The Gerontologist 47:125-140 (2007)
© 2007 The Gerontological Society of America
Assisted Living Literature Through May 2004: Taking Stock
Rosalie A. Kane, PhD1,
Jane Chan, PhD1 and
Robert L. Kane, MD1
Correspondence: Address correspondence to Rosalie A. Kane, Health Policy and Management, School of Public Health, University of Minnesota, D527 Mayo Building, 420 Delaware SE, MMC 197, Minneapolis, MN 55455. E-mail: kanx002{at}umn.edu
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Abstract
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Purpose: This article assesses the state of research on assisted living (AL) from 1989 to May 2004. Design and Methods: We undertook keyword searches for AL research and amplified these with searches of Web sites, conference proceedings, and follow-up inquiries. We annotated and coded the resultant items according to categories reflecting the research methods used and the topics studied. We did additional comparisons for 38 studies with quantitative data that permitted summarizing resident characteristics, settings, and entry and move-out patterns.&!emsp;Results: The 411 identified items ranged across a large number of topics. Qualitative studies outnumbered quantitative ones, and longitudinal studies were rare. We found little standardization in the way variables were measured, making cross-study comparisons difficult. As AL research has become more common, some items are directed at studying ways to proceed within AL as opposed to globally commenting on the worth of AL as a service sector.Implications: The research base for AL has grown rapidly but is still underdeveloped. We recommend using more consistent sets of standardized measures in AL studies and reporting analyses based on them. We also recommend fuller reporting of details on sampling, time frames, and measures in AL research.
Key Words: Structured literature review • Qualitative assisted living research • Quantitative assisted living research • Sampling • Research design
This article reviews and characterizes the nature of research and scholarly literature on assisted living (AL) with the intent of describing the state of research in AL from its inception to 2004. It also compares and synthesizes findings across multiple quantitative studies to address questions such as who lives in AL, how long they stay, where they go when they leave, what their costs are, and what outcomes they experience. The very process of attempting to aggregate descriptive information from multiple studies highlights both variation and ambiguity in how variables are operationally defined.
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Background
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AL, in its modern iteration, is a living setting where older people with substantial need for supportive services and care can receive that help while exercising maximal independence and control over their living routines, the nature of their private space, and what transpires there. AL settings differ from the residential hotels and senior living complexes that abound in America (especially in retirement areas) because the latter settings provide little more than meals and housekeeping and thus cannot readily accommodate people with high care needs. AL settings differ from nursing homes because they operate outside the federal regulations governing nursing homes and, in some cases, because of their emphasis on developing noninstitutional living settings, including private rooms or apartments and individualized scheduling.
One of the strongest models for AL aiming at both residential living and substantial care capacity is the apartment-style, nursing-home-alternative AL that became licensed in Oregon in 1990, or what Hawes and colleagues referred to as high-service, high-privacy AL (Hawes, Phillips, & Rose, 2000b). This form seems most likely to offer an alternative to the stultifying, "medicalized" life of a traditional nursing home because it marries the individualization of home care with the care levels of a nursing home (Kane, Illston, Kane, & Nyman, 1990). Small group homes (sometimes called adult foster homes) with heavy-duty services also claim to offer "normal" living in private homes. Oregon again led the nation in developing adult foster homes as a genuine nursing home alternative that was available on a widespread basis and appealed to middle-class as well state-supported consumers. When both adult foster care and AL became available in Oregon, foster care use decreased. Possibly foster care would be sought by clientele with a stronger preference for living in a house with a yard to an apartment (or by those who prefer bed and breakfasts to hotels, as Richard C. Ladd, former Director of the Oregon Senior and Disabled Services Division when both sectors were developed both in Oregon, suggested in many speeches during the 1980s and 1990s,). But the small scale of foster care suits rural areas. Some evidence has suggested that people with dementia do well in these small, familiar settings, and they sometimes relocate to foster care from AL as their dementia worsens (Kane, Kane, Illston, Nyman, & Finch, 1991; Nyman, Finch, Kane, Kane, & Illston, 1997; Stark, Kane, Kane, & Finch, 1995).
