection of genetic information. He suggests two key questions that individuals should ask if a hospital requests their consent for disclosure of their genetic information, and what they should assume if a hospital makes no such request.
John Louie is Men’s support counselor at the Tla’amin community health center, http://www.tlaaminhealth.com/. He counsels aboriginal men on drug addictions, domestic abuse, alcoholism, and depression. Michelle LaBoucane, a Métis woman of French and Cree ancestry, works passionately to inspire aboriginal people to live lives of significance and of optimum health and wellness. They talk about their work and the role of First Nations spirituality in their work. They explain the most challenging of the challenges faced by the people and families they work with. They explain the approach to counselling and the links with First Nations spirituality, the Aboriginal Suicide Critical Incident response team and the Medicine Wheel for individuals experiencing serious challenges. They say what more would they would like to see done and by whom to promote understanding of First Nations spirituality. They share their messages to individuals and families who are seeking healing and health.
Dr. Chris Summerville is CEO of the Schizophrenia Society of Canada, www.schizophrenia.ca, and Executive Director of the Manitoba Schizophrenia Society. As an advocate, he serves on numerous boards and committees. Dr. Gordon Atherley is host of Family Caregivers Unite!, http://ow.ly/r84EZ. He holds a doctorate in biostatistics and a medical degree. Chris explains the challenges schizophrenia creates for public understanding and awareness; for individuals and families with family members caught up in the criminal justice systems; for mental healthcare professionals in making diagnoses and prescribing treatments; for family caregivers seeing early warning signs that their family members are getting involved in risky behaviors or are in the early stages of psychotic episodes. Gordon explains how qualitative research can help with the challenges. They discuss bringing qualitative research to the Society’s work and share their messages for family members and their family caregivers.
Sara Shearkhani was a graduate student in economics but had to take a break after her husband was diagnosed with a brain tumor. Since then she has been a family caregiver. She describes her life and career, and her experience as family caregiver. She highlights her efforts to support family caregivers. She identifies the challenges she experiences as family caregiver for her husband and in dealing with the healthcare and social systems. She describes the challenges experienced by family caregivers in immigrant communities. She explains the responses she would like to see to the challenges she experiences as family caregiver for her husband and in dealing with the healthcare and social systems, and experienced by family caregivers in the immigrant communities. She says what more she would like to do and see done to help improve the lives of family caregivers. She shares her message for family caregivers caring for family members living at home with serious illnesses.
Sue Kelly, RN, PHN, is Founder and President, of ‘Still Sexy at 60+’, www.stillsexyat60.ca, a Canadian Company dedicated to enhancing lives of the 60-years plus. She talks about her life, professional career, and experience with family caregiving. She explains why she created ‘Still Sexy at 60+’. She describes the services she provides with Personal Wellness Coaching Consultations. She explains how the questions she receives point to needs for services that address weariness and fatigue, problems with family caregiving, and worries about intimacy. She discusses ways in which help should be increased for seniors who are weary and fatigued, experiencing problems with their family caregiving, and worried about intimacy. She says what more she would like to do and the collaboration she’d welcome to grow the services she provides through ‘Still Sexy at 60+’. She shares her message for family caregivers who want to remain sexy at 60 plus.
Dr Carl O. Helvie, www.BeatLungCancer.net, a registered nurse with two master’s degrees and a doctorate in public health and wellness, is author of ‘You Can Beat Lung Cancer Using Alternative Integrative Interventions”. Dr. Christian Joubert, a former professor of public law, focuses on holistic oncology, http://holisticoncologymovie.com. Carl describes his personal experience with lung cancer and his book. Christian explains his interest in holistic approaches to cancer, and the movie he’s working on. They discuss holistic interventions for lung cancer and holistic cancer treatment. They examine the medical profession’s opinions on holistic approaches and holistic oncology as alternatives to medical treatment of cancer. They say what more they would like to do to promote discussion about holistic approaches and holistic oncology as alternatives to the medical treatment of cancer, and suggest questions that cancer patients should ask the medical doctors who diagnose their cancers.
David Boulding, www.davidboulding.com, is a 62 year old criminal /family lawyer from Vancouver, Canada. In 2000 he wrote a paper, `Mistakes I Made with FAS Clients’, an introduction to fetal alcohol spectrum disorders (FASD). He describes his work as a lawyer and his experience with family caregiving. He explains what he learned from his mistakes about FASD, his clients living with FASD, the ways in which the criminal justice system dealt with them, and what he learned about their families and their family caregivers. He highlights improvement he’s seen since 2000 in the understanding of FASD and the support it receives in the social and healthcare systems, the police, and in the criminal justice system. He explains the further improvements he thinks are necessary, and what more he would like to do to and see done to help improve the lives of individuals and families living with FASD who become involved with the criminal justice system, and shares his message for family caregivers.
Dan Thompson’s life altered in 1980 following a car accident which left him with quadriplegia. Now he has his own company, DeeGee Rehabilitation Technologies Ltd, www.deegeerehab.com, which operates across North America. He talks about his experience of family caregiving, his training, qualifications and work experience, and his company. He explains its services and the types of injuries and health conditions served. He describes his journey to Hotel Captain Cook, Alaska for his August 26, 2014 presentation ‘Dispel Attendant Care Myths’. He explains the myths and the ways he overcomes the most challenging of the physical and psychological challenges he encounters in living with quadriplegia and also in running a successful business. He says what more he would like to do to and see done to provide more help to people living with quadriplegia so they can live fulfilling and successful lives. He shares his message for family caregivers with family member living with quadriplegia.
Dr. Noreen Gibbens is the lead audiologist for hi HealthInnovations, https://www.hihealthinnovations.com/, and a field team representative for the state of Tennessee. Her responsibilities include assisting patients with hearing testing, fittings and aural rehabilitation, and ensuring clinical quality companywide. She talks about her career and experience of family caregiving. She explains her work with the company especially as it relates to family caregiving, and the services it provides. She discusses the challenges created for family caregivers by hearing loss in children, aging adults, and family caregivers themselves. She explains ways of overcoming the challenges created for family caregivers. She says what more she would like to do and see done to provide more help in overcoming the challenges created for family caregivers of family members with hearing loss. She shares her message for family caregivers about overcoming the challenges of hearing loss.
Scott and Julia Duncan founded ‘Sharing The Burden’, http://www.sharingtheburdenradio.org/, which operates a 12-step program for all members of troubled families. In June, 2012, they lost their son, Sean, to an overdose of a powerful pain-relieving medication. Steve Arterburn is the founder and chairman of New Life Ministries and host of the # 1 nationally syndicated Christian counseling talk show ‘New Life Live!’, http://www.oneplace.com/ministries/new-life-live/”. They talk about their personal religion and how they became engaged with it, their work and their use of the internet. They explain what life recovery means for them and the people they serve. They discuss the Bible, biblical spiritual wisdom, the 12 steps to freedom, and spirituality. They explain what these mean for them and for others. They both say what they would like to do to enable life recovery through spirituality for more people, and share their messages for family caregivers grieving for family members.
Wendy Graham, MD CCFP FCFP, is CEO of Mihealth Global Systems Inc., https://mihealth.com/, which specializes in secure provider-patient communication, health system integration, and Personal Health Records. She explains digital patient engagement, her work as CEO, and the services provided. She describes the ways in which the services work for patients and their family physicians, and how the services protect the privacy, confidentiality and security of patients and their personal health information. She discusses the particular challenges in protecting the personal health information of family members being cared for by family caregivers, and how the services overcome these. She describes the ways the services work for and with family caregivers with family members with serious physical and mental illnesses who are being cared for at home. She says what more she would like to do to expand the services, and shares her message for family caregivers.
Sherie Vukelic is 28. Born in Toronto, she was raised in a loving, close-knit family. Her first pregnancy, with triplets, ended a day before her 25th birthday. She lost all three babies. She explains what ‘He Died on my Chest’ means. She describes the ways in which the babies’ deaths affected her and her husband, and how they keep them in their memories. She describes her non-profit business, ‘Forever Loved Angel Gowns’, http://foreverlovedangelgowns.com/. She says why she set it up, where she got the idea from, and who works with her. She recalls her reaction when she’d completed the very first Angel Gown. She discusses responses to the business, and says how it helps her and her family remember the babies, helps her family generally, and how it helps other mothers and families who have lost babies. She explains what more she would like to do to grow the business and the help she’d welcome. She shares her message for families who have lost babies like she and her family did.
Dr. Bill Bonner, http://ow.ly/yOvsW, is Associate Professor at the Paul J. Hill School of Business, University of Regina, Saskatchewan. He talks about his research on privacy and its historical perspective. He explains what’s meant by confidentiality, privacy, and security of personal health information. He says what can be learned from past experience about the harm that can occur from misuse or abuse of personal health information held in the electronic health record systems of hospitals, clinics and medical offices, and from misuse or abuse of personal health information that is accessed or held by police, government and insurance companies. He explains what hasn’t been sufficiently learned from past experience about the ways in which harm arises when personal health information is misused or abused. He says what he would like to do and see done to generate action to apply the lessons that haven’t been sufficiently learned. He shares his message for family caregivers.
Rolf Gainer, Ph.D., Diplomate ABDA, the Vice President of Rehabilitation Institutes of America, is also the founder and Chief Executive Officer of the Neurologic Rehabilitation Institute of Ontario (Canada), http://www.nrio.com/. He serves as the Chief Executive Officer at Brookhaven Hospital in Tulsa, Oklahoma, http://www.traumaticbraininjury.net/. He describes his career, experience with family caregiving and his work with serious head injuries. He highlights what begins when the person with the serious head injury survives the first night after the injury: challenges to physical and mental health, wellbeing and social contact, changes in the challenges as the person ages, and how the changes challenge family caregivers. He explains how the challenges can be overcome. He says what he would like to do and see done to help persons living and aging with the challenges of serious head injuries, and done to help their family caregivers. He shares his message for family caregivers.
Jeff Noble is Founder and CEO of ‘Noble Initiatives 2014’, that through presentations and online applications, http://fasdforever.com/, provides hope and education to people caring for someone living with Fetal Alcohol Spectrum Disorder (FASD). He talks about his own career and life with Attention Deficit Hyperactivity Disorder, and about his becoming the foster parent of a young man with a FASD, and how this changed his own life. He discusses the challenges that FASD creates for family caregivers caring for children, teenagers, and adults. He explains how his training programs help family caregivers caring at home for family members overcome the challenges they experience with FASD their family members are living with. He says what more he would like to do and see done by healthcare and social systems to help in the training of family caregivers. He shares his message for family caregivers embedded in his slogan ‘FASD is forever, frustration is not’.
Myra Goldick, http://www.myragoldick.com, as a child paralyzed by polio and meningitis at the age of ten, struggled to overcome a dysfunctional family life, extreme poverty, and homelessness. She describes her life with polio and her book, “Dancing on our Disabilities”, http://www.myragoldick.com/dancing-on-our-disabilities/, what she means by dancers and dancing, and how she learned to dance on her disabilities. She talks about the most challenging of the challenges that are experienced by the dancers and their families, and that are created by their families for the dancers in their efforts to survive and triumph over disabilities. She discusses dancers and their families learning to overcome by dancing the challenges to surviving and triumphing over disabilities. She says what more she would like to do or see done for the dancers and their families. She says what more she would like to do or see done for dancers who become family caregivers for aging parents.
Cindy Richman is the Senior Director of Patient and Healthcare Relations with the Multiple Sclerosis Association of America, http://www.mymsaa.org/, a national non-profit and leading resource for the entire MS community. She talks about her career and personal experience with family caregiving. She describes the work of the Association and her work with it. She explains the most challenging of the challenges experienced by individuals living with MS, experienced during pregnancy by women living with MS, and experienced as effects on the quality of life of individuals living with MS and their family caregivers. She discusses the ways in which family caregivers respond to the challenges created by MS for their family members and for themselves. She says what more she would like to do and see done by healthcare and social systems to help family caregivers caring for family members living with MS. She shares her message for family caregivers with family members living with MS.
Dr. Al Power, www.alpower.net, is an internist and geriatrician, clinical associate professor of medicine at the University of Rochester, and a Fellow of the American College of Physicians / American Society for Internal Medicine. He talks about his career, experience with family caregiving, and his book, ‘Dementia Beyond Disease’. He discusses the challenges dementia creates in the lives of individuals, the effectiveness of medical care, medications, and holistic approaches, and the burdens created for family caregivers. He explains the new approaches he advocates for meeting the challenges, including loss of memory and the ability of to make safe and appropriate decisions. He says what more he would like to do and see done by healthcare and social systems to promote the new approaches he advocates for meeting the challenges to enhancing the lives and wellbeing of individuals living with dementia. He shares his message for family caregivers with family members living with dementia.
Jim Wilson, President and founder of the Canadian Lyme Disease Foundation, http://canlyme.com/, is himself a victim of Lyme disease and the father of victims of Lyme disease. Rossana Magnotta established ‘The G. Magnotta Foundation for Vector-Borne Diseases’, http://www.gmagnottafoundation.com/, with the primary mission of helping to establish Canada’s first research facility for Lyme disease. They talk about the consequences of Lyme disease for them and their families, and their work with Lyme disease. They discuss the challenges they experienced in getting the information they needed when Lyme disease first entered their lives, and whether other people still experience the same challenges as they did. They explain the ways in which, through their work and that of their organizations, information challenges are being addressed. They say what more they would like to do and see done to address the information needs of individuals and families affected by vector-borne illnesses.
Tasha Kheiriddin, writer and broadcaster based in Toronto, Canada, highlights her career in law, politics, media, public policy and communications. She discusses her family caregiving for her daughter Zara, who lives on the part of the autism spectrum called Asperger’s syndrome. She describes Asperger’s syndrome and how it began for Zara. She identifies its challenges for young children and their family caregivers. She discusses the interventions and when and why these are needed. She describes the interventions Zara received, and explains which of her challenges changed for the better and which remained. She says what she thinks the future without the interventions would have held for Zara, and what it now holds thanks to the inventions. She says what more she would like to do and see done to address the needs of children who are living on the Autism Spectrum. She shares her message for family caregivers of children living their lives on the Autism Spectrum.
Emile Therien and his wife Beth are passionate spokespersons for organ, tissue and blood donation. He tells us the story of their daughter, Sarah Beth, who died of sudden cardiac arrest in June, 2006. He explains why he and his wife are passionate spokespersons for donations, and describes the benefits they see from these donations when made after cardiocirculatory death. He highlights the challenges and concerns that are expressed by potential donors and families, that seem to conflict with some family caregiving traditions, that are featured by the media, and that may hold back donations of organs, tissues and blood after cardiocirculatory death. He discusses ways of responding to the challenges. He says what more he and his wife Beth would like to do and see done, and by whom, to respond to the challenges and concerns. He shares his message for family caregivers who are asked to make decisions associated with donations of organs, tissues and blood after cardiocirculatory death.
Max Haroon, a social entrepreneur and an author, is a retired IT and e-Marketing specialist who always has been interested in holistic health and alternative medicine. He’s the author of 7 Steps to Dental Health, www.7stepsdentalhealth.com. He talks about his career and his own experience of family caregiving. He discusses his book and says why he wrote it. He explains holistic health, how he became interested in it, its key principles, and how it differs from conventional dentistry in its approach to mouth health. He describes the processes and causes of tooth decay and gum disease, and the tools and processes that he’s devised for a holistic approach to mouth and dental health. He says what more he wants to do and to see others do more to promote the holistic approach to mouth and dental health. He shares his message for family caregivers teaching their young children to care for their teeth.
Dr. Michael Gordon, http://www.drmichaelgordon.com/, is a medical professor, ethicist and one of Canada’s best-known geriatricians. He highlights his clinical work in advanced Alzheimer’s disease. He explains the medical and social challenges arising from high-risk behaviors and the problems persons with the advanced disease may have in making decisions. He discusses medications for treatment and control of high-risk behaviors, their effectiveness and their alternatives, and says what family caregivers should know. He explains the signs that a person’s problems with decision-making are growing, the medical advice he generally gives, the policies for care when the problems become serious, and the questions that family caregivers should ask. He says what he would like to do and see done to address the problems created by high-risk behaviors and by serious problems with decision-making on the part of persons with advanced Alzheimer’s disease, and shares his message for family caregivers.
Shannon McMillan is Coordinator of the Restoring Family Links Program of the Canadian Red Cross, http://ow.ly/xdFkb. She talks about her career and experience of family caregiving. She highlights the histories of the Red Cross and its Restoring Family Links Program. She explains the separations of the people the program serves, the effects on families and loved ones, and the humanitarian needs. She explains Family Links, how the program decides that one has been lost, and the procedure if the person sought is too ill to be connected with, or is detained in some way. She describes how the Link re-establishes contact, and the work involved. She highlights achievements of the program, recent examples in various parts of the world, and how suffering is relieved. She explains how the program’s services are requested and how people can help. She shares her message for family caregivers in Canada who are separated from their family members and loved ones by conflicts, disasters or migration.
Kamalesh Visavadia is the Director, (A) of Seniors Services India Rainbow Community Services of Peel, www.indiarainbow.org. He highlights his career and experience with family caregiving. He describes India Rainbow Community Services and his work. He explains elder abuse, and how and how well it’s recognized. He explains what is known about elder abuse in the communities served by the India Rainbow Community Services. He describes the ways in which elder abuse is confronted in its various forms including physical abuse, emotional abuse and neglect, and financial abuse. He says what more he would like to do and see done, and by whom, to help in confronting elder abuse. He shares his message for family caregivers caring for elders in the communities served by India Rainbow.
Donna Thompson began as actor, director and teacher. She became disability activist, author, consultant and writer in 1988, when her son Nicholas was born with severe disabilities. She blogs on The Caregivers' Living Room, www.donnathomson.com. She discusses her own experience of family caregiving, and her book, ‘The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving’, and why she wrote it. She compares Britain and Canada for the names given to family caregivers, the roles in which they are recognized, and the support they receive. She compares the two countries for the ways in which family caregivers work with the health care system and are accepted by it as members of the healthcare team. She says what more she would like to do and see done to help family caregivers in Canada benefit from the experience of family caregivers in other countries. She shares her message for family caregivers in Canada. She uses www.tyze.com for family-caregiving communications.
Matthew Miller has mild cerebral palsy. He’s a sales associate at Wal-Mart. He talks about his own experience with his own family’s family caregiving. He describes his book, ‘Overcoming Obstacles in Cooking’, http://ow.ly/x1hJ7, and what led him to write it. He explains the obstacles he experienced when he was learning cooking, the ways he learned to overcome these, and what he learned from his mother. He discusses the types of obstacles experienced by persons with disabilities in work that is new to them. He identifies the most important things that employers, managers, co-workers and fellow students should know about the ways in which persons with disabilities learn to overcome obstacles in work that is new to them. He says what more he would like to do and see done to promote better understanding of the ways persons with disabilities learn to overcome obstacles in work that is new to them. He shares his message for families, bosses, co-workers, teachers and students.
Nancy Errebo, Psy.D, http://ow.ly/wIOW8, is a psychologist from Missoula, Montana. Recently retired from the Department of Veterans Affairs, she has a private clinical practice providing Eye Movement Desensitization and Reprocessing Treatment (EMDR). She talks about her career, practice and experience with family caregiving. She explains the purposes and applications of EMDR. She discusses the ways post-traumatic stress disorders occur in and affect military personnel, police, and first responders, such as ambulance crews and firefighters, and children, adolescents and adults, and explains how their families are affected. She discusses the ways she uses EMDR for people and families affected by post-traumatic stress disorders. She says what more she would like to do and see done, and by whom, to promote EMDR as treatment for post-traumatic stress disorders. She shares her message for families and their family members who are living with post-traumatic stress disorders.
Enola G. Aird is a lawyer, activist mother, and founder and director of Mothers for a Human Future, http://mothersforahumanfuture.com/. Marcy Darnovsky, PhD, is Executive Director of the Center for Genetics and Society, http://www.geneticsandsociety.org/index.php. They talk about their lives and work, and the missions of their organizations. They explain the harmfulness, such as undermining of the dignity and well-being of children and the health and the safety of future generations, that they see in the ways in which human genetic engineering and assisted reproductive technologies are developing. They discuss the progress in combating the harmfulness and describe the steps they advocate to increase the progress. They say what they would like to do and see done by healthcare and social systems and the research community to combat the harmfulness of human genetic engineering and assisted reproductive technologies that they are most concerned about.
Dr. Lori Triano-Antidormi, PhD, is a Registered Psychologist in Ontario, Canada. She talks about her career, her life as a family caregiver, the killing of her son by a woman with mental illness, and the long-term effects on her of the killing. She explains how justice and healthcare systems respond to individuals with serious mental illnesses who have killed someone. She comments on the principle of “not criminally responsible”. She highlights the changes she wants to see in the ways justice systems deal with cases of individuals, and in the ways healthcare systems care for individuals, with serious mental illnesses who have killed someone or who could kill someone. She says what more she would like to do and see done to bring the changes she wants to see in healthcare systems. She shares her message for family caregivers worried about a family member who is living with a serious mental illness which could lead to violence towards or even the killing of someone.
Dr. Jehannine Austin is an Associate Professor at the University of British Columbia (UBC) in Vancouver, Canada, a Research Scientist at the BC Mental Health and Addictions Institute, http://www.bcmhari.ca/faculty/austin-jehannine.php, and graduate advisor for the UBC Genetic Counseling program. She talks about her career and her experience with family caregiving. She describes her work in genetic counseling and explains the purposes of genetic counseling. She describes how a strong family history of breast cancer becomes a worrisome family history, and highlights the various challenges for individuals, families, and future generations. She discusses the role of genetic counseling in helping individuals, families, and future generations with the challenges. She says what more she would like to do and see done to promote genetic counseling in helping families with worrisome genetic histories. She shares her message for people who believe they have worrisome family genetic histories.
Dr. Alice Virani specializes in the social, ethical and cultural implications of new genomic technologies. She holds a Masters in Public Health, a Masters in Human Sciences, and a PhD in medical genetics and applied ethics. She describes her work as a clinical ethicist. She explains family genetic data and why it raises questions of ethics. She says what she sees as the most important ethical questions that arise when family genetic data could be misused or abused, when it is widely distributed electronically and stored indefinitely in computers, and when people are asked to give consent to disclosure of their family genetic data to healthcare providers. She discusses the answers she sees to the questions. She says what more she would like to do and see done to answer the ethical questions that arise in connection with family genetic data in our increasingly computerized world. She shares her message for people who are being asked to give consent for use of their genetic data.
Dr. Chris Summerville is the CEO of the Schizophrenia Society of Canada, www.schizophrenia.ca, and Executive Director of the Manitoba Schizophrenia Society. Dr. Jehannine Austin, http://www.bcmhari.ca/faculty/austin-jehannine.php, is an Associate Professor at the University of British Columbia in Vancouver, BC, Canada, a Research Scientist at the BC Mental Health and Addictions Institute, and graduate advisor for the University’s Genetic Counseling program. They highlight schizophrenia’s statistics and genetics. They discuss what a family history of schizophrenia tells or does not tell the family about the likelihood that schizophrenia will develop in its current or future generations, about care, such as genetic counselling, early medical diagnosis, responding to early signals, and about anticipating social challenges. They say what they would like to do and see done by social and healthcare systems to bring increased help and hope for families with a family history of schizophrenia.
Scott and Julia Duncan founded the Fellowship, ‘Sharing The Burden’, http://www.sharingtheburden.ca/, which operates a 12-step program for all members of troubled families. Brent Haldane decided to volunteer in the prison system, inspired by his Aunt Aunt Lois, a Christian missionary in Ethiopia. Scott and Brent talk about their lives and work. They explain the main problems for which Sharing the Burden brings help, how the help and hope are provided, and the main problems for which help is available to prisoners and detainees, and how the help and hope are provided. They say how they would like to see Sharing The Burden bring increased help and hope for prisoners and detainees. They explain what they would like to do and see done to bring increased help and hope for prisoners and detainees for the problems that brought them into the justice system, for their reintegration into society, and for troubled young people so they stay out of custody.
Dean M. Hartley completed his Ph.D. in Neuroscience at Stanford University in 1991 and is Director of Science Initiatives at the Alzheimer’s Association, www.alz.org. He describes his work with the Association, mentions his personal experience with family caregiving, and explains the Association’s mission. He highlights for women the key facts and figures in the Alzheimer’s Association’s March 2014 publication, ‘Summary of Alzheimer’s Disease Facts and Figures’. He discusses the challenges he sees arising from the facts and figures as these relate to the health of women generally and to women as family caregivers, to healthcare systems and services, and to the societies of North America. He describes what he sees as most effective responses to the challenges. He says what he would like to do and see done by others to help with the challenges that he foresees. He shares his message for women and men who are family caregivers for family members living with Alzheimer’s disease.
Monica Draper, www.draperwebdesign.com, talks about her career and experience with family caregiving. She describes her experience with an alleged fraudster, and explains the effects that this experience had on her. She discusses her own experience and what she knows of the experience of other women in getting action from the police and justice systems. She identifies what she sees as the most important obstacles she and others face in getting money back from fraudsters. She explains how she wants to use the web to help women unite to defeat fraudsters, to overcome or work around the obstacles she and others faced in getting action, and discusses the progress she’s made and what more she intends to do with the web. She says what more she would like to see done by the police, justice systems, governments and the finance and business sectors to help protect people like her against fraudsters. She shares her message for people like her about protecting themselves against fraudsters.
Sandra Champlain, http://www.sandrachamplain.com/, authored 'We Don't Die - A Skeptic's Discovery of Life After Death, published In January 2013. It became a #1 best-seller in the United States and Canada. She talks about her life and experience with family caregiving. She describes her book and says why she wrote it. She explains her book’s statement that she was plagued by a lifelong fear of death and dying. She talks about the search she started, why she started it, what she discovered, and the effects on her of her discoveries. She explains the new understanding she gained from her discoveries about death and grief and what happens after these. She says how she does or could link her understanding with spirituality. She says what more she would like to do to explain her understanding of what happens after death and grief, to link her understanding with spirituality, and to share her message for people like she once was.
Rosanna Penilla-Bharucha owns The Boomerpreneur, http://theboomerpreneur.ca/. She also is the Executive Director at Retire-At-Home Services in Mississauga-Milton, http://www.RetireAtHomeMississauga.com. She talks about her career as an entrepreneur, her experience with family caregiving, and Boomerpreneuring and her own work in Boomerpreneuring. She describes Boomerpreneurs, discusses Boomerpreneuring for family caregivers and how it meets their needs, and explains how Boomerpreneurs get started. She identifies the most challenging of the challenges that Boomerpreneurs confront in choosing the type of business they want to own, in considering finances and financing, and in building their businesses. She explains effective responses to the challenges. She says what more she would like to do and to see others do to help Boomerpreneurs. She shares her message for family caregivers thinking of becoming Boomerpreneurs.
Barb Lebo holds the MBA and BComm degrees and describes herself as the Chief Encouragement Officer of Lebo Media Services, http://www.lebomedia.ca/. She talks about her career, experience of family caregiving generally, of being the mother of a child who lives with autism, and of getting help for her family caregiving for her child. She discusses her experience of caring provided by healthcare, social and educational systems, healthcare professionals, and charities involved with autism. She explains her suggestions for enhancing family caregiving for children with autism, caring by healthcare, social and educational systems, by communities, parents’ groups and organizations providing spiritual support. She says what more she would like to do and see done by the healthcare professions to help family caregivers caring for children living with autism. She shares her message for family caregivers caring for children living with autism.
Lisa Feldstein is the principal lawyer at Lisa Feldstein Law Office, http://familyhealthlaw.ca/. She practices family health law, which includes providing advice in reproductive law, mental health law, privacy, elder law and other health law matters. She talks about her career, experience with family caregiving, work in family health law, and one of her newspaper articles. She discusses challenges that family caregivers experience when they see warning signs that a family member may be starting with psychosis or psychotic episodes, when they try to get help, when the police are alerted, and when they try to communicate with healthcare via its privacy systems. She describes effective responses to the challenges. She says what more she would like to do and see done to help family caregivers caring for family members affected by psychoses and psychotic episodes, and to make privacy laws more supportive of family caregivers’ information needs. She shares her message for family caregivers.
Shauna Johnston, RN, BScN, BSc, originally from Cape Breton Island, is a Mental Health and Addictions nurse with the Mississauga Halton Community Care Access Centre, www.healthcareathome.ca/mh . She talks about her career, personal experience of family caregiving, and her work with the Centre. She highlights the types of mental health problems she meets. She explains the challenges that mental health problems create for young people and their family caregivers. She discusses the challenges, including privacy restrictions, in communicating with young people who are experiencing mental health problems, with their families, and with others. For the challenges, she highlights the responses that are effective. She says what more she would like to see done to help with the challenges encountered by young people and their family caregivers. She shares her message for family caregivers and their young family members about the role of nurses in caring for young people with mental health problems.
Thubten Tengye has been a practicing Buddhist for nearly 10 years. He has a strong interest in Buddhist philosophy and meditation practice. He is particularly interested in the parallels between Buddhist and Western philosophy. Ruwan Jayatunge graduated as a physician from the Vinnitsa National Medical University Ukraine and joined the Ministry of Health, Government of Sri Lanka. He worked closely with Sri Lankan war veterans and civilians affected by the war. They each talk about their careers and the role of Buddhism in their lives. They explain the key principles of Buddhism, psychotherapy, and Buddhist psychotherapy. They describe how these relate to and help individuals and families living with the challenges of traumatic stress disorder and post-traumatic stress disorder. They say what they would like to do and see done to bring the help of Buddhist psychotherapy to more people experiencing the challenges they’ve identified.
Dr. Tiffany Chow is a Senior Clinician-Scientist at the Rotman Research Institute,and staff Behavioural Neurologist at Baycrest's Ross Memory Clinic, www.baycrest.org/chow-lab. Robert S. Wilson, PhD, is the senior neuropsychologist of the Rush Alzheimer's Disease Center, http://www.rush.edu/rumc/page-1099611539759.html. They talk about their careers and what prompted their interest and research in dementia and Alzheimer’s disease. They each describe their research and work as it relates to dementia and Alzheimer’s disease. They highlight what family caregivers should know about the causes, complications and other disorders associated with dementia and Alzheimer’s disease. They say what family caregivers should know about the trends in occurrence of Alzheimer’s disease and explain what these trends mean for protection and prevention. They identify key things that family caregivers should know about medical and psychological treatment and family caregiving for Alzheimer’s disease.
