Dementia Dialogue

Ruth and Maggie’s Story

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/

Dementia and Indigenous Communities Part 1: A cultural perspective of dementia and dementia care

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.

 Danielle Alcock  spirit name is 'Shining Water') is a member of Mnjikaning First Nation whosePhD at focused on storytelling of Indigenous female caregivers for a loved one with memory loss. Danielle was a front line provider in Indigenous health working with clients across the lifespan. and continues to work in Indigenous health focused on improving culturally safe care and supporting primary care in Southwestern Ontario. 

Taking it to the Streets: Reimagining Dementia

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

 

Dementia and Indigenous Communities Part 2: A cultural perspective of dementia and dementia care

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.

 Danielle Alcock  spirit name is 'Shining Water') is a member of Mnjikaning First Nation whosePhD at focused on storytelling of Indigenous female caregivers for a loved one with memory loss. Danielle was a front line provider in Indigenous health working with clients across the lifespan. and continues to work in Indigenous health focused on improving culturally safe care and supporting primary care in Southwestern Ontario. 

Demystifying Dying: Stories from a Death Doula

In this episode, the first in a new series on Dying and Dementia, guest host Jillian McConnell, Knowledge Translation Specialist with the brainXchange, sits down with Anne Marie Stoneburgh a Death Doula. Many people avoid this topic in our death-averse society and yet we are all “living while we are dying”. Annie explains what a Death Doula, or End-of-Life Care Facilitator is and the role they might play in supporting individuals and families through the dying process. The stories she shares highlight the importance of having conversations early and often about dying. By talking about our wishes with the people in our lives we can demystify dying and support death experiences that honour those wishes.  

Dying & Dementia: Let’s Talk About It

We continue our series on Dying and Dementia, with Ron Posno. Ron lives with Alzheimer’s Disease and Vascular dementia. He shares his experience of living with dementia, why he thinks having conversations about our own death is important and what this means for him as someone living with dementia. Ron has been an advocate of access to Medical Assistance in Dying (MAID) for people living with dementia. We talk about what a highly personal decision this is and why, for Ron, his wish is to access MAID when his disease progresses, if it is available to him.  

Vivre le moment present et profiter de la vie

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.

Voir Balado 1 - Biographies et photos

L’approche par le plaisir

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.cao 

Si vous êtes un organisme du réseau de la santé, veuillez contacter Sandra par courriel à : SHARRISS@uottawa.ca

Voir Saison 3 Episode 2-Biographies et photos

 

Les defis de la proche aidance a distance

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.

Conversations That Matter: Talking About Dying and Dementia

In the third and final podcast of our series on Dying and Dementia, we met with Dr. Kathy Kortes-Miller, MSW, PhD., author of Talking About Death Won’t Kill You.  Kathy is an associate professor in the School of Social Work and the Director of the Centre for Education and Research on Aging and Health at Lakehead University, Thunder Bay, Ontario Canada. She is the Lakehead University Research Chair on Aging and End of Life and is committed to improving the care provided at the bedside and in the community. She has a passion for palliative care and improving end-of-life care for all.  During this episode, we discuss the importance of having end-of-life conversations, death literacy, and what to consider when planning for end-of-life.