Alzheimer’s Caregivers Need Care, Too

An estimated 4 million Americans currently have Alzheimer’s disease, but the illness touches many more lives when you count the number of family members and others who care for those with the disease.

While caregivers help their spouse, parent or other loved one live a life with Alzheimer’s, they also have to take care of themselves. But often, the caregiver’s own needs come second–and that can be bad for the individuals and the patients as well, experts say.

The caregiver must also serve as a link between the patient and their doctor, gathering information and making critical decisions about care.

But a new survey shows that there seems to be a gap between the information doctors say they share with caregivers and the information caregivers actually want, the data shows.

The survey, conducted for the Alzheimer’s Association during April and May 2001, interviewed caregivers of Alzheimer’s patients, as well as primary care physicians who treat people with Alzheimer’s.

They found that some of the topics that doctors thought were most important to stress–such as how the disease will affect a person’s memory and thinking process, and what to expect from medical treatments–were not as important to caregivers as other topics.

Caregivers said their biggest concerns were what to expect as the disease progresses and how Alzheimer’s affects the ability to do daily tasks, and how to cope with that. Caregivers rated other concerns, such as those deemed important by doctors, as well as how to manage difficult behavior and how long the disease will last, slightly less important.

The communication gap is important because it impacts the treatment and the care of people with Alzheimer’s disease, says Orien Reid, MSW, chair of the Alzheimer’s Association’s National Board of Directors. Reid presented the results of a survey on the topic at an American Medical Association briefing on Alzheimer’s disease June 7 in New York City.

Reid suspects that part of the problem is that when someone is first diagnosed, the initial reaction is often shock. She says that was her first reaction when she learned in 1988 that her mother had Alzheimer’s.

It’s often hard to absorb information about the entire course of the disease when it is first diagnosed, she says, especially if it is not information that is relevant to the current situation.

Instead, it is probably better to give information as it is needed–the right information at the right dosage at the right time, she says.

Others agree. “Alzheimer’s is a long haul … doing something today doesn’t mean you are prepared for what happens tomorrow,” says Steven H. Zarit, PhD, professor of human development and assistant director of the Gerontology Center at Pennsylvania State University.

Zarit says that it seems that the average length of time that many people spend caring for a loved one with Alzheimer’s is about 6 _ years–but in some cases, it can be even longer. Also, he notes, the vast majority of caregivers are family members of the patient, such as a spouse or child–and in that case, usually a daughter.

All of this can lead to stress, depression, and health problems for the caregiver. But often, caregivers don’t know where to turn, and if they do know, sometimes they are reluctant, he says.

Zarit says there are three ways caregivers can reduce the burden on themselves without sacrificing good care for their loved one.

First, understanding Alzheimer’s-related behavior problems can be a big help. For instance, repeated questions are common, and can be aggravating for the person who has to continually provide the same answers. But keep in mind that it is due to the disease and does not mean that they were not paying attention the first time it was answered.

Support from family and friends can also be important, Zarit says. One way to get everyone involved is to hold one or two “family meetings” with a skilled counselor, to get everyone up to speed on what the diagnosis of Alzheimer’s means, and what the options are.

Finally, seeking respite care–such as from an adult day care program or health aide–can also free up some of the caregiver’s stress. In fact, Zarit says, some studies show that caregivers are able to care for their loved ones longer if they take advantage of respite programs like adult day care.

Other local community- or hospital-based groups, like support groups can help, as well as local chapters of the Alzheimer’s Association, which has a new 24-hour, toll-free center at 1-800-272-3900, as well as a Web site at www.alz.org/.

The experts all agree that communication is key, especially between caregivers and doctors. If you don’t feel you are receiving all the information you need, don’t be afraid to ask, says Reid. “If families don’t have the information they need, they miss a chance to give proper care to their loved one in the early stages of the disease,” she says.

The Alzheimer’s Association survey, conducted by Roper Starch Worldwide, was supported by funds from Janssen Pharmaceutica and Ortho-McNeil Pharmaceutical.

Article By: Erin King, Medical Writer