One morning in this quiet village outside of Amsterdam, an elderly woman was stocking the shelves at the local supermarket. In the square directly in front of the store, a group of men sat around a table and talked about the past hours. Over in the town square, a woman in hijab was drinking coffee in front of the cafe.
If it looked like a typical Dutch town – with a restaurant (open to the public), a theatre, a pub and a cluster of quaint two-story brick townhouses on a gridded street plan – then that’s the point. Many people here are unaware that they live 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 was diagnosed with Alzheimer’s six years ago and has been a resident there for nine months, said the decision to place her in Hogeweyk was an easy one for him. “My first impression after entering Hogeweyk was an open, flowered area with a relaxed atmosphere, with customers and relatives walking freely or sitting on a terrace having a cup of tea,” he said. “To be honest, at that moment I had already made my choice.”
Since 2009, the Hogeweyk, which is located on a four-hectare site in the Amsterdam suburb of Weesp, has set itself the goal of “emancipating people with dementia and including them in society,” according to its website. The community, which is funded by the Dutch government and currently has 188 residents in 27 homes, marked an evolution from traditional care homes – the authors of the World Alzheimer Report 2020 called it a “paradigm shift” – by offering residents (and their families) Offers made ) humanized care that feels more like home.
“You don’t want to be locked up for the rest of your life, you don’t want to live to the rhythm of the organization,” said Jannette Spiering, a founder of Hogeweyk. “You want to make your own decisions. You still want to live, but you need support.”
The residents of the Hogeweyk, who all suffer from severe dementia, move freely in the village and interact with their fellow patients. They also interact with the trained staff – nurses, doctors, psychologists, physiotherapists and social workers – who far outnumber the residents and are involved in the daily life of the community. In the supermarket, for example, residents can buy groceries, shampoo or a postcard, but no real money is exchanged and the cashier is trained in caring for people with dementia. The homes, which sleep six or seven residents, have a living room, kitchen, private bedrooms, laundry room, and outdoor space. Professional support is available day and night. New apartments only become available when a resident dies.
Over the past decade, as dementia cases have exploded worldwide, more “dementia villages” and senior “microcities” have opened around the world. However, experts fear another major paradigm shift will have to occur quickly if elder care is to keep up with diagnoses.
Essentially, they want the Hogeweyks of the future not just to resemble real cities, but to be real cities.
When the Hogeweyk first opened its doors, approximately 35 million people worldwide were living with dementia, according to Alzheimer’s Disease International, a non-profit coalition of Alzheimer’s and dementia associations. Today that number is more than 55 million, and the World Health Organization projects it will reach 78 million by 2030. (WHO describes “dementia” as a term that encompasses a variety of diseases that affect memory, thinking, and the ability to perform day-to-day activities. Alzheimer’s disease is the most common form.)
“The numbers are going up because the population is increasing and the population is aging,” said Dr. Tarun Dua, who heads the Division of Brain Health in the WHO Division of Mental Health and Substance Use. “This won’t go away.”
The report, which Dr. Dua warned that the medical community is “far behind in finding a cure for dementia by 2025,” a goal set at the 2013 London Dementia Summit.
“It’s a huge problem,” Ms. Spiering said. “Society really needs to make an effort.”
In response to the current situation, numerous institutions around the world – many inspired by Hogeweyk’s “Dementia Village” – are working to advance the model by further integrating dementia villages into their surrounding neighbourhoods.
“People want to stay at home, they want to live in the community,” said Dr. dua “I think that’s an important message. Also when we think of dementia villages, how close they are to the community is very important. They should be part of the community and not outside.”
In Baerum, Norway, a municipality in the Oslo suburbs, Carpe Diem dementia village opened in 2020. According to a study published in the Journal of Alzheimer’s Disease, the number of people living with dementia, which is about 100,000, is expected to double by 2050.
Like the Hogeweyk, Carpe Diem uses its 4.4-hectare built environment—two- and three-story buildings in varying tones of brick and wood—to create an enclosed public space where residents can roam freely under supervision. There is an urban square, landscaped spaces, a circular walkway and a ‘street’ with a pub, salon and boutique. Designed by the Nordic Office of Architecture, the complex includes 136 community living units and 22 dementia high care units.
“Perhaps the biggest difference between Carpe Diem and other care homes is that we bring and invite the local community to our village,” said Anne Grete Normann, village director at Carpe Diem, in a video about the project.
