As cases soar, ‘dementia villages’ look like the future of home care

WEESP, Netherlands – On a recent morning in this quiet village outside Amsterdam, an older woman stocked shelves inside the local supermarket. In the plaza just outside the store, a group of men sat around a table, chatting the hours away. Over in the town square, a woman in a hijab sipped coffee outside the cafe.

If it looked like a typical Dutch town – with a restaurant (which is open to the public), a theater, a pub and a cluster of quaint two-story brick town homes on a gridded street map – well, that’s the point. Many of the people here don’t realize that they are living in the world’s first so-called “dementia village,” and it can be difficult for visitors to tell the difference between the residents and the plainclothes staff.

Gert Bosscher, whose wife Anneke, received an Alzheimer’s disease diagnosis six years ago and has been a resident for nine months, said the decision to have her at Hogeweyk was an easy one. “My first impression after entering Hogeweyk was an open area, decorated with flowers, with a relaxed atmosphere in which clients and relatives were walking around freely or sitting on a terrace drinking a cup of tea,” he said. “To be honest, at that moment I had made my choice already.”

Since 2009, the Hogeweyk, which sits on 4 acres in the Amsterdam suburb of Weesp, has aimed to “emancipate people living with dementia and include them in society,” according to its website. The community, which is funded by the Dutch government and currently serves 188 residents in 27 houses, marked an evolution from traditional nursing homes – the authors of the 2020 World Alzheimer Report called it a “paradigm shifter” – by offering residents (and their families) humanized care that feels more like home.

“You don’t want to be locked in for the rest of your life, you don’t want to live the rhythm of the organization,” said Jannette Spiering, a founder of the Hogeweyk. “You want to make your own choices. You still want to go on living, but you need support.”

Residents at the Hogeweyk, all of whom suffer from severe dementia, move about the village freely and interact with fellow patients. They also interact with the trained staff – nurses, doctors, psychologists, physiotherapists and social coaches – who far outnumber the residents and blend into the community’s daily life. At the supermarket, for instance, residents can buy food, shampoo or a postcard, but no real money is exchanged and the cashier is trained to care for people with dementia. The homes, which house six or seven residents, come with a living room, kitchen, private bedrooms, a laundry room and outdoor space, and professional support is available day and night. New residences become available only when a resident dies.

Over the past decade, as the number of dementia cases has exploded worldwide, more “dementia villages” and senior “microtowns” have opened across the world. But experts worry that if the senior-care community is going to keep pace with diagnoses, there will have to be another major paradigm shift, and quickly.

In essence, they want the Hogeweyks of the future to not just resemble real towns, but to be real towns.

When the Hogeweyk first opened its doors, there were about 35 million people living with dementia around the world, according to Alzheimer’s Disease International, a nonprofit federation of Alzheimer and dementia associations. Today that number is more than 55 million, and the World Health Organization expects it to reach 78 million by 2030. (The WHO describes “dementia” as a term covering several diseases that affect memory, thinking and the ability to perform daily activities. Alzheimer’s disease is the most common form.)

“The numbers are increasing because the population size is increasing, and the population is aging,” said Dr Tarun Dua, who heads the Brain Health unit at the WHO’s Department of Mental Health and Substance Use. “This is not something that is going to go away.”

The report, which Dua helped compile, warned that the medical community is “far behind finding a cure for dementia by 2025,” a goal set out in 2013 at the London Dementia Summit.

“It’s a massive issue,” Spiering said. “Society really has to step up.”

To meet the moment, a number of facilities around the world – many inspired by the Hogeweyk’s “dementia village” – are working to push the model forward by further integrating dementia villages with their surrounding neighborhoods.

“People want to remain at home, they want to live in the community,” Dua said. “I think this is an important message. So even if we think in terms of dementia villages, how close they are to the community – that’s very important. They should be part of the community, rather than outside of it.”

In Baerum, Norway, a municipality in the suburbs of Oslo, the Carpe Diem dementia village opened in 2020. It was conceived as a pilot project to handle the anticipated strain on the senior-care community in Norway, where the number of people living with dementia, roughly 100,000, is expected to double by 2050, according to a study published in the Journal of Alzheimer’s Disease.

Like the Hogeweyk, Carpe Diem uses its 4.4-acre built environment – two- and three-story buildings in varying shades of brick and wood – to create a contained civic space where residents can roam freely, with supervision. There is an urban square, landscaped spaces, a looping path and a “street” with a pub, a salon and a boutique. The complex, designed by the Nordic Office of Architecture, comprises 136 communal housing units and 22 high-care dementia units.

