Dementia Dialogue

Rachel Bar, the Director of Research and Health and TCAS Postdoctoral Fellow at Canada’s National Ballet School in Toronto speaks with Lisa Loiselle about dance and movement for those living with dementia. Rachel speaks about her lifelong involvement in dance and as a professional ballet dancer, and how that took her down an academic path researching how dance affects the brain. That subsequently brought her to working with older adults and people living with dementia, artistically and through program development.

Sharing Dance Older Adults is a collaborative program between Baycrest and Canada’s National Ballet School that works to make dance accessible for older adults with various physical and cognitive abilities. There are several versions of this program: In Your Seat and On Your Feet. These variations focus on dance across the lifespan and creating a joyful human experience in an accessible way, including delivering a group program and an at-home version. There are so many reasons and ways to dance, and Rachel talks about how the Sharing Dance Older Adults program includes and considers them all. She also speaks about the benefits of dance and how it can challenge the stigma about dementia.

As this program has expanded and continues to find ways to be more accessible, an app was launched in April 2021 to provide meaningful programs for Canadians, with hopes to expand internationally in the future.  

 Resources:

Journal article: Dancing With Dementia: Exploring the Embodied Dimensions of Creativity and Social Engagement (https://academic.oup.com/gerontologist/article/61/5/714/5903628) [see attached pdf]

link to the Sharing Dance site: https://oa.sharingdance.ca/

research project website: https://sdseniorsresearch.com/

https://www.dancingwithparkinsons.com

In this new episode of our Arts & Dementia series, Lisa Loiselle and special co-host Cynthia Huling Hummel, speak with couple Lynda Everman and Don Wendorf about the importance of the expressive arts in self-care. Don describes expressive arts are esthetic or artsy that have the power to prompt emotions, to allow for an expression of emotions or an emotional reaction, to prompt memories and associations and allow some participation and sharing of that kind of experience with other people. It can be anything artistic like music, visual arts, writing and poetry. For Linda Everman, it is fabric arts like quilting and making stoles. Linda describes how the stole initiative began and how it has evolved into the writing of a book.  For Don and Cynthia, music has allowed each of them to express themselves but also connect with others. Cynthia, Lynda and Don also speak about the enjoyment they get from their respective arts endeavours and how that has allowed them to continue to live well as a  person with dementia and as care partners.

For more information go to the Arts & Dementia section of our resource page. 

We want to hear from listeners, guest interviewees,

Groups will be held virtually over Zoom.

Participants will receive sample episodes to listen to in advance.

Arne Stinchcombe chats with researchers doing work with lesbian, gay, bisexual, transgender, queer, and Two-Spirit (LGBTQ2+) persons with dementia and carers. Jason Flatt is an Assistant Professor in the Social and Behavioral Health Program at the University of Nevada (Las Vegas) School of Public Health. Jason discusses how he got involved in dementia research and some of the concerns of 2SLGBTQI+ persons with dementia in their caregivers. He also makes the case for why sexual and gender diversity are important considerations within dementia research.

Celeste Pang (Senior Research Officer, Egale Canada) and Ashley Flanagan (Research Fellow, National Institute on Ageing) are researchers working on a Canadian research project involving LGBTQ2+ persons living with dementia and their unpaid carers in Canada. We discuss some of the findings from their research project and their implications. 

Both interviews reveal a need for specific initiatives to respond to this community's needs, especially in regards to caregivers.

Resources:

https://www.albertahealthservices.ca/assets/info/pf/div/if-pf-div-continuing-care-situational-examples.pdf

https://open.alberta.ca/dataset/0432e7da-2884-4a39-8b17-6199cadd4b7b/resource/5aeb5c77-bd1f-4963-ae4c-893e7c738340/download/social-isolation-l

https://www.cmaj.ca/content/191/31/E851

https://xtramagazine.com/health/queer-trans-care-for-older-adults-18373

https://clri-ltc.ca/lgbtq/

https://www.virtualhospice.ca/2slgbtq/

https://egale.ca/

This episode is the first in an 8-part series on the arts features a discussion on how the arts (in any form) can create a sense of community and belonging and builds relationships amongst participants. Host Lisa Loiselle talks with Lisa Meschino who has seen this first-hand during her work developing programs such as Gather at the Gallery and as an artist at the Dotsa Bitove Wellness Academy.  Lisa holds a PhD in cognitive neuroscience and is a community-engaged visual artist and researcher living in Toronto. She has worked for many years creating art with people living with dementia and is developing an arts-based learning series in applied relational care at University Health Network (UHN), Toronto. She has unfortunately witnessed the stigma that continues to circulate in communities and discusses the importance of using the arts to help in the process of culture change.

Resources:

About Meet Me at MoMA Program:

1. Meet Me at MoMA website – Program Guide for home and community programs:

https://www.moma.org/visit/accessibility/meetme/modules/

 2. Meet Me at MoMA website - Pilot program and research document: https://www.moma.org/visit/accessibility/meetme/_assets/momaorg/shared/pdfs/docs/meetme/MeetMe_FULL.pdf

3. Rosenberg, Francesca (2009) 'The MoMA Alzheimer's Project: Programming and resources for making art accessible to people with Alzheimer's disease and their caregivers', Arts & Health, 1: 1, 93 — 97

About The Dotsa Bitove Wellness Academy:

1. Mitchel, G.J., Dupuis, S.L., & Kontos, P.C. (2013). Dementia Discourse: From Imposed Suffering to Knowing Other-Wise. Journal of Applied Hermeneutics 2013 Article 5

Resources for this episode can be found under the following sections on our resource page:

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    

      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.

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. 

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 [email protected] .

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

Episode 4 of our Dementia & Spirituality Series:

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 [email protected]