We then speak with Kate Swaffer who leads Dementia Alliance International whichis a worldwide group of people with dementia.  Kate has secured a place at the table for people with dementia at several levels of dementia policy work.

n 

Eighty-one-year-old Felix, who was diagnosed much to his and his family’s shock with dementia in 2008, immigrated to Canada in 1972 from Nigeria in West Africa by way of the U.K. Being in health care herself, Ngozi, has been able to help facilitate the coordination and maintenance of care with all of the different, “siloed” care partners within their care team, by keeping a flow of information between them all as well as her family.

She discusses the importance of this connectivity and filling in the knowledge gaps with care providers about specific cultural and personal information, to help dementia patients feel comfortable, safe, and happy. She talks about the need for systems and training to support the support staff in better caring for their patients in this way.

Ngozi also touches upon different cultural perceptions about aging and dementia and the need to have more awareness regarding elder care planning and caregiver support in racialized communities.

The Alzheimer Society of Canada has a tool available for download on their website called All About Me, a booklet that provides specific information about a dementia patient to their care providers.

A sample booklet can be found here:

https://archive.alzheimer.ca/sites/default/files/files/national/core-lit-brochures/all-about-me_booklet.pdf 

Growing up in a large family in Halifax, Ron dropped out of high school in the 1940s in favor of earning a living. At 16 he interviewed for a job in broadcasting and not only got the job but started the very next day, thus beginning a decades-long career in journalism. However, he always had a “bucket wish” to attend university, something that was still considered “elitist” in his younger years and has found the combination of intellectual and social stimulation very helpful in managing the progress of his dementia. He is also a big proponent of physical activity to the same end.

Ron advocates for evidenced-based strategies for living with dementia by utilizing the experience and expertise of those doing so, greater access to information on dementia at the first medical point of contact and the need for more time and consideration to be paid to aging patients and any cultural sensitivities that may be present.

By Us For Us is a series of booklets prepared by people living with dementia and care partners and provide useful guidance on different aspects of dementia from a lived experience perspective.

https://the-ria.ca/wp-content/uploads/2018/11/BUFU-Guide-Before-Early-Diagnosis_AODA.pdf 

Michelle discusses the importance of First Link in optimizing and coordinating all of the different services and supports available to people living with dementia and their families, from pre-diagnoses through the continuum of the journey, even without a doctor’s referral.

She also talks about the difficulty some face of simply receiving an initial Alzheimer’s or dementia diagnosis, due to the hesitation or ability of a primary care provider or the lack of one entirely. This highlights the need for a collaborative approach between health care professionals, community partners, and families.

For more information about the Alzheimer Society First Link program, go to: https://alzheimer.ca/en/help-support/programs-services/first-link

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/ 

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/ 

    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.

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 

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. 

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:

https://www.youtube.com/watch?v=Lzd2aYpuKdk 

   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 dementiadialogue@lakeheadu.ca. The name will be drawn on December 1.

     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.

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:

https://alzheimer.ca/huroncounty/en/learning-ropes-living-mcir

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/

    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:

• https://www.thespec.com/opinion/contributors/2020/11/03/survey-will-help-build-dementia-friendly-cities.html#:~:text=Currently%2C%20the%20Alzheimer%20Society%20estimates%20that%20there%20are,and%20executive%20and%20physical%20functioning%2C%20among%20other%20symptoms.

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

• B.C.: https://alzheimer.ca/bc/en/take-action/dementia-friendly-communities
• Saskatchewan: https://dementiafriendlysaskatchewan.ca/
• Manitoba: https://alzheimer.mb.ca/we-can-help/programs-and-services/dfc/
  • Ontario: https://alzheimer.ca/on/en/take-action/become-dementia-friendly/dementia-friendly-communities-ontario
• Dementia-Friendly Canada webinar, March 2020: https://vimeo.com/402941879

   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

   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

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    

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 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 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

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

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/

    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.

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

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/

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! 

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/

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

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

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. 

 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.

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    

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
2. Mitchell, G.J., Jonas-Simpson, C., Richards, J., Brown, S., Bitove, V. (2019). Creating a relational arts-based academy for persons living with dementia. First Published December 24, 2019 Find in PubMed: https://doi.org/10.1177/1471301219895647
3. Visual arts and transgenerational learning at the Bitove Academy: https://vimeo.com/540302311
4. About the Bitove Academy: https://vimeo.com/50757222

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

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/

Groups will be held virtually over Zoom.

Participants will receive sample episodes to listen to in advance. The groups will take approximately 1 hour and will be recorded but privacy is assured.

We are hoping to begin these in early to mid-November. If you are interested, please fill out our form here https://forms.gle/a7hPoS4MTQHx5ZTh6 or contact Dementia.Dialogue@lakeheadu.ca

To sign up: https://forms.gle/1jkTYQNbsgCXMy8v9

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

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

Simon reflects on his time working at the Dotsa Bitove Wellness Academy and making the documentary  “Music is Life”  https://youtu.be/6bfYnZTMFRc    and speaks about his new pursuit with the Bitove Method www.thebitovemethod.com  an online program.

The full version of “Try a Little Kindness” can be viewed at https://youtu.be/v7reLCS6Qq8. More information on Voices in Motion including a train the trainer program can be found at https://voicesinmotionchoirs.org and www.facebook.com/VoicesInMotionChoirs

The full version of   “Music Takes You Higher” can be found at             https://www.youtube.com/watch?v=h2HcRUEbJiM

The full documentary from which the final clip was taken can be found at “ The Intergenerational Choir Project - Alzheimer Society London and Middlesex”        https://youtu.be/L5o3Nh6ydb

Other Canadian resources include:

 The Toronto Recollective is a weekly musical group that helps people with a cognitive impairment gain a new social network, rediscover a sense of accomplishment and find joy through music-making. https://www.recolectiv.ca

  Several Alzheimer Societies offer customized recorded music for people. You can learn more at  https://musicproject.ca/

We have assembled 3 series to help you celebrate this season - Ars, Spirituality, and Women & Dementia. Check out our website. 

We look forward to bringing you many interesting and innovative episodes in Season 4. 

The group has 500 members from 25 countries, with a passion for radically changing the culture of dementia through creativity and the arts has inclusivity at its core. As a member of the coalition, Mike feels that everyone has a voice and is heard. For people like him, with a dementia diagnosis, their opinions matter..

You can see a video of the song being performed at https://www.reimaginingdementia.com/campaign

Resources:

Reimagining Dementia Facebook Page: https://www.facebook.com/reimaginingdementia/

Article: https://content.iospress.com/articles/journal-of-alzheimers-disease/jad210057

Contact info: reimaginingdementia@gmail.com

Cynthia started having memory problems at the age of 49. She did not consider herself an artist until after her diagnosis and now she is a published author, artist, and fierce Alzheimer’s advocate. Cynthia talks about how she got started in the arts and how that work has turned into her published book, “UnMasking Alzheimer’s”, a compendium of stores and photos of 36 masks that she created as an artist.