The development of AL has left policy makers, regulators, and consumer advocates playing catch up. AL facilities are now facts on the ground, and in some states they outnumber nursing homes. Their widespread use by people with substantial disabilities has led to concerns about whether AL facilities are serving as nursing homes without a license and need public policy attention. Yet uncertainty predominates about the actions warranted to preserve and promote the reforms in quality of life that AL was supposed to offer, while offering clarity to consumers and safeguards to the public. AL has been dubbed "the killer application," a computer term for a new program that throws all others into confusion (Smith, 2003, p. 67). Simply put, AL fails to mesh with existing health and human service patterns. States are urged to cover care in this new setting because consumers perceive it as desirable, and at the same time they are urged to vigorously ensure safety in the new setting. With little AL research for policy guidance, the temptation is thus to fall back on the familiar but not truly applicable ground of nursing home research. Yet, 15 years after the first AL facility was licensed in Oregon, a substantial amount of large-scale and small-scale research is available, emanating from many disciplines (e.g., nursing, social work, sociology, psychology, economics, marketing, and law) and using a wide range of quantitative and qualitative methods. It therefore seems timely to identify and examine this emerging information base about AL.
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Methods
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Search Process
The main search began with academic information sources, including the University of Minnesota library catalogs, Medline, and the Expanded Academic index. Keywords included the words sometimes used synonymously with AL (assisted living, residential care, domiciliary care, retirement home, rest home, adult foster home, group home, congregate living, continuing care retirement community [CCRC], and housing with services). We extended the search to the Web sites of some well-recognized aging services or long-term-care-related organizations, such as AARP (including its AgeLine Database), the Assisted Living Federation of America (ALFA), the American Association of Homes for the Aging, the National Center for Assisted Living, the American Association of Homes and Services for Aging, the Centers for Medicare & Medicaid Services, and many more. We obtained additional publications from the reference sections and bibliographies of initially selected studies. We scanned proceedings of The Gerontological Society of America to identify relevant abstracts and contacted the authors for citations. We invited researchers participating in the Assisted Living Interest Group of The Gerontological Society of America to send us findings from recently completed studies and descriptions of a, 1a, 2000bin-progress research. We also included material on Web sites, particularly the site of the Office of the Assistant Secretary for Planning and Evaluation, which has uploaded many of its substantial AL studies (e.g., Hawes, Phillips, & Rose, 2000a & 2000b; Hawes, Rose, & Phillips, 1999). Our systematic search included work done from 1989 until May 2004. We eliminated studies that were limited to clientele younger than age 65, such as programs exclusively for persons with mental retardation or developmental disability or with mental illness; such elimination occurred upon review of abstracts or, sometimes, upon review of the item itself. We also excluded items that mentioned AL as a passing comparison to nursing homes or other senior living options, those composed of AL business development proposals, and those that were purely descriptive news reports.
