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Improving Practice Through Research In and About Assisted Living: Implications for a Research Agenda

Correspondence: Address correspondence to Rosalie A. Kane, PhD, Division of Health Policy & Management, School of Public Health, University of Minnesota, D-527 Mayo Building, MMC 197, 420 Delaware Street, SE, Minneapolis, MN 55455. E-mail: kanex002{at}umn.edu

	Genesis of the Special Issue

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This Special Issue focuses on generating knowledge about assisted living (AL) for older people—what has been learned so far, the credibility of that information, and future directions for research.

After a short development period in the 1990s, AL became an established long-term care option for seniors. The growth was fueled by the initiatives of entrepreneurs in both the for-profit and non-profit sectors and consumer preferences. Federal and state policymakers and planners, advocates, and researchers got involved later with their questions, hopes, and concerns. Although some states developed coverage for the service component of AL under Medicaid or Medicaid waivers, AL largely is a private-pay phenomenon, which limits the availability of relevant data for research.

Compared to research on nursing homes, AL research remains logistically and conceptually more difficult. Consider these issues:

• AL settings are not conveniently or consistently enumerated in most states.
  
• AL services may be the combined product of AL staff, employees of collaborating home care agencies, health workers employed by residents, and resident's family members. Inputs into AL are, thus, hard to quantify and compare.
  
• Residents in a single AL setting may vary in their needs, and could include those seeking only housing and convenient hotel and recreational services, those with light care needs, those with heavy care needs, and well spouses of the residents. In studies examining service processes and outcomes in AL, researchers will need to screen to identify the subjects for the study.
  
• Information about residents may be found in multiple records, such as a financial record, a care record, and a medication record, as well as in records of multiple agencies, including home health agencies and (for those funded by Medicaid waivers) the assessments and other records guiding the system.
  
• Little societal consensus can be found on the outcomes sought from AL either in terms of resident outcomes or system accomplishments. The individual goals may be expressed as a cumulative and unrealistic list of all functional and health outcomes expected for nursing home residents plus a high quality of life, a high degree of autonomy and individual control, and integration into the larger community. The system goals articulated by policy analysts, advocates, and government officials sometimes refer to that powerful but vague slogan, "aging in place," sometimes reference AL as an alternative to institutions, sometimes aim for high-quality care to meet needs, and sometimes allude to cost-effective use of resources.
  

By the year 2000, researchers were actively studying AL and experiencing some of these difficulties first-hand. The activities leading to this Special Issue began in the mid 1990s. A small but growing band of AL researchers began meeting at national conferences, participating together on panels, and seeking common conventions for their research. These discussions resulted in the formation of an Assisted Living Special Interest Group at The Gerontological Society of America, the formation of a Research Committee in the Assisted Living trade association, and a grant application to undertake a systematic review of the AL literature and to conduct a Working Conference on AL research. The conference, convened in June 2004, identified various strands of AL studies, and attempted to sharpen ways that future research could respond to the needs of providers, consumers, and policy-makers.

	Contents of the Special Issue

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Section 1 begins with articles that situate the phenomenon of AL in the panoply of health and social services for old people needing long-term care. Keren Brown Wilson's historical article illustrates the strands in AL derived from real estate and housing perspectives, hotel and hospitality perspectives, and health care perspectives. Robyn Stone and Susan Reinhard explore whether and how assisted living fits into a continuum or an array of service and housing options; their reflections have implications for the selection of comparison groups. Sheryl Zimmerman and Phillip Sloane review the way AL has been classified, which has implications for definitions to frame sample development or to define subgroups for analysis. Catherine Hawes and Charles Phillips discuss the outcomes of assisted living—the dependent variables, which present both conceptual and measurement difficulties.

