| HOME | ARCHIVE | SEARCH | TABLE OF CONTENTS |
|---|
| ||||||||||||||||||||||||
Correspondence: Address correspondence to Joan Hyde, PhD, Gerontology Institute, University of Massachusetts, 100 Morrissey Boulevard, Boston, MA 02125. E-mail: joan.hyde{at}umb.edu
 |
Abstract |
|---|
 TOP Abstract MethodsResultsDiscussionReferences |
|---|
Key Words: Long-term care • Alzheimer's disease • Cognitively impaired • Aging in place • Residential care
Assisted living, as an industry, is less than 20 years old. Early research sought to enumerate how many people with dementia lived in assisted living, how many were in special care units (SCUs) or in general assisted living settings, and what kinds of services they received. However, even these simple facts have been elusive as basic data such as the prevalence of dementia can be difficult to determine in these non-health-care settings. In fact, determining which settings meet the criteria to be considered assisted living can, in itself, be less than straightforward.
Central to the assisted living philosophy is a respect for the individuals who live in this setting and their continued rights as citizens and human beings. However, this philosophy is challenged when the people served have cognitive impairments that compromise their ability to make or communicate decisions regarding their care and lifestyle choices.
Not all regulators, providers, family members, consumers, or advocates recognize or value the unique paradox inherent in assisted living. Medical versus nonmedical model debates are a symptom of this failure to recognize the dual nature of the assisted living product. A reconciling force is the social model philosophy, which one can characterize as a belief that healthy social interactions are, in fact, therapeutic. These therapeutic social interactions require respect for the individual, regardless of his or her level of impairment. Thus, at the microlevel, the preferences of people with dementia about most day-to-day aspects of their lives—when and what to eat for breakfast, what to wear, which social and recreational activities to partake in, or who to sit next to in the living room—are respected. However, much of the context for their lives—where they live, the ability to come and go outside that setting, what foods are offered to them, whether they get health care services such as medications—is decided by others.
|
Methods |
|---|
|
TOPAbstractMethodsResultsDiscussionReferences |
|---|
As the assisted living industry is relatively new, we included all relevant documents, regardless of date, finding that none were older than 20 years old and most had been published in the past 10 years. Given the relative youth of the field, quite often the papers identified for this review were small pilot projects, hypothesis-generating efforts, or opinion pieces. We note these distinctions in the text.
Current research fell into a number of categories, by which we sort our review. These include (a) resident characteristics; (b) characteristics of residential care/assisted living (RC/AL) settings serving people with dementia; (c) move-in/move-out criteria and aging in place; (d) the physical environment; (e) health care provision; (f) activities programming; (g) staffing issues; (h) families, informal caregiving, and interaction with the wider community; (i) regulatory and third-party payer issues; and (j) outcomes, measurement, and research issues.
|
Results |
|---|
|
TOPAbstractMethodsResultsDiscussionReferences |
|---|
Using the most commonly cited prevalence numbers (Evans et al., 1989), based on an assessment in a U.S. community, incidence of dementia rises to 47% past age 85. Because confusion, difficulty managing medications, and the need for help with basic and instrumental activities of daily living are key reasons for moving to assisted living, one can assume that dementia is somewhat more prevalent in assisted living than in the general population of the same age. We were therefore not surprised with the results of four recent studies, as shown in Table 1 (ALFA, 2006; Hawes & Phillips, 2000; Rosenblatt et al., 2004; Sloane, Zimmerman, & Ory, 2001) that reported dementia prevalence in assisted living ranging from approximately 40% to 67%. These prevalence numbers aggregated assisted living residents living both in special units or buildings and those mixed in the general dementia population.
|
|
|
Dementia SCUs became a common feature of nursing homes during the 1980s. By the 1990s there was a wealth of research regarding the characteristics and effectiveness of such units. Although the literature that came out of the National Institute on Aging Collaborative Studies of Dementia Special Care Units and the work of the various members of The Gerontological Society of America's Workgroup on Research in Special Care Units focused on nursing homes (Holmes, Teresi, & Ory, 2000), much of that work is relevant to dementia services in assisted living. Overall, although providers and experts generally believe that SCUs offer benefits to residents, most of the research on SCUs in nursing homes has found that living in an SCU does not, in itself, appear to lead to better outcomes (Chappell & Reid, 2000; Phillips et al., 1997). For example, a study of the advantages of mainstreaming versus living in a special unit in assisted living (Kuhn, Kasayka, & Lechner, 2002) suggested that mainstreamed residents might be more engaged in social activities.
As difficult as research has been in the highly regulated and standardized nursing home environment, it is even more challenging to design and carry out research on assisted living. Different providers, regulators, consumers, and other stakeholders have a more or less sophisticated appreciation of the range of different assisted living models generally, and among dementia providers within assisted living, thus creating challenges for researchers attempting to determine what types of service in which types of assisted living buildings are most effective for the diverse group of people who suffer from dementia and reside in assisted living.
Many assisted living settings also offer SCUs that set aside segregated floors, wings, or in some cases entire buildings for those with a dementia diagnosis. Descriptive studies have shed light on some of the basic facts regarding these specialized assisted living programs in the United States today. The Overview (ALFA, 2006) reported that Alzheimer's-specific properties had an average size of 39 units compared to a similar study done previously (ALFA, 2000), which found that there were an average of 47 units. Also, the nondementia buildings surveyed by ALFA in 2006 averaged 52 units, and the buildings that had both traditional and dementia-specific sections had an average of 92 units, of which 22 were in the designated dementia wing. The average years in operation of dementia-specific assisted living buildings, as of the 2006 study, was 7.8 years, nearly 3 years fewer than freestanding assisted living.
