We compared data drawn from a random sample of 399 current assisted living (AL) residents and a subsample of 222 newly admitted residents for two groups: childless AL residents and AL residents with children. The percentage of childless AL residents (26%) in our study was slightly higher than US population estimates of childless persons age 65 and over (20%). In the overall sample, the two groups differed significantly by age, race and women's years of education. The childless group was slightly younger, had a higher percentage of African American residents, and had more years of education than the group with children. In the subsample, we looked at demographic, functional, financial and social characteristics and found that compared to residents with children, fewer childless residents had a dementia diagnosis, received visits from a relative while more paid less money per month for AL and reported having private insurance. As childlessness among older adults continues to increase, it will become increasingly important to understand how child status affects the need for and experience of long-term care.
ABSTRACT Background: To estimate the 12-month incidence, prevalence, and persistence of mental disorders among recently admitted assisted living (AL) residents and to describe the recognition and treatment of these disorders. Methods: Two hundred recently admitted AL residents in 21 randomly selected AL facilities in Maryland received comprehensive physician-based cognitive and neuropsychiatric evaluations at baseline and 12 months later. An expert consensus panel adjudicated psychiatric diagnoses (using DSM-IV-TR criteria) and completeness of workup and treatment. Incidence, prevalence, and persistence were derived from the panel's assessment. Family and direct care staff recognition of mental disorders was also assessed. Results: At baseline, three-quarters suffered from a cognitive disorder (56% dementia, 19% Cognitive Disorders Not Otherwise Specified) and 15% from an active non-cognitive mental disorder. Twelve-month incidence rates for dementia and non-cognitive psychiatric disorders were 17% and 3% respectively, and persistence rates were 89% and 41% respectively. Staff recognition rates for persistent dementias increased over the 12-month period but 25% of cases were still unrecognized at 12 months. Treatment was complete at 12 months for 71% of persistent dementia cases and 43% of persistent non-cognitive psychiatric disorder cases. Conclusions: Individuals recently admitted to AL are at high risk for having or developing mental disorders and a high proportion of cases, both persistent and incident, go unrecognized or untreated. Routine dementia and psychiatric screening and reassessment should be considered a standard care practice. Further study is needed to determine the longitudinal impact of psychiatric care on resident outcomes and use of facility resources.
Objectives To describe and contrast functional dependency (FD) levels among recently admitted AL residents with and without dementia and to assess the differential contribution of cognitive, behavioral, medical, and social factors on FD within each group. Design A cross-sectional study. Setting A random sample of 28 AL facilities in the Central Maryland region. Participants Two hundred and sixty-two AL residents assessed less than1 year after admission. Measurements Participants were given comprehensive in-person dementia assessments. Cognitive, behavioral, medical, and social factors were also assessed. FD was operationalized as impairment in activities of daily living. Results The 59% of residents with dementia had higher levels of FD (P < .001) and were more likely to require assistance in all assessed task-specific ADL domains (P < .001) except mobility (P = .653). In multivariate models, global cognition, medical health status, and presence of diabetes explained 43% of the variance in FD in the dementia group. Twenty-five percent of the variance in FD was explained by depression, neuropsychiatric symptoms, and global cognition in those without dementia. Conclusions Recently admitted AL residents have substantial levels of FD. FD is higher among residents with dementia compared with those without and the association of cognitive, mental health, and medical variables with FD differ as a function of dementia status. Future research should examine how these dimensions affect FD longitudinally and whether they may serve as targets for interventions and quality of care improvement initiatives.
Objectives: This study examines how surrogate decision makers for dementia patients developed an understanding of patient preferences about end-of-life (EOL) care and patient wishes. Methods: Semistructured interviews were conducted with 34 surrogate decision makers for hospice-eligible nursing home patients with dementia. The data were content analyzed. Results: Most surrogates reported that patients had previously completed an advance directive (59%), discussed preferences for EOL care (56%), or done both (38%). Catalysts for and barriers to completing an advance directive or having EOL care discussions included factors that were both intrinsic and extrinsic to the patient. The most commonly reported wish for EOL care was to not be kept alive by "machines" or "extraordinary measures." Discussion: Health care providers may be able to assist patients and families by normalizing discussions of dying, encouraging advance care planning, helping them identify goals for EOL care, and providing information to support treatment decisions consistent with patients' wishes.