Section 2 applies a systematic lens to particular topics. Joan Hyde, Rosa Perez, and Brent Forester describe a range of dementia care in AL, including dementia special care units and specialized AL communities solely for people with dementia, and the outcomes that might be measured. Lois Cutler zeroes in on the physical settings of AL, examining evidence about the use of space and how architectural designs shape the behavior and experiences of residents and staff. She suggests that the gold standard for environmental research, the mixed-method postoccupancy evaluation study, be applied to AL settings. Joseph Gaugler and Robert Kane address family roles and family outcomes; AL is meant to be permeable to family and community than nursing homes, and research should explore that contention. Robert Kane and John Mach discuss the failure to manage chronic illnesses adequately, which, in turn, can lead to complications, unnecessary hospitalizations, and discharge to other settings.

Mauro Hernandez and Robert Newcomer discuss AL with reference to minority populations of color, low-income groups, Medicaid recipients, and rural dwellers. Grappling with access issues is timely given the critique about a two-class AL system based on consumer resources, and the concern that nursing homes may largely become a repository for the poor, while others use AL. Finally, from a policy perspective, Mauro Hernandez presents a case study of Oregon to illustrate how public policy affects the relationships over time among supply, price, and quality of AL, residential care facilities, and adult foster homes in the state. Policies on quality and reimbursement influenced the rapid expansion and later stabilization of AL in Oregon compared to adult foster care and residential care facilities. Boom and bust cycles can, it seems, be stimulated by state policy.

Section 3 presents material derived directly from the 2004 Working Conference. Kane, Chan, and Kane review AL literature up to May 2004. This article shows that variation in definitions used in research is almost as great as variation in AL itself, and calls for some uniformity of definition in future studies. It also identifies two major research foci: research about AL and its general efficacy as a type of service, and research on different strategies for delivering services within AL. Kane, Wilson, and Spector describe the conference's prioritized research agenda for AL. Among the research topics identified as high priority were consumer preferences for AL, and consumer decision-makers; research that would guide capacity building in AL, including staff allocation; cost and financing topics; and transitions to and from AL.

	Continuing Research Challenges

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The AL literature of the last few years brings a larger stream of material, but also reminds us of the slow pace of research findings. A 4-state cooperative longitudinal study of residents in multiple types of AL and in nursing homes (Zimmerman, Sloane, & Eckert, 2001) has borne fruit in many publications, including a summary of outcomes (Zimmerman et al., 2005) and a collection of articles about the implications for persons with Alzheimer's disease that were gathered in another Special Issue of The Gerontologist (Schultz, 2005). The extant data set from a national probability sample of settings and residents dating to 1999 and 2000 has been used to examine Medicare expenditures for AL residents (Phillips, Holan, Sherman, Spector, & Hawes, 2005). The Veteran's Administration demonstration of time-limited posthospital AL was released in 2007, although the VA has no immediate plans to create a permanent new benefit (Hedrick et al., 2007). In 2001, the State of California contracted with almost a million dollars for a vendor to organize and study an Assisted Living Pilot Waiver Project authorized by the legislature to investigate the efficacy of AL as a Medi-Cal benefit. (The plan was to test two models: AL services added to HUD or public housing, and AL in purpose-build or adapted licensed Residential Care Facilities for the Elderly [RCFEs].) More than 6 years later, 400 clients were enrolled in 3 participating counties and 27 providers were participating; however, almost all the providers were RCFEs and the project was implemented so far in only one subsidized housing setting (NCB, 2007). Susan Reinhard, Heather Young, and others have conducted a series of studies to examine the nursing function in AL, including state policies for delegation of nursing function (Reinhard, Young, Kane, & Quinn, 2006), and practical studies of how medications are literally administered (McCormick et al., 2006; S. Reinhard et al., 2006; Sikma et al., 2006). With federal funding, a research team centered at Research Triangle International studied negotiated risk contracts and the reaction of key informants to this approach to systematizing resident risk-taking (Jenkens, O'Keeffe, Carder, & Wilson, 2006).

