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Conference on assisted living reveals its evolution, dearth of research, and quality of life for residents

When assisted living (AL) facilities emerged in the late 1980s, many frail, elderly persons and their families were relieved that they had an alternative to nursing homes. Unlike nursing homes, AL facilities provide private rooms or apartments that don't compromise privacy. They also provide people with care, help with medications and incontinence, assistance with activities of daily living (such as bathing and dressing), as well as meals and housekeeping.

By 2000, variation in AL settings and programs was enormous, ranging from a long-term-care campus that includes a nursing home to a separately licensed wing of a nursing home, to a service offered within low-income housing complexes.

A working conference funded by the Agency for Healthcare Research and Quality, "Developing a Research Agenda to Shape and Improve Assisted Living," was held on June 12, 2004, to examine available research on AL and to identify future research needs in this area. The following papers, initially presented at the conference, were published in a special 2007 issue of The Gerontologist, Volume 47, and are briefly described here.

Wilson, K.B. "Historical evolution of assisted living in the United States, 1979 to the present," pp. 8-22.

The author of this paper traces the emergence of modern AL in the United States through four time periods. From 1979 to 1985, there was a growing distaste for the quality of life and care in nursing homes and more interest in residential, noninstitutional environments for the frail elderly.

The period from 1986 to 1993 was marked by interest in three types of assisted living: hospitality, housing, and health care, which eventually merged to a hybrid model of all three. The apartment-style housing of many AL facilities included 24-hour staffing to provide onsite personal and health-related services, such as help with dressing or bathing. These facilities also included community space (for example, libraries, beauty salons, and dining rooms) and activities to encourage social interaction. Services were individualized to each resident's needs and preferences, including medication administration, dementia care, incontinence management, and hands-on-assistance with all activities of daily living.

The period from 1994 to 2000 was a period of expansion for assisted living. However, by 2000, the uneven quality of consumer experiences brought criticism, and there were little data to inform decisionmakers about needed improvements. The author calls for better data about the costs and benefits of assisted living.

Hawes, C. and Phillips, C.D. "Defining quality in assisted living: Comparing apples, oranges, and broccoli," (AHRQ grant HS10315), pp. 40-50.

The dramatic growth in AL facilities was largely an unregulated market response to both demographic trends and consumer preferences. Despite this growth, researchers and policymakers still know relatively little about AL facilities and their residents. The researchers know even less about the quality of life and care in these facilities, note the authors of this paper. They reviewed a variety of studies on the quality of AL facilities, and searched for available quality measures to see if facilities were meeting their stated goals.

They concluded that any meaningful concept of quality must embrace several dimensions, including quality of care, quality of life, the physical environment, and resident rights. However, use of a multidimensional concept of quality is complicated by lack of consensus, confusion, and disagreement among consumers, providers, and regulators about the role of AL and other types of long-term care. This disagreement substantially confounds the tasks of comparing quality among AL settings and between AL and other types of long-term care.

Cutler, L.J. "Physical environments of assisted living: Research needs and challenges," pp. 68-82.

Research that examines the impact of the physical environment on quality of life and functioning among residents of AL facilities remains sparse, notes the author of this paper. Her review of studies focused on those that examined performance measures for physical environments, and environmental research findings themselves. Few studies dealt with resident behavioral outcomes linked to specific environments, such as the dining room or resident's room.

Experts often used focus groups to determine residents' environmental preferences. Yet, AL environmental research needs to be a process that takes into account the goals of the setting, the management, the demographics of the occupants (needs, disabilities, preferences, etc.), overall resident satisfaction, building performance, and occupants' use of the space, asserts the author. She calls for a research agenda that looks at how the older person uses the AL environment, and the outcome of the interaction between the older person and the AL environment.

Hernandez, M. and Newcomer, R. "Assisted living and special populations: What do we know about differences in use and potential access barriers?" (AHRQ grant T32 HS00086), pp. 110-117.

This review of 51 studies examined how State policies and industry development efforts, particularly those favoring apartment-type AL, affected access to supportive housing for minority, low-income, and rural residents. The findings raise concerns about declining or uneven access to AL by all these groups. Some studies suggested that low-income and minority persons were either less likely to use AL or received AL in settings with less space and amenities and/or lower quality scores. However, generalizations from national or multi-State studies to specific populations have certain limitations. Moreover, numerous topics remain unstudied, such as pricing of AL, the experience of choosing an AL facility, discriminatory admission and retention practices, and the role of resident preferences. The data on access to AL in rural areas were inconclusive. The authors call for studies to illuminate the AL experience of low-income, racial/ethnic minority, and rural populations.

Kane, R.A., Chan, J., and Kane, R.L. "Assisted living literature through May 2004: Taking stock," pp. 125-140.

This review of studies on AL from 1989 to May 2004 revealed that the AL research base is still underdeveloped, despite its rapid growth. The authors coded research methods used and topics examined in the studies. They also compared 38 studies with quantitative data that permitted summaries of resident characteristics, AL settings, and entry and move-out patterns. Studies showed no consensus in either the definition of AL or in the measures used to describe AL residents or their progress. Also, there was little standardization in the way variables were measured, making it difficult to compare studies.

The authors recommend that researchers pay more attention to measuring quality of life, overall social and psychological well-being, and perceived autonomy, choice, and control among AL residents. They note that lack of good nursing home outcomes on these dimensions prompted interest in AL in the first place.

Kane, R.A., Wilson, K.B., and Spector, W. "Developing a research agenda for assisted living," (AHRQ grant HS14027), pp. 141-154.

To develop a research agenda for AL, the authors reviewed Al literature and research-in-progress, and commissioned background papers critiquing knowledge on selected subtopics. Along with an advisory committee, they identified a comprehensive list of researchable questions of potential usefulness to consumers, providers, and/or policymakers, which they then rated based on their importance. Prior to a working conference of AL researchers, the authors identified five priority topics: consumer preferences, cost and financing, decisionmaking, developing quality measures, and resident outcomes. Conference discussions further underscored lack of standardized definitions and measures as barriers to building an empirically based AL literature.

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