January 11, 2021
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/
December 14, 2020
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:
November 30, 2020
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.
November 18, 2020
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@example.com. The name will be drawn on December 1.
October 26, 2020
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:
October 13, 2020
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.
September 27, 2020
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
September 21, 2020
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.
September 14, 2020
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/
August 29, 2020
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/