Classification and Review Process
This effort yielded for review 411 items (including articles, books, book chapters, reports, and a few manuscripts), all done in the 15-year period from 1989 to May 2004). We classified all items according to predetermined non-mutually-exclusive categories pertaining to both method and content. We coded data collection approaches to include qualitative primary data collection at the individual level (29 studies), qualitative primary data collection at the organizational level (10 studies), quantitative primary data collection at the individual level (29 studies), quantitative primary data collection at the organizational level (26 studies), secondary data analysis (15), abstraction of administrative data only (4 studies), and no data collection (for theoretical treatments or policy analyses). We coded the applicable studies as to cross-sectional design (156) versus longitudinal design (35), and by type of comparison group(s): none (91), nursing home residents (58), seniors living independently (24), seniors in other congregate housing arrangements (15), and residents of different types of AL (2). We noted the number of AL facilities and/or number of residents in each study and the states involved. Where we could gather this information, we noted that 81 of the items were about AL for seniors only and 32 about AL for mixed-age clientele. We also coded the items as to whether they sought to study AL as a phenomenon or whether they were studying an intervention or arrangement within AL: 137 of the entries tried to characterize AL overall, whereas 41 dealt with different kinds of approaches within AL settings. For 26 of the entries, the work concerned a single AL facility; and where this information was available, 51 concerned multiple AL facilities in a single state and 49 multiple AL facilities in multiple states. For empirical studies, we coded methods of data gathering: 45 studies used observational techniques, 80 used in-person or phone interviews, 87 used surveys completed by respondents, 50 drew from records and administrative databases as part of the study, 9 used focus groups, and 9 used extensive physical or psychological examinations of the residents. We also used topical codes, including for health and functional outcomes; social and psychological outcomes; physical environments; dementia; family; staffing practices; transitions to and from AL; policy; quality; and a residual "other" category, in which we entered some studies on mental health practices, medication management, and other miscellaneous topics. Using an Access database facilitated comparison by topic or by method, enabling us to extract, for example, all of the studies we had found on dementia care in AL or all those using qualitative methods such as grounded theory, participant observation, case studies, and focus groups. The majority of the items contained no empirical data or analysis but were theoretical or policy discussions—we classified these two types by topic and, when possible, AL characteristics. The Access database is available from the corresponding author upon request.
While assembling literature for review, we became aware that many studies in progress could substantially expand the data about AL over the next few years. Until now, primarily cross-sectional studies have been available, but longitudinal data is beginning to emerge, for example, from our own studies of the AL/home care connection (based on 600 residents of 60 apartment-style AL settings in 6 states; Kane, Cutler, & Chan, 2005) and the Collaborative Studies of Long-Term Care (that examined three types of AL and nursing facilities in four states; Zimmerman, Sloane, & Eckert, 2001). A rich vein of published material subsequently appeared based on the latter work, including an article summarizing general outcomes (Zimmerman, Sloane, Eckert, et al., 2005) and a special issue of The Gerontologist containing many specific articles about dementia care and outcomes in AL and nursing homes (Zimmerman, Sloane, Heck, Maslow, & Schulz, 2005), but these were not available at the time of the work reported here. The preliminary results from a study of a post-hospital AL benefit for clients of the U.S. Department of Veterans Affairs were under Congressional embargo at the time of this review (Hedrick & Guihan, 2005). Further state-wide studies were in the field in Florida (Street, Quadagno, & Burge, 2005) and New Jersey (Lucas et al., 2007), and a demonstration of two types of Medicaid AL was just beginning in California. On the more qualitative side, a multifaceted study of negotiated risk contracting in AL was underway (funded by the Office of the Assistant Secretary for Planning and Evaluation and conducted by RTI International (Jenkens, O'Keeffe, Carder, & Wilson, 2006); and Eckert and his team were studying many topics qualitatively, including the physician role in AL and transitions from AL. Hawes and colleagues, including Maine-based investigators, were studying quality of AL in Maine, using Minimum Data Set data and working on a prototype of quality management. Many ongoing smaller and more clinically focused investigations are currently underway to examine caregiving approaches, preventive approaches, staff training, and the like.
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General Impressions of the Literature
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Research in and about AL has expanded rapidly in the past decade. The field has evolved from a situation where very little research existed and literature reviews resorted to examining analogous material (e.g., about nursing homes) or to studying marketing documents (Lewin-ICF, 1992; Wylde & Zimmerman, 1999) to investigator-initiated research on AL and doctoral dissertations on the subject (Carder, 2002; Carder & Hernandez, 2004; Levin, 2001; Salmon, 2001). Many states have invested their own dollars in studying who uses AL in their states and the outcomes achieved, often in collaboration with local universities (Applebaum & Ritchey, 1992; Chapin & Dobbs-Kepper, 2001; Chapin, Dobbs-Kepper, & Oslund, 2001; Rudder, Smith, & Lieberman, 2001a, 2001b; Salmon, Hyer, Hedgecock, Zayac, & Engh, 2004). Researchers have conducted a handful of longitudinal studies (Frytak, Kane, Finch, Kane, & Maude-Griffin, 2001; Hawes, Phillips, & Rose, 2000a; Hedrick et al., 2003; Zimmerman, Sloane, Eckert, Buie, et al., 2001), one national and several involving multistate samples. Demonstration projects were underway, most notably a regional demonstration of contract AL in the U.S. Department of Veterans Affairs (Hedrick & Guihan, 2005) and an ambitious pilot on two forms of Medicaid-covered AL (purpose-built and AL grafted on low-income housing) mandated by the legislature in the State of California.
