Care of Dementia and Other Mental Disorders in Assisted Living Facilities: New Research and Borrowed Knowledge

Research on assisted living facilities (ALFs) has demonstrated that their residents overlap considerably with those receiving long-term care in nursing homes (NHs) in terms of their ages, cognitive status, chronic medical illnesses, disability, and care needs.1 Based on these findings, studies conducted specifically in these facilities and lessons learned from research and experience in NHs should inform policies and practice in ALFs. Two articles in this issue of the Journal demonstrate high levels of dementia, other psychiatric disorders, and behavioral disturbance in ALFs, similar to the rates reported for NHs.2,3 Together, the articles provide compelling evidence that mental health (MH) care is an important component of the services that should be provided in these facilities, but interpreting and applying their findings requires integrating them with knowledge about the care of NH residents with these conditions. The article by Rosenblatt et al. reports findings from the Maryland Assisted Living Study, a National Institute of Mental Health–supported study based on structured clinical interviews of a representative sample of residents, families, and staff from a stratified sample of small and large ALFs in central Maryland.2 It reports that approximately two-thirds of the residents had a diagnosable dementia, and 70% of these had clinically significant psychiatric symptoms. Furthermore, more than one-quarter of the residents had another diagnosable psychiatric disorder. Approximately 70% of the residents had depression; 13% had an anxiety disorder, and 12% had a psychosis. Altogether, 80% of the residents had dementia or an active psychiatric disorder. The article proposes a broad view of what constitutes appropriate treatment for dementia, stating, “Treatment did not necessarily imply pharmacological or medical treatment. For example a participant with Alzheimer's disease, whose condition was recognized by the facility staff, who was receiving appropriate supervision, and who had a behavioral plan in place to prevent falls or other accidents, might have been regarded as fully treated for dementia.” They do not discuss activities or sensitivity to cognitive impairment in the manner in which moment-to-moment or day-to-day care is provided as components of treatment. Nevertheless, using this approach, they judged that approximately 50% of residents with dementia were receiving complete treatment. The article by Gruber-Baldini et al. reports on the Collaborative Studies of Long-term Care, a National Institute on Aging–supported study that obtained caregiver reports of behavioral symptoms in a random sample of residents from ALFs in Florida, Maryland, New Jersey, and North Carolina.3 It reported that approximately 50% of residents had dementia or cognitive impairment, 14% had depression, and 13% had a psychosis. Altogether, two-thirds had dementia, depression, psychosis, or another psychiatric disorder. The major findings were that approximately one-third of the residents exhibited a behavioral symptom at least once during the 2 weeks before the assessment. Twelve percent of the sample exhibited aggression, with the most common symptoms in this category being cursing and verbal aggression; 22% exhibited verbal behavioral symptoms, with the most common symptoms being constant requests for attention or help; 21% exhibited physical nonaggressive behavioral symptoms, with the most common being pacing, aimless wandering, and trying to get to a different place; and 12% of residents were reported to exhibit resistance to care. They found that behavioral symptoms were more frequent in residents with cognitive impairment, depression, psychosis, and other psychiatric disorders; those taking psychotropic medications; and those with functional impairment. Fifty-three percent of residents were taking a psychotropic medication, 21% were taking neuroleptics, 33% were taking antidepressants, and 24% were taking anxiolytics or hypnotics. Fifty-nine percent of residents taking psychotropic medications did not have current behavioral symptoms; according to the authors, this could represent either appropriate care or inappropriately high medication use. Thirty-six percent of those with behavioral symptoms were not receiving medication; again, according to the authors, this might represent insufficient assessment and treatment. In their discussion, the authors borrow from the recent consensus recommendations from the American Geriatrics Society and the American Association of Geriatric Psychiatry on Improving the Quality of Mental Health in U.S. NHs to recommend interdisciplinary assessment and treatment of behavioral symptoms and greater use of nonpharmacological interventions.4 The recommendation for nonpharmacological approaches includes the parenthetical qualification “especially if medications are not effective.” The two articles together provide compelling evidence that MH care is a necessary part of assisted living. In this, they extend previous findings on the similarity of ALF and NH residents. The implication must be that dementia and other psychiatric disorders are common causes, components, complications, or comorbidities of the disabilities that make long-term care necessary, regardless of whether services are delivered in ALFs, NHs, or other settings. The two articles are similar in some ways and different in others. They share a biomedical perspective but differ in the problems that they address. Rosenblatt et al.2 emphasize the prevalence and importance of psychiatric disorders and syndromes, whereas Gruber-Baldini et al.3 focus primarily on behavioral symptoms. Clearly, assisted living residents with cognitive impairment should receive biomedical evaluations to search for treatable causes and to provide individualized evaluations of the benefits versus the risks of pharmacological treatments. Also, residents with depression, psychoses, and other psychiatric disorders should receive appropriate, evidence-based treatments. However, the case for a first-line biomedical approach for behavioral symptoms is much more questionable. When residents exhibit constant requests for attention or help, the initial approach to management should probably be to see what they need or want. When they exhibit cursing and verbal aggression, the initial approach might be to determine what is causing their distress or frustration. Thus, for behavioral symptoms, the first-line evaluation