Living with Dementia?
Monthly Meeting: August 27th at 7:00 p.m.
Please feel free to invite family and friends. All are welcome.
Upcoming Topics:
· Home Help
· Listening
· Journalling for Caregivers
· Field Trip to the Dementia Society to try out games and toys
· Appropriate Responses
· Driving
July 2025:
What a great meeting we had in July. It was so much fun seeing one another again and talking about dancing with dementia. While we had a few technical hiccups, we watched a trailer for the OCO Dancing With Dementia program as well as the initial warm ups for this program. This was created by the Ontario Caregiver’s Organization in conjunction with the National Ballet School and provides exercises done either standing or seated. The biggest lesson was that this doesn’t reduce the person to their diagnosis. As usual, Pauline and Jeanie led us very ably through these discussions and had some wonderful tips and resources which they shared with us.
June 2025:
What a great meeting we had in June. It was a time of catching up with one another, taking the pulse of how our summers are progressing and discussing what we would like to see as topics for upcoming meetings. As usual, Pauline and Jeanie led us very ably through these discussions and had some wonderful tips and resources which they shared with us.
Tip of the Month 2025
February: Playlist: Stronger Together
March: Play “Canoku” (like Sudoku but with Canadian icons)(https://www.canucklegame.ca/canoku/) or “Canuckle” (like Wordle)(https://www.canucklegame.ca/)
April: Challenge Dementia Stigma This Alzheimer’s Awareness Month (https://dementiahelp.ca/dementiaaware/)
June: Music plays such a big part of our memories. If you prefer a specific artist or genre of music, share this with your friends and family so there is no guesswork when you are unable to communicate your tastes to others.
July: Make a mix tape for your loved one. This will reflect their tastes and will spark some lovely memories as well as providing a shared experience for both caregiver and loved one. It has been determined that group listening brings about a synchronization of brain activity.
Educational Resources 2025
February: Our topic for the month is dealing with the stigma which surrounds a dementia/Alzheimer’s diagnosis. Our resource is Flippingstigma.com. In addition, there is wonderful information at https://alzheimer.ca/en/about-dementia/stigma-against-dementia
March: We continued our discussion of stigma which surrounds a dementia/Alzheimer’s diagnosis and learned about the Defy Dementia podcast (www.baycrest.org/podcast). In addition, Pauline suggested we check out www.changeltcnow.ca This is associated with CARP.
April: We had the pleasure of speaking with Dr. German Chique-Alfonzo, Director of Education and Programs at the Dementia Society of Ottawa and Renfrew County. He spoke further about the stigma associated with a dementia diagnosis and pointed out the five areas where these can manifest itself. As a resource, he recommended studying the World Alzheimer Report 2024 (http://www.alzint.org/resource/world-alzheimer-report-2024/)
July: I Heard There Was a Secret Chord: Music As Medicine written by Daniel Leviton. Yes, this is a paean to Leonard Cohen’s song of the same name. Here’s what Thriftbook had to say:
Music is one of humanity's oldest medicines. From the Far East to the Ottoman Empire, Europe to Africa and the pre-colonial Americas, many cultures have developed their own rich traditions for using sound and rhythm to ease suffering, promote healing, and calm the mind.
In his latest work, neuroscientist and New York Times best-selling author Daniel J. Levitin (This Is Your Brain on Music) explores the curative powers of music, showing us how and why it is one of the most potent therapies today. He brings together, for the first time, the results of numerous studies on music and the brain, demonstrating how music can contribute to the treatment of a host of ailments, from neurodegenerative diseases such as Parkinson's and Alzheimer's, to cognitive injury, depression, and pain.
Levitin is not your typical scientist--he is also an award-winning musician and composer, and through lively interviews with some of today's most celebrated musicians, from Sting to Kent Nagano and Mari Kodama, he shares their observations as to why music might be an effective therapy, in addition to plumbing scientific case studies, music theory, and music history. The result is a work of dazzling ideas, cutting-edge research, and jubilant celebration. I Heard There Was a Secret Chord highlights the critical role music has played in human biology, illuminating the neuroscience of music and its profound benefits for those both young and old.