Daniel C. Potts, is a neurologist, author, educator, and champion of those living with Alzheimer’s disease and other dementias and their care partners. Inspired by his father’s transformation from a blue-collar worker to a watercolor artist after his dementia diagnosis through person-centered care and the expressive arts. Dr. Potts has sought to make these therapies more widely available through his foundation, Cognitive Dynamics. Danny also speaks about a dark time in his life after his father’s diagnosis when, as a neurologist, he felt unable to help his parents. Seeing his father’s artwork, however, sparked something in him and he began writing poetry to help him deal with his role as a care partner. Dr. Potts shares one of his poems during this podcast

Biographies:

Daniel C. Potts, MD, FAAN is a neurologist, author, educator, and champion of those living with Alzheimer’s disease and other dementias and their care partners. Selected by the American Academy of Neurology as the 2008 Donald M. Palatucci Advocate of the Year, he also has been designated an Architect of Change by Maria Shriver. In 2016, he was chosen by the University of Alabama Medical Alumni Association as a recipient of the Martha Myers Role Model Award, which honors physician alumni whose lives epitomize the ideal of service to their communities. Along with his wife, Ellen W. Potts, MBA, he authored A Pocket Guide for the Alzheimer’s Caregiver, which is recommended by the Alzheimer’s Association, the American Academy of Neurology, and Maria Shriver. Inspired by his father’s transformation from saw miller to the watercolor artist in the throes of dementia through person-centered care and the expressive arts, Dr. Potts seeks to make these therapies more widely available through his foundation, Cognitive Dynamics. Additionally, he is passionate about promoting self-preservation and dignity for all persons with cognitive impairment. He practices neurology at the Tuscaloosa VA Medical Center.

The Rev. Dr. Cynthia Huling Hummel of Elmira served in parish ministry for 15 years prior to her diagnosis of early-stage Alzheimer’s disease. She received her BS from Rutgers College, her MDiv from New Brunswick Theological Seminary, and her DMin from McCormick Theological Seminary.   Cynthia is a fierce Alzheimer’s advocate and has become a voice for those living with dementia- locally, nationally, and internationally.  She was recently appointed to serve a 4-year term on the 18 members, National Advisory Council on Aging representing the 5.8 million Americans living with Alzheimer’s and related dementias.   Cynthia is passionate about Alzheimer’s research and is in her 11th year of the ADNI study.  She is serving on the Dementia Action Alliance (DAA) Advisory Board and is the co-chair of the National Academies of Sciences Alzheimer’s Decadal Survey Advisory Panel. She has participated in three NIH Research Summits, the most recent in July 2020. Cynthia sings in the band ”Country Magic” and in 2016, was inducted into the NY State Country Music Hall of Honor.  A lifelong learner, Cynthia enrolled at Elmira College in 2011 and has taken 40 classes so far. Cynthia is an artist and an author.  Her book, “UnMasking Alzheimer’s” is a compendium of stories and photos of the 36 masks that she created.  In 2019, ten of her Alzheimer’s masks were displayed at the National Gallery of Art in Stockholm during the 2019 Dementia X Conference.  Cynthia loves to travel, kayak, to swim and enjoys serving as a substitute preacher. Her mantra?  “Don’t focus on what you can’t do.  Focus on how you can still make a difference.” 

Resources:

Cognitive Dynamics Foundation: https://www.cognitivedynamics.org

Daniel and Cynthis singing in a tornado shelter: https://www.facebook.com/don.wendorf.9/videos/1844816778968134/?d=n

The poem Danny read on the podcast set to music: https://youtu.be/_4KrNQgjc_s

Geneviève, quant à elle, est chercheure auprès de l’équipe pancanadienne de Recherche en organisation des services sur l'Alzheimer – plus communément appelée l’équipe ROSA.

Diane et Geneviève collaborent actuellement sur un projet de recherche financé par les Instituts de recherche en santé du Canada. Ce projet, qui vise à améliorer la prise en charge des patients vivant avec des troubles neuro-cognitifs majeurs pendant la pandémie, réunit des chercheurs, des cliniciens, des patients, des proches aidants ainsi que des décideurs au Québec, en Ontario, en Saskatchewan et en Alberta.

Ensemble nous avons parlé de leur projet de recherche, de l’impact de la pandémie sur les personnes vivant avec des troubles neurocognitifs majeurs et leurs familles, ainsi que des services de santé et services sociaux en appui aux personnes atteintes de ces troubles.

• Association for Fronto-temporal degeneration:  https://www.theaftd.org/
• AFTD support groups in Canada: https://www.theaftd.org/get-involved/in-your- state/canada/
• The Dementia Society of Ottawa and Renfrew County: https://dementiahelp.ca/
• ASO: https://alzheimer.ca/on/en
• ASC: https://alzheimer.ca/en
• brainXchange: https://brainxchange.ca/public/home

Part 1  is a conversation with Matt Dineen, their father.  

For more information: 

• Association for Frontotemporal degeneration: https://www.theaftd.org/
• AFTD support groups in Canada: https://www.theaftd.org/get-involved/in-your-state/canada/
• The Dementia Society of Ottawa and Renfrew County: https://dementiahelp.ca/
• ASO: https://alzheimer.ca/on/en
• brainXchange: https://brainxchange.ca/public/home

Il y a environ trois ans, André a été diagnostiqué avec la maladie à corps de Lewy, une forme de trouble neurocognitif qui partage de nombreuses similitudes avec la maladie de Parkinson.

Lors de notre rencontre, nous avons parlé du diagnostic d’André, de l’impact de ce trouble neurocognitif sur leur vie et des efforts qu’ils font, chaque jour, pour rester actifs physiquement et intellectuellement, et profiter du moment présent.

Resources:

Website: www.dementiacarers.ca

https://www.brainandlife.org/articles/how-improvisational-techniques-help-engage-dementia-patients/

https://www.psychologytoday.com/ca/blog/play-your-way-sane/202004/improvisations-benefits-people-dementia

Resources

Frontotemporal Dementia (FTD) Durham Support Group - https://m.facebook.com/groups/221301621683010

The Association for Frontotemporal Dementia - https://www.theaftd.org

brainXchange, Frontotemporal Dementia Resource Page - https://brainxchange.ca/Public/Resource-Centre-Topics-A-to-Z/Dementias-Rare-forms-of-/Frontotemporal-Dementia

Alzheimer Society of Canada, Young Onset Dementia - https://alzheimer.ca/en/about-dementia/other-types-dementia/young-onset-dementia

brainXchange, Young Onset Dementia Resource Page - https://brainxchange.ca/Public/Resource-Centre-Topics-A-to-Z/Young-Onset-Dementia

À la suite de ce diagnostic, Claire a dû repenser à son avenir et faire d’autres projets de vie; une période très difficile qu’elle qualifie de « traumatisante ». En contrepartie, cette période lui a aussi permis d’élargir son cercle social, de s’impliquer auprès de sa communauté et de renouer avec son amour des arts.

Claire et moi avons parlé de tout ça et bien plus encore dans le balado qui suit !

Cliquez sur ce lien pour lire le poème de Claire qui s’intitule « Faux cils, quelques-unes des toiles de Claire, et la biographie et photo de Claire  https://www.dementiadialogue.ca/podcast-3-biographies

Véronique et Pierre collaborent depuis quelques années sur Villages culturels, un projet dont le but principal est d’identifier des méthodes, des approches et des activités culturelles qui pourraient être utilisées dans les centres de soins de longue durée en Nouvelle-Écosse afin de créer une atmosphère culturelle acadienne et francophone pour les résidents.

Ensemble nous avons parlé de la réalité de la communauté francophone et acadienne en Nouvelle-Écosse, des grands objectifs de leur projet et de leurs espoirs aussi pour les villages culturels.

