Dementia Dialogue: Recent Episodes
dementiadialogue
Check out www.dementiadialogue.ca Our podcasts feature people with dementia, their care/life partners, and supporters sharing experiences. They demonstrate their capacity to live fully and enable peer listeners to understand and gain insight and strengthen their adaptive skills. Episodes also enhance understanding within the broader community of what it means to live with dementia.
Dans cet épisode, Dre Nouha Ben Gaied – Directrice en recherche et développement et qualité des services à la Fédération québécoise des Sociétés Alzheimer – nous parle du projet Canada proche allié Alzheimer.
Ce projet, qui a pour but de favoriser l’inclusion des personnes atteintes de troubles neurocognitifs dans nos communautés, est un partenariat entre les Sociétés Alzheimer du Canada, de la Colombie-Britannique, de la Saskatchewan et de l’Ontario.
Cliquez sur le lien ci-dessous, si vous souhaitez en apprendre plus sur le projet Canada proche allié Alzheimer!
Canada proche allié Alzheimer
(https://alzheimer.ca/fr/agissez/devenez-allie-des-personnes-atteintes-dun-trouble-neurocognitif/canada-proche-allie-alzheimer)
In part 1 of a two-part series, Lisa Loiselle speaks to Alison Phinney, PhD RN, and Lynn Jackson, RN, a person with lived experience of dementia. They work on the Building Capacity Project, a partnership between researchers at the University of British Columbia and Lakehead University, and the Westside Seniors Hub in Vancouver and the North West Dementia Working Group in Thunder Bay.
Alison is from New Brunswick and now lives in British Columbia and has been doing research together with people with dementia for 30 years. As a nurse, she became very curious about what their experience was like because it was very hard for them to tell her. That curiosity and commitment have stayed with her.
Lynn grew up in Vancouver but now lives in Sydney, BC. Twenty-two years ago, she was diagnosed with Frontal temporal dementia (FTD). Since then, she has been engaged in advocacy work with people living with early stages of dementia, and is as busy as ever!
Links to include on the website:
https://www.buildingcapacityproject.com/
https://www.flippingstigma.com/
In this second episode on biomarkers, Ann Bil, a woman living with dementia, and Kristi Winjsma, her daughter, discuss why they enrolled in the IMPACT-AD, their experience, and how they used the results from the investigation. Khushbu Patel, a research associate of Dr. Mari DeMarco, the principal investigator, talks about some other participants' experiences and resources available at www.impactad.org/resources.Kristi mentions the help provided through First Link, a service of the Alzheimer Society of British Columbia and other Alzheimer Societies in Canada.
The analysis offered by Dr. DeMarco’s lab at St.Paul’s Hospital in Vancouver is available in Canada to consulting physicians, e.g., neurologists, geriatricians, and psychiatrists, who have patients with symptoms of dementia and may benefit from the test. It is not a screening test for people without symptoms.
A presentation by Dr. Demarco on what a biomarker is at https://www.impactad.org/post/2020-alzheimer-update.
For additional resources, please visit the Resource page on the Dementia Dialogue website (https://www.dementiadialogue.ca/resources-1) and choose Biomarkers from the left navigation panel.
This episode is sponsored by Roche Canada.
Dr. Mari DeMarco, Ph.D., is a researcher at the University of British Columbia concerned with how the diagnoses of neurodegenerative diseases can be improved by discovering and using biomarkers. Led a study on biomarkers. Her lab aims to create better tools for the timely diagnosis of Alzheimer's disease, frontotemporal degeneration, and related disorders and make these tools easily accessible to those that need them.
Dr. DeMarco talks about the use of the amyloid beta peptide and tau biomarkers in dementia and specifically Alzheimer's Disease and the results of the one arm of the Impact-AD study on clinical management. These two biomarkers are found in cerebral spinal fluid. They offer patients and healthcare providers a definitive diagnosis of Alzheimer's Disease, something that previously eluded many individuals. The analysis also helps in identifying frontotemporal dementia. Insert poster link here
The analysis offered by Dr. DeMarco's lab at St. Paul's Hospital in Vancouver is available in Canada to consulting physicians, i.e., neurologists, geriatricians, and psychiatrists, who think that a patient who has symptoms of dementia would benefit from the test. It is not a screening test for people without symptoms.
Additional Information:
Information about the study can be found: at https://www.impactad.org/resources.
A presentation by Dr. Demarco on what a biomarker is at https://www.impactad.org/post/2020-alzheimer-update.
For additional resources, please visit the Resource page on the Dementia Dialogue website (https://www.dementiadialogue.ca/resources-1) and choose Biomarkers from the left navigation panel.
Roche Canada sponsors this episode.
Nos invitées pour ce balado sont Hélène Carbonneau, professeure au Département d’études en loisir, culture et tourisme à l’Université du Québec à Trois-Rivières et Sandra Harrisson, professeure agrégée à l’École des sciences infirmières de la Faculté des sciences de la santé de l’Université d’Ottawa.
Hélène et Sandra collaborent depuis plusieurs années maintenant à l’élaboration d’un cadre plus humain pour les services et les soins des personnes atteintes de troubles de mémoire. Ce cadre, qu’elles appellent l’approche par le plaisir©, optimise la qualité de vie des clients en misant sur leur bien-être psychologique. Dans cet entretien, Hélène et Sandra nous parlent de cette nouvelle approche et de ses impacts positifs sur les clients, les familles, les proches aidants et le personnel soignant. Pour plus d’information sur cette approche, vous pouvez communiquer directement avec Hélène et Sandra.Si vous êtes un proche aidant ou un organisme communautaire, veuillez contacter Hélène par courriel à : Helene.Carbonneau@uqtr.caSi vous êtes un organisme du réseau de la santé, veuillez contacter Sandra par courriel à : SHARRISS@uottawa.ca
Voir Saison 2 Episode 1 - Biographies et photos.docx
This is the second episode about the Building Capacity Project (Part 1 is episode #51), a joint initiative of UBC and Lakehead University. Alison Phinney and Granville Johnson focus on a Toolkit the project hasdeveloped to promote the inclusion of people with dementia in community programs. It is meant to help community leaders and program participants to understand how dementia is experienced and, thus, normalize how they can be included in mainstream opportunities.
Link to the toolkit: https://www.flippingstigma.com/
In this episode, Pat Shanahan speaks with Maggie Perquin. Maggie retired early from teaching to become the carer for her wife Ruth who have been together for 27 years, married for 15 of those and between them they have 15 grandchildren. Ruth, also a retired teacher, had been struggling with cognitive issues for about 8 years when she was finally diagnosed with vascular dementia in 2018.
Following the diagnosis, Ruth and Maggie connected with the Alzheimer Society Southwestern Partners. While they were well received as a same-sex couple, they realized they were the only out participants in their group. Maggie approached the Alzheimer Society to consider starting a group to support 2SLGBTQ clients and caregivers. The first two sessions of the group had carers of 16 Alzheimer clients.
Maggie has invited any listeners who might be interested in contacting her by email at l nanastable675@gmail.com
Resources:
Ruth and Maggie share their story in this video.
https://on.alz.to/site/SPageNavigator/ASLM/2021/Cabin_Fever/ASLM_Cabin_Fever_2021.html;jsessionid=00000000.app20058b?NONCE_TOKEN=F25504F441FB0A8DA0A27C9905683678
Dementia as an Animal
https://www.youtube.com/watch?v=ynAXxAO4pws
Alzheimer Society Southwest Partners
https://alzswp.ca/
Ontario Alzheimer Society
https://alzheimer.ca/on/en
National Institute on Aging /Egale Canada
https://2slgbtqi-aging.ca/tag/dementia/
In this final episode of our Young Onset Dementia series, guest host Jillian McConnell speaks with Dr. Mario Masellis, Associate scientist and Clinician-scientist with the Hurvitz Brain Sciences Research Program, Sunnybrook Research Institute & Sunnybrook Health Sciences Centre; Assistant professor, neurology, department of medicine, University of Toronto and Research scientist, Centre for Addiction and Mental Health. Jillian and Dr. Masellis discuss what genetic testing looks like for someone who has a close family relative that is living with Young Onset dementia, how testing for Young onset dementia is different from other diseases, who is a good candidate for genetic testing, and the implications of deciding to test or decide not to test for Young Onset dementia.
Resources:
- Genetic Testing and Alzheimer’s Disease - https://alzheimer.ca/en/about-dementia/what-alzheimers-disease/genetic-testing-alzheimers-disease
- Alzheimer's genes: Are you at risk? - https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers-genes/art-20046552
- A Few Facts about Genetic Testing and Young Onset Dementia - https://alzheimer.ca/en/about-dementia/other-types-dementia/young-onset-dementia/genetics
- Alzheimer Society of Canada, Young Onset Dementia - https://alzheimer.ca/en/about-dementia/other-types-dementia/young-onset-dementia
- brainXchange, Young Onset Dementia Resource Page - https://brainxchange.ca/Public/Resource-Centre-Topics-A-to-Z/Young-Onset-Dementia
Après trois mois de relâche, nous sommes enchantés de vous revenir avec notre série de balado Les troubles neuro-cognitifs : parlons-en! Cet automne, nous vous-présenterons une série de balados mettant en vedette des francophones de l’Ouest canadien. Dans le premier épisode de la série, l’animatrice Ingrid Gagnon s’entretien avec Gioia Sallustio à propos de résilience, de la proche aidance, de l’importance d’avoir accès à des ressources dans sa langue maternelle et de son attachement pour la communauté franco-albertaine.
After three months off, we are delighted to be back with our podcast series Neuro-cognitive disorders: let's talk about it! This fall, we will present a series of podcasts featuring Francophones from Western Canada. In the first episode of the series, host Ingrid Gagnon talks with Gioia Sallustio about resilience, close support, the importance of having access to resources in your mother tongue and her attachment to Franco-Albertan community.
Although Grenville Johnson is living with dementia; he remains part of the community. Grenville is a website designer, an artist, a musician (jimbe), a teacher (school and music), a community dignitary, and performs and speaks at community events. After he was diagnosed with dementia, he continued his community work introduced by the BC Alzheimer society. He was introduced to the Dementia Action Group and has become an advocate for himself and others living with dementia (creating a toolkit and dementia celebrate life t-shirt). a program about reducing stigma. He is currently in a band called “The day will come project,” and they have written the lyrics and music for their debut album to be recorded in June 2022. The album is about his life living with dementia. He is also writing his autobiographical, fictional novel, with the first volume finished in June to coincide with the release of his album. Through his work as an advocate, he has found his community. He works towards educating the public about dementia but also supporting his peers.
Alison Phinney speaks about her work as a nurse and over the years working with dementia and how that has led her to create a new community-based program called Building Capacity Project. This is a project that is a partnership between Vancouver and Thunder Bay. The purpose is to discover the assets that the community has and develop that would support people with dementia in a better way.
