This report describes the implementation and findings of five six groups conducted for the Alzheimer's Association. The focus groups consisted of family members of persons with dementia who were living in or had recently been discharged from an assisted living facility. Our goal in convening these groups was to use the information provided by family members to help define quality in assisted living from the consumer's perspective. Specifically, we wanted family members to share their experiences and insights about assisted living. Using that information, we plan to generate a series of quality measures that will be used in a larger study of assisted living. That study, a National Study of Assisted Living for the Frail Elderly, is currently being conducted by Research Triangle Institute (RTI) for the U.S. Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation (ASPE). It will examine a variety of issues, including the quality of care and role of assisted living facilities, by collecting primary data on 2,200 facilities across the country, with on-site data collection in about 700 facilities, interviewing the operators, 1100 staff, and more than 3200 residents. We hoped that by interviewing family members we could better inform our selection of quality measures and improve the ASPE study's ability to generate useful information about assisted living and its role in providing care to persons with dementia.
In addition, we hoped the information we collected in the focus group interviews would generate useful information for the Alzheimer's Association and for families of persons with cognitive impairment about assisted living. Thus, in addition to developing valid measures of quality, we had several other specific objectives that guided the study. Thus, we structured the focus group discussions and analysis to achieve the following goals:
- To develop an understanding of the values, perspectives, experiences, and expectations of family members with respect to assisted living facilities and care of people with cognitive impairment;
- To arrive at an understanding of the issues people face in the process of selecting an assisted living facility for a relative with cognitive impairment;
- To learn more about the sources of information and types of information families use in selecting an assisted living facility;
- To determine what constitutes good and poor quality in assisted living facilities from the perspective of family members; and
- To determine whether family members' concepts of key elements of quality differ by the level of their loved ones' cognitive impairment or functional limitations and whether their definitions of quality when selecting a facility change after the loved ones have lived in a facility for a period to time.