Gentle Into That Good Night

11 minute read

From the outside, Hogewey looks every bit the residential-care facility it is. Located 16 km southeast of Amsterdam, the low brick building is undistinguished by any architectural flourish besides the long concrete ramps that lead to its door. But step through Hogewey’s doors and you might feel as though you’ve stumbled upon a vacation village in Florida. A tree-lined pedestrian boulevard features a cozy café, a grocery store and a hair salon. Hogewey’s restaurant, kitted out with plush banquettes and a backlit bar, is good enough that people in the surrounding town of Weesp go out just to dine there. The staff members dress in their own clothes, and the residents stroll freely through the facility’s “town” center.

Hogewey is where most of those 152 residents will spend their final years. All of them suffer from advanced dementia, a disease that progressively damages and destroys brain cells, robbing patients of their memory and other cognitive functions before eventually killing them. It is often a cruel and heartbreaking way for a life to end. It is also an increasingly common way to die: each year around the world, 7.7 million people are diagnosed with dementia, a category that includes Alzheimer’s disease. And that number is only going up as life expectancies rise, especially in the burgeoning economies of China and India. By 2050, 135 million people will be afflicted with dementia. Alzheimer’s is the sixth leading cause of death among Americans, and 1 in 3 people in the U.S. over the age of 60 dies either from or with some form of dementia. And despite the billions of dollars being poured into research around the world, there is no cure in sight.

That leaves governments, the health care industry and families whose loved ones are suffering from dementia with no choice but to find ways to make living with the disease easier for patients and their caretakers. “Dementia is a massive, worldwide problem, and everyone is seeking solutions for it,” says Jannette Spiering, Hogewey’s director. “Our solution is to let people have normal lives.”

Most countries and regions of the world have failed to adapt quickly enough to the coming epidemic, in part because the disease is stigmatized and in part because government funding in most countries has been directed largely toward medical research rather than public policy. But as the dimensions of the problem come into clearer focus, a search for treatments is no longer enough: much as with climate change, the scope of the disease will demand social adaptation. “Alzheimer’s is like cancer or Parkinson’s,” says Gesine Marquardt, a researcher at Dresden University of Technology who specializes in architecture for dementia patients. “A cure may not be delivered for many years. And in the meantime, we need to focus on the quality of life.”

In Europe, they are beginning to do just that. Innovative projects like Hogewey are at the vanguard of the continent’s efforts to find a way for members of its aging population to live full lives even as their minds begin to fail. Many European countries are still struggling through debt crises and budget cuts, but policymakers, gerontologists, architects, urban planners and designers are nevertheless starting to expend significant resources and effort to make European societies more accommodating to people with dementia. The push to adapt is in part a legacy of the welfare state that exists in most European countries. Just as citizens assume their governments will provide child care for their newborns and education for their adolescents, so too are they coming to expect humane care in their dotage.

That emphasis has, in some cities, led to the design of nursing homes that are better tailored than more traditional facilities to the specific needs of Alzheimer’s patients. Clear floor plans — not the disorienting loop of many nursing homes and hospitals — and signs that indicate a room’s purpose can help residents find their way. But even more significant is reducing a facility’s scale. “In a large institution, the resident is often very passive, the object that receives care,” says Marquardt. “In small-scale residences, they are more empowered to have care tailored to their needs, for example by participating in cooking or being able to go outside. Evidence shows that their relatives come to visit more often too.”

These ideas are transforming dementia residences throughout Europe. (The Beatitudes home in Phoenix is a rare example in the U.S.) But much of the innovation in Alzheimer’s care is going on outside nursing-home walls, as consensus grows among experts that the best treatment for dementia sufferers is to allow them to stay in their own homes for as long as possible. “About three years ago, we started working with the idea of creating dementia-friendly communities,” says Jeremy Hughes, CEO of the Alzheimer’s Society, one of Britain’s leading dementia-focused charities. “Too many people go into residential care earlier than they need to because they’re isolated at home and their carer cannot cope with their needs. But if communities become more supportive of dementia, they can stay home longer.”

British Resolve
One of Europe’s most concerted efforts to help dementia sufferers remain in their own homes is under way in the U.K., where more than 20 towns and cities — spurred in part by a public challenge that Prime Minister David Cameron issued in 2011 — have embarked on dementia-friendly initiatives. The demand is urgent: roughly 800,000 Britons out of a population of 63.2 million suffer from the disease, and that number is expected to rise to over a million within the next seven years, along with the cost of caring for people with dementia. “The U.K. spends £23 billion a year caring for dementia sufferers,” says Hughes. “So awareness is growing of the cost of not supporting them in the most effective way.”

What does it mean for a community to become dementia-friendly? Initiatives vary from place to place, but all are intended to help sufferers more easily find their way around their surroundings — often through improved signage — and maintain their social networks. Inspired by Japan’s Caravan Mates initiative, an awareness-raising project that has so far taught 4.4 million Japanese to recognize and assist dementia sufferers, they frequently include efforts to educate local service providers — shopkeepers, bankers, bus drivers — on how to better respond to someone with dementia. “We’ve been working with Lloyds Bank, for example,” says Hughes, referring to the British bank, “on how the financial sector can become more dementia-friendly. It involves training their people so that they know how to respond to someone who comes into a high-street branch and can’t remember their PIN.”