At about 88%, the average occupancy rate in specialty dementia assisted living in 2006 was similar to that in assisted living overall (90.1%). The average unit mix consisted of 36.8% semiprivate units, 53.5% private units, and 9.2% one-bedroom units (values may not add to 100% due to rounding). Average daily rates for reporting Alzheimer's-specific properties were $92.23 for semiprivate units and $106.69 for private units. According to a MetLife (2006) survey of assisted living costs, one quarter of the assisted living residences that provided dementia care charged anywhere from $750 to $2,200 in additional monthly fees. Keane and Cislo (2003), in a study of assisted living providers, used much the same methodology as the ALFA studies but focused on dementia in assisted living. The Keane and Cislo study found that 12% of respondents were stand-alone buildings dedicated to dementia services, 34% contained a special dementia unit, 9% had a specialized program without a secure separate unit, 20% offered dementia services of some type, 6% had other dementia arrangements, and 27% had no specific programs or services for people with dementia. Zimmerman and colleagues (2001) reported that 8% of smaller and traditional residential care buildings have or are dementia care specialty units, whereas 25% of new model assisted living facilities have such units. Of the new model assisted living buildings with specialized dementia units, 20% are dedicated dementia buildings and 80% are traditional assisted living buildings with a dedicated dementia unit.
Move-In/Move-Out Criteria
Some research has suggested that the majority of people with dementia who enter assisted living come from home or an independent-living retirement community (AARP, 2004b; Gaugler, Kane, Kane, Clay, & Newcomer, 2003; Hyde, 1996). ALFA (2006) distinguished between a resident's own home versus living in the community with family members or others. In their report regarding those who had moved into freestanding assisted living dementia care communities, ALFA found that 29.6% moved from their homes to assisted living and 51.6% moved from a residence where they lived with family members. They also found that 3.2% moved from a retirement/independent living community to assisted living.
There are some constraints on moving into assisted living if a person has cognitive decline. For example, in a study of state regulations (Hyde, 1996), more than half of the states studied had admission and discharge criteria that limited admission and retention of people with cognitive impairment. This was further illustrated by Chapin and Dobbs-Kepper (2001), who examined admission and discharge policies in Kansas. They found that out of 139 facilities, only 23% admit or retain significantly cognitive impaired residents in contrast to a report (ALFA, 1998) that approximately 77% admit or retain mildly cognitive residents.
Based on his review of six national studies, Golant (2004) concluded that assisted living residences were more likely to accept frail older persons when these people had less serious cognitive impairments and when they did not require ongoing supervision (e.g., did not wander; or did not have memory, judgment, or behavioral problems). He also indicated that less than 50% of the assisted living residences would accept older persons if they had moderate to severe cognitive impairments. A study of nearly 1,500 nondementia assisted living residences (Hawes, Phillips, Rose, Holan, & Sherman, 2003) similarly found that only 47% of administrators would admit a resident with moderate to severe cognitive impairment. In their study of dementia-specific units/programs in assisted living, Zimmerman and associates (2001) found that most will usually admit and retain people with problem behaviors, such as wandering at night; creating a disturbance; and making verbal, though not physical, threats toward other residents. Zimmerman and colleagues' findings concurred with those reviewed by Golant, in that non-dementia-specific assisted living residences were somewhat less likely to accept and retain people with behavioral symptoms. However, Zimmerman and associates (2001) found that the difference was not as striking as might be expected.
Aging in Place
The Alzheimer's Association (2005) and ALFA (2007) both support the ability of residents to age in place whenever feasible. However, Hawes and colleagues (2003) found that fewer than 45% of assisted living providers would retain a resident with severe cognitive impairment. Ball and associates (2004), in their study using qualitative methods in five assisted living facilities, found that even in assisted living residences that wish to serve the most frail residents and have it be their last home, there are many issues, including impaired residents being ostracized and moved to dementia units. And when care needs are very high, residents can experience neglect that calls into question their quality of life as they age in place. Ball and colleagues also found that, even though the facility was only one third full, the director of an assisted living residence that targets the affluent African American market said denial and money were the barriers to aging in place.
In an exploratory qualitative study by Aud (2004), administrators of assisted living residences reported that progression of dementia, wandering, and other "behaviors that did not meet the facility's expectations" (p. 20) influenced their discharge decisions. Another report (Aud & Rantz, 2005) indicated that the majority of residents who move to nursing homes from assisted living have a diagnosis of dementia or depression. Severely cognitively impaired residents were twice as likely to enter a nursing home as those who were mildly impaired (Phillips et al., 2003). The disparity between the assisted living philosophy and the reality as practiced by many providers suggests the need for more research on the actual impact of aging in place or not being allowed to age in place for residents, their families, staff, and the programmatic and financial viability of the assisted living program itself.
Length of Stay and Destinations Following Move-Out
There are several methods for calculating length of stay, including (a) length of stay of current residents to date; (b) length of stay of all residents who had ever moved in, regardless of whether they currently live at the assisted living facility; (c) prospective measurement of the length of stay of a particular cohort of residents over the life of a longitudinal study; and (d) length of stay only for those residents who have left. In calculating length of stay by any of these methods, researchers may or may not eliminate from the analysis very newly opened residences. Unfortunately, most studies do not specify which method was used in the analysis.
A recent AARP (2004b) publication reported the results of a 1-year study of assisted living residents generally in which, between baseline and follow-up, 81% of residents remained in the same facility, 8% went to a nursing home, 6% died, 4% moved to some other residential care setting, and 2% were discharged with their status unknown (values may not add up to 100 due to rounding). Among those who moved to another setting, the need for more care was the most commonly cited reason for leaving. The median length of stay for those who left was 19.6 months. Mitty (2004) reported that many residents wish to die in assisted living and that many states explicitly address the value of operations and services to encourage aging in place. Yet studies have shown that only 26% die in assisted living settings, and approximately 25% to 40% move to a nursing home. Mitty believed that nurses, particularly registered nurses, play a critical role in ensuring that residents age in place and the overall outcomes of care in assisted living. In the Overview (ALFA, 2006), for assisted living residents in all settings, 37.8% were discharged to nursing homes (33.5% for health reasons and 5.2% for asset spend down) in contrast to freestanding dementia care assisted living, in which 25.1% were discharged to nursing homes (14.1% for health reasons and 10.5% for asset spend down).