The AL field has not stood still waiting for research results, nor has it settled into orthodoxy. New models continue to emerge, including campus models, and specialized AL models (either freestanding or on campuses) for targeted populations—for example, people with single diagnoses such as multiple sclerosis, elderly people with underlying severe mental illnesses to which physical disabilities have been overlaid, people with severe hearing impairments (often coupled with severe visual impairments), and people with other specific disabilities or diagnoses. Innovation in physical designs and use of assistive technology are also moving apace. The Center for Excellence in AL (CEAL) became established as a consortium of consumer and provider organizations and had endeavored to identify best practices in the field—a difficult pursuit when the goals are still unclear and the research bases for calling any approach "best" are shaky. CEAL has the challenge of remaining abreast of developments in a rapidly moving field, which renders its quest for "best practice" difficult (see website at http://www.theceal.org/, accessed in September 2007).

AL still doesn't quite fit into the array of services for older people. Recent examples come to mind:

• Medicare Part D, the prescription drug provision begun in November 2005, did not consider residents in AL in the same way that it considered residents in nursing homes, subjecting nursing-home-certifiable AL residents to steep consumer payments that did not pertain in nursing homes.
  
• The Money Follows the Person Demonstration, a major federal initiative to help Medicaid recipients move out of nursing homes initially provided its more generous community benefits only if consumers leaving nursing homes moved to private homes or to "a community-based residential setting, in which no more than 4 unrelated individuals reside." This limitation was meant to avoid exchanging one institutional setting (the nursing home) for another. A later clarification held that the AL settings offer residents private apartments or lockable rooms along with leases or rental agreements regardless of how many residents have apartments in the setting, but very few AL settings meet that criterion.
  
• Whether AL does or should fall under Fair Housing rules is still a contentious issue and is under litigation in some states. AL programs have been criticized for discharging residents with high acuity, and for failing to do so.
  
• Partly stimulated by the alternative posed by AL, nursing homes are undergoing transformations to render them into settings that residents might consider their own homes with increasing provision of private occupancy, and full bathrooms, refrigerators, and even microwaves in residents' rooms. When such features appear even in the resident rooms of small-house nursing homes such as Green Houses® where the small resident population has access to a full kitchen a few feet outside the room (Kane, Lum, Cutler, Degenholtz, & Yu, 2007), this possible redundancy suggests some ambiguity about which model the nursing homes are pursuing—one that emulates the privacy and independence of apartment-style assisted living or the sense of community of the small family home style of AL. When in doubt, some nursing homes are hedging their bets by investing in both.
  
• Through the Medical House Call program in Washington, D.C., geriatricians and social workers provide all primary care to elderly people in their own homes and offer no office visits. The organization follows the patients when they are in hospitals, coordinates their specialty care, arranges for diagnostic work, and performs urgent care visits at home. It will not continue care for patients who move to nursing homes, but it will visit AL residents at home in the AL (see detail on the Medical House Call program at http://www.whcenter.org/documents/CenterConnections/CtrConn_Summer2005.pdf, visited in October 2007). Others of these emerging house call programs may make other decisions about AL.
  

These bullet points illustrate that AL is a fence-straddling phenomenon that fits awkwardly with existing services. AL throws into relief multiple societal tensions, including the conflict between safety and autonomy, between normal life and special services, and between health care and housing. No wonder regulators and advocates find AL troubling. On the one hand, they see a need to achieve clarity about the services, mission, and clientele in order to hold providers and payers accountable and to present clear information to consumers making choices. On the other hand, they appreciate the advantage of developing a service system with maximum capacity for providers to innovate and for consumers to live with a minimum of interference or prescriptive protections.

The unresolved definition of AL still bedevils researchers. Evidence-based pronouncements about who lives in AL, AL costs, how long people stay, and how they fare there are meaningless unless the universe of settings is clearly defined and the samples carefully drawn at the facility and resident level. Naturalistic studies that track older people as they use a variety of settings over time, including AL, are needed and require conventions on definition. That being said, the opportunities for studies—large and small, qualitative and quantitative, are boundless.