Nous avons aussi demandé à Véronique de nous parler un peu de deux initiatives très intéressantes du Regroupement des ainés : lettres entre générations et cœur d’artiste!

Si vous aimez la musique, nous vous invitons à découvrir la chaine YouTube du Regroupement des ainés de la Nouvelle-Écosse.

Nous vous invitons également à visiter les sites Web du Regroupement des ainés de la Nouvelle-Écosse et du Réseau santé Nouvelle-Écosse pour plus d’information sur leurs services et ressources.

John and Cindy discuss how they took action when they couldn’t find the “right” supports for someone living with young-onset dementia by creating a program called YouQuest. YouQuest focuses on providing intentional days for people living with young onset dementia based on providing real-life experiences, all guided by its participants.

Resources

YouQuest - https://youquest.ca/

Online Support Group for care partners of people with young-onset Dementia – Contact cindy@youquest.ca

Frontotemporal Dementia (FTD) Durham Support Group - https://m.facebook.com/groups/221301621683010

The Association for Frontotemporal Dementia - https://www.theaftd.org

brainXchange, Frontotemporal Dementia Resource Page - https://brainxchange.ca/Public/Resource-Centre-Topics-A-to-Z/Dementias-Rare-forms-of-/Frontotemporal-Dementia

Alzheimer Society of Canada, Young Onset Dementia - https://alzheimer.ca/en/about-dementia/other-types-dementia/young-onset-dementia

brainXchange, Young Onset Dementia Resource Page - https://brainxchange.ca/Public/Resource-Centre-Topics-A-to-Z/Young-Onset-Dementia

 Brenda and Lisa continue to work on many dementia advocacy initiatives and have formed a deep and meaningful relationship. The conversation includes the loss of friendships after a diagnosis, how participants in the study defined friends vs. acquaintances, leisure and how that helps people maintain friendships, how trust plays into relationships, and more.

Colleen Whyte is at Brock University. She and her colleagues, Darla Fortune (Concordia) and Rebecca Genoe (Regina) have studied friendship and dementia, published a number of articles, created a website and video vignettes. Brenda and Lisa have been working with them on a set of conversation tools.

Resources:

https://dementiaandfriendship.ca/

https://www.cbc.ca/listen/live-radio/1-66-the-morning-edition-sask/clip/15928672-university-regina-researcher-studies-maintaining-friendships-dementia-diagnosis

Resources

• Genetic Testing and Alzheimer’s Disease - https://alzheimer.ca/en/about-dementia/what-alzheimers-disease/genetic-testing-alzheimers-disease 
• A Few Facts about Genetic Testing and Young Onset Dementia - https://alzheimer.ca/en/about-dementia/other-types-dementia/young-onset-dementia/genetics 
• What Teens Need to Know if a Parent has Young Onset Dementia -https://alzheimer.ca/en/about-dementia/other-types-dementia/young-onset-dementia/teens 
• Young Caregivers Association - https://youngcaregivers.ca/about/
• Young Carers Project, Research Institute for Aging, University of Waterloo - https://the-ria.ca/resources/young-carers-project/ 
• Alzheimer Society of Canada, Young Onset Dementia - https://alzheimer.ca/en/about-dementia/other-types-dementia/young-onset-dementia
• brainXchange, Young Onset Dementia Resource Page - https://brainxchange.ca/Public/Resource-Centre-Topics-A-to-Z/Young-Onset-Dementia 

Alison Phinney speaks about her work as a nurse and, over the years working with dementia and how that has led her to create a new community-based program called Building Capacity Project. This is a project that is a partnership between Vancouver and Thunder Bay. The purpose is to discover the assets that the community has and develop that would support people with dementia in a better way.

In episode 1, Granville and Alison speak about how they each got involved in community-based work and speak extensively about stigma and fear and how they are working to make a change. Granville talk in detail about one of two projects – Creating a t-shirt that has been distributed to change people’s perspective of what living with dementia is about.

In the second episode, Alison and Granville describe a Toolkit that came out of a collaboration between the community and people living with the experience of dementia and is meant to help others understand their experiences in the hopes that engagement and inclusion of those with dementia will become normalized. 

Alison's Bio

Granville's Poem

After three months off, we are delighted to be back with our podcast series Neuro-cognitive disorders: let's talk about it! This fall, we will present a series of podcasts featuring Francophones from Western Canada. In the first episode of the series, host Ingrid Gagnon talks with Gioia Sallustio about resilience, close support, the importance of having access to resources in your mother tongue and her attachment to Franco-Albertan community.

Resources: 

• Genetic Testing and Alzheimer’s Disease - https://alzheimer.ca/en/about-dementia/what-alzheimers-disease/genetic-testing-alzheimers-disease
• Alzheimer's genes: Are you at risk? - https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/in-depth/alzheimers-genes/art-20046552
• A Few Facts about Genetic Testing and Young Onset Dementia - https://alzheimer.ca/en/about-dementia/other-types-dementia/young-onset-dementia/genetics
• Alzheimer Society of Canada, Young Onset Dementia - https://alzheimer.ca/en/about-dementia/other-types-dementia/young-onset-dementia
• brainXchange, Young Onset Dementia Resource Page - https://brainxchange.ca/Public/Resource-Centre-Topics-A-to-Z/Young-Onset-Dementia 

Following the diagnosis, Ruth and Maggie connected with the Alzheimer Society Southwestern Partners.  While they were well received as a same-sex couple, they realized they were the only out participants in their group. Maggie approached the Alzheimer Society to consider starting a group to support 2SLGBTQ clients and caregivers.  The first two sessions of the group had carers of 16 Alzheimer clients.

 Maggie has invited any listeners who might be interested in contacting her by email at l nanastable675@gmail.com

Resources:

Ruth and Maggie share their story in this video.

https://on.alz.to/site/SPageNavigator/ASLM/2021/Cabin_Fever/ASLM_Cabin_Fever_2021.html;jsessionid=00000000.app20058b?NONCE_TOKEN=F25504F441FB0A8DA0A27C9905683678

Dementia as an Animal

https://www.youtube.com/watch?v=ynAXxAO4pws

Alzheimer Society Southwest  Partners

https://alzswp.ca/

Ontario Alzheimer Society

https://alzheimer.ca/on/en

National Institute on Aging /Egale Canada

https://2slgbtqi-aging.ca/tag/dementia/

Link to the toolkit: https://www.flippingstigma.com/ 

Hélène et Sandra collaborent depuis plusieurs années maintenant à l’élaboration d’un cadre plus humain pour les services et les soins des personnes atteintes de troubles de mémoire. Ce cadre, qu’elles appellent l’approche par le plaisir©, optimise la qualité de vie des clients en misant sur leur bien-être psychologique. Dans cet entretien, Hélène et Sandra nous parlent de cette nouvelle approche et de ses impacts positifs sur les clients, les familles, les proches aidants et le personnel soignant. Pour plus d’information sur cette approche, vous pouvez communiquer directement avec Hélène et Sandra. Si vous êtes un proche aidant ou un organisme communautaire, veuillez contacter Hélène par courriel à : Helene.Carbonneau@uqtr.ca Si vous êtes un organisme du réseau de la santé, veuillez contacter Sandra par courriel à : SHARRISS@uottawa.ca

Voir Saison 2 Episode 1 - Biographies et photos.docx

Dr. DeMarco talks about the use of the amyloid beta peptide and tau biomarkers in dementia and specifically Alzheimer's Disease and the results of the one arm of the Impact-AD study on clinical management. These two biomarkers are found in cerebral spinal fluid. They offer patients and healthcare providers a definitive diagnosis of Alzheimer's Disease, something that previously eluded many individuals. 