In episode 1 Grenville and Alison speak about how they each got involved in community-based work and speak extensively about stigma and fear and how they are working to make change. Grenville talk in detail about one of two projects – Creating a t-shirt that has been distributed to change people’s perspective of what living with dementia is about.
In the second episode, Alison and Grenville describe a Toolkit that came out of a collaboration between community and people living with the experience of dementia and is meant to help others understand their experiences in the hopes that engagement and inclusion of those with dementia will become normalized.
Alison's Bio
Granville's Poem
In this episode of our Young Onset Dementia series, guest host Kathy Hickman of the brainXchange and Alzheimer Society of Ontario sits down with her niece Rachel Broderick of Owen Sound, Ontario, whose Mother and Grandmother both developed and died in their 40s of a rare form of Alzheimer’s Disease. (Familial) caused by a genetic mutation. Rachel, along with her brother (both teens at the time), cared for her Mom, Chantal, who was a single mother. The story of how she bravely faced this experience during her formative years and how it influenced the now 21-year-old woman she has become is truly inspiring. Rachel candidly shares with Kathy why she had made the difficult decision to have genetic testing done to find out whether she has the same genetic mutation and will develop Young Onset Dementia as her Mother and her Mother before she did.
Resources
- Genetic Testing and Alzheimer’s Disease - https://alzheimer.ca/en/about-dementia/what-alzheimers-disease/genetic-testing-alzheimers-disease
- A Few Facts about Genetic Testing and Young Onset Dementia - https://alzheimer.ca/en/about-dementia/other-types-dementia/young-onset-dementia/genetics
- What Teens Need to Know if a Parent has Young Onset Dementia -https://alzheimer.ca/en/about-dementia/other-types-dementia/young-onset-dementia/teens
- Young Caregivers Association - https://youngcaregivers.ca/about/
- Young Carers Project, Research Institute for Aging, University of Waterloo - https://the-ria.ca/resources/young-carers-project/
- Alzheimer Society of Canada, Young Onset Dementia - https://alzheimer.ca/en/about-dementia/other-types-dementia/young-onset-dementia
- brainXchange, Young Onset Dementia Resource Page - https://brainxchange.ca/Public/Resource-Centre-Topics-A-to-Z/Young-Onset-Dementia
Lisa Loiselle speaks with Brenda Hounam and Colleen Whyte about friendship and dementia. Brenda was diagnosed with early onset dementia at age 53. She met Lisa in 2002 when they, and others planned the first ever conference by and for people living with dementia – A Changing Melody.
Brenda and Lisa continue to work on many dementia advocacy initiatives and have formed a deep and meaningful relationship. The conversation includes the loss of friendships after a diagnosis, how participants in the study defined friends vs. acquaintances, leisure and how that helps people maintain friendships, how trust plays into relationships, and more.
Colleen Whyte is at Brock University. She and her colleagues, Darla Fortune (Concordia) and Rebecca Genoe (Regina) have studied friendship and dementia, published a number of articles, created a website and video vignettes. Brenda and Lisa have been working with them on a set of conversation tools.
Resources:
https://dementiaandfriendship.ca/
https://www.cbc.ca/listen/live-radio/1-66-the-morning-edition-sask/clip/15928672-university-regina-researcher-studies-maintaining-friendships-dementia-diagnosis
Our summer reprises focus on the theme of advocacy at the system, community service and individual level. In this episode originally released in May 2018, Louise Milligan describes how her husband Gord was diagnosed with dementia while still teaching and raising two daughters. Louise speaks eloquently about the challenges their family faced and how she was able to use community resources to help.
Our summer reprises focus on the theme of advocacy at the system, community service and individual level. This first episode released in May 2020 outlines the connection between human rights and dementia, with particular attention to the impact of COVID-19 on long-term care. Mario is a dementia activist who is a co-creator of a Canadian Charter of Rights for Canadians with Dementia for the Alzheimer Society of Canada. Laura Tamblyn-Watts of CanAge is a lawyer and leading advocate for older people and Margaret Gillis leads the International Longevity Centre, Ottawa and is working to have Canada adopt the UN Convention on the Rights of Older Persons. Each gives their own advice on what listeners can do to promote human rights for people with dementia.
John and Cindy McCaffrey's motto is “Have a good day, every day”. In this episode of our Young Onset Dementia series, guest host, Kathy Hickman of the brainXchange and Alzheimer Society of Ontario talks with them about their experiences of living with and caring for someone with young-onset dementia, how they have built a sense of community and continue to maintain a positive attitude by living in the moment.
John and Cindy discuss how they took action when they couldn’t find the “right” supports for someone living with young-onset dementia by creating a program called YouQuest. YouQuest focuses on providing intentional days for people living with young onset dementia based on providing real-life experiences, all guided by its participants.
Resources
YouQuest - https://youquest.ca/
Online Support Group for care partners of people with young-onset Dementia – Contact cindy@youquest.ca
Frontotemporal Dementia (FTD) Durham Support Group - https://m.facebook.com/groups/221301621683010
The Association for Frontotemporal Dementia - https://www.theaftd.org
brainXchange, Frontotemporal Dementia Resource Page - https://brainxchange.ca/Public/Resource-Centre-Topics-A-to-Z/Dementias-Rare-forms-of-/Frontotemporal-Dementia
Alzheimer Society of Canada, Young Onset Dementia - https://alzheimer.ca/en/about-dementia/other-types-dementia/young-onset-dementia
brainXchange, Young Onset Dementia Resource Page - https://brainxchange.ca/Public/Resource-Centre-Topics-A-to-Z/Young-Onset-Dementia
Nos invités pour cet épisode sont Véronique Legault et Pierre Roisné, respectivement Directrice générale du Regroupement des ainés de la Nouvelle-Écosse et Directeur général du Réseau santé Nouvelle-Écosse.
Véronique et Pierre collaborent depuis quelques années sur Villages culturels, un projet dont le but principal est d’identifier des méthodes, des approches et des activités culturelles qui pourraient être utilisées dans les centres de soins de longue durée en Nouvelle-Écosse afin de créer une atmosphère culturelle acadienne et francophone pour les résidents.
Ensemble nous avons parlé de la réalité de la communauté francophone et acadienne en Nouvelle-Écosse, des grands objectifs de leur projet et de leurs espoirs aussi pour les villages culturels.
Nous avons aussi demandé à Véronique de nous parler un peu de deux initiatives très intéressantes du Regroupement des ainés : lettres entre générations et cœur d’artiste!
Si vous aimez la musique, nous vous invitons à découvrir la chaine YouTube du Regroupement des ainés de la Nouvelle-Écosse.
Nous vous invitons également à visiter les sites Web du Regroupement des ainés de la Nouvelle-Écosse et du Réseau santé Nouvelle-Écosse pour plus d’information sur leurs services et ressources.
Lisa Loiselle speaks with filmmaker Chris Wynn who filmed his father’s struggles with Alzheimer’s in a documentary “Forgetful Not Forgotten” and a 2nd feature documentary about young caregivers called “Much Too Young”.
Chris and Lisa speak candidly about how dementia is portrayed in TV and film, how it affects perceptions of Alzheimer's disease amongst the general population, and nurtures stigma. Chris also speaks about his own experience with his father’s illness and how it changed his life and inspired him to create his own documentary films.
Resources:
Forgetful not forgotten : http://livingwithalz.org/user_submitted_film/forgetful-not-forgotten/
Much too young : https://www.tvo.org/video/documentaries/much-too-young
Article: A slew of new movies including "Falling," "Supernova" and "The Father" try to put audiences in the shoes of someone suffering from dementia.: https://www.usatoday.com/story/entertainment/movies/2021/02/05/viggo-mortensen-falling-supernova-the-father-depict-dementia-realistically/4384359001/
The Toronto Recollectiv provided the music in this episode. Recollectiv helps people with memory impairments gain a new social network, rediscover a sense of accomplishment and find joy through music-making. Resources are available to help form groups in other communities. Information is found https://www.recollectiv.ca/
A short video of how Recollectiv contributes to a member's quality of life "Leonard's Story" can be found at https://www.youtube.com/watch?v=TFDK2Kfr9HA
Notre invitée pour ce troisième épisode est Claire Giallonardo. Claire est native de Timmins, dans le nord de l’Ontario et habite maintenant dans la région de Peel. En 2014, alors qu’elle avait à peine 55 ans, Claire a reçu un diagnostic de Parkinson.
À la suite de ce diagnostic, Claire a dû repenser à son avenir et faire d’autres projets de vie; une période très difficile qu’elle qualifie de « traumatisante ». En contrepartie, cette période lui a aussi permis d’élargir son cercle social, de s’impliquer auprès de sa communauté et de renouer avec son amour des arts.
Claire et moi avons parlé de tout ça et bien plus encore dans le balado qui suit !
Cliquez sur ce lien pour lire le poème de Claire qui s’intitule « Faux cils, quelques-unes des toiles de Claire, et la biographie et photo de Claire https://www.dementiadialogue.ca/podcast-3-biographies
Jill Czuczman a care partner to her husband David, living with Frontotemporal Dementia talks about some of the unique challenges associated with young-onset dementia from the long road to getting a diagnosis, to leaving the workforce early, the lack of understanding and stigma, to the struggles to find supports that meet the unique needs of those living with or caring for someone with dementia in mid-life. Facing these challenges head-on, Jill shares how she and David have made the choice to find the positive every day and the steps they have taken to live well with dementia, including getting involved in research and becoming advocates.
Resources
Frontotemporal Dementia (FTD) Durham Support Group - https://m.facebook.com/groups/221301621683010
The Association for Frontotemporal Dementia - https://www.theaftd.org
brainXchange, Frontotemporal Dementia Resource Page - https://brainxchange.ca/Public/Resource-Centre-Topics-A-to-Z/Dementias-Rare-forms-of-/Frontotemporal-Dementia
Alzheimer Society of Canada, Young Onset Dementia - https://alzheimer.ca/en/about-dementia/other-types-dementia/young-onset-dementia
brainXchange, Young Onset Dementia Resource Page - https://brainxchange.ca/Public/Resource-Centre-Topics-A-to-Z/Young-Onset-Dementia
A Toronto-based mental health clinician and artist specializing in aging, older age, and dementia, Aynsley Moorhouse elaborates on how the fundamental principles of theatre improv, such as saying “yes, and”, are also central to caregiving and communicating with people living with dementia. Improv teaches care partners about living in the now and supporting one’s partner by making them “look good”. She now works with care partners at the Reitman Centre using the principles of improv to connect with the people living with dementia they are supporting.