The English town of Haxby, located 8 km north of York, is finding out what it means for a whole community to adapt to dementia. A few years ago, the Aroma Coffee Shop, run by the local Methodist church, began noticing that caregivers — the children or spouses of people suffering from dementia — would frequently drop off their loved ones at the café for an hour or so while the caregivers did some shopping in town. “We realized staff and ourselves didn’t know much about [dementia], so in March 2012 we offered a three-week learning opportunity for locals to come and find out more,” says Corinne Brown, who helped manage the café and oversees its caregivers’ group. The course covered topics like understanding how to live with dementia and how to improve life for caregivers. “And we had loads of interest — we were overbooked.”

From there, the project grew. Working with the nonprofit organization Dementia Forward, the café trained its staff to effectively assist the dementia sufferers who stopped by — everything from helping someone who couldn’t remember why she was at the counter to giving proper care to someone who became aggressive. Other businesses in town became sensitive too — local doctors began advising patients of the café’s services, and the library began keeping users’ library cards in-house.

All of this has made it easier for Peter Jones, a 73-year-old retired architect who was diagnosed with dementia four years ago, to maintain his independence and live a life as close as possible to the one he had before his diagnosis. “Peter can walk down into the village by himself. He can go into the [supermarket]. He doesn’t have to know where things are,” says his wife Avril, 72. “He can go to a member of staff and say, ‘I have dementia. Can you help me?'” Her husband looks on, nodding in agreement. “And it works, because I’ve tried it,” he says.

Counting the Cost
Relying as they do on a mix of state and private funding — and the work of volunteers — these kinds of community initiatives come cheaper than traditional institutionalization. That’s an important concern when the worldwide cost of caring for dementia patients clocks in at an annual $604 billion. “If dementia care were a country,” says the 2013 World Alzheimer Report, which is published by the organization Alzheimer’s Disease International, “it would be the world’s 18th largest economy.”

And with those costs spiraling as the population ages and dementia cases increase, governments have economic motivation to find alternatives. Just how much motivation was on display in December when, for the first time, the G-8 held a special summit in London on dementia, the first health-related summit since former British Prime Minister Tony Blair hosted a similar meeting on HIV/AIDS in 2005. The world’s leading economies agreed at the summit to “significantly increase” the funding each devotes to Alzheimer’s research.

But with no cure in sight, a consensus is emerging among those who work with the elderly that for both financial and health reasons, enabling people with dementia to remain in their homes for as long as possible is the best practice. And when that’s no longer possible, Hogewey is there as a model for what is achievable.

Twenty years ago, the facility was a normal nursing home — “one of those Eastern European concrete blocks,” in the words of its director — that cared for patients at all stages of dementia. “But we started asking ourselves, ‘Is this the kind of care we would want for our mothers and fathers?'” says Spiering. “And we were ashamed that the answer was no.”

Today there are no wards or long, anonymous corridors at Hogewey. Each resident lives with six or seven other “housemates” in apartments that, with their brightly colored floral wallpaper and cozy sofas, look like ordinary homes. No one is bedridden, and each resident participates in daily chores like shopping and cooking to the extent that his or her illness allows. Instead of being organized by the degree of residents’ disability, homes are grouped on the basis of their occupants’ former lifestyle — a recognition that patients are individuals, with their own backgrounds and values. The “urban” (for city-dwelling professionals) and “homey” (for former stay-at-home moms) are the most popular living arrangements, but there is also one — complete with a brightly colored silk cloth on the dining table and batiks on the wall — for those who lived in the former Dutch colony Indonesia.

Does this new form of care really help dementia sufferers? Hogewey, which reopened in its new, enlightened form in December 2009, provides only anecdotal evidence so far — including early statistics suggesting that residents there tend to live longer than in other nursing homes, despite the fact that they enter with dementia that is already quite advanced. But Elly Goedhart, whose mother lives at Hogewey, is in no doubt about its positive effects. “As long as there’s no wonder pill for Alzheimer’s, Hogewey is the next best thing,” the Amsterdam resident says. During the eight years after her mother Gerardina Witteveen first received a diagnosis of Alzheimer’s, she watched as Witteveen began forgetting dates and names and then gradually became unable to recognize her family. Today, Witteveen cannot take care of herself or even speak. But Goedhart is convinced her mom is as happy as she could be at Hogewey. Witteveen still occasionally buys fruit and cookies at the grocery store, and she enjoys going outside every day.

It is, admittedly, a limited solution, and like most of us, Goedhart (who is in her 50s) holds out hope that a cure for Alzheimer’s will be found before she gets to the age when it most commonly strikes. “It’s still a terrible disease,” she says, as she sits at Hogewey’s outdoor café on an unusually warm January day. “But this place makes me a little less scared of it.”

with reporting by Kharunya Paramaguru / Haxby

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