The analysis offered by Dr. DeMarco's lab at St. Paul's Hospital in Vancouver is available in Canada to consulting physicians, i.e., neurologists, geriatricians, and psychiatrists, who think that a patient who has symptoms of dementia would benefit from the test. It is not a screening test for people without symptoms.

Additional Information: 

Information about the study can be found: at https://www.impactad.org/resources.

A presentation by Dr. Demarco on what a biomarker is at https://www.impactad.org/post/2020-alzheimer-update.

For additional resources, please visit the Resource page on the Dementia Dialogue website (https://www.dementiadialogue.ca/resources-1) and choose Biomarkers from the left navigation panel.

Roche Canada sponsors this episode.

The analysis offered by Dr. DeMarco’s lab at St.Paul’s Hospital in Vancouver is available in Canada to consulting physicians, e.g., neurologists, geriatricians, and psychiatrists,  who have patients with symptoms of dementia and may benefit from the test. It is not a screening test for people without symptoms.

A presentation by Dr. Demarco on what a biomarker is at https://www.impactad.org/post/2020-alzheimer-update.

For additional resources, please visit the Resource page on the Dementia Dialogue website (https://www.dementiadialogue.ca/resources-1) and choose Biomarkers from the left navigation panel.

This episode is sponsored by Roche Canada.

Alison is from New Brunswick and now lives in British Columbia and has been doing research together with people with dementia for 30 years. As a nurse, she became very curious about what their experience was like because it was very hard for them to tell her. That curiosity and commitment have stayed with her.

Lynn grew up in Vancouver but now lives in Sydney, BC. Twenty-two years ago, she was diagnosed with Frontal temporal dementia (FTD). Since then, she has been engaged in advocacy work with people living with early stages of dementia, and is as busy as ever!

Links to

https://www.buildingcapacityproject.com/

https://www.flippingstigma.com/

Ce projet, qui a pour but de favoriser l’inclusion des personnes atteintes de troubles neurocognitifs dans nos communautés, est un partenariat entre les Sociétés Alzheimer du Canada, de la Colombie-Britannique, de la Saskatchewan et de l’Ontario.

Cliquez sur le lien ci-dessous, si vous souhaitez en apprendre plus sur le projet Canada proche allié Alzheimer!

Canada proche allié Alzheimer

(https://alzheimer.ca/fr/agissez/devenez-allie-des-personnes-atteintes-dun-trouble-neurocognitif/canada-proche-allie-alzheimer)

https://www.buildingcapacityproject.com/

https://www.flippingstigma.com/

Bill Heibein has lived with a diagnosis of dementia for 24 years. He lives near Thunder Bay and owns and operates a farm. He has been involved in many research projects with various universities and researchers. Bill decided to get involved in the DREAM project because of his interest in items like physical activity. Bill believes that physical activity is the reason he continues to live well with dementia.

Resources:

www.dementiawellnesscanada.com

Laura Middleton's contact info -  lmiddlet@uwaterloo.ca

Au printemps 2019, la mère d’Annie, l’autrice québécoise Anne-Michèle Lévesque, subit un AVC qui la laisse avec des séquelles : des troubles de mémoire, perte de langage, fatigue mentale et physique. Elle quitte donc le Québec et s’installe chez sa fille à Ashcroft en Colombie-Britannique. Son état de santé se détériore rapidement, les problèmes s’accumulent; si bien qu’en juin 2020, Mme Lévesque demande l’aide médicale à mourir. Annie doit maintenant accompagner sa mère dans ce processus.

Ensemble, nous avons parlé de son expérience en tant que proche aidante et du chemin qu'elle a parcouru avec sa mère à partir du moment où cette dernière a demandé l'aide médicale à mourir.

Lien vers la Biographie et photo d’Annie

 You may want to check out our series on Women & Dementia https://www.dementiadialogue.ca/women--dementia and listen to other episodes on this theme and check out the resources below

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/

Sandra est Québécoise de naissance et Franco-yukonnaise d’adoption. Elle est arrivée au Yukon, il y a plus de 25 ans, et est tombée en amour avec la région et ses habitants. Sandra a été proche aidante à deux reprises. La première fois, c’était il y a environ 17 ans, lorsque son père a reçu un diagnostic de cancer, et plus récemment pour sa mère qui est décédée en juillet 2022 de la maladie d’Alzheimer.

Paul Davis, quant à lui, s’est établi au Yukon en 1995. Après plusieurs années dans la fonction publique et l’enseignement, il se dévoue maintenant à la réalisation de courts métrages. Son dernier film, Le Loon Ranger des huards, a été présenté récemment au Dawson City International Short Film Festival ainsi qu’au Festival international du Film francophone de Toronto. Bien qu’il ait grandi dans une famille anglophone, Paul porte un grand amour pour la langue française qu’il étudie depuis sa jeunesse. Malheureusement, Paul et moi avons eu quelques problèmes techniques lors de notre conversation qui ont grandement affecté la qualité sonore de l’entrevue.

Sandra St-Laurent est la Directrice du Partenariat communauté en santé au Yukon.

Gestionnaire et artiste en creation littéraire, elle aime mettre à profit ses connaissances dans des milieux dynamiques favorisant la créativité et se démarquant par l’excellence et le souci d'intégrer les meilleures pratiques et l'innovation.

Au niveau de la création littéraire et des projets d'arts visuels, elle aime participer à des projets stimulants qui font appel à la créativité et la collaboration, permettant la rencontre avec d'autres artistes et auteurs du milieu. Ses spécialités incluent la santé publique; la promotion de la santé; le genre et le développement; le développement local et international; les expositions collectives visuelles; la redaction et la publication de nouvelles (adultes, jeunesse) et le haiku ainsi que la redaction et la publication de contes pour les enfants et les jeunes.

Paul Davis est un artiste en arts médiatiques qui habite à Whitehorse au Yukon. Vous pouvez le rencontrer à pied, à vélo, et en canot!

Mary is a consulting nurse who specializes in the area of emotion-based care and client centred care especially for those experiencing dementia. The Rekai Centres have been working with Mary to train staff and assist the staff developing care approaches that respond to the individual residents, their lives and familiar activities to reduce anxiety.  Mary shares examples and stories of how emotion-based care is being used to care for members of the 2SLGBTQ communities who are experiencing dementia.

The following resources can be read/viewed found through links  www.rekaicentres.com

Many LGBTQ seniors entering long-term care hide their identities. The ‘Rainbow Wing’ aims to change that | The Star

Long-term care home unveils 'Rainbow Wing' for LGBTQ2 residents in Toronto | CBC News

Is this the future of queer elder care? | Xtra Magazine

Other Cities Have Housing for Queer Seniors. Why Not Vancouver? | The Tyee

Rainbows to welcome everyone at Rekai Centre Toronto - YouTube

Comment est-ce qu’on peut repenser nos modèles de résidences pour les rendre plus accueillantes pour les aînés atteints de trouble de mémoire et leurs familles? Quels sont les détails auxquels il faut penser lors de la planification des différentes pièces qui composent une résidence pour aînés vivant avec un trouble neurocognitifs majeur? Quelle est la satisfaction du personnel soignant qui travaille dans ces nouveaux milieux?