Many of the publications abstracted in our database were summaries of other studies or policy discussions based on available literature rather than studies with original data. Some researchers conducted secondary analyses of large-scale data sets; for example, the Medicare Current Beneficiary Survey has been a vehicle for learning something about the characteristics of those who use AL nationally (e.g., Spillman, Liu, & McGilliard, 2002). Another relatively large body of work has dealt with physical settings, though the writings typically have not identified precise aspects of setting or related them to outcomes for specific residents.
Qualitative studies were prevalent in the database and were well suited to the state of knowledge about AL and the general interest in getting rich information about the way some of the most important constructs in AL are applied. Constructs most often examined using grounded theory or ethnographic approaches include personal autonomy, choice, resident-centered assessment, homelike qualities of the environment, individuality, and aging in place. The names of the constructs varied somewhat (autonomy had many synonyms), and often the studies entailed few facilities and few residents. Sometimes, the construct was circumscribed by the policies of the state where it took place. For example, aging in place, however defined, is likely to mean something different in Oregon, where rules discourage premature eviction, than in Georgia or Florida, where the rules discourage people with high levels of disability to remain in AL settings. At either end of the state policy spectrum studies can usefully examine how residents and staff perceive and experience the construct aging in place, but readers must interpret findings according to state and local conditions.
Another spate of studies examined preferences, knowledge, and attitudes about AL among the general public and among those who might consider moving to AL. Closely akin to marketing studies, these studies described the strong preference held for private accommodations. Focus groups studies were also used to establish resident, staff, and public views related to aspects of AL. There have been very few attempts to look specifically at the nature and structure of satisfaction, well-being, or quality of life for AL residents, or to determine whether these should differ from the way satisfaction, well-being, and quality of life, are studied for seniors in general.
Some studies identified through the keyword assisted living merely utilized samples of residents living in AL. Investigators looking for convenience samples of older people with some health problems to study the aging experience have seemingly gravitated to AL. For example, a study of successful aging as perceived by seniors and how such perceived success was related to the Baltes theory of selective optimization with compensation took place with residents in several Rhode Island AL facilities (Rakowski, Clark, Miller, & Berg, 2003). Although the study was not motivated by learning about AL per se, the investigators included a qualitative component about the extent to which AL staff helped residents optimize their desired activities and reported lack of imagination and individualization in that regard. Other examples include interventions, such as tests of exercise programs, of drugs, or of particular equipment. As studies in AL rather than of AL, they sometimes incidentally illuminated AL practices.
We found an unexpected distinction between studies that attempted to draw conclusions about AL as a phenomenon (e.g., whether AL is good or bad, safe or unsafe, how AL compares to nursing homes or home care, whether one form of AL has superior outcomes to another) and studies that were done to examine alternative ways of providing services and achieving outcomes within particular types of AL. Within this latter group, we identified a few true experiments with randomization of residents to a treatment or control group within an AL facility, as well as quasi-experiments in which researchers randomized seemingly comparable AL settings to treatment or control interventions. For example, investigators have completed or undertaken randomized trials to study mental health interventions, falls prevention programs, or training programs for staff within AL.
