Aging

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Facing Alzheimer's: Supporting The Caregivers

By Sean Corcoran   |   Thursday, June 16, 2011
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June 24, 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, Sean Corcoran explores the challenges of caring for Massachusetts' more than 120,000 Alzheimers' patients.

Orleans Council on Aging Supportive Day Program

Clients at the Orleans Council on Aging's Supportive Day Program, designed for Alzheimer's patients. (Sean Corcoran/WGBH)

ORLEANS, Mass. — Orleans police Officer Kerry O'Connell holds above her head what looks like a small TV antenna, the kind that used to be common on houses' roofs. For demonstration purposes, she's using the antenna to locate someone hidden nearby who is carrying a small transmitter, about the size of a watch.

It's the same type of radio system biologists use to track wildlife. The clicks become louder the closer O'Connell gets to the transmitter. The signal can pass through concrete, steel and water. And the entire rig is designed to locate people who've gone missing — typically people with Alzheimer's and related-dementia, or even autism — who have a tendency to wander from their homes.

"Every client gets a transmitter with a specific number on it," O'Connell says. "And we're able to dial it on our locator and we can hone in on the beeping noise when we get close to the client when they go missing."

Recently, 17 officers with the Barnstable County Sheriff's Department learned how to use equipment just like O'Connell's. Boston went live with the same system this past February. It's part of a program underway across the country by Lo-Jack, a company usually associated with finding stolen vehicles. Now, Lo-Jack is involved in finding lost people. They call it Project Safety Net.

Sheriff James Cummings says Lo-Jack is providing the training and 10 receivers at no charge, which he will strategically distribute in cruisers across Cape Cod.

"We're a retirement community. Folks come down here to enjoy their retirement and unfortunately along with age comes these problems for some folks, and this puts us in a good position to be ahead of the curve a little bit and have this equipment ready should it be needed and serve the public as well," Cummings said.

Four communities on Cape Cod already have this technology. People who want a transmitter watch or anklet can pay LoJack a $99 fee and then $30 a month for the peace of mind. Cummings will do some fundraising to help out folks who might not be able to afford that. So, if someone goes missing, officers should be able to find them fairly quickly.

Alisa Galazzi of Alzheimer's Services of the Cape and Islands says efforts like this one are essential as growing numbers of Cape Cod's population need assistance staying in their homes.

"Every for-profit business should be looking at this population specifically and thinking, how can we tweak our service, how can we connect with them, how can we intersect to keep them safe, to keep them successful and to keep them in the community?" Galazzi said.

One-quarter of the 225,000 year-round residents on Cape Cod are over the age of 65. That's about double the national average. About 1 in 8 people in that population are estimated to have dementia. And the statistics are only expected to grow more dire.

Dr. Michael Markowski is one of only six neurologists on the Cape. He says the FDA has approved two classes of drugs for treatment, but they only slow the progress of the disease by a few months, if at all.

"Once they're maximized on these medications, I'll see them back when they are significant behavioral difficulties or new neurological symptoms, but there is nothing else I am offering patients to improve their quality of life at that point," Markowski said.

With little comfort available in the form of pharmaceuticals, Emerald Physicians has a team of a half-dozen patient advocates who check in with caregivers and assist any way they can. Advocates at Emerald say they spend between 30 and 40 percent of their daily workload advising caregivers.

Those informal, unpaid caregivers represent tremendous savings for government -- as much as $4.3 billion in annual care in Massachusetts alone. And the numbers will continue to grow. Molly Perdue of Alzheimer's Services says that every day in the United States, between 7,000 and 10,000 baby boomers turn 65 years old, and that will continue for about the next 20 years.

"When you think about how much money informal caregivers save the government, you would think of course we need to do everything we can to keep informal caregivers doing what they're doing because it's such an important service," Perdue said.

There is growing awareness among policy makers that home caregivers need to be supported, if for no other reason than the country's Medicaid system cannot handle the growing costs. Through a series of state grants, Galazzi says efforts are underway to create support system modeled after programs already in existence for families with members who have disabilities.

"We should be proactively looking at how to keep people safe and successful in the community," Galazzi said. "And they've done a great job on the disabilities side. And I think that we should be applying all of those great strategies to the aging side of the equation."

The importance of long-term care insurance also is part of the mix. Right now less than 10 percent of Americans have insurance to cover them if they need long-term care, either at home or in a facility.

Part of President Obama's healthcare plan includes the creation in the next year of a long-term care insurance plan through the federal government. It's expected to include automatic deductions from workers' paychecks, similar to the way Social Security works. But even with such insurance, Galazzi says the importance of creating a regional network to support informal caregivers is only increasing. And Cape Cod is at the front of the line.

"We really need to come together as a community with multi-levels, from the hospital to the different leaders in the towns, and create a whole plan, a community plan of how we can be the example for the country, because we are a microcosm of where the country is going to be in 15 years," Galazzi said.

The Massachusetts Executive Office of Elder Affairs is putting together a state plan to deal with the growing numbers of people with Alzheimer's and to help increase access to support services, so patients can stay in their community as long as practical, even if they don't have caregiver support. Just where the effort will go and what final legislation will look like is unclear. What is clear is that Cape Cod, and Massachusetts as a whole, needs a robust chronic care network to support people now, and in the future, living with Alzheimer's disease.

Facing Alzheimer's: Caring Places

By Sean Corcoran   |   Thursday, June 16, 2011
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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.

Bob Mauterstock and his mother, Ruth, at Harbor Point at Centerville

Bob Mauterstock and his mother, Ruth, at Harbor Point at Centerville. (Sean Corcoran/WGBH)  

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.

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