C’est ce que nous apprenons dans le balado qui suit!

Philippe Voyer, inf., Ph.D. est professeur titulaire et Vice-doyen aux études de premier cycle et à la formation continue de la Faculté des sciences infirmières de l’Université Laval. Dans le cadre de ses fonctions, monsieur Voyer s’implique dans l’enseignement et la formation continue, la recherche et la pratique clinique. Il est l’auteur de plusieurs livres utilisés au Québec et en Europe qui se sont mérités de prestigieux prix dont le Prix du ministre de l’Éducation. Il est le chercheur principal ayant créé l’outil RADAR permettant de détecter les signes du delirium (outil maintenant disponible en 7 langues (https://www.philippevoyer.org/radar-international). Il a aussi été l’expert mandaté par le ministère de la Santé et des services sociaux dans un projet vitrine visant à transformer des CHSLD classiques en CHSLD Alzheimer. Il était aussi membre du comité mandaté par le MSSS pour produire le Plan Alzheimer et a co-présidé la création des lignes directrices québécoises sur la prise en charge des SCPD. Il est conseiller aussi pour le ministère des Aînés et des proches aidants pour la réalisation des Maisons des aînés. Enfin, il a participé à la création des Maisons l’étincelle et Humanitae qui sont des milieux de vie pour la clientèle vivant avec la malade d'Alzheimer. Ces milieux novateurs ont permis de tester diverses technologies visant le bien-être et la sécurité des résidents. Pour plus de détails :  https://www.philippevoyer.org/biographie

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/

Resources for this episode can be found under the following sections on our resource page: LGBTQ2S+

Following the diagnosis, Ruth and Maggie connected with the Alzheimer Society Southwestern Partners.  While they were well received as a same-sex couple, they realized they were the only out participants in their group. Maggie approached the Alzheimer Society to consider starting a group to support 2SLGBTQ clients and caregivers.  The first two sessions of the group had carers of 16 Alzheimer clients.

 Maggie has invited any listeners who might be interested in contacting her by email at l nanastable675@gmail.com

Resources:

Ruth and Maggie share their story in this video.

https://on.alz.to/site/SPageNavigator/ASLM/2021/Cabin_Fever/ASLM_Cabin_Fever_2021.html;jsessionid=00000000.app20058b?NONCE_TOKEN=F25504F441FB0A8DA0A27C9905683678

Dementia as an Animal

https://www.youtube.com/watch?v=ynAXxAO4pws

Alzheimer Society Southwest  Partners

https://alzswp.ca/

Ontario Alzheimer Society

https://alzheimer.ca/on/en

National Institute on Aging /Egale Canada

https://2slgbtqi-aging.ca/tag/dementia/

In part 1, Laura and Danielle lay the groundwork for understanding dementia and the caregiving role from an Indigenous perspective.

In part 2, Lisa speaks with Laura and Danielle more specifically about the Circle of Care project, the process, purpose, outcomes and challenges.

   Please go to nwac.ca/assets-knowledge-centre/30-March-CIRCLE_OF_CARE_TOOLKIT.pdf to view and download the toolkit. You may also be interested in reading other material on dementia on the NWAC website such as nwac.ca/assets-knowledge-centre/NWAC.Eng.Bk.Dementia.Stigma.pdf

Laura Alfaro was the project lead for the Native Women’s Association of Canada’s Circle of Care project. She is a researcher with extensive experience in post-secondary, community-based, non-profit, and cross-cultural settings.

    The reprise honours the launch of its "Taking it to the Streets" Campaign to 

“Shatter the silence about dementia

Creatively transform the journey of dementia for everyone

Build a world (and systems of care) in which diagnosis is not the end of life, but a starting point for joy, humanity, growth and new possibilities"

To learn more about the Coalition go to:

https://www.reimaginingdementia.com/

To learn more about the campaign, go to:

https://www.reimaginingdementia.com/blog/prtakingstreets

In part 1, Laura and Danielle laid the groundwork for understanding dementia and the caregiving role from an Indigenous perspective.

In part 2, Lisa speaks with Laura and Danielle more specifically about the Circle of Care project, the process, purpose, outcomes and challenges.

   Please go to nwac.ca/assets-knowledge-centre/30-March-CIRCLE_OF_CARE_TOOLKIT.pdf to view and download the toolkit. You may also be interested in reading other material on dementia on the NWAC website such as nwac.ca/assets-knowledge-centre/NWAC.Eng.Bk.Dementia.Stigma.pdf

Laura Alfaro was the project lead for the Native Women’s Association of Canada’s Circle of Care project. She is a researcher with extensive experience in post-secondary, community-based, non-profit, and cross-cultural settings.

Il y a environ trois ans, André a été diagnostiqué avec la maladie à corps de Lewy, une forme de trouble neurocognitif qui partage de nombreuses similitudes avec la maladie de Parkinson.

Lors de notre rencontre, nous avons parlé du diagnostic d’André, de l’impact de ce trouble neurocognitif sur leur vie et des efforts qu’ils font, chaque jour, pour rester actifs physiquement et intellectuellement, et profiter du moment présent.

Voir Balado 1 - Biographies et photos

Hélène et Sandra collaborent depuis plusieurs années maintenant à l’élaboration d’un cadre plus humain pour les services et les soins des personnes atteintes de troubles de mémoire. Ce cadre, qu’elles appellent l’approche par le plaisir©, optimise la qualité de vie des clients en misant sur leur bien-être psychologique. Dans cet entretien, Hélène et Sandra nous parlent de cette nouvelle approche et de ses impacts positifs sur les clients, les familles, les proches aidants et le personnel soignant.

Pour plus d’information sur cette approche, vous pouvez communiquer directement avec Hélène et Sandra.

Si vous êtes un proche aidant ou un organisme communautaire, veuillez contacter Hélène par courriel à : Helene.Carbonneau@uqtr.cao 

Si vous êtes un organisme du réseau de la santé, veuillez contacter Sandra par courriel à : SHARRISS@uottawa.ca

Voir Saison 3 Episode 2-Biographies et photos

Sandra est Québécoise de naissance et Franco-yukonnaise d’adoption. Elle est arrivée au Yukon, il y a plus de 25 ans, et est tombée en amour avec la région et ses habitants. Sandra a été proche aidante à deux reprises. La première fois, c’était il y a environ 17 ans, lorsque son père a reçu un diagnostic de cancer, et plus récemment pour sa mère qui est décédée en juillet 2022 de la maladie d’Alzheimer.

Paul Davis, quant à lui, s’est établi au Yukon en 1995. Après plusieurs années dans la fonction publique et l’enseignement, il se dévoue maintenant à la réalisation de courts métrages. Son dernier film, Le Loon Ranger des huards, a été présenté récemment au Dawson City International Short Film Festival ainsi qu’au Festival international du Film francophone de Toronto. Bien qu’il ait grandi dans une famille anglophone, Paul porte un grand amour pour la langue française qu’il étudie depuis sa jeunesse. Malheureusement, Paul et moi avons eu quelques problèmes techniques lors de notre conversation qui ont grandement affecté la qualité sonore de l’entrevue.

Sandra St-Laurent est la Directrice du Partenariat communauté en santé au Yukon.

