Laurie Toby Edison

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A Clue to Rethinking Dementia Care

Debbie says:

I don’t know when I’ve been as excited by a new concept as I have by this one (okay, I was just as excited by the article from last week’s links about Arunachalam Muruganantham), but this is very different and equally important.

… in the small town of Weesp, in Holland—that bastion of social progressivism—at a dementia-focused living center called De Hogeweyk, aka Dementiavillage, the relationship between patients and their care is serving as a model for the rest of the world.

floor plan of the village

The interior of the security perimeter is its own little village—which means that patients can move about as they wish without being in danger.

“The fact that a resident cannot function ‘normally’ in certain areas, being handicapped by dementia, does not mean that they no longer have a valid opinion on their day to day life and surroundings,” say administrators.

Thanks to Stefanie for the link!

The Gizmodo article at the link starts by talking dementia statistics: basically, the problem is already staggering and is growing by leaps and bounds. And the baby boom generation is just touching the leading edge of the age cohort in which this is a problem. We cannot afford current styles of dementia care as a culture, and we certainly cannot afford it as individuals–nor can we afford the intense emotional suffering of both people with dementia and people who love them.

I haven’t been around advanced dementia much. I watched my sister-in-law’s mother go down that road; I’ve seen the occasional other person while visiting nursing homes or hospitals. I fear it for myself more than anything else. I sometimes look at my friends around my age and wonder, “Which ones, which ones?” And until I saw this article, I had never seen a model, or even a hint, for compassionate, potentially affordable approaches to care.

Hogeweyk was … the brainchild of Yvonne van Amerongen, a caregiver who has worked with memory patients for decades. Starting in the early 1990s, van Amerongen and a group of like-minded caregivers began researching and designing a type of home where residents would participate in life, the same way they did before they entered a dementia care unit.

What Hogeweyk reveals … is the culturally-ingrained way we distinguish between those who do and don’t suffer from dementia. By treating residents as normal people, Hogeweyk seems to suggest that there isn’t such a huge difference, deep down—just differing needs. By designing a city tailored to those unique needs, residents avoid the dehumanization that long-term medical care can unintentionally cause.

According to the article, the idea is spreading at least a little: to Switzerland, maybe to more of Europe, maybe to the U.S. I’m crossing my fingers.

One Response to “A Clue to Rethinking Dementia Care”

  1. Adelene Says:

    It’s worth mentioning that most places of this sort habitually try to gaslight the patients into thinking they’re not institutionalized, which is still pretty darn problematic even if it’s not as directly traumatic as more restrictive institutions. The jury is still out on whether that sort of self-doubt makes dementia progress faster (I expect so, given what we know about mental exercise being protective and gaslighting making people less inclined to try to figure out confusing situations on their own), but even if it doesn’t – well, I actually know someone who was in a psychiatric version of this sort of thing and a few traditional institutions, and she’s very clear that the former was actually the worse thing to go through, largely because of the gaslighting but also because it was much more isolating, in that other people were much more skeptical when she tried to explain how it was still bad.

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