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.