The term "assisted living" denotes a type of residential long-term care setting known by nearly 30 different names (Hawes, Mor, Wildfire, et al., 1995; Hawes, Rose, and Philips, 1999; InterRAI, 2005). Assisted living settings offer various levels and combinations of services, care, and privacy. This wide array of assisted living terminology and structure is accompanied by similar variations in definitions. In a report to the United States Senate Special Committee on Aging, the Assisted Living Workgroup (2003) noted that:
Experts consider that the key tenets of assisted living include 24-hour service and oversight, services that meet scheduled and unscheduled needs, and care/services that promote independence, with an emphasis on dignity, autonomy, choice, privacy, and home-like environment (Hawes, Rose, and Phillips, 1999).
The popularity of assisted living increased considerably in the early 1990s, and by 1996, it accounted for over half of all senior housing construction in the United States (Applebaum, Straker, and Geron, 2000). The first licensure requirements for assisted living were developed in 1989 in Oregon (Hawes, Rose, and Phillips, 1999). While the lack of a standard definition of assisted living makes it difficult to measure the size of the market precisely, the most widely accepted definition provides a count of approximately 36,000 assisted living residences in the United States serving more than 900,000 people (GAO, 2004) and fueling a multi-billion dollar industry. The MetLife Market Survey of Assisted Living Costs (2003) cites a 48 percent increase in the number of assisted living facilities in the United States between 1998 and 2002, showing continued popularity of this type of housing. However, in recent years the top assisted living chains have faced an oversupply of beds and lower occupancy rates (Vickery, 2004). In addition, the growth rate in the number of licensed facilities was flat between 2002 and 2004 (Mollica and Johnson-Lamarche, 2005). Even so, a study done in 1998 documented an undersupply of facilities in rural areas, where typically fewer services are offered (Hawes, Phillips, Holan, et al., 2005).
For the most part, expenses associated with assisted living services are not covered by insurance and must be paid for privately by individuals and their families (GAO, 1999). While monthly charges vary by facility and location, the Met Life Market Survey (2003) estimates an average monthly cost for 2004 of $2,524, representing a $145 increase over the 2003 estimate. Extra fees are often assessed for services such as medication management, dementia care, laundry, and transportation (Hawes, Phillips, and Rose, 2000b).
As of 2004, a total of 41 States reimbursed for assisted living services through the Medicaid Home and Community Based Waiver (Mollica and Johnson-Lamarche, 2005). The purpose of the Medicaid waiver is to help those who need long-term care services to remain in a community setting, such as an assisted living facility. This program pays for services that are typically covered in a nursing home, such as nutritionist services, emergency care, and transportation. The number of beneficiaries receiving Medicaid funds for assisted living grew more slowly from 2002 to 2004, from 102,000 to approximately 121,000 (Mollica and Johnson-Lamarche, 2005). Although this Medicaid waiver option exists, assisted living housing remains largely unaffordable for elderly individuals of moderate or low income (Hawes, Rose, and Phillips, 1999).
The National Center for Assisted Living (NCAL) depicts assisted living (go to Figure) on a continuum of long-term care as a step between total independent living and skilled nursing home care (Kraditor, Dollard, Hodlewsky, et al., 2001). In contrast to a nursing home, which is based largely on a medical model, assisted living is considered a social model that combines personal services with health care in a home-like setting (Marsden, 2001; Thayer, 2003).
Source: Kraditor K, Dollard KJ, Hodlesky R, et al. Facts and Trends: The Assisted living Sourcebook. Washington, DC: National Center for Assisted Living; 2001. Used with permission.
In recent years, there has been a trend toward higher acuity levels in assisted living facilities. Market changes that have affected nursing homes, such as changes in entitlement systems and managed care policies, have forced higher levels of acuity, which in turn filters down to assisted living facilities (Moore, 2001). Despite the differences between assisted living and nursing home care—including regulatory environment, staffing, and underlying philosophy (Franks, 2004)—examining instruments and tools used to measure nursing home resident perspectives of care and satisfaction (which are included in this report) can help inform the development of tools for consumer choice in assisted living.