Resources:
Website: www.dementiacarers.ca
https://www.brainandlife.org/articles/how-improvisational-techniques-help-engage-dementia-patients/
https://www.psychologytoday.com/ca/blog/play-your-way-sane/202004/improvisations-benefits-people-dementia
Marie-Reine et André sont tous deux natifs du Caire, en Égypte. Ils ont émigré au Canada en 1970 et habitent dans la région d’Ottawa. C’est là qu’ils ont fait leur carrière et élevé leur famille.
Il y a environ trois ans, André a été diagnostiqué avec la maladie à corps de Lewy, une forme de trouble neurocognitif qui partage de nombreuses similitudes avec la maladie de Parkinson.
Lors de notre rencontre, nous avons parlé du diagnostic d’André, de l’impact de ce trouble neurocognitif sur leur vie et des efforts qu’ils font, chaque jour, pour rester actifs physiquement et intellectuellement, et profiter du moment présent.
Jillian McConnell, our guest host, speaks with the Dineen children: Justin, Rebecca, and Peter who were just 12, 10, and 8 at the time of their mom’s diagnosis (9 years ago), about their experiences as younger children learning about their mother’s bvFTD diagnosis and now as teenagers / young adults. They discuss the unique challenges they faced and offer perspectives and strategies that continue to help them as they navigate their mother’s diagnosis and their relationship with her.
Part 1 is a conversation with Matt Dineen, their father.
For more information:
- Association for Frontotemporal degeneration: https://www.theaftd.org/
- AFTD support groups in Canada: https://www.theaftd.org/get-involved/in-your-state/canada/
- The Dementia Society of Ottawa and Renfrew County: https://dementiahelp.ca/
- ASO: https://alzheimer.ca/on/en
- brainXchange: https://brainxchange.ca/public/home
Our Young Onset series begins with a conversation between Matt Dineen, a father of three and husband from Ottawa, Ontario and Jillian McConnell, guest host and Knowledge Mobilization lead with brainXchange. Nine years ago, Matt's wife Lisa was diagnosed with Behavioural variant Fronto-temporal dementia (bvFTD) at the age of 43.
Matt and Jillian discuss what his experience has been like including: how Lisa was diagnosed, the challenges surrounding a diagnosis and symptoms at such an early age, how it impacted him, Lisa and their children (who were ages 12, 10 and 8 at the time) and what strategies and resources Matt found most helpful early on in Lisa's diagnosis and now, years later. For more information:
- Association for Fronto-temporal degeneration: https://www.theaftd.org/
- AFTD support groups in Canada: https://www.theaftd.org/get-involved/in-your- state/canada/
- The Dementia Society of Ottawa and Renfrew County: https://dementiahelp.ca/
- ASO: https://alzheimer.ca/on/en
- ASC: https://alzheimer.ca/en
- brainXchange: https://brainxchange.ca/public/home
Dans cet épisode, nous discutons avec Diane Dumaresq et Geneviève Arsenault-Lapierre. Diane a été proche aidante auprès de son mari Guy, décédé de la maladie d’Alzheimer en mars 2021. Leur dernière année ensemble a été marquée par la pandémie et les mesures sanitaires.
Geneviève, quant à elle, est chercheure auprès de l’équipe pancanadienne de Recherche en organisation des services sur l'Alzheimer – plus communément appelée l’équipe ROSA.
Diane et Geneviève collaborent actuellement sur un projet de recherche financé par les Instituts de recherche en santé du Canada. Ce projet, qui vise à améliorer la prise en charge des patients vivant avec des troubles neuro-cognitifs majeurs pendant la pandémie, réunit des chercheurs, des cliniciens, des patients, des proches aidants ainsi que des décideurs au Québec, en Ontario, en Saskatchewan et en Alberta.
Ensemble nous avons parlé de leur projet de recherche, de l’impact de la pandémie sur les personnes vivant avec des troubles neurocognitifs majeurs et leurs familles, ainsi que des services de santé et services sociaux en appui aux personnes atteintes de ces troubles.
Lisa Loiselle, explores the importance of the arts in the context of dementia from the lens of a personal advocate, Rev. Dr. Cynthia Huling Hummel and a care partner, Daniel Potts.
Cynthia started having memory problems at the age of 49. She did not consider herself an artist until after her diagnosis and now she is a published author, artist, and fierce Alzheimer’s advocate. Cynthia talks about how she got started in the arts and how that work has turned into her published book, “UnMasking Alzheimer’s”, a compendium of stores and photos of 36 masks that she created as an artist.
Daniel C. Potts, is a neurologist, author, educator, and champion of those living with Alzheimer’s disease and other dementias and their care partners. Inspired by his father’s transformation from a blue-collar worker to a watercolor artist after his dementia diagnosis through person-centered care and the expressive arts. Dr. Potts has sought to make these therapies more widely available through his foundation, Cognitive Dynamics. Danny also speaks about a dark time in his life after his father’s diagnosis when, as a neurologist, he felt unable to help his parents. Seeing his father’s artwork, however, sparked something in him and he began writing poetry to help him deal with his role as a care partner. Dr. Potts shares one of his poems during this podcast
Biographies:
Daniel C. Potts, MD, FAAN is a neurologist, author, educator, and champion of those living with Alzheimer’s disease and other dementias and their care partners. Selected by the American Academy of Neurology as the 2008 Donald M. Palatucci Advocate of the Year, he also has been designated an Architect of Change by Maria Shriver. In 2016, he was chosen by the University of Alabama Medical Alumni Association as a recipient of the Martha Myers Role Model Award, which honors physician alumni whose lives epitomize the ideal of service to their communities. Along with his wife, Ellen W. Potts, MBA, he authored A Pocket Guide for the Alzheimer’s Caregiver, which is recommended by the Alzheimer’s Association, the American Academy of Neurology, and Maria Shriver. Inspired by his father’s transformation from saw miller to the watercolor artist in the throes of dementia through person-centered care and the expressive arts, Dr. Potts seeks to make these therapies more widely available through his foundation, Cognitive Dynamics. Additionally, he is passionate about promoting self-preservation and dignity for all persons with cognitive impairment. He practices neurology at the Tuscaloosa VA Medical Center.
The Rev. Dr. Cynthia Huling Hummel of Elmira served in parish ministry for 15 years prior to her diagnosis of early-stage Alzheimer’s disease. She received her BS from Rutgers College, her MDiv from New Brunswick Theological Seminary, and her DMin from McCormick Theological Seminary. Cynthia is a fierce Alzheimer’s advocate and has become a voice for those living with dementia- locally, nationally, and internationally. She was recently appointed to serve a 4-year term on the 18 members, National Advisory Council on Aging representing the 5.8 million Americans living with Alzheimer’s and related dementias. Cynthia is passionate about Alzheimer’s research and is in her 11th year of the ADNI study. She is serving on the Dementia Action Alliance (DAA) Advisory Board and is the co-chair of the National Academies of Sciences Alzheimer’s Decadal Survey Advisory Panel. She has participated in three NIH Research Summits, the most recent in July 2020. Cynthia sings in the band ”Country Magic” and in 2016, was inducted into the NY State Country Music Hall of Honor. A lifelong learner, Cynthia enrolled at Elmira College in 2011 and has taken 40 classes so far. Cynthia is an artist and an author. Her book, “UnMasking Alzheimer’s” is a compendium of stories and photos of the 36 masks that she created. In 2019, ten of her Alzheimer’s masks were displayed at the National Gallery of Art in Stockholm during the 2019 Dementia X Conference. Cynthia loves to travel, kayak, to swim and enjoys serving as a substitute preacher. Her mantra? “Don’t focus on what you can’t do. Focus on how you can still make a difference.”
Resources:
Cognitive Dynamics Foundation: https://www.cognitivedynamics.org
Daniel and Cynthis singing in a tornado shelter: https://www.facebook.com/don.wendorf.9/videos/1844816778968134/?d=n
The poem Danny read on the podcast set to music: https://youtu.be/_4KrNQgjc_s
Guests Mike Belleville and Mary Fridley speak about Reimagining Dementia: A Creative Coalition for Justice . Mary, a longtime community activist recognized how COVID disproportionately affected people living with dementia and saw an opportunity for action and change. She brought together advocates from the arts community who had a similar mindset for social change and thought out of the box creatively. This newly formed alliance issued a Call To Action in September 2021. We also feature the Coalition's new song released on the same day as this episode.
The group has 500 members from 25 countries, with a passion for radically changing the culture of dementia through creativity and the arts has inclusivity at its core. As a member of the coalition, Mike feels that everyone has a voice and is heard. For people like him, with a dementia diagnosis, their opinions matter..
You can see a video of the song being performed at https://www.reimaginingdementia.com/campaign
Resources:
Reimagining Dementia Facebook Page: https://www.facebook.com/reimaginingdementia/
Article: https://content.iospress.com/articles/journal-of-alzheimers-disease/jad210057
Contact info: reimaginingdementia@gmail.com
Happy Holidays and thanks to all of our listeners, contributors, and supporters.
We have assembled 3 series to help you celebrate this season - Ars, Spirituality, and Women & Dementia. Check out our website.
We look forward to bringing you many interesting and innovative episodes in Season 4.
Simon Law is an award-winning songwriter, producer, and performer with two Grammy awards. Not only is music a large part of Simon’s life, but it was also an important piece of his father’s life even after he was diagnosed with dementia. Simon’s father appreciated music and especially loved the sounds of the Caribbean. Simon and his father were able to stay connected through the music they enjoyed.
Simon reflects on his time working at the Dotsa Bitove Wellness Academy and making the documentary “Music is Life” https://youtu.be/6bfYnZTMFRc and speaks about his new pursuit with the Bitove Method www.thebitovemethod.com an online program.
The full version of “Try a Little Kindness” can be viewed at https://youtu.be/v7reLCS6Qq8. More information on Voices in Motion including a train the trainer program can be found at https://voicesinmotionchoirs.org and www.facebook.com/VoicesInMotionChoirs
The full version of “Music Takes You Higher” can be found at https://www.youtube.com/watch?v=h2HcRUEbJiM
The full documentary from which the final clip was taken can be found at “ The Intergenerational Choir Project - Alzheimer Society London and Middlesex” https://youtu.be/L5o3Nh6ydb
Other Canadian resources include:
The Toronto Recollective is a weekly musical group that helps people with a cognitive impairment gain a new social network, rediscover a sense of accomplishment and find joy through music-making. https://www.recolectiv.ca
Several Alzheimer Societies offer customized recorded music for people. You can learn more at https://musicproject.ca/
Rachel Bar, the Director of Research and Health and TCAS Postdoctoral Fellow at Canada’s National Ballet School in Toronto speaks with Lisa Loiselle about dance and movement for those living with dementia. Rachel speaks about her lifelong involvement in dance and as a professional ballet dancer, and how that took her down an academic path researching how dance affects the brain. That subsequently brought her to working with older adults and people living with dementia, artistically and through program development.