AL was, at least in part, meant to reform long-term care for older people by combining desirable housing where tenants (i.e., residents) could function independently while having service needs met. In some respects, those reforms were successful. The AL settings are out there, and some, though not all, reflect the "normality" of either apartment life or life in a small household. The example of and competition from AL helped change the physical plants for nursing homes toward greater privacy and jump-started the cultural change movement to transform nursing homes. The AL example may also have influenced home care—by allowing home care providers to see that those they serve in apartment-style ALs can function despite nursing-home level disabilities. In other respects, AL goals are less well met, or existing knowledge does not permit a judgment. For example, we still do not know how well a typical AL setting can or does accommodate the needs of consumers as their conditions deteriorate, or how many individuals with heavy-care needs can or do receive care simultaneously in an AL setting, or what arrangements assist in allowing ALs to generate the necessary service capacity for its current census.

The biggest challenge some AL leaders posed for themselves in AL's formative decade (roughly 1990–2000) was to deliver services with a new philosophy, one that viewed each consumer (or his/her agent) as the decisionmaker, and respected resident choices and preferences. Timing and nature of care routines in such idealized AL settings would be dictated by the resident's lifestyle rather than the reverse. Even if regulators in some states and some providers in all states want to keep a frail population out of AL, it is too late—the frail elderly population is already there. The issue is what that realization will do to AL. Disability activist Bob Kafka uses the term "nursing home on training wheels" for AL, reflecting the observation that many protective rules seem to be turning AL into "just another institution" (Kafka, 2007). The challenge is for providers to treat AL residents as they would any adult with a disability, a serious illness, or perhaps a terminal illness. In designing the settings and service parameters, the challenge is to base decisions on principles of adult development, basic human needs for privacy and control and a sense of identity at any age, and understandings of what comprises a good old age.

Research about and in AL should have benefits that extend beyond the service sector that was called AL at the end of the 20th century. It should help determine how to achieve goals of individualized care combined with a normal life for all LTC consumers wherever they live. The boundary-spanning nature of AL makes it difficult to distinguish AL services from nursing-home care at one end of the continuum and home-care at the other. The fine distinctions of definitions for settings may not matter as much as resolving what seem to be almost intractable problems for meeting the needs of frail elders in any care setting, be it hospitals, rehabilitation centers, nursing homes, ALs, or their own homes. Nowhere have we solved how to bring high quality mental health services to those with physical health problems, how to titrate medications for long-term care consumers who need skilled monitoring while they also need personal care and life assistance. Research directed at how frail older AL consumers with a variety of physical and/or cognitive disabilities can live out their lives meaningfully individually, with their families, and in community should help improve all types of long-term care.

	Footnotes

 
¹ Division of Health Policy & Management, School of Public Health, University of Minnesota, Minneapolis.

² The Jessie F. Richardson Foundation, Clackamas, Oregon.

	References

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• Hedrick, S., Guihan, M., Chapko, M., Manheim, L., Sullivan, J., & Thomas, M., et al (2007). Characteristics of Residents and Providers in the Assisted Living Pilot Program. The Gerontologist, 47, 365-377.[Abstract/Free Full Text]
• Jenkens, R., O'Keeffe, J., Carder, P., & Wilson, K. B., (2006). Study of Negotiated Risk Agreements in Assisted Living (Final Report submitted to OASPE, February 13, 2006). On web at http://aspe.hhs.gov/daltcp/reports/2006/negrisk.htm. Research Triangle, NC: RTI International.
• Kafka, B., (2007). Priority Components for Inclusion in an Integrated Managed Care System. CMS New Freedom Initiative Conference: Access to Community Living: Promoting Independence and Choice. Baltimore, Maryland, March 5, 2007.
• Kane, R. A., Lum, T., Cutler, L. J., Degenholtz, H. B., & Yu, A.-C., (2007). Resident Outcomes in Small-Group-Home Nursing Homes: A Longitudinal Evaluation of the Initial Green House Program. Journal of the American Geriatrics Society, 55, 832-839.[Medline]
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