Dementia Support Group - Additional Information and Resources

Additional Information and Resources: 

The Dementia Society of Ottawa has the ability to provide coaches as well as various activity packages which may be useful to continue to connect with our loved ones Here is the link for this resource: https://dementiahelp.ca/activities/lending-library/ 

We’ve started talking about a Care Planning Checklist for Caregivers and these are divided into three sections. The first one is for the early stages and is useful to help everyone cope with changes. Here’s the link from the Dementia Society: https://dementiahelp.ca/wp-content/uploads/2022/04/Care-Planning-Check-List-Early-Stages-2.pdf The second one is for the middle stages. Again, here’s the link: https://dementiahelp.ca/wp-content/uploads/2022/04/Care-Planning-Check-List-Middle-Stages-2.pdf

You may enjoy a podcast called Let’s Not Be Kidding featuring Gavin Crawford.  It is a seven-episode story of his journey with his mother through her experience with Alzheimer’s https://www.cbc.ca/listen/cbc-podcasts/1387-let-s-not-be-kidding-with-gavin-crawford  

We can also recommend a CBC Doc called The Caregivers’ Club, a candid and intimate portrait of three caregivers, each taking care of a spouse or patient with dementia. https://www.cbc.ca/cbcdocspov/episodes/the-caregivers-club  

We would like to be able to provide you with some items for your reading pleasure as well. We are starting with Still Alice by Lisa Genova as well as One Good Thing by Alexandra Potter. We’ve run across a book entitled Life Giving Dementia Care by Toni Kanzler. This is not an endorsement by any means but purely recommended for your enjoyment. 

Lastly, we talked about Go Wish cards, cards which are conversation starters for difficult topics, most especially end of life conversations. These can be found at https://codaalliance.org/go-wish/

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.