Dementia Dialogue dementiadialogue

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.

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.  

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    

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.

 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.

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.