The typical assisted living resident is a white female, 80+ years old, who is mobile but requires assistance with some activities of daily living (ADLs) (ALFA, 2005; NCAL, 2005). Generally, residents of assisted living facilities are less impaired than those in nursing home facilities, who typically require more assistance with ADLs and need daily nursing care or monitoring (Applebaum, Straker, and Geron, 2000; Hawes, Phillips, and Rose, 2000b).
The majority of assisted living residents move directly from their homes or from other settings of less formal care, such as retirement apartments or other assisted living settings, while relatively few are admitted directly after a hospital stay (Reinardy and Kane, 2003). The reported average length of stay for assisted living is 1.5 to 3 years (Golant, 2004). Residents typically move from assisted living to a higher level of care such as a nursing home (Phillips, Munoz, Sherman, et al., 2003), although some assisted living facilities accommodate a range of residents' needs, including services typically delivered in a nursing home.
Assisted living residents have better perceived health and lower prevalence of chronic diseases than do nursing home residents; however, most residents need help with medications (Wilson, 2003). At the same time, they have some significant health concerns. Moderate to severe cognitive impairment, usually associated with Alzheimer's disease, is the most common serious chronic condition and affects between one-quarter and one-third of the resident population (Hawes, Phillips, and Rose, 2000b; Sloane, Zimmerman, Hanson, et al., 2003; Spillman, Liu, and McGilliard, 2002). However, some research suggests that the proportion of assisted living residents with cognitive impairment may be higher, since in one study a significant percentage of assisted living residents with cognitive impairment were underdiagnosed (Magsi and Malloy, 2005; Rosenblatt, Samus, Steele, et al., 2004). In a four-State study of more than 2,000 residents in nearly 200 assisted living facilities, 13 percent were classified as depressed (Watson, Garrett, Sloane, et al., 2003). Assisted living residents use hospital care frequently; 32 percent are admitted for inpatient hospitalization, and 24 percent use emergency services annually (Hawes, Phillips, and Rose, 2000a.
Despite the significant variation in terminology and definitions, assisted living facilities are thought to adhere to a universal philosophy that emphasizes choice, dignity, autonomy, independence, privacy, and other "normal life" characteristics (Reinardy and Kane, 2003). In theory, it is this shared notion of a consumer-focused philosophy that sets assisted living apart from other residential long-term care settings (Utz, 2003). In the late 1990s, the Assisted Living Quality Coalition maintained that "assisted living, more than any other type of long-term care service, must be driven by a philosophy that emphasizes personal dignity, autonomy, independence, and privacy in the least restrictive environment" (Hawes, Rose and Phillips, 1999).2
In reality, despite the philosophy of assisted living and the adherence of facilities to the words, there is tremendous diversity among places known as assisted living. A national study completed in the late 1990s found that nearly four out of five ALFs (57%) offered relatively low services and low privacy environments (Hawes, Phillips, Rose, et al., 2003). Another study conducted in four States also found significant variability among facilities (Zimmerman, Gruber-Baldini, Sloane, et al., 2003). Indeed, this variability among facilities in services and accommodations grew as some States reclassified all residential care facilities as "assisted living" (Mollica, 2002). This variability among places known as assisted living makes improved consumer education and information systems even more critical to assist potential residents and their families in selecting a facility that meets their needs and preferences.
In theory, the basic tenet of creating a home-like environment with a focus on autonomy and individuality (Hawes, Rose, and Phillips, 1999) is designed to provide care based on a social model rather than a medical model. Even the vocabulary used in assisted living reinforces the distinction between a home-like setting and an institutional setting. The marketing terms used by the assisted living industry aim to evoke choice and independence. For example, assisted living terms for admission and discharge are move-in/move-out; their location within the facility may not be a bed or a room but could be an apartment or unit (Carder, 2002). Again, however, the majority of residents live in rooms, not apartments (Hawes, Phillips, and Rose, 2000b; Hawes, Phillips, Rose, et al., 2003).
