Family Members' Views: What is Quality in Assisted Living Facilities Providing Care to People with Dementia?. 2.2 Rationale for Focusing on the Views of Family Members

02/01/1997

RTI conducted a prior study for ASPE, Analysis of the Effect of Regulation on Quality Care in Board and Care Homes (Hawes et al., 1995). As noted earlier, this study found that an estimated 40 percent of residents had moderate to severe cognitive impairment. Our study used only cross-sectional data, so analysis or resident outcomes that are appropriate for elders with dementia was not possible. Further, since our study protocols called for use of staff members as proxy respondents for residents with moderate to severe cognitive impairment, we did not have measure of satisfaction or self-reports of unmet care needs from residents with dementia. Finally, while we could assume that our structural and process quality measures and operational definitions for these measures (e.g., safety, availability of social and recreational aids, cleanliness, staff knowledge, use of psychotropics) were as relevant to the care of persons with dementia as to persons with other illnesses and disabilities, we had no sound empirical evidence to support this assumption.

For cognitively intact residents in board and care, we had information from interviews with nursing home residents about how they defined quality in a residential long-term care setting to guide us (Spaulding, 1985). No similar data, however, were available for residents with dementia. In addition, we did not find evidence indicating a strong link between the process and structural measures selected and the outcomes of persons with dementia, a link that is generally thought to support the relevance or validity of the process and structural measures (e.g., Donabedian, 1968, 1990). Thus, at the end of the Board and Care study and start of the ASPE Assisted Living project, we decided to pursue mechanisms for developing cross-sectional quality measures for care of persons with dementia in which we could have greater confidence.

The development of quality measures relevant to care of persons with dementias is complicated by the perception that they are not good informants -- or at least that one cannot ask for self-reports and then depend on their responses to be reliable (e.g., consistent and related to the care received), particularly among persons with memory impairment. While some observers argue that many persons with cognitive impairment are capable of providing valid information about their status and experiences (e.g., Gurland et al., 1994), the operational methods for determining which persons and under what conditions have not been well-specified. As a result, one is left to make inferences about care from other data (e.g., the experience of cognitively intact residents) or to seek information from reliable informants.

Family members are often regarded as the most appropriate informant about quality issues for persons who are unable (or presumed unable) to provide direct information about their care. While there is evidence which suggests family members' views about what is most important may differ from that of the direct care recipients (e.g., DiBernardis and Gitlin, 1979; Bowers, 1996), there is also recognition of the validity of family views and opinions.

  • First, for persons with cognitive impairment, families have often provided care themselves and have knowledge about the challenges involved and what it takes to provide adequate care. Thus, they have a practical knowledge base for their opinions.

  • Second, they typically make key care decisions for relatives with cognitive impairment, including placement decisions. Thus, their views of what is high or low quality helps determine which assisted living facility is selected for someone with dementia.

  • Third, they are often in a position to observe both direct care provision and the consequences of care. Thus, they have relevant information.

  • Finally, most family members retain ties of affection and concern to the relative in a facility. Thus, they are typically regarded as a legitimate informant about the quality of the loved one's care.

Given these factors, we felt that family members' views about assisted living and quality as a valid starting point for developing improved quality measures.

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