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Inside a Dutch 'dementia village,' where the whole neighborhood is designed for memory loss

The Hogeweyk provides a sense of "normalcy" for people living with dementia.

Photo credit: Canva

People with dementia can roam freely in a dementia village.

Living with dementia is not easy, nor is living with someone living with dementia. No matter how much caregivers may want to keep a loved one with dementia in their home, it's not always feasible. But moving them into a traditional care facility isn't always ideal, either.

That's where a "dementia village" comes in as an alternative. Instead of trying to fit a person with dementia into a living situation that either isn't designed for them or is overly focused on their limitations, a dementia village is an environment designed specifically to help people with severe dementia feel safe and free and live as normal a life as possible.

dementia, dementia care, alzheimer's disease, dementia village, memory carePeople with dementia tend to remember distant memories and forget recent ones.Photo credit: Canva

The Hogeweyk was the world's first dementia village, founded in 2009. Since then, the idea has been replicated in dozens of locations all over the world. The concept is quite simple: A full, self-contained neighborhood where people with dementia can walk around freely without fear of getting lost, where everyone from shopkeepers to restaurant servers to salon workers are trained in dementia care, and where people who are losing their memory to dementia diseases are treated as people who still have aspirations.

Eloy van Hal, one of the founders of the Hogeweyk, explained to Vox how the guiding principle of the village is "normalcy." Traditional nursing homes keep all residents under one roof, and they are subject to whatever program the institution provides for them. In the Hogeweyk, people live in small groups of six or seven in apartments with furnishings like they'd have at home. Distinct landmarks in the public space help residents know where they are, and putting a theater, grocery store, barber shop, etc. in separate buildings encourage movement through the neighborhood.

"It's about choice, choice, choice, where you want to be during the whole day and with whom," said van Hal. The idea is to balance safe design with controlled risk, allowing for as much of a normal life as possible.

- YouTubewww.youtube.com

The one downside to the village concept, of course, is cost. Without adequate funding assistance from governments, living in a dementia village can be prohibitively expensive.

Does it really make a difference for residents, though? Has it been proven that outcomes are better than traditional care models? With dozens of villages now being used around the world, research is ongoing but the data from the Hogeweyk is promising. People in the comments of Vox's by Design video shared how such facilities have been life-changing for their loved ones and how traditional care doesn't always meet the needs of people with dementia.

"My grandmother had dementia and when her caretaker who was my grandfather (her husband) passed unexpectedly we had to scramble to get her into a memory care facility in the US. The first place she was in temporarily was so sad, I could see her spirit drain but after about a year we were able to get her into a "village" and the quality of life difference is nothing short of ASTOUNDING! She could function in a way that was familiar and comfortable to her and not be in a foreign hospital setting. The abrupt change from a home where they are familiar, to a clinical setting must be very disorienting and upsetting to these people. That side of my family had mental health issues and memory loss starts early, so I know it will happen to me to some extent and I only hope I can have people take care of me as well as in this Hogeweyk."

"I've worked in a nursing home through high school and college. While I can't say it was the worst place for dementia patients, it certainly did not work well for all of them. One patient once tried to wedge herself through the door begging to go outside with me and I even had patients confide in me that they hated being institutionalized, they missed being able to live a normal life, being part of a real community, and being able to come and go as they pleased. This concept is probably the closest thing possible to a normal life a dementia patient could ever have."

dementia, dementia care, alzheimer's disease, dementia village, memory careAll the workers in a dementia village are trained in memory care.Photo credit: Canva

"A relative of mine used to get aggressive, violent and angry when she would encounter a locked door in the institution she was in. She couldn't understand why there would be a locked room in what she understood to be 'her home', this would take a lot of calming down and management, only for her to discover another locked door, and kick off again. I love these village based models as they allow autonomy for residents, and have an individual experience. Just because someone has a brain disease doesn't mean they aren't entitled to the very best care. I hope the govt spends far more on these establishments in the future."

"As he said at the end, people with dementia are still people—even if there is proven to be no benefits to this model over a care home, I would much prefer to have dignity in my final days than live in a clinical trap. Love all the incredible ideas the Netherlands come up with."

Dementia care is something Americans are going to have to look at closely. According to The Alzheimer's Association, the number of people living with Alzheimer's is set to nearly double from seven million to 13 million by the year 2050. As more of our elders require full-time care, the more we'll have to consider prioritizing putting resources into things like dementia villages.

Everyone deserves safety and a good quality of life. The Hogeweyk is a great example of what it looks like to view people with dementia as people first and to care for them accordingly.

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Older, out, and infinitely proud: a look inside a lifesaving LGBTQ senior home.

Our LGBTQ seniors deserve better. Finally, more people are paying attention.

As a transgender woman, 65-year-old Eva Skye knows firsthand that living her truth means living in danger too. Three years ago, the only home she had was at a single room occupancy housing facility, or SRO, for those living in poverty. There, she often chose to trek up several flights of stairs to her fifth floor room instead of taking the elevator out of fear she'd be trapped and assaulted by other residents.