An additional concept that is frequently associated with the philosophy of assisted living is that of aging in place. Bernard, Zimmerman, and Eckert (2001) define aging in place as "the phenomenon of growing older within a specific environmental setting" (p. 224). A primary concern for many seniors is whether they must move from one facility to another as they age. It is often difficult for residents to understand what services are provided to match their current needs, as well as how these services will change to adapt to their needs as they age. According to the GAO report (1999), consumers may be provided with marketing materials that promote an aging-in-place philosophy, but they often are not given a true picture of the facility's ability (e.g., organizational policies and procedures) to accommodate to residents' changing needs. Frequently cited problems from the GAO report (1999) include issues related to admissions and discharge: less than one-third of assisted living residents were informed about retention and discharge policies (Hawes, Phillips, and Rose, 2000a. Some States, such as Oregon, regulate what has to be disclosed to the residents of assisted living, such as admission, discharge, and transfer criteria and procedures (NCAL, 2004). Only 20 States require facilities to include information about their criteria for admission, discharge, and transfer (Mollica and Johnson-Lamarche, 2005). For a detailed listing of information that states are required to provide in residency agreements, see State Residential Care and Assisted Living Policy: 2004 (Mollica and Johnson-Lamarche, 2005).
This considerable variation in residents' ability to age in place in an assisted living facility is the result of several factors (Bernard, Zimmerman, and Eckert (2001)). At the community level, the influencing factors include State regulations (Chapin and Dobbs-Kepper, 2001). At the facility level, factors such as the size and accessibility of the facility influence aging in place, since not all facilities can accommodate wheelchairs. Also, the presence of a registered nurse on staff reduces the likelihood of moving to a nursing home (Hawes, Phillips, and Rose, 2000b; Phillips, Munoz, Sherman, et al., 2003). At the individual level, health and socioeconomic status are factors that can determine whether an individual can age in place (Zimmerman, Sloan, Eckert, et al., 2001). In general, once a resident requires assistance with transfers (e.g., from bed to chair) or develops significant cognitive impairment or behavioral problems, the ability to reside in most assisted living facilities is greatly reduced. Under these conditions, most facility policies specify discharge (Hawes, Phillips, and Rose, 2000b; Hawes, Phillips, Rose, et al., 2003).
Having a negotiated risk agreement or liability waiver in place may help a resident remain in an assisted living facility. These contracts allow the resident to remain in the facility by balancing the residents' values of autonomy and control with the provider's protection from risk (Kapp and Wilson, 1995). Although they are included in some States' rules, these liability waivers are controversial from both the legal and the quality of care perspectives (Carlson, 2003; Kissam, Gifford, Mor, and Patry et al., 2003). Fifteen States and the District of Columbia have regulations that allow for the negotiation of such contracts (Mollica and Johnson-Lamarche, 2005). Although States use different terms for the agreement, there are common features in the requirements, one of which is for the contract to be written and signed by the resident (or, in some States, a surrogate or sponsor) and the appropriate facility administrator (Mollica and Johnson-Lamarche, 2005). According to Mollica and Johnson-Lamarche, (2005, "State regulations typically require that the agreement describe the possible consequences of the resident's actions, the specific concerns of the facility, and options that will both minimize the risk and respect resident's choices. They also generally require documentation of the negotiation process, and agreement or lack thereof, and the decision reached by the resident after consideration of the facility's concerns" (p.1-17). Among the States that do allow for these agreements, State licensing officials reported that the negotiated risk process is not widely used (Mollica and Johnson-Lamarche, 2005).
These philosophical goals held by many assisted living pioneers are not necessarily embraced by all facilities that self-define themselves as assisted living facilities, nor are all these goals necessarily being met by all facilities in practice. Therefore, it is important to be able to go beyond the rhetoric and to measure how well facilities meet each of these goals, which would help consumers better understand and evaluate the quality of services that the facilities provide.
