Dementia Dialogue

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.

 

 

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

 

 

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/

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! 

 

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/

What We Do Here Counts: Sharing stories of spirituality and caregiving, Season 3, Episode 31

Episode 4 of our Dementia & Spirituality Series:
What we do here counts – Sharing stories of spirituality and caregiving

Rev. Faye Forbes and Lisa Loiselle are joined by guests Matthew Dineen and Janice Keefe, PhD to discuss the spiritual needs of the person living with dementia and their care partners. Grounded in their faith communities, Matt and Janice describe how this has provided them with the strength on the dementia journey, as care partners and as advocates. 

Matt's wife Lisa was diagnosed with frontotemporal dementia at the age of 43 in 2013 and subsequently moved into long-term care. They have three children. His resolve to help shed light on the younger face of dementia has included numerous addresses such as the G7 Global Action against Dementia Legacy Event (Ottawa, 2014). He is a Team Member of Dementia Advocacy Canada (DAC) https://dementiacanada.com/. Together with his children, Matthew spoke on the impact of dementia upon adolescents at the 2016 AFTD Education Conference. Matthew is currently involved in assisting organizations with implementing guidelines for how to make Canadian places of worship more dementia-friendly and inclusive. 

Janice is Professor and Chair of Family Studies and Gerontology at the Mount Saint Vincent University and is Director of the Nova Scotia Centre on Aging. Her research interests include continuing care policies and practice, family/friend caregivers and rural aging.  With her eight siblings and their families, Janice cared for her mother Genevieve. As part of her voluntary efforts, she provides workshops on caregiving and spirituality and other topics.

Resources

Berry, K. (2016). When Words Fail: Practical Ministry to People with Dementia and Their Caregivers. Centennial, CO: FaithHappening Publishers. Note: To view demonstration videos and to download a free Study Guide, go to:www.whenwordsfail.com

An extensive bibliography is available by writing dementia.dialogue@lakeheadu.ca

The Solidarity of Sisterhood: Women living with dementia- Season 3, Episode 32

The Solidarity of Sisterhood: Women Living with Dementia

 

Three inspiring women living with dementia—Brenda, Clara, and Myrna, talk with Dr. Elaine Wiersma about what a diagnosis means to them. Through a “kitchen table” conversation about the challenges and joys of being women living with dementia, you will walk away inspired by their courage and resilience.

Women are more likely to be impacted by dementia, both as people living with a diagnosis and as care partners. While gender has largely been ignored in dementia research and supports, these women’s stories illustrate the importance of understanding how dementia impacts various groups of people.

Since Brenda Hounam was diagnosed in 2000, she has been an active advocate for people living with dementia. She is the founder of the By Us For Us (BUFU) guides, a series of booklets for people with dementia by people with dementia. Brenda was a guest in Episode # 21.

Clara Mersereau is one of the most kind, and loving spirits anyone could know. She’s always the first to find the bright side if you are having a hard time seeing it. Clara was diagnosed with Alzheimer’s just over 4 yrs ago.  Clara and her family will be/are featured in Episode 33.

After being diagnosed 12 years ago with frontal temporal dementia, and after several years of despair and questioning, Myrna Norman began to educate herself about dementia.  She was 59 at the time. Since then, Myrna has become an Advocate for all Persons Living With Dementia and their family and friends.  Norma talks more about her life and her writings in Episode 23.

Dr. Elaine Wiersma, PhD, Associate Professor, Department of Health Sciences, and Associate Director, Centre for Education and Research on Aging & Health (CERAH), Lakehead University, Thunder Bay, Ontario, Canada.

If you are a woman living with dementia and would like to join an online bi-weekly Sisterhood group for women living with dementia, please contact Elaine at ewiersma@lakeheadu.ca .