Dr. Ben Levin retired in 2014 as a Professor in Education Leadership and Policy at the Ontario Institute for Studies in Education, University of Toronto. He talks about his career and experience with family caregiving, his research and the work he did with schools. He describes what he sees as the most challenging of the challenges in the school environment that children’s mental health problems create for schools, for their families, and for the children themselves. He explains what he sees as the most effective responses in the school environment to the challenges for schools, families and children. He says what more he would like to see done in the school environment to help with the challenges created by children’s mental health problems for schools, families and children.
‘Heroes of Family Caregiving’ celebrates the value of family caregiving by recognizing the work of family caregivers and by giving voice to their stories. And by family caregivers’ recognizing the work of healthcare professionals. Poonam Virdi has taken complete family caregiving responsibility for her father, who lives with Alzheimer’s disease and Parkinson’s disease, since November 2012. Valerie Speiran was nominated by family caregivers for her outstanding work as a care coordinator at the Mississauga Halton Community Care Access Centre, http://healthcareathome.ca/mh/en. Val describes her work and the project for recognizing family caregivers. Poonam talks about her family caregiving. They both say what more they would like to see done to help family caregivers facing the challenges of serious health problems in a loved one.
Kari Gray faced terminal cancer in her 20's. She got a second chance at life because, she says, alternative medicine saved her. Her mission is to be the ‘Voice for Choice’ with her own business, Green-Surance, www.green-surance.com. She describes her life before and after diagnosis, and her experience of doctors and healthcare systems. She explains holistic health and alternative medicine, how these relate to each other, and how these are viewed and supported by healthcare systems. She explains why she started Green-Surance, and the services it offers. She says when and why she would recommend turning to holistic health and alternative medicine, and when she would recommend continuing with conventional medical care. She says what more she would like to do to and see done by healthcare systems to help people get more from holistic health and alternative medicine. She shares her message for family caregivers who want to know more about holistic health and alternative medicine.
Dr. Bill Bonner is Associate Professor at the Paul J. Hill School of Business, University of Regina, Saskatchewan, http://is.gd/HozMoL. Ma’n H. Zawati, LLB, LLM, lawyer, is Academic Coordinator of the Centre of Genomics and Policy at McGill University, www.genomicsandpolicy.org. They highlight their careers and work in protecting personal health and genetic heritage information. They identify challenges to privacy with the increasing use of big computers. They discuss the most challenging of the challenges for individuals deciding whether to consent to computer compilations of their personal health and genetic heritage information. They discuss the effects on privacy with the increasing use of big computers, and explain what they think individuals should know about the need for protection. They say what more they would like to do through their work and see done by governments and healthcare systems to improve protection of personal health information and genetic heritage information.
Karen Li has been St. Peter's Parish Nurse since January 1, 2011, http://www.stpeterscobourg.org/. Pat Weller’s major activity for the past 20 years has been establishing and helping to run NeighbourLink Northumberland, http://www.neighbourlinknorthumberland.ca/. They talk about their lives, experience in caring, and their work in parish caring for communities. They discuss the types of challenges experienced by families, children and adolescents, adults and aging adults whom parish caring cares for. They explain how parish caring in communities helps such people in overcoming the challenges. They say what more they would like to do and see done through parish caring in communities to help families, children and adolescents, adults and aging adults with the types of challenges they’ve described. They share their messages for family caregivers, families and family members about parish caring in communities.
Bronwyn Funiciello became blind at age 11, is an elected trustee, Ottawa-Carleton District School Board, http://www.ocdsb.ca/Pages/default.aspx. She strongly advocates for persons with disabilities. Rabia Khedr, who is blind, has her own company, diversityworX, www.diversityworx.com/, is Executive Director of the Canadian Association of Muslims with Disabilities, and a board member of the Ontario Women's Health Network. They talk about their own careers, living with blindness, and their work. They discuss the challenges encountered by young people seeking careers who are living with blindness, and the types of careers in which they experience the greatest difficulties. They explain ways for overcoming the challenges and highlight help provided by schools and school boards, and by private and non-profit sectors. They say what more they would like to do through their work and share their messages for families with young people who are living with blindness and who are seeking careers.
Mary Ellen Chater has an Honours BA in Arts Administration. She held a senior position in conference development until 2003 when her husband was diagnosed with cancer. She continued work as a conference developer from home so she could be her husband’s family caregiver until his death. She discusses her life and career, her reasons for leaving her job and for looking for another. She explains how her family caregiving for her husband could have affected her job hunting. She talks about the challenges she’s experienced and confronted or could have confronted in job hunting. She mentions the alternatives she’s considered, the ways she approached these, and the reasons for her decisions. She shares her advice to people in her situation about overcoming the challenges she’s experienced in job hunting. She explains the things that she believes would help people in her situation find the work they need.
In August of 2003, Mariana Bracic, a successful career lawyer, found herself at the end of her parental leave with her twins. Also in 2003, she opened MBC Legal, www.mbclegal.ca, an employment law firm and, subsequently, MBC Information Solutions Inc., a legal information company. She talks about her legal career up to the point at which she went on parental leave, and the early period of her life as family caregiver for the twins. She explains what decided her to set up her own law firm. She discusses the challenges she experienced in setting up and running her own law-firm and her legal information business. She explains the challenges for her and her husband in family caregiving for the twins, and the ways they both confronted and overcame the challenges. She says what she would like to do and to see done by employers and others and to help families make decisions when both spouses work and parental leave is coming to an end. Her babies are the twins, the family and the business.
Zig Misiak, www.realpeopleshistory.com, sees himself as a student of Native/First Nations history and culture. He speaks about his life, career and contact he’s had with veterans of wars. He explains his work studying First Nations history, how he got started with it, and who he speaks for in this work. He says why he does this work and describes the resources he uses. He discusses the War of 1812, the role of First Nations warriors, and what’s known about the deaths and injuries they sustained. He discusses what is known about the physical, spiritual and community-based care provided to First Nations warriors injured in the War of 1812. He says what more he would like to do and see done by others to promote understanding of the role and fate of First Nations warriors in the War of 1812. He highlights what we can and should learn from the history of the First Nations warriors in the War of 1812.
Linda Bell is the CEO of Bellwood Health Services, www.Bellwood.ca, an addiction treatment centre in Toronto, Canada, accredited with ‘Exemplary Status’. Ernest W. Matton (Little Brown Bear), ernest@look.ca, is a Métis helper and guide who inspires living in today’s hectic world. They describe their work and the role of spiritual support in their work. They discuss the challenges that delay or even prevent recovery of children, adolescents and adults from addictions. They explain the ways in which spirituality helps overcome the challenges that delay or even prevent recovery from addictions, and highlight some of the successes they attribute to the inclusion of spirituality. They talk about things they would like to do through their work to encourage the inclusion of spirituality in more programs intended to help recovery from addictions. They share their messages about spirituality for families with family members who are seeking help in recovering from addictions.
Bruce Ritchie is Moderator and CEO of FASlink Fetal Alcohol Disorders Society, http://www.faslink.org/. He’s a single father of a son diagnosed as an infant with fetal alcohol syndrome. Thelma Vincent, advocate and educator, is President of Alberta’s Fetal Alcohol Support Society, http://www.fassalberta.ca/contact.php, a parent-driven nonprofit organization for persons and families affected by a fetal alcohol spectrum disorder. They talk about their lives, careers and experience with family caregiving for fetal alcohol spectrum disorders. They highlight their work with their organizations. They discuss caring for fetal alcohol spectrum disorders, and the challenges these create for family caregivers. They discuss caring about fetal alcohol spectrum disorders and the challenges these create. They say what more they would like to do and see done to bring more help for children, adolescents and adults living with fetal alcohol spectrum disorders and for their family caregivers.
Jacqueline Marcell wrote 'Elder Rage', www.ElderRage.com, her best-selling book, out of her experience of caring for her parents with Alzheimer's disease which went undiagnosed for over a year. She talks about her professional career, her work, her book and her life as a family caregiver involved with family members with Alzheimer’s disease. She explains the challenges created by Alzheimer’s disease for elders diagnosed with it, in getting medical treatment for them, and in getting help for their family caregivers. She describes ways in which the challenges created for elders can be responded to, and the most successful ways for getting the best of healthcare from healthcare systems for elders and their family caregivers. To address the challenges, she says what more she would like to do help elders living with Alzheimer’s disease and to help their family caregivers, and what more she would like to see done healthcare and social services to help the family caregivers.
Jane Saundercook is the Founder and President of Horses Help Canada, http://horseshelpcanada.com/, a non-profit orgnization which provides horsemanship-on-the-ground workshops for youth living with autism. Philip Ralph, CD, is the Regimental Chaplain to the 32 Combat Engineer Regiment in Toronto and National Program Director, Wounded Warriors Canada, http://www.woundedwarriors.ca/. They talk about their lives, careers and experience with family caregiving. They describe their work with Horses Help Canada and Wounded Warriors Canada and their collaborations. They discuss the types of mental health challenges for which horses can help children and adolescents, military personnel, and their family caregivers. They explain the ways in which horses help with the mental health challenges. They say what more they would like to do and see done to bring more help from horses for mental health challenges affecting children, adolescents, and military personnel, and for their family caregivers.
Marcy Darnovsky, PhD, is Executive Director of the Center for Genetics and Society, http://www.geneticsandsociety.org/index.php. Jeff Nisker, MD PhD FRCSC FCAHS, is a Professor of Obstetrics-Gynaecology at the Schulich School Medicine & Dentistry, Western University, and Scientist, Children’s Health Research Institute, http://publish.uwo.ca/~jnisker/. They highlight their lives, careers and experience with family caregiving. They describe their work with their organizations. They discuss the benefits and risks associated with the use of families’ genetic inheritance data for research and for medical treatment. They explain why, and how, family caregivers should care for their families’ genetic inheritance data when it is used for research or for medical treatment. They say what more they would like to do and see done by government privacy agencies, hospitals and physicians to help family caregivers care for their families’ genetic inheritance.
Isaac Weinroth is the Executive Director of One Kenton Retirement Residence, http://www.onekenton.ca/. His personal mission is to put tender loving care into long-term care. He talks about his life, career and his involvement with caregiving. He describes One Kenton Alzheimer’s Centre of Excellence and its work. He explains why it was created, how far along it is in its development in January 2014, and its collaboration with other organizations focused on Alzheimer’s disease. He identifies the greatest challenges created for people diagnosed with Alzheimer’s disease, treatment and care services, and for family caregivers. He explains the ways in the Centre approaches these challenges through its care, treatments, supports the family caregivers of individuals in its care, and the innovations and research that the Centre undertakes. He talks about the things he plans to have achieved by January 2015 in care and treatment, innovations and research, and support for family caregivers.
Louise Vetter is the Chief Executive Officer of the Huntington’s Disease Society of America, http://www.hdsa.org/. Bev Heim-Myers is Chief Executive Officer and Executive Director of the Huntington Society of Canada, www.huntingtonsociety.ca. They explain their Societies’ work generally and in protecting the genetic data of families with histories of Huntington’s disease. They discuss genome projects and the benefits and challenges that these create, especially in protecting the privacy of the genetic heritage of families with histories of serious illnesses. They examine ways of overcoming the challenges to privacy protection that arise when there is reliance on the consent of individuals and their families with histories of serious illnesses. They say what they would like to see done in the USA and Canada to enhance education of the public, healthcare professionals, and hospitals about the importance of protecting the genetic heritage of families with histories of serious illnesses.
Kerry Duncan [T: @Kerry_Duncan] has long been involved in disability advocacy and support work. Her older brother Todd lives with developmental disabilities. She talks about her life, career and experience with family caregiving. She explains her work with Recreational Respite Inc, http://recrespite.com/, which developed the RecreACTIVE program, and discusses the needs for care and support that arise for children, adolescents and adults with disabilities, and for their family caregivers. She explains the idea of the RecreACTIVE program, and describes the response to the idea at the public discussion at the Blue Mountains Town Hall Council Chambers on January 24, 2014. She explains the program’s “leisure and learn model” and how this benefits children, adolescents and adults. She summarizes the next steps at the end of January 2014 for the RecreACTIVE program, and the benefits she would like to see flowing from the program by the end of January 2015.
Melanie Taddeo, at the age of 21, suffered a massive stroke that left her completely paralyzed on her left side and legally blind. She founded Connect4Life, www.connect4life.ca, to provide programs that promote independence for people with disabilities. Jerry Ford who grew up in a small full-of-promise city in Ontario. At the age of 28 his storybook life was severely affected by the onset of multiple sclerosis. They talk about their lives, careers, their challenges and their work. They explain the status of Connect4Life, how it raises the funds it needs, how it will set up Voices4Ability Radio, www.voices4ability.com, and what services it will provide for people living with blindness. They discuss building support, obtaining the necessary technology, getting publicity, and achieving financial sustainability for it. They explain how far along they are at the end of January 2014, and where they intend to be at the end of January 2015, and say who will benefit from these achievements.
Dr. Michael Gordon, http://www.drmichaelgordon.com/, is a medical professor, ethicist and one of Canada’s best known geriatricians. He talks about his life, career, experience of family caregiving and his medical work in geriatrics and palliative care. He describes the 3rd edition of the book, ‘Parenting Your Parents’, he co-authored in 2013, www.parentingyourparents.ca. He highlights effects of medical conditions that are especially challenging for persons as they age. He identifies the challenges for parents parented by family caregivers and by family caregivers parenting parents, and says why these are so challenging. He highlights the most helpful of the medical treatments for the effects of the medical conditions associated with aging. He explains the types of support needed by parents who are being parented and by their family caregivers. He says what more he would like to do and see done by social and healthcare systems to help family caregivers parenting their parents.
“Diet” Stroeh’s beloved wife, Margaret, was stricken with cancer. He became her family caregiver, walking the road of anguish and fear. He talks about his life, career and married life and his book, ‘Three Months: A Caretakers Journey from Heartbreak to Hope’, www.threemonthsbook.com. He describes the very first day that he and his wife set out on their journey with pancreatic cancer, and the things they talked about. He explains the challenges created for him and his wife during their journey together with the pancreatic cancer. He describes the ways they overcame or worked around the challenges during their journey with the pancreatic cancer. He says what more he would like to do and to see done by healthcare and social systems to increase help for family caregivers and their family members who are on their journeys with pancreatic cancer. He shares his message for family caregivers and their family members travelling their journeys with pancreatic cancer.
Connie Magro is Vice-President of the European Federation of Associations of Families of the Mentally Ill, www.eufami.org. Kevin Jones is the Federation’s Secretary General. They talk about their lives, careers, experience with family caregiving and their work with the Federation. They describe the history, work and help for family caregivers provided by the Federation and its member Associations. They explain the Federation’s work with the European Union and the World Health Organization. The provide examples of projects focused on children and adolescents, adults living with schizophrenia, and young persons and adults living with depression and related conditions. They discuss the Federation’s plans for 2014, and say what they would like to see happen at the level of the European Union. They highlight what they would like to see done to strengthen the Federation’s member Associations, and to see done by the member Associations to strengthen their members’ services.
Micheal Vonn, a lawyer and the Policy Director of the British Columbia Civil Liberties Association, http://bccla.org/, talks about her choice of civil liberties and human rights for her career. She explains the liberties and rights declared for Canada and for the USA. She discusses circumstances in which loss of privacy of genetic information would undermine the human rights and civil liberties of an individual and the individual’s descendants, parents, siblings and genetic relatives, and the circumstances that loss of privacy could become government spying or prying. She highlights the ways in which genetic information privacy could be protected. She says what she would like to do and to see done to increase protection of genetic information privacy in North America. She shares her message for individuals and families about protection of their genetic information, and says whether she would encourage them to take notice of the work of the British Columbia Civil Liberties Association.
Alicia Jones is the proud owner of Destination Fit, www.destinationfit.ca, a mobile personal training company that makes fitness convenient for everyone. She talks about her life, career, and experience with family caregiving, and describes her work as an expert in personal fitness. She explains why hard-pressed family caregivers caring for family members with serious or medically incurable illnesses seek her help with their personal fitness. She describes fitness-related challenges experienced by family caregivers who are still in school or who have jobs, and by family caregivers who are themselves seniors or who live with health challenges of their own. She discusses the ways in which fitness training helps family caregivers in overcoming fitness-related challenges. She says what more she would like to do and see done to bring more help to family caregivers through fitness training, and shares her message to family caregivers about caring for themselves through fitness training.
Tim Manson is owner of Innovative Horizons, www.innovativehorizons.com. His own story of overcoming Multiple Sclerosis inspires his listeners to overcome the obstacles life places in their paths. He talks about his life with MS and his work with Innovative Horizons. He describes his wife’s life with him as he lives with the MS. He highlights the most challenging of the challenges that MS creates for him, and for his wife as his family caregiver. He describes the most challenging of the challenges that the MS creates for the quality of life for him and his wife. He explains the ways in which his wife helps both of them overcome the physical, emotional and quality-of-life challenges that the MS creates for them. He says what more he would like to do and to see done bring more help to family caregivers like his wife who are caring for family members living with MS. He shares his message to his wife, his family caregiver, and other wives like her.
Dr. Gordon Atherley, docg@familycaregiversunite.org, is the host of Family Caregivers Unite that, by the end of 2013, had broadcast 274 Episodes. He explains why he founded the show, and describes what he’s learned from family caregivers who’ve been his Guests. He highlights what family caregiving involves, explains what ‘family’ means, discusses the type of people who are family caregivers, and estimates the size of the family caregiver community. He highlights the challenges and barriers widely experienced by family caregivers at the end of 2013 in North America. He speaks about his own experience with family caregiving. He discusses the ways family caregivers overcome and need help in overcoming the challenges and barriers they encounter. He says what more he would like to see done by healthcare and social systems, by family caregivers themselves, and by him personally to advance help for family caregivers caring for their families’ health, wellbeing and quality of life.
Fire Chief Simon Grypma has 37 years of Service with the Nelson, British Columbia, Fire Department, http://ow.ly/rUV6R. Alan Majer is the founder of Good Robot, which produces Stove Reminder www.StoveReminder.com. They talk about their lives, careers and, respectively, their work as Fire Chief, and with Goodrobot. They describe the pilot project aimed at reducing kitchen fires, highlight what they want the project to achieve and discuss their next steps. They explain home and kitchen fire risks that family caregivers should be aware of especially for elderly people, and the ways technology helps combat the risk. They discuss the things they would like to see develop in firefighting everywhere to combat the fire risks to aging populations. They share their messages for family caregivers concerned about kitchen fire risks for their aging family members.
Nancy Coldham is the founding partner of a leading Canadian public affairs consulting firm, The CG Group, www.cggroup.com. She talks about her career, her experience with family caregiving, and her research project ‘Rwandan Women Entrepreneurs: The Gendered Enterprise of Nation-Building. She explains the challenges and barriers that she found were experienced by women in the role of family caregivers caring for their families and their family members’ health, wellbeing and quality of life. She says what more she would like to see done by healthcare and social systems to advance help for Rwandan and North American women family caregivers in overcoming the challenges and barriers she identified in her research. She says what more she would like to do to help women with their family caregiving and with their nation-building.
Gail Elliot, Gerontologist & Dementia Specialist, is the Founder and CEO of Dementiability Enterprises Inc., www.dementiability.com. She describes her life, career, her experience with family caregiving, and her work as a gerontologist and dementia specialist. She explains her involvement in China, specifically Hong Kong. She summarizes her impressions of family caregiving for the elderly, and the elderly with dementia, in modern Hong Kong, and the most challenging of the challenges experienced by family caregivers in Hong Kong. She discusses her impressions of the support provided in Hong Kong for family caregivers in overcoming the challenges they experience. She highlights her impressions of the burden of family caregiving on families in Hong Kong. She compares her impressions of the similarities and differences in family caregiving in Hong Kong and in Canada, and says what Canada could learn by studying Hong Kong’s modern approach to family caregiving.
Jennifer Lee is Project Manager, Work With Us Project, www.workwithus.ca, Mood Disorders Society of Canada. Lynn Moore, also with the Project, is the Director, Programs and Services at The Arthritis Society of Canada. The Project is a workplace-based program that supports Canadians living with depression and or arthritis by giving them the tools to actively self-manage, lead healthier lives and fully engage in work. Jennifer and Lynn talk about their lives and their work with their Societies and with their Project. They explain the most challenging of the challenges created by depression and or arthritis for working people, for their employers and for their family caregivers. They discuss the ways and tools with which the Project will help overcome the challenges. They say what they would like the Project, when it comes to an end, to have achieved for working people affected by depression and or arthritis, for their employers, and for their families and family caregivers.
Rabia Khedr is Executive Director of the Canadian Association of Muslims with Disabilities, a board member of the Federation of Muslim Women and the Ontario Women's Health Network. She has her own company, www.diversityworx.com/. She talks about her life, career, work and experience of family caregiving. She describes the challenges experienced by family caregivers in diverse communities caring for aging parents or for children and young adults who have serious health problems. She highlights the challenges the family caregivers experience. She explains how the family caregivers overcome their challenges and describes the help they need in caring for family members and for themselves. She says what she wants to do and see done by healthcare and social systems to provide more help for the family caregivers. She shares her message for family caregivers in diverse communities who are just starting out on the road of family caregiving for family members with serious health problems.
Eleanor Millard is a novelist, researcher and social activist, http://www.eleanormillard.com/. A Member of the Legislative Assembly for Ogilvie (Dawson City), Yukon, 1974-1978, she became Minister of Education, Recreation, Housing and Employment. She talks about her life, career as author and researcher, and her experience with family caregiving. She describes her novel ‘Summer Snow’ and her research report ‘Kinship Care in the Yukon’. She discusses the challenges experienced by Amanda, the novel’s principal character, after adopting a young girl with fetal alcohol spectrum disorder. She describes the challenges they experience together. She explains how they confront these challenges the help they received, and the effect on them both of recognizing the girl’s abilities. She says what more she would like to do and see done to provide more help to family and kinship caregivers and their family members in confronting challenges like those experienced by Amanda and her daughter.
Dr. Sarah Y. Vinson, www.drsarahvinson.com, is a psychiatrist specializing in child and adolescent, and adult and forensic psychiatry. She’s based in Atlanta, GA. Anika Francis, www.anikafrancis.com, is author, instructional designer, Yoga Therapist, and owner of the Atlanta-based company, Edspire, LLC. They talk about their lives and work, and explain what resilience means for persons with serious mental illnesses and their family caregivers. From the perspectives of family caregiving and psychiatry, they discuss challenges experienced by family caregivers and family members living with mental illnesses for which resilience is challenging, important or even essential. Also from the perspectives of family caregiving and psychiatry, they explain ways of strengthening resilience in family caregivers and family members living with mental illnesses. They say what they would like to do and to see done to advance help for developing resilience in family caregivers and their family members.
JR Harding is a recognized disability leader from both personal and professional experiences, www.jrharding.com. Pat Hughes founded Inclusion Solutions, www.inclusionsolutions.com. They describe their lives and work. They highlight federal legislation as it relates to seniors and drivers with disabilities at self-service gas stations, and explain the progress that’s being made in Florida. They explain the challenges associated with safety and service, signage and communication, design of cars and vans, design of gas pumps that are experienced by seniors and drivers with disabilities. They discuss ways that seniors and drivers with disabilities confront the challenges and how Inclusion Solution’s technologies help them overcome the challenges. They say what more they would like to see done by governments and gas stations to accelerate progress in confronting the challenges experienced by people with disabilities in self-service gas stations, and explain what more they would like to do.
Eric Tripp-McKay is the Executive Director of Peace Ranch, Caledon, Ontario, Canada, http://www.peaceranch.com/. He’s worked in the community mental health sector for 25 years. He talks about his life, career and experience of family caregiving. He describes Peace Ranch, its mission and work. He discusses the mental ill-health that Peace Ranch addresses and the challenges that it creates for persons living with it and for their families and family caregivers. He highlights challenges that the mental ill-health creates for healthcare and social systems. He explains the ways Peace Ranch helps to addresses the challenges. He says what more he would like to do through his work as Executive Director, Peace Ranch, and to see done by the healthcare and social systems to provide more help to meet the challenges that mental ill-health creates. He shares his message for family caregivers just starting out on their journey of caring for a family member living with the mental ill-health.
Lori La Bey is the Founder of Alzheimer’s Speaks, www.AlzheimersSpeaks.com, an advocacy group in the US that provides education and support for the Alzheimer’s disease and dementia community. Michael Ellenbogen was diagnosed with younger-onset Alzheimer’s disease in 2008. He founded the Michael Ellenbogen Movement, http://www.michaelellenbogenmovement.com/. They describe dementia friendly communities, and explain why and how they became involved. They explain who a dementia friendly community engages with. They identify the challenges that dementia creates for persons, families, family caregivers, healthcare, social and justice systems, and communities, and explain how dementia friendly communities help in overcoming the challenges. They say what more they would like to do to accelerate progress in developing dementia friendly communities. They share their messages for families who are concerned about the possibility of dementia challenges developing in their family members.
Dr. Karen Talmadge is 2013 Chair of the Board of the American Diabetes Association, http://www.diabetes.org/. She received her PhD from Harvard University. She has a daughter with type 1 diabetes. She describes her career and her experience of raising a child with diabetes. She explains her work with the American Diabetes Association. She highlights the effects of diabetes on children. She identifies some of the most challenging of the challenges created by diabetes for pre-school children and school-age children, and their parents. She discusses the ways in which the challenges are confronted. She explains the things she would like to do through her work with the American Diabetes Association to provide more help to parents in confronting the challenges of raising children with diabetes. She says what more she would like to see done by healthcare and school systems. She shares her message for parents who have recently learned that their child has diabetes.
Glynnis Walker is a radio talk show host and the best-selling author of eight books. She’s spent much of her life as a family caregiver. She describes her personal story, work and family caregiving for her mother up to the point of her death. She explains how her family caregiving then changed. She describes the act of the closing of her mother’s home, what she had to do, and the most challenging of the emotional challenges she experienced. She shares her advice for family caregivers faced with closing the home of a loved parent in the best possible way for everyone involved, and to help them confront the challenges to their own and their families’ lives during and following the closing. She says what more she would like to do through her work as a writer and broadcaster and to see done by lawyers, financial professionals and community organizations. She shares her message for family caregivers who are just starting out on their journey of closing the home of a loved parent.
Linda Bell is the CEO of Bellwood Health Services, www.Bellwood.ca, an addiction treatment centre in Toronto, Canada. She talks about her family history, her life, career, and experience with family caregiving. She explains her work. She discusses the most challenging of the challenges that arise for family caregivers, especially parents and spouses and partners, in recognizing and responding to addiction problems in family members. She explains the help needed by family caregivers in overcoming these challenges. She says what more she would like to do through her work to accelerate progress in help for family caregivers in recognizing and responding to addiction problems in family members, and in overcoming the challenges for their family members and for themselves. She shares her message for families who are concerned about the possibility of addiction problems in family members.
Rebecca DiFilippo founded a successful prepress business in 1986, which she successfully operated for over 12 years. In 2001, she was hospitalized with clinical depression and struggled with a long battle back to full recovery. She describes her life prior to and during the depression and her success after the depression. She discusses the most challenging of the challenges she experienced emotionally and with her moods, in her actions and activities, and in her attitudes and reactions to other people. She talks about the help needed to overcome the challenges created by depression so that success can be achieved, and where the help is to be found. She says what more she would like to do through her work as publisher of Moods Magazine, “moodsmag” on the Internet, and to see done by healthcare and social systems and community organizations. She shares her message for people and their families who are just starting out on their journey with depression.
Rubin Friedman, born in a displaced persons (DP) camp in Linz, Austria, grew up in Toronto, Canada. Most recently he was appointed to the Board of the Canadian Race Relations Foundation and served as its Principal Operating Officer. He talks about his life as the child of an immigrant family. He describes his experience of fitting in and what fitting in meant to him. He explains his adult-life work as an author of several books, rubinathome@gmail.com. He discusses the challenges encountered in the course of fitting in by adults as individuals, by families, and by children. He explains the help needed by adults, families, and children to overcome the challenges they encounter in the course of fitting in. He says what more he would like to do to provide help through his work as an author, and to see done by social systems and community organizations. He shares his message for families and their children who are just starting out on their journey of fitting in.
Terri Corcoran lives in Falls Church, Virginia, and has been a full-time caregiver for her husband Vince since 2004. He is severely disabled physically and mentally by the genetic condition Fragile X-Associated Tremor Ataxia Syndrome. She is on the Board of Directors of the Well Spouse Association. She describes her life and experience of spousal caregiving, and the work and history of the Association. She highlights the most challenging of the challenges encountered by spousal caregivers, the circumstances in which these arise, the emotional consequences, and the information needs. She explains the help required by spousal caregivers in overcoming the challenges and consequences. She says what more she would like to do through her work with the Association to help spousal caregivers, and what more she would like to see done by the healthcare and social systems. She shares her message for spousal caregivers just starting out on their journey of spousal caregiving.
http://wellspouse.org/
Jennifer Laszlo Mizrahi is the President of RespectAbilityUSA.org, a non-profit organization working to reshape the attitudes of society so that people with disabilities can more fully participate in and contribute to society. She talks about her life and experience of family caregiving, and about RespectAbility USA and her work with it. She highlights the challenges encountered by people of all ages with disabilities associated with physical and mental health conditions in getting their abilities recognized so they can get jobs. She explains ways in which various of the challenges are overcome. She says what more she would like to do through her work with RespectAbilityUSA and see done by employers and government systems to help people of all ages with disabilities in getting their abilities recognized. She shares her message for family caregivers caring for family members with challenges in getting their abilities recognized and respected.