Most assisted living residences are freestanding facilities, but they can also exist within continuing care retirement communities, independent living complexes, or nursing homes (Utz, 2003). Living spaces can be individual rooms, apartments, or shared quarters, with some States specifying specific square footage and number of bathrooms per a certain number of residents (NCAL, 2004). Hawes, Rose, and Phillips (1999) note that the average assisted living facility has 53 beds with 84 percent occupancy. Facilities have been grouped by the level of privacy offered (high and low/minimal), with high privacy meaning that 80 to 100 percent of the units are private, which represents approximately 73 percent of all resident units (Hawes, Rose, and Phillips, 1999; Hawes, Phillips, and Rose, 2000a).3
Large for-profit facilities make up only a segment of the market; most assisted living facilities are smaller, independent for-profit and not-for-profit organizations (Newcomer and Maynard, 2002). Some facilities are specialized, such as those that serve Alzheimer's residents.
Assisted living facilities increasingly are viewed as an optimal setting for Alzheimer's care. According to ALFA, nearly 24 percent of facilities have designated Alzheimer's units. There are two models for Alzheimer's units, a residential social model of care and a medical model. The residential social model is appropriate for those residents in early stage dementia, who are in basically good physical health and need low to moderate assistance with ADLs (Moore, 2001). For those Alzheimer's patients who have more advanced disease and complex health problems, a medical model is more appropriate. The aim of these specialized units is to adapt to the residents' changing mental and physical needs, maximize orientation and awareness, including opportunities for socialization, and importantly, ensure a safe and secure environment (Moore, 2001). It is important to note, however, that half of the facilities' stated discharge criteria stipulate moderate to severe cognitive impairment, and the vast majority would not accept or retain residents with any behavioral symptoms, such as wandering (Hawes, Rose, and Phillips, 1999 and Hawes, Rose, Phillips, et al., 2003).
Assisted living facilities vary in the level of services they provide. States generally specify a minimum level of services that must be provided, but assisted living facilities determine the range of services offered, from those that are extremely limited (offer one meal a day) to comprehensive services that can accommodate a high acuity level (skilled nursing care). Hawes, Phillips, Rose, et al., (2003) differentiated assisted living facilities by the number and type of services provided. In that definition, a high service facility provided 24-hour oversight, housekeeping, at least two meals a day, and personal assistance with at least two of the following: medications, bathing, or dressing. In addition, the facility must have at least one full-time registered nurse (RN) on staff and nursing services provided by staff who are facility employees. However, most (65%) of the places known as assisted living did not meet the criteria of a full-time RN on staff and provision of nursing care or monitoring as needed with staff (Hawes, Phillips, Rose, et al., 2003).
According to the Assisted Living Working Group's (ALWG, 2003) definition of assisted living, the range of services to be offered or coordinated, according to State law requirements and regulation, includes the following:
As a core principle, the ALWG notes that facilities should "provide resident-centered services with an emphasis on the particular needs of the individual and his/her choice of lifestyle incorporating creativity, variety, and innovation" (ALWG, 2003, p.20).
A fundamental component of assisted living care is 24-hour-awake staff to provide oversight and meet scheduled and unscheduled needs. For example, according to a GAO report (2004), consumers need to know if a facility provides full 24-hour service to address care needs such as administering medication in contrast to a facility whose staff is available at night only to deal with emergencies. More than half of assisted living facilities surveyed in 1999 had either a full- or part-time RN on staff, and nearly three-quarters had an RN or licensed practical or vocational nurse (LPN/LVN). Approximately 20 percent did not provide any licensed staff (Hawes, Rose, and Phillips, 1999). A national survey cited the median staffing level in assisted living facilities as 14 residents for each caregiver and noted that most staff who provided personal care assistance were also responsible for other tasks, such as meal preparation, housekeeping, and laundry (Hawes, Phillips, and Rose, 2000b). Some States regulate staff-to-resident ratios, as well as the type of staff education and training required (NCAL, 2004).4
Supportive and personal services typically offered in assisted living facilities include help with bathing and dressing; more than 90 percent of assisted living facilities provide assistance for these early-loss activities of daily living (Hawes, Rose, and Phillips, 1999). Assisted living facilities also provide other supportive services, which include instrumental activities of daily living (such as assistance with medication management and transportation).
