As baby boomers stress an already challenged long-term care system, a collection of Missoula caregivers and advocates look for new and radical ways to change how we think of older people. Missoula Independent reporter Erika Fredrickson profiles on of those advocates, Harvest Home Care President Kavan Peterson:
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.”
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 Dr. Al Power, an internationally recognized expert dementia care. 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.”