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By Erika Fredrickson
Missoula Independent 

Where the old folks go

Can community design take the loneliness and angst out of aging?

 

August 23, 2018

Erika Fredrickson

Bill Thomas is a leading voice in the movement to change the way people experience aging. He has focused on three solutions: architecture, culture and technology.

After graduating from Harvard Medical School in 1986, Bill Thomas started working as the medical director of a small nursing home in central New York. It was a run-of-the-mill institution, "depressing and dispiriting," he says. He was attending to an elderly resident's rash one day when she looked up at him and whispered, "I'm so lonely, doctor." Thomas says he had an epiphany. He realized the residents he was caring for seemed plagued less by medical issues than by boredom, loneliness and helplessness. Thomas met with the nursing home board and suggested that animals and plants be brought in. Lots of them. All at once. And so cats, dogs, birds and plants were carted into the nursing home in a single day. The burst of life that Thomas witnessed that day served as the first step of changing - or "disrupting" - what he has diagnosed as a failed aging system.

What Thomas intuited in the early 1990s is today being affirmed by research. A 2015 study published in Perspectives on Psychological Science by Julianne Holt-Lunstad, a leading researcher at Brigham Young University, indicates that loneliness has serious health risks, including associations with dementia and heart disease, and should be considered a public-health issue. According to the Alzheimer's Association, older people with dementia are more likely to become isolated, and are twice as likely as the general population to experience loneliness, because of the stigma and shame associated with the condition, and because social activities they once enjoyed often become inaccessible to them. Loneliness can multiply their already complicated health risks.

Montana is projected to become one of the oldest states in the nation by 2025, ranking no lower than fifth and as high as third in the nation in the percentage of the state's population over the age of 65. In other words, in seven years, at least one in four Montanans will be 65 or older.

According to the Alzheimer's Association, Montana can expect to see a 42 percent rise in Alzheimer's cases by 2050. That projection, compounded by the rising cost of health care and nursing home services and the aging of Baby Boomers in a mostly rural state with fewer resources than higher-population states has put agencies in a panic about how to house seniors and pay for what the Alzheimer's Association anticipates as a "crisis."

Thomas, now an author and speaker who still lives in New York, and his colleague, Kavan Peterson, a long-term-care reform advocate and Missoula native, say the financial crisis is a symptom of a broken infrastructure of aging in this country, and a distraction from the real problem. If we can fix the system and reframe the culture of aging, they say, we can solve the cost issue and, more important, alleviate the mental health issues tied to isolation and loneliness that plague each generation's approach to the end of life.

"Everybody likes to frame this as the silver tsunami that's going to bankrupt the nation," Peterson says. "And it is a pressing situation. But that's because what we've been doing is segregating people and concentrating them in one place, like a nursing home, to deal with it in what we think is an economy of scale that makes it more efficient. But that just makes it more profitable for providers."

Thomas and Peterson are leading voices in a nationwide movement to improve aging, mental health and well-being through architecture, community-building and technology. Thomas founded the Eden Alternative, a nonprofit aimed at deinstitutionalizing nursing homes and creating positive environments for "elders," and a philosophy that has been incorporated into a handful of skilled-nursing facilities in Missoula. And over the past few years, Thomas and his colleagues have seen proof that the approach works.

Data from Sherbrooke Community Center, an Eden-inspired nursing home in Saskatchewan, Canada, shows that between 2006 and 2011, psychotic and anxiety-induced events declined, decreasing medication intake for those issues by 30 percent in some cases. Along the way, the ideology has gained traction and funding. Thomas created the Green House Project, which has secured millions of dollars through the Robert Wood Johnson Foundation and Capital Impact Partners, a D.C.-based financial nonprofit, to replace U.S. nursing homes with home-like environments that Thomas calls "Green Houses."

"In the early 2000s, I got the idea, hey, let's put together a new approach to architecture," Thomas says. "Instead of a long corridor, how about everybody gets their own room and their own bathroom? Instead of an industrial kitchen, how about there's a kitchen right there in the house. And people make and share food around a big wooden table. What if the architecture actually supported greater well-being?"

In August 2006, a University of Minnesota evaluation compared the residential experience in Green Houses in Tupelo, Mississippi, to that of residents in nursing home environments. Green House residents reported a higher quality of life across the board, including personal dignity and relationships.

Thomas and Peterson also run a website called Changing Aging dedicated to replacing bleak notions about growing old with positive narratives. It has been a difficult task.

"I've been very interested for a long time in the well-being of older people, and how they find happiness and how they lose it, and what the circumstances are around that," Thomas says. "I've tried a bunch of things over my career, and I'm just going to say, I've never actually been as successful as I wish to be. And it's only lately that I've kind of figured out why."