A pilot study (Perez, Hyde, Forester, Ahokpossi, & Hennen, 2007) of length of stay at assisted living residences for people with dementia (see Table 4) found that 165 residents left over a 3-year period (2002–2004). At these specialized dementia assisted living residences, a retrospective chart review found that the median length of stay was 22.2 months. These data are comparable to those published in the Overview (ALFA, 2006), which reported that, based on provider estimates, the average length of stay in an assisted living residence with a dementia wing was 22.0 months. A similar study (Keane & Cislo, 2003) that also used provider estimates found that the average length of stay in nondementia assisted living buildings was 28 months and in the dementia SCU was 23 months.
|
the only individual-level variable affecting an individual's likelihood of entering a nursing home was cognitive status. Individuals with severe cognitive impairment were roughly three times more likely to enter a nursing home than were those ALF residents with little or no cognitive impairment. (p. 15)
Physical Environment
Researchers have hypothesized a number of environmental characteristics, such as exit control, safe and interesting walkways, and appropriate levels of auditory and visual stimulation, to yield improved outcomes, such as reduced agitation and enhanced quality of life, among residents of facilities that serve people with dementia. Most of the earlier studies of the physical environment took place primarily in nursing homes (Brawley, 2001; Sloane et al., 2002; Teresi, Holmes, & Ory, 2000; Zeisel et al., 2003). Two more recent studies (Keane & Cislo, 2003; Samus et al., 2005) focused on the impact of the physical environment on dementia residents in assisted living settings. In addition, the CS-LTC collected facility-level and resident-level data in 350 RC/AL facilities and nursing homes in four states (Zimmerman, Sloane, Heck, Maslow, & Schulz, 2005). This data set yielded some correlations between resident outcomes and the physical environment. For example, Reed, Zimmerman, Sloane, Williams, and Boustani (2005) reported that "facility type was associated with intake, with residents of small RC/AL facilities less likely to have low food intake and residents of new-model RC/AL facilities less likely to have low fluid intake" (p. 77).
From a descriptive point of view, all of these studies found that dementia units nearly universally used some method of exit control to ensure safety. These units also shared basic safety features such as handrails in hallways and bathrooms. Due to their less restrictive regulatory requirements, assisted living facilities are able to offer more homelike environments. Because the philosophy of assisted living is to meet the individual needs of residents, and because people with dementia are as likely as any other group to have variability in their needs and preferences (Day & Cohen, 2000), it is difficult to measure universal "dementia friendliness" of the physical environment. However, assisted living is a richer research environment because of this variability when compared to the uniformity found in nursing homes.
Health Care Provision
Medication Management and Other Health-Related Services
The great preponderance of assisted living residents, including nearly all of those with dementia, have one or more chronic physical illnesses, take multiple medications, and receive medication assistance (ALFA, 2006). Consequently, some of the health-care-related issues for the dementia population in this setting include security of medication storage for all residents; the management of as-needed medications, especially psychotropics (Rosenblatt et al., 2004); and the management of diabetes treatment. Medication undertreatment of medical conditions, such as congestive heart failure and osteoporosis, appears to be prevalent in RC/AL facilities (Sloane et al., 2004). In addition, implementation of high-quality, safe, and clinically appropriate medication management practices in assisted living settings is variable. A U.S. General Accounting Office (1999) report documented four common problem areas in assisted living, one of which was problems with medication, such as providing the wrong medication or improper storage. There have been a few preliminary studies of medication management practices (Crutchfield, 1998; Garrard, Cooper, & Goertz, 1997; Hyde, Segelman, et al., 1998; Larrat, Spore, Mor, Hiris, & Hawes, 1995) that have yielded valuable information, yet their findings are inconsistent and their small samples warrant additional research. Obstacles to research in this area include variability of pharmacy records and multiple prescribers that make it difficult for researchers to obtain reliable information on each resident's medication regimen. This is compounded in the dementia population by residents' reduced ability to report reliably on their medications.
Other health-related services, such as assessment and treatment of mobility impairments (Williams, Zimmerman, Sloane, & Reed, 2005), may not be offered by the assisted living provider. Therapeutic diets are, in many cases, outside the purview of an assisted living facility's responsibility or expertise. Nonetheless, one recent study that addressed food and fluid intake for dementia populations (Reed et al., 2005) found that
while nursing homes are more likely to assess and treat residents, residents in small RC/AL facilities have better food outcomes, and those in new-model RC/AL facilities have better fluid outcomes. ... similarly, even after adjustment, residents having their meals in public dining rooms are much less likely to have low intake relative to those in their bedrooms. (p. 77)
Overall, the care setting (nursing home vs RC/AL) does not appear to be related to health outcomes (Sloane, Zimmerman, Gruber-Baldini, et al., 2005). This raises the question of what structure and process factors affect resident nutrition and other health-related outcomes.
Prevalence and Treatment of Psychiatric and Psychological Symptoms of Dementia
Beyond the health care needs of residents with dementia in assisted living, the behavioral and psychological symptoms of dementia are known to be prevalent complications of dementia that may require medical management. These symptoms often lead to excessive morbidity and mortality and add significantly to caregiver distress (Rosenblatt et al., 2004). Neuropsychiatric symptoms, such as depression, agitation, and aggression, are known to impair quality of life in patients with dementia (Samus et al., 2005). Experts have recommended screening for the prevalence of neuropsychiatric symptoms in primary care settings (Forester & Oxman, 2003, although this does not always occur, leaving assisted living providers to manage behaviors that have gone undiagnosed by their residents' physicians. Resident-specific factors related to an increased incidence of behavioral disturbances in dementia include increased age, male gender, functional impairment, severity of dementia, medical comorbidity, pain, psychosis, and depressed mood (Boustani et al., 2005). Behavioral and pharmacological treatments for these neuropsychiatric symptoms (including depression, psychosis, and aggression) are often effective (Doody et al., 2001), although patients require a thorough evaluation and ongoing coordinated follow-up with trained clinicians.