OBJECTIVES:There exists little information describing the spectrum and correlations of sexual behaviors manifested by elders with dementia living in residential care.METHODS:Data are from a retrospective case-control study of improper sexual behaviors manifested by 165 elders with dementia living in a residential care facility in 2005.RESULTS:Three types of behavior were evident: (1) intimacy-seeking, (2) disinhibited, and (3) nonsexual. Intimacy-seeking behaviors were associated with Alzheimer disease, and disinhibited behaviors with non-Alzheimer dementias. Behavior type was associated with dementia severity.CONCLUSIONS:Delineation of the types of improper sexual behaviors occurring in dementia has practical implications for practice and research. Progress will require prospective studies with systematic ascertainment of cases and variables, and recruitment from large sampling frames.
To the Editor: A substantial proportion of assisted living (AL) residents suffer from dementia.1 Although most are cared for in non–dementia-specific care units (NDSCUs), dementia-specific care units (DSCUs) have proliferated in AL.2 The “success” of DSCUs in nursing homes (NHs) have been inconclusive;3 less is known about the benefits of DSCUs in AL. Two studies have suggested that there are few differences in terms of dementia care components, quality of life (QOL), or 1-year health and functional outcomes between AL residents in DSCUs and those in NDSCUs.4, 5 In these exploratory analyses, clinical characteristics, dementia care indicators, and outcomes of AL residents with dementia living in DSCUs or NDSCUs were compared. These are data from the Maryland Assisted Living Study (MD-AL).1 Twenty-two AL facilities (ALFs), 10 large (≥16 beds) and 12 small (<16 beds), were randomly selected from all licensed and pending license ALFs within central Maryland. Of these, four were DSCUs (self-identified themselves as a dementia care or Alzheimer's facility or area): one small dementia-specific ALF and three dementia-specific areas located within large non–dementia-specific ALFs. Fifteen residents were randomly selected according to room number from each large facility, regardless of DSCU designation. Residents in DSCUs were included if their room number was selected. All residents of the small facilities were asked to participate (including the dementia-specific ALF). Of the 198 residents enrolled, this analysis includes only the 134 residents who had dementia:1 110 (82%) in NDSCUs and 24 (18%) in DSCUs. All 22 ALFs were represented in the study sample. As previously described,1 residents received comprehensive dementia assessments and quantitative measures for cognition, function, medical comorbidity, neuropsychiatric symptoms, caregiver activity, and QOL. A consensus panel adjudicated dementia diagnosis, and adequacy of dementia examination and treatment (complete vs incomplete) was rated in dementia cases.1 Acetylcholinesterase inhibitor (ACI) and psychotropic drug use was obtained according to chart review. Caregiver burden and time spent in group activities and watching television were estimated from single-response items. Semiannual vital status surveillance was conducted. Survival time was defined as time from study assessment to an event (e.g., discharge to a more-intensive care level) or censor (discharge to another AL or home, death in AL, or the end of observation). Group differences in assessment variables are in Table 1. DSCU residents were more likely to be white (P=.05), have more education (P=.03), and to have higher monthly charges (P<.001). DSCU residents were more cognitively impaired (P=.04) but not more functionally impaired (P=.13) or more medically ill (P=.36) and did not require more caregiver time (P=.10). Group differences in overall behavioral disturbances on the Neuropsychiatric Inventory total did not reach statistical significance (P=.09), but DSCU residents had significantly more anxiety (P=.05) and aberrant motor behavior (P=.03). Consensus panel ratings of complete dementia examination (P=.25) and treatment (P=.84) did not differ between groups. ACIs were used more frequently in DSCU residents (P=.02), whereas there was no difference in psychotropic use (54.1% vs 52.7%, P=.90). DSCU residents spent approximately 32 more hours in group activities (P<.001) and nearly half as many hours per month watching television (P=.05), although this was not statistically significant. QOL (P=.37) and caregiver burden ratings (P=.87) did not differ between groups. Fifty percent (12/24) of DSCU residents, compared with 51% (55/107) of NDSCU residents, were discharged to a more-intensive care level. Although DSCU residents had a longer median survival time of approximately 3 months (80 days) than NDSCU residents, it was not statistically significant (chi-square(1)=0.074, P=.78). DSCU residents were more cognitively impaired and had more behavioral disturbances