Interviews with persons with lived experience of dementia to promote understanding and insight. Visit www.dementiadialogue.ca for more information and resources.
Changing Roles in Dementia Research: From subjects to participants: Season 3, Episode 22
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
Absolutely Yes! Dementia and Human Rights
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.
Get Real! Dementia, Gender, Age
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.
Town Hall Discussion on Human Rights and Dementia
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.
Culture and Communication - The System Journey
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:
The Healing Conversation
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.
This is an excellent podcast
This is a very good podcast that has a lot of interesting things to say about the lived experience of dementia, an increasingly urgent topic in our aging society. Well done all involved.