Senior centers lag behind Alzheimer's rising tide
But Lake Oswego's Adult Community Center is quickly becoming a model for support services
Art Martin saw his wife, Sue, through her dementia diagnosis and treatment. Now when he talks to others about her, its rare, he says, when he doesnt hear a story of a relative, a parent or a spouse that echoes his own: Martin was completely unprepared for his new responsibilities.
Id read a little bit and knew there were some potential issues, says Martin, who lives in Lake Oswego. But basically, I was ignorant.
The story of Art and Sue Martin matters because Oregonians increasingly will have to pay to care for an aging population in a state where Alzheimers and dementia are on a sharp uptick. Right now in Oregon, nearly 60,000 adults suffer from Alzheimers. By 2025, that number is expected to jump to 84,000 almost 2 percent of the population.
Yet senior centers, an important provider of services to older adults and a local link to state and federal safety-net programs, are frequently unprepared to serve people with Alzheimers and the family members who care for them.
How unprepared? One recent study by a scientist at Washington University in St. Louis found that senior-center workers know less, on average, about Alzheimers than the typical university student. And that lack of knowledge worries some of their bosses.
I think that we need to develop some additional skills and capacity on the part of our staff, says Susan Getman, chair of the National Institute of Senior Centers, an arm of the National Council on Aging. Getman also serves as executive director of a senior center in Wilmington, Del.
The training Getman advocates costs money, of course. And it could mean a change in how senior centers identify themselves in the community, a Portland State University researcher is learning. But some senior centers, including the Lake Oswego Adult Community Center, are already trying to bridge the gap.
Lake Oswegos respite program, where someone caring for a family member with Alzheimers can drop off their charge for four hours of art, music and other activities, is now offered twice a week in response to a long and growing waiting list. The center also hosts two caregiver support groups in partnership with the Oregon chapter of the Alzheimers Association that draw three times as many participants as they did when they were started 14 years ago.
One of those caregiver support groups, for people caring for relatives with Alzheimers or other dementia-related illnesses, meets the third Tuesday of each month at 1:30 p.m.; the other, for family caregivers, meets the fourth Wednesday of the month at 6:30 p.m.
On the leading edge
In some ways, Oregon has a head start with Alzheimers care. Nearly 20 years ago, it became the first state in the U.S. to set aside money for a statewide respite program. Today, Clackamas is one of several counties in Oregon which offer $500 a year to fund respite services for family caregivers.
These programs offer caregivers like Martin a break from what is often a full-time job requiring constant attention to a loved one who is slowly fading away.
You get to the point where you kind of hate to leave them alone, Martin says.
But having a break, even if its for just four or eight hours a week, is crucial for caregivers own well-being, according to Berta Derman, the ACCs human services supervisor.
These caregivers are unpaid. Theyre the backbone really of our long-term care in this country and here in Oregon. And they need help doing this, Derman says. But they need to be careful of their own health, too, and they are entitled to have their own life and be healthy. Thats what were trying to help them attain that balance where you can have some friendships continue, and relax a little bit and enjoy something.
Still, the Lake Oswego ACC provides one of only 17 respite programs for Alzheimers caregivers statewide, Derman says, and thats thanks in part to a grant from the Brookdale Foundation.
Derman describes it as a two-fold program to provide time away from caregiving roles to enjoy perhaps lunch with a friend, a round of golf, going home and going to sleep, doing some shopping. At the same time, (caregivers) feel comfortable that their loved one is having a good time in a program designed especially for them.
The respite program, which began in 1993, now offers four-hour sessions on Tuesdays and Thursdays, from 11:30 a.m. to 3:30 p.m. During that time, there is one staff member or volunteer for every three attendees, assisting with activities that are led by music, art and horticultural therapists.
There is a fee of $30 for each four-hour session, and groups top out at 12 participants. Scholarships are available.
Were always looking for new participants, Derman says.
Demand for such programs is growing, according to Dana Tassos, who oversees client services at the Lake Oswego ACC. The programs are popular, needless to say, because they work.