Sharing Dance Older Adults is a collaborative program between Baycrest and Canada’s National Ballet School that works to make dance accessible for older adults with various physical and cognitive abilities. There are several versions of this program: In Your Seat and On Your Feet. These variations focus on dance across the lifespan and creating a joyful human experience in an accessible way, including delivering a group program and an at-home version. There are so many reasons and ways to dance, and Rachel talks about how the Sharing Dance Older Adults program includes and considers them all. She also speaks about the benefits of dance and how it can challenge the stigma about dementia.
As this program has expanded and continues to find ways to be more accessible, an app was launched in April 2021 to provide meaningful programs for Canadians, with hopes to expand internationally in the future.
Resources:
Journal article: Dancing With Dementia: Exploring the Embodied Dimensions of Creativity and Social Engagement (https://academic.oup.com/gerontologist/article/61/5/714/5903628) [see attached pdf]
link to the Sharing Dance site: https://oa.sharingdance.ca/
research project website: https://sdseniorsresearch.com/
https://www.dancingwithparkinsons.com
In this new episode of our Arts & Dementia series, Lisa Loiselle and special co-host Cynthia Huling Hummel, speak with couple Lynda Everman and Don Wendorf about the importance of the expressive arts in self-care. Don describes expressive arts are esthetic or artsy that have the power to prompt emotions, to allow for an expression of emotions or an emotional reaction, to prompt memories and associations and allow some participation and sharing of that kind of experience with other people. It can be anything artistic like music, visual arts, writing and poetry. For Linda Everman, it is fabric arts like quilting and making stoles. Linda describes how the stole initiative began and how it has evolved into the writing of a book. For Don and Cynthia, music has allowed each of them to express themselves but also connect with others. Cynthia, Lynda and Don also speak about the enjoyment they get from their respective arts endeavours and how that has allowed them to continue to live well as a person with dementia and as care partners.
For more information go to the Arts & Dementia section of our resource page.
We want to hear from listeners, guest interviewees, partners, and others about their experience of our podcast and gather feedback on how we can improve.
Groups will be held virtually over Zoom.
Participants will receive sample episodes to listen to in advance. The groups will take approximately 1 hour and will be recorded but privacy is assured.
We are hoping to begin these in early to mid-November. If you are interested, please fill out our form here https://forms.gle/a7hPoS4MTQHx5ZTh6 or contact Dementia.Dialogue@lakeheadu.ca
To sign up: https://forms.gle/1jkTYQNbsgCXMy8v9
Arne Stinchcombe chats with researchers doing work with lesbian, gay, bisexual, transgender, queer, and Two-Spirit (LGBTQ2+) persons with dementia and carers. Jason Flatt is an Assistant Professor in the Social and Behavioral Health Program at the University of Nevada (Las Vegas) School of Public Health. Jason discusses how he got involved in dementia research and some of the concerns of 2SLGBTQI+ persons with dementia in their caregivers. He also makes the case for why sexual and gender diversity are important considerations within dementia research.
Celeste Pang (Senior Research Officer, Egale Canada) and Ashley Flanagan (Research Fellow, National Institute on Ageing) are researchers working on a Canadian research project involving LGBTQ2+ persons living with dementia and their unpaid carers in Canada. We discuss some of the findings from their research project and their implications.
Both interviews reveal a need for specific initiatives to respond to this community's needs, especially in regards to caregivers.
Resources:
https://www.albertahealthservices.ca/assets/info/pf/div/if-pf-div-continuing-care-situational-examples.pdf
https://open.alberta.ca/dataset/0432e7da-2884-4a39-8b17-6199cadd4b7b/resource/5aeb5c77-bd1f-4963-ae4c-893e7c738340/download/social-isolation-l
https://www.cmaj.ca/content/191/31/E851
https://xtramagazine.com/health/queer-trans-care-for-older-adults-18373
https://clri-ltc.ca/lgbtq/
https://www.virtualhospice.ca/2slgbtq/
https://egale.ca/
This episode is the first in an 8-part series on the arts features a discussion on how the arts (in any form) can create a sense of community and belonging and builds relationships amongst participants. Host Lisa Loiselle talks with Lisa Meschino who has seen this first-hand during her work developing programs such as Gather at the Gallery and as an artist at the Dotsa Bitove Wellness Academy. Lisa holds a PhD in cognitive neuroscience and is a community-engaged visual artist and researcher living in Toronto. She has worked for many years creating art with people living with dementia and is developing an arts-based learning series in applied relational care at University Health Network (UHN), Toronto. She has unfortunately witnessed the stigma that continues to circulate in communities and discusses the importance of using the arts to help in the process of culture change.
Resources:
About Meet Me at MoMA Program:
- Meet Me at MoMA website – Program Guide for home and community programs:
https://www.moma.org/visit/accessibility/meetme/modules/
-
Meet Me at MoMA website - Pilot program and research document: https://www.moma.org/visit/accessibility/meetme/_assets/momaorg/shared/pdfs/docs/meetme/MeetMe_FULL.pdf
-
Rosenberg, Francesca (2009) 'The MoMA Alzheimer's Project: Programming and resources for making art accessible to people with Alzheimer's disease and their caregivers', Arts & Health, 1: 1, 93 — 97
About The Dotsa Bitove Wellness Academy:
- Mitchel, G.J., Dupuis, S.L., & Kontos, P.C. (2013). Dementia Discourse: From Imposed Suffering to Knowing Other-Wise. Journal of Applied Hermeneutics 2013 Article 5
- Mitchell, G.J., Jonas-Simpson, C., Richards, J., Brown, S., Bitove, V. (2019). Creating a relational arts-based academy for persons living with dementia. First Published December 24, 2019 Find in PubMed: https://doi.org/10.1177/1471301219895647
- Visual arts and transgenerational learning at the Bitove Academy: https://vimeo.com/540302311
- About the Bitove Academy: https://vimeo.com/50757222
Resources for this episode can be found under the following sections on our resource page: -Arts & Dementia
Mary Beth Wighton and Lisa Poole, co-chair the Dementia Advocacy Canada (DAC) our the leading advocacy organization of people with lived experience of dementia. In this episode, they talk about DACs efforts to strengthen our National Dementia Strategy especially in a meeting they had on June 8 2021 with then Minister of Health, Paddy Hadju.
13 DAC members discussed challenges in implementing the strategy and their recommendations for improving it. To read DAC’s presentation click on https://www.dementiadialogue.ca/upload/documents/nat-strat-dac-notes.pdf
The National Strategy was announced in August 2019. To read it. Click here
A Dementia Strategy for Canada: Together We Aspire: In Brief.
An updated report was published in 2020 and can be found at https://www.canada.ca/en/public-health/services/publications/diseases-conditions/dementia-strategy-annual-report-parliament-june-2020.html
To learn more about Dementia Advocacy Canada check out their website https://dementiacanada.com
In our podcast, a frequent message is the importance of people with dementia remaining active and involved with others. This is often easier said than done because of restricted options that people often experience or perceive. The Dementia Inclusive Choices for Exercise (DICE) project enables communities to be more inclusive so that people with dementia have more opportunities to be active.
Carole Johannesson lives with dementia and is a leader in a research project conducted by Laura Middleton, PhD at the University of Waterloo. Brian Johannesson has supported Carole’s participation. The project worked with both people with dementia and exercise providers to explore what inclusivity means and what providers need to possess or do, including understanding what dementia is and developing techniques to facilitate inclusion
Dementia Inclusive Choices for Exercise (DICE) has developed excellent resources for people with dementia and for exercise providers, including a 4-part training module to help exercise providers, sports coaches or recreational leaders gain the knowledge and skills to engage with people living with dementia and support them in physical activity. These can be accessed at www.dementiaexercise.com.
In this podcast, the Mersereau family shares their experiences with dementia. Clara and Bill live together in Thunder Bay, Ontario. Clara was diagnosed with dementia four years ago. Bill, her husband, supports her as they experience the joys, challenges, and everyday life with Clara’s diagnosis. Their two daughters, Jo-Ann (who lives in Thunder Bay) and Patty (who lives in Winnipeg) join in to share their experiences as daughters supporting their parents.
Services and research are often divided into focusing either on the people living with dementia or on the care partners. However, dementia affects not only individuals but family units as well. Dr. Elaine Wiersma interviews the Mersereau family to get their perspectives on how, as a family, they have learned to live with dementia and support each other along their journey. Poignant and touching, you will be inspired by their love for each other.
If your family would like support on your journey living with dementia, contact your local Alzheimer Society for information and resources.
The Solidarity of Sisterhood: Women Living with Dementia
Three inspiring women living with dementia—Brenda, Clara, and Myrna, talk with Dr. Elaine Wiersma about what a diagnosis means to them. Through a “kitchen table” conversation about the challenges and joys of being women living with dementia, you will walk away inspired by their courage and resilience.
Women are more likely to be impacted by dementia, both as people living with a diagnosis and as care partners. While gender has largely been ignored in dementia research and supports, these women’s stories illustrate the importance of understanding how dementia impacts various groups of people.
Since Brenda Hounam was diagnosed in 2000, she has been an active advocate for people living with dementia. She is the founder of the By Us For Us (BUFU) guides, a series of booklets for people with dementia by people with dementia. Brenda was a guest in Episode # 21.
Clara Mersereau is one of the most kind, and loving spirits anyone could know. She’s always the first to find the bright side if you are having a hard time seeing it. Clara was diagnosed with Alzheimer’s just over 4 yrs ago. Clara and her family will be/are featured in Episode 33.
After being diagnosed 12 years ago with frontal temporal dementia, and after several years of despair and questioning, Myrna Norman began to educate herself about dementia. She was 59 at the time. Since then, Myrna has become an Advocate for all Persons Living With Dementia and their family and friends. Norma talks more about her life and her writings in Episode 23.
Dr. Elaine Wiersma, PhD, Associate Professor, Department of Health Sciences, and Associate Director, Centre for Education and Research on Aging & Health (CERAH), Lakehead University, Thunder Bay, Ontario, Canada.
If you are a woman living with dementia and would like to join an online bi-weekly Sisterhood group for women living with dementia, please contact Elaine at ewiersma@lakeheadu.ca .