Dr. Ruwan Jayatunge graduated from the Vinnitsa National Medical University Ukraine and joined the Ministry of Health, Government of Sri Lanka. He worked closely with Sri Lankan war veterans and civilians affected by the war. He talks about his life and experience of family caregiving and his work as a physician in Sri Lanka. He explains the history of post-traumatic stress disorder, the things that can trigger it, and its effects on individuals, families and communities. He discusses the ways post-traumatic stress disorder is treated, its effects on families and their needs for help. He highlights ways in which healthcare and social systems can help individuals, families and communities affected by post-traumatic stress disorder. He says what more he would like to do and see done to help individuals with post-traumatic stress disorder and their family caregivers. He shares his message family caregivers caring for a family member with post-traumatic stress disorder.
Dr. Alessandro Acquisti is an associate professor at the Heinz College, Carnegie Mellon University (CMU) and the co-director of CMU Center for Behavioral and Decision Research, http://www.heinz.cmu.edu/~acquisti/. He talks about his career, personal life, and research relating to online privacy risks. He explains precautions he takes to protect himself against these risks, other precautions, and young people’s reactions to online privacy risks. He explains the ways in which the online privacy of young people is abused, how young people can reasonably be expected to take online privacy seriously, and the reasons why family caregivers should discuss it with their family members. He explains the things he would like to do and see done to help everyone and especially young people to take seriously the risks of harm caused by abuse of online privacy. He shares his message for families concerned that their young family members might be at risk of harm caused by abuse of online privacy.
Louise Vetter is the Chief Executive Officer of the Huntington’s Disease Society of America, http://www.hdsa.org . Bev Heim-Myers is Chief Executive Officer and Executive Director of the Huntington Society of Canada, http://www.huntingtonsociety.ca . They talk about their lives, experience with family caregiving, and their work with their organizations. They explain the challenges that arise in the American and Canadian healthcare, social and justice systems for protection of the genetic heritage of families with a history of Huntington’s disease. They discuss responses to the challenges in the US and Canada. They explain what they would like to do through their respective organizations to accelerate progress in overcoming the challenges in protecting the genetic heritage of families with a history of Huntington’s disease. They share their messages for families who are concerned about potential abuse of their genetic heritages.
Deb Mangolt is co-author of ‘Drink Wine and Giggle: 101 ways girlfriends can connect, have fun and be inspired’, www.drinkwineandgiggle.com. She discusses her own and her co-authors’ lives and experiences of family caregiving and how these are reflected in the book. She explains how she wants it to help readers. She explains friendship, true compassion, forgiveness and finding themselves, and the greatest of the challenges faced by family caregivers in achieving these goals. She discusses the help that family caregivers need and can provide for each other in overcoming the challenges in reaching their goals in health and happiness and at the same time providing true compassion for family members with serious, incurable illnesses and disabilities. She says what more she would like to do and see done to help family caregivers to sustain friendships, to obtain forgiveness, and to find themselves. She shares her message for family caregivers about their lives and their family caregiving.
Ma’n H. Zawati, is a lawyer and Academic Coordinator of the Centre of Genomics and Policy at McGill University, www.genomicsandpolicy.org. Dr. Khaled El Emam, www.ehealthinformation.ca, is the Founder and CEO of Privacy Analytics, Inc, a senior investigator at the Children's Hospital of Eastern Ontario Research Institute, and holds a Canada Research Chair in Electronic Health Information at the University of Ottawa. They describe their lives and experience with family caregiving, and their work. From legal, ethical and technological perspectives, they discuss the greatest challenges that arise in protecting the genetic heritage of families. They explain the ways currently available for overcoming the greatest of these challenges. They say what they would like to do and see done to accelerate progress in overcoming the challenges that arise in protecting the genetic heritage of families. They share their messages for families concerned about abuse of their genetic heritages.
Shirley Edwards is an ‘Identity Coach’ specializing in Family Caregivers. She’s coached and led workshops for almost 10 years through her Open Mind Coaching business, www.openmindcs.com. She talks about her background and career, her experience of family caregiving, and about the services she provides. She explains what a high quality of life is for family caregivers caring for family members with serious illnesses or disabilities, and why it matters for the family as a whole. She discusses the greatest of the challenges to quality of life experienced by family caregivers. She explains when, why and how family caregivers should think about, create and assess their quality of life plans. She says what more she would like to do through her work and see done by healthcare and social services to improve the quality of life of family caregivers. She shares her message for family caregivers concerned about the quality of their lives.
Brad Sinclair serves as Registrar for the College of Dental Hygienists of Ontario, http://www.cdho.org/. He describes his background, career and family experience with long-term care. He describes his work as the Registrar of the College. He explains self-initiation by dental hygienists and what this means for dental hygiene care in long-term care facilities. He makes the case for improving dental hygiene services for long-term care facilities and identifies the challenges that have to be overcome if dental hygiene services for long-term care facilities are to be improved. He discusses the ways in the challenges are being overcome by the College, others like it, and oral healthcare services and professions. He says what more he would like to do through the College and see done by healthcare and social services to improve dental hygiene services in long-term care. He shares his message for family caregivers with family members in long-term care.
Ginny Dennehy is co-founder, with her husband Kerry, and President of The Kelty Patrick Dennehy Foundation, www.thekeltyfoundation.org. They talk about their lives and experience with family caregiving. They explain the Foundation’s work and their work for it. They describe the greatest challenges that arise in efforts to prevent suicide in teenagers and young adults. They discuss the progress so far in dealing with the challenges and identify the gaps that remain. They highlight the next steps they see for the medical and healthcare systems, schools and higher education, and the justice system in dealing with the challenges, and for helping family caregivers with the challenges. They say what more they would like to do and see done for the next steps in dealing with the challenges that arise in preventing suicide in teenagers and young adults. Recognizing that depression can be a signal of various mental illnesses, the share their messages for parents of children who seem depressed.
Karen Arts is the Director of Business Development, High Impact Clinical Trials Program, at the www.oicr.on.ca,Ontario Institute for Cancer Research in Toronto, Canada. Linda Bennett is the Executive Director, Canadian Rheumatology Research Consortium, www.rheumtrials.com/english.htm, Canadian Rheumatology Research Consortium. They talk about their careers, experience with family caregiving and their work as it relates to clinical trials. They discuss the benefits of clinical trials and explain the challenges in delivering the benefits. They describe the processes that protect participants and say why the protections are important. They discuss the information that people need to know ahead of participating in a clinical trial and say how the information can be obtained. They talk about the things they would like to do and see done to promote the benefits and protections of clinical trials, and share a message for parents of children who are approached about participating in clinical trials in cancer research.
Leslie Ryan, MSPT, is Care Services Director for The ALS Association Rocky Mountain Chapter. The ALS Association is headquartered in Washington, DC, ALS Association. Christine Hanks opted to leave her professional work to help take care of her Mother, Natalia, who was diagnosed with ALS in November of 2009 and who lives at home. Leslie talks about her background and her work with The ALS Association. Christine talks about her family caregiving for her mother. They discuss the greatest challenges experienced by persons with ALS in its early and later stages and by their family caregivers. They explain the ways in which the challenges can be overcome through the services provided by ALS Association and other services to help persons with ALS and their family caregivers. They say what they would like to do and see done to improve help for persons with ALS and their family caregivers, and they share their messages for family caregivers caring for family members with ALS.
Audrey Friedman leads the patient and family education programs across all four hospitals of the University Health Network in Toronto, Canada. www.margaretmccartney.com . Dr. Margaret McCartney, is a family doctor in Glasgow, Scotland who writes for the British Medical Journal and for general media. They talk about their careers, work and experience with family caregiving. They explain the information challenges experienced by family caregivers and patients. They discuss ways to overcome the information challenges, which include information that is inaccurate, inconsistent and confusing. They discuss trustworthiness, understandability and usefulness as a basis for a standard for information, and the idea of family caregiving guidelines modelled on the clinical practice guidelines widely used in healthcare. They say what would like to do and see done to improve ways for meeting the information needs of family caregivers and patients, and share their messages for family caregivers.
Anna Marie Jaworski is the mother of a son with a severe congenital heart defect. She started a publishing company,www.babyheartspress.com, for the congenital heart defect community. Erin Engwall is the mother of a son, age 4, with Hypoplastic Left Heart Syndrome,www.mynameisjonas09.blogspot.ca. She’s a South Florida radio personality and a freelance writer. They tell us about themselves, their lives and their careers, and their sons and their heart defects. Drawing on their own experience and that of other family caregivers they discuss the challenges created by severe congenital heart defects for babies, growing children, and their families and family caregivers. They describe the responses to the challenges. They say what more they would like to do and see done to improve ways for helping with overcoming the challenges. The share their messages for children as they grow up with heart defects and for families and family caregivers with babies with heart defects.
Caroline Brereton is Chief Executive Officer of the www.mh.ccac-ont.ca, Mississauga Halton Community Care Access Centre. Shauna Johnston is a mental health and addictions nurse with the Centre. They talk about their careers, family caregiving experience, and work with addiction risk and mental health problems for children and adolescents. They explain the challenges and the effects that are created for students, schools, and families and family caregivers by addiction risks and mental health problems, which in some ways differ from addictions risks. They describe the ways in which the services they provide help all those involved with the challenges created by students’ addiction risk and mental health problems. They explain the things they would like to do and see done to improve ways for overcoming the challenges and reducing their effects. They share their messages for the students, schools, students, families and family caregivers the Community Care Access Centre helps.
Dr. Fred Kahn, MD, FRCS(C), is a Diplomate of the American Board of Surgery. He talks about his career in medicine, medical practice and his use of laser medicine,www.bioflexlaser.com. He explains arthritis and its various types. He highlights the most challenging of the effects experienced by people living with the various types of arthritis. He explains how arthritis is commonly treated, how effective the treatments are, and the most serious of the treatments’ side-effects. He explains how laser medicine works, how it is used to treat the various types of arthritis, and how well it avoids the side-effects of other treatments. He says who can administer laser medicine treatment. He describes what more he would like to do through his medical practice and his work to advance the use of laser medicine for people living with arthritis, and what more he would like to see done by healthcare systems. He shares his message about laser medicine for people living with arthritis.
www.anikafrancis.com, Anika Francis was first exposed to schizophrenia as a child when her mother, Sakeenah Francis, developed it. Sakeenah lived in and out of mental hospitals. For the past fifteen years, she’s been recovering after hitting rock bottom and choosing to stay on her medicine for her sake and her family’s. They talk about their experiences of growing up and living with schizophrenia. They say what resilience means to them and explain its role for them both. They describe the keys to resilience, which include connections, strong relationships, and love and hope. They discuss meaning and purpose and the power of choice, where recovery is one choice, and the importance of medications. They say what more they would like to do and see done to help families, family caregivers and family members living with serious mental illnesses to develop resilience. They share their messages for families, family caregivers and family members living with serious mental illnesses.
Diana Simpson works with the City of Mississauga’s Accessibility Advisory Committee, a committee of Council, to coordinate the www.mississauga.ca/accessibility. Rabia Khedr chairs the Accessibility Advisory Committee. She’s a Human Rights Trainer and Consultant with her own company www.diversityworx.com. They describe their work, their careers, and their experience with family caregiving. They explain the challenges created by problems of accessibility and inclusion for families, family caregivers and individuals living with special needs. They discuss the ways in which their work helps overcome challenges created by problems of accessibility and inclusion for families, family caregivers and individuals living with special needs. They say what more they would like to do through their work and by society generally to help in challenges of accessibility and inclusion. They share their messages for families, family caregivers and family members.
Scott and Julia Duncan founded the Fellowship, www.sharingtheburden.ca , which operates a 12-step program for all members of troubled families. They talk about their own lives as family caregivers for a family member troubled by addiction who died from accidental overdose of a powerful medication. They explain their work with their Fellowship. They discuss the type of people they work with and the health and family challenges these people face. They describe the ways their Fellowship helps individuals, families and family caregivers who are exhausted, physically, psychologically and spiritually. They explain the help they provide to individuals, families and family caregivers who have lost hope. They say what more they would like to do through their Fellowship to improve ways for overcoming the challenges, and what they would like to see done in society generally. They share their messages for individuals, families and family caregivers.
Dr. Adalsteinn Brown is the Director of the Institute for Health Policy, Management and Evaluation and the Dalla Lana Chair in Public Health Policy at the University of Toronto. He holds an undergraduate degree in government from Harvard University and a doctorate from the University of Oxford, where he was a Rhodes Scholar. He talks about his life and career, explains his university work with healthcare systems, and highlights his commentaries on family caregiving,www.ow.ly/oi2r4 , The Day We Stop Caring PDF. He discusses the challenges perceived by family caregivers, such as blame, marginalization and lack recognition, as identified by The Mental Healthcare Commission of Canada’s Guidelines for family caregiving. He proposes steps to address these perceptions, says what more he wants to do through his university work in public health and see done by healthcare systems, and shares his message for family caregivers who are caring for family members with serious illnesses.
Caroline Tapp-McDougall is the publisher and editor of Caregiver Solutions magazine, a Canadian publication dedicated to the wellness of seniors and their caregivers and family. She talks about her life, career and experience with family caregiving, the magazine, and about her organization, www.canadacares.org. She explains why family caregivers are sometimes called ‘caregivers’, and the difference between the two names. She describes the types and importance of the care family caregivers provide for their family members. She identifies the most challenging of the challenges that family caregivers encounter in getting themselves recognized and in providing care for their family members. She says what more she would like to do to help family caregivers through her Caregiver Solutions magazine and ‘Canada Cares’, and to see done by healthcare and social systems. She shares her message for family caregivers.
Dr. James Cave has been a family doctor for 20 years working in a rural practice in England. He’s editor in chief of the www.dtb.bmj.com. He talks about his life as a family doctor, his experience with family caregiving, and his work as Editor in Chief of the Bulletin. He summarizes the Bulletin’s editorial, ‘Doubling of deaths among sick mums-to-be amid poor evidence on drug safety in pregnancy’. He describes key trends in pregnancy and their implications for health during and after pregnancy. He discusses the importance of medications now and in the future for maintaining health during pregnancy and the challenges that arise with their use especially as learned from the history of medications during pregnancy. He says what more he wants to do via the Drug & Therapeutics Bulletin and to see done by the medical profession to advance healthcare during pregnancy, and shares his message for women about healthcare during pregnancy.
Lynne Thibodeau, mother, wife, and advocate for persons with autism, is a Board Certified Behaviour Analyst and a parent co-founder and Executive and Clinical Director of Spectrum Intervention Group. Anne Jovanovic,The Autism Underground, a family caregiver for family members living with autism is an ardent supporter of autism advocacy groups and a vocal advocate for improved autism services for children and adults. They talk about their lives as family caregivers and their work in advocacy and grassroots initiatives. They explain the challenges created by autism for children, young adults and adults generally, and for their family caregivers. They discuss approaches to overcoming the challenges created by autism, and identify the most successful approaches. They say what more they would like to do and see done to improve ways for overcoming autism’s challenges. They share their messages for family caregivers caring for family members with living autism.
Michael Ellenbogen was diagnosed with Alzheimer’s disease in 2008 at age 49. He subsequently founded the, www.michaelellenbogenmovement.com. Lori La Bey founded Alzheimer’s Speaks, a US advocacy group providing education and support for Alzheimer’s disease and dementia. He describes his experience as someone diagnosed with the disease. She shares her story as a family caregiver caring for a loved one with the disease. They describe their work. They discuss the challenges to conversation when one person in the conversation has the disease. They explain ways to overcome the challenges to conversation for the person who is living with the disease and for family members and others communicating with the person. They talk about more things they would like to do and see done to help overcome the challenges created by Alzheimer’s disease. They share their messages to family caregivers with family members with Alzheimer’s disease.
Dr. Dugald Seely, a naturopathic doctor, is director of research and clinical epidemiology at the www.ccnm.edu, Canadian College of Naturopathic Medicine and Executive Director for the www.oicc.ca, Ottawa Integrative Cancer Centre. He describes his background and his work in naturopathic medicine. He explains how naturopathic medicine differs from the medicine practiced by family doctors. He says why he and his colleagues undertook the research described in the article they published in 2013, and tells us about his research colleagues. He explains the research’s purposes, how it was conducted, and its findings. He discusses the research’s implications for persons and families living with or at risk of cardiovascular disease, and for naturopathic and family doctors. He says what more he wants to do and see done to combat cardiovascular disease, especially in light of the research findings, and shares his message persons and families living with or at risk of cardiovascular disease.
Dr. Ben Neel, Director of Research, www.theprincessmargaret.ca, Princess Margaret Cancer Centre, is an internationally recognized cancer biologist. He explains personalized cancer medicine and how it differs from other cancer treatments. He highlights his research in personalized cancer medicine and says why it is so important for him. He explains the promises of personalized cancer medicine and who among cancer patients are mostly likely to benefit. He says how far along medical science is at mid-2013 in fulfilling the promises for the cancer patients. He identifies the priorities for strengthening the promises. He explains the challenges that personalized cancer medicine creates, and how can these be overcome for cancer patients, hospitals, cancer specialists and family doctors. He says what more he wants to do and see done by the medical profession to advance personalized cancer medicine, and shares his message for persons and families living with or at risk of cancer.
www.ccurrielawyer.ca, Catherine Currie is a lawyer who defends clients with mental health issues. Joanne Capozzi is Lead Crown (prosecutor) in Ontario’s Mental Health Court and Drug Treatment Court. They discuss their work and explain bail hearings generally and how these are conducted for persons with serious mental illnesses. They describe the facts and factors that influence the criminal justice system’s decisions about bail, and what happens to the person once the decision is made. They explain the implications for family caregivers of the criminal justice system’s decisions, and the roles ascribed to family caregivers. They respond to the opinion that jails are unsuitable places for persons with serious mental illnesses regardless of the behavior that brought them into the criminal justice system, and say what changes they would like to see in the ways in which such persons are dealt with in the criminal justice system and jails.
Dr. Chris Summerville is one of the eleven non-government directors of the Mental Health Commission of Canada and CEO of the www.schizophrenia.ca, Schizophrenia Society of Canada. Dr. Ella Amir, Executive Director of AMI-Québec, led the development of Commission’s www.ow.ly/nq6qaNational Guidelines for a Comprehensive Service System to Support Family Caregivers of Adults with Mental Health Problems and Illnesses. They explain the Commission’s reasons for producing the Guidelines and its observations about the support needed by family caregivers. They discuss the implications of the National Guidelines’ observations, findings and approaches. They comment on the implementation of the National Guidelines by mental healthcare systems and service providers. They say what more they want to do and see done through their own organizations to support family caregivers caring for family members with mental illnesses, including children as well as adults.
Fred Ryall is an estate practitioner who works with families with special-needs children. He shares his personal story, explains how he came to be involved with family caregivers and their retirement, and describes his work and success in helping family caregivers. He discusses the retirement challenges of the family caregivers he supports. He highlights the health conditions of loved ones that are most worrying and challenging for family caregivers concerned about what will happen to their loved ones after they, the family caregivers, die. He discusses family caregivers’ retirement chances in the sense of opportunities to conquer their challenges and resolve their concerns. He says which opportunities he would like them to seriously consider and why. He says what more he would like to do and see done to help family caregivers to overcome their challenges and concerns and make the most of their opportunities. He shares his message for family caregivers facing retirement.
Jim Tessman is a managing partner atwww.healthwellnessdepot.com. His partner, Errol Shardelow, is a Bio Feedback therapist with an Advanced Diploma in Electronics. They share their personal stories and describe Health Wellness Depot. They explain PetPulse, their device for animals in pain. They identify obstacles to be overcome if the scientific principles that underpin PetPulse are to be made available in devices for humans, and the benefits that could be expected. They describe devices already available for humans that work on scientific principles similar to those for PetPulse, and discuss experience of use of devices with various health conditions. They say why such devices would be preferable to pain-relief medications that are often prescribed for people with persistent pain. They say what they would like to do and see done to encourage the use of non-medication treatments for persistent pain, and share their messages for family caregivers.
Peter Whitaker is the president and owner of the radio station The Haze FM. He talks about his life with blindness and describes the technology he uses for reading. He describes the radio station, and its broadcasting and its audiences. He describes his work as its president and owner. He discusses the work required to keep the station on the air and its audiences growing. He talks about work in broadcasting and career opportunities for people living with blindness. He says what he thinks of an internet broadcasting service, like his and Family Caregivers Unite, offering training in internet broadcasting for people living with blindness. He says what more things that he wants to do and what more he would like to see done by the broadcasting industry generally to increase help for people living with blindness to get good jobs in technology-related fields like broadcasting. He shares his message to children, teenagers and adults living with blindness.
Emile Therien and his wife Beth are passionate spokespersons on organ and tissue donation. He tells us about the story of their family and their daughter Sarah Beth, who died of sudden cardiac arrest in June, 2006. He discusses his family’s feelings about death and organ donation. He summarizes the benefits of organ donation for recipients, donors and greiving families, explains the needs for organ donations and donors, and describes the progress that’s being made and the challenges that remain. He discusses the questions that parents ask themselves about life support and related medical matters, about their family’s religious, ethical and social beliefs, and about their child’s wishes. He explains the answers that he and his family accepted. He says what more things he wants to do and see done to help parents grieving the death of a child and making decisions about organ donation. He shares his message to families and family caregivers grieving the death of a child.
Dr. Fred Kahn, a surgeon, is the founder of Meditech International Inc., the developer of the www.bioflexlaser.com. Julie DiNardo, founder of the www.gleamsmile.ca, Gleam Smile Centre an independent dental hygiene office, is the mother of a young woman with a painful pus-discharging skin disease. They share their personal stories and discuss painful pus-discharging skin diseases. They explain a particularly troublesome skin condition, hidradenitis suppurativa, that produces painful pus-discharging lumps under the skin, and the effects, challenges and consequences it creates for the people who develop it, for their family caregivers, and for physicians in diagnosing it. They discuss treatment and care, and their effectiveness, for the condition, and say what more they want to do and see done by healthcare and social systems for people and families confronted by such troublesome skin conditions. They share their messages for family caregivers.
Patricia Hung is a police officer with over 20 years’ experience, business owner, certified grief coach, author, and a speaker. She tells us about her personal story as the mother of a murdered child, and talks about the help she needed and what success she had in finding it. She’s the owner of www.coachingjoy.com. She says why she created it, and explains its work. She talks about parents’ grieving and grieving generally. She discusses grieving’s stages, and its challenges and complications, and its consequences if the complications and challenges prevail. She explains grief counselling, what it involves and says how in her experience it’s best provided and for how long it should be provided. She says when and why it’s helpful and at times necessary. She describes more things that she wants to do and to see done by healthcare and social systems to help people who need grief counseling. She shares her message for families and family caregivers who are grieving.
Chuck and Diane Kyd cofounded www.camphill.on.ca, Camphill Communities in Ontario. They talk about their personal stories, and the stories of Camphill in North America and in Ontario. They explain the types of people whom Camphill supports, the challenges they experience, and the support they need. They describe the challenges experienced by the people before they come to Camphill, and the help that their family caregivers need. They discuss the work Camphill does to help the people who come to them to find acceptance, acknowledgement and recognition, and to support family caregivers. They say what more they would like to do to help people to overcome their challenges and to help their families to get the help that that they most need. They say what more they want to see done by healthcare and social systems to help people overcome their challenges and to help their families to get the help that that they most need. They share their messages for messages for family caregivers.
Dr. Des Spence is a full-time family physician in Scotland; Julia Belluz, a Canadian journalist focused on healthcare policy. They discuss sexually transmitted infections of main concern in public health, the risks, and how the risks are described by public health authorities and journalists to families, families, family caregivers and family physicians,www.ow.ly/mCZ67. They explain the harmful effects on family relationships of overblown public health information about these infections. They describe how such information is gauged in journalism for newsworthiness, timeliness and trustworthiness, the questions that family physicians are asked by their patients, and the need for public health authorities to communicate with the public about public health risks. They say what they would like to do and to see done to counter fear caused by overblown public health messages and to help families, family caregivers and family members better understand risks that are important to them.
Zakir Hussain is Founder, Chairman, President and CEO of www.velomobilehealth.com, Velo Mobile Health. He talks about his personal story, his work as the CEO of VeloSolutions, and the work of Velo Mobile Health and why he created it. He describes long-distance family caregivers in multicultural communities and the most challenging of the communications challenges they experience. He describes the communications and cultural challenges for medical doctors in helping long-distance family caregivers. He describes services provided or planned by Velo Mobile Health to help long-distance caring especially in the developing world. He explains what more he wants to do to help long-distance caring by immigrant and multicultural communities for their family members living in the developing world, and to help the medical community help families involved in long-distance caring for family members living in the developing world. He shares his message for long-distance family caregivers.
Rosemary Kelly, a former teacher, is a homemaker, mother of four and grandmother of nine. Dan Kelly is a retired senior officer of the Deloitte and Touche Accounting firm. Their lives changed drastically in the late 1980s when their son John was diagnosed with schizophrenia. Failing to find the type of center they sought, they conceived of and created www.rosehillcenter.org, Rose Hill Center, a residential psychiatric rehabilitation program. They share their personal stories. They discuss the challenges faced by and the support needed by families with children or young adults with schizophrenia and the circumstances that surround it. They explain the specialized work of the Center and the ways in which it provides the support needed by those with schizophrenia and their families. They say what more they intend to do and would like to see done by others to expand the support needed by those with mental health challenges and their families, and share their messages for family caregivers.
Glynnis Walker, glynniswalker@hotmail.com, a best-selling author and a radio talk host and investigative producer, has spent much of her life looking after her husband, step-children, children, and parents. She talks about her personal story, her books, and her work as host on leading North American talk shows. She discusses the challenges of long-distance family caregiving for her mother who was living with Alzheimer’s disease and who, even though she lived in an assisted living facility, was nonetheless a victim of fraud and ended up penniless. She describes family caregivers and their family caregiving and the most challenging of the challenges they experience. She explains the consequences of family caregivers’ lives for their physical, mental and financial health. She says what more she wants to do help family caregivers avoid the consequences for their physical, psychological health, and shares her message for family caregivers. She holds a BA and MBA, and a PhD in Psychology.
Lisa Schumph is Program Manager,www.lawsonministries.org, in Hamilton, Ontario. She talks about her personal story, her work with the Ministries, and the Ministries’ work. She explains the developmental disabilities of the adults they support and the challenges that they and their families experience. She highlight the challenges to their quality of life and hope. She describes the supports provided by the Ministries to the adults, to their families, and to all of them to support their quality of life and to bring them hope. She says what more she wants to do and see done through the Ministries to help adults with developmental disabilities and to support their families. She explains what she wants to see done by healthcare and social systems to help to help adults with developmental disabilities and to support their families. She shares her message for adults who live with developmental disabilities and for their families.
Louise Kinross is special projects manager at www.hollandbloorview.ca, Holland Bloorview Kids Rehabilitation Hospital and editor of BLOOM, a magazine on parenting children with disabilities. She shares her personal story, explains her work, and talks about her life as Ben’s Mom. She discusses the challenges to parents in parenting children with special needs, in caring for their entire families, in working when they have jobs perhaps even as the family breadwinner, and in maintaining the quality of the lives of their families, of their family members, and of themselves. She explains ways in which the challenges are successfully confronted through the work of Holland Bloorview and recorded in the stories on her BlOOM blog. She says what more she wants to do and see done by healthcare systems to help parents parenting children with special needs, and she shares her message to parents parenting children with special needs.
Heather Resnick is a Revolutionary Parent who for 26 years has advocated for her daughter who lives with a mild intellectual disability. She describes her advocacy, life and work. She discusses the lives of young adults with mild intellectual disability. She explains the most challenging of the challenges experienced by parents and young adults in living independently. She highlights challenges to safety and wellbeing that they and their parents fear or that they could experience when living independently. From her research and work, she identifies successful ways to confront the challenges and the help most needed by parents and young adults. She says what more she wants to do to help parents in moving their adult children to independence, and to what more she wants to see done by healthcare, social and educational systems to help parents and their adult children in moving to independence. She shares her message to parents about moving their adult children to independence.
Dr. Mimi Guarneri, board-certified in cardiology, internal medicine, nuclear medicine and holistic medicine, specializes in Integrative Medicine, www.MimiGuarneriMD.com. She shares her personal story and talks about her pioneering work. She explains complementary medicine and how it compares with and differs from conventional medicine. She discusses the types of health conditions she regards as most likely to benefit from combining conventional and complementary medicine, and describes the ways in which family caregivers can assist in bringing the benefits to their family members of the combination of conventional and complementary medicine. She says what more she wants to do and see done to provide more help from a combination of conventional and complementary medicine for family caregivers caring for children and aging family members living at home. She shares her message to families and family caregivers who are caring for children and adults with medically incurable illnesses.
Ma’n Zawati, LLB, LLM, is a lawyer and Academic Coordinator of the www.genomicsandpolicy.org at McGill University. He shares his personal story, describes his research and work as a lawyer, and explains the Centre’s research regarding family genetic information. He discusses protections provided by privacy and security laws against theft and disclosures of our genetic information that could be harmful to us. He suggests ways in which the principles underpinning laws could be improved so our genetic information and that of our families can be better protected. He says what more he wants to do and see done by governments to improve laws to protect against abuse of our and our families’ genetic information. He says what more help is needed by individuals and their families so they can understand and speak about their fears of the risks of abuse of their genetic information. He shares his message for family caregivers.
Támara Hill, MS, is an integrative therapist,www.blogs.psychcentral.com/caregivers. She shares her story, explains her work, and highlights the frustrations family caregivers experience in obtaining timely psychotherapy and mental health services for their children and families. She describes the difficulties that confront family caregivers, especially when family members are involved with justice and mental health systems, and the obstacles they encounter in getting medical information about their family members. She explains the help needed by family caregivers and describes the help she provides for family caregivers caring for children and families experiencing obstacles to getting timely psychotherapy and mental health services. She says what more she wants to do and see done by the mental health system to help family caregivers. She shares her message to family caregivers who are caring for family members who need psychotherapy and mental health services.
