FCRP Policy Statement

Panel studies of families caring for elderly patients at home with physical and cognitive disorder may provide direction for refining policies regarding long-term home care. These conclusions are drawn from interviews with over 550 Michigan families caring for their elderly relatives. These families have been providing this care for an average of four or more years.

Despite caring for patients with dependencies similar to those of nursing home residents, family members use very few community services. Not all families want or need services, but for those that do, services are not used because families cannot afford services, do not know how to engage them, are unsure what patient-related conditions warrant their use, and have found them to be insensitive to the needs of their patients.

We recommend that the medical care system assume greater responsibility for linking families with community care and instructing them when and how to use these services. Criteria for eligibility for home care might be geared toward patients who need assistance with mobility and who are incontinent. Patients with such needs require more assistance than those with self care needs (e.g., bathing and dressing).

Patients with cognitive impairments demand more supervision and require special care and consideration not often available from community agencies. Continual supervision for a patient with mid-stage Alzheimer's Disease may be more demanding during a 24-hour period of time than caring for those who need help with dressing and bathing. Respite services need to be developed and delivered in a manner acceptable to these families. Established caregivers do not vary in their psychological reactions to caring over time. Despite the fact that some patients deteriorate and others improve, caregivers vary only slightly in their levels of depression. Therefore, assistance to families providing home care should not be premised upon the psychological state of the caregiver. Instead, assistance should be premised upon assessment of the patients' physical and cognitive deficits, upon current level of involvement of caregivers and others, and upon patients changes over time.

Finally, the intact family caregiving situation should be reassessed periodically. Services should be delivered after consideration of the needs of both the patient and caregiver. Only in this way can community-based and home-centered long-term care meet the needs of the growing population of elderly patients and their family caregivers and enable the family to continue providing this needed care.

This research supported by grant #2 RO1 AG6584, "Caregivers' Responses to Managing Elderly Patients at Home," funded by the National Institute on Aging, Charles W. Given and Barbara A. Given, Principal Investigators.