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Synthesis of Data From Quantitative Studies
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We undertook more detailed analyses with selected quantitative studies to query the literature on broad questions about AL residents, AL settings, transitions into and out of AL, costs, and outcomes. We found 38 independent studies that we could use as the basis for one or more of these syntheses (Table 1). As the table shows, the studies concentrated in some geographic areas, which would then be overrepresented in any summary measures. Wherever possible, we eliminated duplicate studies that used the same sample. For some complex studies, we used different components for different parts of the analyses but reference them separately. The number of studies used for each question varied from 29 (for characteristics of residents) to 10 (for costs). When applicable, we calculated mean values and ranges for the results of these studies, and we weighted all mean values by the sample size of the studies so as not to allow a small sample study to influence the distributions. However, readers should interpret these means with caution because they reflect the locations studied, not the prevalence of AL. We did not select the research items with attention to the methodological rigor of each item, nor would performing any meta-analysis have been possible or appropriate. Very few of the individual studies and certainly none of the weighted means can be generalized to a population of AL facilities. We present the findings as suggestive only. As we describe the results, we also highlight some of the definitional and measurement difficulties they reveal.
Residents
As shown in Table 2, 29 studies addressed characteristics of AL residents. Most had data on age, and using 26 studies the weighted mean age was 83.7 and 77% of residents were women. Combining 15 studies, 97% of the residents were White and only 11% were currently married (i.e., with a living spouse). Using 10 studies, one third had some cognitive impairment, though the measures of cognition differed. Using 11 studies, the proportion receiving transfer payments such as Supplemental Security Income and/or general Medicaid eligibility was 30%. Only 4 studies attempted to measure residents' annual income, a notoriously difficult variable to measure accurately: The mean income for residents in these studies was $18,894. With these and other aggregate findings, we have no intent of suggesting that the values reflect any generalizable trends, given that the choices of settings to study and variables to use were idiosyncratic.
Providers and Services
Table 3 summarizes results from 13 studies that included descriptors of AL settings themselves. Weighting the information from 9 studies, 52.4% of AL facilities were for profit, and the mean capacity was 53.1 residents. Based on 6 studies, the average occupancy was 85%, possibly lowered by the fact that many AL facilities were in a startup phase at the time the studies reported here were conducted. From 5 studies, we could determine that 74.6% of the residents had private apartment units or private rooms and baths; however, 1 study (Gesell, 2001) indicated that the 6% of AL residents living with spouses were not counted in the analyses, and others studies did not explain how they handled spousal sharing. From 8 studies, we looked at whether any of 12 services were provided; the information came from lists included in the studies, and, unfortunately, we found little commonality in those lists (Table 4). In order of frequency, the services found were assistance with activities of daily living (ADLs), three meals per day, housekeeping services, preventive health care/wellness programs, medication administration/management/reminders, and emergency call systems (all found in more than 90% of the instrumental ADLs [IADLs] for which this was measured), transportation, incontinence care, social activities, nursing services, and 24-hr security (in 80%–88%) and rehabilitation (available in 70% of the settings). Only 2 studies, albeit with large samples of facilities, estimated the hours of licensed nurse care per resident per day (M = 0.28) and of direct care aide hours per resident per day (M = 1.8). Three of the studies attempted to calculate overall staff turnover rate. Aggregated across these 3 studies, the weighted average was 26.6%; however, in the single study reporting standard deviation (Phillips, Hawes, Spry, & Rose, 2000), the standard deviation was 64.4%.
Functional Status
A total of (16 studies presented findings on AL residents' overall functional status and/or health status (Table 5). Similar information derived from 7 studies is presented for IADL functions in Table 6; IADL assistance was infrequently reported with medication assistance reported in all 7 studies, housekeeping reported in 5 studies, money management and telephoning assistance reported in four studies, and help with laundry, transportation, and shopping reported in 3 or fewer studies. Based on 8 studies, the average number of ADL impairments was 2.3. Three studies described the percentage of persons with three or more ADL impairments; the weighted average for these was 26.9%. Figure 1 shows the aggregate data for seven ADL measures: bathing (from 14 studies); dressing (from 13 studies); eating, toileting, transferring, and bathing (from 13 studies); mobility (from 9 studies); and personal hygiene (from 5 studies). Almost 59% of residents had ADL needs related to bathing, 55% related to personal hygiene, and 50% related to dressing. More than one third had needs related to ADL and IADL for each of the other functions except for eating, for which the weighted average needing assistance was 20.7%. These needs were sometimes based on the resident's capacity to perform the function and sometimes on assistance received; when based on assistance received, we included partial assistance. Unfortunately, the approach to measuring and summarizing functional dependence varied by study. Additionally, from studies measuring these variables, 59% of residents used a wheelchair or walker, 61% needed incontinence care, and 3.1% were bedfast, but these findings were based on 5, 3, and only 2 studies, respectively.