For further information, please see the following resources:
A short video called “Women with Dementia Living Strong”
https://www.youtube.com/watch?v=aG8BKSyFUK0
Bamford, S. (2011). Women and dementia—not forgotten. https://ilcuk.org.uk/wp-content/uploads/2019/01/Women_and_dementia.pdf
Alzheimer Society of Canada
https://alzheimer.ca/on/sites/on/files/documents/2015%20Media%20Releases-.pdf
Alzheimer Society UK—Why is dementia different for women?
https://www.alzheimers.org.uk/blog/why-dementia-different-women
Alzheimer Disease International—Women and Dementia: A Global Research Review
https://www.alzint.org/resource/women-and-dementia-a-global-research-review/
Academic articles:
Broders, K.1, & Wiersma, E.C. (2020 online first). Creating change: The experiences of women living with young-onset dementia. Disability & Society. https://doi.org/10.1080/09687599.2020.1848801
Bartlett, R., Gjernes, T., Lotherington, A-T., Obstefelder, A. (2018). Gender, citizenship and dementia care: a scoping review of studies to inform policy and future research. Health and Social Care in the Community, 26(1), 14-26. https://doi.org/10.1111/hsc.12340
Sandberg, L.J. (2018). Dementia and the gender trouble? Theorizing dementia, gendered subjectivity and embodiment. Journal of Aging Studies, 45, 25-31. https://doi.org/10.1016/j.jaging.2018.01.004
Episode 4 of our Dementia & Spirituality Series: What we do here counts – Sharing stories of spirituality and caregiving
Rev. Faye Forbes and Lisa Loiselle are joined by guests Matthew Dineen and Janice Keefe, PhD to discuss the spiritual needs of the person living with dementia and their care partners. Grounded in their faith communities, Matt and Janice describe how this has provided them with the strength on the dementia journey, as care partners and as advocates.
Matt's wife Lisa was diagnosed with frontotemporal dementia at the age of 43 in 2013 and subsequently moved into long-term care. They have three children. His resolve to help shed light on the younger face of dementia has included numerous addresses such as the G7 Global Action against Dementia Legacy Event (Ottawa, 2014). He is a Team Member of Dementia Advocacy Canada (DAC) https://dementiacanada.com/. Together with his children, Matthew spoke on the impact of dementia upon adolescents at the 2016 AFTD Education Conference. Matthew is currently involved in assisting organizations with implementing guidelines for how to make Canadian places of worship more dementia-friendly and inclusive.
Janice is Professor and Chair of Family Studies and Gerontology at the Mount Saint Vincent University and is Director of the Nova Scotia Centre on Aging. Her research interests include continuing care policies and practice, family/friend caregivers and rural aging. With her eight siblings and their families, Janice cared for her mother Genevieve. As part of her voluntary efforts, she provides workshops on caregiving and spirituality and other topics.
Resources
Berry, K. (2016). When Words Fail: Practical Ministry to People with Dementia and Their Caregivers. Centennial, CO: FaithHappening Publishers. Note: To view demonstration videos and to download a free Study Guide, go to:www.whenwordsfail.com
An extensive bibliography is available by writing dementia.dialogue@lakeheadu.ca
Early on, Megan O’Connell and Claire Webster sensed the impact that COVID-19 would have on care partners of people living with dementia in the community. Megan is based at the University of Saskatchewan and Claire who was caregiver for her mother before she died, has her own company http://www.carecrosswalk.com and is lead for McGill Cares http://www.mcgill.ca/dementia
As members of the Alzheimer Society Of Canada Task Force on COVID-19, https://alzheimer.ca/en/help-support/dementia-resources/managing-through-covid-19/covid-19-tips-caregivers, they undertook a scoping review https://link.springer.com/article/10.17269%2Fs41997-021-00500-z which concluded that “COVID-19 has severely impacted the lives of people with dementia and their care partners”. People with dementia and care partners experienced care partner fatigue and burnout, confinement challenges, and worsening neuropsychiatric symptoms and deteriorating cognitive function. These were worsened if people lived alone, had advanced dementia and were confined for a long time.
Through the Rural and Remote Memory Clinic team at USask, www.ruraldementiacare.usask.ca, Megan was already experimenting with technology to extend services to rural areas and reduce travel burden. She helped the Alzheimer Society of Saskatchewan www.alzheimer.ca/sk adapt their services to an online model to compensate for the loss of caregiver supports. Claire likewise migrated her caregiver service using ZOOM and the McGill Cares went online.
Megan and Claire talk about their observations of the experience of care partners and families during COVID 19 and the success of technological changes in help mitigate people’s isolation. They agree that more consideration needs to be given to how decisions impact people’s rights and reiterate the central role of care partners and families as advocates for those who cannot speak for themselves.
Other related research by Dr. O’Connell et al:
Going From Zero to 100 in Remote Dementia Research: A Practical Guide https://www.jmir.org/2021/1/e24098/
Using Twitter to Understand the COVID-19 Experiences of People With Dementia: Infodemiology Study https://www.jmir.org/2021/2/e26254
Claire Webster recommends The Care of the Older Person” written by colleagues from McGill “to provide concrete answers for care providers …as well as spouses and children of the elderly. Most importantly, this information is for seniors themselves… “ https://careoftheolderperson.com/
In this episode in the spirituality and dementia series, we engage in a passionate discussion about spirituality, care, and support of people living with dementia from a lens of diversity and culture. This episode features Roberta Bishop and Elder Mary Wilson, hosted by Rev. Faye Forbes and Lisa Loiselle. Roberta Bishop, Operations Manager at the Rainbow Resource Centre in Winnipeg Manitoba has both professional and personal experience supporting those living with dementia. Professionally, she has witnessed the rapid decline of some members of Over the Rainbow, a social support group for 2SLGBTQ+ community members aged 55 plus or minus https://rainbowresourcecentre.org/support/groups/over-the-rainbow/#:~:text=A%20social%20support%20group%20for,Manitoba%20Association%20of%20Senior%20Centres. Her own experience with dementia on the personal side is with family members, including her Mother.
Elder Mary Wilson http://marywilson.ca, also from Winnipeg Manitoba is known to many as Grandmother Of Four Directions and Walks With Wolves. She is renowned in Canada and many parts of the world as a spiritual teacher, Spirit Walker, and Healer. As a traditional expert, Mary has touched many lives over the past forty years helping people heal, emotionally, physically, and spiritually. She is active in health research and has traveled worldwide presenting alternatives in Indigenous health. Mary shares her story of supporting her mother living with dementia in addition to a close friend who passed at a very young age from dementia. As a professional, it is her responsibility as a healer to also support community elders. Although Roberta and Mary’s lenses are different, an important connection is the stigma and persecution 2SLGBTQ+ community members and indigenous Canadians have faced over many years. Both Roberta and Mary agree that individuals have to be respected and treated as individuals. It is important to bring people peace, joy, and happiness by continuing to provide them with the things they love and to continue to engage the spirit on one’s journey, whether that be dementia or another journey. They are both adamant that we need to stop hate and talk about love. We all need to recognize and acknowledge the hurt that has been inflicted on the 2SLGBTQ+ and Indigenous populations in Canada and to start the healing process. We can’t change history; however, we can learn from history so that history does not repeat itself!
We are changing things up a bit and this episode talks about some new producers and what topics we will be showcasing in upcoming episodes.
Women and Dementia and Dementia in the Family context are 2 episodes that Dr. Elaine Weirsma, Ph.D. of Lakehead University will be discussing. Dementia from a woman’s perspective involves 3 engaging and articulate women who share a diagnosis of dementia and much more. Dr. Weirsma’s second episode explores dementia in a family context and interviews one family and their experience.
LGBTQ2S communities encounter dementia in similar, yet different ways from mainstream communities. Dr. Arne Stinchcombe, Ph.D., is producing a 4-part series on how gay people and care partners in unique ways experience dementia, resources available to them and some of the research underway. To learn more about Arne’s own research contact astinchcome@brocku.ca
Kathy Hickman and Jillian McConnell of the brainXchange (www.brainXchange.ca) are looking forward to creating a series on young-onset dementia and its impact on younger families, young caregivers, and children of a parent with dementia. This 4-part series will include interviews with people with lived experience, support services and researchers.
Lisa Loiselle convenes a second series, this one on the Arts and Dementia is in 8 parts and covers a range of arts and how they enrich the lives of people living with dementia. Lisa also will explore how dementia is represented in the arts, especially in contemporary media. Cynthia Huling Hummel, author of Unmasking Alzheimers:-Memories Behind Masks (https://www.amazon.ca/Unmasking-Alzheimers-Memories-Behind-Masks/dp/1387202189) joins Lisa as co-host for some of the episodes.
Dementia Connections has spread its wings to encompass all of Canada. You can sign up for a Free Digital Issue: https://dementiaconnections.ca/free-digital-issue/
Guests Elisa Bosley and Christine Thelker discuss spiritual care for people living with dementia. Elisa speaks from the voice of a chaplain’s relationship with those living with dementia and Christine from a first-person voice regarding her own spirituality and supporting others living with dementia.
The conversation focuses on how spirituality is part of every human being. It goes beyond a particular faith expression (religion) to a sense of joy, hope, comfort, assurance, safety. Unfortunately, spiritual care is often overlooked for people with dementia who live in long-term care communities, sometimes due to a lack of knowledge, time, budget, or comfort level. Both Elisa and Christine reflect on the fact that with the right resources and training, providing engaging, interactive spiritual care for people with dementia is possible for anyone.
Christine Thelker, author of "For this I am Grateful" https://www.austinmacauley.com/us/book/i-am-grateful was diagnosed at age 56 with Vascular Dementia and Cerebrovascular Disease. As a former health worker in Dementia Care and End of life care, she advocated for families and for better training for health care workers. Christine is an advocate with Dementia Alliance International https://www.dementiaallianceinternational.org and writes a blog https://chrissysjourney.com/ and has presented at national and international conferences.
Elisa Bosley, Christian chaplain from Boulder Colorado is the founder of https://spiritualeldercare.com/ a free resource of original worship service agendas, Bible discussion guides, sing-along classic hymns, and more, all designed to meet the spiritual needs of older adults with Alzheimer’s and other dementias..
Other Resources
Dementia-Friendly Worship: A Multifaith Handbook for Chaplains, Clergy and Faith Communities
https://www.amazon.com/Dementia-Friendly-Worship-Multifaith-Chaplains-Communities/dp/1785926659
When Words Fail: Practical Ministry to People With Dementia and Their Caregivers. Kregel Publications. 2018 . Kathy Fogg Berry
Ministry with the Forgotten (2020) by Kenneth Calder
Mary Beth Wighton’s warmth, candor and strength shine through as she talks about her journal, now in book form, Dignity and Dementia: Carpe Diem.
Written over a 6 year period, Mary Beth’s personal reflections frequently acknowledge the gifts from people in her life that have enabled her to live a full life and become a leading advocate for her peers living with dementia. The entries began as notes to her family and like ripples in a pond, they grew outward to reach a wider audience.