Alzheimers can be debilitating. As the brain atrophies, it can cause people to no longer be able to do complex day-to-day tasks like driving. Memory loss is also common. The strain on caregivers is constant but research shows that those who get time off report being in better health, physically and emotionally.
After their four-hour break every week, Tassos says, caregivers would come back and I would see the relief in their faces.
Respite programs reduce costs for both families and public coffers. They are more affordable than in-home care, and access to respite programs can allow caregivers to delay moving their loved one into an assisted living center, which draws money from Medicare or state budgets.
Yet programs like this one only serve a small number of the roughly 173,000 unpaid caregivers the Alzheimers Association estimates there are in Oregon.
Looking to the future
How to do more? Thats a regular topic of conversation among directors of senior centers, says Getman of the national senior centers directors group.
For starters, centers need trained staff, she says. Many centers arent equipped or staffed to serve people who cannot always take care of themselves. She worries, for example, about what would happen if someone were to wander away and get hurt or get lost. But training requires money. And money requires advocacy.
Senior centers need to be doing some things on their own to recognize the need and respond to it, but also to be advocates at the local, state and national level to make people more aware of whats going on and come up with community-based solutions for those problems, Getman says.
Oregon is making some progress on that account. After several years of cuts to social services for older adults, a one-time investment of $3.3 million from the states general fund was allocated this year to train long-term-care workers and develop more resources for caregivers. An additional $1.25 million was approved at the same time for local Area Agencies on Aging to support evidence-based projects promoting wellness in older adults.
Again, Lake Oswegos ACC is playing a leading role. It is one of the first centers in the Northwest to establish a local chapter of the Stress-Busting Program for Family Caregivers; this week, two volunteers from the ACC will attend training in San Antonio, Texas, and then lead nine-week sessions beginning in January.
Its designed specifically for caregivers of people affected by Alzheimers or related dementia, Derman says. Its to help them manage their stress and cope better with their lives. It takes a holistic approach, dealing with the emotional, physical and cognitive needs of caregivers.
Each session will be scheduled to coincide with the respite program already offered at the ACC.
But being on the front lines of public health like this is new for most senior centers, says Melissa Cannon, a researcher at Portland State University who is studying these changes in the Portland area. These centers have long been social gathering places for older adults, she says. Now some are adding wellness programs, and more staff members must receive specialized training in aging.
Thats whats really different from what senior centers used to be, Cannon says.
More needs to be done, she says. Most people want to stay where they are as they grow older. Yet getting to and from senior centers can be hard, especially in rural areas, and there is a lot of work to do to educate people about existing programs.
Experts raise concerns, too, about equitable access to care, particularly among high-risk groups. Older African-Americans are about twice as likely to have Alzheimers or dementia as older Caucasian adults, and Hispanics are about 1½ times as likely. Health conditions such as high blood pressure and diabetes, which are more prevalent among African-Americans and Hispanic people, may increase the risk of Alzheimers, as do lower levels of education and other socioeconomic characteristics.
People who work at senior centers say its hard to be everything for everyone, according to Cannon. Theres so much demand on them to expand their services and activities.
Art Martins wife, Sue, entered full-time care four years ago. That was five years after he went to his first caregiver support group at the Lake Oswego ACC. He devotedly makes the six-mile trip to visit her at lunch every day, although shes no longer able to feed herself.
Now there are new faces at Martins support group. More participants are younger, confronted with a loved ones diagnosis of early-onset Alzheimers. They are looking for a safety net, and its hard to downplay how critical these services will become in the coming years as the number of people with Alzheimers continues to grow.
Over nearly a decade, Martins support group has become a second family and he still attends. What keeps Martin coming back?
Thats a good question, and I dont know that I can give you a good, solid answer, he says. Part of it is habit. Part of it is you get to know some of the people.
But sometimes you can offer something.
Jason Alcorn wrote this story for InvestigateWest, an independent, public interest newsroom for the Pacific Northwest. Learn more at www.invw.org. Saundra Sorenson, a staff writer for The Review, contributed to this report; she can be reached at 503-636-1281 ext. 107 or email@example.com.Add a comment