In a study of more than 2,000 assisted living residents with behavioral symptoms, 34% exhibited behavioral symptoms at least once a week, and more than 50% were taking a psychotropic medication (Gruber-Baldini, Boustani, Sloane, & Zimmerman, 2004). The prevalence of behavioral issues in this study was similar to the prevalence range reported in studies of residents in nursing home settings (Snowden, Sato, & Roy-Byrne, 2003). In addition, in the Gruber-Baldini and colleagues study, the prevalence of behavioral symptoms varied as a function of the type of RC/AL setting, with small settings having the highest prevalence. Gruber-Baldini and colleagues suggested that further research is needed to explore hypotheses derived from this finding, including the possibility that staff in smaller residences may demonstrate a greater tolerance of dementia symptoms; be more likely to report adverse behaviors; or, due to intimate working environments, actually engender increased behavioral symptoms.
Another study explored differences in the care of patients with behavioral symptoms of dementia among 347 residents of 45 assisted living and nursing homes from four states (Boustani et al., 2005). Prevalence rates of behavioral symptoms in dementia were similar (56%–66%) in both settings, and researchers found similar percentages of antidepressant, neuroleptic, and hypnotic use. Differences observed included the higher use of cholinesterase inhibitors in the assisted living settings but a higher use of professional services to manage behavioral symptoms of dementia in nursing homes. These variations in medication use persisted even after controlling for factors including extent of medical comorbidity, function, and cognition. These results point to similar problems with behavioral disturbances in both settings, similar overall use of psychotropic medications, yet less use of professional services in assisted living, identifying an area of potential need in the assisted living environment.
In addition to the behavioral complications of dementia, recent surveys have demonstrated the prevalence of other psychiatric conditions, specifically depression, that have a direct impact on quality of life and medical morbidity and mortality. Depression is a common comorbid psychiatric condition in people suffering from dementia that may also independently affect quality of life and function in those without dementia. In two related studies, Watson, Garrett, Sloane, Gruber-Baldini, and Zimmerman (2003) and Boustani and associates (2005) assessed the prevalence of depression with the Cornell Scale for Depression in Dementia (CSDD) among groups of 2,078 and 347 residents, respectively. The residents were all aged 65 and older from 193 assisted living residences across four states (Florida, Maryland, New Jersey, and North Carolina). Symptoms of dementia were present in 65% of the residents surveyed in the first sample. Using a cutoff score of 7 on the CSDD, researchers found that 13% had depression, yet only 18% of these individuals were on antidepressant medications. More than one third of residents had symptoms of depression, such as "anxious expression, rumination, or worrying" (Watson, Garrett, Sloane, Gruber-Baldini, & Zimmerman, 2003, p. 540) Depression was significantly associated with medical comorbidity, social withdrawal, psychosis, agitation, and length of residence in the facility. Furthermore, depressed residents were discharged to nursing homes at 1.5 times the rate of nondepressed residents. Those residents with severe depression (CSDD score >12) had a statistically significant increased rate of death. The authors concluded that providers should make a strong effort to detect and treat depression in the assisted living setting both to "reduce suffering and prolong the resident's ability to remain in their preferred environment" (Watson et al., 2003, p. 541).
In summary, recent research has described a high prevalence of neuropsychiatric symptoms in assisted living environments, symptoms that highly impact quality of life and require careful clinical oversight and management.
Activities Programming
In its 2005 practice guidelines, the Alzheimer's Association designated social engagement and involvement in meaningful activities as a key practice recommendation that was purportedly evidence based. Although many experts concur that persons with dementia are likely to benefit from a daily schedule of meaningful and socially appropriate activities (Assisted Living Workgroup, 2003; Chafetz, 2001; Hyde, 1995; Kuhn et al., 2002), we found few studies that measured outcomes associated with activities processes, nor did a recent literature review released by the Alzheimer's Association (Tilly & Reed, 2004) cite such evidence.
Some of the activities that are particularly helpful include listening to music, taking walks, gardening, painting, receiving a hand massage, and participating in familiar activities familiar (Chafetz, 2001). Although a number of researchers (Chafetz, 2001; Hyde, 1995, 1996) have suggested that dementia sufferers may benefit from doing meaningful activities such as meal preparation and laundry, there are some states that do not allow this (Gitlin & Corcoran, 2005; Hyde, 1995). Among the literature on specific programs, there is a sense that activities should provide appropriate stimulation and match the resident's level of cognitive ability. For example, in their discussion of Montessori-based activities, Orsulic-Jeras, Judge, and Camp (2000) stated that "activities staff in many long-term settings tend to offer mainly large group activities, such as discussion groups and current events programs" (p. 1) that they posited are not effective for people with severe dementia. In contrast, these authors in their study with 16 residents (14 women) from a step-down advanced dementia unit reported that the Montessori-based small-group activities, including puzzles and category sorting using pictures, seem to be effective in eliciting positive forms of engagement in persons with dementia and allowing them to express their social skills.
In their review of outcomes measures for dementia, Hyde, Hillygus, Levkoff, and Levy (1998) found that studies of activities programming typically measured only the existence, frequency, and nature of activity. Although some small and qualitative studies suggested that specific interventions, such as pet or music therapy, may be helpful, a systematic review of the literature by Livingston, Johnston, Katona, Paton, and Lyketsos (2005) concluded that "music therapy and Snoezelen, and possibly sensory stimulation, were useful during the treatment session but had no longer-term effects" (p. 2016).
Another limitation in the literature is that much of the research on activities was done in nursing home settings, and there have been few studies of activities programming for dementia specific to assisted living. Three that we identified in this review included a study by Kuhn and colleagues (2002), which found that few structured activities and little diversity in activities were offered to or engaged in by residents in the 10 assisted living residences they studied. A study by Kane (2004) provided a comprehensive list of activities offered in assisted living yet did not specifically address the different types of activities programming offered for cognitively impaired residents. Finally, Dobbs and associates (2005) reported that residents "were significantly more likely to indicate a higher number of activities enjoyed in RC/AL" (p. 83) than in nursing homes.
