On a late Wednesday morning, a handful of residents gather in the lobby of Pearl Garden, a memory care unit located inside Missoula's Village Senior Residence. The occupants of Pearl Garden are mostly in the later stages of dementia, like Alzheimer's, and this morning they sip cappuccinos and watch HGTV while an aromatherapy diffuser steams spearmint and lavender into the air. Heidi Whyte, a life enrichment assistant, reminds the eight residents from time to time that they are awaiting a "special surprise guest."
The guest, it turns out, is a huge St. Bernard named Gus. The Pearl Garden residents meet Gus every month for an hour, but they usually don't remember, so each meeting is as exciting to them as the first.
The visit from Gus is just one of many activities Whyte plans for the residents. They take walks in the morning to beat the summer heat and play games in the afternoons. There are times for bingo and Bible study and even Wii bowling.
"It's all about having fun and keeping people active," Whyte says. "We have a structured schedule, but we adjust it and come up with new ideas. It's all about being flexible."
Whyte got her bachelor's in community health from the University of Montana's Health and Human Performance Department, and during that time she studied the physiological benefits of mindfulness and meditation in the Mind-Body Lab. Since joining the Village two years ago, she has been leading meditation classes and employing aromatherapy for the residents. In addition, they just launched a program called "Ages Entwined" where residents spend time at least once a week with little kids from daycare or college students.
"There is so much our elder population has to offer," Whyte says. "They have a lot of inspiration."
When Gus finally arrives, he barks happily, leaning his big head on the laps of every person who will let him. Teddy, one of the residents, asks all kinds of questions: "What does he weigh?" "What's his name?" "How old is he?" And she repeats the questions again every couple of minutes.
"Thank you for bringing him," Teddy says, wrapping her arms around the dog's neck and grinning at his owner, Juli Cusker, who also works at the Village. "I just love him."
Gus inspires the residents to reminisce about the dogs they once had. A former rancher talks about his working dogs, who always knew how to bring the horses back from the pasture. They talk about their childhoods, their children, where they met their spouses. When someone asks Teddy where she grew up, she leans in conspiratorially and says, "I'm still growing up," and everyone laughs.
Turns out, Teddy's line isn't just for laughs. It happens to coincide with one of the key missions at Pearl Garden and a growing number of nursing homes, memory wings and aging programs around the country and, more recently, in Missoula. The goal is to move beyond the historically bad reputation of institutionalized long-term care and foster an environment more conducive to community involvement and, yes, personal growth.
This is no small undertaking, but local administrators are working to change practices and perceptions with a sense of urgency. The current long-term care system has just a few decades to adjust to an unprecedented influx as the baby-boomer generation ages. According to the Census Bureau, about 50 million people in the country are over 65, but by 2050 that number will be somewhere closer to 80 or 90 million. With this increase, the number of Alzheimer's patients is also projected to grow. According to the latest reports from the Alzheimer's Association, 5.3 million people are currently living with the disease. By 2050, there will be 16 million.
Montana is one of 19 states that will see the biggest percentage changes, with a projected 42 percent rise of Alzheimer's cases. According to experts in the field, current resources—whether at long-term care facilities like Village Senior Residence or for in-home care—are inadequate. The costs to improve the system—for taxpayers, as well as people aging into long-term care—are daunting and, in many cases, prohibitive.
As professionals in the aging field work to address the immediate issues, many other health care workers, gerontologists and activists see these challenges as an opportunity to create a new model—one that embraces aging in a much more radical way.
Independence from ageism
On Fourth of July eve, Kavan Peterson, editor of the blog Changing Aging, posted a "declaration of independence from ageism." He wrote, "Like the colonial British Empire, ageism won't roll over without a fight. We will have to mobilize, recruit allies and fight tyranny with every weapon at our disposal."
Peterson is a 37-year-old Missoula native, former journalist and longtime social justice advocate who has thrown himself fully into a growing national movement focused on changing society's approach to aging. He treats the subject with the kind of bombast—and humor—one would expect from an environmentalist or foodie activist.
The Changing Aging blog was co-founded by Peterson and William Thomas, a doctor of geriatric medicine and international expert on elderhood. The site highlights progressive pro-aging projects around the world and offers blunt criticisms of nursing homes. It dissects misconceptions about dementia and proposes alternative approaches to aging issues with pieces like "Elders as Secret Activists."
