Dementia Dialogue

In this second of 2 episodes which marks The National Day of Truth and Reconciliation,  Lisa Loiselle talks with Laura Alfaro and Danielle Alcock who both work in Indigenous health and were involved in the Circle of Care, which is a project that addresses the needs of Indigenous caregivers of people living with dementia. Laura was the project officer at the Native Women’s Association of Canada leading the project and Danielle facilitated the talking circles during the program. Danielle has also been a caregiver to her father for the past ten years.

In part 1, Laura and Danielle laid the groundwork for understanding dementia and the caregiving role from an Indigenous perspective.

In part 2, Lisa speaks with Laura and Danielle more specifically about the Circle of Care project, the process, purpose, outcomes and challenges.

   Please go to nwac.ca/assets-knowledge-centre/30-March-CIRCLE_OF_CARE_TOOLKIT.pdf to view and download the toolkit. You may also be interested in reading other material on dementia on the NWAC website such as nwac.ca/assets-knowledge-centre/NWAC.Eng.Bk.Dementia.Stigma.pdf

Laura Alfaro was the project lead for the Native Women’s Association of Canada’s Circle of Care project. She is a researcher with extensive experience in post-secondary, community-based, non-profit, and cross-cultural settings.

This episode is a reprise of Episode #41 and features a conversation Lisa Loiselle had with Mike Belleville and Mary Fridley of the  Reimagine Dementia - A Creative Coalition for Justice 

    The reprise honours the launch of its "Taking it to the Streets" Campaign to 

“Shatter the silence about dementia

Creatively transform the journey of dementia for everyone

Build a world (and systems of care) in which diagnosis is not the end of life, but a starting point for joy, humanity, growth and new possibilities"

To learn more about the Coalition go to:

https://www.reimaginingdementia.com/

To learn more about the campaign, go to:

https://www.reimaginingdementia.com/blog/prtakingstreets

In this 2-part podcast Lisa Loiselle talks with Laura Alfaro and Danielle Alcock who  both work in Indigenous health and were involved in the Circle of Care, which is a project that addresses the needs of Indigenous caregivers of people living with dementia. Laura was the project officer at the Native Women’s Association of Canada leading the project and Danielle facilitated the talking circles during the program. Danielle has also been a caregiver to her father for the past ten years.

In part 1, Laura and Danielle lay the groundwork for understanding dementia and the caregiving role from an Indigenous perspective.

In part 2, Lisa speaks with Laura and Danielle more specifically about the Circle of Care project, the process, purpose, outcomes and challenges.

   Please go to nwac.ca/assets-knowledge-centre/30-March-CIRCLE_OF_CARE_TOOLKIT.pdf to view and download the toolkit. You may also be interested in reading other material on dementia on the NWAC website such as nwac.ca/assets-knowledge-centre/NWAC.Eng.Bk.Dementia.Stigma.pdf

Laura Alfaro was the project lead for the Native Women’s Association of Canada’s Circle of Care project. She is a researcher with extensive experience in post-secondary, community-based, non-profit, and cross-cultural settings.

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 [email protected]

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/

Arne Stinchcombe chats with researchers doing work with lesbian, gay, bisexual, transgender, queer, and Two-Spirit (LGBTQ2S+) 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/

Resources for this episode can be found under the following sections on our resource page: LGBTQ2S+

Pour ce dernier épisode de notre deuxième saison, nous avons eu une conversation fascinante sur les nouveaux modèles de résidences pour aînés vivant avec un trouble neurocognitif majeur avec le professeur Philippe Voyer.

Comment est-ce qu’on peut repenser nos modèles de résidences pour les rendre plus accueillantes pour les aînés atteints de trouble de mémoire et leurs familles? Quels sont les détails auxquels il faut penser lors de la planification des différentes pièces qui composent une résidence pour aînés vivant avec un trouble neurocognitifs majeur? Quelle est la satisfaction du personnel soignant qui travaille dans ces nouveaux milieux?

C’est ce que nous apprenons dans le balado qui suit!

Philippe Voyer, inf., Ph.D. est professeur titulaire et Vice-doyen aux études de premier cycle et à la formation continue de la Faculté des sciences infirmières de l’Université Laval. Dans le cadre de ses fonctions, monsieur Voyer s’implique dans l’enseignement et la formation continue, la recherche et la pratique clinique. Il est l’auteur de plusieurs livres utilisés au Québec et en Europe qui se sont mérités de prestigieux prix dont le Prix du ministre de l’Éducation. Il est le chercheur principal ayant créé l’outil RADAR permettant de détecter les signes du delirium (outil maintenant disponible en 7 langues (https://www.philippevoyer.org/radar-international). Il a aussi été l’expert mandaté par le ministère de la Santé et des services sociaux dans un projet vitrine visant à transformer des CHSLD classiques en CHSLD Alzheimer. Il était aussi membre du comité mandaté par le MSSS pour produire le Plan Alzheimer et a co-présidé la création des lignes directrices québécoises sur la prise en charge des SCPD. Il est conseiller aussi pour le ministère des Aînés et des proches aidants pour la réalisation des Maisons des aînés. Enfin, il a participé à la création des Maisons l’étincelle et Humanitae qui sont des milieux de vie pour la clientèle vivant avec la malade d'Alzheimer. Ces milieux novateurs ont permis de tester diverses technologies visant le bien-être et la sécurité des résidents. Pour plus de détails :  https://www.philippevoyer.org/biographie