but were not more likely to be taking psychotropic drugs. DSCU residents were also more likely to be taking ACIs and to spend more time in group activities. DSCU residents had comparable QOL, nursing home discharge risk, and perceived caregiver burden, which corroborates earlier reports.4 Furthermore, DSCU residents were charged more per month, consistent with industry surveys.6, 7 Presumably, these costs result from specialized programming, staffing, and physical features. The study limitations include its exploratory nature, small sample size, nonrandom assignment to unit type, lack of environmental and staff data, and limited generalizability of findings. This exploratory study suggested few differences in dementia care indicators, although the finding of greater cognitive impairment and behavior disturbances with similar levels of QOL and higher levels of activity suggest potential benefits of the DSCU, especially because strong associations were previously reported between more behavioral disturbances and poorer QOL.8, 9 Considering the rapid growth of DSCUs in AL and the substantial cost differential, more-comprehensive research is well warranted. We are grateful to the MD-AL study team for their fieldwork in evaluating participants. We wish to thank study participants, their families, the management and staff of participating AL facilities, and the staff at Copper Ridge for their dedication and assistance in the development and implementation of the study. Conflict of Interest Dr. Rabins has an ownership interest in DEMeasure. DEMeasure holds the copyright for the Alzheimer's disease–related QOL (ADRQL) measure used in this study. Under an agreement between DEMeasure and Dr. Peter V. Rabins, Dr. Rabins is entitled to a share of fees received from sales of the questionnaire and scale. Neither the company nor Dr. Rabins received a share of fees received from questionnaires used in this study. Dr. Lyketsos has received grant support (research or continuing medical education) from Forest, Glaxo-Smith Kline, Eisai, Pfizer, Astra-Zeneca, Lilly, Ortho-McNeil, Bristol-Myers, and Novartis and is an adviser for Astra-Zeneca, Glaxo-Smith Kline, and Supernus. Dr. Rosenblatt serves on the speaker's bureau for Pfizer. Supported by Grant R01MH60626 from the National Institute of Mental Health and the National Institute on Aging. Author Contributions: Drs. Rosenblatt, Lyketsos, Brandt, and Rabins played a role in study concept, acquisition of subjects and data, analysis and interpretation of data, and preparation of the manuscript. Drs. Samus, Onyike, Baker, and McNabney played a role in acquisition of subjects and data, analysis and interpretation of data, and preparation of the manuscript. Dr. Mayer played a role in analysis and interpretation of data and preparation of the manuscript. Sponsor's Role: The sponsor (NIMH and NIA) played no role in the design, methods, subject recruitment, data collection, analysis, or preparation of the manuscript.
Sexuality and sexual behaviors in people with dementia living in long-term care facilities can pose major challenges to those charged with their care. Although there are several published studies on staff attitudes toward sexual expression and behaviors in residents, there has been little published on types and circumstances of these behaviors. The purpose of the study was to: 1) to understand what types of behaviors in a residential dementia care facility were labeled as “sexually inappropriate”; 2) to discern any identifiable patterns among behavior types; and 3) to determine whether behavior types corresponded to dementia diagnosis or other resident characteristics.
Given recent evidence that activity participation may reduce functional decline, the effect of activity on resident ability to remain in assisted living (AL) is of interest. This study examines the relationship between participation in activities and the length of time residents remain in AL.
Anxiety is a distressing experience at any age but may be particularly disabling when coupled with dementia. Dementia-related anxiety is associated with a range of additional problems among community-dwelling older adults, but little is known about its occurrence in assisted living environments. The purpose of this article is to describe the prevalence of anxiety symptoms among older adults who participated in Phase I of the Maryland Assisted Living Study, a cross-sectional study of 198 participants who underwent comprehensive dementia evaluations. Participants with dementia diagnoses (n=134) were compared with those without dementia (n=64) using two measures of anxiety. Anxiety was common in both groups: 22% of each group were assessed to have one or more anxiety symptoms using proxyrated methods, and 45% had at least mild anxiety using direct observation and interview. Factors that contribute to variability in reports of dementia-related anxiety are reviewed.