Staffing
Staff Roles
The interactions staff have with cognitively impaired residents are critical to the residents' ability to live with dignity and respect while hoping to age in place. Investigators have paid a lot of attention to adequate staffing and training and identifying the critical roles of staff; however, most of the research has been done in nursing homes. The great majority of assisted living residences require at least some dementia training for their staff (Sloane et al., 2001; Zimmerman, Williams, Reed, Boustani, Preisser, Heck, et al., 2005). Keane and Cislo (2003) found that assisted living providers report an average annual training of 23 hr for staff, including 6 hr of dementia training. Singer and Luxenberg (2003) and the Alzheimer's Association (2005) cited research that suggests that staff who are trained to understand the prognosis and symptoms of dementia are better prepared to care for people with dementia. Given these widespread reports of training, the fact that Hawes and Phillips (2000) found that 88% of resident assistants thought confusion was a consequence of normal aging suggests that more investigation into the worldview of direct caregivers, and how training may or may not influence their views, is needed.
The Overview (ALFA, 2006) reported that freestanding dementia buildings have more staff (average of 98.7 full-time equivalents per 100 residents) than traditional assisted living buildings (60.4 full-time equivalents per 100 residents). More than half of the dementia-specific assisted living properties use universal workers, as compared to 44% of all properties in the 2006 Overview. Corroborating this finding was a study by Rosenblatt (2005) that suggested that caregiver time jumps from an average of approximately 100 min per day for assisted living residents with normal cognition or mild to moderate cognitive impairment (down to a Mini-Mental State Examination score of 17 on a scale of 1–30) to more than 300 min per day for those with scores in the 11 to 16 range and more than 400 min a day for those whose score is 10 or below.
The same study also suggested that there is a need for specialized nursing staff with training in dementia. Hawes and colleagues (2003) found that 29% of assisted living buildings had no licensed nurse on staff, though these buildings typically have arrangements of various sorts with a home health agency or contract nurse. However, this does raise questions about the ability of providers with little or no nursing staff available to recognize changes in a resident's functional status that may signal a need for evaluation or treatment. This study did not break out nursing time for dementia SCUs, where presumably there would be more staff nursing. Phillips and associates (2000) reported that higher levels of nursing are correlated to aging in place for the general assisted living population. Mitty (2004) agreed that nurses' roles can make a difference in the ability of elders to age in place, although Hyde, Segelman, and colleagues (1998), in evaluating medication management policies in assisted living, found that nonprofessional direct care workers made the same or fewer medication errors than nurses. Similar research in dementia-specific assisted living would be helpful as well.
Staffing Issues
Finding and retaining good-quality staff is as challenging in assisted living as in other sectors of long-term care. Sikorska-Simmons (2006) maintained that turnover has negative effects on staff morale and quality of care. In her study using self-administered questionnaires to staff, she found that staff who reported higher levels of organizational commitment were more satisfied with their jobs. In addition, lack of organizational commitment has been acknowledged to predict turnover. Singer and Luxenberg (2003) reported that staff found caring for dementia patients stressful, which leads to staff turnover. They further found that staff need training in the recognition and understanding of nonverbal cues to detect resident problems. Winzelberg, Williams, Preisser, Zimmerman, and Sloane (2005) suggested that nursing assistants have a major role in the quality of life of residents in long-term care because these staff members perform the majority of care. In their survey of nursing assistants, Winzelberg and colleagues found that nursing assistants recognize the need for additional dementia-specific education. Zimmerman, Sloane, Eckert, and colleagues (2005), in their study of attitudes and stress of staff caring for dementia residents, concluded that environmental and personal characteristics are likely to have an influence on staff attitudes; that attitudes toward person-centered care for dementia residents is related to worker satisfaction, particularly in newer facilities; and that worker stress is higher in facilities with specialized dementia care units. Also, they suggested that, as the minority population of the United States is expected to increase, cultural sensitivity training will become increasingly important, as will training to increase sensitivity to residents' diverse family situations. For example, Cook-Daniels (2002), in discussing the research of Raphael, reported that some staff are hesitant to bathe gay or lesbian residents. The current and projected shortage of direct care workers presents many challenges for assisted living providers, policy makers, staff, loved ones, and the residents themselves. There is some research that has been conducted, and additional research is needed to address the staffing issues that contribute to the shortage.
Parks, Haines, Foreman, McKinstry, and Maxwell (2005) implemented a pilot project evaluating the intervention of a novel educational program consisting of five in-service lectures with accompanying take-home self-study modules for nursing assistants in assisted living and nursing homes. The project found that its educational program on end-of-life care for dementia residents improved end-of-life knowledge and attitudes, particularly with regard to dementia as a terminal illness, among long-term care ancillary staff, and that this improvement can be easily reproducible. In a unique approach to training (Camp & Skrajner, 2004), residents with mild dementia were trained to lead activities for late-stage dementia residents. All activity leaders stated that they enjoyed training, and there was high-quality engagement by the participants with advanced dementia.
Role of Family, Friends, and Informal Caregivers
There is considerable consensus in the literature that family support contributes to the quality of life for persons with dementia, and that if the family visits are positive, there is opportunity for the wishes and needs of residents with dementia to be respected and honored. Also, as assisted living is becoming home to more people with dementia who desire to age in place, more assisted living providers are acknowledging and encouraging an increase in family support (J. M. Mitchell & Kemp, 2000). Chafetz (2001), in his discussion on dementia care in assisted living, suggested that providers encourage positive visits from family and friends because these visits offer an opportunity for an expression of love and affection, and that for residents who have mild or moderate dementia, a visit from family and friends can "awaken memories of past interactions that can be universal pleasures" (p. 110). Ball and colleagues (2004) found that family support was a key component in managing residents' decline and therefore affecting retention of residents. In a study of the quality of life in assisted living, Mitchell and Kemp further suggested that the social component of residents' lives, including family visits at least once a month, can make a contribution to positive quality of life.