Most recently, Thomas has developed what he calls a "triple alloy" concept. It focuses on architecture (the built environment), culture (our attitudes about ourselves and the experience of aging) and technology (the tools we utilize to realize the lives we want to live).

"To be successful, we actually need to integrate all three," Thomas says. "If you ask me what I've learned in the past 25 years, that's it."

The effort to achieve triple-alloy solutions has not been easy. Green House projects tend to be expensive to start due to land and materials costs. And by themselves, they don't address some of the cultural issues that contribute to the isolation of the elderly.

Thomas and Peterson wanted to find some way to abolish the nursing-home model altogether.

"Green House was initially just an experiment for Bill to prove to the industry that you could actually design something that would meet the regulatory hurdles, but would be a step down from a 100-bed nursing home," Peterson says. "But it still has the limitations of skilled nursing systems, and it still often has that feeling of the place people go to die."

The built environment

In June, Peterson and I took the ferry from Seattle, where he lives, to Whidbey Island to visit Ross Chapin, an innovative architect who has been written up in the New York Times, Wall Street Journal, Sunset magazine and a multitude of architecture magazines and northwestern dailies. Peterson and Chapin have met just once before, but Peterson is interested in how Chapin's designs might help keep older people integrated in communities and out of nursing homes.

Inside Chapin's office are plans for neighborhoods across the country, including one that's being built in Hamilton, an hour south of Missoula.

The neighborhoods are customized to location. Chapin is most famous for his work on pocket neighborhoods, which are small-scale developments designed to foster community, an approach he documented in his award-winning 2011 book, Pocket Neighborhoods: Creating Small-Scale Community in a Large-Scale World. Chapin is especially interested in designing multi-generational, all-abilities neighborhoods that accommodate the needs of older people, including those with dementia, in a way that benefits the whole community. The homes are designed with both privacy and common space in mind, inviting neighborhood conversation and encouraging neighbors to look out for one another. Chapin has designed and built three pocket neighborhoods in Langley, a quaint tiny town on Whidbey Island. His Third Street Cottages feature eight houses on two-thirds of an acre, plus a common house, a central garden and a small playground. The carports are tucked away and inconspicuous. The porches face each other, but maintain semi-privacy with porch railings and greenery.

"So it's not just about building," Chapin says. "It's not just about, OK, we're going to create this wonderful building to support elders or to support families. It's the interstitial spaces between that we engage with, those layers between very private and shared."

Peterson says one reason older people end up in nursing homes, where loneliness and isolation can take hold, is a failure of architecture.

"Ninety-eight percent of homes in America today are not accessible for somebody with any kind of physical disability," he says.

Riverside Crossing, the Chapin-designed neighborhood in Hamilton, is just breaking ground. It's a housing cooperative community for people 55 and older developed by the Ravalli County Council on Aging and spearheaded by the council's executive director, Paul Travitz. It features 51 cottages arranged in pocket neighborhoods and adhering to shared design principles. The neighborhood landscape is designed to accommodate and encourage walking and gathering.

"So when we're putting this together, we're not saying, well this is where the old folks go," Chapin says. "This will be a community that won't look like a retirement community, but in fact will be a multi-generational community, significantly oriented to supporting elders."

Also included in Riverside Crossing are two Green House-inspired multi-unit buildings that will offer supportive services and feature 10 small suites and shared living, kitchen and dining spaces. Chapin admits that such supportive living spaces are still difficult to design.

"My concern with elder suites is that they look like hospital rooms," he says. "The questions that I ask when I design are: Would I want to live there, and why? And if I'm living there, how do I have my dignity, but also have access to care."

Peterson finds his greatest challenge in these same questions.

"Designing a community where somebody can be safe and live even when they have memory issues is a worthwhile challenge," he says. "Our argument is, we don't look at aging as this disaster. We look at it as this opportunity to course-correct for some cultural and community design that was just way out of whack."

Culture change

There's a video on the Changing Aging website in which Missoula resident Larry Kilka discusses how he learned he had dementia. After a battery of tests, his doctor broke the news. "He said it this way," Kilka recalls in the video. "He said, 'I have to tell you that you definitely have [memory] loss. I'd sure hate to be you. Gosh! I'd be freaking out.' This came out of the mouth of a well-known neurologist in this town."

Kilka and his wife, Linda, ended up meeting Kavan Peterson, a Missoula native and co-founder of Changing Aging. They were inspired by his work on changing common and damaging narratives about aging and, especially, dementia. They went to work trying to change the culture surrounding dementia in Missoula, but Larry died of a stroke a year after his diagnosis.

"He was so excited, and so impassioned about changing everything," Peterson says.