The culture change movement in aging has been around for decades, but it is just starting to gain momentum in places like Missoula. It's a next step in a long evolution, one that starts with a dark history of poorhouses and asylums and led to the birth of the nursing home. That institutional model, which is based on the hospital- and military-style efficiency of packing people into one place, continued to be the norm for decades.
"Nobody says they want to die in an institution," Peterson says. "But we have done absolutely nothing to help people achieve that goal and in fact we have created a society that makes it extremely difficult to do that."
Peterson has long been passionate about social justice issues. He grew up in Missoula, graduated from Hellgate High School and earned his journalism degree at the University of Massachusetts-Amherst. He started working for Stateline.org in Washington, D.C., in the early 2000s and he covered a wide range of policy issues, but most notably he gained a reputation for being an expert reporter on gay marriage. In 2004, he wrote a 50-state rundown on the issue for the Pew Charitable Trusts and contributed to coverage for National Public Radio.
"I thought journalism was one of the most important professions in any society and it would help improve the world," he says. "I always cared deeply about equality and, as a reporter, whenever I saw public policy issues in government or large institutions, if there were severe inequalities I was passionate about it." After covering education reform, immigration policy and the death penalty, Peterson started to feel a pull toward advocacy work.
"I didn't feel like I was that objective anymore," he says. "I felt like I was an activist."
Peterson was hired to do PR for the University of Maryland-Baltimore, which included work for a new program called the Erickson School on Aging. The long-term care system wasn't entirely new to him. In fact, his mother, Kathy Hammond, is the executive director at Village Health Care Center in Missoula, and all three of his sisters have worked there.
"I had reported on aging issues before," Peterson says, "specifically on how they impacted the states. And like most reporters I had looked at it exclusively as a negative issue—as a crisis issue. I wrote stories about how retirement of the baby boomers is going to be a brain drain on state governments, and that as baby boomers age they are going to bankrupt the country and it's going to be a huge burden on our social safety nets and our long-term care system. That's how media frames stories about aging, and that had been my experience."
That is until he met leaders in aging like Thomas who champion radically different views on the issue.
"They look at how we are going to plan for the aging of the baby boomers as a social justice issue, as an equality and civil rights issue," Peterson says. "It's more about the way society thinks about older people than it is about budgets and welfare and social security. And this thrilled me."
Thomas is best known for two major contributions to the culture change revolution. He created the Eden Alternative, a set of education programs aimed at deinstitutionalizing long-term care—not just in care centers, but also in regard to in-home care. It turns the perception of old people from being sad, helpless victims into elders who still have something to offer their communities. Thomas believes post-adult life is simply another stage of personal development or, as Teddy put it at Pearl Garden, where people can continue to grow up.
Thomas also created the idea of Green Houses. Nursing homes were mostly built in the 1950 and 1960s, and by the early 2000s they were up for repair. "Dr. Thomas recognized, 'Why on earth would we start investing all this money in baby boomers to recreate a system that is deeply flawed and based on practices that are almost 50 years old?'" Peterson says.
With funding from the Robert Woods Johnson Foundation, Thomas created a model that was designed to work within the very complex regulatory system that nursing homes operate under. With Green Houses, everyone gets a small private home with their own things and their own personal certified nursing assistants who cook and eat with them.
"The idea is that you should have autonomy, your well-being should be addressed, you should not be governed by administrators and medical staff in terms of how your daily routines are led," Peterson says. "The daily routines are built around the hearth, enjoying good food, spontaneous activity—not structured with, 'It's time for bingo, or we're going to watch a movie at 5.'"
The Green House model doesn't come cheaply. Peterson says he gets emails every day from people wanting to know how to do it and he always has to break it to them that the cost is millions of dollars. But Green Houses are being built across the nation (St. John's Ministries in Billings built one in 2007) and the Robert Woods Johnson Foundation has invested $15 million in the past 13 years to make the Green House model its major long-term care initiative. As of February 2015, there are 174 open Green Houses on 40 campuses in 27 states with another 186 in development.
While Green Houses gain some momentum, Peterson says there's still a long way to go. The majority of long-term care remains entrenched in the old system.
"Green Houses are actually now the leading model, so developers now claim that they are doing Green Houses—or small-house living—but the industry is still really focused on the architecture or the design," he says. "They don't necessarily fully grasp the living aspect of the culture change."
A lost connection
The question of how we want to live our lives is at the center of popular and academic discussion. But the question of how we want to live after a certain age—say, past the age of 70tends to be avoided. In fact, there's only one aspect of the conversation outwardly acknowledged: Almost everyone says they do not want to end up in a nursing home.