Family and friends also have a stake in defining what services are needed and provided and how they ensure residents' well-being (Hyde, Hillygus, et al., 1998). In a recent study with interviews with family members of people with dementia, Port and associates (2005) found that even though family caregivers monitored the residents' medical status and well-being more frequently in assisted living than in nursing homes, 44% of the respondents sought more frequent communication from staff, including "more consistent notification of the change in the resident's status" (p. 92). Increased family communication with staff is consistent with the Alzheimer's Association (2005) recommendation that staff can determine how best to serve each resident by knowing as much as possible about each resident's life story, preferences, and abilities.
Families and caregivers of people with dementia also play a significant role in the decision to move to assisted living. Marsden (1999) believed that, among persons in the general population, the perceived homelike environment of assisted living may encourage the involvement and support of family members and friends. This was supported by Singer and Luxenberg's (2003) finding that families and lay caregivers are increasingly choosing the more homelike environments of dementia-specialized assisted living residences rather than SCUs in nursing homes. Administrators report that "families are as important as residents" (p. 23) in making assisted living feel like home and in being involved in activities (Kane, 2004). Kane further stated, "This emphasis was so strong that it raised questions about the fate of those residents with no engaged family or friends" (p. 23).
States differ regarding the mechanisms by and the extent to which family members who have not been appointed by the courts as legal guardians can act as resident proxies. Also variable are the arrangements for persons with dementia who do not have family or friends or whose family members may not be legally recognized, such as gays and lesbians. The legal position of same-sex partners is evolving. According to Cahill, South, and Spade (2000), "Nursing homes and assisted living facilities have ignored the special needs of gay, lesbian, bisexual and transgender (GLBT) elderly and the dearth of data on old GLBT people makes identifying problems and advocating for solutions very difficult" (p. IV). This potentially puts the spousal equivalent (domestic partner) of residents from the GLBT community in the "friend" category, an inaccurate reflection of the caregiving of important members of their family. It also ignores the GLBT individual's extended family, which often includes a close-knit network of friends who may know the resident the best and may be able to provide a history of their cognitively impaired loved one. Nontraditional family members can increase the amount of information provided about residents' likes, dislikes, and life experiences, which helps staff improve quality of life for residents with dementia. This may ultimately increase the likelihood that residents with dementia can remain in assisted living longer.
The legal authority of family members and other representatives becomes particularly crucial when the resident's wishes are contrary to the recommendations of the assisted living provider or medical professionals. This issue is difficult enough when cognitively capable assisted living residents make choices that carry risk of harm. When the resident has dementia, the role of assisted living providers and family members either in enforcing a medical regimen unacceptable to the resident or accepting the risk their behavior entails on their behalf becomes even more problematic. The fact that families have their own needs and preferences, which are occasionally different from those of the assisted living resident, while at the same time acting as proxies for those residents can complicate care decisions and the measurement of relevant outcomes, such as resident satisfaction.
Regulatory and Third-Party Payer Issues
Many states have language for dementia-specific programs in their assisted living regulations. The topics covered typically include some or all of the following: admission and discharge criteria; safety, especially exit controls; staffing levels and training; medication management practices; and disclosure of "what is special" about the SCU. Other states have broad regulatory language that pertains to services for the dementia population in the general assisted living population. Finally, as of 2002 (Hyde & Mollica, 2002), 14 states had "no provisions for residents with Alzheimer's disease and dementia in the assisted living regulations" (p. 51). Nonetheless, some aspects of the regulations indirectly affect dementia care practices without specifying that they are targeting this population. These include admission/discharge criteria having to do with incontinence, ambulation, ability to evacuate independently in a fire, and level of assistance available with medication management. There has been little research on the impact any of these regulations have, either in supporting or constraining the ability of providers to serve people with dementia.
Very little is known about the precise difference in costs and charges for people with dementia in assisted living, either in the general population or in specialized units. The MetLife Market Survey of Assisted Living Costs (2003), which provided detailed comparative base rate monthly charges for high- and lower end assisted living, stated that "twenty-one percent of surveyed facilities offer dementia care. The vast majority of facilities charged a higher fee per month for Alzheimer's care" (p. 5). Another study (Leon et al., 1998) suggested that assisted living residences they studied charged about 70% of the average nursing home rate for residents of a similar dementia severity. However, those in nursing homes were more likely to have additional health problems that affect the cost of care, and "each additional co-morbid condition ... increased costs by $1,863 per month on average, irrespective of the number of co-morbid conditions or the patient's disease severity levels"(Leon, Cheng, & Neumann, 1998, p. 211).
About 10% of residents in assisted living receive support through state Medicaid waiver programs. There are several different systems for setting assisted living Medicaid rates (Hyde & Mollica, 2002), but few of them recognize the differing care needs of those with dementia, and many do not cover the actual costs of serving higher acuity and cognitively impaired residents. As federal and state governments seek to come into line with the Supreme Court's Olmstead decision (Howell-White, Gaboda, Rosato, & Lucas, 2006), Medicaid and other government subsidies are challenged to find ways to provide the health-related services disabled people need in less institutional settings, and so are being forced to address these issues. Many states have instituted service-enrichment programs of various sorts for frailer residents of subsidized senior housing buildings, programs that begin to approximate, overlap with, or actually become assisted living settings. Although presumably these settings are less likely to serve cognitively impaired residents, research that would give providers, regulators, and consumers more information about dementia in service-rich subsidized senior housing would be helpful. Further research along these lines is also needed regarding the impact on the cognitively impaired assisted living population and on admission and discharge decisions of different reimbursement systems for state Medicaid and housing subsidy programs (G. Mitchell, Salmon, Polivka, & Soberon-Ferrer, 2006).