Mary Beth is co-chair of Dementia Advocacy Canada https://dementiacanada.com/ and member of the Advisory Board for Canada’s Dementia Strategy https://www.canada.ca/en/public-health/corporate/mandate/about-agency/external-advisory-bodies/ministerial-advisory-board-dementia/summary-experience-expertise.html
Our interview concludes with Mary Beth encouraging people with dementia to focus on their abilities, set some goals in whatever area(s) they choose and take themselves seriously in pursuing them.
Dignity and Dementia: Carpe Diem is published by Friesen Press https://books.google.ca/books/about/Dignity_Dementia_Carpe_Diem.html?id=CsQfEAAAQBAJ&redir_esc=y. It can be purchased through your local bookstore or online.
In this, the first episode of a 4-part Spirituality Series, Jane Kuepfer joins co-hosts Rev. Faye Forbes and Lisa Loiselle to introduce the topic of spirituality and dementia. Jane, RP, PhD, MDiv, is the Schlegel Specialist in Spirituality and Aging with the Schlegel-UWaterloo Research Institute for Aging (RIA). She is a spiritual director, an ordained minister, and a registered psychotherapist, and currently serves as a spiritual care provider in a retirement home. In her role with the RIA, Jane coordinates an annual Spirituality and Aging Seminar, conducts research and teaches graduate courses in Spirituality and Aging.
This episode begins by providing a definition of spirituality – that is, connection and meaning, the essence of life, and transcendence. Referring to the work of Bob Atchley and the idea that spirituality is about our ability to perceive experiences as spiritual, therefore, when we think about spirituality and dementia, Jane goes on to speak about spirituality and that it is not dependent on cognition. Rather, it is about being fully alive.
Later in the episode, Jane discusses the difference between spirituality and religion. Spirituality can be expressed in many ways and both Jane and Faye talk about how they convey spirituality, for example being involved in hope and peace-making in the world. Even thinking about dementia and what it means is a spiritual question according to Jane and that spirituality is a resource for people living with dementia. There are three aspects of spirituality that endure as dementia progresses and Jane goes into detail on these aspects. To wrap up the episode, Jane provides some way that people can support those living with dementia to express their spirituality.
You can find more information at these sites or at our resource page dementiadialogue.ca
https://www.beingpatient.com/voice/janice-hicks-reflects-spirituality-in-dementia/
Webinar– Spiritual Resiliency, Dementia and Caregiving During Uncertain Days: Staying grounded through hopeful stories and faith practices (May 2020) with Janet Ramsey
https://uwaterloo.ca/grebel/events/spirituality-and-aging-seminar
https://www.spiritualityanddementia.org/
Happily Ever Older
Moira Welsh’s new book Happily Ever Older: Revolutionary Approaches to Long-Term Care is a “call to action”. Moira sees the need to change the way we provide support to people who have complex needs, especially people with advanced dementia. Over almost 20 years as a reporter for the Toronto Star, Moira has documented the shortcomings of long-term care in Ontario. Her investigative journalism had won her many awards but has not secured the change she sees needed.
In this episode and in her book, Moira outlines a new strategy that offers us real-life examples of how long-term care can be different. These strategies include the Butterfly Effect, the Eden Alternative, Greenhouse Project, as well as introducing alternative care settings like de Hogewey, Carol Woods, and Sherbrooke Community Centre. More information on each of these options can be found on the internet.
“There is a real acceptance for change right now. Now is the time…” and Moira suggests that each of us needs to write our elected provincial and federal members asking for new standards for long-term care. She also suggests joining advocacy groups like CanAge www.canage.ca and also, if people are in a position to, asking LTC operators to adopt some of these new approaches.
You can win a copy of Happily Ever Older by writing dementia.dialogue@lakeheadu.ca.. Please put ‘Happily’ in the subject line.
Happily Ever After is published by ECW and can be purchased through your local bookseller or online.
You can find some of Moira’s articles by following these links. Others are posted on our resource page.
This article describes the Butterfly Effect being introduced in Peel Region.https://projects.thestar.com/dementia-program/
This article describes how Covid is being managed within a long-term care home.
https://www.thestar.com/news/canada/2020/05/30/a-day-in-the-life-and-death-on-the-sheridan-villa-covid-unit.html
Moira examines the impact of COVID isolation on long-term care residents.
https://www.thestar.com/news/canada/2020/06/28/what-pandemic-isolation-has-done-to-ltc-residents.html
This article recounts some of the underlying faults in long-term care that COVID has exposed.
https://www.thestar.com/news/canada/2020/04/28/covid-19-has-exposed-what-long-term-care-lacks-will-the-response-fix-it.html
Almost 20 years ago, Brenda Hounman a woman living with dementia, responded to an advertisement posted by the Murray Alzheimer Research and Education Program’s (MAREP) Dr.Sherry Dupuis PhD, and thus began a fruitful collaboration. This episode describes how the relationship between “participant” and researcher has evolved, some of the results of the partnership and some lessons-learned that can help others replicate their experience.
Brenda and Sherry describe several of the projects that were created through the partnership between researchers and people with lived experience. The first project Brenda and Sherry worked on was The Changing Melody https://the-ria.ca/resources/a-changing-melody/. It was a ground-breaking forum where people living with dementia and care partners shared experiences and for many, it was the first time they spoke openly about how dementia has affected them.
Brenda initiated the BY US FOR US guides https://the-ria.ca/resources/by-us-for-us-guides/ that Dr. Dupuis and MAREP supported and continue to support two decades later. A 15th guide is about to be released. Sherry and Brenda also discussed the Living Well with Dementia Project that worked on filling some of the information gaps people experience when diagnosed with dementia. https://uwaterloo.ca/living-well-with-dementia/care-and-support.
Initially, based on Participatory Action Research (PAR), the collaborations evolved in a way unique to people living with dementia which they refer to as “Authentic Partnerships”. You can read more about this in "Use of participatory action research approach to develop a self-management resource for persons living with dementia" https://journals.sagepub.com/doi/full/10.1177/1471301221997281
Dupuis and a colleague Dr.Carrie McAiney, PhD, have continued this line of research in a project Partnerships in Dementia Care that explores the possibilities of introducing authentic partnerships into long-term care settings. This is described at Authentic Partnerships | Partnerships in Dementia Care | University of Waterloo (uwaterloo.ca).
A listener to this episode can win a set of the guides donated by the Research Institute on Aging at UWaterloo by writing to dementia.dialogue@lakeheadu.ca
David Czuczman is helping other people with Frontotemporal Dementia (FTD) and, just like she has throughout his 12 years of living with the condition, his wife Jill is supporting him all the way. David overcame some initial reservations and became an active participant in the Ontario Neurodegenerative Research Initiative (ONDRI www.ondri.ca). Jill, as a care partner, also participates in contributing data about her experience as a care partner but also as co-chair of the Patient-Community Advisory Committee (PCAC). Rick Swartz is a physician and research co-lead of the ONDRI project.
This episode explores the evolution of how people with lived experience who volunteer for research projects are being viewed no longer just as “subjects” but as “participants” and “collaborators”. As Rick says, research is becoming a team sport and people with lived experience are part of the team. Jill describes what motivated her and David to enroll in the study and her own realization that she had a choice about how to respond to the challenge of David’s diagnosis. Her search for information and knowledge has led her to learn more about FTD and to reach out to obtain and offer support through such initiatives as a Facebook page that she hosts.
Jill describes some of the activities/tests that David underwent annually through the initial ONDRI study and also how they have contributed to pilots that are leading to a new iteration of ONDRI. She talks about things she has learned along the way and about hopes she has for how participants might learn more about their situation, through the research. Rick outlines how the next study will try to provide more timely and relevant information to participants. He also shares how the members of the PCAC help guide the research and even the development of the research questions.
Jill’s Facebook page can be found at “Frontotemporal Dementia (FTD) Durham Support Group”. A video that Jill made about strategies she finds helpful as a care partner is at https://ondri.ca/ondri-supporting-international-self-care-day
Ontario Neurodegenerative Research Initiative (ONDRI) www.ondri.ca
For more information about the Ontario Brain Institute, click https://braininstitute.ca
For information about the Canadian dementia research priorities click on https://alzheimer.ca/en/research/10-priorities-dementia-research-canada
The idea of life choices is woven throughout this episode’s conversation with Myrna Norman. Her life has not been easy, having been widowed in her mid-40’s with a growing family but she has got on with life in a remarkable way. Challenges confronted her when she was first diagnosed with Frontal Temporal Dementia (FTD) but she uncovered options and the choices they presented.
Our ‘kitchen table” conversation was much like her book Dementia Strategies, Tips and Personal Stories – warm, refreshingly candid and encouraging of others. Myrna talked about her family and what lead up to and followed her writing Sometimes My Nana, a small story book for young children grandparent or other person with dementia. Our episode opens with Myrna reading from one of her recent poems I am not afraid. In the background of her ‘Zoom Room’ was a painting that she is currently working on.
While writing and art are a big part of Myrna’s life, her main work is advocacy – seeking to improve life for people with dementia and to impart her philosophy of making positive steps to make the best of a dementia diagnosis. Myrna has nothing to prove but she has something to share.
Dementia Strategies, Tips and Personal Stories can be purchased by contacting the.normans@shaw.ca.
Sometimes My Nana can be downloaded for free at http://www.dementiadialogue.ca/uploads/1/1/5/2/115204585/sometimes_my_nana.pdf
I am not afraid can also be downloaded at http://www.dementiadialogue.ca/uploads/1/1/5/2/115204585/i_am_not_afraid.pdf
Myrna’s Facebook page –Dementia Middle Stages can be found at https://www.facebook.com/groups/Midstagedementia
For more information about Purple Angels go to www.Purpleangel-global.com
Jim Berry and Bill Heibein are members of the North West Dementia Working Group (the Group) that was formed in 2014 by people with dementia and care partners to work to promote the change that they want to see happen to improve the lives of people living with dementia. The group is small, about 20, but mighty in its ambitions and accomplishments.
Jim and Bill share some of their motivations for belonging to the group and describe some of their accomplishments. Two of the ones of which they are most proud is a conference entitled Living Well with Dementia convened in Thunder Bay in 20xx and repeated in Dryden. As well, the group has started the Dementia Café in Thunder Bay that is entering its third year. Both projects have attracted volunteers beyond the core group of 20. The Café and the Zoom.
Jim and Bill also discuss an action research project that they are involved with, called Building Capacity. They have partnered with a seniors agency network in Vancouver along with researchers at Lakehead University and UBC. Bill and Jim describe their approach as “bottom-up” and the Vancouver group as more “top-down”. The idea is to see how the bottom-up group can influence community organizations to better serve people with dementia and how the top-down group can learn to involve people with dementia in program development.
Jim and Bill both feel groups like theirs not only offer opportunities for people to make a difference but also to benefit personally by becoming involved.
