Workshops Help Families Grappling With Alzheimer's Home Care
There are more than 5 million people with Alzheimer's in the U.S., and most are cared for at home. Now, one company has begun offering training to family caregivers to help them deal with the special challenges of caring for an Alzheimer's patient.
The company, Home Instead Senior Care, is the nation's largest provider of nonmedical home care for seniors. The workshops are free and available to anyone, whether they're clients of the company or not.
A recent session in Los Angeles drew about half a dozen people on a weekday afternoon. The need that brought them there was as serious as it was undefined. Tina Stephenson put it this way: "I need help, bottom line."
She's been with her partner, Gino, for 34 years. They live in a one-room apartment, and she says that certain ordinary things, like standing in front of the sink, just freak him out. "I mean, it's so weird. He just all of a sudden resists me and pulls the other way. So I'm looking for some help with that," Stephenson says.
Leading the workshop is John Moser, the owner of the Home Instead franchise in Los Angeles. He got into the home care business after years working as an elder abuse attorney.
"I dealt with a lot of nursing homes and skilled nursing facilities," he says. "I always thought, is this really the only option for seniors?"
That led him to Home Instead. The company's employees help older adults with things like meals, grooming and transportation. "Family members would be so surprised that our caregivers were able to get mom or dad to do certain things" that family members couldn't, says Moser. "They would call the Home Instead offices and wanted to know more about this training."
The training was developed by Home Instead, but it's based on ideas accepted by many Alzheimer's experts — for example, making use of long-term memories and recognizing what triggers anxiety. The company has spent about $3 million over the past three years on developing and presenting workshops for family caregivers. Home Instead says it wants to be a community resource for families grappling with Alzheimer's. It's also a way to get more clients.
When it comes to caring for Alzheimer's patients, Moser tells the group that knowledge is power. "I always tell caregivers: Know 100 things about the person you're providing care to," says Moser. Those things are then recorded in a workbook called "Capturing Life's Journey."
"Even though short-term memory goes, a lot of people with dementia retain those long-term memories," he says.
And those long-term memories — and lifelong activities — can be rekindled and used to distract a person with Alzheimer's from behaviors that could cause them physical or emotional harm. Or the information can be used to give them a better quality of life.
For example, Moser talks about an artist who just stopped painting when the disease took hold of him.
"So we ended up getting some canvasses for the caregiver and she just started painting," he says. This went on for a few days. Then the Alzheimer's patient began to sit next to her as she painted. And a few days after that, says Moser, "he's grabbing the paint brush out of her hand, and now he's got a wall of paintings that he's painted since he got this disease."
Arguing, reasoning or just saying no generally doesn't work. One workshop participant was learning that the hard way. Anton Vogt has been caring for his friend, Erica.
"If I put some money somewhere, she moves it around," Vogt complained. "She can't find it, then she thinks somebody stole it."
Moser says it's OK for caregivers to use deception, especially if the person they're caring for has lost their short-term memory. It worked with another client of his who also liked to have money around.
"She had access to money, so she sometimes would have hundreds and hundreds of dollars on her," Moser says. She would lose it and accuse her caregivers of stealing. "So we ended up giving her a bunch of singles, then eventually Monopoly money when she really couldn't tell the difference."
But telling her she couldn't have money? That would've only upset her. You'll never be able to drag a person with Alzheimer's into the same world that you live in, Moser says, "because it's really all about them, and providing them the comfort and security of whatever they perceive as their current reality. You [should] be present in their reality."
That's a reality where many caregivers may find themselves in years to come. With the population aging, cases of Alzheimer's in the United States are expected to double by the year 2050.
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Transcript
AUDIE CORNISH, HOST:
We're going to hear now about the challenges of caring for a loved one with Alzheimer's. Nationwide, more than five million people struggle with the disease and most are cared for at home. The nation's largest provider of non-medical home care for seniors is now offering family caregivers training in dealing with Alzheimer's. Home Instead, as the company is called, makes the workshops available to anyone, for free, whether they're clients are not.
NPR's Ina Jaffe attended a workshop in Los Angeles.
INA JAFFE, BYLINE: It's the middle of the day in the middle of the week and half a dozen people are gathered in a nondescript meeting room. The need that brought them here can be as serious as it is undefined. Tina Stephenson says she's here.
TINA STEPHENSON: 'Cause I need help.
(LAUGHTER)
STEPHENSON: Bottom-line.
JAFFE: She's been with her partner Gino for 34 years. They live in a one-room apartment. And she says that certain ordinary things, like standing in front of the sink, just freak him out.
STEPHENSON: I mean, it's so weird. He just all of a sudden resists me and pulls the other way. So I'm looking for some help with that.
JOHN MOSER: Alright, let's get started. Everyone get some food and something to drink.
JAFFE: That's John Moser. He owns the Home Instead franchise in L.A., and he's leading the workshop. He got into the home care business after spending years as an elder abuse lawyer.
MOSER: I dealt with a lot of nursing homes and skilled nursing facilities. And I always thought at that time that: Is this really what is the only option for seniors?
JAFFE: Which led him to Home Instead. He explained that its employees help older adults with meals, grooming, transportation.
MOSER: And family members would be so surprised that our caregivers were able to get mom or dad to do certain things. So they would call the Home Instead offices and want to know more about this training.
JAFFE: The training was developed by Home Instead but it's based on ideas accepted by many Alzheimer's experts, like using long term memories and recognizing what triggers anxiety. The company spent about $3 million over the past three years making it available to family caregivers. Home Instead says it wants to be a community resource and maybe even get more clients.
The first thing that Moser tells the group is that when it comes to caring for Alzheimer's patients, knowledge is power.
MOSER: Know 100 things about the person you're providing care to. Take those 100 things and get them in the book.
JAFFE: The workbook is called "Capturing Life's Journey."
MOSER: Even though short-term memory goes, a lot of people with dementia, they retain those long-term memories.
JAFFE: And those long term memories and lifelong activities can be rekindled and used to give a person with Alzheimer's a better quality of life, or distract them from behaviors that could cause them physical or emotional harm. For example, Moser talks about an artist who just stopped painting when the disease took hold.
MOSER: So we ended up getting some canvases for the caregiver and she just started painting. And this happened for, you know, a few days - I think for about a week. And then all of a sudden he sat by her and that was for a couple of days. And then, all of a sudden he's grabbing the paint brush out of her hand. And now - I can't even tell you - he's got a wall of paintings that he has painted since he got this disease.
JAFFE: Arguing or reasoning or just saying no, that generally doesn't work, as Anton Vogt is finding out in caring for his friend Erica.
ANTON VOGT: If I put some money somewhere and she moves it around. She can't find it, then she thinks somebody stole it.
JAFFE: Moser says sometimes, especially if the person you're caring for has lost their short-term memory, deception is OK. It worked with another client of his who also liked to have money around.
MOSER: And she had access to money so she'd sometimes have hundreds and hundreds of dollars on her. And, of course, you know, get lost. And, you know, she'd start making false accusations. So we ended up just giving her a bunch of singles You know, and then eventually, really, "Monopoly" money when she really couldn't tell the difference.
JAFFE: But telling her she couldn't have money? That would have only upset her. Moser says you'll never be able to drag a person with Alzheimer's into the same world that you live in.
MOSER: It's really all about them and providing them the comfort and security of whatever they perceive as their current reality. You be present in their reality.
JAFFE: It's a reality where many caregivers may find themselves in years to come. With the population aging, cases of Alzheimer's in the United States are expected to double by the year 2050.
Ina Jaffe, NPR News. Transcript provided by NPR, Copyright NPR.
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