When I talk to Skye, her brightness fills the room with color. She's rocking a hot pink top, flashy blue fingernails, and a rainbow bracelet wrapped around her left wrist. "I’m a 65-year-old trans-queer punk mom," she explains in a gentle voice, brushing back hair dyed the color of rosé wine.

Eva Skye. Photo by Robbie Couch/Upworthy.

It's amazing what a difference a few years can make. Skye's quality of life has improved dramatically since 2014, when she moved out of the SRO and into Town Hall Apartments on Chicago's north side, one of the country's few LGBTQ-inclusive affordable housing centers for seniors.

But not every LGBTQ senior is that lucky.

Pushed back into the closet

In contrast to young Americans — a demographic coming out as LGBTQ earlier in life and in larger numbers — data and discouraging anecdotal evidence suggest LGBTQ seniors are retreating into the same closets they once escaped years prior to avoid discrimination today — whether it be at the hands of their peers, as in Skye's case, or at the hands of a senior care industry that carelessly erases them.

An alarming 2010 study discovered just 22% of LGBTQ seniors felt comfortable being "out" to health care workers. Many respondents had been harassed or refused basic services because they were LGBTQ; some, incredibly, reported being told that they were being "prayed over" or that they'd "go to hell" because of who they loved or how they identified. Instead of facing these abuses, many LGBTQ seniors said it was easier to simply blend in — even if it meant becoming invisible.

Photo by Scott Olson/Getty Images.

Elderly LGBTQ people are far more likely to live alone and far less likely to have adult children they can rely on as they age compared with their straight, cisgender peers. There's a greater chance they'll end up in nursing homes, where this type of discrimination can take place. Staff members at such care centers often don't even believe they have LGBTQ residents — not because that's actually the case but because residents often choose not to come out in such uncertain conditions.

A safe place to grow old

Walking through Town Hall's cafeteria during lunch, the nurturing, jubilant atmosphere feels worlds apart from the findings of that 2010 study.

The cafeteria in the Center on Addison. Photo by Robbie Couch/Upworthy.

Through the Chicago Housing Authority's Property Rental Assistance Program, Town Hall has been providing studio and one-bedroom apartments to low-income seniors — most of whom identify as lesbian, gay, bisexual, transgender, or queer — for over three years.

"Seniors, as they get older, tend to want to go back into the closet," confirms Todd Williams, senior services manager at the Center on Addison, which provides many programs to Town Hall residents. "They suffer from isolation, and they feel as though they can’t necessarily be themselves in their own communities."

Eugene Robbins, another Town Hall resident, understands that struggle well. Before moving in three years ago, he'd been living in a housing project a few miles away where being gay and black had its challenges to say the least.

As a proud man of color born in Selma, Alabama — where, he recalls, white supremacists threw bricks through his family's home windows — he avoids trudging through too much past heartache. But Robbins acknowledges the stains discrimination has left on his life: "As the old saying goes, when your back is against the wall, you'd be surprised at what you can do," he reflects on his time in the housing project.

"I’m happy here," he says of Town Hall. "I feel good here."

Eugene Robbins (left) and Marti Smith (right). Photos by Robbie Couch/Upworthy.

At Town Hall, residents gush about their improved lives as if the apartments were their grandchildren's straight-A report cards. Skye says living in her top-floor studio apartment, with Lake Michigan just beyond view, makes her feel like Alice in Wonderland. Marti Smith, a 72-year-old "card-carrying lesbian," considers herself "extremely lucky" to have landed there and credits Town Hall and its programs with saving her life.

Smith survived throat cancer in the late 1990s. It wasn't just a health setback, it was a financial one too. The cancer's many lingering effects were considered pre-existing conditions and — long before Obamacare — deemed her uninsurable. Smith racked up credit card debt to pay for the necessary care.

The apartments' affordable rates, along with a bevy of center services that help residents manage external costs, are invaluable. Smith has used almost every program offered through the center, she says — free of charge, of course. Residents with ailments like Parkinson's disease and juvenile diabetes — even 30-year AIDS survivors — have benefited greatly from the Center on Addison, Smith notes. "There's no way that I could ever pay back what I have gotten," she says.

Books line the wall at the Center on Addison. Photo by Robbie Couch/Upworthy.

The building's refurbished hallways, where rainbow flags and smiling faces welcome you around most corners, makes Town Hall feel like a queer oasis, safe from the systemic challenges waiting outside. The Center on Addison, which operates on the building's first floor, offers innovative programs and experiences to residents, from those more focused on socializing and well-being — like yoga, trips to the theater, and genealogy classes — to less fun (but certainly just as critical) services — such as help managing health care benefits and job readiness workshops. Programs at the center are open to LGBTQ nonresidents who live in the Chicago area too.