Amy MacFarlane is Founder and CEO of www.recrespite.com. She shares her personal story, talks about Recreational Respite, and explains needs for tools she sees among the family caregivers. She describes the tools she thinks would help family caregivers assess needs of their family members, that would help them assess the usefulness of services for their family members, and that would them assess the usefulness of services to help family caregivers themselves. She discusses development of tools, and how family caregivers can be assured that tools are likely to be useful. She says what tools she would like to see developed first and what more she wants done to provide tools that are truly helpful for family caregivers caring for family members at home and for those for whom caring at home is not an option. She shares her message to families and family caregivers who are caring for family members with health conditions that have no medical cure.
Khaled Mansour is the founder, President and CEO of www.spyders.ca, Spyders Inc, a leading Communications, Security, and Development Services firm. He shares his personal story, describes his firm’s work, and explains abuse of information technology. He discusses the harm that abuse of information causes to people, the situations that put people most at risk of having their information abused, and types of people most vulnerable to the risk. He identifies the most important things that family caregivers should know about the risk of abuse of the information relating to their children and young adults and to their elderly relatives. He explains what family caregivers should do if they suspect abuse of the information of family members. He says what more things he wants to do and see done to help family caregivers and families protect against information abuse of their loved ones. He shares his message for family caregivers, which includes offering help to family caregivers.
Rosanna Penilla-Bharucha is the Executive Director at www.RetireAtHomeMississauga.com. She shares her personal story. She describes the work of Retire-At-Home. She explains the multicultural communities’ greatest needs. She explains the traditions which guide families in the multicultural community in caring for aging parents, and how the traditions are affected by life in Canada. She highlights difficulties in caring for elderly parents experienced by family caregivers who also are recent immigrants, and their difficulties with the healthcare systems. She explains how Retire-At-Home helps these family caregivers. She says what more she wants to do and see done to improve help for family caregivers caring for parents who are aging at home and also for those for whom aging at home is not an option. She shares her message for families and family caregivers in the multicultural community who are caring for aging parents.
Britta Martini-Miles is Executive Director of the www.grievingchildrenlighthouse.org , Lighthouse Program for Grieving Children. Candace Ray is Program Director at Lighthouse. They share their personal stories. They describe Lighthouse and its work. They discuss grieving in children, teens and their families, the various circumstances of the deaths that hinder grieving, and the effects. They explain the support that Lighthouse provides for grieving in the various circumstances. They discuss financial aspects of care provided by Lighthouse, especially when the death of a loved one brings financial challenges for the family. They explain how the death of a loved one is a time of crisis which, if handled with caring and support, can become a process of growth. They say what they intend to do and would like to see done by others to expand the support needed by grieving children, teens and their families. They share the messages for family caregivers and their family members.
Ann Stewart is chapter manager of the www.mssociety.ca/en, Multiple Sclerosis Society of Canada , Lethbridge & District Chapter. Norine Thomason has been caregiver to her husband Bill since he was diagnosed in 1969 with multiple sclerosis. They share their personal stories and explain the work of the MS Society. They highlight the most challenging of the challenges to quality of life for people living with MS, their family caregivers, and their families. They discuss the support most needed by people living with MS and their family caregivers to help them overcome the challenges to their quality of life. They share their advice about family conversations for people living with MS and their family caregivers. They say what they intend to do and would like to see done by others to so people living with MS and their family caregivers get the help they most need in overcoming the challenges created by MS. They share their messages for family caregivers and their family members.
Dr. Brian Hodges, a psychiatrist, is Professor in the Faculty of Medicine and the Faculty of Education at the University of Toronto and Vice President Education at the University Health Network, among other appointments. He leads the www.theamsphoenix.ca, The AMS Phoenix Project: A Call to Caring. He shares his personal story and explains the Phoenix Project. He discusses the medical profession’s view of caring and how this could be changed by proposals from the Phoenix Project. He describes the role of family caregivers in the new world of caring as envisioned by the Phoenix Project. He discusses the role of family caregivers caring for family members with serious mental illnesses, and the obstacles he foresees to their being admitted to the circle of care, from which they are now often excluded. He identifies the things that he wants to do and see done to help family caregivers care for their family members with serious illnesses, and shares his message for family caregivers.
Angelo Minardi is a full-time Chaplain at All Saints Catholic Secondary School. He describes his personal story, his work as school Chaplain, and his experience of family caregiving. He discusses the ways in which the Roman Catholic faith supports family caregivers, including young people who have the role of family caregiver, who are members of a congregation of a Roman Catholic Church, who are members of its local community or, through an Archdiocese, who live in a major city. He explains how the Roman Catholic faith views parents’ responsibilities to their children and children’s responsibilities to their parents. He gives examples of care supported by the Roman Catholic faith, and says whether pressures on healthcare systems are increasing the need for faith-based care facilities. He says what more he wants to do and see done to increase help for all family caregivers in their caring and in taking care of themselves. He shares his message to families and family caregivers.
Alicia Howes, www.yoursoulstory.comYour Soul Story, has explored thousands of Soul Stories. She shares her own story, says why she founded the business, and explains its work. She describes soul stories and explains how these help tell the person’s future and past. She discusses hurdles to happiness and describes the tools she’s developed to overcome these. She explains hurdles to happiness for family caregivers caring for family members with serious health challenges, and how soul stories and the tools can help them overcome their hurdles. She says how family caregivers can know how much happiness they deserve, and how soul stories and the tools can help them achieve their happiness. She explains how soul stories and the tools can help family caregivers achieve harmony in their relationships with family members they’re caring for. She says what more things she wants to do with soul stories and tools to help family caregivers, and shares her message for family caregivers.
Leona Pinsky trained and worked as a lawyer. She and her husband of 25 years have four children the youngest of whom has cystic fibrosis. She’s a passionate supporter of www.cysticfibrosis.ca, for which John Bennett is the Newfoundland & Labrador Regional Director and Provincial Advocate. He’s been a tireless volunteer since his son John was diagnosed with cystic fibrosis in July 2010 at just 2 ½ months old. They describe their lives as parents of children with cystic fibrosis. They explain Cystic Fibrosis Canada’s support for family caregivers and its work generally. They discuss the role of family caregivers with family members living with cystic fibrosis, identify the challenges they face, and the support they need. They say what they intend to do and would like to see done to help family caregivers receive the help they most need in overcoming the challenges created by cystic fibrosis, and share their messages for family caregivers and their family members.
Christine Bayer, a watercolour, mixed media and acrylic artist, www.christinebayer.com, was diagnosed with multiple sclerosis in 2001. Jerry Ford, at age 28, had his life severely affected by the onset of multiple sclerosis. With Jerry, her husband, Christine foundedwww.artdetriomphe.org. They explain its work, the various creative arts that it supports and how it supports these. They discuss the ways in which it celebrates triumph over adversity and helps people recognize and understand their innate abilities and make the fullest use of them. They talk about the future of Art de Triomphe, and the challenges that have to be overcome in building interest in its programs and services widely across the geographic communities. They say what they intend to do and would like to see done by others to help people triumph over their adversities, and they share their messages for family caregivers and their family members about triumphing over adversities.
Matthew J. Padberg, is a principal and partner in www.padbergcorrigan.com, which focuses on civil litigation, medical malpractice, aviation law, workers’ compensation, general personal injury law, and wrongful death. Dan Thompson, living with quadriplegia from a car accident, owns www.deegeerehab.com, operating across North America, which develops Life Care Plans among other services. They highlight their work related to paraplegia and quadriplegia. They explain claims, compensation, and the ways in which these pertain to the effects of paraplegia and quadriplegia. They explain lawsuits, how the challenges created by paraplegia or quadriplegia are assessed, and how compensation helps persons living with the challenges. They discuss ways in which persons and their family caregivers can be helped to get the support they need in caring for paraplegia and quadriplegia, and share their messages for family caregivers.
Dr. Nancy Sears is a registered nurse in Ontario. Her research examines patient safety in home care across Canada. Kathy Walker has a Master’s degree Social Work and is a registered social worker, with 15 years of experience. She’s family caregiver for a son with a serious mental illness. Nancy describes her research. Kathy explains her work as a family caregiver. They discuss adverse events and serious mental illnesses. Nancy summarizes the findings of her research into adverse events in home care, and its implications for family caregivers. Kathy explains how the adverse events occur in home care for family members with serious mental illnesses, and describe experiences of family caregivers. They discuss future research into adverse events in home care including those associated with serious mental and physical conditions. They highlight the ways in which family caregivers can be helped in preventing adverse events in home care, and share their messages for family caregivers.
Dave Gallson is the Associate National Executive Director of the www.mooddisorderscanada.ca. He shares his personal story, describes the Society, and explains the www.defeatdepression.ca. He talks about depression, its severity as an illness, who it affects, and how it affects them. He describes the care needed for persons it affects. He discusses the role of family caregivers in caring for young, adult and elderly family members who are affected by it. He says what more he wants to do and to see done to improve help for family caregivers with family members with depression. He describes what more he wants the healthcare and social services systems generally to do to improve help for family caregivers with family members with depression. He shares his message to families and family caregivers with family members with depression.
www.drmichaelgordon.com,Dr. Michael Gordon, is a medical professor, ethicist and one of Canada’s best known geriatricians. Susan Eng is Vice President for Advocacy at CARP, Canada’s national, non-partisan, non-profit organization, www.carp.ca/, focused on a new vision for aging. They describe their work and say what they see as the most difficult challenges created by driving in an aging population. They discuss the most important things, including warning signals, which family caregivers should know about. They explain important things that family caregivers should think about, such as driver testing for seniors, remedial driver training, and seemingly mild memory problems in elderly family members. They describe what they see as a fair and reasonable basis for seniors to be assessed from the perspectives of having to give up driving, of human rights and of insurance premiums. They share their messages for family caregivers with elderly relatives who are driving.
Michael Bryant is a Harvard-educated lawyer, former Ontario cabinet minister and university lecturer. He describes his personal story, the role of alcohol in his life, and his book, ‘28 Seconds, A True Story of Addiction, Tragedy, and Hope’, www.ow.ly/jT7Bx . Based on his own experience, he describes alcoholism when it’s fully developed, and its stages of development. He identifies warning signals that family caregivers should understand. He explains what they can do in response to the warning signals and the challenges created for family caregivers by alcoholism in a family member. He shares his cautions. He says what more he wants to do to improve help for family caregivers with family members with alcoholism. He describes what more he wants the healthcare and social services systems generally to do to improve help for family caregivers with family members with alcoholism. He shares his message to families and family caregivers with family members with drinking problems.
Diane Marshall, Executive Director of the Residences of 1425 Bayview, www.residencesofbayview.com, shares her story, describes her work, and explains the Residences’ work. She discusses the mental illnesses cared for by the Residences. She explains the Residences’ purposes and how these meet community needs. She discusses the Residences’ principles and how these meet residents’ needs. She describes the Residences’ methods that are most important for the residents’ mental, emotional and physical wellbeing. She explains the residents’ special needs, how individual residents’ special needs are assessed, and how the Residences meets them. She talks about family caregivers’ needs, how these are assessed, and how the Residences supports individual family caregivers. She says what more she would like to do and see done to further develop mental healthcare in private residence organizations, and shares her message for family caregivers caring for family members with mental illnesses.
Dr. Chris Summerville, CEO, www.schizophrenia.ca, shares his personal story and describes his work. He explains high-risk behaviors in schizophrenia and mental illnesses generally, and high-risk responses to high-risk behaviors associated with mental illnesses. He discusses the challenges that high-risk responses create for people with mental illnesses who become involved with law enforcement and healthcare systems, and for their family caregivers. He discusses overcoming the challenges created by high-risk responses for people with mental illnesses who become involved with law enforcement and healthcare systems, and for their family caregivers. He explains the Circle of Care, and the ways in which family caregivers caring for family members with mental illnesses may be excluded, says what protections would be needed if family caregivers were to be included, and considers what type of organization would be needed to include family caregivers.
Dr. Tiffany Chow is Senior Clinician-Scientist at Baycrest’s Rotman Research Institute. Jill Paterson is a Project Manager for the Historica-Dominion Institute. They explain their work with, respectively, The Memory Clinic,www.ow.ly/jsE2y, and The Memory Project. Dr. Chow explains what’s known about the ways elderly persons with Alzheimer’s disease respond to reminders of important memories and how the Memory Clinic works with them. Jill Paterson explains how memories of veterans are carefully preserved in The Memory Project. Dr. Chow says where her research is leading for care for Alzheimer’s disease. Jill Paterson identifies research questions regarding help for veterans’ family caregivers. They say what they intend to do and what more they would like to see done to enable family caregivers to help their elderly family members manage their memories in a positive way. They share their messages for family caregivers with family members who are elderly veterans.
Donna Messer is the Queen of Networking, www.ow.ly/jppRm. She discusses her personal story and her experience with family caregiving. She describes her work and projects she’s done that helped empower groups with voice and visibility. She discusses the challenges for any group that needs voice and visibility because it hasn’t got enough of an audience and needs more visibility in places where decisions are made or where they face opposition. She describes the help they need, and explains why particular types of help are so important. She explains the services she advocates and provides, and gives an example of a group that succeeded in getting its needs heard and understood. She says what more she wants to do and see done generally to help family caregivers caring for caring for family members with serious, incurable physical and mental illnesses, including those who are at the end of life. She shares her message for groups of family caregivers seeking voice and visibility.
JR Harding and Erika Richards-Harding were married on August 12, 2006. JR, www.jrharding.com is two-time survivor of spinal cord injury, 1983 and 1998. He is quadriplegic, twice over. He completed his doctorate from Florida State University in Higher Education and Public Policy. She has a journalism and dance degree, and now teaches tennis. They talk about their personal stories, lives and successes. They each say what their marriage means to them. They speak about the greatest challenges that quadriplegia created for their marriage and for each of them. They explain the ways in which they together overcame the challenges that the quadriplegia created for their strength as a family, for their intimacy, and for their future as a family. They say what they intend to do and what they want to see done to provide more help for couples who live with the challenges created by quadriplegia. They share their messages for couples who live with the challenges created by quadriplegia.
Barbara Lebo, MBA, BComm, CAAP, NIB, is CEO of Lebo Media Services, which she has owned and operated for 25 years. Married for 24 years, at age 52, she has a daughter of 13, a son of12, and a son of 7, Braeden, who lives with autism. She shares her personal story and explains the meaning the Episodes’ title, ‘I am only a Mom Caring for Autism’. She describes her role as Mom caring for Braeden. She discusses the challenges that he and she experience and explains the ways in which she responds to the challenges they both face. She discusses the most important types of help she needs, why the particular types of help so important, her experience in getting it, and the reasons that she sees for her experience. She says what more she wants to do and wants to see done generally and by the medical profession to help family caregivers caring for children living with autism, and to help their children. She shares her message to family-caregiver Moms caring for children living with autism.
Judith Snow, MA, has been labeled disabled. She’s Founding Director of Laser Eagles Art Guild, www.lasereagles.com, which makes creative activity available to artists with diverse ability. She describes her own story, her career, the successes she’s achieved, and her role as family caregiver. She explains legacies, at what stages of life are they relevant, and how are they affected by expectations. She describes her father’s legacy and how he worked to achieve it. She discusses expectations when people go into long-term care or decide to live out their lives at home. She explains how legacies can be passed on in ways that create positive expectations. She says what she means by “What you believe is what you get”. She says what more she wants to do and see done to help persons and their family caregivers create legacies when they are confronted by challenges created by disabilities, and she shares her message to families and family caregivers about legacies and expectations.
Barry Fish, www.familyfight.com, senior partner in his law firm, Fish & Associates Professional Corporation, describes his legal practice, his experience with family caregiving, and his book, ‘The Family War, Winning the Inheritance Battle’. He explains inheritance battle and the ways he advocates for winning it. He gives examples of problems that families, family caregivers and family members encounter in matters of inheritance. He explains Power of Attorney and what families, family caregivers and family members should know about it for wills and inheritance. He discusses Power of Attorney when an aging family member is affected by dementia, such as Alzheimer’s disease. He identifies things that he believes are needed to help families manage inheritance fairly and effectively when age-related health problems affect their loved ones. He says what more he’d like to see done by the medical profession to help family caregivers. He shares his message to family caregivers.
Dr. Nicole Anderson, www.research.baycrest.org/nanderson is a Senior Scientist at the Rotman Research Institute at Baycrest Health Sciences, and an Associate Professor of Psychology and Psychiatry at the University of Toronto. She explains mild cognitive impairment and how it relates to dementia and Alzheimer’s disease. She talks about the book she co-authored, Living with Mild Cognitive Impairment, www.baycrest.org/livingwithmci. She discusses the challenges that mild cognitive impairment creates for diagnosis and treatment, for the persons who experience it, and for families and family caregivers. She explains how its challenges are most successfully confronted so it can be lived with. She says what more she wants to do and see done to help confront the challenges of mild cognitive impairment. She shares her message for persons confronting the challenges of mild cognitive impairment and for family caregivers concerned about a family member with mild cognitive impairment.
Danish Ahmed,www.ordinarywords.com born a blind Pakistani albino to immigrant parents on welfare, has beaten all the odds. Judith Snow, MA, who has a background of being labeled disabled, is Founding Director of Laser Eagles Art Guild, an organization making creative activity available through personal assistance to artists with diverse ability, www.lasereagles.com.They share their personal stories, and highlight their career successes. They explain the Political Party for People with Special Needs, www.ppsn.on.ca their work with it, its political objectives, and the political advances it’s seeking. They describe the Party’s methods, messages and resources, its plans for the next election, its methods for getting publicity, and the particular population of voters it’s targeting. They explain the benefits to all of society of the advances the Party is seeking to achieve, and share their messages for the community of persons with special needs.
Jordan Bruce,www.ow.ly/i2dpx survived three heart attacks, a small stroke, and a massive stroke that paralyzed his left side and caused epilepsy. He’s back at work. Marie Cortes, his fiancée, has been by his side throughout. They talk about their lives before the attacks and strokes. They describe the first moments of the first event. They explain how their lives evolved afterwards and the challenges that followed for each of them. They discuss the ways in which they both confronted the challenges. They look back over their lives together and explain how the ways in which they both confronted the challenges contributed to healing. They reveal the stage their partnership has reached and how confronting the challenges helped them reach it. They say what more needs to be done to help partnerships confronted by serious, life-threatening events, such as strokes. They share their messages to family-caregiver partnerships confronted by serious, life-threatening events.
Mary Bart is founder and Chair of an Internet-based registered Canadian charity operating as Caregiving Matters,www.caregivingmatters.ca.Chris Kata is Director, Caregiving Matters, to which he brings his internet marketing expertise. They both describe their experiences of family caregiving. Mary says why Caregiving Matters was created. Chris says why he became involved. Mary talks about the steps in creating it. They explain why they established it as a registered internet charity. They discuss its work and the roles and importance of volunteers. Chris explains how the internet is used as a way of honoring a loved one named by a grieving family in a donation to a charity. They discuss the challenges in setting up a charity. They share their advice for others wanting to do something similar. They both say what they want to do and to see done to promote charitable activities among family caregivers. They share their messages to family caregivers interested in charitable work.
Craig Asano is the Founder and Executive Director of the National Crowdfunding Association of Canada,www.ncfacanada.org. Amy MacFarlane is Founder and CEO of Recreational Respite Inc.,www.recrespite.com. They describe their careers, say what experience they have with family caregiving, and explain the work of the organizations they founded and why they founded them. Amy describes family caregiver entrepreneurs and Craig explains crowdfunding. They discuss how crowdfunding can help family caregiver entrepreneurs overcome funding challenges. Craig suggests questions that entrepreneurial family caregivers should ask about crowdfunding, and says what cautions he has for them. Amy identifies questions that crowdfunders should ask entrepreneurial family caregivers, and says what cautions she has for them. They both say what more they want to do and see done to promote entrepreneurialism among family caregivers. They share their messages for entrepreneurial family caregivers.
Penney Cowan is founder and Chief Executive Officer of the American Chronic Pain Association,www.theacpa.org. She describes her work and her own experience of chronic pain. She explains what chronic pain is and its effects on the people who experience it. She explains the work of the Association. She discusses the challenges that chronic pain creates for the persons who experience it and that it may create for their family caregivers. She explains the ways in which the Association’s tools help persons living with chronic pain, and their family caregivers. She says what more the Association wants to do to help people and their family caregivers with the challenges of chronic pain, and what more she would like see done by the medical and pharmacy professions to help confront the challenges of chronic pain. She shares her message for persons confronting the challenges of chronic pain and for family caregivers concerned about a family member with chronic pain.
Tracy Soloninka, a recognized leader in oncology and palliative care, is a vocal advocate for benefits for families when a family member is dying. She describes her work and experience of family caregiving. She explains palliative care and end-of-life care. She discusses the challenges for family caregivers caring for family members who are dying in a hospice or at home, and says what she’s learned from family caregivers. She explains family caregivers’ information needs relating to medical conditions of their dying family members, support for family members at the end of their lives, and psychosocial and spiritual necessities of the entire family. She explains the concept of a care list for meeting the information needs of family caregivers, and identifies the types of information that a care list would aim to provide. She discusses who should prepare the list and how family caregivers would access it. She shares her message for family caregivers caring for dying family members.
Dr. Tiffany Chow is Senior Clinician-Scientist at Baycrest’s Rotman Research Institute and staff Behavioural Neurologist at Baycrest's Sam and Ida Ross Memory Clinic. She authored ‘The Memory Clinic’, www.ow.ly/hzTh1, stories of hope and healing for persons with Alzheimer’s disease and their families. She developed a popular website for children who are caregivers to middle-aged parents with dementia, www.ow.ly/hAfEa. She talks about the challenges for family caregivers caring for family members with Alzheimer’s disease, and the help and advice she provides to the family caregivers in responding to their challenges. She discusses the role of family caregivers caring for family members with Alzheimer’s disease, and how doctors view this role. She says what she wants to do and see done to help the family caregivers, and what more she would like to see done by healthcare professions and social services to help the family caregivers. She shares her message for the family caregivers.
Joel Yanofsky, http://Joelyanofsky.com, is the author of ‘Bad Animals: A Father’s Accidental Education in Autism’. He talks about his experience of family caregiving, his book, ‘Bad Animals’, and why he wrote it. He describes his struggle as a father to enter his son's world of autism. He discusses the challenges for family caregivers caring for children with autism, including the daily frustrations, and the ways he responded. He says what he learned from other parents. He describes the role of family caregivers, and the ways in which the healthcare and social systems see the role of family caregivers. He discusses the help family caregivers need in fulfilling their role, and where they find that help. He says what more he wants to do and see done to help family caregivers. He explains what more he would like to see done by the healthcare professions to help the family caregivers. He shares his message for family caregivers caring for children with autism spectrum disorders.
Jason Dunkerley, http://www.ala.ca/content/home.asp, and his guide runner Josh Karanja won bronze in the 1500 metres and silver in the 5000 metres for totally blind athletes at the 2012 London Paralympic Games. Andy Shaw, andyshaw56@gmail.com, a journalist, is Canadian Press Chief at MEDICA, the world’s largest annual medical trade fair and has been a reporter at six Olympic Games. Jason talks about the Special Olympics and the Paralympics. Andy says how a radio journalist would report on the Special Olympics and the Paralympics. They discuss messages that the Active Living Alliance, which Jason works for, wants to send to family caregivers about the value of active living for family members with special needs and how radio broadcasting can help get the message out and influence attitudes. They say what they want to do and see done to promote active living for children, young persons and adults with special needs, and share their messages for parents of children with special needs.
Anika Francis was first exposed to schizophrenia at the age of three when her mother, Sakeenah Francis, was diagnosed with it. Sakeenah lived in and out of mental hospitals. For the past fifteen years, she’s been recovering after hitting rock bottom and choosing to stay on her medicine for her sake and her family’s. They both discuss their careers and work. Anika talks about her book, “Love's All That Makes Sense”, http://bridgeross.com/francis.html. Sakeenah explains the speeches she makes for the National Alliance on Mental Illness, http://www.nami.org/. They describe their experiences with schizophrenia and discuss the 25 years of challenges they both experienced and the ways they overcame them. They talk about ways to increase help for children growing up with mothers with schizophrenia and for their mothers. They share their messages for children of parents with schizophrenia and for family caregivers for loved ones with schizophrenia and for mothers recovering from schizophrenia.
Dr. Diana Denholm is a board-certified psychotherapist who, for over 11 years, was the primary caregiver to her husband during a series of grave illnesses. She describes her professional background, her experience of family caregiving, and her book, ‘The Caregiving Wife’s Handbook, Caring for Your Seriously Ill Husband, Caring for Yourself’, www.caregivingwife.com. She explains what ‘being on the edge’ means. She discusses challenges for family caregivers caring for partners diagnosed with a serious, long-term illness requiring many years of caregiving. She explains challenges such as getting mentoring, information, and support for quality of life undermined by burnout, stress, and guilt. She discusses challenges for wives’ relationships with their partners that arise with matters of intimacy, uncertainty about difficult things that should be discussed, and deeply felt concerns. She talks about hope and help for family caregiving wives, and what more is to be done to help them.
Bill Adair is Chief Executive Officer of the Spinal Cord Injury Ontario, http://www.sciontario.org/. Susan Manwaring is the National Chair of Miller Thomson’s Charities and Not-for-Profit Group, www.millerthomson.com/charities-nfp. They discuss the definition of charity and the accountabilities and responsibilities expected of one. Bill describes the obligations that his charity applies to itself. Susan discusses the legal principles governing charities. They identify the things that family caregivers should consider when, for example, contributions to a charity will be requested as a way of honoring the life of a deceased family member. They explain the types of questions that families should ask of a charity. They discuss what family caregivers and donors can do if the information they receive in response to their questions seems insufficient. They say what more can be done to help family caregivers considering a charitable donation, and share their messages for family caregivers.
Kathy Walker, a registered social worker, was a mental health case manager for 15 years. She’s a single parent and mother of a son with schizoaffective disorder. Dr. Lisa Doupe’s medical practice includes forensic psychotherapy. She specializes in care for family caregivers and their family members whose high-risk behaviors involved them with the justice system. They discuss situations in which family caregivers caring for family members with serious mental illnesses experience challenges in getting their questions answered by physicians and in providing information to them. To overcome the challenges, they propose a procedure for good consultations in mental healthcare. They discuss ways in which physicians, their patients and family caregivers could be encouraged to use it. They say what more they would like to do and see done to increase help for family caregivers in getting their voices heard as individuals and as a community, and they share their messages for family caregivers.
Steven Holmes is a son, husband, father and grandfather. He describes his career and his role as a member of a family involved in family caregiving. He explains his mother’s role in the family caregiving, and the ways in which his mother cared for his father and for the particular challenges his father faced. He discusses the effects of time and aging on his mother and her caregiving. He explains the support his mother most strongly relied on throughout, and its influence on the family. He describes the family’s concerns that arose for their mother with the passing of time and with aging. He explains the help the family sought from the healthcare and social-services systems. He describes their experience with the help, and says whether he believes that other families have similar experiences. He says what more he would like to see done to help family caregivers of family members as they age at home, and shares his message for family caregivers caring for family members aging at home.
Dr. Anna Reid, President, 2012–2013, of the Canadian Medical Association http://www.cma.ca/, explains the path that led her to acclamation as President and her role in the position. She highlights medical conditions for which family physicians and family caregivers need to closely communicate. She says how family physicians as a profession view family caregiving and explains concerns they may have in working closely with family caregivers. She summarizes the Association’s positions, policies and priorities for family physicians and family caregiving. She discusses family caregivers in the role of assistants to family physicians providing medical care for their family members. She says what she would like to do and see done to help family caregivers and family physicians work more closely together caring for family members with medically incurable mental or physical illnesses. She shares her message for family caregivers caring for family members with medically incurable illnesses.
David Ashdown has been involved since 1990 in Community Concerns for the Medically Fragile, http://www.ccmfonline.com/. He describes his involvement and his own experience with family caregiving. He identifies the most common medical conditions that cause individuals to be medically fragile and the stages of life at which they are affected. He talks about the challenges faced by medically fragile individuals, by their families and family caregivers, and by healthcare and social systems that provide help. He says how CCMF helps with the challenges, and uses activity centers, outdoor activities, art and music therapies, and other services to enable a meaningful life for the individuals it cares for. He describes the challenges CCMF faces in generating funding. He says what more he would like to do and see done to help medically fragile individuals and their families and family caregivers, and shares his message for family caregivers caring for family members who are medically fragile.
Johanna Trimble, http://www.isyourmomondrugs.com, is a passionate patient advocate and a World Health Organization Patient Safety Champion. Donna Davis is Co-chair of Patients for Patient Safety Canada, http://www.patientsforpatientsafety.ca/, and a mother, wife, and nurse. They describe their backgrounds, experience as family caregivers and work. They discuss challenges created by medications prescribed for elderly persons living in residential care facilities, and identify the most serious for elderly people, professional caregivers and family caregivers. They explain other challenges that arise for family caregivers, and discuss the roles of family caregivers in meeting the challenges created by medications prescribed for their elderly family members, including questions to ask doctors and nurses, and what to do if the information seems insufficient. They say what they want to do and see done to increase help for family caregivers, and share their messages for family caregivers.
Dr. Will Johnston has practiced family medicine for over 30 years. He’s Chair of the Euthanasia Prevention Coalition of BC, www.epcbc.ca, . He describes his career and experience with family caregiving, and what led him to euthanasia prevention. He discusses the Coalition’s work and his work as Chair. He explains euthanasia and why what it implies needs to be discussed. He says what he sees as the most influential attitudes in society. He explains ‘state-sponsored suicide’, and why family caregivers should be aware of its implications. He advises family caregivers how to interpret physicians’ predictions for particular end-of-life conditions. He discusses decisions to let nature take its course in end-of-life circumstances. He says what more he would like to do and see done to help family caregivers caring for family members in end-of-life circumstances, and shares his message for family caregivers and mental healthcare and social-services professionals about end-of-life circumstances.