 

For further information, please see the following resources:

A short video called “Women with Dementia Living Strong”

https://www.youtube.com/watch?v=aG8BKSyFUK0

Bamford, S. (2011). Women and dementia—not forgotten. https://ilcuk.org.uk/wp-content/uploads/2019/01/Women_and_dementia.pdf

Alzheimer Society of Canada

https://alzheimer.ca/on/sites/on/files/documents/2015%20Media%20Releases-.pdf

Alzheimer Society UK—Why is dementia different for women?

https://www.alzheimers.org.uk/blog/why-dementia-different-women

Alzheimer Disease International—Women and Dementia: A Global Research Review

https://www.alzint.org/resource/women-and-dementia-a-global-research-review/

Academic articles:

Broders, K.¹, & Wiersma, E.C. (2020 online first). Creating change: The experiences of women living with young-onset dementia. Disability & Society. https://doi.org/10.1080/09687599.2020.1848801

Bartlett, R., Gjernes, T., Lotherington, A-T., Obstefelder, A. (2018). Gender, citizenship and dementia care: a scoping review of studies to inform policy and future research. Health and Social Care in the Community, 26(1), 14-26.   https://doi.org/10.1111/hsc.12340

Sandberg, L.J. (2018). Dementia and the gender trouble? Theorizing dementia, gendered subjectivity and embodiment. Journal of Aging Studies, 45, 25-31. https://doi.org/10.1016/j.jaging.2018.01.004

 

Dementia: It's A Family Affair

In this podcast, the Mersereau family shares their experiences with dementia. Clara and Bill live together in Thunder Bay, Ontario. Clara was diagnosed with dementia four years ago. Bill, her husband, supports her as they experience the joys, challenges, and everyday life with Clara’s diagnosis. Their two daughters, Jo-Ann (who lives in Thunder Bay) and Patty (who lives in Winnipeg) join in to share their experiences as daughters supporting their parents. 

Services and research are often divided into focusing either on the people living with dementia or on the care partners. However, dementia affects not only individuals but family units as well. Dr. Elaine Wiersma interviews the Mersereau family to get their perspectives on how, as a family, they have learned to live with dementia and support each other along their journey. Poignant and touching, you will be inspired by their love for each other.

If your family would like support on your journey living with dementia, contact your local Alzheimer Society for information and resources. 

Dementia Inclusive Choices for Exercise

      In our podcast, a frequent message is the importance of people with dementia remaining active and involved with others. This is often easier said than done because of restricted options that people often experience or perceive. The Dementia Inclusive Choices for Exercise (DICE) project enables communities to be more inclusive so that people with dementia have more opportunities to be active.

 Carole Johannesson lives with dementia and is a leader in a research project conducted by Laura Middleton, PhD at the University of Waterloo. Brian Johannesson has supported Carole’s participation. The project worked with both people with dementia and exercise providers to explore what inclusivity means and what providers need to possess or do,  including understanding what dementia is and developing techniques to facilitate inclusion

  Dementia Inclusive Choices for Exercise (DICE) has developed excellent resources for people with dementia and for exercise providers, including a 4-part training module to help exercise providers, sports coaches or recreational leaders gain the knowledge and skills to engage with people living with dementia and support them in physical activity. These can be accessed at www.dementiaexercise.com.

 

Reigniting Canada‘s Dementia Strategy, Season 3, Ep #35

Mary  Beth Wighton and Lisa Poole, co-chair the Dementia Advocacy Canada (DAC) our the leading advocacy organization of people with lived experience of dementia. In this episode, they talk about DACs efforts to strengthen our National Dementia Strategy especially in a meeting they had on June 8 2021 with then Minister of Health, Paddy Hadju. 

13 DAC members discussed challenges in implementing the strategy and their recommendations for improving it.  To read DAC’s presentation click on https://www.dementiadialogue.ca/upload/documents/nat-strat-dac-notes.pdf

The National Strategy was announced in August 2019. To read it. Click here

A Dementia Strategy for Canada: Together We Aspire: In Brief.          

An updated report was published in 2020 and can be found at https://www.canada.ca/en/public-health/services/publications/diseases-conditions/dementia-strategy-annual-report-parliament-june-2020.html

 To learn more about Dementia Advocacy Canada check out their  website   https://dementiacanada.com