Overcoming barriers. Home care for dementia patients.

Barriers to appropriate in-home service use by Alzheimer's families may be caregiver based, agency based, or policy based. Agency-based barriers are best addressed by modified services and training to meet the unique care demands of cognitively impaired patients and their families. Policy-based barriers may be overcome with attempts to legitimize families as eligible recipients of long-term care services. But beyond access, equity, and cost or reimbursement issues, the Duke respite research demonstration uncovered significant personal and familial barriers that require more individualized approaches. Because objectively burdened spouse caregivers are often reluctant to spend on themselves, they may wait until a crisis forces a decision to ask for help. Unfortunately, scheduled in-home respite programs are not well designed as crisis services. In addition, many families initially fear that acceptance of in-home help means relinquishment of family control to strangers. Providers should take every opportunity to preserve and sustain family control by adhering to family preferences. Finally, many Alzheimer's patients cannot rationally assess their need for assistance, and they react with outrage to home care providers. Spousal caregivers are often reluctant to oppose the patient's strong preferences out of fear of personal reprisals when the worker leaves. One additional barrier deserves special consideration. Many family caregivers believe that if the patient has a bonafide disease (like Alzheimer's), then care decisions should be made by health professionals rather than family members or social workers.(ABSTRACT TRUNCATED AT 250 WORDS)