Mary Schulz is Director, Information, Support Services and Education at the Alzheimer Society of Canada, www.alzheimer.ca. She talks about her career, own experience with family caregiving and what led to her interest in family caregivers caring for family members with Alzheimer’s disease. She explains her help for family caregivers caring for family members with Alzheimer’s disease. She describes the Society’s programs for combating stigma in Alzheimer’s disease. She identifies stigma-related challenges their consequences, including those arising in the healthcare and social-services systems, which affect persons with Alzheimer’s disease and their family caregivers. She explains methods of combating stigma and the challenges it creates for persons with Alzheimer’s disease, their family caregivers. She says what more remains to be done to combat stigma related to Alzheimer’s disease and shares her messages for mental healthcare and social-services professionals and family caregivers.
Frank Viti and Jill Farber are, respectively, President and CEO, and Vice-Chair, Board of Directors of Autism Speaks Canada, www.autismspeaks.ca. They describe their personal backgrounds and their experience with family caregiving. They explain the work of Autism Speaks Canada and the services it provides for children and adults living with autism and for their family caregivers. They explain the challenges created by autism for children and adults and for family caregivers. They discuss the effectiveness of mental healthcare services in helping them all meet the challenges. They describe Autism Speaks Canada`s priorities for helping them all meet the challenges. They talk about ways to increase help in meeting the challenges, and they both share their messages for family caregivers caring for family members living with autism’s challenges.
Dave Gallson is the Associate National Executive Director of the Mood Disorders Society of Canada, www.mooddisorderscanada.ca. He explains his involvement with mental health. He describes the Society’s mission and its programs, the people these serve, and the benefits. He gives examples of mood disorders and the challenges for persons with them and for their family caregivers. He says how stigma is experienced by persons living with mood disorders, and how it affects them, their families and their family caregivers. He discusses stigma in the workplace, in the wider community, and in the healthcare system, and how it can be combated. He discusses education about mental illness for children in school as a way to combat stigma. He says what more he would like to do and see done to help combat stigma of persons with mood disorders and shares his messages for healthcare professionals and for family caregivers caring for a family member living with a mood disorder.
Dr. Sholom Glouberman is President of the Patients’ Association of Canada, http://patientsassociation.ca/. He describes his experience with family caregiving. He explains the Association’s mission and the needs it’s responding to, and its services and their benefits. He identifies the challenges created by medically incurable illnesses for patients and their family caregivers. He discusses the benefits of bringing patients and their family caregivers together in one organization led by the Association. He talks about the possible challenges from healthcare systems, professions and institutions, and from governments and their healthcare-related organizations. He describes the major strategies he advocates. He explains what he would like to do to help family caregivers caring for family members with medically incurable illnesses by joining them in one organization, and he shares his messages for healthcare professionals and family caregivers.
Susan Eng is Vice President for Advocacy at CARP, the national, non-partisan, non-profit organization committed to advocating for social change, http://www.carp.ca/. Jeff Curtis is the Chief Privacy Officer for Sunnybrook Health Sciences Centre, a 10,000+ employee acute-care, research and teaching hospital in Toronto, www.sunnybrook.ca. They discuss the question of who, if any one, in healthcare and hospitals now owns individuals’ electronic medical records, and what ownership actually means in various healthcare situations. They highlight privacy, its meaning, and its challenges in the world of electronic medical records. They talk about the benefits that electronic medical records bring or should bring to persons with serious, medically incurable illnesses who are living at home or in the care of hospitals, and to their family caregivers. They discuss ways to help family caregivers and their family members in meeting the challenges brought to them by electronic medical records.
Tony Buzan, an internationally renowned expert on the thinking process, is the world’s foremost expert in Mental Literacy, http://www.thinkbuzan.com/intl. He describes his career, his own experience with family caregiving, and what led to his interest in training memory. He explains his work in developing, applying and promoting memory training and describes the memory training services he and his team provide, the people to whom these services are provided and how the services benefit them. He discusses memory challenges that affect children, young adults, and all adults as they age normally. He explains the principles for memory training to improve memory at various ages, and help for family caregivers caring for family members affected by incurable health conditions. He says what more he would like to do and see done to improve memory of children and adults, and he shares his messages for mental healthcare professionals and family caregivers.
Sara Winter is mom of two boys, one with ADHD, anxiety and celiac disease with a twelve year-old nephew on the autism spectrum. She created http://www.squag.com/, to encourage mindfulness, self-reflection and original thinking for kids with autism. Jonathan Schwartz, prior President and CEO at Sun Microsystems, is co-founder and Chief Executive Officer of CareZone, https://carezone.com/, developed for people like him who must simultaneously care for children and parents but find social networking sites insufficiently targeted toward the act of caregiving. They talk about their web services, discuss the benefits and challenges that computers connected to the internet bring to children and to family caregivers. They describe the help needed by children and family caregivers to make more use of computers connected to the internet, and say what more they want to do and to see done to increase the help for children and family caregivers. They share their messages for family caregivers.
Dr. Pamella Thomas is Chief Medical Officer and Executive Director of the Institute for Health and Productivity Management’s WorkPlace Center for the Working Caregiver, http://is.gd/d5go2D. She describes the WorkPlace Center, the services it provides, the people it serves, and how they benefit. She discusses the challenges faced by family caregivers caring for working family members, what makes the challenges difficult, and the ways in which she helps family caregivers in meeting these challenges. She explains the consequences of the challenges if family caregivers do and don’t receive and act on the help they need. She says how she would like to see more help provided for family caregivers caring for working family members. She shares her messages for family doctors and other healthcare professionals about the role of family caregivers caring for working family members, and her message for family caregivers caring for working family members.
Dr. Chris Summerville is CEO of the Schizophrenia Society of Canada, http://www.schizophrenia.ca/, and a director of the Mental Health Commission of Canada. Dr. Mark Ragins is the Medical Director at the MHA Village Integrated Service Agency in Long Beach, California, http://www.mhala.org/mha-village.htm, an award-winning recovery-based mental health service. They explain their work in helping people combat stigma and its effects. They highlight challenges stigma creates for persons with mental illnesses such as schizophrenia and for their family caregivers. They explain the types of help needed by persons and their families to successfully respond to their challenges, and the consequences if persons with mental illnesses such as schizophrenia do not get or act on the help. They say what they would like to see done to increase efforts to combat the challenges and negative consequences created by stigma for persons with mental illnesses, and share their messages for family caregivers.
Jan Spilman, MEd, is a Registered Clinical Counsellor, Compassion Fatigue Specialist, and Mental Health Educator, www.caregiverwellness.ca. She discusses her professional career, her experience with family caregiving, what led her to become a Compassion Fatigue and Chronic Sorrow Specialist, and what her work involves. She describes compassion fatigue and chronic sorrow, and the challenges that compassion fatigue creates for family caregivers. She discusses the consequences for family caregivers if they don’t get effective help with their challenges. She explains the help needed by family caregivers with compassion fatigue. She describes her Caregiver Wellness Workshops, and describes the ways in which these help. She says how she would like to see family caregivers helped more. She shares her message for healthcare and social-services systems and her message of hope for family caregivers confronted by the challenges of compassion fatigue and chronic sorrow.
Lee Helmer directs a peer-led organization, T.E.A.C.H., (Teach, Empower, Advocate for Community Health), in Halton Region, Ontario, Canada. He describes his own experience with family caregiving and his own mental and brain health challenges. He outlines the mental health conditions that T.E.A.C.H. helps with, explains the help needed and provided for these conditions, and describes the groups that are helped. He explains the challenges created by the conditions for persons and their family caregivers, and the consequences for them all if their challenges are not effectively helped. He explains the purposes of the help that T.E.A.C.H. provides, and gives examples. He says what more help he would like to see provided by the healthcare and social-services systems to persons and their family caregivers confronted by their challenges. He shares his message for healthcare and social-service professionals and his message of hope for family caregivers and their family members.
Steve Kalaydjian channels his energy to mental health after 15 years of working in information technology. He describes his own experience with family caregiving for problems of mental and physical health and of addiction challenges. He explains his voluntary work in peer support for mental health and addiction challenges. He describes the challenges and their consequences which he and his family experienced. He discusses his family’s experience of getting help. He says what he’s learned about help most needed by family caregivers and their families experiencing problems of mental health and of addiction, and about the ways it’s provided. He says what more help he’d like to see provided by the healthcare and social-services systems to family caregivers and their families experiencing the challenges of mental health and addiction problems. He shares his message for healthcare and social-service professionals and his message of hope for family caregivers and their family members.
Dr. Marshall Korenblum is Psychiatrist-in-Chief of The Hincks-Dellcrest Centre, http://www.hincksdellcrest.org/ABC/Welcome, a children’s mental health treatment, research, and teaching center in Toronto, Canada. He explains how his work at the Centre involves him with family caregivers. He describes the difficulties faced by children and their family caregivers, the most difficult challenges they face, and the outcomes typical of their mental health conditions. He highlights the care children need and says what determines whether a child should be cared for at home or in a residential facility. He explains the ways in which family caregivers can be helped by psychiatrists when children are living at home or in a residential facility, and why helping them is important. He says what more he would like done to help family caregivers caring for children with mental health challenges, and shares his messages for the healthcare system, healthcare’s professionals, and family caregivers.
Eleanor Silverberg is a Counseling and Grief Specialist for Care Providers, www.eleanorsilverberg.com. Tibor Maknyik is family caregiver for his wife with Alzheimer's disease, which began in 1997 when she was 53. They discuss the losses that family caregivers experience in caring for a spouse with the disease. She explains the losses family caregivers experience. He describes the most difficult losses he experienced. She describes her specialized professional approach to helping family caregivers with their losses. He explains the factors in his life that led him to turn to Eleanor for help, and at what point in his family caregiving he approached her. She summarizes the benefits that she wants her approach to bring to family caregivers. He says how her services helped him in coping with his losses. They say what they want to see done to increase help for family caregivers caring for spouses with dementia like Alzheimer’s disease. They share their messages for family caregivers.
Dr. Ian Blumer is a diabetes specialist, www.ourdiabetes.com. Kim Banting is a Registered Nutritional Consultant, http://is.gd/nAw32K. They describe their personal backgrounds, experience of family caregiving, and work in diabetes. They discuss diabetes trends, how unhealthy diet and lifestyle harmfully interact with diabetes. They explain what family caregivers should know when a family member has diabetes or is at risk of it. He says why a healthy lifestyle should include the ways in which persons with diabetes and their family caregivers interact with physicians and the healthcare system. She identifies the key things that family caregivers should know about good nutrition for children and vulnerable adults with diabetes. They both say what more they want to see done to advance attention to diet and lifestyle for children, adults and vulnerable seniors with diabetes or at risk of developing it. They share their messages to family caregivers with a family member with diabetes.
Jennifer Harrison is Professional Practice Advisor for the College of Respiratory Therapists of Ontario, www.crto.on.ca. Lisa Taylor is Associate Registrar for the College of Dental Hygienists of Ontario, www.cdho.org. They describe their personal backgrounds, professional careers, and experience with family caregiving. They explain the work of respiratory therapists and dental hygienists. Jennifer discusses health conditions for which respiratory therapy is commonly used at home. Lisa explains why mouth health is important for machine-assisted breathing at home. They discuss the challenges to respiratory therapy and mouth health during machine assisted breathing at home. They highlight prevention of things going wrong, and explain the role of family caregivers in prevention. They say what they want to see done to advance mouth health and respiratory therapy for persons receiving at machine-assisted breathing at home. They share their messages for family caregivers.
Dr. Teena Cahill, www.teenacahill.com, is author of “The Cahill Factor: Turning Adversity into Advantage”, a powerful personal story about wisdom, resilience, and caregiving. She talks about her professional career, her own experience with family caregiving, and identifies her publications that focus on ways for family caregivers to move from caregiver to care partner. She discusses the challenges for family caregivers and says what she’s learned from other family caregivers, and explains why moving from caregiver to care partner is so beneficial. She describes the ways in which family caregivers can move from caregiver to care partner. She says how moving from caregiver to care partner benefits the ways the family caregiver and the family member interact with support from outside the family, such as healthcare and social services. She shares her messages for the healthcare system, for healthcare and social-service professionals, and for family caregivers and their family members.
Krista James is the National Director of the Canadian Centre for Elder Law, www.bcli.org. She describes her personal background, professional career, and her experience of family caregiving. She explains the Centre’s work. She discusses ‘Elder Law’ and how is it is used to protect seniors. She talks about the ways in which identity theft occurs and how it harms seniors and their families. She identifies the commonest ways in which a senior’s identity is stolen and the commonest types of harm that results to the senior and the senior’s family. She talks about ways for preventing theft of identities of seniors and what to do if a senior’s identity seems to have been stolen. She discusses increasing protections for seniors and improving help for family caregivers caring for family members vulnerable to identity theft. She shares her messages to governments and others concerned with elder law about improving protection of seniors against identity theft, and to family caregivers.
Dr. Allissa Gaul is a Naturopathic Doctor, www.resonance-wellness.com. She describes her professional career, and the profession of naturopathic doctors and how this is evolving. She explains her role as President of the College of Naturopathic Doctors of Alberta, and the College’s work. She talks about the health concerns of children that are most common in her practice, the types of care she provides for them and for children with special needs, and how she works with their family caregivers. She discusses naturopathic care for adults with long-term or terminal illnesses, identifies the commonest of these, and explains her approach to their care. She describes how she works with family caregivers with family members who have terminal illnesses and who are receiving palliative care. About the services of naturopathic doctors, she shares her messages for the healthcare system, other healthcare professionals and family caregivers.
Staff Sergeant Jamie Dunlop, a 16-yr member of the Ottawa Police Service, is in charge of a platoon of emergency response officers, http://ottawapolice.ca/en/Community/Autism/AutismRegistry.aspx. Dennis Debbaudt, http://www.autismriskmanagement.com, is a professional investigator and journalist who turned his investigations to autism when his son, Brad, now a young man, was diagnosed with it. They explain risks for individuals with autism and challenges created for their family caregivers. They discuss their work in autism risk, safety management and law enforcement with individuals whose autism brings them to the attention of the police. They explain methods for preventing or minimizing risks that autism creates for individuals and for helping family caregivers manage the challenges. They talk about ways to increase support for families, family caregivers and family members living with autism, and share their messages for family caregivers with family members living with autism.
For twenty years, Jan Wong had been one of the Canada’s best-known reporters. Then one day she turned in a story that set off a firestorm of controversy, including death threats, a unanimous denunciation by Parliament and a rebuke by her own newspaper. For the first time in her professional life, she fell into a severe clinical depression. Yet she resisted the diagnosis, refusing to believe she had a mental illness. As it turned out, so did her company and insurer. With humor, grace and insight her book, Out of the Blue, http://www.janwong.ca/outoftheblue.html, tells the harrowing story of her struggle with workplace-caused depression, and of the eventual emergence the book. Hear her discussing her experience with depression and the factors to which she attributes it; her views on work-related stress and what can be done about it; her thoughts on help for people with depression; and her messages for healthcare systems, employers and family caregivers.
Shirley Hickman in 2002 co-founded Threads of Life, A Workplace Tragedy Family Support Association, http://threadsoflife.ca/. She’s Executive Director and Family Program Manager. Fran DeFilippis, in 2001, after the birth of her second child, started a part-time chocolate truffle business. Shirley and Fran both experienced workplace tragedy. They describe their lives and work with Threads of Life. They discuss workplace tragedy’s consequences, and the needs for support and the challenges encountered by families and family caregivers in accessing support from insurance, worker compensation, employers, healthcare and other systems. They explain the support that Threads of Life provides for families and family caregivers after workplace tragedy, and the support that Threads of Life itself relies on. They talk about ways to increase support for families and family caregivers after workplace tragedy, and share their messages for families and family caregivers.
Sharon Brigner is a Deputy Vice President for the Pharmaceutical Research and Manufacturers of America, www.phrma.org, a trade association in Washington, DC. Joseph Hammang is Senior Vice President, Life Sciences for ML Strategies, www.mlstrategies.com. They talk about the organization of clinical trials, the people who are the subjects and how they are recruited. They discuss permissions and suggest questions that family caregivers should ask about purposes and procedures of clinical trials involving family members, effects they should expect and watch out for, information that is collected about family members participating in a clinical trial, and the action to take if something appears to be going wrong. They talk about ways for increasing the benefits of clinical trials and the protections required to maintain the confidence of family caregivers and their family members, and everyone, and share their messages for family caregivers.
Megan O’Toole, a veteran Canadian journalist, wrote the story of a psychiatric hospital cemetery. She describes the people interested in the hospital’s patients buried in the cemetery, and some of their stories. She explains the future for the cemetery and how it will be cared for. She describes what she learned from the story. From a media perspective, she talks about the importance of the history of the cemetery and of the hospital’s care for people with mental illnesses and developmental disorders. She identifies topics the media should pay more attention to, and why. She says how more media interest in the history of care for mental illnesses and developmental disorders could help improve their care today. She explains why memories evoked by the psychiatric hospital cemetery are important, and what family caregivers can learn from them when they are caring for family members with the types of mental illnesses and developmental disorders of the people buried in the cemetery.
Lori La Bey is the founder of the First Collaborative International Resource Directory for Dementia, in Minneapolis. She describes her professional career and experience of family caregiving. She discusses family caregivers’ needs in caring for family members living with dementia such as Alzheimer’s disease, and explains what motivated her to create the Directory. She describes the services it provides, who it is intended to serve and where, and which of her other services it works with. She talks about the people who are involved in creating it, how it operates and whether she is looking for volunteers to get involved or for additional resources of any kind. She describes its users, and their needs and responses. She says why it is so important, who in the wider community should know about it, and why should they know about it. She explains how she wants it to work with healthcare and other professionals. She shares her message to family caregivers. www.AlzheimersSpeaks.com
Dawn Fields is an independent film producer and the president of Palm Street Films, a feature film production company based in Los Angeles. She talks about her career and as a film producer and shares her thoughts about family caregiving. She explains why she got involved in producing the film ‘Shattered Love’. She talks about the film’s story, the pain and devastation caused by Alzheimer’s disease. She says why it engaged her, and describes the reactions of her colleagues involved in the film. She describes the audience she’s thinking of for the film and its message for particular communities and people. She says who she would particularly like to see it, and why. She shares the message of the film for family caregivers and for people who are starting to be worried about developing Alzheimer’s disease. She explains why the film ‘Shattered Love’ matters, where people can watch it, and the help she needs in producing it.
Micheal Vonn is a lawyer and the Policy Director of the British Columbia Civil Liberties Association. She describes her work in civil liberties, says what ‘death with dignity’ means to her and why she become involved with it as a legal and social matter. She explains the case the Association filed to change law on medically-assisted dying. She discusses the outcome and its significance for patients and family caregivers. She says what ‘death with dignity’ means and doesn’t mean, explains why the association focused on medically-assisted dying, and what the people who participated in the case wanted the Court to understand. She explains when medically-assisted dying should be considered, by whom it should be considered, and the chief objections to it. She says what she would like to see done to advance dignity in death. She shares her message for family caregivers with family members whose health conditions are causing them anguish as they face dying of serious and incurable illness.
Stuart Hickox is Founder and President of One Change, a charitable foundation with an empowering message, Simple Actions Matter. Julie DiNardo, a dental hygienist with an independent dental hygiene office, is founder of the charity Woolies for New B's and, with her family, has been foster parent to many children. Stuart explains how One Change mobilizes volunteers and community groups. Julie explains her charity and how it works with family caregivers. They discuss the financial challenges faced by family caregivers, and the ways in which family caregivers as a community could use voice to get more financial support for family caregivers. They discuss the ways in which family caregivers can get their voices heard by healthcare’s decision makers. They explore the future of voice for family caregivers at a time when healthcare systems are short of money and therefore encouraging family caregivers to care for their loved ones at home, and share their messages for family caregivers.
Jonathan Schwartz was President and CEO at Sun Microsystems. He co-developed CareZone for people like him who must simultaneously care for children and parents. He explains how CareZone helps family caregivers manage information about family members’ health and progress, and ensure that medications are taken as prescribed, that all treatments are followed, and that side effects are reported to the physician. How it helps family caregivers manage medical appointments and home visits. How it protects family members’ information. How it helps family members who don’t want their information shared too widely. He discusses the future of CareZone and information technology in being more helpful to family caregivers, and in helping protect the health, wellbeing and finances of family caregivers. He identifies the help healthcare systems should give to family caregivers to enable them to use information technology as it develops. He shares his message about CareZone for family caregivers.
Joe Henry, Manager of Student Access at Humber College, describes his work in disability services in post-secondary education. He explains the challenges students with special needs encounter in college education and the ways in which health conditions complicate the special needs. He describes how his services help the students. He discusses support needed by the students as their college education comes to an end and they look for work. He talks about stigmatization of certain types of health conditions as a challenge for young people with special needs seeking work. He discusses the transition between education and work, the support students need from their families, the adjustments family caregivers need to make, and how he works with them and their family members. He says what more he thinks should be done to help young people with special needs to find work that enables them to make the very best of their abilities and shares his messages for students and family caregivers.
Steven Holmes is the Chief Bouncing Officer of Springfree Trampoline. Rosemarie Senisi is Mom of 4 children, 3 living with neurological conditions. They discuss their backgrounds and experience with family caregiving and Springfree Trampolines. They talk about Springfree Trampolines, who uses them, and how and why. They explain the special needs for which Springfree Trampolines are recommended, why safety is such an important consideration, the benefits created for children with special needs, the responsibilities arising for family caregivers whose children use them, and how family caregivers are encouraged to use them. They explain the arrangements for access to Springfree Trampolines, and the special precautions and help to ensure that children with special needs get the full benefits. They say what more they would like to see done to promote physical activity for children with special needs. They share their messages to family caregivers caring for children with special needs.
Dr. Geoffrey Reaume is Associate Professor in the Critical Disability Studies graduate program at York University where he’s taught since 2004. His work as historian, author, video producer and playwright are all informed by his experiences as a psychiatric patient as a teenager and young adult. He explains the medical diagnosis he was given as a young person and how it affected his life. He discusses the history of treatment of people whose medical diagnoses led to confinement in asylums. He says what he learned from his examination of the Toronto Hospital’s medical files, 1870 to 1940. He says what we can learn from the history of caring for mental illness about family caregiving, the medical and social professions, and society. He identifies things that should be done better by the medical profession, governments and health care planners in supporting and caring for persons with mental illness, and shares his messages for persons and their family caregivers.
Peter Rosenthal is a lawyer widely experienced in matters of social justice who is also Professor of Mathematics at the University of Toronto. Suzan Fraser is a lawyer specializing in constitutional and administrative law with over 15 years’ experience in public interest, social justice, children’s rights and mental health issues. They discuss the legal matters they deal with that relate to persons with mental illnesses which lead to risky effects, such as behaviors over which the person has little or no control. They talk about legal cases in which risky effects of mental illnesses have found their way into the justice system, and what the outcome was. They discuss the types of legal actions and their strengths and weaknesses relative to responses to types of risky effects of the illness. They highlight the changes they think are needed in the justice system and their messages for family caregivers caring for family members whose mental illnesses have involved the justice system.
Jacqueline Marcell wrote 'Elder Rage', her best-selling book, out of her experience caring for her parents with Alzheimer's disease undiagnosed for over a year. She talks about her professional career and her life as a family caregiver involved with family members with Alzheimer’s disease. She explains what Elder Rage is and what makes it such a challenge for family caregivers. She discusses the range of challenges that arise for family caregivers caring for a family member with Alzheimer’s disease, such as the first things that family caregivers notice, high-risk behaviors, and the particular challenges when the family member lives in a care facility. She explains how family caregivers caring for a family member with Alzheimer’s disease should get the best of help from health professionals and services available to them. She says what more needs to be done to help, respect and support family caregivers caring for Alzheimer’s disease, and shares her message for family caregivers.
Naguib Gouda is Chief Executive Officer of the Alzheimer Society of Canada. Mary Schulz is the Society’s Director of Information, Support Services and Education. They explain the priorities for the Society. They highlight the challenges that Alzheimer’s disease creates for family caregivers, families and family members. They explain the particular challenges of stigma, of family members’ interpreting and acting promptly on the early warning signs of Alzheimer’s disease, of the high-risk behaviors it generates, of the strain on family caregivers’ own mental, physical and financial health, of getting trustworthy and timely information, and of navigating the healthcare and social systems. They describe the Society’s services to help family caregivers with these and other challenges. They identify the responses they’d like to see from government, healthcare and social systems. They say that these systems can learn from family caregivers. They share their messages for family caregivers.
Jim Wilson, President and founder of the Canadian Lyme Disease Foundation, is himself a victim of Lyme disease and the father of victims of Lyme disease. Janet Sperling is a trained entomologist whose 15 year-old son fell desperately ill. After months without a clear diagnosis, she and her husband confronted the possibility of Lyme disease. Jim and Janet discuss the serious challenges that Lyme disease creates for children, adults, family caregivers and families. They describe most important things that family caregivers, families, and family members should know about the disease, and where they can they find information about services and solutions for the challenges. They discuss communications with doctors which, they stress, should involve family caregivers giving information to doctors as well as family caregivers taking the advice of doctors. They identify the responses they want to see from healthcare systems and governments and they share their messages for family caregivers.
Kathy Kelly is Executive Director of Family Caregiver Alliance, a national US nonprofit organization providing direct family caregiver support services, public policy development, research and public awareness. Marilyn Pytka found herself in financial, physical, professional and personal ruin after spending over 20 years as her mother’s family caregiver. They highlight their backgrounds and experiences of family caregiving. Kathy explains the Family Caregiver Alliance and its work. Marilyn analyzes how well family caregiving is understood and how much family caregivers are respected. They discuss the challenges of family caregiving that may lead to injustices in things such as finances, health, and services, and within the family. They explain the most important solutions that are needed to prevent the challenges from creating these injustices. They say what more they would like to see done to promote justice for family caregivers. They give their messages to family caregivers.
Alan Majer is the founder of GoodRobot.com. John Wunderlich is an independent information and privacy consultant in Toronto. Alan explains how home automation benefits family caregivers caring for family members with health challenges. John explains cybercrime risks of most concern to family caregivers caring for family members with health challenges. They discuss trends in home automation and cybercrime, the links between the two, and how these might harm family members whom family caregivers are caring for. Alan highlights questions about risks of cybercrime that family caregivers should ask providers of home automation. John identifies questions about privacy, security and worrying incidents that family caregivers should ask, and who they should ask. Recognizing the increasing challenge of ensuring that the benefits of home automation are not undermined by cybercrime, they identify priorities for the home automation industry, governments and their agencies, and family caregivers.
Wendy Newman is currently Senior Fellow, Faculty of Information, University of Toronto, following a career in librarianship and public policy advocacy. Carolyn Murray is a musician, composer, artist, community volunteer and family caregiver for her 95-year-old parents and her husband following a serious accident. They explain the information needs of family caregivers and the types of information available to them. They discuss the sources of information needed by family caregivers and describe experience in looking for the information. Using family caregiving guidelines as an example, they examine ways in which the information needs of family caregivers can be met. They describe the standards and precautions that should be applied to information that family caregivers rely on. They say how the information resources should be built to meet the needs of family caregivers. They share their messages for family caregivers in light of their growing importance and their diverse needs.
Dr. Lance Levy is a Pediatrician, Bariatric Nutrition specialist, and researcher with a multi-disciplinary practice in Toronto specializing in the treatment of severely overweight children and adults. Kim Banting is a Registered Nutritional Consultant who graduated with honors from the Global College of Natural Medicine and a member of the International Organization of Nutritional Consultants. She began her own business, Flourish, in 2009. They describe their work with young people with challenges such as ADHD, Autism, Obesity and Sleep Disorders. They highlight what’s known about the trends and links among the challenges and disorders as these relate to young people. They discuss what current research is revealing. They talk about the role of family caregivers in caring for family members with the disorders and identify information needs of family caregivers. As activists, they state the priorities they see for family caregivers, the healthcare system and the food industry.
Lucie Shaw and her husband David own and operate Nurse Next Door in Mississauga, Ontario. She explains why they decided to go into the business and how personal experience of family caregiving influenced them. She describes how she and her team work with family caregivers. She explains what home actually means in ‘aging at home’. She highlights the needs of family caregivers and the challenges they face in caring for family members aging at home, and for the family members they’re caring for, and identifies the services and solutions for needs of families in the various home arrangements. She describes the ways in which she sees family caregivers’ needs evolving as more and more of them care for family members aging at home. She says how she thinks the healthcare and social systems should enhance the support they provide for family caregivers caring for a family member aging at home. She gives her message for family caregivers caring for a family member aging at home.
Jonathan Bida is a lawyer in the class action group at Koskie Minsky LLP. Bob Seed is the lead plaintiff in a class-action against the Brantford school for the blind and visually impaired, which he attended from 1954 to 1965. They explain what the class action seeks to achieve, and how the allegations relate to experience of care at the school. They explain the class action and its different stages and what the court will be asked to decide. They discuss responsibilities and attitudes. They talk about the ways in which staff and administrator responsibilities did or should reflect standards of care. Regarding care for the students, they discuss the role of family caregivers. They discuss how the class-action could help remove any remaining stigmatization of persons with vision and hearing challenges. They say what former and current students can do to get involved in the class action, and what the class-action’s messages are for persons with special needs and for family caregivers.
Bill Clark, a British movie maker, talks about Starfish, his movie of family caregiving and community support. He describes his background, career, current work in movie-making, and experience of family caregiving. He explains what Starfish is about, the stage its production has reached, and the future he sees for it. He discusses its background, where the name comes from, what led him to make it, and the support he receives in making it. He explains what’s meant by ‘back story’, what this is for Starfish, and what made it so appealing to him. He talks about the back stories of the people whose stories are told in Starfish. He tells us about the making of Starfish and the challenges he encountered, and his ambitions for it. He talks about using movies to tell the stories of family caregiving and its community of family caregivers, and what makes stories successful for movies. He shares his message for family caregivers with powerful stories like those in Starfish. www.origamifilms.com
Mary Jane McNally is the Senior Director of Nursing at Toronto Western Hospital and University Health Network, where she provides leadership for advancing academic nursing practice, education, and research. She describes the research she and her colleagues at the hospital are conducting. She discusses the implications of the research for family caregivers. She talks about the evolution of communications with family caregivers whose family members are patients of the hospital, and about role the family caregiver has as advocate for the family member. She discusses the hospital’s communications with family caregivers as a community engaged with the hospital, and says how she sees the evolution of role of modern internet communications. She shares her messages for family caregivers, community-based professional caregivers and caregiving organizations regarding the importance of the place of family caregivers as healthcare team members in the changing world of hospital-based healthcare.