Figure 2 shows the average percentage of residents who received assistance with selected IADLs. Housekeeping was highest with 90%, though this may have been a result of housekeeping being a routine service rather than a measure of capacity. A total of 82% received help with shopping, 80% with personal laundry, and 77% with medications. (It is unclear how these studies handled people who had no prescription medications, and thus we cannot say that 23% medicated independently.) Notably, 60% used a wheelchair and/or walker. As with the data on ADLs, we cannot properly interpret or aggregate these IADL service data with confidence because of the mixtures of metrics and the lack of clarity over whether need or services received were being measured.
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Figure 2. Assisted living facility residents receiving assistance with instrumental activities of daily living. Adm = administration; mgt = management
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Resident Transitions to and From AL
Altogether 15 studies provided some information about transitions to (6 studies) or from (12 studies) AL, or both (4 studies). Figure 3 shows where the AL residents came from: 60% came from their own homes, but a rather large number (14%) came from a different AL setting. Unfortunately, some studies specified that they included adult foster care and residential care facilities as "other AL," some specified those settings separately, and some were silent on how they defined "other AL." The 6% entering from hospitals is an ambiguous figure; Kane and colleagues (2005) had no admissions from hospitals, because that study used the convention of counting the person as living in the setting from which they were admitted to the hospital if that was known. Common practices are needed for treating the variable previous residence, and on how to treat a hospital stay in that regard. Arguably direct entry to an AL facility from a hospital is worth noting on its own, but it begs the question of whether that individual lived at home, in a nursing home, or in another AL setting before the hospitalization.
Figure 4 shows where the residents went after they left AL. Based on all 12 studies, weighted for the number of residents in the studies, 32.2% of residents died in the AL facility and 5.1% in what was usually a short hospitalization from AL, 36.5% went to a nursing home, and 16.6% to another AL or residential care facility (with the same issues on defining other AL as described in the preceding paragraph for the locations prior to move in). Only 3.5% went to their own homes in the community, though the residual "other" category often included residents who were admitted to independent living congregate settings, which some authors included with private homes in the community. As with data on where residents came from, examining data on where they went reveals the need for some common definitions of what constitutes one's own home and how independent living within a retirement complex or moving in with a relative is counted. Some authors commented that they made an effort to identify those who died after a short hospitalization and counted them as deaths in AL rather than discharges to the hospital. The ability to get this kind of precision depends on whether the method includes direct interviews with AL facilities about their discharged residents and whether the AL facilities themselves have the capacity to know whether those residents died in the hospital. Using 6 studies, we determined an average length of stay of 32.8 months (SD = 21.8–42).
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Figure 4. Place to which residents moved after leaving assisted living facility (ALF) in 12 studies (Assisted Living Federation of America, 2000; Chapin et al., 2001; Damron-Rodriguez et al., 2001; Hawes et al., 2003; Hedrick et al., 2003; Kane, 2004; Kane et al., 2005; Kane & Wilson, 1993; Ostwald et al., 1993; Phillips et al., 2000; Pruchno & Rose, 2000; Salmon et al., 2004). The Others category includes both infrequently used categories mentioned in the original studies and undifferentiated Other categories from those studies
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Finally, 8 studies tried to characterize the reasons people left AL. The most commonly cited reason was need for a higher level of care. Other reasons, such as behavior problems, were likely a subset of a judgment about the need for a higher level of care, although small family homes sometimes can cope with so-called behavior problems better than AL facilities. Researchers also cited financial reasons, death of a spouse (allowing the less impaired spouse to move to the community), and dissatisfaction with the AL facility. Some residents moved because their care needs decreased, and some moved to a location in another community to be near a relative. Interpretation of findings would be easier if a common metric were developed. Furthermore, in some instances the reasons for leaving were given by providers and in some by consumers, and inevitably these groups might understand the same reasons differently. It would be of interest to understand the reasons for the same move-out from both perspectives.
