Informal caregivers of older adults need more practical information to care for loved ones
Research Activities, September 2011, No. 373
Caring for older adults with chronic health conditions is often the responsibility of family caregivers, such as spouses or children. The value of such care is estimated at $375 billion annually. This amount exceeds government expenditures for nursing home and home health care combined. Given their critical role, family caregivers must have their information needs met if their loved ones are to receive optimal care in the home. A recent study found that caregivers have a great need for information, but that it often goes unmet.
Researchers conducted a systemic literature review to identify studies of caregiver information needs. Sixty-two studies were selected that provided original findings on the subject. Studies were conducted in the United States, United Kingdom, Canada, and Australia, as well as in several European and Asian nations. Among the chronic health conditions cited were Alzheimer's disease, dementia, stroke, and various types of cancer.
Overall, the 62 studies demonstrated an acute desire by informal caregivers for practical and timely information on their loved one's situation. Their unmet information needs included details on medical issues and where to find services. Caregivers wanted more information on treatment options and their risk/benefit ratios, as well as information on complementary and alternative therapies. They also wanted information that was tailor-made for them and their unique needs. They wanted clear explanations in a jargon-free format. They preferred proactive information so that they knew what to expect in the future. This was particularly true for caregivers of loved ones with Alzheimer's disease, where knowledge of its anticipated stages is critical. Finally, caregivers' information needs changed over time, particularly for informal caregivers of stroke survivors. The study was supported in part by the Agency for Healthcare Research and Quality (HS17948).
See "Information needs of informal caregivers of older adults with chronic health conditions," by Karla T. Washington, Ph.D., Susan E. Meadows, M.L.S., Susan G. Elliott, M.L.S., and Richelle J. Koopman, M.D., in Patient Education and Counseling 83, pp. 37-44, 2011.