upworthy

alzheimer's disease

Community

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.

This article originally appeared in April.

From Your Site Articles
dementia care
Wellness

Doctor shares 'dementia whiteboard' daughter wrote for mother

Philip Grimmer/Twitter

Anyone who's had a relative or friend with dementia will know just how destructive the group of diseases is. The condition can impair memory, communication, focus, reasoning, and visual perception, transforming a sufferer into what can seem like an entirely different person in a matter of seconds.

Dr. Philip Grimmer, from Wiltshire in the United Kingdom, was visiting one of his patients with the disease when he saw the words of reassurance written on a whiteboard by a daughter to her mother that he decided to share on Twitter.

"Words of reassurance left for an elderly lady with dementia by her daughter," Dr. Grimmer explains. "A simple white board left in her sight line in her sitting room. Helped to reduce constant anxious phone calls."

The white board reads:


Your meals are paid for

You're okay

Everyone's fine

You are not moving

No-one else is moving

Keep drinking,

it will help your memory

You don't owe anyone any money

You haven't upset anyone."

Dr. Grimmer's tweet attracted over 40,000 likes and 7,000 retweets. Dr. Grimmer explained to the BBC that he'd initially posted the tweet to share it with his colleagues. "I'd not seen anything like it before in thousands of house visits. It's caring, reassuring and sensible - it's just such a simple idea," he added.

Other social media users took the opportunity to share how they help those suffering from the disease.



Dr. Grimmer's image was also posted on Reddit, where it received more than 112,000 upvotes.

Reddit user Kryptosis suggested that "you can use the bathroom whenever you like" be added as a former relative with dementia believed they couldn't use the bathroom.

Hailley, a nurse from Canada, added:

"I had one resident where I worked who would be in tears because he was worried about his children and having to pay for his meals."

"It was sometimes tough to reassure him. We had to call his children to talk to him a few times. It was hard to see him so upset."

She expanded on her comment for the BBC:

"I have seen people talk down to those with dementia, which is just not right. They are still adults who know when they are being treated differently.

"People just do not know how to interact with them. It takes patience and you may not be able to have a conversation with them in the same way you would with someone without dementia.

"The whiteboard addresses what gets asked the most [by those] in long-term care."

From Your Site Articles
Related Articles Around the Web
well-being
Wellness

Revolutionary 'Department of Future Aging' transformed a German town for its elders

Photo by Steven HWG on Unsplash

The world is getting older, and it's getting older quickly. In 2019, there were approximately 700 million people aged 65 and older. The UN predicts that the number will more than double by 2050. In the U.S., the Census Bureau estimates that retirement-age residents will outnumber children for the first time in the nation's history by the 2030s.

Clearly, helping the aging population live their later years with as much comfort and dignity as possible is a growing concern. And one German town is serving as an example of how to create a community where the elderly can thrive.

According to Reasons to be Cheerful, it all started in 1995 with a survey of 28,000 people aged 50+, exploring their wishes and expectations for their latter years. What the city of Arnsberg discovered was that aging residents wanted to participate in social life, actively contribute to society, continue learning, and—most importantly—not live alone.

Previously, Arnsberg had taken a "deficit-oriented" approach to its elderly population, focusing on what they couldn't do instead of what they had to offer.

Today, the city sees its aging residents totally differently, in large part thanks to its Department of Future Aging (DFA). That's right. In 2004, the town created an entire (albeit tiny) department dedicated to making sure elderly residents can live full, fulfilling lives as part of Arnsberg community.

"It is about strengthening resources and capacities, empowering, and enabling elderly people to stay or become active citizens," Martin Polenz, who leads the DFA, told Priti Salian.

Arnsberg is a city of approximately 74,000 residents, around 17,000 of whom are 65 and older.Wikimedia Commons

Polenz also told Channel News Asia that they don't want older residents living in the isolated fringes of the city. "We call it a city of good and long life, and we want to establish that for everybody," he said.

The DFA is tiny but mighty, leading more than 200 projects with a staff of two and a budget equivalent to approximately USD$24,000. They work closely with the Department of Citizens Involvement and the Department of Planning and Building to make sure the needs and desires of the elderly are woven into both the social fabric and physical design of the city.

Here are some examples of what that looks like:

- Numbered benches every 200 meters in some markets and on the promenade along the River Ruhr for rest and for people experiencing dementia. "If someone is lost, they can call for assistance quoting the bench number," Polenz told Salian.

- Volunteers who travel with older people as bus companions on shopping days, allowing seniors to shop for themselves but providing assistance with heavy bags and a sense of security

- Housing complexes that are both affordable and accessible, allowing seniors to live independently for longer

- The Dementia Learning Lab, introduced in 2008 by the DFA, which explores and implements solutions for meeting the needs of people with dementia and their families

- A quarterly magazine, SICHT, printed by the city and run by seniors for seniors

- A senior citizens' advisory council, which new residents are put in touch with

- Intergenerational initiatives, such as Café Zeitlos ("Timeless Cafe"), which aims to provide an inclusive place for people with dementia and their caregivers to hang out with people of all ages and create art together

And that's just a sampling. The DFA serves to advise, direct, train, develop, network, and collaborate to raise funds for programs, and they've been remarkably successful at it.

Channel News Asia did a video feature on how Germany, and Arnsberg in particular, cares for its aging population:

The German Town That's Embracing Dementia | How Germany Gets Ageing Rightwww.youtube.com

The town has earned recognition worldwide for its approach.

"In Germany, most local administrations provide only information and counseling services to help older persons and persons with dementia find points of support in their city," Anne-Sophie Parent, Secretary General of the European Covenant on Demographic Change and 28-year veteran of working on aging population issues, told Silian.

