What is the role of the family and caregiver in Alzheimer’s treatment?
Perhaps one of the greatest costs of Alzheimer’s disease is the physical and emotional toll on family, caregivers and friends. As it makes inroads into a person’s memory and mental skills, Alzheimer’s also alters his or her emotions and behaviors. Patients can experience extreme agitation and feelings of anger, frustration and depression. They can begin to exhibit bizarre behaviors such as pacing, wandering, screaming and physical or verbal aggression. These changes in a loved one’s personality, the need to provide constant, loving attention for years on end and the physical demands of bathing, dressing and other caregiving duties are major reasons for caregiver exhaustion and depression and for placing persons with Alzheimer’s in nursing homes.
The caregiver or family member of a person who has Alzheimer’s faces many challenges, both in adjusting to new roles and coping with the profound changes in a loved one. If you’re facing this role, knowing what to expect can help you cope better. In turn, you’ll be able to do the most good for your loved one. In fact, caregivers’ participation in education programs and support groups – sometimes called “caregiver interventions”- is now viewed as a critical facet of care for people with Alzheimer’s, one as essential as pharmacological therapy.
Research shows that when family members and caregivers are educated about the disease and involved in the person’s care, the person who has Alzheimer’s benefits. When the family and caregiver of a person with Alzheimer’s understand the disease and learn how to communicate and interact with the person in ways appropriate to the disease stage, they are better able to reduce behavioral problems and improve the quality of life for all involved.
What can I do to be better prepared to help my loved one with Alzheimer’s disease?
As the family member or caregiver of a person with Alzheimer’s, one of the most important things you can do is increase your knowledge of the disease and its management. Here are some of the ways you can do this:
- Visit a local library or book store to find books about Alzheimer’s disease and about coping as a caregiver.
- Join a support group for caregivers, or participate in Internet support networks
- Get involved with local organizations that serve the Alzheimer’s community in your area, such as your local Office for the Aging, or regional Alzheimer’s Association chapter. Through these organizations, you can learn about programs and services available in your community, and take advantage of them!
- Ask your doctor to help you locate services appropriate to your loved one’s needs, and ask if he or she can recommend quality programs.
What types of caregiver education programs are beneficial?
Caregiver interventions come in many different forms, and ongoing research funded by the National Institute on Aging is investigating which programs and program components are most beneficial. Strong evidence backs the use of interventions that go beyond education to include various forms of psychosocial support (psychological counseling within the context of one’s social role) and/or training about techniques in behavioral management.
- programs that educate families as a group about psychological issues faced when a loved one has Alzheimer’s;
- programs that combine extensive individual and group counseling with participation in support groups;
- home-based training programs that teach caregivers how to manage behavioral problems in people with Alzheimer’s.
Studies show that such programs can significantly delay the time to placement in a nursing home, which is often precipitated by unmanageable behavioral problems. In addition, participating in these types of interventions can reduce depression, anger, tension, fatigue and confusion in caregivers.
Should caregivers be concerned about their personal health?
At the same that you are managing the health and day-to-day needs of your loved one, you must not overlook your own health and well-being. Your health can suffer from the stress of round-the-clock responsibilities and the emotional toll of witnessing the disease’s devastating progression in a loved one. Be mindful of your physical, psychological and spiritual needs. By taking care of yourself, you’ll be able to better care for your loved one.
Studies have shown that caregivers who are under chronic (prolonged) stress may have a diminished immune response, which can potentially make them more slow to heal after injury and more susceptible to common infections such as the flu or common cold. To combat this, caregivers need to learn how to manage stress and find ways to relieve the tremendous burden of constant care for a loved one. Don’t become isolated; enlist support from other caregivers, a caregiver support group, family and/or friends so you can carve out time to pursue activities that you enjoy and maintain social connections.
Many communities or long-term-care facilities offer respite programs that enable caregivers to take needed breaks from caregiving while knowing their loved one is well taken care of. Such services may be available from home healthcare agencies, assisted-living facilities or nursing homes. Enrolling the person with Alzheimer’s in an appropriate adult day care program can also provide a necessary period of respite for the caregiver. In later stages of Alzheimer’s, it may be necessary to investigate hospice care for your loved one.