To describe medication usage in nursing home residents with advanced dementia, to identify how this usage changed as patients advanced towards death, and to identify correlates of increased medication usage.
Background: Although increasing numbers of older adults are living in assisted living facilities, there is little information on the types and amount of chronic medical illness and the medications required by such residents. To better inform efforts to optimize care in this setting, we sought to quantify chronic medical illnesses and their treatment.Methods: Medical diagnoses and treatments were derived from chart reviews and interviews of 198 residents of 22 randomly selected assisted living facilities (AL) in central Maryland. To evaluate the burden of medical illnesses, chronic conditions were categorized and quantified according to general (organ system) diseases, as well as 7 specific long-term care Clinical Practice Guidelines (CPG). Using logistic regression, we calculated the associations between facility-level characteristics and those residents with a) conditions from 3 or more general disease categories and, b) 2 or more CPG conditions. To evaluate medical treatment complexity, we categorized oral and certain non-oral medications, as well medications that typically require additional monitoring.Results: Almost one-half (46%) of AL residents had chronic conditions in 3 or more different general disease categories and one-fourth (25.2%) had 2 or more specific Clinical Practice Guideline (CPG) conditions. Residents with chronic conditions in 3 or more different general disease groups were more likely to live in larger facilities; otherwise, no other facility-level characteristics that we assessed were associated with residents having conditions from 3 or more general disease categories or 2 or more CPG conditions. One-half of all residents were taking medications that typically require additional monitoring and 25% of residents were receiving treatments of respiratory inhalers, eye drops and/or injections.Conclusions: Many AL residents have multiple medical illnesses of different types and complexity. Given the increasing role of AL providers in the management of such conditions, appropriate adjustments in care provision will be needed for facilities to meet the needs of these residents.
OBJECTIVES:To describe patterns of Acetylcholinesterase inhibitor (ACI) use in an Assisted Living (AL) population, and the association of ACIs with retention in AL. METHODS:As part of the Maryland Assisted Living Study (MD-AL), 198 residents of 22 ALs were evaluated. Dementia was diagnosed in 134, and specifically Alzheimer's disease (AD) in 79, by an expert consensus panel. Data was collected on ACI agent and dose. Vital status and location were recorded every 6 months. Other data included age, duration of residence, general medical health rating (GHMR), Mini-Mental State Examination (MMSE), Neuropsychiatric Inventory (NPI), Cornell Scale for Depression in Dementia (CSDD) and number of non-psychiatric medications. RESULTS:The overall ACI treatment rate was 31%. 34.5% of participants with mild to moderate AD were taking ACIs. Only two in seven participants taking rivastigmine were taking an adequate dose. Participants with AD on ACI's did not differ significantly from those not on ACI's in any of the secondary measures except age and duration of residence, those on the agents being somewhat younger and more recently admitted. For participants with AD, only ACI use was significantly associated with retention in AL at 6 months, with a relative risk of death or discharge to higher level care of 0.217. Baseline MMSE was associated with retention for those with non-AD dementia. In a survival analysis ACI use was associated with 228.75 days longer retention in participants with AD. CONCLUSION:ACIs have low rates of use in AL and are associated with better retention for residents with AD.
OBJECTIVES: To estimate the association between dementia and time to discharge from individual assisted living (AL) facilities and examine, in residents with dementia, factors associated with shorter duration of residence in individual AL facilities.DESIGN: Prospective cohort study.SETTING: Twenty-two AL facilities in central Maryland.PARTICIPANTS: Stratified random sample of 198 AL residents followed for a median of 18 months.MEASUREMENTS: Detailed assessments to diagnose dementia; assess treatment of dementia; and rate clinical; cognitive, functional, and quality-of-life measures.RESULTS: Residents with dementia remained in a facility 209 fewer days at the median (P=.001) than residents without dementia. After adjustment for other variables, lack of treatment for dementia (P=.01) and more-serious medical comorbidity (P=.02) were associated with earlier discharge in participants with dementia. Impaired mobility and limited activity participation had weaker associations with earlier time to discharge.CONCLUSION: Dementia may accelerate time to discharge, and its treatment may attenuate this effect. The hypothesis that the detection and treatment of dementia might delay discharge from AL should be tested in randomized trials.