In this episode, Pat Shanahan speaks with Barbara Machalik and Mary Connell. Barbara is the Executive Director of Academics, Community Relations and Programming at the Long Term Care homes operated by the Rekai Centres at Wellesley Central Place and Sherbourne Place in downtown Toronto. Barbara tells us about the planning and launch of the Rainbow Wing at their Wellesley location in 2022. The Wing is a pod of 25 resident rooms for members of the 2SLGBTQ communities but contains common space available to all the residents of the facility who are allies or are also members of the 2SLGBTQ communities.

Mary is a consulting nurse who specializes in the area of emotion-based care and client centred care especially for those experiencing dementia. The Rekai Centres have been working with Mary to train staff and assist the staff developing care approaches that respond to the individual residents, their lives and familiar activities to reduce anxiety.  Mary shares examples and stories of how emotion-based care is being used to care for members of the 2SLGBTQ communities who are experiencing dementia.

The following resources can be read/viewed found through links  www.rekaicentres.com

Many LGBTQ seniors entering long-term care hide their identities. The ‘Rainbow Wing’ aims to change that | The Star

Long-term care home unveils 'Rainbow Wing' for LGBTQ2 residents in Toronto | CBC News

Is this the future of queer elder care? | Xtra Magazine

Other Cities Have Housing for Queer Seniors. Why Not Vancouver? | The Tyee

Rainbows to welcome everyone at Rekai Centre Toronto - YouTube

Comment aider un proche atteint d’un trouble neurocognitif majeur quand on habite à plus de 5,000 kilomètres dans une région éloignée des grands centres urbains? Pour en apprendre plus sur cette problématique, j’ai interviewé deux Yukonnais : Sandra St-Laurent et Paul Davis.

Sandra est Québécoise de naissance et Franco-yukonnaise d’adoption. Elle est arrivée au Yukon, il y a plus de 25 ans, et est tombée en amour avec la région et ses habitants. Sandra a été proche aidante à deux reprises. La première fois, c’était il y a environ 17 ans, lorsque son père a reçu un diagnostic de cancer, et plus récemment pour sa mère qui est décédée en juillet 2022 de la maladie d’Alzheimer.

Paul Davis, quant à lui, s’est établi au Yukon en 1995. Après plusieurs années dans la fonction publique et l’enseignement, il se dévoue maintenant à la réalisation de courts métrages. Son dernier film, Le Loon Ranger des huards, a été présenté récemment au Dawson City International Short Film Festival ainsi qu’au Festival international du Film francophone de Toronto. Bien qu’il ait grandi dans une famille anglophone, Paul porte un grand amour pour la langue française qu’il étudie depuis sa jeunesse. Malheureusement, Paul et moi avons eu quelques problèmes techniques lors de notre conversation qui ont grandement affecté la qualité sonore de l’entrevue.

Sandra St-Laurent est la Directrice du Partenariat communauté en santé au Yukon.

Gestionnaire et artiste en creation littéraire, elle aime mettre à profit ses connaissances dans des milieux dynamiques favorisant la créativité et se démarquant par l’excellence et le souci d'intégrer les meilleures pratiques et l'innovation.

Paul Davis est un artiste en arts médiatiques qui habite à Whitehorse au Yukon. Vous pouvez le rencontrer à pied, à vélo, et en canot!

After listening to a group of women living with dementia talk about their group, Dementia Sisterhood, if you are interested, contact Dr. Elaine Wiersma at [email protected]. They meet virtually via Zoom to share their lives, support one another and derive encouragement from the solidarity they experience  

 You may want to check out our series on Women & Dementia https://www.dementiadialogue.ca/women--dementia and listen to other episodes on this theme and check out the resources below

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/

Native de l’Abitibi-Témiscamingue dans la province de Québec, Annie Bourret habite en Colombie-Britannique depuis près de 30 ans. 

Au printemps 2019, la mère d’Annie, l’autrice québécoise Anne-Michèle Lévesque, subit un AVC qui la laisse avec des séquelles : des troubles de mémoire, perte de langage, fatigue mentale et physique. Elle quitte donc le Québec et s’installe chez sa fille à Ashcroft en Colombie-Britannique. Son état de santé se détériore rapidement, les problèmes s’accumulent; si bien qu’en juin 2020, Mme Lévesque demande l’aide médicale à mourir. Annie doit maintenant accompagner sa mère dans ce processus.

Ensemble, nous avons parlé de son expérience en tant que proche aidante et du chemin qu'elle a parcouru avec sa mère à partir du moment où cette dernière a demandé l'aide médicale à mourir.

Lien vers la Biographie et photo d’Annie