Dementia Cafe can be contacted at: dementia.cafe@lakeheadu.ca
The Dementia Cafe Facebook page is: https://www.facebook.com/Dementia-Cafe-A-Place-to-Belong-2611577718917565/
The NWDWG Facebook page is : https://www.facebook.com/North-West-Dementia-Working-Group-109779593941900/ and their Email is nwdementiaworkinggroup@gmail.com
For more information about the Building Capacity project https://crpd.ubc.ca/building-capacity-project/
Building Capacity Workshop Report - 2020 https://afa49033-9fa2-44a2-850f-d2a38a8ac3e2.filesusr.com/ugd/f7b74e_4fe6378f211c400fb2f36713f6576277.pdf
This is the first in a multi-part series on Dementia Friendly Communities. In it, Phyllis Fehr, a member of our Editorial Board and also a member of the Dementia Friendly Communities project of the Hamilton Council on Aging hosts a discussion with Debbie Keay a fellow member of the Hamilton Ontario Project and Roger Marple who is active in a Dementia Friendly project in Calgary, Alberta.
These projects are different from each other but the motivations behind these 3 people, all of whom have dementia, share many similarities. Each person is actively living a life that they thought was lost to them when they were first diagnosed with dementia. Through their own research and reaching out to groups like the Alzheimer Society, each has learned how to adjust to having dementia and to live a full and meaningful life. They want to help other people living with dementia to avoid often self-limiting behavior and to reduce the stigma associated with having dementia. Dementia Friendly Communities is one way.
The Dementia Friendly Community movement is worldwide and is growing in Canada. Many Alzheimer Societies and other community organizations are involved. You can find out more about Roger and Phyllis by searching their names on the internet. Media articles about Phyllis and Debbie’s project include:
- https://www.thespec.com/opinion/contributors/2020/11/03/survey-will-help-build-dementia-friendly-cities.html#:~:text=Currently%2C%20the%20Alzheimer%20Society%20estimates%20that%20there%20are,and%20executive%20and%20physical%20functioning%2C%20among%20other%20symptoms.
Roger's videos can be found at:
https://www.dementianetworkcalgary.ca
This webpage links to each of the partner province’s DFC sites, which contain some great resources:
https://alzheimer.ca/en/take-action/become-dementia-friendly/dementia-friendly-canada
- B.C.: https://alzheimer.ca/bc/en/take-action/dementia-friendly-communities
- Saskatchewan: https://dementiafriendlysaskatchewan.ca/
- Manitoba: https://alzheimer.mb.ca/we-can-help/programs-and-services/dfc/
- Ontario: https://alzheimer.ca/on/en/take-action/become-dementia-friendly/dementia-friendly-communities-ontario
- Dementia-Friendly Canada webinar, March 2020: https://vimeo.com/402941879
Reflection, Reframing and Reimagining (repeat of Episode 4, Season 1)
Susan Bithrey and her husband Reg were looking forward to the perfect retirement until life interrupted. Susan describes how she reframed her experience and found ways to affirm her husband’s strengths, even as they diminished. In the process, she found new strengths within herself.
As a retirement gift, Susan was given a journal to record their many “golden year’s” adventures that they had planned together. Instead it sat empty until a year before Reg’s Alzheimer’s diagnosis when she started to keep an account of her concerns about his memory struggles. It became a five-volume tool for documenting the disease and for reflective learning for her and she generously shares her very poignant first entry with us.
Susan honestly reflects on having to learn on the job of becoming a caregiver; figuring out how and when to roll up her sleeves and jump in and when to have Reg speak for himself, make his own decisions and recognize his ability to do so. She also bravely shares some stories surrounding the heartbreaking personality changes that her husband went through and recommends grief counseling for caregivers in this situation.
Her humble and wise words to conclude this episode will resonate with anyone else encountering the same circumstances.
Resources that may be helpful to listeners of this episode include:
Shifting the Focus – a quick guide to behaviours associated with dementia and some tips on responses. https://brainxchange.ca/Public/Files/Behaviour/ShiftingFocusBooklet.aspx
In Ontario, there is an extensive network related to behavioural supports that includes services, as well as information resources. They can be accessed at https://www.behaviouralsupportsontario.ca
The Research Institute on Aging at the University of Waterloo publishes a series –By Us, For Us which are information booklets created by people with lived experience. These can be found at https://the-ria.ca/resources/by-us-for-us-guides/
Ron Posno is a retired educator living with mild cognitive impairment. He shares with us some of his experiences and talks about coming to terms with his condition and continuing to live a full life with many great examples and tips.
Ron became aware of some cognitive struggles he was having and became worried. This led him to visit his doctor whereupon describing his concerns, she administered the Montreal Cognitive Assessment (MoCA) which he passed at that time. A year later, his struggles persisted so he insisted on a referral to a specialist where he received his diagnosis. This was a relief for Ron because his philosophy is to accept, adapt and plan.
He stresses the importance of accepting a dementia diagnosis so that you can learn how to adapt and live happily, productively and purposefully. He directs others living with a diagnosis to find the people and organizations that are out there, eager to support them because support will be needed and to plan ahead while you are still able to.
As he says, “When you see the clouds outside, you know the rain's going to fall so you carry the umbrella, don't you?”
Ron urges people to talk about their dementia and to share their experiences as this will help eliminate the shame and stigma that can come with it. His positive and practical attitude in the face of his illness is very inspirational.
In this episode, Ron talks about "Learning the Ropes" sessions for people living with mild cognitive impairment at the Alzheimer Society. More information on that program can be found here:
https://alzheimer.ca/huroncounty/en/learning-ropes-living-mcir
Bill C-7 proposes certain changes to the legislation on medical assistance in dying. In this episode, Dr. Mariette Brennan, a professor in Constitutional Law and Health Policy at the Bora Laskin Law School, Lakehead University, outlines the origins of this legislation in Canada, the current legislation and the proposed changes in Bill C-7.
When the current law (Bill C-14) was passed in 2016, 3 outstanding issues that remained to be addressed by Parliament, namely mental illness, mature minors and advance directives, were referred to the Council of Canadian Academies (CCA) for further study and advice. One of these matters, mental illness, is addressed in BillC-7 but mature minors and advance directives will be further examined by Parliament.
While Bill C-7 excludes mental illness as an eligible disease, it expands eligibility for persons experiencing intolerable suffering but whose death is not foreseeable. Safeguards are modified by simplifying access in one instance where there is reasonable foreseeable natural death and by adding safeguards with respect to intolerable suffering.
Our resource page contains material on MAID from sources such as the Department of Justice https://canada.justice.gc.ca/eng/csj-sjc/pl/ad-am/c7/p1.html .Dementia Advocacy Canada’s Statement on MAID https://dementiacanada.com/resources and that of the Alzheimer Society of Canada https://alzheimer.ca/en/help-support/im-caring-person-living-dementia/end-life-care/medical-assistance-dying and a CBC video of a "town hall' meeting on MAIDhttps://www.youtube.com/watch?v=L_2EDiuzr58
You can become involved by contacting your MP and expressing your thoughts and also by contacting one of many non-governmental groups participating in the debate.
In this episode, I interview Christine Thelker, a dementia activist from British Columbia and author of For This I am Grateful: Living with Dementia. Christine’s book evolved from a personal journal to a blog and eventually to a book that was published in June 2020. Christine is 60 years old and has experienced symptoms of dementia arising from cardiovascular disease for 5 years. In our discussion, we explored the themes of gratitude and grief, taking care of yourself, and advocacy. We also talk about Christine’s decision to “go public” with her writing and the close link this decision had, with her becoming involved with dementia advocacy, especially through Dementia Alliance International.
Christine is also an artist, having designed her own book cover, but did not paint or draw until after being diagnosed. We talked about how through her writing, painting, blogging and speaking, art contributes to her ability to live with and through her dementia. Our interview is the first in a series that will focus on arts and dementia. The foreword to her book is written by Kate Swaffer, Chairperson of Dementia Alliance International.
You can buy Christine’s book at your local bookseller, Chapters/ indigo, or (dare I say it) Amazon. The ISBN # is 978-1-6457569-9-6. It is published by Austin Macauley. You can also follow Christine’s blog https://www.facebook.com/110344063740906
A free copy will be given to a name drawn at random from listeners who write to dementiadialogue@lakeheadu.ca. The name will be drawn on December 1.
Jim Mann, a dementia activist from BC and Jacobi Elliott, PhD a researcher with the Geriatric Health Systems Research Group at the University of Waterloo both share a passion for improving the experience that Canadians have in our health care system. They reflect on the key themes that emerged in our conversations about The System Journey, including team support, treating the whole person, proactive families and support for GPs and offer their own insights for system improvement.
Throughout a person’s journey through the health care system, they will come into contact with multiple health care providers across multiple sectors. In this episode we discuss how important it is that everyone is coordinated and integrated for a team based approach to care.
Jim and Jacobi talked about why the team approach is comforting to dementia patients and how essential it is that the caregiver is considered a part of the team, as they are the only common thread that travels through the health care system with the patient. Caregivers play a crucial role in the health care system and are often overlooked.
They discuss building care plans by keeping the person living with dementia and their care partner at the centre of them, by recognizing their goals and preferences, to maintain quality of life; a holistic approach to care, considering the medical aspects but also the social and psychological aspects as well.
Within these care plans, it can be a balancing act for the caregiver to learn how to communicate on behalf of the person living dementia, within the tight time limits that our primary care system has, without speaking for them. Jim shares his experience with this when his mother had Alzheimer’s and his tips for doing so effectively.
Remember: Diagnosis is only step one.
View Jim’s Story on YouTube at the link below:
https://www.youtube.com/watch?v=Lzd2aYpuKdk
Dr. Ajantha Jayabarathan practices family medicine in Halifax NS. By adopting a shared care framework from mental health, Ajantha describes how she provides family-oriented dementia care in collaboration with other service providers. We get a glimpse of the comprehensive approach Ajantha strives for, though it is not always easy as service access or availability is often uneven. We also hear about the relationship that can build over time between a family physician and her patients, including their families.
Born and raised in India, Dr. A.J. (as most people call her) immigrated with her family to Canada where she went on to study medicine at Western University in London ON. She has now practiced family medicine for thirty years and has a clinic called Coral Shared-Care Health Centre in Halifax NS, where she focused on collaborative care and relationship building.
She shares many examples of the benefits of these collaborations and relationships, from patient safety to family involvement to the education of other health care professionals.
Dr. Jayabarathan talks about the different partnerships she has established with First Link coordinators, pharmacists, physiotherapists, mental health providers, long-term care staff, etc., and just how important they are in providing the best possible care to patients with dementia.