A 2013 poll from the AP-NORC Center for Public Affairs Research showed only 25 percent of people over 40 thought they would very likely need long-term care. Studies show 70 percent actually end up needing it. Sixty-five percent who responded to the poll had done little to no planning for their aging needs. About a third said they'd rather not think about it.
"I think it has to do with what ending up in a nursing home says about us needing that level of care," says Linda Torma, a clinical specialist in gerontological nursing at UM. "There's a stigma to that. And a lot of people think, 'If I go to the nursing home it means I've been abandoned by my family.'"
Torma began working in the aging field in the early 1990s, when she was in her 40s. "I started working in it because I wanted it better for me," she says. "That was my main motivation."
Torma considers herself a longtime fan of Thomas. His book, What Are Old People For: How Elders Will Save the World, sits on her desk inside UM's Corbin Hall. She says she recognizes a lot of the systematic problems Thomas talks about in his work.
When long-term care became regulated in the late 1990s, it also became overly cautious. For a long time, the rules in institutions have been that the staff needs to be able to hear and see you at all times. Residents often are forbidden to lock the doors to their own rooms. Outings have been rare because of the fear that someone could fall and break something—then sue.
"They really try making it a home-like atmosphere," Torma says, "but safety trumps everything. People are so worried about keeping you safe that life starts feeling constricted."
Hand-in-hand with that issue is the fact that the world outside the nursing home isn't age friendly. Neighborhoods without sidewalks, benches and lighting are especially unwelcoming to elders. Even homes are typically built only for the perfectly abled.
One cutting-edge concept taught in universities—including at UM—is "universal design." The idea is that you build your community with everyone in mind. Torma says she and her husband have even started adapting their University District home to fit their aging needs. They widened the doorways for walkers and wheelchairs. They took the lip out of their shower so there's no need to step over it to get in. The design is now accessible to anyone of any age, she says, whether you're a toddler, an adult with a broken leg or an older person. That kind of access isn't just a comfort factor, it's vital for allowing people to stay in their homes for longer.
"That's what people need," Torma says. "People gravitate toward institutions because they are not safe in their neighborhoods or homes. And when they do that, they lose that connection to the community."
Torma adds that losing connection to community is a major factor in accelerating a person's declining health and leads to a shorter lifespan.
Unlike Thomas, Torma believes we do need nursing homes. It's just that the nursing home model itself needs a major update.
"The people who are working in aging are doing the best they can," she says. "I don't want to criticize that. But I sure hope for something better."
To that end, she teaches a class at UM where she asks her students to design a nursing home—but one they would be happy to live in.
"The most creative one gave me goosebumps," Torma says. "They said they would build it right on the Oval on campus. It's not on the edge of town, it's in the middle of town. They'd put a bowling alley in it where college students could come in and engage with the older adults. They might put in a bar—create a place where the whole community would pass through."
A sense of purpose
The Netherlands is one of the most prominent world leaders when it comes to reform in long-term care. In April, PBS reported that a Dutch nursing home has started offering college students rent-free housing at the facility in exchange for 30 hours per month of their time. The students spend that time watching televised sports events, celebrating birthdays with the residents and, in general, providing them a connection to the world outside of the facility. There are also Dutch homes that include daycare centers so residents can be around children. The Care Farm program allows people living with dementia and Alzheimer's to spend their time on farms. There are 1,500 participating farms, making it the largest source of day programs in the country.
Netherlands native Maarten Fischer, who helped develop and expand his country's Care Farm program, moved to the Flathead Valley with his Montana-born wife and their children in 2012. Not long after he moved, Fischer spearheaded a similar program with Flathead farmers.
"The Netherlands has a history of this from the late 1990s," Fischer says. "It was a way for farmers to share what they feel are the riches of life on the farm. And it was very quickly noticed that it was getting [participants] to be physically active, helping them socialize with people outside of their immediate circles and it was giving them a sense of purpose and belonging. They got to give. And in the health care system they don't get to give—all they do is receive care from others."
The Care Farm program in the Flathead is run through A-Plus Healthcare, a statewide home care company where Fischer works as a day activity program manager. A-Plus sets up days at participating farms for a variety of clients—not just for elders but also for people of all ages living with autism or disabilities. The diversity of clients is a large part of the program's overall philosophy.
"When we serve seniors, we try to match them up with younger people with disabilities," Fischer says. "It puts them in a situation where they are helping younger adults and the younger adults are in a position where they can help the seniors."