Outcomes, Measurement, and Research Issues for the Dementia Population in Assisted Living
The U.S. Department of Health and Human Services defines research as "a systematic investigation ... designed to develop or contribute to generalizable knowledge" (U.S. Department of Health & Human Services, 2006). As assisted living for dementia evolves, part of the issue is what generalizable knowledge assisted living's various stakeholders need.
In the long-term-care field, most research has focused on the relationship of structure and process, as mediated by resident characteristics, on resident outcomes. Chappell and Reid (2000) identified five dimensions of care in their literature review that are generally considered to be relevant to outcomes in dementia care. These are: assessment and diagnosis; staff specialization and ongoing education; nonuse of restraints (both physical and chemical); flexible care routines, including client-relevant activities; and specialized environmental design and adaptation. The studies they reviewed and their own study were primarily in a nursing home population. Chappell and Reid went on to write, "These dimensions have received varying degrees of attention in the literature" (p. S235), with the most attention going to staff training and some attention being paid to care routines and the physical environment. Falls, elopements, acts of aggression, pain, and other adverse outcomes have been the subject of many anecdotal reports and few rigorous reviews or studies.
Delineating Outcomes
In considering which outcomes to measure, several researchers (Bowers, Fibich, & Jacobson, 2001; Edelman, Guihan, Bryant, & Munrow, 2006; Gwyther, 1997; Hedrick et al., 2003; Hirschman, Joyce, James, Xie, & Karlawish, 2005) have acknowledged that different outcomes are weighed and defined differently among the different stakeholders. Thus, we identify the following outcomes by how these different groups would define them. Cognitively impaired residents may be most concerned with the following outcomes: (a) quality of life, dignity, autonomy, ability to engage in activities that bring pleasure and a sense of accomplishment, ability to maintain meaningful relationships; and (b) health, including reduction of pain, suffering, and disability; purposeful medication management; unnecessary or premature death or illness (Lingler et al., 2006). Families, friends, professional caregivers, and regulators are likely to value the same outcomes, though they may express them differently and are likely to also value meaningful social interactions with residents and the ability to age in place. Providers, third-party payers, and regulators have the following additional outcomes of interest: (a) avoiding behavioral symptoms that distress or harm caregivers and neighbors; and (b) containing costs by determining which expenditures on structure and process are most cost effective for those with dementia living in assisted living, with special attention to the efficacy in differing subgroups of this diverse population (Lowe, Lucas, Castle, Robinson, & Crystal, 2003).
Given its centrality to the assisted living philosophy, much of the recent research has focused on quality of life. Reports coming out of the CS-LTC (Zimmerman, Sloane, Heck, Maslow, & Schulz, 2005), which studied assisted living residences in four states, as well as from groups out of Johns Hopkins University in Baltimore (Rosenblatt et al., 2004), which looked primarily at Maryland residential care settings, and Mather Lifeways (Edelman, Fulton, Kuhn, & Chang, 2005) from the Chicago area, have added greatly to the understanding of outcomes measurement, especially measurement of quality of life. For example, a study by Kuhn and associates (2002) suggested that residents in mixed assisted living settings may be more engaged in social interaction and have a higher quality of life than those in dementia-specific settings. Another report from the same group (Edelman et al., 2005) found that data derived from three different sources (direct resident report, family/proxy report, and research/observation) regarding quality of life differed significantly. The CS-LTC group (Sloane, Zimmerman, Williams, et al., 2005) drew similar conclusions from their study of outcomes measures: "No ‘gold standard’ exists; so a combination of methods and sources is likely to provide the most complete picture of quality of life" (p. 144). Samus and associates (2005) from the Johns Hopkins group found that different "care environments [i.e., large/small/specialized] did not have a significant impact on quality of life in this study" (p. 24). They concluded that "future research should focus on the further identification of resident and environmental factors that influence quality of life in assisted living, the predictive power of these factors over time, and the effects of interventions targeting these factors" (p. 25). Wylde (2000) reported on a national sample of customer satisfaction surveys, and there have been a number of studies on quality-of-life ratings among assisted living residents, including those by J. M. Mitchell and Kemp (2000) and Zimmerman, Sloane, Williams, and colleagues (2005), who found a correlation between quality of life and specialized workers (as opposed to universal workers) trained in dementia, encouragement of activities participation, resident grooming, and direct-care staff involvement in care planning.
In another study (Gonzalez-Salvador et al., 2000), researchers compared 56 residents with dementia in assisted living with 64 similar residents in a nursing home. This study found that in the report on Alzheimer's disease-related quality of life (ADRQL),
the assisted living residents had significantly higher total ADRQL [a quality-of-life measure] scores and ADRQL subscale scores than the [skilled nursing facility] residents, with the exception of the ADRQL-E [interacting with the environment] subscale. No significant correlations were found between ADRQL and the following: resident age, caregiver age and daily or weekly care time. (p. 184)
Other Methodological Issues
Assisted living research shares many of the same challenges as other research in long-term care settings, as well as the additional challenges inherent in these nonstandardized settings. Research with cognitively impaired participants is also fraught with difficulties. One of the specific challenges is the diversity of the types of places known as assisted living. A second challenge is the lack of standardized assessment tools, such as the Minimum Data Set found in nursing homes. Although this variability in systematic assessment is consistent with the assisted living philosophy and may better match the expectations and wishes of residents, it has a number of implications for researchers. For example, assisted living providers have little authority to require residents to obtain a full dementia workup, and thus record reviews do not consistently obtain medical diagnoses of the residents' cognitive decline. Most notable is the difficulty involved in using existing assessment and service-planning records to compare resident characteristics, and the consequent expense and difficulty involved in assessing each participant individually in person to obtain interrater reliability. Lack of consistent assessment also makes it difficult to rate the efficacy of different interventions on differing populations. As research for the dementia population in assisted living evolves, researchers continue to refine definitions and tools for measuring structure, process, resident-level data, and outcomes.