Price
Initially we had intended to array information about the price of AL from 10 studies that included that information; from those studies the mean of the average charges was $1,776 per month, with a range from $1,606 to $2,379. We concluded, however, that we could not compare the studies given variations in price by region and variations in the time period of the study. Moreover, we did not identify any studies in the period under review that provided separate information on the price of the room (or the room and board) as opposed to the price of the services. In the study of 600 residents of 60 apartment-style AL settings (Kane et al., 2005), researchers made an effort to collect the information to separate housing and services prices, but they could not gather that information uniformly. Some facilities separated the pricing only for residents receiving care under Medicaid. One study (ALFA, 2000), which was based on reported information from 373 AL properties, provided a list of items for which the AL facility charged extra and that, therefore, did not figure in the mean ($2,225) or the median ($1,800) prices calculated for the programs in the study. The percentage of facilities charging extra for selected services were as follows: telephone (60.5%), incontinence care (55.4%), ADL assistance (43.3%), rehabilitation (42.8%), nursing services (39.7%), transportation (37.2%), and weekly health check-ups (23.5%). Since that time, multiple ways of pricing services have been identified (e.g., rate tiers or levels, à la carte pricing, service-unit pricing), and there is greater awareness of the complexity of pricing when spouses share the same apartment unit. Once again, the field would benefit by a common rubric for reporting prices paid, and the categories that would be meaningful. For example, a decision is needed as to whether meals should be part of the service price or the basic rental; in most but not all AL facilities, the meals, light housekeeping, and some laundry is included in the base price.
Outcomes
We identified 14 studies that contained information about change over time and addressed one or more AL outcomes. The focus of the studies (i.e., on AL itself or on interventions within AL, the measures used and the time dimension for follow-up were so widely disparate, that aggregating the studies and making weighted averages was impractical and misleading. The outcomes measured ranged from 9 measuring change in functional abilities, which showed a range of positive and negative effects, 3 for each of satisfaction, transfer to nursing home, morbidity rates, and depression, 2 studies each examining mortality rates and hospitalization rates, and a single study looking at changes in each of psychological well-being, number of medications used per resident, costs of medical care, and costs under Medicaid.
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Discussion
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This article has described published and emerging literature on AL over a 15-year period during the formative time of modern AL in the United States. The study has limitations. Far from applying the stringent inclusion criteria that have become customary for summaries of research evidence (Sackett, 1997; Stroup et al., 2000), we were inclusive, applied no exclusions based on design, and incorporated preliminary or final reports as well as published literature. This strategy served our purpose of identifying work on AL but also resulted in an assemblage of studies of varying and at times unknown quality. Also, although we attempted to be comprehensive in our search strategy, we undoubtedly missed some items. Furthermore, our classifications inevitably entailed judgment calls, and our classification of the nature of the literature by method and topic resulted in many empty cells for which the information simply was not included in the original articles. In our summary reports of findings on key questions that describe residents, settings, services, and transitions from a smaller subset of studies, we utilized aggregate means weighted by the size of the study samples, but we recognize that we cannot say these averaged findings represent AL. Readers must view weighted averages with caution. Not only is it often difficult to find common parameters, but the summaries are overrepresented with some authors and locations. Finally, in a fast-moving field such as AL, the different time periods of the various data collections add another possible confounding variable.
This review suggests that there is a basis for examining AL empirically, but it is difficult. Although researchers have recently given substantial scholarly attention to AL, much of the work done to date does not lend itself to easy comparisons and systematic knowledge development. This synthesis of multiple studies offers an example of an approach from which investigators may learn something about AL. The studies show rather consistent results, especially in terms of resident characteristics.