One of the reasons the Netherlands has been able to create these kinds of model programs is that, over the years, the country has changed its funding policies. Instead of financing care based on institutional and medical needs, the funding is provided based on what individuals decide they need to live better.
In the U.S., Medicaid reimburses for specific services, usually not related to a larger ideal of holistic well-being. But Fischer says Medicaid was able to fit the Care Farm program under the category of respite. The farmers are trained as caregivers, so families can drop their loved ones off into their care. There are currently 10 farms that serve 50 clients per week. Fischer emphasizes this isn't a ploy to get cheap labor. While A-Plus pays the farmers for hosting the clients, the work the clients do doesn't increase production. It actually slows it down.
"What one of my farmers gets done in five hours with five clients is something he would otherwise have done himself in half an hour," Fischer says.
The payoff comes in the relationships that are built and the emotional well-being that is created.
"When people come back home from the farm they are happy, fulfilled and full of stories," Fischer says. "And their loved one—who needed the break—doesn't feel guilty about needing that break because the client also had a great day."
Some people with dementia get anxious without their partner around, so Fischer has also started a new program. People with dementia and their families can go on guided nature walks and historic tours.
"The idea with the tours and the farm program is that people feel normal," Fischer says. "If you see how dementia claims the brain, one of the last areas to be affected is the emotional [part], so if you go outside, generally, people will get endorphins from exercising and outside air, and that happy feeling will spill over up to four or five days after they go. We've had clients that have maybe a three-minute memory span. A day or two after they went to the farm they would say to someone, 'Hey, I don't know what I did today, but I sure liked it.'"
Back to life
In 2010, a YouTube video of a man in a nursing home started circulating on the Internet. The man, Henry, who is living with dementia, is shown slumped over in a wheelchair, eyes closed, barely engaged, when a staff worker approaches with a set of headphones attached to an iPod and puts them over Henry's ears. Then something incredible happens: Henry's legs start shaking and his arms start wiggling and his eyes grow big. A smile appears on his face and he begins to sing along to the 1940s big band music. Even after the headphones come off, he seems to be able to recall memories better. He appears to have literally come back to life.
The clip eventually became part of a Kickstarter campaign for the 2013 documentary Alive Inside. The film, directed by Michael Rossato-Bennett, won an audience award at Sundance and also showed in Missoula at the 2013 Big Sky Documentary Film Festival. Alive Inside follows social worker Dan Cohen, founder of the nonprofit organization Music and Memory, as he brings headphones into nursing homes and creates personal playlists for clients. His hope is to demonstrate music's ability to combat memory loss and restore a sense of self to those lost in the fog of dementia. It includes interviews with best-selling author Oliver Sacks, musician Bobby McFerrin and, of course, Dr. Bill Thomas.
Jackie Johnson, a Missoula-based registered nurse, was inspired to contribute to the Kickstarter campaign after seeing the Henry clip. Even more, she decided to spearhead a project to bring the Alive Inside idea to facilities in Missoula. She sent out several letters to places around the community to introduce them to the idea and for a long time, she didn't hear back from anyone.
"For a lot of people, it's a lot to take on one more thing," she admits.
Finally, she heard from the staff at Edgewood Vista, a senior living center. Shawn Bennett, a life enhancement coordinator, had seen the movie and immediately took action. He started repurposing cellphones and using a couple of iPods to create playlists for residents.
Three weeks ago, Johnson and volunteer Susan Stubblefield went down to Edgewood to see how it was working.
"One woman allowed Shawn to put the headphones on," Stubblefield says. "Before that, she had seemed anxious and not interacting with people. The music started and all of a sudden this impish grin came on her face and she looked everyone in the eye and took off. She was dancing around the facility."
The second resident they witnessed also seemed to change her demeanor. She'd been a former jazz club owner, and even though she couldn't remember things from moment to moment, the jazz coming out of her earphones seemed to bring back memories for her.
"Shawn brought her some rhythm instruments and she was playing and talking to us and really animated," Stubblefield says. "She was much more connected."
For people with dementia, music, just like the Care Farm Program, has a physiological effect on the brain, tapping into an emotional area that is still very much alive despite other parts of it dying. Al Power, a doctor interviewed in Alive Inside, talks about how these alternative approaches can sometimes lead to those with dementia not needing certain medications anymore.
Currently the Medicaid system doesn't easily support alternative practices like music therapy. It will provide compensation for extremely expensive drugs, but if a facility wants $200 iPods, there's no funding. Medicaid is almost purely linked to mainstream medical procedures and products, which feeds into the medicalization of aging.
