Dementia Dialogue

    Jim Berry and Bill Heibein are members of the North West Dementia Working Group (the Group) that was formed in 2014 by people with dementia and care partners to work to promote the change that they want to see happen to improve the lives of people living with dementia. The group is small, about 20, but mighty in its ambitions and accomplishments.

   Jim and Bill share some of their motivations for belonging to the group and describe some of their accomplishments. Two of the ones of which they are most proud is a conference entitled Living Well with Dementia convened in Thunder Bay in 20xx and repeated in Dryden. As well, the group has started the Dementia Café in Thunder Bay that is entering its third year. Both projects have attracted volunteers beyond the core group of 20. The Café and the Zoom.

  Jim and Bill also discuss an action research project that they are involved with, called Building Capacity. They have partnered with a seniors agency network in Vancouver along with researchers at Lakehead University and UBC. Bill and Jim describe their approach as “bottom-up” and the Vancouver group as more “top-down”. The idea is to see how the bottom-up group can influence community organizations to better serve people with dementia and how the top-down group can learn to involve people with dementia in program development.

  Jim and Bill both feel groups like theirs not only offer opportunities for people to make a difference but also to benefit personally by becoming involved.

   Dementia Cafe can be contacted at:  [email protected]

The Dementia Cafe Facebook page is: https://www.facebook.com/Dementia-Cafe-A-Place-to-Belong-2611577718917565/

The NWDWG Facebook page is : https://www.facebook.com/North-West-Dementia-Working-Group-109779593941900/ and their Email is  [email protected]

For more information about the Building Capacity project  https://crpd.ubc.ca/building-capacity-project/

Building Capacity Workshop Report - 2020  https://afa49033-9fa2-44a2-850f-d2a38a8ac3e2.filesusr.com/ugd/f7b74e_4fe6378f211c400fb2f36713f6576277.pdf

    This is the first in a multi-part series on Dementia Friendly Communities. In it, Phyllis Fehr, a member of our Editorial Board and also a member of the Dementia Friendly Communities project of the Hamilton Council on Aging hosts a discussion with Debbie Keay a fellow member of the Hamilton Ontario Project and Roger Marple who is active in a Dementia Friendly project in  Calgary, Alberta.

    These projects are different from each other but the motivations behind these 3 people, all of whom have dementia, share many similarities. Each person is actively living a life that they thought was lost to them when they were first diagnosed with dementia. Through their own research and reaching out to groups like the Alzheimer Society, each has learned how to adjust to having dementia and to live a full and meaningful life. They want to help other people living with dementia to avoid often self-limiting behavior and to reduce the stigma associated with having dementia. Dementia Friendly Communities is one way. 

  The Dementia Friendly Community movement is worldwide and is growing in Canada. Many Alzheimer Societies and other community organizations are involved. You can find out more about Roger and Phyllis by searching their names on the internet. Media articles about Phyllis and Debbie’s project include:

• https://www.thespec.com/opinion/contributors/2020/11/03/survey-will-help-build-dementia-friendly-cities.html#:~:text=Currently%2C%20the%20Alzheimer%20Society%20estimates%20that%20there%20are,and%20executive%20and%20physical%20functioning%2C%20among%20other%20symptoms.

Roger's videos  can be found at:

https://www.dementianetworkcalgary.ca

This webpage links to each of the partner province’s DFC sites, which contain some great resources:

 https://alzheimer.ca/en/take-action/become-dementia-friendly/dementia-friendly-canada

• B.C.: https://alzheimer.ca/bc/en/take-action/dementia-friendly-communities

• Ontario: https://alzheimer.ca/on/en/take-action/become-dementia-friendly/dementia-friendly-communities-ontario

Reflection, Reframing and Reimagining (repeat of Episode 4, Season 1)

Susan Bithrey and her husband Reg 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.

As a retirement gift, Susan was given a journal to record their many “golden year’s” adventures that they had planned together. Instead it sat empty until a year before Reg’s Alzheimer’s diagnosis when she started to keep an account of her concerns about his memory struggles. It became a five-volume tool for documenting the disease and for reflective learning for her and she generously shares her very poignant first entry with us.

Susan honestly reflects on having to learn on the job of becoming a caregiver; figuring out how and when to roll up her sleeves and jump in and when to have Reg speak for himself, make his own decisions and recognize his ability to do so. She also bravely shares some stories surrounding the heartbreaking personality changes that her husband went through and recommends grief counseling for caregivers in this situation.

Her humble and wise words to conclude this episode will resonate with anyone else encountering the same circumstances.