“The biggest difference, maybe, between Carpe Diem and other nursing homes is that we bring and invite the local society into our village,” Anne Grete Normann, village manager at Carpe Diem, said in a video about the project.

Local neighborhood residents can participate in activities there, dine at the restaurant, get a haircut, or simply walk the manicured grounds.

“Having an open village means a lot, both to those who live there and to those who come to visit,” Normann said in an email. “The fact that more than just relatives come into the community means that more people become familiar with dementia and life with dementia. We hope to achieve less stigmatization of this group in society in general.”

The local municipality is now in the planning stages of a new nursing facility that further blends into everyday life in the nearby town of Rykkin – set to include a children’s nursery on the same site.

Trude Schei, project leader from the municipality, said that the local government wants dementia patients to be able to “live safely at home” for as long as possible, even when “home” is actually inside the nursing facility. “This involves creating good and attractive local community centers so that those who live at home get what they need in their local environment,” she said.

Half a world away in the town of Bellmere, Australia, NewDirection Care at Bellmere describes itself as the world’s first “microtown” dementia community. Residents live in what resemble typical single-story homes – there are 17 in four styles, with seven residents per home. The town center includes a corner store, cafes, a salon and a cinema.

“It’s very much like a suburb in Australia,” said Natasha Chadwick, the facility’s founder and CEO.

This “microtown” is fully inclusive, mixing dementia patients, including younger ones suffering from early onset dementia, with senior residents who haven’t been diagnosed with dementia.

“The fact that residents lived in houses with just six other residents was a huge plus for me,” said Elsie Marion Scott, 93, who has lived at NewDirection for just over five years and does not have a diagnosis of dementia. “I also have a GOPHA,” she said, referring to a three-wheeled electric scooter, “and I’m able to go up to 7-Eleven and soon Woolworths when I choose.”

Functioning as micro-communities within the community at large, facilities like NewDirection Care at Bellmere act as steppingstones for integrating those living with dementia into society at large.

“One of the reasons why we created the microtown to have a mix of residents living within it is that we start to really associate with the external community,” said Chadwick, who was previously the executive officer for Australia’s National Association of Nursing Homes and Private Hospitals. “So there’s no difference. We’ve already got lots and lots of people coming in and out of our microtown. They use the cinema, they use the cafe, all of that.”

Her next step is to mix in more residents at a planned high-rise community that will house younger residents as well as “someone who might be living with severe dementia as well as someone who might be having a physical disability,” she said. “So it’s really going to just be a microcosm of the general community.”

As yet, there are no dementia villages in the United States, apart from a Hogeweyk-inspired dementia-care day center in South Bend, Indiana. But one is in development in Holmdel, New Jersey, with plans to open its doors in the next two to three years.

Designed by Perkins Eastman, an architecture firm based in New York, Avandell will comprise 15 homes in a farmhouse aesthetic, to reflect the rural surroundings. The suburban-style community is set to include a town center with a grocery store, bistro and community center.

“It’s all about normalizing life for people who have a dementia diagnosis,” said Larry Carlson, the founder of Avandell, who recently retired as CEO of United Methodist Communities, a faith-based nonprofit that provides housing and services for seniors across New Jersey.

Preparing for the future has been baked into the model. Along with homes for 105 residents, there is a planned neurocognitive clinic and a senior resource hub, both of which will offer their services to the general public. Family members will be offered training to better care for their loved ones at home, “so that we can reach the wider population and this large number of people who are going to be confronting this,” Carlson said.

But he warned that the effort could be more difficult in the United States, where the costs will fall primarily on individuals rather than governments. “People had been reticent to do it in the US because it’s a private-paying market,” he said, “as opposed to Europe, which is all socialized medicine.”

In low- and middle-income countries where there may not be resources to build these stand-alone facilities, the community-based approach could be the way of the future.

“If we’re thinking about the scalability of such models, there are various opportunities that these principles can be used,” Dua said. “Something that can be part of the communities, which is focused on a better awareness of everybody in the community, training of the staff that can help in providing that support.”

For those with severe dementia who need extra support, the traditional dementia village will continue to have its place, said Paola Barbarino, CEO of Alzheimer’s Disease International and a member of the World Dementia Council.

“But not at the cost of shutting people living with dementia outside of the community,” said Barbarino, who lamented the “huge amounts of stigma” still attached to the condition. “Because we still think that having people in the community, with a community that is informed about their condition and what they are experiencing, it can help them live a better life.”

Spiering, the Hogeweyk founder, agrees, but the real challenge, she said, is a major cultural shift. “It is not a challenge, actually, to create something like this,” she said. “The more challenging thing is to create a society where people are really included, whatever label or diagnosis they have.”

This article originally appeared in The New York Times.