Planning for Dementia
This article was first published in the Minden Times in May 2025.
When dementia comes calling on you or someone dear to you, what’s your plan?
I say ‘when’ not ‘if’ because the numbers say it’s likely: Alzheimer’s Canada says in Jan1/25, 771,939 Canadians were diagnosed with dementia, and because age is the best indicator of probability and we are a greying demography, that number will grow exponentially. Furthermore, that number reflect people who are diagnosed with dementia, and those of us with lived experience know that the disease is well on its way long before it’s diagnosed.
So it makes sense to think about what our options are when dementia comes knocking.
Maybe there’ll be a cure by then, or at least some intervention that buys time. Maybe there’ll be a miraculous increase in the quantity, quality and scope of community-based and residential care options. Maybe they’ll be affordable to the common folk.
But maybe not.
But if, as appears most probable, we will be left to manage as best we can, what can we do?
I recently visited, as part of an academic study group, two Green Care Farms (GCFs) in the Netherlands, two examples of many variations in that part of the world of non-medical approaches to day-care programs and residential homes for people with dementia. They validated most of what I thought I’d learned caring for my husband as he slid into dementia and died, at home, in his own bed, with but not of dementia.
I always thought he wasn’t that far along in the illness because until the week before his death, he managed what the system calls Daily Living Activities. People (their word for residents or patients) in GCFs were medically assessed at Stage 5 of dementia (requiring 7/24 supervision) to be eligible for funding. They tended to manage their daily lives in the embrace of the GCF community – where the philosophy was to do ‘with’ not ‘for’ -- until about a week before they took to their beds and died.
They tended to sleep well, attributed to having had a full day of taking care of business, outdoors when weather permitted, but always engaged in meaningful activity and exposed to nature.
Aggression tended to be manageable by adapting circumstances to avoid triggering anger or frustration. Injuries from falls were rare, in part because residents, even when doddering, had stronger muscles and better balance because of their active life. But also because people expected and paid attention to dicey situations.
Surveillance was managed by fitting those with a tendency to go walkabout with a GPS monitor, and more importantly, making human sense of the behaviour. Care-givers accepted the need to visit, to go places, to walk (in a culture much more walk-oriented than ours). They kept an eye on progress, and when the person stopped or the staff figured they’d be reaching the limits of their stamina, someone would get in a vehicle and fetch them, and they’d be happy to return home.
And ‘home’ (for a couple years on average before dying in their bed) was an intentionally created and nurtured community. People typically came to day-care for months, maybe years, until making a seamless transition into full-time living in the community when it became necessary, whether because of diminished capacity on their part or that of their living circumstances. One of the GCFs was developing suites on site for caregivers to rent, so they didn’t have to maintain two living accommodations, could lead an independent life with easy access to their person -- and doubtless, with propinquity, increase their contribution to the community’s life.
Could we provide a GCF option here in Canada? The major impediments is culture: we seem dedicated to prolonging life regardless of its quality (complicated re dementia by the difficulty a person with dementia has with articulating quality). My favourite GCF’s organizing principle was that every day should be filled with joy and purposeful activity, i.e. that life should be lived with the pleasure of purpose until we die. Like the cycle of nature. That particular GCF had a wait list for participants (not surprising) and for staff (as unusual there as here). They prioritized hiring people who looked happy and were willing to un-learn. They vigorously protected their work culture with everyday, granular repetition to ensure that every component of the community was marching to the same live-till-you-die drumbeat.
It's a good drum-beat for any of us. The flipside of my sense of validation that I had done a pretty good job of creating the conditions under which my husband’s dementia didn’t prevent him from having a good final chapter is that I’m not as scared of dementia as I was. I know the plan.
