machado: people with dementia don't lose their identity. so why do we care for them like they do?
dementia villages like the hogeweyk in the netherlands and b.c.'s the village langley are revolutionizing dementia care, giving residents the opportunity live with joy, dignity and purpose. sounds special, but that's the way it should be.
9 minute read
why do we continue to care for people with dementia as if their need for identity, to feel valued and have purpose fades along with the ability to remember? getty
for as long as i can remember, my dad liked to be in motion. he jogged, he lifted weights, he’d often watch the evening news on the floor doing sit-ups and leg raises as a young lloyd robertson rhymed off that day’s headlines. when we were little, my brother and i would interrupt his floor exercises to sit on his giant biceps to see who could stay on the longest before his strong flexes made us topple off.
he was in his early sixties when he was diagnosed with dementia, and though the disease slowed his memory, speech and reflexes, he kept moving. pacing in the house, walking around the block with my mom, wandering. even when, years later, he moved into long-term care — before the disease made him forget how to use his arms and legs — my dad would spend most of his waking hours in motion. he would shuffle down the hallway in his brown leather sandals, the kind with velcro straps so they were easy to take off. he’d walk from end to end, stopping to see residents in other rooms, poking his head into the dining room to watch the staff prepare the next meal and linger in the doorway of the den to watch the news before moving on.
when i visited, we’d link arms and he’d take me along for the stroll, his short jerky steps pulling me forward and making me worry that he’d fall. we’d go until we reached the locked door at one end, where he’d nod at the two or three regulars who’d be standing there trying to figure out why the door wouldn’t open. often someone would be upset that they were going to be late for work or miss a flight. then, we’d turn around and do it all again as we headed to the other end of the hallway, where there was another locked door, and invariably, another small cohort of confused and agitated people wanting to leave to pick up their child from school, buy groceries or go to the dentist.
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“it’s all part of their identity,” said one of the nurses once, after we passed her office for the fifth or sixth time. she could hear a woman at one end of the hallway asking no one in particular where the bus stop was. i told her about my dad’s pre-dementia exercise routine, describing the biceps that were no longer there, and she smiled, coming out of her office to poke at his arms and playfully compliment his dedication to fitness.
that was about the time that dorothy sauntered past. in her eighties with alzheimer’s, dorothy was a short, slight woman with shoulder-length wiry grey hair that, when it wasn’t tied in a tight bun, stood straight out above her ears in a dozen or so twirly bolts of curls. she too had a penchant for pacing, possibly a habit left over from her pre-alzheimer’s life, but there were glimpses of other things, too, clues as to the person she used to be, like asking for food from her home country of jamaica — very coherent requests for spicy curries and soft roti. whenever she saw my toddler daughter, she effortlessly switched into the persona of the doting grandmother i guessed that she used to be. i imagined that she was a hottie once upon a time — her body remembered how to swing her hips as she walked, rocking even the fluffiest pair of flannel pants while carrying a patent leather purse under her arm with a practiced sense of flair. and when it came time for the home’s annual dance party, dorothy — who didn’t know her name or what year it was — sang along to every reggae song, not missing a word or a beat.
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it was the same with many of the other residents who had dementia: the man across the hall who was a university professor who insisted on wearing a bow tie; the former nurse who felt most comfortable sitting at the nurse’s station talking about medications with the staff; and the man forced to close his accounting firm because of memory problems who always carried a calculator. they were people who, despite so much that now didn’t make sense, found clarity and comfort by clinging to the things that they knew — familiar routines, objects and phrases that had taken up so much space in their pre-dementia lives. interrupt those routines, take those familiar objects away or ignore those phrases, and you also took away important parts of their identity. it was this stuff that was keeping them grounded in world that they perceived as suddenly enveloped in complete and utter chaos. take any of it away, and the result was agitation, aggression and anger.
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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and yet, knowing this, we continue to care for people with dementia as if this need for identity, to feel valued and have purpose, fades along with the ability to remember. we run care homes that are institutional, with staff in white coats and hospital scrubs, promote physical barriers like locked doors and limited space and uphold regimented mealtimes and one-size-fits-all activities. there’s no space made for roaming “free,” acting on past memories of who you used to be or doing things that give life to your own individual sense of purpose. people with dementia are not only trapped in their brains, but they are also physically hemmed in, their movements restricted. we frown on intimacy among residents, though we know how important connection with others is to feelings of peace and calm. we also consider caregivers and loved ones secondary to their care, not including them as part of the care team, even refusing them access to their people when hospital rules dictate it.
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 “being 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.”
what this means, they conclude, is that care should include “experiences of at-homeness, dignity, and being oneself related to others.”
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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.
doesn’t that sound wonderfully like the kind of care we all deserve?
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.
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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.
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.”
of course, this almost-dreamy care concept is not cheap — building the facility alone cost about $30 million. and to operate, jespersen says the village is funded by the residents who pay monthly fees of between $8,000 and $10,000. still, it’s hard not to see the incredible value in such a venture. especially since, on average, a spot in ltc in canada — many of those spaces old, tired, and at best offering short stuffy hallways with panic-inducing locked doors — can range from $2,000 to $15,000 monthly anyway. (fun fact: more than $10.4 billion is what dementia costs the canadian economy and healthcare system, according to the alzheimer society.) certainly, it’s not easy to imagine emulating the hogeweyk and the village langley standards of care without the help of some solid public funding — although i have seen the power of advocacy groups and communities that set their sights on making change.
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time is running out, though. by 2050, there will be more than 1.5 million canadians living with dementia — and that number might include you, me, or someone we know.
it’s time to rethink dementia care in canada. after all, dignity, respect for self and identity, the ability to experience the feeling of joie de vivre no matter your cognition, and care that values you as a human should be a right, not a nice-to-have.
lisa machado is the executive producer of healthing’s advocacy & better health. she can be reached at lmachado@postmedia.com.
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