Introduction: Dementia Care and Quality of Life in Assisted Living and Nursing Homes

Abstract

It is well recognized that the number of older adults who suffer from dementia has been increasing and will continue to do so over the coming years. In fact, nothing short of a three-fold rise in the number of people with Alzheimer’s disease is expected to occur between 2000 and 2050, and those with moderate or severe disease may number as many as 6.5 million midway through the century (Sloane et al., 2002). As the severity of dementia increases, families face challenging caregiving demands, and many find residential long-term care to be the best option for ongoing oversight. Historically, nursing homes have been the primary setting for the institutional care of older adults. During the last decade, however, their prominence in providing care for individuals who do not need medical services has been challenged by the growth of residential care/ assisted living (RC/AL)—facilities or discrete portions of facilities that are licensed by the states at a nonnursing home level of care, and provide room, board, 24-hour oversight, and assistance with activities of daily living. Recent estimates indicate that 23% to 42% of RC/AL residents have moderate or severe dementia, as do more than 50% of nursing home residents (Zimmerman et al., 2003). The number of RC/AL and nursing home beds exceeds 800,000 and 1.8 million, respectively (Institute on Medicine, 2001), suggesting that well more than 1 million individuals with dementia already reside in these settings. The matter of ‘‘quality’’ of life for individuals with dementia has been increasingly recognized during the last decade, and countless textbooks and manuals have been written to provide guidance on enhancing quality of life (see, for example, Fazio, Seman, & Stansell, 1999; Kovach, 1996; Volicer & Bloom-Charette, 1999). Efforts to define and measure this multidimensional component have progressed as well, and there now exist numerous valid and reliable instruments to do so (see, for example, Albert & Logsdon, 2000). What has been absent from the field is the study of quality of life for individuals with dementia in long-term care settings—both nursing homes and RC/AL facilities. Without this information, it has not been possible to evaluate components of care that relate to better quality of life. In this context, the work conducted by the Collaborative Studies of Long-Term Care (CSLTC) constitutes a significant contribution to what is known about quality of life and its correlates in long-term care. Another contribution of the work conducted by the CS-LTC is its basis in communitybased participatory research, which maximizes its utility for practice and policy. As detailed in the following ‘‘Perspectives of the Alzheimer’s Association,’’ the Association is using this information as the basis for its evidence-based consumer education, advocacy, and staff training efforts. Thus, the work presented in this issue is a necessary step toward the improvement of care and the quality of life for persons with dementia.