A pilot project is studying ways to help caregivers avoid burnout and, in so doing, keep relatives with dementia out of costly care facilities as long as possible.
Wanda Breaux hopes it doesn’t sound mean. But, to be honest, she feels a little joyful after dropping off her mother at the new day-health program in Seattle for adults with dementia.
For the next five hours, Breaux is free from full-time caregiving to do whatever — clean house, run to the post office, take a nap.
But the best part is the silence — “Just not hearing the repetition, the same questions every five minutes. I’m finding it can become really, really draining on a person.”
While Breaux, 59, takes a breather, her mother — the gregarious Mae Frances Wilborn — is at the nonprofit Elderhealth Northwest in South Seattle learning exercises modified for people with dementia and games to jog her memory.
In between, she chats in unfinished phrases with her peers who also are forgetful and confused — “You see my mother had nine children, and I’m the second-oldest.”
The dementia day-health program is one piece of a pilot project that also offers family caregivers mental- and emotional-health counseling, education on the stages of dementia and practical tips to improve their own quality of life.
Dementia Partnerships Project
Adult dementia day-health program: There are still openings in the program, which is free and offered from 9 a.m. to
2 p.m. on Tuesdays and Thursdays at Elderhealth Northwest’s South Seattle Branch at 4712 35th Ave. S. Phone: 206-528-5315
To qualify: A person with dementia must not be receiving other adult day services. The caregiver must be a relative and cannot be receiving formal support services more than 6 hours a week at the time they sign up.
Doug Ricker, Aging and Disability Services, 206-684-0292
Source: Aging and Disability Services, Elderhealth Northwest
Participation is free, and people who meet the criteria can sign up for any of the services.
Funded by the federal Administration on Aging, it’s part of a national push to keep caregivers from burning out and, thus, prevent premature placement of people with dementia in nursing homes and other long-term-care facilities.
Other states are running different dementia demonstration projects, but with the same goals.
If the Washington model — which is being tested in King, Whatcom and Skagit counties — improves the ability of caregivers to do the job, and thus to stick it out, it may be replicated statewide and beyond.
Relatives play big role
It’s in the government’s interest to help people with dementia live at home as long as possible.
By 2050, the number of people with Alzheimer’s in the U.S. is predicted to increase from the current 4.5 million to anywhere between 11.3 million and 16 million.
Already, it’s estimated that half the residents in all types of long-term care have some form of dementia.
“If we don’t find a cure or some significant treatment to slow down the process, the care for dementia patients will exceed the current Medicaid budget,” said Patricia Hunter, program director with the Alzheimer’s Association of Western and Central Washington.
“It would just blow it apart.”
Families already are providing the vast majority of long-term care in this country.
After Breaux retired from teaching at Adams Elementary School in Ballard last year, she took on the new full-time job of caring for her mother. Placing her in an institution was a dreaded last choice — “No. No. No. I think it would just make her go more quickly.”
At the same time, there can be a high price to pay. A growing body of evidence shows that at-home caregivers, especially those watching over someone with dementia, have a higher incidence of illness, depression and — in extreme cases — earlier death from stress and exhaustion.
And when a caregiver finally gives up, it can be from burnout.
Breaux, for example, can’t be out of her 85-year-old mother’s sight for more than a few minutes because her mother gets anxious and calls out for her. So it’s hard to get much done — even a simple load of laundry.
Breaux sleeps on the living-room sofa because her mother wanders at night and she wants to catch her before she heads outside.
Wilborn’s decline has been tough on the entire household. A widow, Breaux also lives with a daughter, a grandson, her sister and her sister’s two grown children.
As a group and as individuals, they’ve prayed over Wilborn’s decline and worked to understand that she is no longer the woman they all knew growing up — a go-getter involved in her church, Girl Scouts and the PTA, a mail handler who worked for the Post Office for 32 years.
“It’s like watching this huge foundation just chip away and crumble into pieces over a long period of time,” Breaux said.
Several agencies are collaborating on Washington’s Dementia Partnerships Project.
The state Department of Social and Health Services is responsible for its overall management.
The University of Washington School of Nursing is evaluating the effectiveness of the day-health services using a questionnaire for caregivers at the start and end of the effort.
Examples of questions include: How much do you know about dementia and community resources that can help?
How do you feel about your ability to continue caring for your relative at home?
How would you rate your mood in the past week?
“The hope is … we will see there was something about this program that enabled caregivers to keep the recipient at home,” said Rebecca Logsdon, a research associate professor.
In King County, caregivers in the project have the opportunity to meet with a mental-health counselor who’s based in the West Seattle office of Evergreen Health Care.
The counselor uses what’s called solution-focused therapy to help them set a goal — such as feeling less stressed or depressed. Often they’re given homework to complete between appointments, such walking five minutes a day to combat stress.
Also in King County, a care consultant from the local Alzheimer’s Association will visit their home to find out what help they need and to provide ideas of what to expect from a person in various stages of dementia. The consultant can also give tips for coping, ranging from how to calm a demented person’s anxiety to keeping him or her from wandering away.
“Just listening to people and hearing their stories is very healing ,” said the care consultant, Jane Tornatore.
So far, it’s been enough for Breaux to just get a few hours to herself on Tuesdays and Thursdays, when her mother participates in the day program. Breaux’ sister, who works full time, takes over on Saturdays.
“Not sweet 16 anymore”
The morning of the day-health program, Breaux cracks open her mother’s door:
“Mama, it’s time to wake up. You’re going to the center today.”
An older voice rises from under the covers: “I am?”
Next thing you know, Wilborn is sitting at the breakfast table in blue flannel PJs, pouring orange juice on her cereal.
“Mother, tell me you didn’t do what I think you did,” Breaux scolds.
“I like it that way,” says her mother happily.
Breaux patiently reminds Wilborn to take her pills and lays out her clothes.
Still independent, her mother gets dressed alone, putting adult diapers on backward. But Breaux figures — why fight it?
Then off they go.
At Elderhealth in South Seattle, Wilborn is coaxed through a series of exercises for an hour and a half. She lifts her legs wrapped with weights on the ankles, marches in place, stretches and walks the halls, first on tip toes and then heels.
“I’m not sweet 16 anymore,” she mildly protests.
Then she’s prompted to exercise her memory in a big room full of folks who aren’t sure what day it is or where they are.
An enthusiastic young staff member walks around like a talk-show host.
“Who likes to drive in the mountains?” “Who’s ever swum in a river?” “Who likes to cook?”
Many raise their hands for the question about cooking. But not Wilborn, who often cooked for the family while her parents worked.
“What about you, Mae Frances?” the therapist prods.
Wilborn blurts out: “I cook, but I don’t like doing it.”
Lunch is chicken-noodle soup and pastrami sandwiches, and then it’s time to go home.
Breaux is out front waiting for her mother. She’s spent the morning having coffee with her retired teacher friends.
“Everybody had a story to tell about their elderly parent,” she says.
Even so, it was refreshing to talk to people on her own level and not have to listen to tales about things that don’t really exist.
After her mom gets in the car, Breaux as usual asks: “How was your day?”
“I didn’t do much,” her mother says.
Marsha King: 206-464-2232 or firstname.lastname@example.org