Kory Earle, President of People First of Canada, explains why his organization is needed in today’s society. He describes his own life. He explains how labels like ‘Developmentally Disabled’ cause labeled people not to be viewed as people, not to be listened to, and not to be understood. He discusses the challenges for labeled people when they try to make decisions for themselves. He identifies the rights that labeled people and their families lack. He discusses changes needed to help labeled people join together, keep themselves informed, get their voices heard, support each other, be better respected by the community and to live a good life. Referring to the class-action suits against the Province of Ontario brought by labeled people and their families regarding the care or lack of care they received in certain government residential institutions, he shares the message he believes should be heard and understood by the people of Canada, the politicians and the healthcare system.
Arthur Kupperman has been an entrepreneur for more than 30 years, after deciding to leave the field of public accounting. His website, My Senior Portal, and his family experience led his interest in keeping and restoring his own family’s memories. He explains what memories mean for him and his family. He says why keeping memories matters in families, and describes how family memories become part of the family’s heritage. He explains the value of keeping family memories for seniors whose memories may be starting to fail. He explores the universal appeal of storing memories and warns about the one thing he sees as the downside. He discusses technology used to store memories, and highlights the things that seem most practical for families. He encourages families to prize and store their family memories, stresses the need for organization within the family, identifies the cost, and explains what his service, My Senior Portal, can do to help families wanting to cherish their memories.
Dr. Chris Summerville, a non-government director of the Mental Health Commission of Canada, is also CEO of the Schizophrenia Society of Canada. He explains his work in schizophrenia and describes his personal experience of family caregiving. He compares the policies on family caregiving of the Mental Health Commission of Canada and the Health Council of Canada. He says how family caregiving’s role and value in schizophrenia is seen by the mental health care system. He examines the challenges for family caregivers arising with high-risk behaviors of family members with schizophrenia. He discusses attitudes to family caregiving from a historical perspective. He identifies needs for help for family caregivers involved with the social, justice and mental health systems. He distills messages relative to care for schizophrenia which he sees in the class actions now certified against the Province of Ontario. He gives his messages to healthcare systems, governments and family caregivers.
Dr. Janet Smylie is a family physician, public health researcher and research scientist who leads an Aboriginal Research program at the Centre for Research on Inner City Health, at St. Michael’s hospital, Toronto. Mabel Horton, RN, holds a Masters in Public Administration. She has key roles in electronic health record and related projects of the Assembly of Manitoba Chiefs. They discuss electronic health records for Aboriginal peoples from physician and nursing perspectives. They analyze the impact of record systems on privacy and autonomy on Aboriginal peoples and their communities, summarize the challenges, and explain the steps taken by the communities to provide for protections and support. They say what developments are still needed to ensure that the communities fully benefit from the record systems. They state their messages for physicians caring for Aboriginal people living on and off reserve and stress the need to listen to Aboriginal people to understand their needs.
Dr. Susan Thouin is a physician practicing in the greater Toronto area. She’s an owner of MD Care Connect. Karen Pivnick owns Topcat Relocation Transition Solutions. They talk about their work and experience with family caregiving. They discuss the problems created for care in the community, that is care outside of hospitals, by the pressures on the healthcare system. They explain the effects of these problems for family doctors and family caregivers, and identify those they think are the most serious. They explain the types of help the family caregivers need from family doctors and the types of solutions that family doctors can bring to family caregivers, given all the pressures. They identify the most important solutions for family caregivers’ challenges that they think family doctors can provide. They say what more they would like to see done to promote family doctor services for family caregivers, and they give their messages for family doctors and for family caregivers.
Dr. Lori Schindel Martin is Associate Professor, Associate Director, School of Nursing, Ryerson University, Toronto, Canada, and Chair, Gentle Persuasive Approaches Advisory Committee. Amy MacFarlane is Founder and CEO of Recreational Respite Inc., which provides for creative living and innovative care. They talk about their programs and the needs these meet. They explain gentleness in caring, and what has been learned from its application in the training of healthcare professionals and family caregivers. They discuss modern attitudes to mental illnesses in light of past approaches to mental illnesses that led to treatment that was unsympathetic or even cruel. They explain how their programs are changing attitudes towards family caregivers caring for family members with mental illnesses and towards mental illnesses. They say what they would like to see done to promote gentleness in caring for persons with mental health conditions, and they give their messages for family caregivers.
Elyn R. Saks is Professor of Law, Psychology, and Psychiatry and the Behavioral Sciences at the University of Southern California Gould School of Law; Adjunct Professor of Psychiatry at the University of California, San Diego, School of Medicine among other appointments. Dr Lisa Doupe is an MD and a Fellow of the American College of Occupational and Environmental Medicine. She is a General Practice Psychotherapist specialized in care of persons whose high-risk behaviors involve them with the justice system. They discuss autonomy for persons with psychosis-related and other mental illnesses, how questions of autonomy arise, the importance of autonomy, the idea of autonomy shared with family caregivers, and key safeguards, such as the person’s freedom to change their minds about sharing autonomy. They discuss electronic health records’ impact on persons’ autonomy. They say what more they would they like to see done to promote autonomy and shared autonomy with appropriate safeguards.
John G. Abbott is the Health Council of Canada’s Chief Executive Officer. He describes the Council’s work. He highlights the Council’s report, ‘Seniors in need, caregivers in distress’. He discusses the roles of caregivers, family caregivers, informal caregivers, and personal service workers. He compares the current state of family caregiving in Canada with that elsewhere. He instances the benefits that family caregivers bring to seniors and to the healthcare system faced with an aging population. He analyzes the challenges that family caregivers face in caring for their aging family members, especially those who are living with Alzheimer’s disease and the like. He identifies the needs of family caregivers caring for seniors and explores how well healthcare and social systems are helping family caregivers with these needs. He gives examples of success stories, summarize the report’s recommendations for its messages for the healthcare system, for governments and for family caregivers.
Dr. Andrea Slane is an Associate Professor in the Legal Studies Program at the University of Ontario Institute of Technology in Oshawa, Ontario. Dr. Bill Bonner is Associate Professor at the Paul J. Hill School of Business, University of Regina, Saskatchewan, where he teaches on the subject of management information systems. They explain what snooping is, who snoopers are and the types of risks they create for people whose personal information is carried in information-technology systems. They discuss the ways snoopers use information technology for snooping and how the law responds to the snooping. They identify the harms caused by snooping and how the law applies to these. They discuss the challenges in improving protection technically and through the law. They say what more they would like to see done to promote privacy protection for members of families whose health conditions make them especially vulnerable to harm from snooping. They have messages for family caregivers.
Terry d’Silva is an entrepreneur, electronic engineer, inventor and businessman. Mon Ami, his latest invention, has the potential to improve the quality of life for seniors and for people with handicaps and their family caregivers, and to support Active Aging. Alan Majer founded GoodRobot.com. His current venture uses technology to help the elderly live independently in their homes by sharing information with family and caregivers. They explain why they got involved with home automation. They discuss the family caregiver guideline they are both working on, which explains things family caregivers should think about when they are considering home automation. They highlight home automation’s benefits and risks. To minimize the risks, they explain what family caregivers themselves can do, what suppliers and vendors of home automation systems can and should do, and how healthcare professionals can help. They give their messages to family caregivers thinking about home automation.
Angela Arsenio is the Manager of the Powerhouse Project. Brianna Kane is 18 years old and Big Sister to a 12 year old girl with floating harbor syndrome, a rare genetic disease. They each talk about their experience as young caregivers in their own families and how they became involved in caregiving outside their families. Angela describes the Powerhouse Project and Brianna says how she became involved. They discuss the things that young caregivers do, the challenges they face, and the health challenges of the persons they are caring for. The describe how the Powerhouse project and the young caregivers work with the families of the persons they are caring for. They talk about the successes and the satisfactions experienced by young caregivers, and the way their school work can benefit from their caregiving work. They each say what more they would like to see done to promote the work of young caregivers and to get them more recognition. They each have messages for young caregivers.
Sara Winter has a twelve year-old nephew on the autism spectrum. She’s been his aide at school for a decade. She’s the mom of two boys, one with ADHD, anxiety and celiac disease. In Toronto, she created squag.com, a website to encourage kids of 8+ with autism. Her parent-child communication system SquagpadTM is now being tested. Kristina Chew is an Associate Professor of Classics at Saint Peter's College in Jersey City, New Jersey. She blogs daily about life raising her teenage autistic son, Charlie, at We Go With Him (http://autism.typepad.com) and about education, disability issues and human rights. They talk about their experience as caregivers for children with autism. They explain what communications actually means for children with autism, and how it includes special signals and, at times, silence. They discuss what they’ve learned from their children about communications and how information technology is used to help children, including their own, achieve their potentials.
Dr Gabriel Radvansky is an author of “Walking through doorways - how forgetting works normally”, a title which he explains. He’s Professor in the Department of Psychology, University of Notre Dame, IN. He describes the questions his research would answer and the answers he got. He explains his conclusions about the ways forgetting normally works. He says why the brain normally forgets things and explains why this forgetting is not only normal, but also useful. He says young and older adults forget in the same way and that older adults’ memory function may be as good as that of young adults. He explains how his research findings help family caregivers understand when forgetting is starting to be not so normal. He says why family caregivers concerned about forgetting problems in family members and in themselves would be helped by knowing more about the ways forgetting normally works. He urges family caregivers to keep themselves informed about the ways memory works normally.
Dr. Robert S. Porter, editor-in-chief of The Merck Manuals, and Christene Gordon, Director of Client Services and Programs, Canada’s Alzheimer Society, discuss family caregivers’ information needs about Alzheimer’s disease. They describe the One-Page Merck Manual of Health and highlight the questions that family caregivers ask the Alzheimer’s Society. They say what information is needed by family caregivers about the first signs and worrisome trends of the disease. They explain the information needed by family caregivers about various aspects of Alzheimer’s disease including substance use and medications, diet and nutrition, injuries, infection, health generally, including personal and oral hygiene, and exercise and sleep. They stress the importance of information about self-care for family caregivers, whose job they see as hard, stressful and continuing. They share their key messages to family caregivers concerned about getting information to help them care for their family members.
Judith Snow, MA, is a social innovator and an advocate for inclusion communities that welcome participation by a wide diversity of people. She describes her career and life’s work as an artist. She explains what inclusion is, what brought her to believe in it, and how she uses art to advance it. She says what inclusion values, and who it creates value for. She describes the opportunities it brings, and explains their value. She identifies challenges that inclusion confronts, says why family caregivers should be interested in it, and explains what it means for children with special needs. She talks about communications for strengthening inclusion. She describes the play that’s been written about her. She says what needs to be done to improve understanding of inclusion. She tell us what more she wants to see done to promote inclusion for children and adults and their family caregivers. She gives us her message for family caregivers. Her work is shown at www.judithsnow.org.
Bart Mindszenthy hosts www.mycarejourney.com, a community for family members caring for aging parents and other loved ones. He says how his family caregiving experience, background, and life’s work activated him in supporting family caregiving. He talks about Baby Boomers as family caregivers, identifies the health conditions for which they most commonly provide care, and the types of care that the family members need. He explains the types of help Baby Boomers need when they are family caregivers, where the help comes from, and what types of help they find difficult to get. He discusses the effects of age on Baby Boomers’ own health, and the challenges these effects generate for them and their family members. He explains why planning is so important. He discusses the future for Baby Boomers as family caregivers given that family caregiving is getting more and more important as the population ages. He states his message for Baby Boomers who are starting out as family caregivers.
Bill Archer develops pulsed electromagnetic wave field therapy as an alternative for pain management. He says what he learned about family caregivers’ needs from his own family caregiving experience, and what got him interested in the problem of pain. He describes the types of pain and the problems these cause. He explains the problems associated with pain relief. He describes the pain relief offered by the electromagnetic therapy, how it works, and the evidence that it works. He identifies the types of pain for which he does and does not recommend it. He talks about the things family caregivers should think about in helping family members who experience persistent pain, what they should think about if they are worried about the use of medications by family members in persistent pain, and when and why they should consider the electromagnetic therapy as an alternative to medications. He gives his message for family caregivers who are caring for a family member in persistent pain.
Dr Carlos Quiñonez, dentist and researcher, is Director of the Specialty Training Program in Dental Public Health, Faculty of Dentistry, University of Toronto. Julie DiNardo, dental hygienist, has an independent dental hygiene office. They say why oral hygiene so important for people who are living at home with health challenges for which there is no medical cure, and describe the things that family caregivers do to promote oral hygiene for family members who cannot fully care for themselves, and why it matters that family caregivers can effectively promote their oral hygiene. They describe the guidance they offer to family caregivers caring for adults with depression and diabetes; and for children with Down syndrome and fetal alcohol syndrome. They say what they would like to see done to enhance support for family caregivers promoting oral hygiene for loved ones living at home. They have messages for family caregivers who are concerned about the oral hygiene of their family members.
Martha Eleen is an artist whose work has been exhibited in the US, Canada, Mexico and Japan. She’s created an art show about Gabe, her son with special needs. She describes the show and explains what he says about it. She describes her most difficult challenges in caring for him. She describes his most difficult challenges. She highlights the way in which the language used by people who don’t know either of them amounts to a form of systemic bias. She describes the importance of sound in his life and his happiness in his caring environment of an extended family of caregivers. She explains the stresses of family caregiving and how she is able to maintain her life as an artist. She says what more she would like to do and see done in communities to promote art as a language of communication for families with members with special needs. And what she wants to see happen so that persons with special needs are treated as individuals with interests, ambitions and abilities.
Jeff Noble, who has ADHD, is advocate, trainer and coach for caregivers involved with Fetal Alcohol Spectrum Disorder (FASD). He has ADHD. He says how he became a foster parent of a young man with FASD, and how this changed his life. He explains his slogan ‘FASD is forever, frustration is not’. He describes the things he’s learned about FASD kids, foster-parenting for them, and the needs of families caring for them. He talks about the challenges that FASD creates for foster parents, and discusses the types of help with these challenges that foster parents need. He gives advice to foster parents about their own lives. He explains the types of communication that foster parents need with other foster parents. He talks about questions that he and others want to be answered as a result of various class-actions lawsuits, the need for more open discussion about FASD, and gives his message to family caregivers, foster parents or otherwise, caring for a family member with FASD.
Alex Cameron, lawyer with the law firm Fasken Martineau in Toronto, practises in privacy law. Dr. Bill Bonner, Associate Professor at the Paul J. Hill School of Business, University of Regina, Saskatchewan, conducts privacy research. They explain their interest, work, research and studies in privacy. They discuss what privacy and respect for privacy means with so much information travelling the world electronically. They highlight the risks arising from unprotected privacy, say how privacy is protected, and discuss responsibilities for providing protection. They talk about consent and implied consent to disclosure of private information. They discuss the role of family caregivers in protecting the privacy of family members who aren’t able to make consent decisions for themselves. They each highlight the things they would like to see done to strengthen respect for privacy in the electronic world and say who should do these things. Each shares a message to family caregivers.
JC Sulzenko, ”JC”, is the author of a one-act play about dementia for children, What my grandma means to say. Kristen Irvine is a Personal Support Worker currently supporting her grandmother who has Alzheimer’s disease. JC explains how she came to write the play. Kristen describes the things she’s learned about Alzheimer’s disease by helping her Grandma. JC reads the play, and tells us about the young people it’s written for. She talks about audience reactions. Kristen describes her reaction JC shares her plans for taking the play to more audiences, and Kristen provides suggestions for reaching more young people and families. They discuss the value of the play to families, adults and healthcare professionals. They say what the two most important things are that need to be done to encourage more young people to help family members with Alzheimer’s disease, and say who should do these things. They give their messages to young people with a grandparent with Alzheimer’s disease.
Ella Amir is Executive Director of AMI-Québec. Jean Claude Benitah is Vice-President, Board member, Chairman of the Political Action Committee, and Member of the Strategic Planning Committee of AMI-Québec. They talk about their involvement with family caregivers and family caregiving in families with a member with mental illness. They explain AMI-Québec’s history, mission and services. They describe the help that family caregivers seek, and the challenges that mental illnesses create for family caregivers, and the need for family caregiver support after a family member is discharged from hospital. They describe the challenges that arise in their work and give examples of successes and hope brought by the services provided by AMI-Québec. They say what more they would like to see done to bring more help to family caregivers caring for family members with mental illnesses. They each share their messages to family caregivers caring for a family member with mental illness.
Bob Pearson is President of Kimmel of Canada. Neila Curtin is responsible for oversight of the operation of the retirement home portfolio of Greenwood Retirement Communities. They say how and why they got involved with problems of seniors’ slips and falls, and how these influence their work. They discuss ways to prevent fail seniors’ slips and falls, explain where the risks are greatest at home and in facilities, and say what family caregivers should think and ask about. They discuss what happens after a senior’s serious fall, what emergency planning involves, and what family caregivers should know. They discuss the things that family caregivers should consider when a senior who’s had serious fall is discharged from hospital. They describe the things they would like to see done to improve slip and fall prevention and to improve the support for people and their families when a family member is recovering from a serious fall. They share their personal messages with family caregivers.
Alan Majer is the founder of GoodRobot.com. This uses technology to help elderly people live independently in their homes by sharing information with family caregivers. He explains how the technology works in the home. He discusses the types of challenges faced by family caregivers and the family members they care for and says how GoodRobot helps overcome these. He explains the challenges created for family caregivers and family members by technologies like GoodRobot and says what the solutions are. He says what more he would like to see done to bring more helpful technology to family caregivers and the family members they are caring for. He says what more needs to be done to help family caregivers and their family members understand how technology helps them and the challenges it may create for them, and whether there is a place for a family care guideline. He shares his strongest message to family caregivers considering technology as a way of helping them care for a family member.
How well children and adults with various mental health and other conditions were cared for in the Ontario government’s Huronia Regional Centre, closed in 2009, will be examined in a class-action lawsuit which goes to trial on September 30, 2013 in Ontario. Jody Brown, an associate with the law firm Koskie Minsky LLP, and Bruce Ritchie, Moderator & CEO of FASlink Fetal Alcohol Disorders Society, and a single father of a son who was diagnosed with FAS as an infant, explain the lawsuit, the allegations, and the questions of responsibilities, and say what the Court will be asked to decide. They discuss the health conditions that are likely to have affected the children and adults. They discuss fetal alcohol spectrum disorder as one example. They analyze what is known about the standard of care in the facility, consider the roles of the medical and legal professions, and talk about the likely implications of the case for attitudes to mental illness and the care it needs in Canada.
Raymond Applebaum is the CEO of Peel Senior Link, a non-profit charitable organization that makes independent living possible for seniors. Amy MacFarlane is Founder and CEO of Recreational Respite Inc., a company which provides for creative living and innovative care. They tell us how they came to be interested in services for seniors and their family caregivers. They describe the services their organizations offer. They explain what’s meant by supporting family caregivers directly and the types of direct supports, including direct pay, most likely to be useful to family caregivers. They discuss the challenges in providing direct support to family caregivers, including the meeting costs. They say what more they would like to see done to bring more direct services to family caregivers caring for family members who are aging normally and for also those who are living with Alzheimer’s disease. They give their messages to family caregivers making decisions about help for seniors.
Laurie Orlov advises large organizations as well as non-profits and entrepreneurs about trends and opportunities in the age-related technology market. Gail Hunt is President & CEO of the National Alliance for Caregiving, a non-profit coalition dedicated to research and national programs for family caregivers and professionals who serve them. They say how they came to be interested in technology for home care, and explain the services for family caregivers offered through their work and organizations. They talk about the important survey they were both were involved with and what was discovered about family caregivers’ challenges and the way in which they are most likely to be helped by home care technology. They identify the main challenges that homecare technology is most helpful with. They discuss the challenges that homecare technology brings to family caregivers, and some of the concerns it raises. They summarize their messages to family caregivers considering homecare technology.
Fred Ryall, of Bearing Capital Partners, specializes in estate planning for business owners, professionals, executives and more specifically families who have special needs children. Craig Ross is Associate, Wills, Estates and Trusts, with the law firm, Pallett Valo LLP, whose practice includes advising disabled beneficiaries and guardians for personal care. They tell us how their interest arose in special-needs planning for family caregivers. The say what is meant by special needs planning, and when family caregivers should consider getting legal advice. They talk about the planning challenges for family caregivers with families with special needs. They explain services and support for family caregivers in special-needs families. They address the special-needs family caregivers’ question, What will happen to my child after my death?. They discuss the planning that they would like to see done by the healthcare, social and other systems that special-needs families rely on.
Christine Taylor is the founder and President of Nursing Home Ratings Inc. She explains what led to her interest in helping family caregivers to weigh the options for care for their loved ones. She explains the services she offers. She discusses the types of help family caregivers are looking for in weighing options for care in relation to the types of health conditions affecting their family members. She analyzes the types and options of care for care and relates these to the challenges faced by family caregivers. She talks about challenges of weighing care relative to options, quality and cost. She discussed how the weighing of care options should be influenced by family caregivers’ own challenges, such as their own physical, mental, and financial health. She tells us what more she would like to see done to give more help to family caregivers weighing options for care for family members. She speaks her strongest message for family caregivers weighing care for a family member.
Nicky VanValkenburgh authored ‘Train Your Brain, Transform Your Life: Conquer Attention Deficit Hyperactivity Disorder in 60 Days, Without Ritalin.’ Dave Siever, through his own company, Mind Alive Inc., provides technology for brain training for depression, attention deficit disorder, cognitive decline, insomnia and seasonal affective disorder, and other conditions. They describe how they came to be involved with brain training. They discuss the challenges various mental health conditions create for children and adults, and their family caregivers. They explain how brain training helps with the challenges, and how it works. They talk about their real-life success stories, especially with children. They share their views on the progress that brain training is showing, say what more needs to be done to get the value of brain training better understood by healthcare professionals, and highlight ways to make it available to more persons and family caregivers who need it.
Bill Smith is Managing Director of NSI’s Healthcare practice group. Marc Kealey is Chief Advocate, Kealey & Associates Inc. They say why American and Canadian family caregivers and their families should be interested in drug reform. They explain what’s meant by ‘generic’ and ‘brand-name’ drugs and discuss their differences in costs and medically. They explain how drug plans work in the US and Canada, identify any important gaps, and say what they think needs doing to close the gaps. They discuss planners and politicians’ concerns about ever-rising costs of drugs and drug plans. They say how the supply of generics can be increased and their costs lowered across North America. They highlight the drug reforms they both would like to see to protect drug plans so these continue to support people who rely on them and so they expand to meet future needs. And they say what messages they have for healthcare planners and cost-concerned politicians in Canada and the US.
Sharon Carr, a Registered Nurse with 35 years of nursing experience, and Bill Lougheed, a retiree with a distinguished career, discuss home care for family members provided by family caregivers working with professional caregivers. Sharon says how she became involved with in-home care services for clients and their family caregivers, and what the services are that she provides. Bill talks about his family caregiver and the way she works with the professional services Sharon’s team provides, his needs for caregiving services in his home, and the services he receives. They explore the idea of teamwork in home care for family members when family caregivers are working with professional caregivers, and identify the important things that family caregivers need to know so the teamwork succeeds. They both share the teamwork messages they would like to give to family caregivers who are wondering about professional services to help their loved ones stay at home for as long as possible.
Dr Kenneth Herman is a Board Certified Clinical Psychologist and Fellow in the American Academy of Clinical Psychologists. He is also the author of the self-help book “Secrets from the Sofa: A Psychologist’s Guide to Achieving Personal Peace.” Dr Herman was the Director of The Psychological Service in Teaneck, New Jersey for many years. He has also taught on the university level, consulted in industry, conducted research, and lectured extensively in the field of Mental Health. He has appeared on numerous radio and television programs. He currently promotes his book, which has been the recipient of many literary awards in the categories of Psychology, Mental Health, Health, as a Guide to College Students, and as The Best Personal Growth Book of the Year. Reader’s comments and reviews may be seen on his web site at: www.secretsfromthesofa.com. He also presently serves on the Board of Trustees of a free primary medical care facility in Hackensack, New Jersey for the uninsured.
Dr Tony Calland is the Chairman of the British Medical Association's Medical Ethics Committee. He discusses his background as a physician, his interest in medical ethics and the work of his Committee. He explains who vulnerable adults typically are, what makes them vulnerable, and the things that they are vulnerable to. He talks about safeguarding vulnerable adults, what’s really meant by safeguarding, and what the basics of safeguarding for vulnerable adults really are. He explains what’s meant by abuse and neglect and how safeguarding works in such situations. He describes family physicians’ roles in safeguarding vulnerable adults: how they get involved, what the problems are that they get involved with and how they help especially when vulnerable adults get into trouble with the law. He discusses situations in which vulnerable adults or the police may be in danger. He shares his message to family caregivers caring for a vulnerable adult about the role of the family physician.
Dr. James V. Gambone co-authored ‘Who Says Men Don’t Care?, A Man’s Guide To Balanced and Guilt Free Caregiving’. Bob Smith, a retired firefighter, is the full-time family caregiver for his wife Joan, diagnosed with Alzheimer’s disease in 2004. Jim explains his interest in family caregiving. Bob describes what the felt when he first realized that he was to be the family caregiver for Joan. They talk about men as family caregivers and the ways they approach and get help with family caregiving. Jim summarizes what is known about men as family caregivers. Bob explains how his approach to family caregiving changed in the time he’s been caring for Joan, and the help he gets. Jim talks about the way men differ from women in their approach to family caregiving. They discuss Jim’s self-assessment system, which Bob has applied to himself. Jim explains how grief and depression differ. They offer the message they each want to share with family caregivers facing the challenges that Bob faces.
Audrey Miller is the founder and Managing Director of Elder Caring Inc. Dr. Renee Ruiter-Kohn provides various services including individual case management, interpersonal counselling and vocational counselling. Both have personal experience of family caregiving. They describe their work and the services they provide for families where feuding is a problem. They explain the ways in which feuding develops in families, and how it affects members of families such as immediate family caregivers and their siblings, children of parents in their declining years, and parents of children with severe and incurable medical conditions. They discuss the challenges that cause family feuding and, using their own personal experience and the insights they’ve gained from their professional work, talk about steps to prevent feuding from occurring and what to do when it does occur. They share their ‘wish list’ of things that they advocate for families to reduce the risks of family feuding.
Gerard Allard, who entered politics as a Manitoba Liberal, is a City of Winnipeg police officer with 24 years of service. Bruce Ritchie is Moderator & CEO of FASlink Fetal Alcohol Disorders Society, and single father of a son who was diagnosed with fetal alcohol syndrome as an infant. They describe young adults who get into trouble with the justice system. They discuss the challenges mental health conditions bring to young adults. They explain the problems with mental functioning that cause the young adults to get into trouble. They share views about the ways in which the police and the justice system deal with young adults with mental health challenges. They say how serious the social consequences are, and discuss the ways in which the existing systems affect the social consequences. They talk about the help that’s needed by the young adults and the police. They say what they believe needs to be done to address the consequences, reduce the harm, and to bring about prevention.
Professor Steve Joordens is a psychologist who specializes in research in memory and consciousness. He explains what ‘cognitive’ and ‘cognition’ mean, and how these relate to memory and memories. He describes how he researches memory and some of the advances he has made, along with his PhD student, Dwayne Paré. He explains how memory works, how the brain stores memories and how it retrieves them. He talks about what happens when we forget something, and how we can use knowledge of how memory works to help us make the best of it. He talks about how aging affects the way the brain stores and recalls memories. He explains how we can improve our brain’s memory capabilities as we go through the normal phases of life. He shares with us the things that family caregivers should understand about the effects of normal aging on memory and memories of seniors, and states the message he would like to pass to family caregivers concerned about a loved one’s memory and memories.
Léony deGraaf chairs the Burlington Seniors & Law-Enforcement Together Council which educates seniors on crime-prevention. Mark Wandersee is a family caregiver, trained educator, public speaker, and healing coach closely involved with caregiver issues and advocacy. They say what ‘ Stealing from Mom and Dad ’ really means and explain the stress it causes for and within families. They explain the seriousness of the problem in North America. They identify signals that alert financial professionals to the possibility that stealing from mom and dad may be occurring within or outside the family. They discuss the ways financial services and financial professionals attempt to combat the problem. They identify the greatest challenges in protecting seniors. They talk about the limitations of the financial, legal and medical systems in combating the problem and how well understood the problem is. They share the messages that they would like to pass to these systems and to family caregivers.
Felicia Valo is a member of the Board of Directors of the ALS Society of Canada, and she chairs its Advocacy Committee. Her late husband, Sidney Valo, battled ALS for 3 1/2 years before succumbing to the disease in December 2008. Denise Burdon is a Public Health Dental Hygienist and a member of York Region ALS Outreach Program. She holds the Diploma in Dental Hygiene from Algonquin College and a Degree in Dental Hygiene, University of British Columbia. They discuss the family caregiver experience of ALS, and the work of the dental hygienist providing oral healthcare to people with ALS. They explain the services needed by people with ALS and their family caregivers. They say how dental hygiene services should be organized so that they progressively meet the needs of people at the various stages of ALS. They pass a message to family caregivers, healthcare professionals and the healthcare system about the importance of helping family caregivers caring for a family member with ALS.
Jack McCarthy is the Executive Director of the Somerset West Community Health Centre since 1989. The Centre provides comprehensive primary health care services targeted to the needs of residents in west central down town Ottawa. Dr Ahmed El-Zoeiby, who holds a PhD in microbiology, is a community pharmacist practicing in Ontario. They discuss their work and the types of communities they serve. They explain health promotion, illness prevention, and community wellbeing in relation to needs and family caregiving in the communities they serve. They discuss caregiver needs in faith-based, culture-based and immigrant communities. They describe family caregivers’ needs and ways to address these needs where a family member is living with a health condition for which there is no cure. They explain to family caregivers how community health centres and community pharmacists are helping meet the needs of family caregivers in the diverse communities, and say what more help they believe is needed.