The literature reveals no consensus in either the definition of AL or in the measures used to describe the clients or their progress, and indeed the theoretical and policy literature reviewed suggest continuing debate about the very essence of AL. In the review, we sought to determine the extent to which commonalities appeared in measurement and data collection strategies, and we found great variation. Investigators often created categories suited to their own study. To take one example, those studying apartment-type AL only tended to distinguish adult day care and residential care facilities from other AL apartments as the living situation before move in or after move out, whereas studies with samples that incorporated apartments, foster homes, and residential care as AL used "other AL" to mean all three settings. Often ADL and IADL capability was confounded by definition of receipt of help for a particular function; investigators wishing to make comparisons with information derived from the nursing home Minimum Data Set have little choice but to use the functional definitions based on receipt of assistance, whereas those who have the luxury of collecting primary data in both nursing homes and AL facilities have more choice. The interpretative difficulties occur when an investigator makes an effort to answer a specific question by consulting multiple studies.
We see merit in achieving greater standardization in describing the elements of AL, its services, and its outcomes. Lessons from the literature as a whole would be enhanced by common conventions about what should routinely be reported related to AL facilities (e.g., perhaps size, auspices, state of location) and what should routinely be reported about the sampling frames for selecting AL facilities and for selecting residents in AL facilities. Such description is needed in qualitative as well as quantitative studies. Otherwise, readers may draw conclusions about phenomena often studied qualitatively (e.g., aging in place) that are a result of the setting chosen for study or the policies of the state rather than the nature of AL. Increased standardization and at least disclosure are particularly important to make maximum sense of outcome studies.
Especially because AL has morphed into so many different variants, more studies are needed to compare the effects of different forms of AL. A stronger theoretical base is needed to justify why certain variations might be expected to achieve different results. More attention to case mix is needed, in terms of either adjusting for variations or targeting certain forms of AL to specific subgroups. Selection effects confound efforts to compare AL facilities and nursing homes. In the Oregon outcome study (Frytak et al., 2001) this difficulty was pronounced because the prevalence of frailty in nursing homes was so great because of Oregon's strong investment in a range of non-nursing-home settings; consequently, the authors adjusted with an instrumental variable based on supply of AL in the county, but such a strategy could be impractical for large-scale national studies.
Many studies simply use AL as a setting from which to recruit participants to study an intervention that does not directly reflect AL. But within AL, it would be possible to increase studies of new ways of achieving outcomes that would shed light on different ways to organize care, such as alternative ways of managing medications, delivering primary health care, delivering end-of-life care, recruiting and training staff to achieve greater attention to individual preferences, or managing dementia care so as to meet the needs of those with and without dementia. Some such interventions lend themselves to randomized controlled trials, whereas others entail systemic change, and the strongest designs are likely to be quasi-experimental.
The next generation of AL research seems about to emerge. More and better studies and better reported studies will help foster understanding of how AL can contribute to the spectrum of long-term care. Regarding outcome studies, researchers should pay more attention to measuring quality of life; overall social and psychological well-being; and perceived autonomy, choice, and control. The lack of good outcomes on these dimensions in nursing homes was the reason why the intellectual progenitors of AL established it in the first place, and why it grew so fast and became so popular with consumers.
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Footnotes
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An earlier version of this article was prepared for a working conference funded by the Agency for Healthcare Research and Quality (AHRQ), Developing a Research Agenda to Shape and Improve Assisted Living, Arlington, Virginia, June 12, 2004. The literature review reported here was also funded by AHRQ with additional support from the University of Minnesota Chair in Long-Term Care and Aging. Jane Chan is now with U.S. West Financial, Eden Prairie, Minnesota. 
1 Division of Health Policy and Management, School of Public Health, University of Minnesota, Minneapolis.
Decision Editor: Susan L. Hughes, DSW
Received for publication June 18, 2006.
Accepted for publication February 7, 2007.
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