|
Discussion |
|---|
|
TOPAbstractMethodsResultsDiscussionReferences |
|---|
Methodological Obstacles and Recommendations
However, there continue to be obstacles to meaningful research in this area. The first is methodological: The gold standard for research is randomized double-blind trials. However, performing varying interventions without the participant's consent or knowledge is, in most cases, neither ethical nor possible. Retrospective studies using existing data sets are, likewise, fraught with methodological difficulties. The greatest obstacle is the lack of a uniform resident information and data collection tool in this industry. In developing software for assisted living providers, we found that assessment tools show considerable variability among providers (Hyde & Neagle, 2006). Some states have a mandated assessment instrument, and, of those that do, several use a modified version of the clinically driven Minimum Data Set tool used in nursing homes (Hyde & Neagle, 2006). However, the existence of a standardized assessment tool does not necessarily increase the reliability of provider reports from a research standpoint. For example, staff may believe that a resident is cognitively impaired, but there may or may not be a dementia diagnosis in the medical records transmitted to them by a health care provider or the family. Conversely, there are several reports (Boustani et al., 2005; Rosenblatt et al., 2004) that suggest that staff may underestimate the severity of their residents' dementia. Furthermore, the simple notion that a person carries the diagnosis of Alzheimer's disease or one of the other dementing illnesses, or even the fact that their dementia is severe or mild, imparts relatively little information about a particular individual's safety awareness, social skills, or other important characteristics. Qualitative research is, therefore, a valuable tool in this area that when combined with these other methods has yielded important insights into the needs of assisted living residents with dementia and the efficacy of various approaches to their care.
Research in this as in many areas of health policy is hampered by necessary resident confidentiality and consent requirements, which in turn are further complicated by the limitations on permissible informed consent of residents with dementia. Furthermore, although some assisted living providers have been receptive to researchers working in their buildings, many are understandably reluctant to intrude on the lives of their residents and the workload of their staff. Given the lack of existing data sets, however, researchers need such in-person data collection opportunities to further the state of knowledge.
Even with the increased collaborative research of the past few years, there are significant variations among studies regarding the methods used to operationalize, measure, and calculate variables. Given the more sophisticated technology now available, it may be possible to collect data in a variety of ways consistent with the preferences of providers and residents while still allowing for comparability for research purposes. We further recommend that all published research include detailed descriptions of methods and, where feasible, the full text of instruments if they are not in common use. This transparency will further the spread of knowledge. In addition, we encourage researchers to continue to share ideas and information through collegial forums such as The Gerontological Society of America's Assisted Living Special Interest Group and organizations such as the Center for Excellence in Assisted Living.
Research Topics: Suggestions for Future Research
This article has provided a summary of research to date regarding the characteristics of, and needs and services provided to, people with dementia in assisted living settings, the processes involved in their care, and the outcomes correlated to these factors. We have identified a number of areas in which more research would yield information that would benefit assisted living consumers and providers. Although there is a rich literature on treatment and care practices for people with dementia in community and nursing home settings, much of this needs to be replicated, and new types of research initiated, in assisted living settings. In particular, the variability of approaches in assisted living settings provides a rich arena for researchers wishing to compare differing approaches to care. Table 5 provides an inventory of the research topics suggested by researchers or found to be gaps in our literature review, areas in which additional research would be useful to providers, consumers, regulators, and other stakeholders.
|
models of staffing and staff supervision and mentoring should be tested to determine how to best configure staffing for effective care for those with varying severity of dementia. In fact, these different approaches offer an opportunity to study the impact of the organizational structure on resident outcomes, and to devise research that will allow us to make meaningful recommendations about evidence-based practices. ... This review clearly indicates a need for further research on interventions to improve care for people with dementia in nursing and assisted living facilities. Future research should include a focus on people with dementia as a unique subgroup ... and should evaluate interventions to improve eating, drinking and sleeping patterns, among other care areas. (p. 9–10)
Beyond eating, drinking, and sleeping, research is needed to best understand how to maximize "valued outcomes for persons with dementia" (Gwyther, 1997, p. 22). Assisted living providers and consumers would undoubtedly add "the quality and authenticity of caregiver/resident interactions" and "the respect for resident autonomy and self-actualization" (Hyde, Hillygus, et al., 1998, p. 266). In fact, objective measures of health explain less than half of the variance in perceived quality of life in this population (George, 1993). Furthermore, researchers need to be cautious about care practices that reduce personal choice, as Perlmutter, Monty, and Chan (1986), among others, have found autonomy to be associated with life satisfaction, emotional well-being, and health status in seniors with cognitive impairment.
Assisted living was developed specifically to be responsive to residents' own definition of quality. The challenge will be to design research that respects that mission and honors the dignity of those whom assisted living seeks to serve; to find meaningful and appropriate ways to ask questions of people with dementia; and to measure, with reasonable reliability and validity, their responses to care and treatments. As Maslow and Heck (2005) wrote in the foreword to a special issue of The Gerontologist, "The cross-sectional nature of the data that underlie these and other findings ... means that the direction of the associations is not certain and some of the findings may be most useful for generating hypotheses for future research" (p. 9). Zimmerman, Sloane, Williams, and colleagues (2005) wrote, furthermore, in the conclusion to the same volume, that the research completed to date "suggest[s] directions for hypothesis generation and further exploration and evaluation" (p. 145). With this in mind, we concur with Tilly and Reed (2004) as they conclude their literature review with the plea for "an aggressive research agenda to expand our knowledge of effective treatments for persons with dementia and improve the care of a very vulnerable population" (p. 15).
|
Footnotes |
|---|
2 Center for Aging Studies, University of Maryland, Baltimore, MD.
3 McLean Hospital, Belmont, MA.
Decision Editor: Susan L. Hughes, DSW
Received for publication June 17, 2006. Accepted for publication April 12, 2007.
|
References |
|---|
|
TOPAbstractMethodsResultsDiscussionReferences |
|---|
| ||||||||||||||||||||||||
| HOME | ARCHIVE | SEARCH | TABLE OF CONTENTS |
|---|