Johnson facilitates two dementia support groups in town, mostly filled with caregiver spouses of people with the disease. The frustrations she hears from her groups—Is my wife overmedicated? My husband has stopped engaging, what can I do?seem to scream for some kind of action. Now retired, Johnson is drumming up volunteers to help make it easy on long-term care centers and caregivers by providing donated phones, iPods and headphones, and creating playlists.
"I like so much of what is in the film," Johnson says. "One thing stands out that Dan Cohen says: 'If you knew a way you could help a million people wouldn't you jump at the chance?'"
In his early days, after graduating from Harvard Medical School, Bill Thomas worked as the medical director at a small nursing home in New York. He was tending to a resident's rash one day when she reached up to him and whispered, "I am so lonely, Doctor." It occurred to him that so many of the ailments he was seeing in his patients weren't really medical, they were due to boredom, loneliness and helplessness. And so one of his first steps to conquer those "plagues," as he calls them, was to move in a menagerie of dogs, cats and birds, plus an abundance of plants, all on the same day. The chaotic disruption of filling the nursing home with life all at once is where he got the idea for the Eden Alternative.
"I was taught as a doctor that a nursing home was like a hospital except that the people weren't expected to be cured," Thomas says. "If you just think about it, you realize, 'Hey, people here deserve to be as happy as anybody anywhere.' I started asking the question of what would make people happy. And people love being surrounded by life. It's a very strong impulse and yet most nursing homes in America have almost no life in them. I got to thinking that the best metaphor wasn't a hospital but a garden. And what I really wanted to do was make a garden that would grow people."
Thomas is currently traveling throughout the U.S. on his "Age of Disruption Tour," which is a nonfiction performance piece where he talks about the vision he has for aging.
"We have a society that equates youth with perfection and aging with decline, as if we touch the pinnacle of human existence in our mid-20s and it's all downhill from there," he says. "We see every older person as diminished. They are demented. Everything you see around you is negative. But that's actually a terrible way to measure people. I want to live in a society where every age is best ... where those crazy, horrible birthday cards that mock older people—they just go out of business. Our job is to make it so every person at every age gets to be themselves and rise to their full potential."
Kavan Peterson, the editor for Changing Aging, has continued to support Thomas' work, but recently he decided to start his own project. He combined forces with his sister, Kaley Peterson-Burke, and their friend, Missoula native Jonas LaRance, to start an in-home care company in Missoula called Harvest Home Care. Though many home care companies and care facilities have been trained in Thomas' Eden Alternative, Harvest Home Care will be the first in-home care company in the country to be created around the philosophy. It's a for-profit benefit corporation, which Peterson sees as a demonstration model and a chance to experiment with Thomas' more radical ideas as well as partner with Missoula organizations. "We got together in the fall, sat down and then took our plan to our mom and ran it by her," he says. "She knows the community and she thought it was an amazing idea."
In early May, Peterson and LaRance flew in from Seattle to facilitate a talk at UM by Al Power, the other doctor from Alive Inside. His goal has been to eliminate the use of antipsychotics in the treatment of people with dementia. Power believes that while care workers almost always have clients' best interests at heart, the system—with its staff turnover and rigid schedules—often makes those clients feel helpless and angry, and they lash out. And then they get medicated.
"What I have devoted my career to lately is just going around giving seminars and giving people tools for how you can respond to this person differently so they don't need to be distressed and they don't need a pill," Power says. "I'm really trying to empower the nurses aids, the family members and social workers to have those skills."
Besides incorporating Power's ideas, Harvest Home Care is trying to find other ways to chip away at the culture of ageism and the fear of dementia. Peterson-Burke recently hosted Missoula's first Alzheimer's Cafe, a program where people living with dementia and their caregivers can show up to a coffee shop and casually spend time in the community. It's a way to demystify Alzheimer's and bring it into the open, and it gives clients a different opportunity beyond structured activities and support groups.
On Wed., July 22, the company will be sponsoring a screening of The Age of Love, a documentary about senior speed dating. The hope is that the public can come to see elders as people just like them—and realize that their own induction into elderhood need not be so grim.
"Aging is this incredible leveler," Peterson says. "Unless you're struck down young, everybody is going to grow old. And everybody's going to experience the marginalization of being older. Or, hopefully, they'll be able to experience the rich new way they can contribute to community. It's up to all of us to decide."
This article was updated Thu., July 16, to reflect the correct name of the Village Senior Residence and the correct number of Alzheimer's cases in 2050.