Facing Alzheimer's: Supporting The Caregivers

By Sean Corcoran

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.


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