Peterson says he's searched nationwide for models of dementia-friendly communities and positive-outlook programs to inform his work in Missoula. He landed in Seattle after hearing it was home to some of the nation's best dementia and aging programs - not just formal networks, but informal groups, too. A network called Dementia Friendly America rates Seattle as a top model, but all you have to do is look at the city-wide plethora of dementia-friendly activities to see how pervasive they are. For instance, there's a grassroots movement called Momentia, which Peterson has become involved with. It aims to help people with memory loss and their loved ones to stay active in their communities. Momentia activities, which have been developed by people with dementia for people with dementia, are published in a calendar and include Alzheimer's cafes, cinema outings, garden walks and painting workshops. In addition, Seattle has fostered elder-friendly communities. The Village, for instance, is a network that includes a volunteer program in which young people help older people with, for instance, computers, and end up forging multi-generational friendships together.

On a mid-June Tuesday afternoon at the Frye Art Museum in Seattle's First Hill neighborhood, a group of people funneled into a gallery where the exhibit Towards Impressionism: Landscape Painting from Corot to Monet was on display. The event felt like any art appreciation class, but it was part of Here:Now, an arts-engagement program for people living with dementia and their caregivers. The Frye also offers a program called Meet Me at the Movies where people with memory loss can watch clips from contemporary and classic films and discuss them. There are art classes and a monthly gathering in the museum's cafe where people with memory loss and their caregivers drink coffee and eat snacks. Marigrace Becker, who coordinates programming at a memory-care unit in the University of Washington Medical Center, shows up with a banjo and plays songs. The whole room sings along to "She'll be Coming Around the Mountain." All of these programs provide in-the-moment experiences. Peterson says such activities signal a change in the way we engage people with memory loss. Caregivers and providers often feel the need to press people with memory loss to recall events, even with seemingly benign questions like, "What did you have for breakfast this morning?" Such questions, Becker says, can be agitating for someone who finds themself continually unable to remember. They lash out. They withdraw. They isolate. They get lonely. These Momentia programs spur caregivers to think of other ways to engage. Instead of "What did you have for breakfast?" they might say, "Hey, look out the window. What do you see right now?"

A study conducted by the Frye Museum and the University of Washington School of Medicine examined the ways in which arts programs like Here:Now normalize the way people with dementia and their caregivers feel within their communities. It found that such programs strengthen participants' self-esteem and sense of belonging and recognition.

Mary Jane Knecht, the Frye Museum's program coordinator, says these activities have developed across Seattle organically, without coordinated direction, but it's easy to see how they could be duplicated in other communities.

Any place with a museum, a community theater, yoga classes or coffee shops could implement a Momentia component.

"It's about working with what you have, not re-creating a whole new system," she says.

Technology

Inside Missoula's Grizzly Peak, a senior-living and retirement community, Kaley Burke is demonstrating something called the Ohmni telepresence robot. The robot is 5-foot-3 with a face like an iPad and the ability to turn in circles, traverse the ground (indoors or out) and nod its head. The Ohmni is currently controlled by Thomas, who often deploys the robot to visit residents at Grizzly Peak. Thomas sits at his home computer in central New York, but his face appears on the screen. It's a concept similar to Skype or FaceTime, but the experience is significantly different, because the robot's mobility makes it feel like Thomas in the room.

"How are you folks doing?" Thomas says, remotely rolling the Ohmni up to a couple of people in the Grizzly Peak dining room. The Ohmni's outings provide an opportunity for residents to ask Thomas questions about their health, but they're also a chance to test out the robot's possibilities.

Burke, her brother Kavan Peterson and Jonas LaRance co-own an in-home care company called Harvest Home Care, whose headquarters are housed inside Grizzly Peak. They've all been testing technologies that can help decrease social isolation for older people. The aim of the Ohmni is for residents' friends and family, who might live far away, to be able to log on and experience virtual visits with residents, virtually sharing meals or going on walks with them. Eventually, Burke says, family members could rent a robot on their end, allowing retirement community residents to virtually visit family and even attend weddings and other family functions.

"We're really hoping we can close the gaps on some of those missing moments in your family's lives who are far away," Burke says to a small group of residents checking out the robot. "Instead of a phone call, you get them here with you."

"It would be a miracle for me," one resident says. "I can't even get my kids on the phone. But I think they might like this."

The robot is one of several technologies being tested through Harvest Home Care. Another is the MAGIC Micro-Visit Button, which is a box that can fit in the palm of a hand featuring a single button linked to WiFi. In most senior-living facilities, residents have to set up regular hours ahead of time if they want personal assistance to go shopping, do laundry or take a walk, and there's usually a minimum reservation of three hours, for which residents have to pay at least $50. The MAGIC button allows residents to get quick assistance for an activity that might require only 15 minutes. They push the button and a signal is sent to nearby "care partners." The resident gets an automated call to confirm the request, and then someone shows up to help them with whatever they need.

