COVID-19:Being a Caregiver, Season 3- Episode 30

Early on, Megan O’Connell and Claire Webster sensed the impact that COVID-19 would have on care partners of people living with dementia in the community.  Megan is based at the University of Saskatchewan and Claire who was caregiver for her mother before she died, has her own company http://www.carecrosswalk.com  and is lead for  McGill Cares http://www.mcgill.ca/dementia  

As members of the Alzheimer Society Of Canada Task Force on COVID-19, https://alzheimer.ca/en/help-support/dementia-resources/managing-through-covid-19/covid-19-tips-caregivers, they undertook a scoping review https://link.springer.com/article/10.17269%2Fs41997-021-00500-z  which concluded that “COVID-19 has severely impacted the lives of people with dementia and their care partners”. People with dementia and care partners experienced care partner fatigue and burnout, confinement challenges, and worsening neuropsychiatric symptoms and deteriorating cognitive function. These were worsened if people lived alone, had advanced dementia and were confined for a long time.

Through the Rural and Remote Memory Clinic team at USask, www.ruraldementiacare.usask.ca, Megan was already experimenting with technology to extend services to rural areas and reduce travel burden. She helped the Alzheimer Society of Saskatchewan www.alzheimer.ca/sk  adapt their services to an online model to compensate for the loss of caregiver supports. Claire likewise migrated her caregiver service using ZOOM and the McGill Cares went online.

 Megan and Claire talk about their observations of the experience of care partners and families during COVID 19 and the success of technological changes in help mitigate people’s isolation. They agree that more consideration needs to be given to how decisions impact people’s rights and reiterate the central role of care partners and families as advocates for those who cannot speak for themselves.

Other related research by Dr. O’Connell et al:

Going From Zero to 100 in Remote Dementia Research: A Practical Guide https://www.jmir.org/2021/1/e24098/

Using Twitter to Understand the COVID-19 Experiences of People With Dementia: Infodemiology Study https://www.jmir.org/2021/2/e26254

Claire Webster recommends The Care of the Older Person”  written by colleagues from McGill  “to provide concrete answers for care providers …as well as spouses and children of the elderly. Most importantly, this information is for seniors themselves… “  https://careoftheolderperson.com/

Culture, diversity & Spirituality - Season 3, Episode 29

In this episode in the spirituality and dementia series, we engage in a passionate discussion about spirituality, care, and support of people living with dementia from a lens of diversity and culture. This episode features Roberta Bishop and Elder Mary Wilson, hosted by Rev. Faye Forbes and Lisa Loiselle.
Roberta Bishop, Operations Manager at the Rainbow Resource Centre in Winnipeg Manitoba has both professional and personal experience supporting those living with dementia. Professionally, she has witnessed the rapid decline of some members of Over the Rainbow, a social support group for 2SLGBTQ+ community members aged 55 plus or minus https://rainbowresourcecentre.org/support/groups/over-the-rainbow/#:~:text=A%20social%20support%20group%20for,Manitoba%20Association%20of%20Senior%20Centres. Her own experience with dementia on the personal side is with family members, including her Mother. 

Elder Mary Wilson   http://marywilson.ca, also from Winnipeg Manitoba is known to many as Grandmother Of Four Directions and Walks With Wolves. She is renowned in Canada and many parts of the world as a spiritual teacher, Spirit Walker, and Healer. As a traditional expert, Mary has touched many lives over the past forty years helping people heal, emotionally, physically, and spiritually. She is active in health research and has traveled worldwide presenting alternatives in Indigenous health. Mary shares her story of supporting her mother living with dementia in addition to a close friend who passed at a very young age from dementia. As a professional, it is her responsibility as a healer to also support community elders. 
Although Roberta and Mary’s lenses are different, an important connection is the stigma and persecution 2SLGBTQ+ community members and indigenous Canadians have faced over many years. Both Roberta and Mary agree that individuals have to be respected and treated as individuals. It is important to bring people peace, joy, and happiness by continuing to provide them with the things they love and to continue to engage the spirit on one’s journey, whether that be dementia or another journey. They are both adamant that we need to stop hate and talk about love. We all need to recognize and acknowledge the hurt that has been inflicted on the 2SLGBTQ+ and Indigenous populations in Canada and to start the healing process. We can’t change history; however, we can learn from history so that history does not repeat itself! 

Up Next! Season 3, Episode 28

We are changing things up a bit and this episode talks about some new producers and what topics we will be showcasing in upcoming episodes.

Women and Dementia and Dementia in the Family context are 2 episodes that Dr. Elaine Weirsma, Ph.D. of Lakehead University will be discussing. Dementia from a woman’s perspective involves  3 engaging and articulate women who share a diagnosis of dementia and much more. Dr. Weirsma’s second episode explores dementia in a family context and interviews one family and their experience.