and management should focus on a search for unmet needs, and mismatches between the individuals' abilities or needs and the challenges or opportunities presented by the environment. Nonpharmacological interventions should be attempted before medications are prescribed, not “especially if medications are not effective.” This is federal policy in NHs. The Centers for Medicare and Medicaid Services Resident Assessment Protocol on behavioral symptoms requires evaluation of cognitive status problems (e.g., delirium, dementia), mood or relationship problems, environmental conditions, worsening of medical conditions, communication deficits, and sensory impairments as potentially remediable causes of behavioral symptoms before use of medications. Given the magnitude of their MH care needs, it is clear that MH services are needed in ALFs. What kind of services? Again, it is useful to borrow from what has been learned in NHs. Streim and Katz discussed the value of two parallel but interacting MH systems in long-term care facilities.5 One is the professional system that relies on MH professionals, usually through Part B Medicare billing. It is activated for residents in need by referrals to evaluate the interactions between residents' medical and MH problems, establish psychiatric diagnoses, plan interventions, and administer specific treatments (pharmacological, psychosocial, and behavioral) for mental disorders. The other is the intrinsic system that includes those components of MH care that the facilities themselves provide, with costs included in per diem charges. It includes design of the social and physical environment to meet the needs of cognitively impaired residents, staff training, psychosocial and activities programs, formulation of institutional policies and procedures to meet the needs of those with mental disorders, ongoing monitoring of residents' symptoms and behaviors, and optimization of the ways in which staff and residents interact. The two systems interact in many ways, for example, when facility staff and physicians collaborate to monitor the therapeutic benefits and side effects of medications and when mental health professionals design behavioral interventions that facility staff implement. However, both are necessary in NHs and, based on the findings reported in this issue, in ALFs as well. Motivated by concerns about the variability in ALFs, the lack of standards, and questions about how consumers can evaluate the adequacy and quality of services, the U.S. Senate Special Committee on Aging recently asked professional groups, including the American Geriatrics Society, representatives of the assisted living industry, and consumer advocacy groups, to form an Assisted Living Workgroup to see what consensus they could reach regarding model rules and guidelines for consumers.6 The subgroup on direct care services achieved consensus on recommendations for MH and cognitive evaluations for all residents and on recommendations regarding the care of residents with dementia. The latter included staff training about cognitive impairment, dementia, and dementia care; procedures to help direct care staff understand and respond effectively to residents' behavioral symptoms; and specialized activities that are appropriate for residents with cognitive impairment/dementia. However, the subgroup on staffing issues was not able to achieve consensus on related recommendations for staff training. The articles in this issue reinforce the importance of these recommendations and provide an evidence base that should inform evolving public policy as well as the organization of facilities and the design of the services that they provide. Conversely, the report reinforces the principle that a biomedical orientation is necessary, but not sufficient, to meet the MH care needs of ALF residents. In this context, there must be concerns that the article by Gruber-Baldini et al.3 overemphasized the biomedical perspective and the pharmacological treatment of behavioral symptoms. Getting this right is critical. An ALF's approach to behavioral symptoms will have an effect on who can be admitted, who can stay, how safe residents will be, how rapidly people with dementia will decline, and what quality of life will be attainable. However, pharmacological treatments can have considerable risks as well as potential benefits. For the 21% of ALF residents who are receiving antipsychotic medications, recent findings from NH research are highly salient. Although risperidone and olanzapine, the two antipsychotic agents that are most widely used in NHs, have been shown to be efficacious for the treatment of psychosis and behavioral symptoms in NH residents with dementia, their Food and Drug Administration–approved labeling was recently modified to warn that subjects who received these agents in clinical trials experienced a 1% to 2% greater risk of strokes and related cerebrovascular adverse relatives. Moreover, the manufacturer of olanzapine recently sent a “Dear Doctor” letter to U.S. physicians reporting an increase in mortality for NH residents with dementia who received this medication in clinical trials. Given the overlap between NH and ALF residents, it is prudent to assume that these concerns apply in both settings. Thus, there are further reasons for a primary focus on nonpharmacological interventions in managing behavioral symptoms in ALFs and for ensuring a high level of professional expertise in evaluating the benefits and the risks of prescribing psychotropic medication. In ALFs, as in NHs, recognizing the importance of biomedical and social/environmental care as well as the professional and intrinsic MH systems can be a matter of life and death. More generally, optimizing rules and guidelines for care in ALFs will require systematic research like that reported in this issue, but what has been learned in other long-term care settings should inform the research and its interpretation. It would be tragic if the path for developing science, policies, and care for ALFs replicated the errors made in NHs. Supported by National Institute of Mental Health Advanced Center for Intervention and Services Research Mental Health Grant P3066270, and the VA Mental Illness Research Educational and Clinical Center at the Philadelphia VA Medical Center. Dr. Katz has been a consultant and an investigator for Janssen and Lilly. Although their products are mentioned in this editorial, this does not represent a conflict of interest or pro-industry bias.

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