Resources that may be helpful to listeners of this episode include: 

Shifting the Focus – a quick guide to behaviours associated with dementia and some tips on responses. https://brainxchange.ca/Public/Files/Behaviour/ShiftingFocusBooklet.aspx

In Ontario, there is an extensive network related to behavioural supports that includes services, as well as information resources. They can be accessed at https://www.behaviouralsupportsontario.ca

The Research Institute on Aging at the University of Waterloo publishes a series –By Us, For Us which are information booklets created by people with lived experience. These can be found at https://the-ria.ca/resources/by-us-for-us-guides/

Ron Posno is a retired educator living with mild cognitive impairment. He shares with us some of his experiences and talks about coming to terms with his condition and continuing to live a full life with many great examples and tips.

Ron became aware of some cognitive struggles he was having and became worried. This led him to visit his doctor whereupon describing his concerns, she administered the Montreal Cognitive Assessment (MoCA) which he passed at that time. A year later, his struggles persisted so he insisted on a referral to a specialist where he received his diagnosis. This was a relief for Ron because his philosophy is to accept, adapt and plan.

He stresses the importance of accepting a dementia diagnosis so that you can learn how to adapt and live happily, productively and purposefully. He directs others living with a diagnosis to find the people and organizations that are out there, eager to support them because support will be needed and to plan ahead while you are still able to.

As he says, “When you see the clouds outside, you know the rain's going to fall so you carry the umbrella, don't you?”

Ron urges people to talk about their dementia and to share their experiences as this will help eliminate the shame and stigma that can come with it. His positive and practical attitude in the face of his illness is very inspirational.

In this episode, Ron talks about "Learning the Ropes" sessions for people living with mild cognitive impairment at the Alzheimer Society. More information on that program can be found here:

https://alzheimer.ca/huroncounty/en/learning-ropes-living-mcir

   Bill C-7 proposes certain changes to the legislation on medical assistance in dying. In this episode, Dr. Mariette Brennan, a professor in Constitutional Law and Health Policy at the Bora Laskin Law School, Lakehead University, outlines the origins of this legislation in Canada, the current legislation and the proposed changes in Bill C-7.

     When the current law (Bill C-14) was passed in 2016, 3 outstanding issues that remained to be addressed by Parliament, namely mental illness, mature minors and advance directives, were referred to the Council of Canadian Academies (CCA) for further study and advice. One of these matters, mental illness, is addressed in BillC-7 but mature minors and advance directives will be further examined by Parliament.

   While Bill C-7 excludes mental illness as an eligible disease, it expands eligibility for persons experiencing intolerable suffering but whose death is not foreseeable.  Safeguards are modified by simplifying access in one instance where there is reasonable foreseeable natural death and by adding safeguards with respect to intolerable suffering.

     Our resource page contains material on MAID from sources such as the Department of Justice https://canada.justice.gc.ca/eng/csj-sjc/pl/ad-am/c7/p1.html .Dementia Advocacy Canada’s Statement on MAID https://dementiacanada.com/resources and that of the Alzheimer Society of Canada  https://alzheimer.ca/en/help-support/im-caring-person-living-dementia/end-life-care/medical-assistance-dying and a CBC video of a "town hall' meeting on MAIDhttps://www.youtube.com/watch?v=L_2EDiuzr58

   You can become involved by contacting your MP and expressing your thoughts and also by contacting one of many non-governmental groups participating in the debate.

In this episode, I interview Christine Thelker, a dementia activist from British Columbia and author of For This I am Grateful: Living with Dementia. Christine’s book evolved from a personal journal to a blog and eventually to a book that was published in June 2020. Christine is 60 years old and has experienced symptoms of dementia arising from cardiovascular disease for 5 years. In our discussion, we explored the themes of gratitude and grief, taking care of yourself, and advocacy. We also talk about Christine’s decision to “go public” with her writing and the close link this decision had, with her becoming involved with dementia advocacy, especially through Dementia Alliance International.

   Christine is also an artist, having designed her own book cover, but did not paint or draw until after being diagnosed. We talked about how through her writing, painting, blogging and speaking,  art contributes to her ability to live with and through her dementia. Our interview is the first in a series that will focus on arts and dementia. The foreword to her book is written by Kate Swaffer, Chairperson of Dementia Alliance International.