"We recognized over the years working in the aging field that a lot of people don't really know what they might need and when they might need it," Burke says. "So we've been playing around with the idea of an on-demand service. It allows you to have more control over when you need something and how much you're going to spend on it. It's kind of like the concept of Uber for caregivers, except you don't have to know how to use an app."

On the surface, the MAGIC button seems like a mere convenience. But mental health and well-being is central to its purpose. "What we're trying to do is provide better access to community," Burke says. "What a person might need is for someone to make their bed, or they might want to go to Out to Lunch at Caras Park. But what they get is human interaction and companionship when they need it."

Despite their interest in these technologies Thomas and Harvest Home Care are cautious about overselling technology as a remedy for mental health issues. Kavan Peterson says the elder-care industry focuses far too often on surveillance, which is meant to keep the elderly safe, but often perpetuates isolation and discourages community.

"A monitoring system is the dystopic solution," Peterson says. "The absolute ideal is that if you're in an emergency situation, there are humans there for you. The solution is not to segregate people. It is not to spend more money on services. The solution is to design better communities where people are valued, what they have to offer is valued, and then, in exchange for that, the community does provide some support and is there to help out."

For that reason, Peterson says, simple technologies are often the most profound.

"The single greatest age-enhancing innovation in human history was invented 700 years ago," Peterson says. "Eyeglasses. No modern invention has done more to extend the ability of older adults to enjoy life and contribute to society and culture. The only modern equivalent would be to eradicate age-related hearing loss, something we're not even close to achieving."

Broadband internet access is another technological lifesaver. In rural communities - in Montana and elsewhere - the extension of broadband internet could help change aging culture for the better by giving elders access to amenities like the Ohmni robot.

Peterson says the problem is that tech companies aren't focused on the mental well-being of older people. At tech conferences nationwide, which Peterson and Thomas often attend, all kinds of gadgets are hailed as the next big idea in elderly assistance. Some are benign but ultimately trivial, like a cane with an embedded FM radio. Others, like tracking devices for people with dementia, come with potentially unsettling privacy implications. The obsession with technology as a tool to change and even stop aging could cause harm to older people who are vulnerable to isolation.

"When we're talking about mental well-being, technology is very dangerous," Peterson says. "And I think that the risk of looking at technology, by itself, in an ageist society, without changing the culture of aging or how elders are connected to community, that risks a pretty horrific dystopian future. That's why the technology has to be looked at in the context of everything else."

The upside of developing simple technologies that benefit an aging population is that they can just as easily be useful to anyone trying to create greater connection with their community.

"Is it possible to create cool technology that is basically usable by everybody?" Thomas asks. "I think if the tech industry accepted the challenge of designing for simplicity, in a way that would serve the interests of older people, the tech would be better for people of all ages. The interests and desires and abilities of older people could actually lead us toward better technology for everybody."

In their quest to promote well-being and positive mental health for older people, Thomas and Peterson are now working on a new endeavor: a residence called Minka, a Japanese term for "house of the people." The compact home is an example of integrated technology and architecture, and features interchangeable parts designed to be user-friendly for everyone, including older people and people with disabilities.

"You can pop out a solid wall and insert a new entry or a wall with windows," Peterson says. "Minka parts, such as a bathroom unit, can be installed inside a home that lacks a ground-floor bathroom, and then uninstalled with minimum remodeling."

It's also much cheaper than the Green House model.

According to Sam Betters, executive director of the Loveland, Colorado, Housing Authority, an early and enthusiastic adopter of the Green House model, its $400 per square foot cost is a big drawback. The Loveland Housing Authority and Thomas and Peterson are working to develop pocket neighborhoods of Minka homes, and exploring the feasibility of building Green House homes using the Minka system.

Erika Fredrickson

Kaley Burke and Bill Thomas showcase the Ohmni telepresence robot, which is being tested as a way to help connect residents at Missoula's Grizzly Peak, a senior-living and retirement community, with loved ones who live far away.

"We think our first Green Houses are great, and we are going to build more," Betters says. "Minka has technology that we hope can dramatically reduce the cost of construction, which means more people get the benefit of the Green House model."

Thomas and Peterson are also partnering with the University of Southern Indiana, for which they've created a demonstration Minka home currently being built on the university's Evansville campus. It will be a model with which students in geriatric and nursing programs can interact. Placing the Minka house on campus addresses the culture change issue as well. For Peterson, it plants a seed in an environment filled with young people, prompting them to think about the future of aging in new ways.

"Facing the stigma of [aging] is without question the hardest part of the work we do," Peterson says. "Ageism is insidious and pervasive, and it makes culture the most challenging part of the triple alloy. Ultimately, our work will not succeed on a large scale if we cannot combat ageism and change the way people think about aging and the value we put on older people."

 

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