Leanne Lawrence and Jean Daku live in rural Saskatchewan where Leanne’s mother, Marjory lived her whole life. We learn how Jean, a nurse practitioner, championed a memory clinic practice model within the Kipling Primary Care Centre and she and others supported Leanne and her mom as dementia developed. Enabling residents of rural areas to receive high-quality service is an important contribution to these types of clinics. Often services exist but the clinic helps organize and coordinate them and to advocate when gaps emerge.
Leanne explains some of the challenges of having to travel long distances for health care when dealing with dementia and how negatively that can impact the person living with it, such as confusion, agitation, and a general worsening of their condition. This really highlights the need for access to services in rural areas.
Noticing the major gap in care, Jean started working with the RaDAR group from Saskatoon to bring in more education and ways of dealing with dementia into small rural communities. Her multidisciplinary memory clinic has a team-based approach, with physicians, home care nurses, physical therapists, occupational therapists, social workers, and the Alzheimer Society First Link coordinator.
Both guests emphasize how critical communication and the coordination of care is for people living with dementia and for their care partners, to enhance the quality of life and how building a community framework is so beneficial. They also speak to how helpful social, mental, and physical stimulation is for the patient is as well.
For more information on RaDAR visit: https://cchsa-ccssma.usask.ca/ruraldementiacare/index.php
Dementia, Stigma and Action – Human Rights
In this episode of our series on Human Rights and Dementia we listen to 3 women who are active in the struggle to overcome the stigma experienced by so many people with dementia and that often extends to their families. Alisa Grigorich reads an article that she and her colleague Pia Kontos recently wrote on “COVID-19, stigma- and the scandalous neglect of people living with dementia”. Phyllis Fehr, a dementia activist joins Pia in conversation about her experience of stigma and is working to combat it. Pia discusses a new project Reimaging Dementia that will mobilize people to pursue goals identified by individuals with dementia to improve their social and cultural well-being.
In Part 1, we heard from Rachel about her Mom’s growing dementia and of her need to move to long term care, despite her father Chris’ reluctance. We were also introduced to Monica and Cara who work at a MINT Memory Clinic supporting families like Rachel’s. Rachel reflects on her experience as a daughter of parents with dementia and some of her lessons learned while Monica and Cara discuss what their practice goals and challenges are.
In Part 2 of this episode, Rachel relates some stories and struggles she has faced with knowing when to intervene and where to turn to, when witnessing “micro incidents”, as she describes them, by her father that was otherwise going undetected by the family doctor.
An in-depth conversation follows on the topic of the challenging transitions that the children and family of dementia patients have to facilitate, from driving to independent living. This highlights the services and supports that the MINT Memory Clinic provides and the importance of the therapeutic relationships that they develop.
They also discuss how crucial the care of the caregivers is and how to support them through their caregiving journey with compassion, communication, and collaboration.
For more information about MINT Memory Clinics, go to: https://mintmemory.ca/
Rachel Hofstetter’s parents, Chris and Dorothy Quick are living with dementia. Before they moved into the same long term care home at different times, Rachel recounts some of the challenges and transitions that they experienced. These challenges include decision-making, driving, admission into long-term care, and working with multiple providers. Rachel received support from a MINT Memory Clinic. Monica Wood and Cara Dowhaniuk work at the memory clinic and along with Rachel, they describe how they support families like Rachel’s and collaborate with other primary care providers.
Having two parents at different stages of cognitive decline can be overwhelming, as Rachel explains, especially when it comes to understanding your role and having to navigate new power-struggles, regarding resistance to relinquish their autonomy and privacy.
She tells us of a pivotal moment, amidst concerns of her father’s fitness to be her mother’s caregiver countered with her parent’s desire to guard their independence and life together, when a wrenching incident changes everything.
Rachel then talks about how she often felt lost or “bounced around” within the system but found great support at the MINT Memory Clinic.
Monica discusses the limitations to care in every healthcare model, particularly with regards to general practitioners and their lack of time or scope within their practice to fully investigate a complex disease like dementia. She then describes how MINT Memory Clinics are specifically designed to serve and assess these patients more fully.
More information about the MINT Memory Clinics in Ontario can be found at: https://mintmemory.ca/
Learning what helps are available and how to use them is a major issue for people with dementia and care partners. One of the major issues in Primary Care is time. This is especially a challenge in caring for a patient with dementia. Michelle Janisse, MSW is a First Link Navigator who describes her role in working with families to navigate the system and with Primary Care to bolster their capacity to support people living with dementia. As a service of the Alzheimer Society in many locations, First Link helps connect people to education and community resources. Listen to Michelle as she describes her role in helping people and health providers in Chatham-Kent, a mixed urban-rural area of southwestern Ontario.
Michelle discusses the importance of First Link in optimizing and coordinating all of the different services and supports available to people living with dementia and their families, from pre-diagnoses through the continuum of the journey, even without a doctor’s referral.
She also talks about the difficulty some face of simply receiving an initial Alzheimer’s or dementia diagnosis, due to the hesitation or ability of a primary care provider or the lack of one entirely. This highlights the need for a collaborative approach between health care professionals, community partners, and families.
For more information about the Alzheimer Society First Link program, go to: https://alzheimer.ca/en/help-support/programs-services/first-link
Ron Roberts was diagnosed with Alzheimer's Disease 5 years ago. Except for being told he had AD and could no longer drive, not much more information was provided to him. After doing his own research on how to maintain his health, among other things, Ron enrolled in the BA program at Kings College at Western University and plans to get his degree in 2021.
Ron also speaks to medical and social work students at Western and shares some of his message to students. As a Metis, Ron also briefly touches upon the experience of indigenous people. His core message is about the importance of listening and encouragement in a therapeutic conversation.
Growing up in a large family in Halifax, Ron dropped out of high school in the 1940s in favor of earning a living. At 16 he interviewed for a job in broadcasting and not only got the job but started the very next day, thus beginning a decades-long career in journalism. However, he always had a “bucket wish” to attend university, something that was still considered “elitist” in his younger years and has found the combination of intellectual and social stimulation very helpful in managing the progress of his dementia. He is also a big proponent of physical activity to the same end.
Ron advocates for evidenced-based strategies for living with dementia by utilizing the experience and expertise of those doing so, greater access to information on dementia at the first medical point of contact and the need for more time and consideration to be paid to aging patients and any cultural sensitivities that may be present.
By Us For Us is a series of booklets prepared by people living with dementia and care partners and provide useful guidance on different aspects of dementia from a lived experience perspective.
https://the-ria.ca/wp-content/uploads/2018/11/BUFU-Guide-Before-Early-Diagnosis_AODA.pdf
Ngozi Iroanyah recounts some of her father, Felix’s, experience with dementia, and how she as a daughter, along with her stepmother Gean and brothers Azu and Chuck, are supporting him. Ngozi shares some of her “techniques” in trying to keep connected to various health care providers and the family and to manage transitions that they all confront, as her dad’s dementia proceeds. Cultural awareness and communication as well as early action are all important considerations.
Eighty-one-year-old Felix, who was diagnosed much to his and his family’s shock with dementia in 2008, immigrated to Canada in 1972 from Nigeria in West Africa by way of the U.K. Being in health care herself, Ngozi, has been able to help facilitate the coordination and maintenance of care with all of the different, “siloed” care partners within their care team, by keeping a flow of information between them all as well as her family.
She discusses the importance of this connectivity and filling in the knowledge gaps with care providers about specific cultural and personal information, to help dementia patients feel comfortable, safe, and happy. She talks about the need for systems and training to support the support staff in better caring for their patients in this way.
Ngozi also touches upon different cultural perceptions about aging and dementia and the need to have more awareness regarding elder care planning and caregiver support in racialized communities.
The Alzheimer Society of Canada has a tool available for download on their website called All About Me, a booklet that provides specific information about a dementia patient to their care providers.
A sample booklet can be found here:
https://archive.alzheimer.ca/sites/default/files/files/national/core-lit-brochures/all-about-me_booklet.pdf
In the last episode of our series on Human Rights and Dementia, listeners discuss the various Calls to Action issues by our interviewees. Mary Beth Wighton, a leading dementia activist and co-chair of Dementia Advocacy Canada and Jillian McConnel of the brainXchange co-host the discussion.
In our third episode on this theme, we take a more global view of Human Rights and Dementia. Stefanie Freel is a Canadian who is a consultant with the World Health Organization and lives in The Netherlands. Stefanie outlines work at the UN and WHO to codify and promote human rights for persons with mental disabilities, including dementia.
We then speak with Kate Swaffer who leads Dementia Alliance International whichis a worldwide group of people with dementia. Kate has secured a place at the table for people with dementia at several levels of dementia policy work.
n
In this second episode on Human Rights and Dementia, we talk with Christine Telker a dementia activist from British Columbia and a member of Dementia Alliance International, a worldwide network of people with dementia. Jane Barratt leads the International Federation on Ageing and is working to advance a Convention on the Rights of Older Persons. Dr. Deb O’Connor teaches at UBC and helps us understand how human rights can be applied even when dementia has progressed. All three have some suggestions about what we can do to promote human rights and dementia. As well, mention is made of our Town Hall to be held June 29. More info can be found at dementiadialogue.ca.
This episode outlines the connection between human rights and dementia, with particular attention to the impact of COVID-19 on long term care. Mario is a dementia activist who is a co-creator of a Canadian Charter of Rights for Canadians with Dementia for the Alzheimer Society of Canada. Laura Tamblyn-Watts of CanAge is a lawyer and leading advocate for older people and Margaret Gillis leads the International Longevity Centre, Ottawa and is working to have Canada adopt the UN Convention on the Rights of Older Persons. Each gives their own advice on what listeners can do to promote human rights for people with dementia.
Episode 6: Too often people can drift away, but Penny Sather has not. As a member of a large extended family, Penny has helped the family out as they supported their mother and mother-in-law and now Penny is doing what she can to support her brother-in-law, Al.
Episode 5: Susan and her husband were looking forward to the perfect retirement until life interrupted. Susan describes how she reframed her experience and found ways to affirm her husband’s strengths, even as they diminished. In the process, she found new strengths within herself.
Episode 4: Louise Milligan’s husband Gord was diagnosed with dementia while still teaching and raising two daughters. Louise speaks eloquently about the challenges their family faced and how she was able to use community resources to help.
Episode 3: Roxanne Varey has dementia and has become an advocate for creating more opportunities for people with dementia in the workplace. Roxanne has written poetry to help her understand and express some of her inner experience.
Episode 1: Our series is introduced by a panel of 4 people talking about the importance of “Pumping Up the Volume” so that people with lived experience will have their voices heard. Panellists include advocates for people with dementia and care partners, our research associate and a dementia educator.
Episode 2 of the Changing and Adapting series features an interview with Guy Chadsey whose spouse Alison has dementia. Guy talks about some of the early indications of Alison’s condition, his changing relationship with Alison and his effort to live positively.