Gestionnaire et artiste en creation littéraire, elle aime mettre à profit ses connaissances dans des milieux dynamiques favorisant la créativité et se démarquant par l’excellence et le souci d'intégrer les meilleures pratiques et l'innovation.

Biography for Caroline Cameron: 

Caroline Cameron is a Canadian television sportscaster known for her role as host of Scotiabank Wednesday Night Hockey on Sportsnet. Caroline also hosts the pre-game program Hockey Central and is a rink-side reporter for Hockey Night in Canada. 

Inspired by her late Grandma Shirley who lived with vascular dementia, Caroline has been involved in dementia advocacy work for many years, volunteering in seniors’ homes and participating in education and awareness campaigns. 

In 2015, she supported the Alzheimer Society of Canada’s Dementia Friends Canada initiative, and in January 2024, she was an ambassador for the Alzheimer Society of Ontario’s January Awareness Campaign. 

Read Caroline’s full story here. https://alzheimer.ca/on/en/whats-happening/news/carolines-story 

We want to hear from our Dementia Dialogue listeners. Please complete our listener survey: https://www.surveymonkey.com/r/C8QHB37

Ensemble nous avons parlé du programme Esprit en actionMD - connu en anglais sous le nom Minds in Motion©. Grâce à ce programme, la personne atteinte de troubles neurocognitifs et son proche aidant peuvent participer à des activités physiques et sociales centrées sur le développement des compétences personnelles. 

Pour plus de renseignements sur ce programme, nous vous invitons à communiquer avec la Société Alzheimer de votre région. 

C’est une cause qui lui tient à cœur puisqu’elle est proche aidante pour son père qui vit avec la maladie d’Alzheimer. 

Ensemble nous avons parlé de son rôle de proche aidante, de l’importance d’accéder aux ressources disponibles, et de la marche annuelle pour l’Alzheimer IG Gestion de Patrimoine. 

Link : Lien pour s’inscrire à La marche pour l’Alzheimer IG Gestion de patrimoine 

Matthew lives in Creemore, Ontario, and spends his time volunteering. For many years he has supported residents at a local nursing home, reading to children at the public library and most passionately, volunteering to support those living with dementia.

Matthew got involved in intergenerational activities as a young grandson whose Oma was living with dementia in another country. Since then he has been a passionate volunteer for the Alzheimer Society of Simcoe County. This May he will be volunteering for the 18th straight year as a participant in the IG Wealth Management Walk for Alzheimer’s.

Ann-Marie Kungl has witnessed Matthew’s passion and commitment to supporting those living with dementia since she became the CEO of the Alzheimer’s Society of Simcoe County. Ann-Marie speaks about the importance of intergenerational connection, programs being offered by Simcoe County and of course the upcoming Walk.

Dans ce balado, nous allons en apprendre un peu plus sur les Cafés Mémoire. Les Cafés Mémoire ont été créés dans les années 1990, par un psychologue néerlandais, dans le but de briser l’isolation et la stigmatisation des personnes vivant avec des troubles neurocognitifs majeurs en créant des occasions de rencontre et d’échange pour les personnes âgées et leurs proches aidants. 

Notre invitée, l’artiste néo-écossaise Élizabeth Sircom, est la Conseillère artistique provinciale des Cafés Mémoire de la Nouvelle-Écosse.  

Élizabeth est une artiste multidisciplinaire, elle fait de la peinture, du dessin et de la sculpture en terre cuite avec un intérêt particulier pour le portrait. Elle est également musicienne et enseigne le violoncelle. 

Nous vous invitons à découvrir les œuvres d’Élizabeth en visitant son site web au : https://www.elizabethsircom.com/.  

Pour plus d’informations sur les Cafés Mémoire de la Nouvelle-Écosse, veuillez consulter leur site web au : https://memorycafens.ca/fr/.  

Pour trouver un Café Mémoire près de chez vous, contactez la Société Alzheimer de votre région. Vous pouvez également consulter ce répertoire en ligne au : https://www.memorycafedirectory.com/ et cliquer l’onglet « Find a Memory Cafe ». 

Kate Dupuis is the Schlegel Innovation Leader in Arts and Aging at Sheridan College and the Schlegel-UW Research Institute for Aging. She is based at the Sheridan Centre for Elder Research in Oakville, Ontario and is a Professor in Sheridan’s Faculty of Applied Health and Community Studies. After receiving her Ph.D. in Psychology from the University of Toronto, Kate completed a postdoctoral fellowship in the Neuropsychology and Cognitive Health and Hearing Services programs at Baycrest and became registered with the College of Psychologists of Ontario as a clinical neuropsychologist.  

Kate is a clinician-scientist whose work lies at the intersection of arts, health, and aging. In her research, Kate seeks to understand how arts participation can benefit all domains of health and well-being for older adults and those who care for them, and she explores how to encourage and support creativity and self-expression across the lifespan. During the COVID-19 pandemic, Kate’s work expanded to explore the experiences of moral distress and moral injury in staff working in retirement and long-term care homes. She uses arts and creativity techniques to address the health and well-being of staff, with an aim towards enhanced resilience and recovery.  

Dana Zummach is the manager of Dementia Programs at the Schlegel-UW Research Institute for Aging and has been involved with the Supporting Inclusion through Intergenerational Partnerships (SIIP) project since 2019. The SIIP project reduces social isolation, and builds meaningful relationships that span across generations. SIIP works with organizations across Waterloo Region to provide opportunities for older adults living with dementia, their care partners, and youth to connect and interact in purposeful ways. Dana has over 15 years of experience in public health research, program evaluation, and project management and holds a Bachelor of Science in Health Studies and Gerontology and Master of Science in Public Health and Health Systems both from the University of Waterloo. 

In this episode, Lisa, Dana and Kate discuss several Intergenerational programs that have been supported by SIIP funding through the RIA and programs that Kate has been involved in creating and supporting through her research. They also explore why these interactions are so important and meaningful to both the young and their “grand-friends.” Many lessons were learned from the programs being supported by SIIP funding and as a result, Dana shares some best practices and how to access key resources for training purposes and also program development and/or management. Finally, some words of advice are shared about program sustainability.  

Dans ce balado, nous apprenons comment nos pensées influencent notre bien-être et comment briser le cycle de pensées négatives qui nous empêchent de vivre notre vie pleinement. 

Notre invitée est Mireille Huneault, responsable des services en français pour l’Association canadienne pour la santé mentale pour la région de Durham en Ontario. Mireille est également instructrice certifiée en premiers soins en santé mentale et enseigne une série d’ateliers qui s’intitule « Vivre sa vie pleinement ».  

In 2020, Dr. Hung received funding to create the Innovation in Dementia and Aging (IDEA) Lab at UBC. The purpose of the IDEA Lab is to bring together patients, family partners, researchers, health system planners, and students (as co-researchers) to create technology that will assist in the care of people with dementia and older adults, teach new skills, and prepare students for professional advancement.  

During this episode, Lisa and her guests speak about the inspiration for IDEA Lab, its goals and how Mario and Albin are involved as mentor (Patient engagement partner) and mentee, respectively.  They discuss the process of ideation to creation of their technology projects through patient-oriented research, that also has the added benefit of intergenerational engagement. They also speak about their motivation to get involved in IDEA Lab. Dr. Hung also speaks about the importance of inclusion in their research and making the work important for everyone, leaving no one behind.  

Beyond the research, the IDEA Lab team has built an incredible bond with each other and through their engagement, they are learning from each other, reducing stigma, and removing barriers. 

