A Glimpse Into the Future of Long-Term Care: Dementia Villages

Dementia and Alzheimer’s disease continue to be a major global health problem. Today more than 55 million people live with dementia, and WHO expects that number to reach 78 million by 2030. According to experts in the field, the medical community is very far behind their goal to find a cure — or even an effective battery of treatments — for dementia by 2025, a goal set out in 2013 at the London Dementia Summit. As the population living with dementia grows, experts say, there isn’t only a need for new medical interventions: There’s a need for new kinds of care, and certainly, for alternatives to long-term care.

“In portraying the absolute devastating nature of this disorder — in making the claim that biomedical research was going to be the answer — there’s a way in which they make caregiving like an afterthought,” Jess Ballenger, a historian of Alzheimer’s, said in an interview on the podcast, 99% Invisible. “In all of this discourse, care becomes second class. It becomes the thing you do because we’ve failed to have something really effective.”

“In portraying the absolute devastating
nature of this disorder — in making the
claim that biomedical research was going
to be the answer — there’s a way in
which they make caregiving like
an afterthought.”

The good news: Around the world, dementia care facilities that do not fit the traditional mold are opening their doors — and in some cases, their village gates. “Dementia village” is the term used to describe these open-air living communities, where residents move about the property freely. From the outsider’s perspective, these communities could pass for a normal small town.

The first facility of its kind, a dementia village called Hogeweyk was established just outside of Amsterdam in 2009. Since, it has been a monumental case study in how to disrupt and reimagine long-term residential memory care. 

According to Jannette Spiering, a founder of the Hogeweyk, the intention of opening such a facility is simply to give residents dignity in their care and a sense of normal life. 

“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,” Spiering told the New York Times in a 2023 deep dive into this now global trend. “You want to make your own choices. You still want to go on living, but you need support.” 

Hogeweyk provides its 188 residents with a sense of normal life in many ways. It has its own square, theater, post office, and restaurant. Residents and staff all dress in normal clothes. Residents can move around Hogeweyk’s four acres and socialize freely, with the safety measure that cameras monitor residents all day, and while it feels like a real-life village, the layout is notably different in terms of access and egress: There is only one door in and out of the facility. 

At Hogeweyk, residents live in houses of six or seven people, often with others who share similar interests, and have around the clock care provided by someone trained in dementia care for their house.

Hogeweyk may have been the first memory care community of its kind, but today, it’s far from the only one. In the past nearly 15 years, the global rise of dementia villages — from elsewhere in the Netherlands, across Europe, the U.S., and all the way to Australia — provides hope that alternative care centers could become the norm in the future. 

Boosting public education, reducing stigma around dementia

In Baerum, Norway, Carpe Diem dementia village follows a similar humanized care approach to Hogeweyk and opened its doors in 2020. Local neighborhood residents can come to Carpe Diem and participate in activities including getting a haircut and eating at Carpe Diem’s restaurant. Through this, the facility also acts as a way to educate the broader population about dementia and provide hands-on experience interacting with people living with dementia. 

“We all know that story because it’s been told so many times through the media,” Ballenger said on 99% Invisible podcast of Alzheimer’s disease’s immediate association with stories of loss and grief. “But it’s the story of someone in the prime of life who’s cut down by this terrible disease. That is part of the meaning of Alzheimer’s as a dread disease that we must combat – we must fight – in the same way we have a war on cancer.”

Experts are even considering creating on-site nurseries to integrate younger generations and expanding dementia villages to include people living with other disabilities as a larger caregiving facility under the same practices. 

Reducing anxiety through curated communities

In Bellmere, Australia, another such community, NewDirection Care, has a focus on socializing the residents with locals living in the town through their cafe open to the public. “Those residents are living in a normal home, and they have a fully-functioning kitchen, fully functioning laundry, lounge rooms, dining areas,” Natasha Chadwick, founder and CEO of NewDirection Care, said in a video on NewDirection’s website. “It’s just like living at home again.”

Reporter Marion Renault visited Hogeweyk and toured the facility while interacting with residents. “They installed a system of doorbells for private rooms and forbade staff from entering until after they’d rang the bell. And they shrunk the wards from 30 or so people down to groups of ten or 11 neighbors,” reporter Renault said of his visit to Hogeweyk on 99% Invisible podcast. “Hogeweyk residents benefit from a unique architectural concept: rings of privacy. In public places, like the courtyard, they’re in the outermost ring-total exposure. Just by sitting down, they can encounter dozens of passing strangers and friends.”

Improving quality of life by enabling independence

And now, the first residential project of this kind in the United States is currently underway: Avandell in Holmdel, New Jersey is being developed by the non-profit United Methodist Communities and built by architecture firm Perkins Eastman. It will be home to 105 residents with dementia, who will live in 15 homes within the village. The community will feature a salon, restaurant, grocery store, town center and health club.

Residential communities like this can give people a greater sense of independence, and the ability to move around their community freely, without sacrificing safety or care.

According to Dr. Paul Newhouse, director of Vanderbilt University’s Center for Cognitive Medicine, in a past ABC News interview, these environmental approaches to treating dementia’s cognitive and behavioral symptoms are “really the key” to improving quality of life without relying on prescription symptoms management medication, which can each come with detrimental side effects — and can sometimes pose a danger if inappropriately dosed or combined.

What’s next for this emerging approach to memory care?

A big roadblock in instituting dementia villages is the cost. In Europe, where socialized medical systems are the norm, it has been easier for these villages to come about: Hogeweyk, for example, was primarily funded by the Dutch government and cost around $25 million to build. The government continues to subsidize the living cost for residents and the monthly fee is capped at $3,600 per month, with a scale based on family income. 

Experts say in a non-socialized healthcare system facilities like this are far less common. 

“People had been reticent to do it in the U.S. because it’s a private-paying market,” Avandell founder Larry Carlson told the New York Times, “as opposed to Europe, which is all socialized medicine.”

The costs associated with care facilities will be an ongoing issue in dementia care. A study in 2019 estimated that the annual global societal costs of dementia would be some $1,313 billion for the more than 55 million people living with dementia in the U.S. — or nearly $24,000 USD per individual. Some part of that cost is being driven by prescription medications. Some experts feel new approaches to care can help address this impending financial and care gap.

“I do think that many of the ways in which we provide care today in the U.S. for people with dementia do not focus on care, but they focus on other issues. You know, maintaining regulations, all kinds of other things,” Dr. Tia Powell, American psychiatrist and bioethicist, told WBUR. “And we have forgotten about freedom and joy, which doesn’t have to be that way.”

Lauren Fetten lives in Los Angeles and is a graduate of Scripps College where she studied Economics and Chinese.