July 18, 2020
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:
July 6, 2020
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.
June 22, 2020
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.
June 7, 2020
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.
May 25, 2020
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.
June 11, 2018
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.
June 4, 2018
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.
May 28, 2018
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.
May 22, 2018
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.
May 22, 2018
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.