LGBTQ2S communities encounter dementia in similar, yet different ways from mainstream communities. Dr. Arne Stinchcombe, Ph.D., is producing a 4-part series on how gay people and care partners in unique ways experience dementia, resources available to them and some of the research underway. To learn more about Arne’s own research contact astinchcome@brocku.ca

Kathy Hickman and Jillian McConnell of the brainXchange (www.brainXchange.ca) are looking forward to creating a series on young-onset dementia and its impact on younger families, young caregivers, and children of a parent with dementia. This 4-part series will include interviews with people with lived experience, support services and researchers.

Lisa Loiselle convenes a second series, this one on the Arts and Dementia is in 8 parts and covers a range of arts and how they enrich the lives of people living with dementia. Lisa also will explore how dementia is represented in the arts, especially in contemporary media. Cynthia Huling Hummel, author of Unmasking Alzheimers:-Memories Behind Masks (https://www.amazon.ca/Unmasking-Alzheimers-Memories-Behind-Masks/dp/1387202189) joins Lisa as co-host for some of the episodes.

Dementia Connections has spread its wings to encompass all of Canada. You can sign up for a  Free Digital Issue: https://dementiaconnections.ca/free-digital-issue/

Spiritual Care: Filling their Souls- #2 in our Spirituality Series, Season 3, Episode 27

Guests Elisa Bosley and Christine Thelker discuss spiritual care for people living with dementia. Elisa speaks from the voice of a chaplain’s relationship with those living with dementia and Christine from a first-person voice regarding her own spirituality and supporting others living with dementia.

The conversation focuses on how spirituality is part of every human being.  It goes beyond a particular faith expression (religion) to a sense of joy, hope, comfort, assurance, safety. Unfortunately, spiritual care is often overlooked for people with dementia who live in long-term care communities, sometimes due to a lack of knowledge, time, budget, or comfort level. Both Elisa and Christine reflect on the fact that with the right resources and training, providing engaging, interactive spiritual care for people with dementia is possible for anyone.

Christine Thelker, author of "For this I am Grateful" https://www.austinmacauley.com/us/book/i-am-grateful was diagnosed at age 56 with Vascular Dementia and Cerebrovascular Disease. As a former health worker in Dementia Care and End of life care, she advocated for families and for better training for health care workers. Christine is an advocate with Dementia Alliance International https://www.dementiaallianceinternational.org and writes a blog https://chrissysjourney.com/ and has presented at national and international conferences.

Elisa Bosley, Christian chaplain from Boulder Colorado is the founder of https://spiritualeldercare.com/ a free resource of original worship service agendas, Bible discussion guides, sing-along classic hymns, and more, all designed to meet the spiritual needs of older adults with Alzheimer’s and other dementias..

Other Resources

Dementia-Friendly Worship: A Multifaith Handbook for Chaplains, Clergy and Faith Communities

https://www.amazon.com/Dementia-Friendly-Worship-Multifaith-Chaplains-Communities/dp/1785926659

When Words Fail: Practical Ministry to People With Dementia and Their Caregivers. Kregel Publications. 2018  .  Kathy Fogg Berry

Ministry with the Forgotten (2020) by Kenneth Calder

Live for Today! Season 3, Episode 26

     Mary Beth Wighton’s warmth, candor and strength shine through as she talks about her journal, now in book form, Dignity and Dementia: Carpe Diem.

    Written over a 6 year period, Mary Beth’s personal reflections frequently acknowledge the gifts from people in her life that have enabled her to live a full life and become a leading advocate for her peers living with dementia. The entries began as notes to her family and like ripples in a pond, they grew outward to reach a wider audience.

Mary Beth is co-chair of Dementia Advocacy Canada https://dementiacanada.com/ and  member of the Advisory Board for Canada’s Dementia Strategy                                               https://www.canada.ca/en/public-health/corporate/mandate/about-agency/external-advisory-bodies/ministerial-advisory-board-dementia/summary-experience-expertise.html

     Our interview concludes with Mary Beth encouraging people with dementia to focus on their abilities, set some goals in whatever area(s) they choose and take themselves seriously in pursuing them.

    Dignity and Dementia: Carpe Diem is published by Friesen Press https://books.google.ca/books/about/Dignity_Dementia_Carpe_Diem.html?id=CsQfEAAAQBAJ&redir_esc=y. It can be purchased through your local bookstore or online.