Biographies: 

Albin Soni (Research Assistant | UBC IDEA Lab). is currently a fourth year Biomedical Engineering student at UBC, with a focus in cellular engineering and medical devices. He is also a research assistant with the UBC Innovation in Dementia and Aging (IDEA) Lab. At IDEA Lab he pursues his interests in healthcare accessibility and innovation, while at the same time helping those with dementia and related conditions. As a long-term care home volunteer, he has become familiar with some of the hardships experienced by these individuals. The work at IDEA lab is so important to address these hardships. Outside of IDEA Lab, Albin can be found listening to music, hanging out with friends, and finding new foods to eat.  

Mario Gregorio is a passionate advocate to create awareness, reduce stigma and educate the public about neurocognitive disorder or dementia. He is a member of several committees that encourage inclusiveness and accessibility for people with hidden disabilities and a recognized public speaker in universities across Canada and in the United States. He is a coauthor of several research papers about digital technology and robotics and a mentor for the University of British Columbia IDEA Lab and Simon Fraser University School of Gerontology. And is actively involved with community projects to help alleviate loneliness and foster social connections. He enjoys taking pictures during his morning walks and loves gardening. 

Lillian Hung is an Associate Professor at the University of British Columbia (UBC) School of Nursing; she holds a Canada Research Chair in Senior Care. She is interested in patient-oriented research and the innovation of care for those living with dementia and their caregivers. Through the creation of the IDEA Lab, she has brought together a team of enthusiastic young students, along with patient and family partners who are pursuing innovation in dementia and aging research through co-designing of projects and sharing in the benefits of collaborative research. 

Resources for website: 

https://idea.nursing.ubc.ca/ 

During our conversation, Mona speaks about the many programs offered by AFRO to both seniors and young people in the Waterloo Region and surround areas such as Guelph. AFRO received funding from Red Cross which allowed them to create a program whereby youth would support seniors by dropping off supplies, which turned into a buddy program. The organization received further funding from the Schlegel-UW Research Institute for Aging (RIA) and the Government of Canada to create an in-person program that brings together seniors and youth.

This episode also includes a conversation with Ms. D (or Diney), a 75 year old “Senior Ambassador” at AFRO. Ms. D has become a spokesperson helping to connect AFRO with other seniors in the community, and Elise who is a student involved in AFRO. They both talk about how their relationship is mutually beneficial.

Resources:

Afrofamily.ca

Phone

(548)-889-3506

(519)-223-AFRO (2376)

Address

737 Belmont Ave. W, Suite 4

Kitchener, Ontario, N2M 1P3

About the guest:

Mona Loffelmann, Founder and Executive Director, African Family Revival Organization (AFRO)

Over the past decade, Mona has been working to ensure that all members of our community feel valued, included, and heard. In this role, she is be responsible for developing and implementing outreach programs that engage black and other marginalized groups, building relationships with key stakeholders, and working to create a more inclusive and equitable community.

Mona possesses adequate communication, organizational, and resilience skills. She is enthusiastic about her work and continues to collaborate with other organizations to provide community-oriented services. More importantly, Mona is constantly looking to collaborate with other organizations to track and measure the success of outreach efforts, making recommendations for improvement as needed.

Mona has a strong understanding of the importance of diversity, equity, and inclusion and she strives to educate others through presentations and training programs. In fact, Mona has completed a number of training programs including; “Train the Trainers Resilience Training” in partnership with Family and Children’s Services of Waterloo Region. She has also completed “Intercultural Leadership Training” with Muslim Social Services of Waterloo Region.

Mona is the Project Coordinator and Cultural Navigator for AFRO's Support Through Generations program, as well as the Executive Director of AFRO. Mona, along with the other AFRO board members, contributes to major decisions and changes that benefit the organization and community as a whole.

Ensemble, nous avons parlé de sécurité et de conduite automobile, en particulier en ce qui concerne les personnes atteintes de troubles neurocognitifs majeurs. Comment savoir quand il est temps de renoncer à son permis de conduire ? Quels sont les signes avant-coureurs que les membres de la famille et les proches aidants devraient rechercher ? Quand et comment doit-on en discuter avec son proche ?

Karine Wibrin Biographie

Karine a fait ses études en ergothérapie à l'Université de Montréal. Elle a travaillé dans divers centres hospitaliers et centres de réadaptation à Montréal. Elle a ensuite déménagé en Ontario où elle a travaillé 2 ans dans une clinique privée avec des personnes accidentées de la route. Elle travaille actuellement pour le Centre de santé communautaire Hamilton/Niagara depuis 14 ans. 

  Dr. Gordon Flett’s research on mattering highlights a crucial aspect of psychological well-being, especially for caregivers. Mattering, the sense of feeling significant or valuable to others, can greatly influence one’s sense of self-worth and overall mental health. For caregivers, this feeling of mattering can be self-generated, often through acts of giving and supporting others.  

Dr. Flett emphasizes that by valuing oneself and acknowledging the efforts of those who provide care, individuals can foster a greater sense of hope. This not only benefits the caregiver but also enhances their resilience and adaptability, which are essential traits for managing the challenges associated with caregiving. The sense of mattering can thus play a pivotal role in sustaining motivation and emotional strength in caregiving roles. 

Guest host for this webinar: Ann-Marie Kungl, CEO, Alzheimer Society-Simcoe County. 

Our Risk of Going Missing Series begins with a conversation between Dr. Noelannah Neubauer, a researcher from the University of Waterloo and Jillian McConnell, guest host and Knowledge Translation Specialist with brainXchange.  Dr. Neubauer and Jillian discuss a toolkit she and her colleagues have created to help people with dementia and their care partners understand the risks of becoming lost due to dementia-related changes as well as some helpful strategies to address these risks.  

Noelannah Neubauer, PhD, OT Reg. (AB) 

Dr. Noelannah Neubauer is an Occupational Therapist System Case Manager with Alberta Health Services in Edmonton Zone and is a part-time research assistant for the Aging and Innovation Program at the University of Waterloo, led by Dr. Lili Liu. Noelannah completed her PhD in Rehabilitation Science at University of Alberta in 2019, where she developed the Canadian Guideline for Safe Wandering. Areas of interest include community based-practice, health system navigation, dementia, aging, assisted technologies, and aging in place. 

Part One of the series is a conversation with Dr. Noelannah Neubauer, a researcher from the University of Waterloo. 

• Project Lifesaver International: https://projectlifesaver.org/  

• Project Lifesaver: Find a location near you: https://projectlifesaver.org/about-us/where-we-are/ 

• AS Ontario: https://alzheimer.ca/on/en    

Barbara Ceccarelli est Directrice générale des Centres d’accueil Héritage (communément appelé CAH), un centre de services communautaires pour personnes âgées et/ou vulnérables francophones vivant dans la région de Toronto. En plus des services qu'ils offrent à leurs résidents de Place Saint-Laurent, le CAH offre également de multiples services à la communauté tels que l’aide à domicile, un service de jour à Toronto et dans la région de Durham, un centre de vie active et une unité de soins de transition. 

Pour en apprendre plus sur le CAH et leurs services, vous pouvez consulter leur site web disponible via ce lien ou les contacter directement par téléphone en composant le 416-365-3350. 