"Arnsberg's co-production approach is innovative because the city involves older persons and persons with dementia as key actors in the solutions that are developed for them. It makes them feel heard, a key element for them to feel valued and included in the life of their city."

Parent also called Arnsberg's work "exemplary and replicable in other European cities with similar demographic profile and population size."

Even if individual programs won't work everywhere, seeing people in their twilight years as active agents in their own lives and communities is an approach all municipalities can take as they prepare for a growing aging population.

From Your Site Articles
Related Articles Around the Web
Wellness

Early-onset Alzheimer's stole the memory of his marriage. Then he proposed again.

Earth and Sun Co/YouTube

Peter and Lisa Marshall's romance began 20 years ago, after the former neighbors had each gotten divorced. They lived in different states and maintained a long-distance relationship for eight years, as neither wanted to uproot her kids. After Lisa's youngest went off to college in 2009, the couple decided to get married.

A dream Turks and Caicos beach wedding followed. Lisa moved to Peter's home in Connecticut, where they enjoyed seven years of marital bliss. Then the warning signs hit.

Peter started giving Lisa directions to their home. He began having trouble finishing sentences, struggling for the words

"Instead of the word 'airplane,' he'd say, 'that thing that goes up in the sky,' " Lisa told The Washington Post. "He also became pretty forgetful, but the word deficiency was really hard to ignore."

Peter went to a neurologist in 2018 and was diagnosed with early-onset Alzheimer's. He was 52.

"Before his diagnosis, I always thought that Alzheimer's was an old person's disease," Lisa told the Post. "Now I know better."

Peter's cognitive impairment accelerated quickly. By January of 2019, he had to quit his job. The following year, Lisa quit hers to become his full-time caretaker.

Needless to say, it's been an incredibly difficult journey for Lisa, and well as the couple's five children, as Peter's memory of his life and loved ones fades—including his memory of being married to Lisa.

But late last year, a beautiful moment of hope broke through the darkness. Lisa and Peter were watching a show that featured a wedding when Peter suddenly looked over at Lisa and said, "Let's do it!"

"Do what?" Lisa asked.

Peter pointed to the wedding scene on the TV.

"Do you want to get married?" Lisa asked.

With a big smile, Peter said yes.

"Well, okay," Lisa responded. "We should get married then."

He wouldn't remember the proposal the next day, but the idea of renewing their wedding vows resonated with Lisa. "For better or for worse" had taken on a whole new meaning after Peter's diagnosis, and his condition has worsened since January of this year. For the past six months, he has seen Lisa as his favorite caretaker, not his wife.

Lisa's daughter, Sarah Brehant, runs a wedding planning business and offered to organize the ceremony. She networked with vendors, who all offered to provide their services for free.

"I knew that my stepdad, who I am very close with, was there through some of the toughest times of my life," Brehant told the Post. "He means so much to me, and my mom is my best friend, so I was proud to be able to take on such an important role."

Sarah wrote in a touching Father's Day post that Peter had started telling her he loved her every chance he got after his diagnosis.

"I knew he wanted to make sure I knew before he couldn't tell me anymore," she wrote. "He'd say it every chance he could get while he still could, every time we saw each other."

Peter and Lisa renewed their wedding vows on April 26 in a ceremony attended by friends and family and officiated by a dementia specialist who helped Lisa set up a care plan for Peter.

"It was just magical — straight out of a fairy tale," Lisa said.

When Lisa got to the altar, Peter leaned in and gave her a kiss.

"There wasn't a dry eye, and I was over the moon," she said. "I hadn't seen Peter that happy in a long time."

"It was absolutely magical," Sarah told The Knot, "and Peter was bright and present the entire day. The sweetest moment of the day was when he had a very lucid moment and he leaned in and whispered in my ear, 'Thank you for staying.'"

Watch this beautiful video of highlights from the big day:

Emotional Vow Renewal // Mill 1 at Open Square // Lisa + Peterwww.youtube.com

As lovely as the vow renewal was, it would be disingenuous to leave the story there. Lisa has been documenting the couple's Alzheimer's journey—the inspiring and the challenging—via her Facebook page Oh Hello Alzheimer's. In her posts, it's clear what an up and down experience it is to love someone who is losing themselves.

On June 14, Lisa shared a bittersweet post about the difficulty of watching Peter disappear, only to be reassured by him when she cried into his chest, "We still have time."

Then, just five days later, Lisa shared a post about how Peter's condition has reached a point where the daycare that gave Lisa a respite from full-time care was no longer viable as he's grown more anxious and agitated. Alzheimer's patients can become increasingly paranoid and hallucinate as the disease progresses, which can lead to anger and aggressive behavior.

"I knew the call would come," Lisa wrote, "I was well aware that it would happen. I just thought I'd have more time."

The decisions about care for a loved one with advancing Alzheimer's are never easy, and time is never guaranteed. Although Lisa and Peter's story is hard to witness, her openness is also providing solidarity and support for countless families who are going through similar experiences with their loved ones.

Lisa has also used her Facebook page to raise money for Alzheimer's research, and after seeing Peter's story, it's obvious why it's so needed. As Lisa reminds us, Alzheimer's is a terminal disease, and as of now, there is no cure. You can donate to the Alzheimer's Association via Lisa's team link here.

As for advice for other couples, "The only thing that matters is love and respect," Lisa told The Knot. "You treat each other with gentle kindness every day and you reach deep into your heart for more patience and understanding than you think you have. You love deeply and immensely and you make memories intentionally. Be present."

Despite Peter forgetting her, Lisa added, "I'm the luckiest woman in the world. The man of my dreams fell in love with me and asked me to marry him twice. He chose me again."

All our best to Lisa and Peter as they navigate their remaining time together.

From Your Site Articles
Related Articles Around the Web
love
Trending Stories