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The purpose of this PEF is to provide introductory information on effects of caregiving on the caregiver of an ALZHEIMER patient, offer tips for caregiving and management of the home environment, and list reliable sources of support and additional information.
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Q. What effects can Alzheimer's disease have on a caregiver?
A. Alzheimer's disease affects not only the person who has it, but everyone in the family. Family members and friends who take care of the person with Alzheimer's disease often feel many kinds of stress. As the person needs more and more care, the caregivers find that they are cut off from friends and activities. Even the most loving caregiver may resent having to cope with a loved one's changes in behavior and dependence. This disease can also cause money problems for the caregivers. Studies have shown that most people who have full time-jobs and are caring for someone with Alzheimer's will miss more than three weeks of work a year. One in five will quit his or her job to be a full-time caregiver.
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Q. I'm concerned that I may become ill and unable to care for my loved one. How can I prevent this?
A. This is a common concern of caregivers, especially when there are few
family members in the area.
- It is important to take care of yourself. This means getting enough sleep, eating well, and taking care of your own health problems.
- You need to learn how to deal with the stress of taking care of your loved one. You can do this by talking with a social worker or nurse, or taking classes to learn ways of coping. You might also talk with other people who are Alzheimer's caregivers and attend support groups.
- Find out about resources in your community. Family members and friends can help get you through this.
Q. Can Alzheimer's patients be cared for at home?
A. In the early and middle stages of Alzheimer's disease, most patients can be cared for at home. More than half of all Alzheimer's patients continue to live at home. 80 to 90 percent of these rely on family and friends for care. A nursing home is often needed in the later stage.
Q. Are there some general guidelines to help me in my caregiving at home?
A. In the early stage of the disease, you may find it helpful to:
- Set up daily routines.
- Avoid new situations as much as possible.
- Keep the patient safe. Persons with Alzheimer's may forget to turn off the iron, or wander outside and get lost. Learn about the Safe Return program (http://www.alz.org).
- Many caregivers "overdo" for their loved ones. Studies have shown that many patients can help in their own daily activities if given cues and extra time.
- Changes in the patient's personality and behavior can be puzzling. With time, caregivers will learn to recognize early signs of upset in the patient. They can then learn what will help. This helps to make caregiving easier and less stressful.
Q. Do I need to make changes in our home?
A. Look around your house and reduce clutter. Do not leave things on steps. Use bright lights in your house. Repair loose steps, rugs or cords that might cause falls or tripping.
Q. Do I need to talk with my loved one differently than usual?
A. The following suggestions may make it easier for you and your loved one to understand each other and decrease frustration for both of you:
- Make requests in a positive way. For example, "Please stay here with me", rather than "Don't go out there."
- Keep your sentences short, with one major idea.
- When offering choices, limit the options to two. The person with Alzheimer's has difficulty tracking more than one options.
Q. Are caregiver support services helpful?
A. Adult day care and support groups can help caregivers keep their loved one with Alzheimer's at home longer. Respite care is a nursing home type service where patients may stay for a few days. The caregivers who use these services feel healthier and find caregiving more rewarding than the caregivers who do not use these support services.
Q. What can a caregiver do when home care is no longer enough?
A. In time, it will no longer be possible for the caregiver to give the care their loved one with Alzheimer's needs in the home. Choices for the care for these patients fall into three broad categories.
- Assisted living facilities
- Nursing homes
- Continuing Care Retirement Community- a facility that offers different levels of care "under one roof."
Q. Where can I go for more information?
A. The Alzheimer's Association, a national organization with chapters across the country, can be reached at 800-272-3900, or on the Internet at http://www.alz.org
Alzheimer's Disease Education and Referral Center can be contacted at 800-438-4380; or by email at: adear@alzheimers.org
Two additional resources are
The Family Caregivers Alliance (800-445-8106; website: http://www.caregiver.org and the National Family Caregivers Association (800-896-3650; website: http://www.nfcacares.org
Many caregivers find books such as The 36-Hour Day (Mace & Rabins) useful. Caregiving books are readily available at local bookstores.
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