Shabbir Amanullah, DPM (CIP), MD (NIMHANS), FRCPsych (UK), CCT (UK), FRCP (Canada), DFCPA, FAPA, FIIOPM  Dr. Shabbir Amanullah currently works at Queen’s University, Kingston as the Division Chair of Geriatric Psychiatry and Clinical Director.  He completed his DPM from the Central Institute of Psychiatry in Ranchi, MD Psychiatry from National Institute of Mental Health and Neurosciences in Bangalore and went to UK where he completed his MRCPsych and specialized in geriatric psychiatry. 

 He is currently the immediate past President of the Canadian Academy of Geriatric Psychiatry, is President Oxford County Medical Society, and serves as Chairman and Scientific Chair of the Indo Canadian Psychiatric Society. He was Programme Chair for the Ontario Medical Association section of Psychiatry and has won many awards including – The distinguished fellow of the Canadian Psychiatric Association and was honoured with the ‘Outstanding contributions to Geriatric Psychiatry award by the Canadian Academy of Geriatric Psychiatry.  

Additional resources:

Alzheimer Society of Canada: Sleep and Alzheimer’s disease:  https://alzheimer.ca/en/help-support/im-caring-person-living-dementia/providing-day-day-care/sleep  

When Sleep Becomes an Issue: Tips and Strategies: https://alzheimer.ca/sites/default/files/documents/When-sleep-becomes-an-issue_Alzheimer-Society-Canada.pdf  

Martine Michaud Dubé habite depuis plus de 50 ans dans le village de Saint-François-de-Madawaska, situé tout près de la frontière américaine, au Nouveau-Brunswick. C’est là que Martine et son mari ont élevé leur famille, travaillé et dirigé une entreprise. 

Quinze ans après avoir pris sa retraite de l’enseignement, le mari de Martine, Gérard, reçoit un diagnostic de maladie d'Alzheimer. La vie du couple et ses projets d’avenir sont changés à jamais. Ensemble, ils ont dû s'adapter à cette nouvelle réalité et apprendre à vivre pour le moment présent tout en préparant un avenir où Gérard perdrait ses facultés. 

Ensemble, nous avons discuté de la façon dont Martine et son mari ont fait face à cette nouvelle réalité, de son parcours de proche aidante et des ressources qui ont été utiles alors que le couple apprenait à vivre avec la maladie d'Alzheimer. 

Biographie Martine Michaud Dubé  

Martine Michaud Dubé est native de Rivière-Verte Nouveau-Brunswick et vit à St-Francois de Madawaska depuis 1974. Très impliquée dans sa communauté, Martine aime aider les gens qui l’entourent. Voici quelques exemples de son implication et de ses accomplissements : avoir joint le comité de l’association des loisirs, faire partie des cheftaines des Jeannettes, avoir formé un comité pour recevoir le groupe jeunesse Canada Monde en 1979-1980, co-fondatrice d’une maternelle privée, directrice de la course Demi-Marathon, volet publicité, avoir formé un comité pour l’année internationale des droits des femmes en 1976, première présidente de la chambre de commerce de St-Francois en 1995-96, co-propriétaire avec son mari de l’imprimerie moderne 1972-1990 et bénévole au foyer de soins, à la bibliothèque et pour les repas après les funérailles.  

Elle a également suivi des formations comme proche aidante et accompagnante en fin de vie. Celles-ci lui ont permis d’accompagner son mari atteint d’Alzheimer durant 8 ans jusqu’à son décès en novembre 2023. 

Notre invitée pour ce balado est Aline Moussard. Aline est neuropsychologue et gestionnaire de projet au Centre de recherche de l’Institut Universitaire de Gériatrie de Montréal, où elle étudie différentes approches préventives visant à réduire le déclin cognitif et le risque de démence associés au vieillissement. Dans son travail, elle s’intéresse aux effets de la musique et autres loisirs sur le cerveau, à la fois pour la prévention et la prise en charge des troubles neurocognitifs, tels que la maladie d’Alzheimer. 

Ce balado est le premier d’une série de deux épisodes consacrés à l’impact de la musique sur le cerveau, et, en particulier, aux bienfaits du chant choral sur les personnes atteintes de troubles neurocognitifs majeurs liés au vieillissement. 

Biographie Dre Aline Moussard  

Neuropsychologue et gestionnaire de projet au Centre de recherche de l’Institut Universitaire de Gériatrie de Montréal, Dre Moussard étudie différentes approches préventives visant à réduire le déclin cognitif et le risque de démence associés au vieillissement. Elle s'intéresse également aux effets de la musique et d'autres loisirs sur le cerveau, à la fois pour la prévention et la prise en charge des troubles neurocognitifs tels que la maladie d'Alzheimer. 

Dans ce deuxième épisode dédié à l’impact de la musique sur le cerveau, nous rencontrons la famille Chainey : André, son épouse Colette et leur fille Anik. Ensemble nous parlons de leur expérience avec la chorale et la série documentaire « Tous en chœur », que vous pouvez visionner gratuitement sur la plateforme de diffusion d’AMI Télé.  

L’objectif de cette série, produite par Sphère Média et portée par Gregory Charles, est de démontrer comment la musique peut ralentir la dégénérescence cognitive et améliorer la qualité de vie des personnes atteintes de la maladie d’Alzheimer.  

Au fil de ce balado, la famille partage comment leur participation à la série leur a permis de redécouvrir la musique comme un moyen de partager des moments forts et de renforcer leurs liens.  

In this conversation, Drs. Naglie and Rapaport explore how dementia can impact driving abilities, discuss when and how to make important decisions about continuing to drive, and when to consider if it might be time to stop. They also share alternative solutions and available supports for those navigating the challenges of dementia and driving and their family members. 

Jacinthe Savard, professeure à l’École des sciences de la réadaptation à l’Université d’Ottawa, est en train de finaliser un projet de recherche sur le test MoCA (Montreal Cognitive Assessment) qui est utilisé à travers le monde pour évaluer les troubles neurocognitifs.  

Dans cette étude, des participants francophones de divers niveaux de bilinguisme sont invités à passer le test MoCA en français et en anglais dans le but de vérifier si les résultats obtenus diffèrent d’une langue à l’autre et d’identifier les facteurs qui influencent la différence entre les deux résultats. 

Jacinthe Savard détient un baccalauréat en ergothérapie de l’Université Laval, une maîtrise en administration des services de santé et un doctorat en santé publique de l’Université de Montréal.  

Pour plus d’information sur Jacinthe et ses intérêts de recherche, veuillez cliquer sur ce lien. 

Brigitte et Sylvie se sont rencontrées pour la première fois lorsque Sylvie a accompagné ses parents lors de leur première visite au Service de jour. 

Brigitte est coordonnatrice et animatrice du Service de jour d’Oshawa pour les Centres d’accueil Héritage depuis plus de 11 ans. C'est une femme pétillante, pleine d'énergie, et passionnée par son travail auprès des personnes âgées.  

Native du Québec, Sylvie habite maintenant dans la région d’Oshawa. Il y a une dizaine d’années, ses parents ont déménagé en Ontario pour se rapprocher d’elle. Comme la mère de Sylvie avait des problèmes de santé et ne pouvait pas rester seule à la maison, elle a commencé à participer aux activités du Service de jour d’Oshawa, ce qui offrait un peu de répit au père de Sylvie. La mère de Sylvie est décédée en 2018 et c’est maintenant son père, atteint de la maladie d’Alzheimer, qui fréquente le Service de jour.