This page was last updated on April 15, 1999

When Alzheimer's Disease strikes, it typically victimizes both the person diagnosed and the family who will likely become caregivers. In the past, scant attention was given to this latter group. Yet studies show that caring for a person with Alzheimer's Disease can result in serious emotional, psychological and physical consequences. While researchers continue to search for ways to reverse and cure Alzheimer's Disease, it is the increased attention, support and recognition afforded to caregivers that is perhaps the most promising recent development in Alzheimer's care.

The burden of caring for a person with AD is well known. As the patient's condition progresses, caregivers often find themselves cut off from their friends and regular social activities. Studies show that the average caregiver with a full-time job will miss over three weeks of work a year, and that up to 1/5 quit their jobs altogether. Caregiving has even been tied to an increase in depression, compromised immune responses, and a greater use of medication and psychotropic drugs. Few caregivers are prepared for this impact.

Inadequate training is one of the biggest obstacles to quality caregiving. It is often assumed that caregivers will know how to "handle" a loved one with AD. But AD presents a substantially different set of challenges than raising children. The personality and behavioral changes a patient may undergo in the early stages of dementia can baffle the unprepared caregiver. And because each Alzheimer's case is unique, this training must be highly individualized.

"We've found that behavior that's troubling to one person isn't necessarily troubling to another," says Kathleen Buckwalter, RN, a researcher at the University of Iowa. "For some people incontinence is the last straw. Other people say, 'What bothers me the most is that they eat with their fingers.'"

Another essential component for adequate home care is support of the caregivers themselves. Caregivers who take advantage of programs such as support groups, adult day care and respite care (a temporary nursing home-like service where patients may stay for a limited number of days) not only feel healthier, but also keep their Alzheimer's patient at home longer than those who do not. Whenever possible, caregivers should also consider hired companions, home health aids and even nursing assistance.

There are some four million Americans with Alzheimer's disease. That number is expected to grow dramatically in the coming decades, with a commensurate increase in the number of Alzheimer's caregivers. To ease the impact of this demographic shift, the perceived burden of caring for a person with Alzheimer's Disease must be reduced.

"Caregiving is burdensome, but it's also very rewarding," says Nancy Robinson of the University of Louisville, who is among the growing number of researchers who are emphasizing the positive aspects of caregiving. To illustrate her point, Robinson draws from her own experience running an outreach program that teaches community organizations how to support the caregivers within their midst. "I teach churches that they need to pay attention to caregivers, because caregivers will enrich their faith group," she says, citing research that shows that caregivers practice more spiritual behavior than non-caregivers.

Increasing public appreciation of caregivers is not the only solution, however. Many experts assert that entire care systems, such as Medicare, will have to be retooled, moving away from an acute care model to a chronic care model that can provide better caregiver support. Researchers are already exploring novel approaches to caregiver financing. For example, the Consumer-Directed Home Care Project, which is sponsored by the Robert Wood Johnson Foundation, is studying ways to provide caregivers with more flexibility in the way they spend their Medicare dollars. Other proposals include providing tax cuts to Alzheimer's caregivers. "We now have models of behavior skills training, social support models, and education for caregivers that we know work," says Buckwalter.

Eventually, most caregivers will reach a point where they will have no choice but to choose a nursing home facility for the patient. There are three broad categories of residential care for people with Alzheimer's Disease: independent living, assisted living, and nursing home facilities. The first offers housing only, and may be suitable for those who can still manage basic activities, such as handling money or preparing meals. Assisted living facilities provided residents with room, board and minimal help according to their needs. Nursing homes, which offer 24-hour care with skilled nursing, may be best for patients with severe behavioral problems, medical needs, or difficulty communicating.

Some nursing homes have separate facilities known as Special Care Units that cater to the needs of demented adults. Although this service is not yet standardized, Special Care Units tend to be more tolerant of demented behavior and their staff are usually better trained in dementia issues.

The final housing choice for Alzheimer's patients are Continuing Care Retirement Communities, comprehensive facilities that offer all three residential options within the same facility; the patient's care changes according to their condition.

The caregiver's role need not end when the person with Alzheimer's disease enters a professional facility. Although they are no longer providing the care themselves, they may assume a new role as monitor of the care being provided by others. Former caregivers are now encouraged to work with the professional staff to ensure that the patient's needs are met. In one innovative program carried out at a number of Midwestern nursing homes, staff and family members were encouraged to create caregiving contracts in which family members committed to participate in specific ways, such as feeding the patient at mealtime.

Eventually, Alzheimer's disease will run its course, and the patient will die. Caregivers should plan for this eventuality by preparing for whatever practical steps must be taken -- notifying the doctor, for example, or prepaying for a funeral. The possibility of the patient's death should also be discussed well in advance with family, especially children. If the patient or family is religious, clergy should also be consulted.

It is often assumed that once the person with Alzheimer's Disease has passed away, the caregiver will experience a sense of relief because they can return to their regular life. This is not always true. Caregivers who have dedicated years to an Alzheimer's patient frequently struggle with depression as they search to find new meaning in their days.

Alzheimer's caregiving is not a temporary condition. It is a way of life, and former caregivers should be recognized for their skills. Kathleen Buckwalter suggests former caregivers should be given the option of being incorporated into the health care network, so they can share their hard-won experience with those who are new to the disease. "Partnering them with people who are newly diagnosed would be the ultimate recognition of their days as caregivers, and a salute to their expertise."