Caregivers and Chronic Brain-Related Illness
Millions of Americans are caregivers. Most of these caregivers are family members or friends who have the primary responsibility for taking care of loved ones who are ill or disabled and living at home.
The responsibility of making sure that all of a loved one's needs are fulfilled is often compounded by the emotional impact of watching the person suffer or possibly deteriorate in health.
Not surprisingly, caregivers almost invariably report high levels of stress. At least half of all caregivers juggle work, family, and caregiving responsibilities.
In this section, you'll learn more about today's caregivers and how caregiving can affect your health. You'll also find tips for coping with caregiving, as well as a special section for people caring for patients with Alzheimer's disease.
A number of organizations are devoted to providing support, in many forms, for caregivers and the people in their care. If you or someone you know is a caregiver, recognize that there is help available. After all, taking care of caregivers is essential—for the sake of the caregivers and those they care for.
Who Are Today's Caregivers?
A 1997 survey of caregivers for adults with brain disorders (Alzheimer's disease, stroke, head injury, Parkinson's disease, etc.) underscores the importance of taking care of caregivers. Here's what the survey found out about caregivers:
- About three-quarters of all caregivers are female.
- Caregivers' average age is 60.
- Three-quarters of caregivers live with the patient.
- Half of all caregivers also work outside the home. Some have had to quit working or reduce their work hours.
- Caregivers spend an average of 73 hours per week providing care for the patient
- About two-thirds of patients cannot be left alone. Half of these patients are unable to perform basic daily functions such as eating, bathing, or dressing
- About one-third of all caregivers receive no help from family and friends.
Source: Family Caregiver Alliance
Effects Of Caregiving On Health
Being a caregiver is a generous act. But evidence increasingly points to the fact that caregiving exacts a huge physical, emotional, and financial toll on the caregiver—even though it can be a source of great personal satisfaction.
Many caregivers become isolated and lose touch with social contacts. This can worsen stress and have a negative impact on their overall health.
Also, caregivers may have little time to take care of their own health or emotional needs, and they may find it difficult to take time for activities that they enjoy.
Research About Caregiving and Health
Many caregivers report significant personal health problems, ranging from minor complaints to serious, chronic disorders. A number of studies have described the physical- and mental-health difficulties associated with caregiving. These include fatigue, weakened immunity, and increased risk for depression.
One recent poll found significant depressive symptoms in more than half of caregivers surveyed. A few studies have also suggested that some caregivers may experience stress-induced health changes, which may increase the risk of heart disease or cancer in some individuals.
Caregiving's chronic stress has also been linked with impaired immune-system function. This means caregivers may be more susceptible to infectious conditions like the flu or the common cold.
Caregivers' healing processes following injuries may also be slowed. In older caregivers—who may have chronic health problems of their own—lowered immunity can be devastating.
Tips for Coping with Caregiving
- Reserve some of your time and energy to take care of yourself.
- Ask for help from friends, family, or community/patient-support groups.
- Try to arrange your schedule so that you can take regular breaks.
- Ask your doctor's advice about how best to manage the patient's symptoms. This may mean by adjusting medications or ordering special equipment (such as a hospital bed or portable toilet) to help you with caretaking.
- Arrange for a home health aide, if possible, to help with certain duties or to enable you to take breaks (some insurance plans cover these services).
- Try not to do everything on your own—ask others for assistance.
- Seek help, if necessary, in managing financial and legal matters related to caregiving.
- Join a support group for caregivers, read about coping strategies, and seek resources for getting help.
Source: Family Caregiver Alliance
Caring for People With Alzheimer's Disease (AD)
Long-term, progressive dementia ultimately makes independent living impossible. This means long-term care will be necessary, whether at home, in an assisted-living environment, or in a nursing home.
Still, many spouses and relatives of people with AD choose to care for them at home. These caregivers are often called the "second victims" of Alzheimer's. Due to their immense responsibilities, they may find themselves isolated from friends and social contacts. This can negatively affect their overall health.
If you're caring for someone with Alzheimer's or any other serious progressive disorder, try not to ignore your own emotional and physical needs. Many options are available for getting assistance, including home health care, adult day care, or assisted-living programs.
Alzheimer's patient support groups and caregiver groups can also be important sources of information and referral. In addition, they sometimes coordinate "share-care" programs, which enable caregivers to take needed breaks.
Here are some other suggestions that can, in the long run, enable you to take better care of your loved one:
- Join a support group for caregivers, especially (if possible) one for caregivers of people with Alzheimer's.
- Seek psychological and emotional support from family and friends, counselors, clergy, or community groups.
- Don't isolate yourself—maintain your social networks.
- Allow yourself to take regular breaks to pursue things you enjoy doing. Arrange for others to stay with the patient if necessary.
- Don't be afraid to ask for help; seek help from community services or home-health agencies if needed.
- Schedule regular health checkups for yourself, and be sure to tell your doctor about your caregiving role.
- Be alert to signs of depression, and seek treatment if you have symptoms such as persistent sadness, sleep disturbances, or a loss of pleasure in things you used to enjoy.
Source: Family Caregiver Alliance
Find more information on Alzheimer's Disease.
This content is brought by Staying Sharp, a partnership between NRTA: AARP's Educator Community and the Dana Alliance for Brain Initiatives.