Local residents can participate in activities there, dine at the restaurant, have their hair cut, or simply stroll the manicured grounds.
“Having an open village means a lot, both to those who live there and to those who come to visit,” Ms Normann said in an email. “By bringing more than just family members into the community, more people with dementia and living with dementia are being introduced. We hope that this group will be less socially stigmatized.”
The local community is currently in the planning phase for a new care facility that will fit in better with the everyday life of the nearby town of Rykkin – a kindergarten will also be built on the same site.
Trude Schei, project leader for the municipality, said the municipality wanted dementia patients to be able to “live safely at home” for as long as possible, even if the “home” is actually within the care facility. “This includes creating good and attractive local community centers so that those who live at home can get what they need in their local area,” she said.
Half a world away in the town of Bellmere, Australia, NewDirection Care at Bellmere bills itself as the world’s first ‘micro-town’ dementia community. Residents live in typical one-story houses – there are 17 in four different styles with seven residents per house. In the city center there is a corner shop, cafes, a salon and a cinema.
“It’s very similar to a suburb in Australia,” said Natasha Chadwick, the facility’s founder and managing director.
This ‘micro-city’ is fully inclusive, uniting dementia patients, including younger ones suffering from early onset dementia, with older residents who have not been diagnosed with dementia at all.
“The fact that the residents lived in houses with only 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 has not been diagnosed with dementia. “I also have a GOPHA,” she said, referring to a three-wheel electric scooter, “and I can ride up to 7-11 and soon Woolworths if I want to.”
As micro-communities within the wider community, facilities such as NewDirection Care in Bellmere act as stepping stones to the integration of people with dementia into society at large.
“One of the reasons we created the micro-city to have a mix of residents is that we’re starting to really connect with the outside community,” said Ms. Chadwick, previously executive director of Australia’s National Association of Nursing Homes was and private hospitals. “So there is no difference. We already have many, many people going in and out of our micro-city. They use the cinema, they use the café and all that.”
Her next step is to mix more residents into a proposed high-rise development that will accommodate both younger residents and “someone who may have severe dementia, as well as someone who may have a physical disability,” she said. “So it’s really just going to be a microcosm of the general community.”
To date, there are no Dementia Villages in the United States, save for a Hogeweyk-inspired daycare center for dementia care in South Bend, Indiana. However, one is under development in Holmdel, New Jersey, and is scheduled to open in the next two to three years.
Designed by Perkins Eastman, a New York-based architecture firm, Avandell will consist of 15 farmhouse-style homes that reflect the rural setting. The suburban settlement is to include a town center with a grocery store, bistro and community center.
“It’s about normalizing the lives of people diagnosed with dementia,” said Larry Carlson, the founder of Avandell, who recently retired as executive director of United Methodist Communities, a faith-based nonprofit that provides housing and services for providing seniors throughout New Jersey.
Preparation for the future is built into the model. In addition to homes for 105 residents, a neurocognitive clinic and a senior resource center are planned, both of which will offer their services to the general public. Training will be offered to family members to better care for their loved ones at home “so that we can reach out to the broader population and this large number of people that are facing this,” Carlson said.
However, he warned that the effort could be more difficult in the United States, where the costs would primarily fall on individuals rather than governments. “In the US, people have been reluctant to do this because it’s a privately paid market,” he said, “unlike in Europe, where it’s all socialized medicine.”
In low- and middle-income countries that may not have the resources to build these self-contained facilities, the community-based approach could be the way of the future.
“When we think about the scalability of such models, there are different ways to use these principles,” said Dr. dua “Something that can be part of the communities and focuses on raising awareness of everyone in the community and training the staff who can help provide that support.”
For people with severe dementia who need additional support, the traditional Dementia Village will continue to have its place, said Paola Barbarino, executive director of Alzheimer’s Disease International and a member of the World Dementia Council.
“But not at the price of excluding people with dementia from the community,” said Ms Barbarino, who bemoaned the “huge stigma” still associated with the disease. “Because we continue to believe that when people are in the community, in a community that is informed about their condition and their experiences, it can help them live better lives.”
Ms. Spiering, the founder of Hogeweyk, agrees, but the real challenge is a major cultural shift, she said. “Actually, it’s not a challenge to create something like that,” she said. “The bigger challenge is creating a society where people are truly included, regardless of the label or diagnosis they have.”