Families Coping with Alzheimer's Do Better with a Support System

Jim George used to enjoy his daily rambles through his North Hills neighborhood, sometimes walking as much as three miles. He never used to mind if his wife, Colleen, left the house to run an errand. But that was before his Alzheimer's got worse.

Now, Jim, 67, gets anxious and upset even though Colleen leaves a note as a reminder of where she is and what time she'll be home. And the solitary walks had to end after he became so disoriented that he couldn't find his way home.

Alzheimer's has changed the routine and the nature of the Georges' marriage, as Colleen has moved into the caregiver role and Jim into the one cared for. But even as she grieves the losses, Colleen has learned to look for ways to reduce the physical and emotional strain of full-time caregiving and to keep Jim upbeat and active. They have learned to rely on a community of helpers - adult children, neighbors, friends at church, an Alzheimer's Association support group - who assist with yardwork, take Jim on outings and share caregiving strategies.

I'm fortunate to be able to draw on people who love us very much,'' Colleen said.One very hard thing to learn is to accept that other people want to help.''

While scientists pursue new treatments and a cure, university researchers and service organizations have worked to determine the best ways to help families cope with the insidious disease, which afflicts one in 10 Americans over the age of 65. The goal is to help families create support systems - support for caregivers to keep them healthy, and support for Alzheimer's patients so that they can enjoy life with their dignity intact.

Everyone feels so alone,'' said Debra Cherry, associate executive director of the Alzheimer's Association in Los Angeles.Caregiving is more like a marathon than a sprint.''

With Alzheimer's, the most common form of dementia, cell death spreads through the brain, engulfing areas affecting memory, self-control and inhibition. People can live with the disease for a long time, anywhere from two to 20 years.

For Alzheimer's sufferers and their caregivers, the disease can have a profound impact on finances, health and emotional well-being. The annual price tag is steep, an estimated $18,400 for someone with mild symptoms and $36,132 for those in advanced stages, according to the American Health Assistance Foundation. The constant supervision, coupled with behaviors that include paranoia, agitation and wandering, can take a toll on the caregiver's health as well, both mentally and physically.

Depression is a common companion among caregivers. A study at the Ohio State University College of Medicine in Columbus found that 43 percent of people caring for a spouse with dementia experienced depression. The control group, made up of people who had never served as caregivers, had a depression rate of 15 percent.

Another Ohio State caregiver study found that chronic stress led to an increased risk for other diseases. Caregivers for Alzheimer's patients had unusually high levels of a protein called interleukin-6, or IL-6, said Dr. Janice Kiecolt-Glaser, professor of psychiatry.

IL-6 triggers inflammation that helps the body fight infection. But producing too much IL-6 can harm the body. High levels are associated with cardiovascular disease, osteoporosis, arthritis, type 2 diabetes and some cancers. Growing older naturally raises levels of IL-6 in the body. But chronic stress appears to boost the levels even higher, prematurely aging the caregiver's immune system, she said.

Because of the risk of depression and illness, caregivers are encouraged to get some time off. But persuading caregivers to ask family members to give them a break or to hire a professional health-care worker for a few hours can be a challenge. This is particularly true in Latino and Asian cultures, said Fernando Torres-Gil, director of the UCLA Center for Policy Research on Aging.

A lot of these cultures are very private,'' Torres-Gil said.There's a reticence to using professionally trained providers, having strangers come into the home.''

While recruiting for a caregiver study at Stanford University, Dr. Dolores Gallagher-Thompson found it was more difficult to enroll Latinos than whites. Yet Latinos reported the greatest benefits from the program, which taught coping skills and provided group therapy.

Assertive communication was a big one for most caregivers, especially Latinas,'' said Gallagher-Thompson, professor of research in the psychiatry department.Women are socialized to be accepting and not to complain. Because the primary caregiver doesn't want to appear to be complaining, she doesn't ask for help.''

In the class, caregivers were taught to make explicit requests. Rather than make a general plea for help, the caregivers presented a concrete need - for example, ``Will you take care of Mom while I go to a doctor's appointment on Monday from 9 a.m. to 11 a.m.?''

Another option for respite is finding adult day care, often offered on a sliding fee scale. At the Jewish Family Service Valley Storefront Adult Day Health Care Center in North Hollywood, about a quarter of the 45 participants have dementia. The only thing that distinguished the Alzheimer's participants were the white plastic squares attached to their name tags, which would trigger the door alarm if they wandered.

Our Alzheimer's group is in great condition,'' joked Devorah Teyer, program director.They're my fastest runners.''

The Alzheimer's participants gathered around two tables for the morning's activities. One segment had them doing simple exercises such as leg lifts in standing and sitting positions. Ramona Juarbe, oblivious to the commotion around her, drew a picture of a red house. The energetic Frances Weinberg shook her shoulders and hips and did the twist, repeating, ``Swing and sway with Sammy Kaye.''

While the day-care participants stayed busy with exercise sessions, gardening and bingo, their caregivers used the time to go to their own doctors' appointments, participate in support groups, or just unwind with a good book or a hot bath.

For caregivers who are struggling with their own health issues and physical limitations, assisted living communities may be the answer. In assisted living, residents live in their own apartments but can arrange for help with daily needs, such as dressing, grooming or bathing. These days, many assisted living communities are licensed to care for people with dementia in response to the increasingly common scenario in which one spouse has physical ailments and the other has Alzheimer's.

At Belmont Village in Burbank, the Alzheimer's residential area forms a community within the community. Those with mild to moderate Alzheimer's live in private apartments, eat meals in a common dining area, have access to secured outdoor areas and participate in activities designed to keep bodies fit and minds active. Though they live separately, spouses who reside in assisted living can visit the Alzheimer's area whenever they want, said Kevin Ward, Belmont Village community manager.

Silverado Senior Living in Calabasas specializes solely in Alzheimer's care. While the building is secured, residents are free to walk in the gardens and play with the cats and dogs that wander the hallways. Memory boxes filled with photos and other cherished objects line the walls.

The growth of these communities reflects the evolution in Alzheimer's care over the past decade, said Jeff DeBevec, director of communications at Belmont Village headquarters in Houston. Where once an Alzheimer's patient would have to go to a nursing home, today the focus is on finding arrangements that keep the person safe, comfortable and engaged, he said.

Alzheimer's is a catastrophic illness,'' said Cherry of the Alzheimer's Association.There are starting to be programs and treatments. There is more optimism.''

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c.2003 Los Angeles Daily News