Caring for someone with dementia often goes on for years.
First the person you love has trouble remembering simple words.
Then, she puts her phone in the refrigerator.
Before you turn around, she wanders out the door into the street and can’t find her way home.
It isn’t easy to know what to do, even for nurses and doctors.
Family members usually learn as they go along.
But expert advice can make the lives of caregivers and their loved ones easier.
Attending a free one-day “boot camp” for caregivers, organized by the University of California, Los Angeles (UCLA), made all the difference to Hugo Schmidt.
Schmidt, a retired middle school teacher in Los Angeles, has been caring for his 72-year-old wife, Alice, since 2012.
For some time, Alice has been using a walker. When they were outdoors, Schmidt held her arm.
At the UCLA education program, he learned that she could pull him off balance or he could twist her arm.
Instead, he learned to support her by holding the back of her pants or a belt.
“I asked her if it made her feel secure and she said it was better,” he told Healthline.
A growing need for education
About 9 percent of Americans age 65 and over suffer from dementia, when loss of memory and reasoning abilities interfere with daily life.
They may live as long as 26 years with the condition, needing personal care.
More than 15 million Americans are caring for loved ones with dementia. A third say that this responsibility has hurt their own health.
Like Schmidt, attending one of the many education programs around the country could make their lives easier.
Everyone needs training, observed Dr. Zaldy S. Tan, medical director of UCLA’s Alzheimer’s and Dementia Care Program.
“It doesn’t matter how smart, well educated, or sophisticated you are, even if you’re a physician or nurse,” he told Healthline.
Coping with caregiving
At the UCLA program, 20 to 30 caregivers receive training from 8 a.m. to 5 p.m.
The day includes expert reports on the medical side of dementia.
A physical therapist demonstrates how to use different types of walkers and canes.
Participants can talk with other caregivers, exchanging stories and tips, and learn about ongoing support groups they can join.
They also play out scenes with actors who play the part of the person with dementia.
Each person might have 5 or 10 minutes with an actor. Other caregivers then give feedback.
In the scene, the caregiver might play out how they would prevent the person with dementia from leaving the house.
Another scene might be about encouraging someone to take medicine. The caregiver might choose from sample food that would be best for someone with a swallowing problem.
So far, 84 percent of the participants have rated the program “excellent.”
They also report in a survey by UCLA that their sense of knowing what to do six months after their sessions remained higher than it had been before the training.
Tan told Healthline that caregivers may not want to be told what to do.
They may take pride in their ways and not want to change.
“They need to be prepared for the long haul,” he said, and the fact their loved one will change over time.
One common mistake is to stick to low-fat or low-calorie diets even though people with dementia tend to stop eating and may lose weight. Tan recommends loosening up the diet so your loved one gets nourishment.
Ruth Drew, director of family and information services for the Alzheimer’s Association, a national nonprofit, encourages caregivers to look for education that allows them to participate with questions, or in support groups.
It’s important to learn to see the world through your loved one’s eyes and play along, she told Healthline.
She gave the example of a husband who rigged a latch at the top of the front door too high for his wife to reach. When she’d try to open it, he’d say, “Are you having trouble with that door? There’s something wrong with it. I have to fix it.”
“Getting into an argument, ordering them around, or treating them like children doesn’t work,” she said.
You also can’t force someone with dementia to learn.
Drew encountered two adult daughters who were troubled when their mother kept asking, “When is Dad coming home?” after he had died. They would explain that he had died, and their mother would cry. They even took her to their father’s gravesite.
But people with dementia have lost the ability to absorb new information, no matter how patient you are. The better move, Drew said, is to say, “Dad’s not coming home tonight. He’ll be back later in the week.”
The UCLA team is looking for funding to support future boot camps. More programs are needed, said Drew.
“There are so many people dealing with Alzheimer’s in their families, my hope is to see more education programs of every sort, with a variety of options,” she said.
The Alzheimer’s Association offers resources like online training, local workshops, DVDs, and books. Its Savvy Caregiver program is a free five-session program.
One caregiver’s growth
Schmidt’s relationship with his wife has changed since he attended the UCLA boot camp two years ago.
For years, he had been teasing Alice, intentionally making her angry. For him it was a way to have fun and he thought she might like the chance to express anger.
“I kind of liked it. You don’t get much attention from someone with dementia,” he said.
He didn’t think it was unkind because, he said, “She wouldn’t remember it a half-hour later.”
But at boot camp, he got the message that he should stop.
Another lesson: Give Alice information slowly. Instead of saying, “We’re going to the bathroom to put on your makeup,” he’ll say, “We’re going to the bathroom … and I’ll tell you everything else when you get there.”
In restaurants, Schmidt now orders for her. At boot camp, he told Healthline, he learned to make her choices simple: two choices at most.
Both he and Alice resisted suggestions that she go to a day care program. The UCLA experts recommended one, and she now goes every Thursday from 10 a.m. to 3:30 p.m. Schmidt gets a day off and has noticed that Alice is “sharper” for days afterward.
“There’s a lot you have to know,” he said. “You learn some by trial and error, but it’s far more effective to go to boot camp to have experts and other people with the same problem give you information and leave with practical knowledge and people you can turn to.”
Schmidt’s adult daughter also attended a UCLA boot camp. And he’d like to return for a refresher course to help train his 5-year-old granddaughter on how to respond to Alice.
“The most important thing I learned is that I’m really lucky,” he said.
He and Alice can still talk, after 40 years together.