Lori La Bey specializes in the psychosocial aspects of Alzheimer’s disease. She explains her work and her experience as a family caregiver for her mother with Alzheimer’s disease. She tells us what people are looking for when they connect with her Blog ‘AlzheimersSpeaks.com’. She describes the challenges Alzheimer’s disease creates for family caregivers. She talks about the experiences of family caregivers she connects with who are coping with these challenges. She explains what she means by ‘crisis’ and ‘comfort’ when she speaks of ‘shifting caregiving from crisis to comfort’. She tells us what she says to family caregivers who fell selfish in seeking comfort for themselves. She says how well she thinks healthcare professionals understand the idea of shifting from crisis to comfort, and what this really means for family caregivers. She describes the movement of family caregivers and persons with Alzheimer’s disease that’s growing around the idea of shifting from crisis to comfort.
Nicky VanValkenburgh is the author of ‘Train Your Brain, Transform Your Life: Conquer Attention Deficit Hyperactivity Disorder in 60 Days, Without Ritalin.’ She talks about the book, and the story it tells of her own personal experience with medications, brain training and ADHD. She describes the way ADHD affects children and adults, and the challenges that it creates for family caregivers. She explains the way brain training programs help with ADHD. She says why brain stimulation is so important in treating ADHD, and compares Ritalin, and other medications, with brain training programs in providing stimulation. She describes the limitations of medications, and says why brain training is the better method. While non-specialist healthcare professionals may not yet be fully informed about brain training programs, she says, recognition of the programs’ value is growing as these become more widely available. She shares real-life stories of success in overcoming ADHD, including her own.
Dr. Winston Isaac is a co-founder of The Walnut Foundation, a Men’s Health Interest and Support group dedicated to development and education of Black men and the Black community in taking responsibility for their health. He talks about his work in healthcare. He discusses his own experience with prostate cancer. He describes the Walnut Foundation and what it does. He talks about prostate cancer risk for black men generally, the Caribbean community, and all men. He explains what he sees as the biggest challenges that need to be overcome in battling prostate cancer. He explores the influence of social things, like stigmatization attached to a positive diagnosis, and how can these things be combated. He analyzes how well healthcare professionals understand the challenges faced by men with a prostate-cancer diagnosis. He says what more needs to be done in fighting prostate cancer and what changes he would advocate in a call-to-action speech to an audience of men and their partners.
Dr. Linda Teri is a Member of the Medical & Scientific Advisory Council of the Alzheimer’s Association. She’s Professor of Psychosocial & Community Health at the University of Washington. Amy MacFarlane is Founder and CEO of Recreational Respite Inc, www.recrespite.com, a company which provides for Creative living and innovative care. They talk about Alzheimer’s disease. They discuss real-life examples of caregiver-support programs that helped family caregivers meet the challenges of Alzheimer’s disease. They discuss the ways in which the programs support aging at home. They say how well community-based professionals, such as nurses and physicians, and the wider public understand the family caregiving challenges of Alzheimer’s disease and the role of caregiver-support programs. They describe what is being done to increase understanding and to promote the programs in the US and Canada. And then they tell us how optimistic they feel about progress in coping with Alzheimer’s disease.
Marc Kealey is a lead voice in North America on health reform, integrated health and drug benefit plan enhancement, and healthcare policy. John Wunderlich is an independent information and privacy consultant in Toronto who describes himself as a middle-aged guy with Type II diabetes who’s active in a political party. They discuss diabetes-related challenges. They say how well these challenges are being met by the healthcare system, healthcare professionals and persons with diabetes and their families. For improving the way the challenges are being met, they explore the responsibilities they see for the healthcare system, for healthcare professionals and for persons with diabetes and for their families. Then they say what they would see done to improve responses to the challenges of diabetes, and what would change if their prescriptions for change were implemented.
Gail Fisher-Taylor, and her two sons, Kerr and Skye Wattie, are founders of Kilometres for Communication, http://kilometresforcommunication.com, a national awareness and fundraising campaign for empowering the voices of people who, because of disabilities, must communicate without typical speech. Tracy Shepherd is President of the Canadian Chapter of the International Society of Augmentative and Alternative Communication, http://www.isaac-online.org/en/home.shtml, which promotes awareness of the potential of augmentative and alternative communication (AAC) to enhance lives of individuals unable to speak. They discuss the enormous social and physical challenges experienced by people with serious voice problems. They share with us how people with voices can establish communication with persons without voices. They say how AAC helps meet the challenges of people without voices. They tell us how their two organizations are helping make AAC more widely accessible. They seek new members.
In, ‘Now What?’, SokheChapke Publishing, Dr. JR Harding and his wife and co-author, Erika Richards-Harding describe JR’s journey from adolescence to adulthood via quadriplegia. Living with a significant disability, they say, citing the Americans with Disabilities Act, is natural because of who Americans are and because each one understands intuitively the right and responsibility to pursue life, liberty and the pursuit of happiness.” So there exists no barrier which cannot be overcome. JR tells us how his barrier-bursting journey took him from trauma to triumph. How he was sustained by the family’s love, sacrifices, courage for tough love and vision for his future. How he was supported by the team effort of all the friends, personal care assistants, administrative assistants, coaches, administrators and strangers. Without them, JR says, he wouldn’t be able to share his story, adding intriguingly that he’s changed some names to protect the “innocent and the not so innocent”.
When a family member has a drinking problem, family caregivers may be unsure where to find help. That’s when Al-Anon comes into the picture. Thomas Anon describes his own involvement with Al-Anon, the history and principles of Al-Anon, and about the Al Anon Family Group. He explains what ‘problem drinker’, ‘alcoholic’ and ‘alcoholism’ mean. He describes the types of people who become problem drinkers. He explains the role and challenges Al-Anon sees for family caregivers when a family member is a problem drinker. He discusses the unique type of help that the Al Anon Family Group provides to family caregivers, and what family caregivers can expect from their first Al Anon Family Group meeting. He tells us how well he thinks healthcare professionals and the public generally understand the problems family caregivers experience with problem drinking in the family, and the help they need. He says what more he’d like to see done to promote public understanding of Al-Anon’s work.
Carol Stanley is family caregiver for her 92-year-old father. Based on her own experience, she talks about the challenges for family caregivers in Canada. She discusses the help that she finds helpful. She identifies the help that she needs most but doesn’t receive enough of or even any at all. She analyzes the problems that family caregivers experience in getting help they really need. She explains the challenges for family caregivers generally who are expected by the healthcare system to bear more and more of the burden of aging of the population. She explores the reasons for the challenges, which is that people are living longer and longer so more and more of us are likely to develop the types of diseases for which there is no cure, and that the problems of aging are not recognized unless a disability is diagnosed. To cope with this challenge, she tells us what more she thinks needs to be done to support family caregivers with the help they really need.
Nicole Scheidl is founder of Fit Minds Cognitive Health Products. Laura Bramly is the author of the book, Life Scenes. They explain how they came to be involved in work with Alzheimer’s disease. They discuss therapies for helping with problems of knowing and remembering for persons with the disease. They explain the particular ways in which therapies can help family caregivers and their family members with the serious problems of knowing and remembering that occur with the disease. They highlight the role of family caregivers. They explain how the therapies help family caregivers as well as the persons with the disease they are caring for. Acknowledging that people are living longer and longer so more and more people are likely to develop the disease, and that healthcare planners are planning for more and more for caring at home, they say what more needs to be done to provide more of the benefits for family caregivers of the therapies they’ve described.
Jaentra Gardener was diagnosed in 1977 with multiple sclerosis. She explored every method that might help her overcome this debilitating illness. She not only received but she also studied numerous therapies and techniques. She healed herself. Denise DeJarlais is a healing coach, mystic, creative thinker, and open-hearted, involved person. She and her husband, Robert Peterson, faced his life and death struggle after he was diagnosed with glioblastoma, an aggressive brain cancer. They say why they took up healing. They explain what healing is, and who healers are. They say what healing does and does not promise, and who can benefit from it. They describe the feelings that family members experience when a loved one receives healing. They describe how they work with doctors and nurses. They explain the ways in which they work with family caregivers, especially in the earliest stages of healing, and say how family caregivers can find out more about healing.
Vickie Cammack is President and CEO of Tyze Personal Networks. She explains her reasons for setting up Tyze Networks. She highlights the ways the Networks support family caregivers and the family members they’re caring for, and gives examples of the ways family caregivers have been helped. She discusses the reasons why family caregivers need to communicate among themselves. She points up the circumstances in which family caregivers’ communicating is important. She talks about the health conditions that make family caregivers’ communicating especially important. She explains how family caregiver communications help generally with the health and social support of family members. She answers the question of whether family caregivers are communicating among themselves because they don’t get enough information and similar support from the healthcare and social support systems. She says what more she would like to see done to promote communications among family caregivers.
Bill Brown is a pharmacist, seasoned business executive and entrepreneur. Dr Ahmed El-Zoeiby is a pharmacist with degrees in microbiology and immunology. They describe their work as practicing pharmacists, and discuss the ways in which they help family caregivers, their family members and patients generally. They talk about the challenges for family caregivers when their family members depend on medications. They discuss the particular challenges of medications that cause addictions and that are associated with side effects. They explain the ways in which pharmacies and pharmacies handle the privacy of the personal health information of patients, family caregivers and family members. They say what they would like to see done to done to enable pharmacists to bring more help and greater safeguards for family caregivers and their family members. They say how the help of professional pharmacists can be better explained to family caregivers and their family members, among others.
Constable Patricia Fleischmann of the Toronto Police Service has administrative responsibilities for Vulnerable Persons Issues, including abuse and neglect of older adults, persons with disabilities and mental health conditions. She describes the types of elder abuse she encounters, and says how common these types are. She talks about causes of elder abuse, and health conditions that make seniors especially vulnerable to abuse. She explains what family caregivers and families need to know when elder abuse has occurred. She highlights what is known about in-family elder abuse, and how this typically occurs. She discusses the signs that elder abuse is occurring. She discusses the circumstances in which police charge elder abusers, and explains when and how she recommends family caregivers and families to get in touch with the police. She says what more can be done by police services such as hers to prevent elder abuse, and what more she thinks can be done by family caregivers.
Don Smith and Jane Field have worked together to record Don's life story since meeting in a community literacy program 22 years ago. At the end of 2010 they published ‘Finding My Voice: Stories From My Life’. They tell us how they came to know each other and to work together on the book. They talk about Don’s life with cerebral palsy, about the people who were his family caregivers and about the challenges his family encountered making ends meet. Don talks about his first wheel chair and the way it affected his life. They both discuss Don’s communications challenges. Jane highlights his communications difficulties. Don explains what happened to his communications after his mother died, and the frustrations he subsequently experienced. Jane explains the help Don got with his communications and how he got the help. Don says what makes the sun shine for him. The book can be purchased for $20 plus $5 shipping and handling from Jane at: janefieldwrites@gmail.com
Amy MacFarlane is Founder and CEO of Recreational Respite Inc, www.recrespite.com, which provides creative living and innovative care services. She explains recreation therapy and talks about the challenges that it helps with. She describes the special needs and health conditions for which she recommends recreation therapy. She explains why and how recreation therapy helps persons and their family caregivers meet the challenges that these conditions create. She describes some real-life examples. She talks about organizing recreation therapy for persons living at home alone, with their families, or in a care facility. For these various situations, she explains how recreation therapy helps family caregivers. She explains how recreation therapy helps aging at home, a policy favoured by governments. She says what she would like to see done to extend, expand and increase funding for recreation therapy. She explains what family caregivers can do to help promote recreation therapy.
Marc Kealey, Chief Advocate, Kealey & Associates, is a lead voice in North America on health reform, enhancement of health and drug plans, and healthcare policy. He describes his own experience with family caregiving, and way this has influenced his views on healthcare reform. He explains the three toughest challenges for healthcare reform in North America. He talks about the challenges for family caregiving, the ways family caregivers help the healthcare system, and the help family caregivers get, and don’t get, from the healthcare system. He identifies the health conditions for which family caregivers particularly need more help, and about the help they need. He explores the help for family caregivers that healthcare reform currently visions, and tells us what he would like to see done through healthcare reform to get more help for family caregivers, and from where and how the help should be provided. He suggests ways in which family caregivers can influence healthcare reformers.
Al Etmanski is co-founder and President of Planned Lifetime Advocacy Network, (www.plan.ca), which assists families in Canada and globally in addressing the financial and social well-being of relatives with a disability, particularly after their parents die. He talks about his career and his own family’s experience with family caregiving. He discusses the especially challenging challenges faced by family caregivers and the way passionate amateurs with innovative instincts help family caregivers and their family members face these challenges. He gives some real-life examples. He compares passionate amateurs’ innovations for family caregiving with those of the big players in healthcare: government healthcare systems, for-profit healthcare organizations, and charitable healthcare organizations. He says what he would like to see done by academic and research sectors, healthcare systems and healthcare professions to encourage passionate amateurs to do more to help family caregiving.
Barbara Burnett is Executive Director, Community Management, with Seniors For Seniors. She describes her career, her work and her experience with family caregiving. She discusses the challenges for seniors, and explains what makes these so challenging. She describes how seniors’ support helps seniors and their family caregivers meet the challenges involved in living at home, living a long way away, or living in long-term care facilities. She talks about aging at home and tell us how well the needs of seniors are communicated to healthcare planners from programs like these, and what she sees as ways of improving these communications. She explains how well or otherwise the needs of seniors are generally understood and what she sees as ways of improving understanding of key needs, such as those in culture-based, faith-based and immigrant communities. She tells us what she would like to see done to enable more seniors to bring more help to seniors and family caregivers caring for them.
Sheikh Alaa the Director of Religious Affairs for the Islamic Centre of Canada-ISNA and Ahmed El-Zoeiby is a licensed pharmacist practicing in Canada. They talk about their work and their contacts with family caregivers in the Muslim community. They explain how Islamic values relate to family caregiving. sheikh Alaa highlights the challenges that he hears about from family caregivers, and describes the challenges that seem most difficult. Ahmed describes the challenges that family caregivers experience with medications for their family members and with healthcare generally. sheikh Alaa says how well the needs of family caregivers in the Muslim community are understood by the social services, and how communications can be improved. Ahmed says how well the needs of family caregivers in the Muslim community are understood by the healthcare system, and how communications can be improved. They both say how they would like to see help improved for family caregivers in immigrant communities.
Terry D’Silva is an electronic engineer, inventor and businessman and founder of Tertec Enterprises Inc, a successful international technology company. His latest invention, Mon Ami, could widely impact society by improving the quality of life for seniors, people with handicaps and their family caregivers, and to provide a platform for active aging. He describes his own family’s experience with health-related challenges and the role of family caregiving in his family life. He talks about the technology solutions, including Mon Ami, he developed to meet these needs. He explains how his family’s experience with family caregiving influenced the information technology in the products and services that Tertec offers. He talks about how well the needs of family caregivers are understood by the information technology industry and healthcare, and how to improve this understanding. He says what he would like to see done to bring more help to family caregivers through information technology.
Samuel Getachew is an Ethiopian Canadian activist with a passion for Canadian and American politics and community activism. He tells us about his own experience with family caregiving in his extended family. He discusses the challenges faced by family caregivers in the immigrant communities he works with, and generally. He analyzes the challenges these family caregivers face with the healthcare system. He says how well he thinks healthcare professionals like doctors and nurses understand the challenges faced by the family caregivers. He discusses how well the healthcare system as a whole understands the family caregivers’ challenges, and how well governments understand them. He explains what his political platform would be if he were seeking election as a politician determined to help family caregivers, where he thinks the money would come from, and how his platform would help immigrant-community family caregivers get their voices heard.
Sholom Glouberman founded the Patients' Association of Canada. He explains how his own experience as a patient convinced him of the need for an association. He shares his perspectives on family caregiving. He highlights the need for patients to become part of decision-making in healthcare. He answers the question of whether family caregivers should also be included in healthcare decision-making. He discusses the extent to which the role of family caregiving and the needs of family caregivers are understood and acknowledged by doctors, nurses, healthcare managers, medical sociologists, researchers, health care consultants, social workers and others represented in the Association. He explains the ways in which the Association will work with family caregivers and whether it can effectively represent their needs well as those of patients. He answers the question of whether family caregivers’ interests can be advanced through the Association or whether they need one of their own.
Melanie Cooper is a visually impaired teacher. She’s founder and director of the Connect Learning Centre in Toronto, Canada. As a Guest on Family Caregivers Unite in the Episode of July 13, 2010, she explained what she planned for the Centre. Now she brings us up to date with her story of how she got from start-up to the stage at which the Centre delivers all the things it does now. She talks about the people who work with her, about the people who attend the classes, about their stories and experiences, and about the benefits they get from the Centre. She talks about the ways in which she works with family caregivers. She tells us about the challenges she had to overcome. She explains why she wants to encourage people to work with her in various ways and why she would like to help others across North America to do the same thing she’s done. She talks about the future; what she want to do next, how she is going to achieve these things, and the help she is looking for.
Harry van Bommel, Executive Director, Legacies Inc, describes his own experience with family caregiving and his work with vulnerable people in healthcare. He discusses his work in advocating for more and better safeguards for vulnerable persons who are in the care of healthcare facilities. He explains the needs for safeguarding vulnerable persons in healthcare facilities, and gives examples. He highlights the challenges for family caregivers, and describes the approaches he suggests to family caregivers for safeguarding vulnerable family members in the care of healthcare. He explains the things that he would like to see done at government level to provide more and better support for family caregivers faced with vulnerabilities in their families. He shares the things that in his involvements with family caregiving for vulnerable people, in his own family, and in his other work that make the sun to shine for him.
Rochelle Wilner served as National President of B’nai B’rith Canada. Dr Rachel Goldberg is Director of Aging Policy for B’nai B’rith International. They describe the support for family caregiving through B'nai B’rith in Canada and the US. They discuss their experience with family caregiving in their extended families. They explore the challenges that predominate in the Jewish communities in the US and Canada, and identity their most important impacts. They discuss the challenges of distance and demographics for family caregivers, and the importance of community. They tell us about the things that cause the sun to shine for them in their involvements with family caregiving in their extended families and in their work with the Jewish community. They share with us the policies they would advocate if they were politicians standing for election on a platform of support for family caregivers, say what would be the most important messages they’d want to get across to voters.
Deanna Finch-Smith is Executive Director of the Salvation Army Lawson Ministries, which supports adults with developmental disabilities in residential, day, and employment opportunities. Bruce Ritchie is Moderator & CEO of the Fetal Alcohol Disorders Society, and a single father of a son who was diagnosed with FAS as an infant. They describe the work of their organizations. They explore the challenges that mental health conditions create for young adults. They discuss innovative social approaches to the care of young adults with mental health conditions, such as the for-profit business created by the Lawson Ministries, Airborne Films, in which young adults with mental health conditions are employed. They discuss the conclusions they draw about the future of care for young adults with the mental health challenges they talk about, and say what they would like to see done to provide more help for the family caregivers of the young adults.
Colorado-based Alan Arnette retired early to care for his mom who later died from Alzheimer’s disease. Sue Kelly is a registered nurse experienced in public health nursing. She’s Director of Health & Wellness with Canada’s We Care Health Services. They share experiences with family caregiving. Alan explains why the tragedy of his mom’s death transformed him into a champion for the fight against Alzheimer’s disease. Sue explains how her family’s experience with family caregiving inspires her work with family caregivers caring for Alzheimer’s disease. Alan says what family caregiving for Alzheimer’s disease and mountain climbing have in common, and how he wants the funds he raises with mountain climbing to be spent. Sue talks about her work. They talk about the family caregiving experience as the disease progresses from its earliest stages to the end of life. They say what more they want to see done to help family caregivers with their challenges throughout the progress of the disease.
Ann Stewart is executive director/client services with the Multiple Sclerosis Society of Canada, Lethbridge & District Chapter. Paul Zook’s wife, Kim, has secondary progressive multiple sclerosis. For her, the controversial treatment for chronic cerebro-spinal venous insufficiency seemed to offer some hope. Ann and Paul discuss the treatment from the perspectives of the Society and the family caregiver, and also from their own families’ experience. They describe what happened when the news of the treatment first broke, and how they and others reacted to it. They explain the questions that then confronted and still do confront family caregivers and their family members. They discuss the findings so far from medical research into the treatment. They talk about their own hopes for the research. They examine their own perspectives on the treatment. They say what more they want to see done to help family caregivers caring for a family member with multiple sclerosis.
Betty Smith, the family caregiver, is married to Larry, the star of the movie. Andrew Rubin is producer of the film, Ride with Larry. Larry has Parkinson’s disease. All have family experience with Parkinson’s. Betty talks about Larry’s work before and after the Parkinson’s, and how he gets to work on his riding machine. She talks about the ways they together deal with the Parkinson’s, how they their vision of the future affects the things they do and think about each day. Andrew says how he first met Larry and Betty, and what got him thinking about a film. He explains what type of a film it is going to be, how the funds are being raised for it, the audience he wants to reach with it, and what its messages will be for people with Parkinson’s disease and their family caregivers. They both say what more they would like to see done to tell more stories of family caregiving for Parkinson’s and similar conditions, and what more need to be done to provide more help for family caregivers.
Bev Mahone and Pat Montgomery, experienced broadcasters, writers and journalists, are also grandparent family caregivers. They explain how grandparent caregiving has affected their lives and ways of thinking about caregiving. They talk about the grandparent family caregivers they hear from and the challenges these grandparents face including law, rights and red tape, and financial and health challenges. They discuss the questions they are asked and the advice they offer. They describe the blockages that prevent grandparent family caregivers from moving forward. They say what makes the sun shine for them when they hear from grandparents talking about grandparent family caregiving. They talk about the ways in which the grandparents as family caregivers need help, and the type of help they need. They say what they would like to see done to bring more help to grandparent family caregivers and, in particular, what more can be done to help grandparent family caregivers help each other.
Mickey Wener and Mary Bertone are registered dental hygienists engaged in clinical programs at the University of Manitoba. Both have personal experience with family caregiving. They explain why good oral health is so important, how it links with general health, and what problems are created when it isn’t good. They discuss challenges created by poor oral health for persons who aren’t mobile enough to attend a clinic and who are being cared for by a family caregiver at home or in a residential facility. They describe services provided by dental hygienists, and how dental hygienists work with family caregivers in promoting good oral health. They explain how family caregivers can monitor the oral health of family members, and the techniques family caregivers can use to maintain family members’ oral health. They stress the importance of family caregivers and say what more they would like to see done to bring to promote more team work between dental hygienists and family caregivers.
Dr John Sloan specializes in home visiting with the elderly. Noralyn Smiley is a senior who is family caregiver for her mother, a patient of Dr John’s. He calls his patients Sunshiners. They discuss collaborative caregiving and the importance of the family caregiver as a member of the collaborative team. They explain the circumstances that brought Dr John into Noralyn’s Sunshiner caregiving, and generally what family caregivers need from a family physician. They talk about the ways in which the family physician, the collaborative team and the family caregiver work together in meeting the numerous challenges that caring for Sunshiners so often brings. They talk about the questions that family caregivers ask, and the answers that family physicians can and cannot answer. They both say how a home-visiting physician and the collaborative team can provide better care than the hospital, and what they would like to see done to bring more collaborative team work to the homes of Sunshiners.
Dr Gordon Atherley, host of Family Caregivers Unite!, explains what he’s learned from family caregivers in the first 50 Episodes of the show. “I want to talk about the things I’ve learned from listening to all the wonderful people who’ve been my Guests in the first 50 episodes of FCGU!”, he says. Some of the things he’s learned include challenges and successes for family caregivers, how family caregivers help other family caregivers, what family caregiving so often involves, particular types of help that’s available for family caregivers, and the influence of family caregivers on the healthcare system. Then, he says, I’ll ask myself how I intend to apply what I’ve learned so I and Family Caregivers Unite! can be more helpful to family caregivers and family caregiving. And also, he says, how his new website, Family Caregivers Unite, http://www.familycaregiversunite.org/, will enable family caregivers to tell their stories, and give as well as receive help.
Mona Gandy has 12 years’ experience as a licensed realtor in the state of Texas. Asko Marjanovic is a Partner in Avant Garde Real Estate, in Toronto, Ontario, Canada. They talk about the ways in which realtors can help family caregivers who have to sell the homes or businesses of family members because of age or health conditions. They discuss the things that can go wrong and the risks in home or business sales in these circumstances, the concerns that family caregivers have, and the help that realtors can provide. They discuss challenges for family caregivers selling homes or businesses of aging parents affected by dementia and similar health conditions that affect the person’s judgment. They discuss advice for family caregivers in selling homes outside of North America. They talk about the situation for families where there is no family caregiver. They say what should be done to encourage family caregivers to get the help of a good realtor in the sale of a family home or business.
Martha Anderson is Executive Vice President of Donor Services at the Musculoskeletal Transplant Foundation. Dr. Frank Markel is the President and Chief Executive Officer of Trillium Gift of Life Network. They describe organ and tissue donation and the benefits that come from it. They discuss the concerns that people have about organ and tissue donation, and how these are addressed. They explain the importance of the family caregiver in family discussions about potential donations. They talk about the things they say to family caregivers caring for family members nearing the end of life. And the things they say to parents discussing donation with their children with life-threatening conditions. They identify and explain the circumstances in which they would advise a family caregiver not to encourage organ and tissue donation. They say what they would like to see done so that family caregivers are increasingly informed about organ and tissue donation and are encouraged to promote it.
Bob Smith, a retired firefighter now a full-time family caregiver for his wife, and Dr Alexa Roggeveen , a leading researcher, discuss the ways dance helps persons with dementia and their family caregivers. Bob talks about his wife’s health condition and the challenges it creates for them both. Dr Alexa describes the dance classes. They both talk about their experiences with the dance classes, how they help family caregivers and their family members, and how they led to Dr Alexa’s new research into dementia. They both discuss the new research, and say why it is so interesting and important for family caregivers caring for someone with dementia, among other health conditions. Bob says what makes the sun shine for him as a family caregiver. Dr Alexa says what makes the sun shine for her as a researcher involved with family caregivers. They both say what they would like to see done so that dancing classes are extended to and made affordable for more family caregivers in North America.
Lynda Simmons and James Krehbiel are both authors of books about health conditions that involve family caregiving. They talk about the books they’ve written and the ways these reflect aspects of family caregiving. They describe how their own perspectives on family caregiving influence their writing. James discusses his most recent book, ‘Troubled Childhood, Triumphant Life’, which explores circumstances where family caregiving hasn’t worked well. Lynda talks about her most recent book, ‘Island Girl’, a work of fiction about inevitable decline towards the end of life, and explains the role for family caregiving as she portrays it in her book. They both describe the reader whom they had in their mind’s eye when they wrote their last books. They explore the way family caregivers who’ve travelled the hard road of family caregiving turn around and offer help to family caregivers starting out on the road. They tell us about the changes they’d like to see in support for family caregivers.
John Schram and Don Fenn, business executives experienced in home healthcare and family caregiving, discuss the help that long-term care insurance offers family caregivers. They highlight the costs of family caregiving. They identify gaps in publicly funded services and explain how long-term care insurance can help plug these. They examine long-term care insurance for family caregivers whose family caregiving starts in the childhood of a family member with an incurable condition. They identify the services covered by long-term care insurance that support family caregivers caring for a family member aging at home with all the quality of life and health challenges for the family caregiver as well as the family member. They discuss public attitudes to long-term care insurance, and say whether effort is needed to change attitudes of the public and government so that insurance provides more support for long-term care and the family caregivers who provide it.
Joyce Scott is the winner of 2010 national Family Caregiver of the Year Award. Leann Reynolds is President of Homewatch CareGivers. Joyce says what being named the Family Caregiver of the Year for 2010 means to her, describes her experience with family caregiving, and explains how it began. She talks about her family’s tradition of family caregiving. She describes the problems of the people for whom she is family caregiver and others for whom she also provides care. Leann talks about her own experience with family caregiving. She describes what the Family Caregiver of the Year award brings to Joyce. She says how she personally became involved with award, describes its history, explains who is eligible, how people are nominated, and how the award’s winners are selected. They both say what makes the sun shine for them. They discuss the most important challenges for and needs of family caregivers and say how help for family caregivers should be expanded, enhanced and provided.
Dr Kim Bercovitz is a medical sociologist with a PhD in Community Health. Craig Thompson is a freelance digital media producer specializing in the development of online support tools for healthcare. They discuss the challenges created for family caregivers by media reports of the latest research into conditions with potential implications for the family, and how family caregivers follow up on these reports. They explain how research and similar organizations connect and communicate with family caregivers. They discuss the extent to which the Internet is replacing doctors as the source of information about the latest research. They talk about the limitations of some of information on the internet. They discuss what more they’d like to see done by healthcare to explain new developments to family caregivers. They say what’s needed to enhance support for family caregivers and their family members struggling to make sense of the latest findings that could be important to their family.
Kenneth Pope is a lawyer specializing in support for individuals with disabilities and their families. Cynthia Martineau is a registered nurse whose daughter, Rachel, has Rett syndrome. They describe their professional backgrounds and their experience with estate planning for family caregivers with teenaged children with special needs. They highlight the future challenges that concern the family caregivers of such children. They talk about arrangements and questions about future quality of life for maturing children who lack a family caregiver. They explain how estate planning helps answer the question, ‘What will happen to my child when I am gone?’ They say why estate planning is so important for so many family caregivers of children with special needs. They say what’s needed to enhance support for children with special needs who mature as adults and are without family caregivers, and they explain the changes they believe are most needed to improve support for such children.
Susan Fentie-Pearce is the mother of Keith and Kyle. Malcolm Stanley is the father of Megan. All three of these children have autism. Susan and Malcolm talk about their professional backgrounds and their experience as family caregivers for children with autism. They discuss the challenges they have met and continue to meet as family caregivers. They say why and when it is most important for family caregivers to become the eyes, ears and voice of their autistic children. They explain, for a child with autism, when is it important to keep private the information that he or she has the condition, and when is it important for the information to be shared, and with whom should it be shared. They talk about the quality of life for children with autism and their families. They tell us what makes the sun shine for them and their children. They talk about their activism, compare the services that the children and their families need, and say what needs to be done to improve these services.