In addition, here’s the link for the OCO Dancing With Dementia program: https://www.youtube.com/watch?v=knPfjARYkJc&ab_channel=OntarioCaregiverOrganization%28OCO%29
Additionally, here is the link for the National Ballet School sharing dance with older adults: https://www.nbs-enb.ca/dance-for-life/sharing-dance-older-adults/
Articles:
Deb very kindly sent an article from the Toronto Star and we have "translated" it below.
Toronto Star Article dated today, May 25, 2025
What I Learned About Life And Death
Do “with” rather than “for”. Find purpose and joy in every day. Live ‘til you die. These are the three principles for delivering a good death with dementia that I learned in a recent visit to two Green Care Farms in the Netherlands. These farms were small, privately owned businesses in rural Netherlands, adjacent to small settlements. They provide care to people when their dementia requires 24-7 supervision, and all-day, every week-day, daycare for the months or years prior to requiring residential care as a respite and on-boarding strategy. My visit validated everything I thought I’d learned caring for my husband at home as he drifted through dementia to death, including that he was further along in the disease than the medical world recognized because he managed “Daily Living Activities” until the week before he took to his bed and died. That he was never “as bad” as the horror stories of late-stage dementia may mean, to some extent, our culture creates the conditions that nurture the horror caregivers report. If we plunk people with diminishing cognitive capacity in a strange and sterile environment that restricts their physical independence and impose schedules and procedures that neutralize their individuality, can we be surprised if they come angry, frustrated, dehumanized and unmanageable? If we do indeed create the conditions that nurture a slow and pathetic decline, it is because our culture denies death. We position death as an event best postponed, hopefully avoided entirely. In nature, which is the omnipresent “green” ingredient in Green Care Farms, death is the absence of life, as dialectical and liminal as day becoming night, warm becoming cold, good becoming bad. If we embrace death as a normal part of life, it makes sense to live fully, whatever that means, in the moment. The mantra in the Green Care Farms was to enable every person, staff and person with dementia alike, to find joy and purpose every day, in any way that presented itself. They interacted with nature – weather, plants, animals, soil. They interacted with each other in a holistic, humanistic, non-hierarchical way. They shared work, food, cleanup, laughter, frustration. The formula for finding joy and purpose in life was for staff to do “with” not “for.” As anyone who has raised a toddler knows, this requires time and patience. An adult can tie shoelaces in a jiffy, but allowing a child to tie their own shoes nurtures independence and self-reliance. It feeds personhood. If old age is the downside of the hill of life, why not adapt some strategies that were useful on the way up? Both stages are preparation for life – we just don’t know much about the life after death. The majority of persons resident in Green Care Farms carried on their daily routines until they lay down, for about a week, and died. The lived ‘til they died. They had a quick decline and a good death. How often can we say that about people with dementia in our culture? I like the idea that the persons with dementia who seemed to decide the time had come and do death deftly were taking responsibility for that transition.. Perhaps they were as self-confident as youth who successfully launch into adulthood. Perhaps they believed that joy and purpose could be found equally, perhaps more easily, on the other side of the portal. That was certainly the impression my husband’s peaceful passing made on me. But what about all the bad behaviours we “know” are associated with late-stage dementia? Wandering, aggression, waiting to be elsewhere, not eating, not sleeping, progressive physical frailty. As in my personal experience, these symptoms seemed minimal and managed in GCFs. And, as in my experience, tended to be interpreted by my medically-oriented companions in these visits as proof the persons with dementia weren’t that far along in the illness. We know children’s behaviour is highly influenced by their environments, that they behave quite differently at home, in school and with peers. Why should such responsiveness to circumstances be different when cognition is on the other side of the developmental curve? We could manage people with dementia much better by applying these three lenses – do “with” rather than “for”, find purpose and joy in each day, live until you die – to each aspect of our care for them. But will we?
Fay Martin, MSW, PhD, has advocated and organized for social justice including appropriate housing throughout her adult life.
Additional Information and Resources
We are anxious to serve your needs and would love to hear from you. Please contact Pauline Schneider (gas@swcp.com), Jeanie Hicks (jh1948@hotmail.com) or Laura McGregor (ljm90star@gmail.com) for further information or to be added to our invitation list. We look forward to seeing you on the 27th.