Plight of Alzheimer’s Caregivers Is Gaining Attention

Nancy Reagan, the former first lady, knows the despair of watching a loved one racked by Alzheimer’s disease. Lucy Chela Allen has felt it too, nursing her ailing mother day after day in a modest apartment on the edge of Harlem.

As the number of Americans afflicted with Alzheimer’s climbs past 4 million, the ranks of beleaguered caregiving relatives also swell--millions of elderly spouses or grown children whose burdens make them highly vulnerable to emotional, physical and financial strain.

“I didn’t have friends, I didn’t feel I could cope,” said Allen, 49, recalling difficult years juggling her caregiving chores and a middle-school teaching job. “I felt no one really understood what I went through--what a hardship and sacrifice this was.”

Many caregivers feel such isolation as they tend to the basic needs of loved ones whose memories and capacities have faded. Yet the Alzheimer’s Assn., devoted to raising national awareness of the disease, is heartened by signs that caregivers as a group are finally gaining recognition, even figuring in policy proposals of the presidential campaign.

“There is more conversation about caregivers and elder care than we’ve seen in a long time,” said Judy Riggs, the association’s director of state and federal policy. “Bringing visibility is very important, so everyone realizes that long-term care is a costly proposition. It’s not a problem we can solve cheaply.”

Alzheimer’s, which affects one person in 10 over 65, already costs the U.S. an estimated $100 billion a year, and the price tag will soar as the elderly population increases. The Alzheimer’s Assn. says 14 million Americans will have the disease by the middle of this century unless a cure or prevention is found.

The financial toll on relatives can be staggering, because neither Medicare nor most private health insurance covers the care that an Alzheimer’s patient may need for 10 or more years. For patients staying at home, relatives either provide care themselves or pay an average of $12,500 per year for outside help. The cost of nursing-home care averages more than $40,000 annually.

Beyond the expenses, caregivers face a higher-than-average risk of depression, stress and ill health. Elderly people strained by caring for an ailing spouse were 63% more likely to die within four years than other spouses, according to a University of Pittsburgh study.

Psychiatry professor Richard Schulz, who led the study, said many caregivers are unable or unwilling to take advantage of support programs offered in a growing number of communities.

“They feel they don’t have time to go to a support group,” he said.

Allen fit that description. From 1994, when she felt obliged to move back in to her mother’s apartment, until last year, she devoted virtually all her free time to her mother’s care because Medicaid funded only 36 hours of outside help per week. Last fall, she was able to obtain extra Medicaid coverage to get outside help 12 hours a day, seven days a week.

Her mother, now 87, sits quietly by a window, unable to carry on a conversation and seemingly not recognizing her daughter. Yet Allen is now able to see past the despair and find satisfaction in repaying the love that her mother gave her over the decades.

“There’s a major life lesson here,” she said, “and I’ve learned so much.”

At the Alzheimer’s Assn.’s New York City chapter, education and training coordinator Paulette Michaud presided over a recent meeting for family caregivers, urging them to join one of the city’s many support groups. “People in support groups do better than those who don’t join,” she said.

Later in the evening, at a session with four caregiver families, she empathized when they complained about doctors who lacked expertise in coping with Alzheimer’s.

“Doctors do feel impotent around this disease,” Michaud said, urging the families to shop for a physician. “This illness is too long a process for you to suffer through medical advice that isn’t useful to you.”

Three sisters tearfully told Michaud how they struggle with guilt when they leave their ailing mother after visits to her nursing home.

“You are human beings--you have limitations,” Michaud said consolingly. “I don’t want you beating yourselves over this.”

‘I Felt So Overwhelmed’

Donna Zinczenko of Philadelphia said she regrets not having taken advantage of Alzheimer’s Assn. support programs while trying to care for her mother before she was transferred to a nursing home.

Zinczenko, 47, said her mother refused to allow outside help into her home or travel to an adult day-dare center.

“It was a power struggle,” Zinczenko said. “Even though she was in a depressed state, she held on tightly to this little bit of independence she had.

“I felt so overwhelmed with the minute-by-minute, day-by-day execution of her care that I didn’t turn to the resources that were out there. I wish I had. The hardest thing is for people to accept the help that is out there.”

New ways of helping are evolving constantly, such as teleconferencing and Internet connections to provide support for caregivers who feel they can’t venture from home. Adult day-care centers and respite programs are proliferating.

Experts also are looking for ways to ease the physical toll on caregivers, who are particularly prone to neck and back problems as they lift or escort a patient.

Laura Gitlin, director of homecare research at Philadelphia’s Thomas Jefferson University, oversaw a recent trial in which occupational therapists made a series of visits to caregivers to discuss ways of coping with specific problems.

The therapist might suggest how to simplify daily tasks to enable the patient to participate--for example, arranging articles of clothing so they are easy to select and put on.

The therapist might suggest adjustments in the home to enhance safety or propose simple activities--sorting of beads or coins--to engage the patient’s attention long enough to afford the caregiver occasional free time to rest or shower.

Sometimes the strain becomes unbearable. Last year, a New York man committed suicide by running his car in a closed garage and accidentally killed his mother as well when fumes infiltrated her bedroom. The woman suffered from Alzheimer’s, and the son was struggling financially because he had quit his job to care for her.

Some Ethnic Groups Shun Outside Help

Nancy Reagan, in a newly published book, voices the sentiments of many Alzheimer’s caregivers as she describes the effect of the degenerative brain disease on her husband, Ronald Reagan.

“You know that it’s a progressive disease and that there’s no place to go but down, no light at the end of the tunnel,” she writes. “You get tired and frustrated, because you have no control and you feel helpless.”

The disease ravages families across the social and economic spectrum. But researchers say ethnic groups differ in the willingness to accept outside help.

“For a lot of Hispanic families, it’s extremely embarrassing, almost shameful, to admit there’s a relative who has dementia--it suggests there’s something wrong with the bloodline,” said Dolores Gallagher-Thompson, a psychologist at the Stanford University School of Medicine, who has worked with Latino families.

She said most of the families she worked with proved to be eager for assistance and advice once they overcame initial mistrust.

“We had to spend time shifting the emphasis from the patient to the family,” she said. “We don’t want the family to lose sight of the fact that they’re important in this.”

The two major presidential candidates also have promised not to lose sight of the role played by family caregivers. Vice President Al Gore has proposed a $3,000 per year tax credit to help compensate them, saying their sacrifices “are almost impossible to imagine.” His Republican rival, George W. Bush, has proposed a 100% tax deduction for long-term care insurance premiums.

Judy Riggs of the Alzheimer’s Assn. says none of the current proposals comes close to meeting the mounting costs. She suggests that long-term health care eventually will have to be covered by broad-based health insurance plans, the same way acute medical care is now.

“It’s important that people pushing these proposals understand--the problem won’t go away,” Riggs said.