Dementia Dialogue

Promoting the Voice of Lived Experience: A Panel Discussion

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.

Reinventing Relationships: An Interview with Guy Chadsey

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.

Work, Life : Adapting to Change

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.

Marshalling resources within oneself and within community

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. 

Reflection, Reframing and Reimagining

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.

Relationships and Reaching Out

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. 

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.

Include Us! Human Rights and Dementia

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.

 

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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.