Being fully alive: How spirituality endures - Season 3, Episode 25

In this, the first episode of a 4-part Spirituality Series, Jane Kuepfer joins co-hosts Rev. Faye Forbes and Lisa Loiselle to introduce the topic of spirituality and dementia. Jane, RP, PhD, MDiv, is the Schlegel Specialist in Spirituality and Aging with the Schlegel-UWaterloo Research Institute for Aging (RIA). She is a spiritual director, an ordained minister, and a registered psychotherapist, and currently serves as a spiritual care provider in a retirement home. In her role with the RIA, Jane coordinates an annual Spirituality and Aging Seminar, conducts research and teaches graduate courses in Spirituality and Aging.

This episode begins by providing a definition of spirituality – that is, connection and meaning, the essence of life, and transcendence. Referring to the work of Bob Atchley and the idea that spirituality is about our ability to perceive experiences as spiritual, therefore, when we think about spirituality and dementia, Jane goes on to speak about spirituality and that it is not dependent on cognition. Rather, it is about being fully alive.

Later in the episode, Jane discusses the difference between spirituality and religion. Spirituality can be expressed in many ways and both Jane and Faye talk about how they convey spirituality, for example being involved in hope and peace-making in the world. Even thinking about dementia and what it means is a spiritual question according to Jane and that spirituality is a resource for people living with dementia. There are three aspects of spirituality that endure as dementia progresses and Jane goes into detail on these aspects. To wrap up the episode, Jane provides some way that people can support those living with dementia to express their spirituality.

You can find more information at these sites or at our resource page dementiadialogue.ca

https://www.beingpatient.com/voice/janice-hicks-reflects-spirituality-in-dementia/

Webinar– Spiritual Resiliency, Dementia and Caregiving During Uncertain Days: Staying grounded through hopeful stories and faith practices (May 2020) with Janet Ramsey

https://uwaterloo.ca/grebel/events/spirituality-and-aging-seminar

^{https://www.spiritualityanddementia.org/}

Happily Ever Older- Episode 24

Happily Ever Older

Moira Welsh’s new book Happily Ever Older: Revolutionary Approaches to Long-Term Care is a “call to action”.  Moira sees the need to change the way we provide support to people who have complex needs, especially people with advanced dementia. Over almost 20 years as a reporter for the Toronto Star, Moira has documented the shortcomings of long-term care in Ontario. Her investigative journalism had won her many awards but has not secured the change she sees needed.

In this episode and in her book, Moira outlines a new strategy that offers us real-life examples of how long-term care can be different. These strategies include the Butterfly Effect, the Eden Alternative, Greenhouse Project, as well as introducing alternative care settings like de Hogewey, Carol Woods, and Sherbrooke Community Centre. More information on each of these options can be found on the internet.

 “There is a real acceptance for change right now. Now is the time…” and Moira suggests that each of us needs to write our elected provincial and federal members asking for new standards for long-term care. She also suggests joining advocacy groups like CanAge www.canage.ca and also, if people are in a position to, asking LTC operators to adopt some of these new approaches.

You can win a copy of Happily Ever Older by writing dementia.dialogue@lakeheadu.ca.. Please put ‘Happily’ in the subject line.

Happily Ever After is published by ECW and can be purchased through your local bookseller or online.

You can find some of Moira’s articles by following these links. Others are posted on our resource page.

This  article  describes the Butterfly Effect being introduced in Peel Region.https://projects.thestar.com/dementia-program/

This article describes how Covid is being managed within a long-term care home.

https://www.thestar.com/news/canada/2020/05/30/a-day-in-the-life-and-death-on-the-sheridan-villa-covid-unit.html

Moira examines the impact of COVID isolation on long-term care residents.

https://www.thestar.com/news/canada/2020/06/28/what-pandemic-isolation-has-done-to-ltc-residents.html

This article recounts some of the underlying faults in long-term care that COVID has exposed.

https://www.thestar.com/news/canada/2020/04/28/covid-19-has-exposed-what-long-term-care-lacks-will-the-response-fix-it.html

A Pioneering Partnership

Almost 20 years ago, Brenda Hounman a woman living with dementia, responded to an advertisement posted by the Murray Alzheimer Research and Education Program’s (MAREP) Dr.Sherry Dupuis PhD, and thus began a fruitful collaboration. This episode describes how the relationship between “participant” and researcher has evolved, some of the results of the partnership and some lessons-learned that can help others replicate their experience.

    Brenda and Sherry describe several of the projects that were created through the partnership between researchers and people with lived experience. The first project Brenda and Sherry worked on was The Changing Melody   https://the-ria.ca/resources/a-changing-melody/.  It was a ground-breaking forum where people living with dementia and care partners shared experiences and for many, it was the first time they spoke openly about how dementia has affected them.

