Alzheimer's disease is a tragedy that strikes twice, affecting not only the patients themselves, but also the families and friends who watch a loved one suffer through the disease. In addition to the emotional stress, there are financial, medical, and legal responsibilities that confront family members.
In the U.S., some 80 percent of Alzheimer's patients live in private homes, where they are cared for by families and friends. Since an individual with a diagnosis of Alzheimer's can live for a decade or longer, the demands can be staggering.
It is important to acknowledge the tremendous burden Alzheimer's disease places on caregivers. Many patients in the late stages of the disease require round-the-clock supervision. At the same time, caregivers must juggle their other responsibilities, possibly including jobs and children of their own. As a result, caregivers often fall victim to depression and stress-related disease.
If you suspect that a spouse or parent may have Alzheimer's disease:
The first important step is: to arrange for a thorough medical evaluation. Once Alzheimer's is confirmed, there are medications available that can help delay or reduce symptoms of the disease.
The second step is to get educated about the disease: Learn what to expect and when to expect it. One of the best resources is the Alzheimer's Association, a nationwide network that provides education and support for patients and caregivers. Call 1-800-272-3900 or visit www.alz.org to find a local chapter of the association.
(For information on other associations and resources, visit our website: www.memorylossonline.com/resources and click on Alzheimer's Disease.) Local hospitals may also offer educational programs for caregivers. Arming yourself with information may not change the course of the disease, but it will help you feel a little more in control.
Caregivers should then take a third step: realize that help is available and ask for what you need. Don't feel embarrassed to tell friends and family if you feel overwhelmed. Let someone else share the responsibility, or at least lend a hand.
Consider joining a support group where others in the same situation can exchange ideas and let you know you're not alone. If you care for an Alzheimer's patient in your home, make use of "respite services," such as day programs for Alzheimer's patients that allow caregivers to take a break-possibly to address their own health needs. A paid home health aide or even a friend or relative can "cover" for you one morning a week while you take some time for yourself.
It will always be hard to face Alzheimer's disease, but facing it from a position of knowledge and support can make it just a little easier.
Sincerely, Catherine E. Myers
Memory Disorders Project at Rutgers-Newark
Copyright © 2002 Memory Loss and the Brain