Joel Gerstel is the Executive Director of the American Parkinson Disease Association. Barbara Snelgrove is Director of Education and Support Services with Parkinson Society Canada. They discuss the notification card for travellers with Parkinson disease developed by the American Association and the medications card produced by the Canadian Society. They explain the challenges that people with Parkinson disease experience when they travel. They explain the perspectives of the transportation security authorities in the US and Canada, and discuss what the cards do and don’t do. They talk about the way cards could be used by family caregivers. They identify the importance of what they term sensitivity on the part of security personnel. And they share ideas for a notification card system that would be internationally recognized for travellers whose health conditions are not obvious but which nevertheless can cause them problems during travel and even in accessing hospitals.
Krishna Stone is Assistant Director of Community Relations in the Communications Department at Gay Men’s Health Crisis (GMHC), based in New York. Glyn Townson is Chair, BC Persons With AIDS Society, based in Vancouver, Canada. They explain the mission and histories of their organizations. They talk about the peer-support services their organizations provide to their respective communities. They discuss the role of peer support in the various stages of HIV/AIDS. They explore the question of when, for a person with HIV/AIDS, is it important to keep private the information that he or she has the condition, and when the information should be shared. They describe the quality of life for persons with HIV/AIDS, and how peer support helps improve the quality of life. They say what changes they believe are most needed to enhance support for persons with HIV/AIDS. They tell us whose best interests are served if the decision makers in our society implement the changes they are advocating.
Chris Summerville is a director of the Mental Health Commission of Canada. Debbie Sirota is a single parent of Tamara, aged 24, who lives with schizophrenia. They discuss services for persons with schizophrenia and their family caregivers, identify challenges the services respond to, and explore experiences. They examine the role of the family caregiver in the various stages of schizophrenia. They discuss the ways in which family caregivers become eyes, ears and voice for the persons they are caring for, and explore the special challenges this responsibility creates for family caregivers. They talk about quality of life for persons with schizophrenia and their family caregivers. They speak frankly about situations in which persons with mental illness suffer from depression, experience stigmatization, and get into trouble with the law. They identify the things that make the sun shine for them personally. They say what changes want to see to bring better support for family caregivers.
Betty Cornelius is President and Founder of Cangrands National Kinship Support, a Canadian organization. Tammy Brockhaus is 61 years of age, and widowed. She coordinates the Cangrands group in Huntsville, Ontario. They are both grandparent kinship carers. Among many tasks, they are activists for changes in law needed to establish grandparents’ rights relative to kinship caring. The explain kinship caring and why it’s needed, and describe their own family experiences to illustrate the value of kinship caring for grandchildren. They discuss the challenges faced by them and others like them, such as finances, getting support, and having their access to granchildren blocked. They explain the situations that cause grandparents to lose access to their grandchildren. They explore grandchildrens’ health problems like fetal alcohol spectrum disorder, and explain why children with severe health problems do best when they are cared for by grandparents. They highlight things they want changed.
Viki Kind is a clinical bioethicist in Los Angeles and Margaret Anderson is founder of Ian Anderson House, a residential cancer hospice in Oakville, Ontario. They identify the challenges for family caregivers when a loved one is at the end of life. They explain ‘compassionate decision making’, ‘hospice’ and ‘palliative care’ and discuss the ways in which these approaches support family caregivers in meeting their challenges. They explore what they see as the rights of people at the end of life and say, in their experience, how physicians and other healthcare professionals view these rights. They talk about the need to manage the expectations of everyone involved, including the person who is approaching the end of life. They examine the information needs of family caregivers and advocacy for and by family caregivers. They discuss the sensitivities of the role of volunteers in end-of-life caring. They explain how quality of life and dignity maintained through end-of-life care.
Ralph James Savarese authored ‘Reasonable People: A Memoir of Autism and Adoption’. Linda Hurren, President of York Autism Centre, is now starting ‘The Making Small Talk Academy”. They talk about their professional backgrounds and describe their experience with family caregiving for autism. Ralph explains what led him to write his book. Linda describes her work in evolving her programs for children and their families involved with autism. They talk about the challenges for children and their family caregivers. They discuss the positive signals that family caregivers receive and the advice that they believe family caregivers need to interpret these signals. They highlight the importance of inclusion in school, workplace and community. They each point to the things they have found to bring optimism for family caregivers involved with autism. They identify the things that need to be done to improve optimism-building support for family caregivers involved with autism in North America.
Cindy Laverty is founder The Care Company, based in Southern California. Marilyn Spencer is family caregiver for her mother, who is enduring the ravages of Alzheimer’s disease. They explain how they each became involved with Eldercaring. They analyze their personal experiences with Eldercaring. They discuss the key challenges for family caregivers involved in Eldercaring. Cindy outlines the key points in her book, and the questions that her radio show receives. Marilyn talks about the ways she has dealt with the challenges, and what she has learned from them. They both explain the signals that start family caregivers off on their journey navigating the care systems. They discuss important signals that family caregivers should be looking out and listening for. They explore some of the problems associated with the signals and talk about the types of sources of advice that are helpful to family caregivers. They say what they want to see done to improve Eldercaring in our societies.
Dr Al Power, MD, is author of ‘Dementia Beyond Drugs: Changing the Culture of Care’. Sarah Rowan is the ‘Heart Whisperer’ who lives the belief of family caregiving. They analyze current medical approaches to dementia and the problems these create, especially for family caregivers. They examine the consequences of the medical use of medications for families and family caregivers. They discuss quality of life issues for the family members with dementia and for family caregivers. They identify the changes they believe are necessary to improve on the current approach to dementia. They explore alternative approaches and the implications for family caregivers whose family members are living at home or in a care facility. They discuss the solutions that are designed from the new approaches, and what these mean for family caregivers. The talk about harnessing Social Capital, of which family caregiving is an important part, as a way implementing the solutions they advocate.
John Mills is the Founder and CEO of eCare Diary.com and Susan Baida is eCareDiary.com’s Co-founder and Chief Marketing Officer. A husband-and-wife team with extensive experience in healthcare policy and technology and in companies responsive to consumer needs, they became family caregivers. They were disappointed by and frustrated with the quality and level of family caregiver support they encountered. They describe how this experience convinced them to set up eCare Diary to improve information support for family caregivers. They talk about the information-related challenges faced by family caregivers and how the e-Care Diary helps them. They discuss caring for health and other family information, and explain why caring for family information is such an important responsibility for family caregivers. They explore what needs to be done to help family caregivers use information technology and the internet to enable them to safely manage their families’ health and family information.
Haley Samuelson and Bill Archer talk about their respective projects, LivingWell@Home and MonAmiCaregiving. Both projects involve technology designed for living safely at home. Haley and Bill talk about living at home as the preferred option for more and more persons who rely on family caregiving. They explain their projects. They recognize that, for family caregivers, safety in the home is a big concern especially when the family member is alone any part of the day or night. They illustrate from their experience the impressive benefits that technology can bring to family caregiving. They explain the importance of privacy. They explore the concerns that family caregivers sometimes have about technology. They discuss the challenges for home safety viewed from the perspective of persons living at home, of their family caregivers, and of the designers of the technology. They explore the challenges of costs of technology and say what they would like to see done to reduce these.
Leann Reynolds is President of Homewatch CareGivers and the driving force in the development of the Homewatch CareGivers University. Colleen Krebs works with Homewatch CareGivers. She’s taken extensive training with the Homewatch CareGivers University. They discuss the links between the training of professional caregivers and the training of family caregivers. From their personal as well as their professional experience, they highlight the training needed for family caregivers who are embarking on family caregiving. They discuss training for professional caregivers in working with family caregivers. They say whether personal experience of being a family caregiver is important for professional family caregivers. They also say whether training for family caregivers helps the professionals who are working with them in providing care to a family member. They discuss the importance of family caregiving and professional support for the healthcare system, and how they see the future.
Dr Dave Travland, a clinical psychologist, leads the Caregiver Survival Institute. Bruce Ritchie is Moderator & CEO of the Fetal Alcohol Disorders Society. They both have powerful experience as family caregivers especially in the care of children with serious challenges. In their work, they support family caregivers facing a wide range of challenges. They discuss the challenges they personally experienced. They describe how their own experiences guide them in providing advice. They talk about advice that’s most useful to family caregivers, and suggest ways for family caregivers to recognize useful advice. They explain why family caregivers who have travelled the caregiving road are so often the best sources of advice for other family caregivers. They analyze the characteristics that help professionals like physicians and psychologists to be most helpful to family caregivers. And they encourage family caregivers to ask the professionals about their own family caregiving experience.
Estée Klar is founder and executive director of The Autism Acceptance Project, www.taaproject.com. She’s the mother of a young autistic son, Adam. Dr Kristina Chew is an Associate Professor of Classics at Saint Peter's College in Jersey City, NJ. She blogs at http://autism.typepad.com about life with her 13-year-old son, Charlie, who's on the moderate-to-severe end of the autism spectrum. Estée and Kristina explain what acceptance means to parents of children with autism, to children and adults with autism and to the communities in which they all live. They describe the positive changes to their own lives that acceptance brought. But they warn that acceptance is not an easy thing to achieve. They tell us about the things that make the sun shine for them. And they describe the action that they would like to see by government and healthcare systems for more and better support for family caregivers, and children and adults with autism.
Leann Reynolds is President of Homewatch CareGivers, sponsors of the Family Caregiver of the Year Award, and hosts of www.familycaregiverblog.com. Larry Ellis is President of SoftWright LLC, of Aurora, Colorado and a former winner of the Family Caregiver of the Year award. They both are united in their experienced-based view that family caregivers aren’t acknowledged, respected and supported to anything like the degree they deserve. In this Episode, ‘Recognizing the Caregiver Crisis: the Family Caregiver of the Year Award’ they explain the purposes of the award, how to nominate someone, and how it reflects their own experiences with family caregiving and as a family caregiver. They share their own stories. They discuss the challenges faced by family caregivers, and their needs. They tell us what they would like to see done to help family caregivers gain more recognition for their services not only to their own family, but to the entire healthcare system.
Kathy Kastner and Nancy Coldham are experts prominent in media and strongly interested in social media. They share their knowledge and experience with family caregivers who’ve travelled the hard road of family caregiving and then turn around to offer a helping hand to family caregivers just starting their journey down the family caregiving road. They give us their impressions of family caregivers and family caregiving. They explain how social media works, and how family caregivers can use it to tell their stories. They offer advice to family caregivers who want to help other family caregivers, via social media. They explain the challenges for family caregivers who want to use social media and suggest the ways to overcome these. They tell us what success is in the use of social media, and how family caregivers can recognize success and benefit from it. They recommend things they want done by governments and healthcare systems to support family caregivers helping family caregivers.
Melanie Cooper, the first legally blind teacher to graduate in Ontario, founded the Connect Learning Centre. Dr Stuart Wittenstein is the superintendent of the California School for the Blind. Melanie explains her experience with vision loss and the challenges it created for her. She talks about the history of Connect Learning Centre, and speaks about the types of vision challenges of the adults attending the center. She discusses the career paths for the trainees when they leave the center. Dr Wittenstein describes the history and work of the California School for the Blind. He talks about the types of vision challenges of the children who attend the school. He explains the teaching methods used in the school’s programs, and discusses the use made of computer technology. He outlines the career paths for the students. Together they explore the financial and other difficulties of meeting the needs of children and adults with vision challenges, and say what they would like to see done.
Jason King has Redford, his Canine Vision Dog Guide. Ian Ashworth is Program Director, Lions Foundation of Canada Dog Guides Training Centre in Oakville, Ontario. Jason describes his experience with his disability and what led him to get Redford. He explains how Redford helps him and those around him with his challenges, and the things that Redford does that make the sun shine for him. Ian describes his work with Dog Guides Canada in training special skills dogs. He explains the types of challenges that the special skills dogs are trained to help with. He discusses the typical questions that he is asked by people who have disability-related challenges, or their families, who are considering a Canine Vision dog. He tells us about the things that make the sun shine for him when he works with a team such as Jerry and Redford. Together, Jason and Redford explore the things that should be done to bring more Canine Vision dogs to help more people with disability related challenges.
Jerry Ford has Lilo, his special skills dog guide. Rhonda Workman is Head Trainer for Hearing Ear Dogs and Special Skills Dogs of Canada, Lions Foundation of Canada. Jerry describes his experience with his disability and what led him to get Lilo. He explains how Lilo helps him and those around him with his challenges, and the things that Lilo does that make the sun shine for him. Rhonda describes her work with Dog Guides Canada in training special skills dogs. She explains the types of challenges that the special skills dogs are trained to help with. She discusses the typical questions that she is asked by people who have disability-related challenges, or their families, who are considering a special skills dog. She tells us about the things that make the sun shine for her when she works with a team such as Jerry and Lilo. Together, Jerry and Lilo explore the things that should be done to bring more special skills dogs to help more people with disability related challenges.
Christine Holloway has Ilene, her hearing ear dog guide. Rhonda Workman is Head Trainer for Hearing Ear Dogs and Special Skills Dogs of Canada, Lions Foundation of Canada. Christine describes her experience with hearing problems and what led her to get Ilene. She explains how Ilene helps her and those around her with her hearing problems, and the things that Ilene does that make the sun shine for her. Rhonda describes her work with Dog Guides Canada in training hearing ear dog guides. She explains the types of hearing problems that the dog guides are trained to help with. She discusses the typical questions that she is asked by people who have hearing problems, or their families, who are considering a hearing ear dog guide. She tells us about the things that make the sun shine for her when she works with a team such as Christine and Ilene. Together, Christine and Ilene explore the things that should be done to bring more hearing ear dogs to help more people with deafness.
Hastings Saunders is a 9-year old boy with epilepsy. His mother, Sandra Saunders, found him a seizure response dog guide. It was trained by the Lions Foundation of Canada Dog Guides Training Centre, where Ian Ashworth is Program Director. Sandra talks about the family’s experience with seizures. She explains what led her to think of a dog guide, and about the particular challenges of seizures that she hoped it would help with. Hastings talks about the dog, Manny, and how it fits into the family. He describes how Manny helps him. Ian discusses the work of Dog Guides Canada in the training of seizures assistance dog guides. He talks about the challenges of seizures that the dog guides are trained to help with. He explains how the dog guides sense a seizure, and describes the response they are trained to provide. All three explore the ways they believe would enable more children who have seizures, their families and their family caregivers to be helped by seizure response dog guides.
David Cravit and Brent Green are writers, analysts and senior executives experienced in advertising, marketing, consulting, speaking and training. They share a special interest in the market place occupied by the generation of seniors increasingly referred to as Boomers. They are well aware of the challenging contradiction that, while the Boomer generation of seniors becomes more and more active, effective and influential, seniors are increasingly perceived by governments as ever-more expensive burdens for healthcare systems. They will explore the possibilities for Boomers to increase their contribution to family caregiving for their parents, siblings, extended families, children, grandchildren, neighbors, community members, friends and others. Is this the way that Boomers can help save the healthcare system from financial exhaustion caused by the health requirements of seniors?
Roxanne Davis is the mom of an autistic son, Mason. Chris Fowler, a professional Dog Guide trainer since 1994, trained the two autism assistance Dog Guides, Zeus and Dublin, that Roxanne Davis talks about. Roxanne and Chris tell us about the experience of autism and the assistance that Dog Guides provide to autistic children, their families and their family caregivers. Chris talks about the Lions Foundation of Canada Dog Guides and its work. Roxanne tells us about her family’s experience with Zeus and Dublin. Chris explains how Dog Guides are trained and how the families are prepared for the extra ‘parents’, as Roxanne calls them. They explain the particular challenges of autism that Dog Guides help with. They discuss the advice that family caregivers need when they are thinking about a Dog Guide for autism. They explore the developments in support systems that they believe would enable more autistic children, families and family caregivers to be helped by Dog Guides.
Dr Sandy Buchman is an experienced family physician specializing in home-based, end-of-life care. Don Fenn is Publisher of the Family Caregiver Newsmagazine, which he founded after 11 years as family caregiver for his parents with Alzheimer’s disease and cancer. Dr Buchman describes his medical practice. Mr Fenn highlights his experience as family caregiver. They talk about the discussion within a family that occurs when it is confronted with the option of the family member’s dying at home. They point to important matters that should be considered by the family. They explore the organization of end-of-life care. They examine the ways in which the team work between the family caregiver and the family physician can be most successful. They talk openly about the stresses and the peace that home home-based, end-of-life care brings. They say what additional support and help they would like to see for family caregivers when a loved one chooses to die at home.
David Cameron is President & CEO of the ALS Society of Canada. Rodney Harris is the Chief Executive Officer of the Motor Neurone Disease Association of Victoria, Australia. They describe their organizations. They respond to points from Episode 3, Jan 26, 2010, ‘Family Caregiving and Lou Gehrig’s Disease’, raised by Colleen Smailes, whose husband died from Lou Gehrig’s disease in 2009, and Melanie York, who was diagnosed with it in 2008. The points include support for family caregivers in assisting family members with the disease in their shift from independence to dependence, from communication to speechlessness, and from privacy to relentless exposure; training for family caregivers in recognizing, understanding and providing for the needs of the person; support for family caregivers in advocating for the person, and in recognizing and managing their own needs; and ways to improve recognition of the role of caregivers and enhance understanding of challenges of the disease.
Dr Deborah Peel is a practicing physician and founder of the US organization, Patient Privacy Rights. Ms Micheal Vonn is a lawyer and the Policy Director of the British Columbia Civil Liberties Association. Both are deeply involved in pressing for better protection of healthcare privacy in the increasingly electronic world of healthcare. They highlight the services that their organizations provide and highlight those most likely to be helpful to family caregivers, in all types of families, who provide care for a family member. They explain the types of risks that loss of healthcare privacy may create for family caregivers and the family members they care for, and they way these risks can undermine relationships within the family. They discuss the effectiveness of privacy laws in the protection of privacy for family caregivers and family members. They say what changes they would like to see for improving healthcare privacy for family caregivers and the family members they care for.
Betty Cornelius and Sherry Johnson are kinship caregivers. Kinship caregivers are often grandparents, but they may be aunts, uncles, cousins, or others who are caring for children or youths in need of care or protection. Kinship caregiving is the full-time nurturing and protection of a child who is the caregiver’s kin but not a son or daughter. Betty and Sherry share with us their stories as grandparents as kinship caregivers. They talk about support groups they founded or have experience with. They identify the children’s health conditions that so often create the call for kinship caregiving. Drawing on their own experience, they pinpoint the challenges faced by kinship caregivers, and say what makes the challenges so difficult. They talk about the challenges to the health, quality of life and of kinship caregivers, how they personally deal with these, and the help and support they require. They offer advice for people who are just starting down the road they both travelled.
Laura Rutherford and Meredith Pizzi are linked by music therapy. Laura is the mother of Kate, who has multiple developmental and physical disabilities and who inspired Kate’s Voice, a non-profit group that grants music therapy programs to special-needs classrooms. Meredith, a professional music therapist, is the Founder and Director of Roman Music Therapy Services, a music therapy agency which serves children and adults with social, emotional, cognitive, behavioral, physical, and educational needs.
They talk about their work in and for music therapy and how they came to be involved. They explain the ways in which music therapy helps children with special needs. They describe their success stories. They offer advice to family caregivers who are wondering if music therapy will help their special-needs children, and to family caregivers just starting down the road travelled by Laura, Kate and the family. And then they say how they would like to see music therapy programs develop.
Ruth Drew and Joan O’Callaghan are both highly qualified professionals in their fields. Both have experience of Alzheimer’s disease. Ruth is Director of Client and Information Services for the Alzheimer’s Association, where she works with people with Alzheimer’s disease and with their family members. Joan is a faculty member at the Ontario Institute for Studies in Education at the University of Toronto. Her experience of Alzheimer’s disease is as a family caregiver at home for her late mother, who suffered from it.
Ruth and Joan talk about their experiences from the perspectives of a professional providing help to family caregivers and of a person who became a family caregiver. They discuss the challenges. They explore ways for coping. They offer advice for who people who are just starting down the path of family caregiving. And they explain what they want to see done to bring more help for family caregivers caring at home for loved ones with Alzheimer’s disease, a heavy burden.
Teresa Kellerman and Bruce Ritchie are parents each with a child with fetal alcohol syndrome. This is caused by alcohol consumed by the child’s mother during pregnancy. Alcohol consumed during pregnancy is the leading cause of birth defects and childhood disability in North America. Its most critical effects are behavioral. These are the impulsiveness, the poor judgment, and the social immaturity that makes the child so vulnerable in school, community, and life. The child's emotional and social developmental age is about half the chronological age. Even as the child grows into adulthood his or her functioning may be at the level of a 5 or 6 year old. Frustrated by the inability to control his or her own behavior, the child may become angry or depressed…and may get into trouble again and again, at risk of yet more problems, such as getting arrested, addicted, evicted, or fired, or worse. The challenges for family caregivers, which are huge, are the topic for Teresa and Bruce.
Dan Thompson and Dr. JR Harding are successful professionals. Both have significant disabilities. For them, balancing health, caregiving and career is their continuing challenge. They describe how they overcome it, day by day, hour by hour. They explain what a significant disability is and what it means to them personally. They talk about their professional lives, how they work, and how their work helps others with significant disabilities.
What got them started in their careers? What things gave them the greatest challenges? What things now give them the most job satifaction, and why these generate so much satisfaction? What advice do they have for people with significant disabilities who want to have their own businesses?
They talk about caregiving they depend on. How it is organized and by whom: who provides it. And then they share with us their vision for the future for persons with significant disabilities who want to succeed in balancing health, caregiving and career.
Mark Rutherford of Philips Healthcare and Bill Archer of MonAmi Caregiving Ltd talk about their organizations’ missions, products and services that serve family caregivers. They tell us what they see as the main benefits that their products and services offer to family caregivers.
They discuss the family caregivers’ challenges that their products and services help meet. They describe the features of these products and services that they particularly emphasize to family caregivers. They say how their products and services help ease the various types of burdens on family caregivers.
They give us their vision for the technology of tomorrow that does even more to support family caregivers. Then they explore the question of who pays for and who benefits from the new technology.
Finally, they share with us the things they would do if they were appointed by their governments to oversee the development of services to quickly expand the role of technology for family caregiving.
Physician Dr Wendy Graham and psychologist Dr David Travland discuss burnout in family caregivers.
Burnout is widely known to be a risk which overtakes too many family caregivers as they grapple with the day-in, day-out challenges of family caregiving. The two Guests explain what burnout is, what causes it, and what its consequences are.
They talk about the things that lead to burnout that they see in their professional practices. The sacrifices by and stresses on family caregivers—on their mental and physical health, on their quality of life, on their finances.
They explore what is done to help family caregivers affected by burnout. How are they supported? How are they treated? How are they helped in preventing it? What should happen when the time comes that the condition of the person they are caring for is too much of a challenge?
Then they say what they think needs to be done to develop more and better services to prevent and treat burnout for family caregivers.
Michael Power is a Toronto-based lawyer who advises public and private sector clients on privacy and information risk management issues. Tom Warren is a former police officer with the information security and data forensics company, Net-Patrol, which he founded. In ‘Security for Family Caregivers and their Families’ they discuss fraud, robbery, violence and other forms of harm resulting from criminal activity in which people’s private information is involved. They explain the ways the bad guys operate. They point out the main methods of protection and prevention that are of interest to family caregivers. They analyze the types of advice that family caregivers may need, and suggest where they should go for help and advice if they are worried. They debate the ways that technology can help family caregivers. They exchange opinions on what’s to be done by government to help family caregivers protect their families and the family members they are caring for.
In the episode, ‘Pharmacists and Family Caregivers’, Bill Brown, a pharmacist with extensive experience in the business of pharmacy and healthcare describes the new world of pharmacy and what this means for family caregivers.
Family caregivers often face challenges in helping their family members with their medications. How do pharmacists help them and their family members?
But Pharmacists are providing more and more healthcare services beyond those of filling prescriptions and advising on medications. What are these services and what needs of family caregivers and their family members do they currently meet? What are the challenges that pharmacists face in providing for them? What have pharmacist learned from their support of family caregivers?
What does the future hold for family caregivers as pharmacists expand their services?
Ramesh Srinivasan and Robert Ridge are, respectively, Senior Vice President of the US MedicAlert Foundation and President and CEO of the Canadian MedicAlert Foundation. In MedicAlert and Family Caregiving, they explain the services that MedicAlert provides and how these help family caregivers as well as the persons who receive care from family caregivers. They discuss the types of medical and personal emergencies that MedicAlert focuses on, the way these occur, and the challenges these bring to family caregivers. Of these challenges, they talk about those that arise in connection with medical conditions for which there is no cure and which progressively undermine the health and wellbeing of persons with these conditions. They explain how MedicAlert services help with these types of challenges. Drawing on their personal experience, they say what changes they would implement if they were appointed by their governments to lead the development of family caregiving in their countries.
Dr Joan Lesmond and Donna Schempp are both with organizations providing care to immigrant families and their family caregivers. The organizations are, respectively, Saint Elizabeth Health Care, in Toronto, and the Family Caregiver Alliance, in San Francisco. From their experience, Dr Lesmond and Ms Schempp will talk about the challenges faced by family caregivers in immigrant families.
All family caregivers face challenges because family caregiving is demanding work. Dr Lesmond and Ms Schempp will discuss the special challenges to family caregivers in immigrant families. They’ll explain the things that make the challenges special. They’ll describe how immigrant family caregivers deal with these special challenges. They’ll say what types of help immigrant family caregivers need and receive to help them with these special challenges.
And they will point to changes they think are needed in the way immigrant family caregivers are helped.
Dr Catherine Ward-Griffin is a Professor of the Arthur Labatt Family School of Nursing at the University of Western Ontario. Judith Phillips is Professor of Gerontology and Social Work in the Centre for Innovative Ageing at Swansea University, Wales. They discuss family caregiving, in which both of them have done extensive research, when the family caregiver is also a woman, often a nurse, employed in healthcare. They call this double-duty caregiving.
They describe the types of care double-duty caregivers provide, who they provide it to, what it involves, and what challenges it creates for the double-duty family caregivers.
They discuss the challenges to for the double-duty caregivers themselves--to their health, to their quality of life, to their finances: what support is needed and given?
They examine the impact on the healthcare system of double-duty caregiving, and tell us about improvements they want in government policy for better support for double-duty caregivers.
Paul Hogan and Sharon Galway are with Home Instead Senior Care, the world’s largest senior-care business of its kind.
Paul is co-founder of the Home Instead organization, headquartered in Omaha, Nebraska. He’s the author of the recent book, Stages of Senior Care, published by McGraw-Hill. Sharon owns the Home Instead Senior Care office in North Toronto, Ontario, where she fulfills her personal commitment to seniors’ independence and successful aging at home.
Paul explains the stages of senior care, and how these relate to family caregivers. Sharon talks about the services she provides and how these relate to the challenges faced by family caregivers. They talk together about these challenges caregivers, identify the most challenging, and speak about supporting family caregivers. They explore the benefits of seniors staying home and independent; and the costs, too.
And they talk about the things they would like to see happen to strengthen services for family caregivers.
The healthcare systems of the US and Canada rely on the unpaid help of family caregivers. Family caregivers are the people who provide care to family members suffering health challenges.
AARP and its Canadian counterpart, CARP, advocate for US Boomers and Canadian Zoomers, the very people who are the family caregivers.
Many family caregivers provide care for aging parents with long-term and, often, incurable medical conditions. Other family caregivers provide care to their children with special needs. Either way, the family caregiving is intense, demanding and, all too often, a stress and strain on the health of the family caregiver. It can be financially burdensome, too.
AARP’s Senior Vice President, Dr Susan Reinhard, and CARP’s Vice President Advocacy, lawyer Susan Eng, discuss the ways in which their organizations support family caregivers, the things for which they advocate on behalf of family caregivers, and the changes they want to see in the healthcare systems.
Melanie York, who has Lou Gehrig’s disease, and Colleen Smailes, whose husband Clayton died from it in 2009, share their experience with and insights into family caregiving for this devastating, incurable disease.
Also called ALS and motor neurone disease, Lou Gehrig’s disease attacks the brain and nervous system. It affects around 33,000 people in North America.
Progressing in phases, it destroys the brain’s ability to start and control movements. It causes loss of strength and the ability to move the arms, legs, and body. It brings failure of the muscles in the diaphragm and chest and therefore loss of the ability to breathe without ventilation support. It commonly results in death from respiratory failure within 3 to 5 years though 10 percent of persons survive for 10 or more years.
But it never removes the ability to see, smell, taste, or hear, or to recognize touch. Nor does it usually impair thinking or other mental abilities.
Dementia is the name for various conditions that cause loss of memory, judgment and reasoning, and changes in mood, behaviour and communication abilities. By far the most common form of dementia is Alzheimer’s disease.
Alzheimer’s disease can affect adult men and women of all ages though it mostly occurs in persons over the age of 65. It’s a disease of the elderly that affects 8 percent of persons over the age of 65 years, and 35 percent of seniors aged 85 years and over.
Family caregivers notice that their family member with Alzheimer’s disease is experiencing gradual onset and often unpredictable but continuing decline of memory, changes in judgment and reasoning, and loss of ability to perform familiar tasks.
Dr John Sloan and Professional Outreach counselor, Katie Griffiths, share their experience and understanding of the mental, emotional and physical challenges for family caregivers caring for family members with Alzheimer’s disease and or other types of dementia.
Two mothers of children with severely disabling, incurable medical conditions share with us their experiences as family caregivers. One of them recalls her memories of her child, who died three years ago. The other describes the changes in her child’s condition, and how these affect her family caregiving.
The host, a doctor, describes the medical impact of the conditions.
The mothers show us what it really means to be a family caregiver, the person who provides care when everyone else has gone home. They tell us about the things that sustain them in their family caregiving. They talk about the effects on the family as a whole, including the brothers or sisters of the child. And the happiness they all experience.
They explain the things that enable them to cope. The advice they offer family caregivers caring for children with grievous, incurable conditions.
They tell us what changes they would introduce if the government put them both in charge of family caregiver support.