   You can buy Christine’s book at your local bookseller, Chapters/ indigo, or (dare I say it) Amazon. The ISBN # is 978-1-6457569-9-6. It is published by Austin Macauley. You can also follow Christine’s blog https://www.facebook.com/110344063740906

   A free copy will be given to a name drawn at random from listeners who write to [email protected]. The name will be drawn on December 1.

Jim Mann, a dementia activist from BC and Jacobi Elliott, PhD a researcher with the Geriatric Health Systems Research Group at the University of Waterloo both share a passion for improving the experience that Canadians have in our health care system. They reflect on the key themes that emerged in our conversations about The System Journey, including team support, treating the whole person, proactive families and support for GPs and offer their own insights for system improvement.

Throughout a person’s journey through the health care system, they will come into contact with multiple health care providers across multiple sectors. In this episode we discuss how important it is that everyone is coordinated and integrated for a team based approach to care.

Jim and Jacobi talked about why the team approach is comforting to dementia patients and how essential it is that the caregiver is considered a part of the team, as they are the only common thread that travels through the health care system with the patient. Caregivers play a crucial role in the health care system and are often overlooked.

They discuss building care plans by keeping the person living with dementia and their care partner at the centre of them, by recognizing their goals and preferences, to maintain quality of life; a holistic approach to care, considering the medical aspects but also the social and psychological aspects as well. 

Within these care plans, it can be a balancing act for the caregiver to learn how to communicate on behalf of the person living dementia, within the tight time limits that our primary care system has, without speaking for them. Jim shares his experience with this when his mother had Alzheimer’s and his tips for doing so effectively.

Remember: Diagnosis is only step one.

View Jim’s Story on YouTube at the link below:

https://www.youtube.com/watch?v=Lzd2aYpuKdk 

Dr. Ajantha Jayabarathan practices family medicine in Halifax NS. By adopting a shared care framework from mental health, Ajantha describes how she provides family-oriented dementia care in collaboration with other service providers. We get a glimpse of the comprehensive approach Ajantha strives for, though it is not always easy as service access or availability is often uneven.  We also hear about the relationship that can build over time between a family physician and her patients, including their families.  

Born and raised in India, Dr. A.J. (as most people call her) immigrated with her family to Canada where she went on to study medicine at Western University in London ON. She has now practiced family medicine for thirty years and has a clinic called Coral Shared-Care Health Centre in Halifax NS, where she focused on collaborative care and relationship building.

She shares many examples of the benefits of these collaborations and relationships, from patient safety to family involvement to the education of other health care professionals.

Dr. Jayabarathan talks about the different partnerships she has established with First Link coordinators, pharmacists, physiotherapists, mental health providers, long-term care staff, etc., and just how important they are in providing the best possible care to patients with dementia. 

Leanne Lawrence and Jean Daku live in rural Saskatchewan where Leanne’s mother, Marjory lived her whole life. We learn how Jean, a nurse practitioner, championed a memory clinic practice model within the Kipling Primary Care Centre and she and others supported Leanne and her mom as dementia developed. Enabling residents of rural areas to receive high-quality service is an important contribution to these types of clinics.  Often services exist but the clinic helps organize and coordinate them and to advocate when gaps emerge. 

Leanne explains some of the challenges of having to travel long distances for health care when dealing with dementia and how negatively that can impact the person living with it, such as confusion, agitation, and a general worsening of their condition. This really highlights the need for access to services in rural areas.

Noticing the major gap in care, Jean started working with the RaDAR group from Saskatoon to bring in more education and ways of dealing with dementia into small rural communities. Her multidisciplinary memory clinic has a team-based approach, with physicians, home care nurses, physical therapists, occupational therapists, social workers, and the Alzheimer Society First Link coordinator.

Both guests emphasize how critical communication and the coordination of care is for people living with dementia and for their care partners, to enhance the quality of life and how building a community framework is so beneficial. They also speak to how helpful social, mental, and physical stimulation is for the patient is as well.

For more information on RaDAR visit: https://cchsa-ccssma.usask.ca/ruraldementiacare/index.php 

Dementia, Stigma and Action – Human Rights

    In this episode of our series on Human Rights and Dementia we listen to 3 women who are active in the struggle to overcome the stigma experienced by so many people with dementia and that often extends to their families. Alisa Grigorich reads an article that she and her colleague Pia Kontos recently wrote on “COVID-19, stigma-  and the scandalous neglect of people living with dementia”. Phyllis Fehr, a dementia activist joins Pia in conversation about her experience of stigma and is working to combat it. Pia discusses a new project Reimaging Dementia that will mobilize people to pursue goals identified by individuals with dementia to improve their social and cultural well-being.