HOME HEALTH-CARE AND QUALITY-OF-LIFE OF PATIENTS WITH ALZHEIMERS-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 in creasingly large role in care for this population, but home care agenc ies do not routinely collect QOL information or use this information i n care planning. Methods: A series of roundtable discussions with repr esentatives of the home care industry were held to document current pr actices by home care providers regarding the elicitation, recording, a nd use of QOL information; to derive indicators of QOL in AD patients; and to develop standardized procedures for using QOL information. Res ults from this investigation were incorporated into an epidemiological investigation of community-dwelling AD patients, comparing formal sec tor 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 indicato rs were derived, showing divergence of patient and caregiver perspecti ves. A survey of 240 AD patients compared family and formal home atten dant caregivers and showed that home attendants underutilize opportuni ties 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 f or this vulnerable patient population. More research will be required to refine QOL outcomes and develop quality assurance tools for dementi a care.