Scaling success beyond Chicago

Outside groups have toured Town Hall and the Center on Addison in hopes of replicating its success elsewhere, Williams says. Locally, the apartments have become astoundingly popular among seniors hoping for a coveted studio or one-bedroom: "We no longer have a waiting list," he notes. "The waiting list was so long, we actually couldn’t [continue it]."

That's the sobering punch that complements touring Town Hall: There's overwhelming demand for more places just like it and nowhere near enough facilities to accommodate. Queer seniors, with their unique needs, are more likely to live in poverty; in Chicago alone, roughly 10,000 LGBTQ seniors could potentially benefit from affordable, queer-inclusive housing. With its 80 apartment units, Town Hall simply isn't enough.

Town Hall's outdoor terrace overlooks Chicago's Lake View neighborhood. Photo by Robbie Couch/Upworthy.

Fortunately, more doors are opening for people like Skye, helping queer seniors close the closet doors for good. Along with Town Hall, facilities in cities like Philadelphia, Minneapolis, and San Francisco are blazing trails for the often overlooked demographic within the LGBTQ community; New York City is in the midst of building its first two queer-inclusive centers as well — one in Brooklyn, one in the Bronx.

"Pandora’s box has been opened," Skye says of her new take on life after moving into Town Hall. "Look out world, here I am."

If only every LGBTQ senior could say the same.

Family

Caring for her grandma revealed an underappreciated task almost all caregivers have to do.

When Miles Taylor was a teenager, she and her little brother moved in with their grandma Betty, who essentially became a single parent at nearly 80 years old.

An untenable family situation prompted the change, which Betty took in stride. It was a move that must have taken some "grit and guts and probably a real fine-tuned sense of humor" on Betty's part, says Taylor.

Taylor is now a sociologist at Florida State University. She says Betty, who died in 2015 at the age of 100, was a huge influence in her life. Betty was resilient, quick-witted, compassionate, and could at times be incredibly stubborn (as the doctor who tried to get Betty to stop eating candy learned). "And she had an unbelievable capacity for love," says Taylor.

Miles Taylor and her grandma Betty. Photos used with permission.

As Betty got older, she started needing some extra help, and Taylor was there to contribute.

"It was small things in the beginning," Taylor says. "She needed help putting up a Christmas tree. Then, as she got a bit older, she needed help with getting groceries delivered." Taylor, her brother, friends, and neighbors all helped out.

Then, in 2011, when Betty was about 96, she fell and broke a bone in her back. Taylor knew that from then on, Betty would need a lot more than just help with the Christmas tree, so she stepped into the role of Betty's full-time caregiver.

In 2015, about 1 in 7 American adults served as caregivers for someone over 50, according to an AARP report.

The numbers are even higher if you count those taking care of other recipients, like adults or children with injuries or disabilities. Many of these caregivers are pretty young as well — about a quarter are under 35.

Although many people feel positively about being caretakers, it can be physically, mentally, and emotionally tough work. In fact, there have been many studies and papers about the stresses of being a caretaker.

Most of these studies have focused on the caregivers' relationships or on the stresses around very personal tasks (such as helping people bathe). But when Taylor stepped into this role, she realized there was another, huge aspect of a caregiver's job — one she had known about but couldn't have predicted how stressful it'd be.

Navigating the health care system blindsided Taylor.

Handling Betty's personal care was one thing, but Taylor was surprised at how much time she had to spend just figuring out the health care system. Even as someone who had time and a bit of inside knowledge, it was really difficult.

For example, Taylor knew if Betty was ever to get mobile again after the fall, she'd need rehab to help with strength and balance. But a snafu with how the hospital had listed Betty on their charts meant her insurance wouldn't cover rehab. It took weeks to fix.

"It was very frustrating," Taylor says. Over and over again, she experienced similar issues.

Though Taylor says she was never disappointed in the care Betty received, many of the various institutions — hospitals, insurance agencies, care services — were fragmented. They didn't communicate, which meant the job of sorting everything out fell to Taylor.

When Taylor talked to other caregivers, many of them felt the same way.

Now Taylor has published a paper she hopes will help reveal this invisible workload.

As she cared for Betty, Taylor found support in her friend and colleague Dr. Amélie Quesnel-Vallée of McGill University in Quebec. Quesnel-Vallée was also caring for an older family member — her mother. And though Quesnel-Vallée lives in Canada, they found a lot of similarities in their experiences.

Together, they wrote a scientific paper informed by their own experiences as caregivers, published in The Gerontologist. They're hoping researchers and policymakers will take notice and maybe even make some long-term changes.

"It's important those caregiving hours and that caregiving stress is recognized," says Taylor.

But they also had a message — not just for health care professionals, but for other caregivers too:

"On the more personal side of things, a message we'd like to send out to caregivers themselves is they're not alone," says Taylor.

The AARP report suggested that most caregivers in the U.S. are stepping into this caregiver-plus-case-worker kind of role. It's important for caregivers to know that although it's often invisible, their work is valuable and valued.

Caregiving is hard, often invisible work. Through sharing stories like this, we can help bring it into the light and give it the attention and credit it deserves.

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