Article in NewTrail
Dementia sets lives adrift. Research is finding a better way forward. Reimagining the way we care for people
In June 2015, Megan Strickfaden, ’89 BA(Spec), ’02 MDes, and her grad student Nicole Gaudet, ’15 MSc, arrived at a little village on the outskirts of Amsterdam with a Harry Potter-ish name: De Hogeweyk. An octogenarian gentleman was visibly thrilled to see them.
This called for wine.
He took Strickfaden by the arm and squired her into the village grocery store, she recalls. He found a nice red and brought it to the till. He pulled a handkerchief from his pocket and paid for the wine with it. The clerk accepted the payment, bagged up the wine and gave the man back his handkerchief as change.
To its residents, De Hogeweyk - a dead-ringer simulation of a traditional Amsterdam village - isn’t a cutting-edge experiment at the frontier of humane dementia care. It is simply home. They cruise on tandem “cosy cycles” down the cobblestone streets. They munch pastries in the café, catch films at the cinema. They wander among gardens so cunningly designed as to appear limitless. They return to family-sized living spaces that closely match the tenor of the household they grew up in, whether country-cosy or artsy-cultural, full of music and light. Trained geriatric nurses and caregivers form a kind of stealth army of invisible support. They’re dressed not as authority figures but as shopkeepers, neighbours, friends, perhaps relatives.
De Hogeweyk’s reputation rests on what its residents don’t do, says Strickfaden. Based on her observations over two extended visits to the village, residents don’t fall as much or night-wander as much or take anti-psychotics nearly as much as comparable populations elsewhere.
“The place itself is medicine,” she says.
The discovery that environmental “nudges” can boost psychological well-being is one of the triumphs of the last quarter-century of social science. (One of its founders, Richard Thaler, won the Nobel Prize in 2017 for contributions to behavioural economics.) And design elements are psychological levers. By manipulating colours, furnishings, acoustics or the layout itself, architects can send the human mind back in reflection or forward in aspiration. They can slow a frightened heart or stoke curiosity or foster human connection.
Dementia is a syndrome, a deterioration in the ability to process thought beyond what might be expected from normal aging. It affects memory, thinking, language, behaviour and the ability to perform everyday activities.
Source: World Health Organization
People with dementia, it turns out, are especially good candidates for such interventions. “A person with dementia is suggestible,” Strickfaden says. “You work with that.”
Elements similar to the De Hogeweykian approach are being introduced in care facilities around the world. One of these is Canterbury Lane, the dementia wing of the Canterbury complex in west Edmonton. Strickfaden, a design anthropology professor in the Faculty of Agricultural, Life & Environmental Sciences, has been hired to consult on the multimillion-dollar revamp. It will include features such as a garden that allows residents access to the outdoors without having to be escorted. Hallways that don’t dead-end, but loop back into the heart of the action. Little designated spaces for purposeful activity, such as folding laundry. And a cottage system of living spaces divided by theme or feel, matched to the residents’ upbringings.
The renovations will take close to four years. Unfortunately, the resident in one room is unlikely to live to see it completed. That’s just my guess, knowing that resident quite well.
She is my mother.
More than 50 million people worldwide are afflicted with dementia right now. And since the human lifespan is increasing more quickly than medical science seems to be closing in on a cure (which is to say, not quickly at all), dementia will be part of all our stories: your story or the story of someone you love very much. “Its shadow lies over us all,” writes Jay Ingram, ’67 BSc, ’09 DSc (Honorary), in his book The End of Memory.
So what to do - beyond saying a prayer and giving power of attorney to your most trustworthy blood relative? As recently as 20 years ago, people living with dementia who could no longer manage in their homes were simply institutionalized. In that setting, doctors were authority figures and patients were the passive recipients of meds, directives - and very little in the way of treatment.
But another paradigm is emerging. Dementia treatment is coalescing around the idea of patient-centred care.
In an analysis of dementia care studies published in 2015 in the Journal of the American Geriatric Society, researcher Hannah O’Rourke, ’08 BScN, ’15 PhD, an assistant professor in the Faculty of Nursing, found four things are of central importance in working with people with dementia. A sense of place. Connection to others. A sense of purpose. And shoring up those three poles of the tent supports the fourth, which is linked to physical well-being: a sense of wellness.
So, while scientists continue their search for ways to prevent and treat the disease (See The Elusive Cure), caregivers are doubling down on tactics that promise benefits right now. Call it the “3 Ws” model of dementia care: focusing on the Where, the Who and the Why of the subjective experience of this devastating syndrome.
Our questions are everybody’s questions: what must it be like to be her? And what can we do to help make this a little more bearable – for everyone?
To family members, the hardest part to fathom about dementia is the staggering difference between Good Days and Bad Days. Good Days make you second-guess your decision to move your loved one out of their own home into extended care. Bad Days grimly confirm it.
On a recent visit, my mom positively lit up when I walked through her door. We spent a great day together, at the end of which I promised I’d be back tomorrow. Ten-kilowatt smile. But when I walked through her door the next day, she greeted me with a face that looked as if a bad fish needed taking out. “What are you doing here?” she snarled.
Mom was officially diagnosed with Alzheimer’s when she failed the “mini-mental” exam 10 years ago, at age 84. Though in truth, we noticed her slipping as early as her late 70s, one “W” after another. The “where” seemed to go first. On an Alaskan cruise, to celebrate her “80th year,” she struggled to find her way back to our cabin and had not cracked the nut even by our last day at sea.
Then the “when” became wobbly. On a visit to the West Coast, she became deeply concerned that we’d miss our flight if we didn’t leave right now. So I raced us to the airport, only to hear upon our arrival: “Why the heck are we here so early?”
Social filters fell away. Mom started making derogatory comments about people standing right next to her. She began repeating herself every 30 seconds. Sometimes she noticed herself slipping. “I feel like … I’m … not right in the head!” she’d say and she could barely contain her terror.
The changes in her reflected the brutally quixotic nature of the disease. Like a tornado through a trailer park, it destroys some faculties while leaving others bizarrely intact. On a recent visit, I told Mom it was our dog’s birthday - we were having a couple of the neighbourhood pooches over to celebrate.
“Penny,” she said, remembering the name of an animal she’d never met. “How old is she, again?”
“She’s four.”
“So, our 28,” Mom said instantly.
Sometimes my sisters and I leave the facility feeling gut-punched, yearning for the sweetness we know is in Mom to surface more often. And our questions are everybody’s questions: what must it be like to be her? And what can we do to help make this a little more bearable - for everyone?