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/


Dementia Friendly Communities: Episode 19
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:

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
Grassroots Changemakers: Episode 20
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:  dementia.cafe@lakeheadu.ca
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  nwdementiaworkinggroup@gmail.com
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
Season 3, Episode 21: Choices

​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:  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  
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”.

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    
A Pioneering Partnership: Season 3, Episode 23   
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 what are 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 groundbreaking 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 15th 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 the participation of 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 explored the possibilities of introducing authentic partnerships in to 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
Happily Ever Older: Season 3, Episode 24
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.htm
Dementia & Spirituality:  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.

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/ 
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.
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