Dementia Dialogue

In Part 1, we heard from Rachel about her Mom’s growing dementia and of her need to move to long term care, despite her father Chris’ reluctance. We were also introduced to Monica and Cara who work at a MINT Memory Clinic supporting families like Rachel’s. Rachel reflects on her experience as a daughter of parents with dementia and some of her lessons learned while Monica and Cara discuss what their practice goals and challenges are.

In Part 2 of this episode, Rachel relates some stories and struggles she has faced with knowing when to intervene and where to turn to, when witnessing “micro incidents”, as she describes them, by her father that was otherwise going undetected by the family doctor.

An in-depth conversation follows on the topic of the challenging transitions that the children and family of dementia patients have to facilitate, from driving to independent living. This highlights the services and supports that the MINT Memory Clinic provides and the importance of the therapeutic relationships that they develop.

They also discuss how crucial the care of the caregivers is and how to support them through their caregiving journey with compassion, communication, and collaboration.

For more information about MINT Memory Clinics, go to: https://mintmemory.ca/ 

Rachel Hofstetter’s parents, Chris and Dorothy Quick are living with dementia. Before they moved into the same long term care home at different times, Rachel recounts some of the challenges and transitions that they experienced. These challenges include decision-making, driving, admission into long-term care, and working with multiple providers. Rachel received support from a MINT Memory Clinic. Monica Wood and Cara Dowhaniuk work at the memory clinic and along with Rachel, they describe how they support families like Rachel’s and collaborate with other primary care providers.

Having two parents at different stages of cognitive decline can be overwhelming, as Rachel explains, especially when it comes to understanding your role and having to navigate new power-struggles, regarding resistance to relinquish their autonomy and privacy.

She tells us of a pivotal moment, amidst concerns of her father’s fitness to be her mother’s caregiver countered with her parent’s desire to guard their independence and life together, when a wrenching incident changes everything.

Rachel then talks about how she often felt lost or “bounced around” within the system but found great support at the MINT Memory Clinic.

Monica discusses the limitations to care in every healthcare model, particularly with regards to general practitioners and their lack of time or scope within their practice to fully investigate a complex disease like dementia. She then describes how MINT Memory Clinics are specifically designed to serve and assess these patients more fully.

More information about the MINT Memory Clinics in Ontario can be found at: https://mintmemory.ca/ 

​​Learning what helps are available and how to use them is a major issue for people with dementia and care partners. One of the major issues in Primary Care is time. This is especially a challenge in caring for a patient with dementia. Michelle Janisse, MSW is a First Link Navigator who describes her role in working with families to navigate the system and with Primary Care to bolster their capacity to support people living with dementia. As a service of the Alzheimer Society in many locations, First Link helps connect people to education and community resources. Listen to Michelle as she describes her role in helping people and health providers in Chatham-Kent, a mixed urban-rural area of southwestern Ontario.

Michelle discusses the importance of First Link in optimizing and coordinating all of the different services and supports available to people living with dementia and their families, from pre-diagnoses through the continuum of the journey, even without a doctor’s referral.

She also talks about the difficulty some face of simply receiving an initial Alzheimer’s or dementia diagnosis, due to the hesitation or ability of a primary care provider or the lack of one entirely. This highlights the need for a collaborative approach between health care professionals, community partners, and families.

For more information about the Alzheimer Society First Link program, go to: https://alzheimer.ca/en/help-support/programs-services/first-link

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.

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.

https://the-ria.ca/wp-content/uploads/2018/11/BUFU-Guide-Before-Early-Diagnosis_AODA.pdf 

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:

https://archive.alzheimer.ca/sites/default/files/files/national/core-lit-brochures/all-about-me_booklet.pdf 

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.  

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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 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.

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.

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.