The Hidden Heroes of Alzheimer's Disease

Alzheimer's Association
Thursday, 19 September 1996

Their job is physically, emotionally and financially draining and can take up to 100 hours a week, yet 500 caregivers of individuals with Alzheimer's disease agreed almost unanimously (96 percent) that theirs is "a labor of love" in survey results released by the Alzheimer's Association. The survey was conducted by Yankelovich Partners, Inc.

"For the first time, the Alzheimer's Association has quantified some of the hardships caregivers face in caring for relatives with Alzheimer's disease," said Edward Truschke, Association president and CEO. "We think they deserve recognition as the hidden heroes of Alzheimer's disease. More importantly, we want to get them the help and support they need. One way the Association helps provide caregiver services is through Memory Walk, an annual walk-a-thon event. "

The Emotional Toll of Caregiving

"Caregivers' most important concern is the comfort and quality of life of their loved ones, regardless of the severity of their loved ones' condition," said Truschke. Providing that kind of care, however, takes its toll on the caregiver. Half (49 percent) of those surveyed strongly agreed that their caregiving duties cause stress within their immediate families, and 48 percent feel they do not have enough time for themselves.

Most caregivers have been caring for their loved ones for an average of four years and more than one-third (34 percent) fear they may not be able to care for them much longer. These family and personal stresses worsen as the loved ones' condition becomes more severe.

Caregivers of those with moderate-to-severe Alzheimer's disease were more likely than caregivers of those with mild Alzheimer's to describe their duties as "frustrating" (90 percent), "draining" (87 percent) and "painful" (87 percent).

The survey results indicate that the caregiving role can jeopardize their quality of life. Three-quarters (75 percent) of all caregivers are depressed, at least occasionally, and one-third (34 percent) of those caring for people with severe Alzheimer's disease are depressed frequently or almost always. Those with loved ones in a nursing home or other assisted living facility are more likely to be depressed than caregivers of individuals with Alzheimer's who reside on their own, with the caregiver or with other friends or family members. Almost half of surveyed caregivers (45 percent) feel they are not getting enough sleep as a result of their duties.

The Financial Burden of Caregiving

Caregiving for a loved one with Alzheimer's disease also has a major economic impact. Forty-nine percent of caregivers reported that they have made financial sacrifices in order to better care for their loved ones. Fifty-nine percent of caregivers have contributed some of their personal income or savings to help pay for their loved ones' care.

Collectively, caregivers have missed an average of 17 working days in the past year due to caregiving responsibilities. In fact, one in five caregivers stopped working primarily to provide care. Other experiences include loss of income (36 percent) and being turned down for a promotion (13 percent). A majority of caregivers (54 percent) are concerned about how they will pay for their loved ones' care. Sixty-four percent are concerned about having enough money to take care of their own needs as they grow older.

"At a time when most of these caregivers could be at the top of their game professionally, many of their sacrifices are career-related," said Truschke. "More than one-third report that they have reduced their work hours (36 percent), lost income (36 percent) or have become less effective at work (35 percent). Besides providing caregiving assistance, the Association is advocating for more available, accessible and affordable Alzheimer care to reduce the stress on families."

Small Improvements

Small improvements in their loved ones' condition are extremely important to caregivers, and especially those caring for people who are in the early stages of Alzheimer's disease. Eighty-six percent of all caregivers strongly agreed that any improvement in the condition of their loved ones, no matter how small, is important and more than half (56 percent) of caregivers consider a lack of deterioration an improvement.

Caregivers are generally realistic about their loved ones' prognosis and 81 percent strongly agreed that Alzheimer's disease is a progressive condition that only gets worse. Most caregivers do not expect "miracles" and 63 percent do not expect a cure for the disease within their loved ones' lifetime.

"Because of the progressive, degenerative nature of Alzheimer's disease, allowing people with the disease to be functional for a longer period of time is considered a treatment success," said Dr. Steven T. DeKosky, director of the Alzheimer's Disease Research Center at the University of Pittsburgh Medical Center. "In other words, it would be considered good news if we could slow the rate of decline in an afflicted individual. But what constitutes improvement of decline could be very subtle and subjective, so physicians rely on caregivers for their observations and what they consider important."

About the Caregivers

Most caregivers are caring for someone whom they have known intimately for most of their lives -- their parent or spouse. A vast majority of caregivers (81 percent) are women and half (51 percent) of all caregivers live in the same residence as the person with Alzheimer's disease, making theirs a 24-hour-a-day commitment. On average, these caregivers are in their mid-fifties and have an annual household income of $35,000. Thirty percent of those surveyed are the sole caregiver, although responsibilities may be shared with others as the disease progresses.

Sources of Support and Information

More than anything else, caregivers expressed a need for someone to share the burdens of caregiving from time to time. Options include home health care, a visiting nurse, respite care or adult day care. When first faced with Alzheimer's disease, physicians are the chief source of information for the caregiver. However, after the diagnosis of Alzheimer's disease has been made, the Alzheimer's Association is a key source of information and assistance with day-to-day caregiving for the vast majority of caregivers. Following diagnosis, 88 percent of caregivers surveyed say they contacted the Alzheimer's Association.

For more information, or to contact Alzheimer's Association, see their website at: www.alz.org