Academic journal article Generations

How Do Family Members Define Quality in Assisted Living Facilities?

Academic journal article Generations

How Do Family Members Define Quality in Assisted Living Facilities?

Article excerpt

Assisted living facilities are increasingly being marketed as a source of long-term care for the elderly and disabled.

In the view of many, such facilities represent a promising new philosophy and model of long-term care, one that eliminates the invidious distinction between receiving care in one's hown home and in an "institution" (Kane and Wilson, 1993; Manard et al., 1991). Still, relatively little is known about the role and performance of assisted living facilities and the degree to which they represent a viable option for elders with dementia and their families. Moreover, there is considerable disagreement over whether and how to regulate what is largely viewed as a market-driven phenomenon (Kane and Wilson, 1993; Mollica and Snow, 1996). This debate has been largely framed by providers, including the early developers of assisted living. These advocates zealously assert the proposition that assisted living is a consumer-friendly model that will not benefit from traditional approaches to regulation, which tend to emphasize the importance of safety over the resident autonomy and choice that are the conceptual hallmarks of assisted living. Largely absent from this discourse, however, have been the voices of residents and their families. This paper is an attempt to help fill that void with a report on how families define quality in assisted living for residents with dementia. This, it seems to us, is a first step in determining how to best assure quality.

With funding from the Alzheimer's Association, we conducted six focus groups with family members of people with dementia who were living in or had recently been discharged from an assisted living facility. The goal in convening these groups was to allow family members to share their experiences and insights about quality in assisted living facilities and to then use this information to help define quality in assisted living from the consumer's perspective. The main points made by the families in these focus groups regarding the meaning of quality in assisted living are presented here.

STUDY METHODS

We used focus groups to explore this issue because they can provide insight into participants' experiences, perceptions, and attitudes and are also enormously effective in revealing what a particular population wants or might like to have.

We asked family members to help us define quality for two main reasons. First, they are often regarded as the most appropriate informants about quality issues for people who are unable (or presumed unable) to provide direct information about their care. Second, while some evidence suggests that family members' views may in fact differ from those of the care recipients (DiBemardis and Gitlin, I979), family members' views and opinions about the quality of care are nonetheless recognized as important and of legitimate concern.

CHARACTERISTICS OF THE PARTICIPANTS

We recruited family members whose relatives had been in an assisted living facility at least six months and who were involved in their family members' care by visiting regularly. The participants were mostly women, white, and children of the person living in an assisted living facility. The average monthly charge for the person's room and board was $2,930 per month, a rate probably lower than one might find in a study that did not include Oregon, which provides Medicaid funding for the "service" component of assisted living charges. We found that most elders with dementia and their families (75 percent) had some prior experience receiving long-term-care services, while nearly one-third of the elders with dementia had previously been in another assisted living facility. Sixty-one percent of the elders currently lived in a private room or apartment.

WHAT FAMILY MEMBERS SAID ABOUT QUALITY

Family members' comments about quality can be grouped into four major topic areas they identified as important. These are facility staffing, services, environmental features, and more general facility operational policies and practices. …

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