Home health care and quality of life of patients with Alzheimer's disease

Background: Little is known about the quality of life (QOL) of people with Alzheimer's disease (AD). The formal home care sector plays an increasingly large role in care for this population, but home care agencies do not routinely collect QOL information or use this information in care planning. Methods: A series of roundtable discussions with representatives of the home care industry were held to document current practices by home care providers regarding the elicitation, recording, and use of QOL information; to derive indicators of QOL in AD patients; and to develop standardized procedures for using QOL information. Results from this investigation were incorporated into an epidemiological investigation of community-dwelling AD patients, comparing formal sector home attendants to family caregivers regarding efforts to enhance patient QOL. Results: Twenty representatives of the home care industry met over three sessions to discuss these issues. Patient QOL indicators were derived, showing divergence of patient and caregiver perspectives. A survey of 240 AD patients compared family and formal home attendant caregivers and showed that home attendants underutilize opportunities to enhance patient QOL, as referenced by patient participation in activities that require supervision. Conclusions: Collaboration with home care agencies allowed a better understanding of quality of life for this vulnerable patient population. More research will be required to refine QOL outcomes and develop quality assurance tools for dementia care.