June 22, 2011
The Alzheimer's caregivers’ story is often one of sustained stress, exhaustion and isolation. Rates of depression, poor nutrition and chronic disease among caregivers of Alzheimer's patients are higher than for non-caregivers. In our special series, Facing Alzheimer's: The Caregivers' Challenge, WGBH's Sean Corcoran explores the challenges of caring for Massachusetts' more than 120,000 Alzheimers' patients.
CENTERVILLE, Mass. — The goal of many people with Alzheimer's disease and their families is to find a way for the person to spend their final days in their home. But oftentimes the burdens associated with the disease makes that impossible. About two-thirds of people dying with dementia do so in nursing homes.
Ruth Mauterstock is 90 years old, and she knows there's something wrong with her memory. She looks at the pictures on the wall of her studio-style apartment, and they seem to confuse her.
"I don't have too much remembrance. Because I've gotten…what was it I had?" she asks her son, Bob.
"Well, you've forgotten some things," Bob says.
"I've forgotten some things."
"As you've gotten older. And that's why I have the pictures," Bob says.
"He has all these pictures."
Bob Mauterstock visits his mother twice a week at the assisted-living facility Harbor Point at Centerville on Cape Cod, and he often brings his IPad. It's loaded with pictures of graduations and birthday parties that date back to when Ruth was just a girl. Bob says the photos help her remember.
"That's me in college," Bob says. "That's when you took me to college."
"Where did you go to college again? I can't remember."
"Princeton," he says.
"Oh! Ha ha. How could I forget that?" Ruth exclaims.
When Harbor Point opened 11 years ago, it was the first assisted living facility on Cape Cod specifically for people with Alzheimer's and memory impairment. It used to be that the only option outside the home for people with Alzheimer's was a nursing home. But over the past decade, the elder industry has reacted to the growing number of Alzheimer's patients, creating assisted-living facilities where almost all patients can spend the duration of their lives.
"People don't come here to get better, but they come here to live well within the disease process," says Sandra West, Harbor Point's executive director. "The perception in this generation has been, don't move me to a nursing home. Well, we're not a nursing home, and it takes a visit to come in and look around and get the feel of the community."
West says Harbor Point feels more like a bed and breakfast than a long-term care facility. And she's right. It has thick carpets and art-covered walls. Residents attend yoga classes and tea parties. Workers can assist with everything from bathing to eating, but unlike nursing homes, skilled nursing care is not provided. And the difference from a traditional assisted-living facility is that everything is geared towards making things easier for the memory-impaired.
"There are a lot of things that make a big difference in this community. Things like non-glare glass on the art work. Darker walls behind the commode in the bathroom, with a dark seat to help raise it up so that a person with memory impairment can actually see behind them. We use red dining plates to help with the amount of food that will be eaten because they can see better with the red plates. Wider hallways. Brighter lighting. Easy access to the outdoors. No thresholds; everything level. Things like that."
Before arriving a year-and-a-half ago, Ruth lived in a traditional assisted living facility in Longmeadow, about three hours away. But she began having trouble caring for herself, and bringing in home health aides only confused her. She didn't need skilled nursing care because she's generally healthy, and Bob was relieved to find an assisted-living facility near his home on Cape Cod that specializes in memory-impairment.
"All of us fear we are going to put them in a place where, number one, they are going to hate. And number two, they're not going to be taken care of and will be left alone. And that is why you need to visit some of these places and talk to families before you make your decision where you want them to be," Bob Mauterstock said.
One of the biggest obstacles families face is financial. Under current law, an individual's assets must be nearly depleted before the federal government will step in under Medicaid. The qualification criteria is complicated, and many loopholes that previously allowed people to give away assets in order to qualify have since been closed. The reality is that very few people can afford care costs for the duration of the disease. In 2009, the national average for a year at an assisted living facility specializing in dementia care was about $55,000. A nursing home was about $87,000. In Ruth Mauterstock's case, Bob says she pays $250 a day, which is based on the level of care she needs.
"It's so complex," Bob said. "It's incredibly complex, and most families have a real difficult time dealing with it. The sources of funding, where you get funds, what you can do and can't do, is very complicated and very difficult."
When it comes to sorting out all the finances, Bob has a leg up. He was a certified financial planner before he retired. Since then, he's taken an interest in long-term care issues, even writing a soft-cover book called, "Can We Talk? A Financial Guide for Babyboomers Assisting Their Elderly Parents."
"I learned for myself being an only child, or just a child, how difficult it is to tell your parents or parent what to do. It is a reversal of roles that is very hard to take on," he said.
People who work with and advocate for Alzheimer's patients and elders commonly recommend buying long-term care insurance, which pays for both institutional and home care. But premiums are expensive. Tom Grape is CEO of Benchmark Senior Living, which operates 44 senior living communities in New England. He says the industry is prepared to handle the growing number of Alzheimer's patients — a population expected to reach 140,000 people in Massachusetts alone in the next 15 years — but cost will continue to be an issue for most families.
"Personally, I think long-term care insurance is a great solution for the whole longer timer issue of funding elder care, but it's simply not widely held," Grape said. "It's growing, but I think we have four, perhaps five percent of our residents are paid for through long-term care insurance."
Bob Mauterstock, who is now 65, purchased an extensive long-term care policy more than a decade ago after it saved several of his former clients from financial ruin. But it was too late to buy such insurance for his aging mother. And once she was diagnosed with Alzheimer's seven years ago, talking about anything related to finances or end-of-life care became impossible.
"For the first time, yesterday she repeats to me, 'I lost my memory. Does this happen to everyone? Does everyone experience this?' And for the first time yesterday she mentioned the word Alzheimer's," Bob said.
The most recent census numbers show that about 54,000 residents of Cape Cod are aged 65 or over, which translates into an estimated 9,000 people living with Alzheimer's here. There's about 120,000 state-wide. Bob Mauterstock says he didn't expect that his mother would be one of them, but he didn't leave it to chance. Ten years ago, when she was still clear-headed, he sat down with his Mom to talk about her final wishes. He says it may have been the most important conversation they ever had.
FACING ALZHEIMER'S: THE CAREGIVERS' CHALLENGE