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makes perfect sense. after all, the rest of us know how vital a sense of self is. we grow up knowing innately how important the attachment to identity is. it is essential to our mental and emotional health, say the experts . and if you have ever had a crisis of identity — things like deeply questioning what you are doing with your life, your relationships, or even your spirituality — you have a good idea of the connection between identity and mental and emotional well-being, feeling safe, and even comfort in your own skin. also a part of this is the feeling of being respected and valued as a person — that our presence matters.
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most egregious, though, is our lack of effort in learning who the person was before dementia took the ability to communicate that away. (even experts agree that “b eing treated, and even feeling as a non-person, reasonably means suffering.”)
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maybe this is because there has traditionally been some debate in medical circles around how much a person with dementia actually feels and experiences emotionally. how much of their former self is carried with them as their disease progresses and do they feel respect, pride and the joy of being valued are all questions that have been studied and explored. but while measurable data has shown that people with dementia essentially lose their “self,” qualitative research has found that actually, oftentimes “parts of self remain even among persons with advanced dementia.” in fact, one study’s authors built an entire persona for people with dementia:
“those living with dementia are semiotic persons, that is, their behaviour is driven by meaning, as they, for example, have the capacity to show shame and pride and to feel concern for other persons’ well-being,” they write. “they are also relational beings and their behaviour is an effect of neuropathology, their reaction to these effects, others’ ways of treating them and their reaction to that treatment.”
these are just some of the pillars on which the hogeweyk in the netherlands was built. traditionally known as the hogeweyk dementia village — a name that makes the founders flinch because they say it’s “stigmatizing” — it focuses on providing dementia care that is deinstitutionalized. care happens in a real, authentic community with real streets, restaurants that actually serve, and take orders for food, a market where residents can buy groceries and a salon with a trained hair stylist who really cuts hair.
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elroy jespersen thought so. after caring for his wife’s aunt who struggled in the traditional institution-like dementia care structure that focused on safety as opposed to providing residents with the stuff of life — freedom, social connection and the ability to connect with their identity and sense of self — he decided to bring the hogeweyk vision to canada. the village langley opened in british columbia in 2019, with six houses, each with 12 to 13 rooms, housing up to 75 residents total. there are houses that offer assisted living with some support and others that are designed for more complex dementia cases.
in a recent story in maclean’s , jespersen describes the village as a “real community,” with homes that are nothing like what we understand assisted living facilities to be, with big windows and all the rooms that you’d expect in a typical home — a living room, dining room and a sunroom, for example. there are also double rooms to keep couples together in cases where only one has dementia, along with landscaped gardens, a general store, a barn with chickens and goats and a coffee shop — all very real, staffed with real people who provide/sell real products and services.
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it’s the “real” part that stokes jespersen, who points out that people with dementia are often treated like “a collection of needs and symptoms to manage, rather than real people with unique life stories, preferences and habits.” he refers to the importance of identity and giving people the opportunity to live with joy and purpose — to “live a life worth living.” he tells many success stories about the residents, one named don, who was a former lawyer who loved to buy groceries. the staff engaged him in the delivery of groceries to the homes, helping him have purpose, and a “reason to get up in the morning.”