  Brenda initiated the BY US FOR US guides https://the-ria.ca/resources/by-us-for-us-guides/ that Dr. Dupuis and MAREP supported and continue to support two decades later. A 15^th guide is about to be released. Sherry and Brenda also discussed the Living Well with Dementia Project that worked on filling some of the information gaps people experience when diagnosed with dementia. https://uwaterloo.ca/living-well-with-dementia/care-and-support. 

   Initially, based on Participatory Action Research (PAR), the collaborations evolved in a way unique to people living with dementia which they refer to as “Authentic Partnerships”. You can read more about this in   "Use of participatory action research approach to develop a self-management resource for persons living with dementia" https://journals.sagepub.com/doi/full/10.1177/1471301221997281

            Dupuis and a colleague Dr.Carrie McAiney, PhD, have continued this line of research in a project Partnerships in Dementia Care that explores the possibilities of introducing authentic partnerships into long-term care settings. This is described at Authentic Partnerships | Partnerships in Dementia Care | University of Waterloo (uwaterloo.ca).

A listener to this episode can win a set of the guides donated by the Research Institute on Aging at UWaterloo by writing to dementia.dialogue@lakeheadu.ca

Changing Roles in Dementia Research: From subjects to participants: Season 3, Episode 22

David Czuczman is helping other people with Frontotemporal Dementia (FTD) and, just like she has throughout his 12 years of living with the condition, his wife Jill is supporting him all the way. David overcame some initial reservations and became an active participant in the Ontario Neurodegenerative Research Initiative (ONDRI www.ondri.ca). Jill, as a care partner, also participates in contributing data about her experience as a care partner but also as co-chair of the Patient-Community Advisory Committee (PCAC). Rick Swartz is a physician and research co-lead of the ONDRI project.

This episode explores the evolution of how people with lived experience who volunteer for research projects are being viewed no longer just as “subjects” but as “participants” and “collaborators”. As Rick says, research is becoming a team sport and people with lived experience are part of the team.  Jill describes what motivated her and David to enroll in the study and her own realization that she had a choice about how to respond to the challenge of David’s diagnosis. Her search for information and knowledge has led her to learn more about FTD and to reach out to obtain and offer support through such initiatives as a Facebook page that she hosts. 

Jill describes some of the activities/tests that David underwent annually through the initial ONDRI study and also how they have contributed to pilots that are leading to a new iteration of ONDRI. She talks about things she has learned along the way and about hopes she has for how participants might learn more about their situation, through the research. Rick outlines how the next study will try to provide more timely and relevant information to participants. He also shares how the members of the PCAC help guide the research and even the development of the research questions.

Jill’s Facebook page can be found at “Frontotemporal Dementia (FTD) Durham Support Group”. A video that Jill made about strategies she finds helpful as a care partner is at https://ondri.ca/ondri-supporting-international-self-care-day

Ontario Neurodegenerative Research Initiative (ONDRI) www.ondri.ca

For more information about the Ontario Brain Institute, click  https://braininstitute.ca

For information about the Canadian dementia research priorities click on https://alzheimer.ca/en/research/10-priorities-dementia-research-canada    

Choices Season 3 Episode 21

    The idea of life choices is woven throughout this episode’s conversation with Myrna Norman. Her life has not been easy, having been widowed in her mid-40’s with a growing family but she has got on with life in a remarkable way. Challenges confronted her when she was first diagnosed with Frontal Temporal Dementia (FTD) but she uncovered options and the choices they presented.

   Our ‘kitchen table” conversation was much like her book Dementia Strategies, Tips and Personal Stories – warm, refreshingly candid and encouraging of others. Myrna talked about her family and what lead up to and followed her writing Sometimes My Nana, a small story book for young children grandparent or other person with dementia. Our episode opens with Myrna reading from one of her recent poems I am not afraid. In the background of her ‘Zoom Room’ was a painting that she is currently working on.

  While writing and art are a big part of Myrna’s life, her main work is advocacy – seeking to improve life for people with dementia and to impart her philosophy of making positive steps to make the best of a dementia diagnosis. Myrna has nothing to prove but she has something to share.

Dementia Strategies, Tips and Personal Stories can be purchased by contacting the.normans@shaw.ca.

Sometimes My Nana can be downloaded for free at http://www.dementiadialogue.ca/uploads/1/1/5/2/115204585/sometimes_my_nana.pdf 

I am not afraid can also be downloaded at http://www.dementiadialogue.ca/uploads/1/1/5/2/115204585/i_am_not_afraid.pdf

 Myrna’s Facebook page –Dementia Middle Stages can be found at https://www.facebook.com/groups/Midstagedementia

For more information about Purple Angels go to www.Purpleangel-global.com