According to experts, up to 96 percent of assisted living residents need help with medications (Thompson, 2001). These residents take an average of 5 to 10 different medications (Sloane, Zimmerman, Brown, et al., 2002). Staff in assisted living facilities also have to deal with medicines that have been inappropriately prescribed or medicines proven to decrease morbidity that have not been prescribed (Sloane, Zimmerman, Brown, et al., 2002; Sloane, Gruber-Baldini, Zimmerman, et al., 2004; Gray, Hedrick, Rhinard, et al., 2003; Spore, Mor, Larrat, et al., 1996). One State found an overall error rate of 3.62 percent (Hyde, Segelman, Feldman, et al., 1998).
State regulations are unique in defining medication assistance, including who can assist with medications, who can administer medications, and the extent of staff training, supervision, and licensure required (NCAL, 2004). Consequently, assisted living services that are provided in the context of "medication assistance" vary. However, in a 1999 GAO study, the majority of facilities reported providing or arranging for medication reminders (91 percent) and central storage of medication and other assistance (87 percent) (Hawes, Rose, and Phillips, 1999).
In a GAO (1999) report, medication administration was cited as a service that was of "most concern" by researchers, inspector advocates, and residents' families. According to reports from 46 States and the District of Columbia, 61 percent of respondents noted that problems with medications occur frequently or very often, an increase over a 2-year period from 51 percent in 2002 (Mollica and Lamarche, 2005). The ALWG (2003) cited medication management as an important issue and challenge facing the assisted living industry and noted that the consumer should understand the services provided.
The ALWG addressed the social aspects of assisted living services in their core principles by noting that the facility should "foster a social climate that allows the resident to develop and maintain relationships with the facility and the community at large" (ALWG, 2003, p. 20). Carder (2002b) notes that certain practices promote the social model of care in assisted living, such as providing a home-like environment where the resident has choice and independence, as well as respect and dignity for privacy and individuality.
Key components of the assisted living environment are the kind and number of activities that the facility offers. Residents reported that 45 percent were involved in activities most or all of the time, while 55 percent reported that they were involved only some or none of the time (Hawes, Phillips, and Rose, 2000a). For activities sponsored off the campus, only 35 percent of residents reported that they were involved. The researchers considered two contributing factors: (1) that staff asked fewer than half of the residents' preferences on activities, and (2) the lack of transportation offered for residents to attend off campus outings (Hawes, Phillips, and Rose, 2000a). Suitable daytime activities in residential care have been determined as a resident need (Martin, Hancock, Richardson, et al., 2002).
Assisted living facilities provide two to three meals a day as a basic service, and in most definitions as noted earlier, must provide at least two meals daily to qualify as an assisted living facility. According to Hawes' study, few facilities provide private kitchens, so that the resident is dependent on the facility to provide meals (Hawes, Rose, and Phillips, 1999).
Cleaning of personal space, clothing, and linens is typically provided in the base price (monthly fees) of assisted living (MetLife, 2003).
Assisted living residents often need transportation such as a van or bus within a defined mileage radius for medical visits, personal care (e.g., beauticians), and recreational activities. A survey of assisted living facilities shows that more than 95 percent of facilities provide transportation for shopping and medical care (Kraditor, Dollard, Hodlewsky, et al., 2001).
The environmental scan revealed a wide variety of services and level of services provided across assisted living facilities. This lack of a uniform set of services, staffing, and facility characteristics inherent in assisted living that could facilitate true objective comparisons poses a key challenge in developing consumer instruments.
2 Available at http://www.aspe.hhs.gov/daltcp/reports/facres.htm.
3 For additional information on State occupancy requirements, see State
Residential Care and Assisted Living Policy: 2004 (Mollica and Johnson-Lamarche, 2005).
4 Refer to State Residential Care and Assisted Living Policy: 2004 for State-specific assisted living staff training requirements (Mollica and Johnson-Lamarche, 2005).