Objective To estimate the frequency and correlates of insomnia and daytime sleepiness among people with dementia in AL facilities.Methods Participants were randomly selected from 22 different assisted living facilities in Maryland. A total of 124 dementia participants were included in the analysis. All participants were rated on an 11-item sleep questionnaire regarding insomnia and daytime sleepiness.Results Sleep disturbance was present in 59.2% of people with dementia. Of the total sample, 21.8% had insomnia only (IN); 21.6% had excessive daytime sleepiness only (DS); and 16.8% had both IN and DS. 40.8% had no sleep disturbance. IN and DS scores were not significantly associated with each other (r=0.07, p=0.43). Of those in the IN group, the majority had mild and moderate dementia and of those in the DS only group the majority had severe dementia. Those with IN only performed the best and DS only performed the worst on both cognitive measures (the Mini Mental State Examination) (F=3.26, p=0.014), and on physical measures (the physical subscale of the psychogeraitric dependency rating scale) (F=6.09, p < 0.001). There was no significant difference between the groups on the Cornell scale for depression in dementia.Conclusion The frequency of insomnia and daytime sleepiness in dementia subjects in AL is similar to that found in nursing homes. Daytime sleepiness is associated with poorer cognitive and day-to-day functioning. Effective management of DS may lead to improved functioning in the AL residents. Insomnia is associated with the best outcomes, even better than those with no sleep disturbance. This finding needs to be replicated. Copyright (c) 2007 John Wiley & Sons, Ltd.
Objectives To compare the demographic, clinical, and psychiatric characteristics of residents living in small (<= 15 beds) and large assisted living (AL) facilities in the United States.Methods One hundred and ninety-eight residents in 10 large and 12 small assisted living facilities were comprehensively assessed as part of the Maryland Assisted Living Study (MD-AL). The presence or absence of dementia and psychiatric disturbances and the facilities' recognition and management of these disorders were compared across the two types of AL. Aspects of care delivery were also compared.Results Small facilities had a higher prevalence of dementia (81%) compared to larger facilities (63%) and the mean MiniMental State Examination (MMSE) across all residents in small facilities (mean 13.04) was than in large facilities (mean 19.93)(p=0.000). Almost all (98%) of the residents of small homes carried a diagnosis of a dementia or other psychiatric diagnosis, compared to 74% of residents in large facilities (p < 0.001). Psychosis in particular was more prevalent in the smaller homes and the mean Neuropsychiatric Inventory score, a measure of neuropsychiatric symptoms, was higher compared to large homes. Falls were more common in larger homes despite a greater number of personal care hours per week. The use of safety devices and restraints was significantly less common in large facilities compared to smaller homes, where 'geri-chair' and bedrails were more often used.Conclusions Rates of dementia and psychiatric disorder differ in assisted living facilities depending on size of facility. Copyright (c) 2006 John Wiley & Sons, Ltd.
We used a cross-sectional study to examine the correlates of caregiver-rated quality of life (QOL) in 198 randomly selected residents from a stratified random sample of 22 assisted living facilities in central Maryland. We measured QOL by using the Alzheimer's Disease-Related Quality of Life Questionnaire. In general, despite cognitive impairment, residents in assisted living were rated as having a high QOL. In a multivariate regression, we found that nonmood neuropsychiatric symptoms were the strongest correlate of QOL, explaining 37% of the variance. Depressive symptoms, functional dependence, marital status, and cognition also contributed to the model, but only minimally. Because of the strong association of neuropsychiatric symptoms with QOL, special attention should be given to their recognition and amelioration.
This study describes the health problems and comorbid illnesses of nursing home (NH) residents with advanced dementia (n=123) and identifies correlates of staff-identified pain. Study participants were residents of 3 NHs in Maryland, their surrogate decision makers and their physicians. Residents' cognitive function was assessed at study enrollment, and their medical records were reviewed to identify all health problems/illnesses and use of pain medications during the 6 months before their enrollment. The most prevalent health problems were skin problems (95%), nutrition/hydration problems (85%), psychiatric/behavioral problems (85%), gastrointestinal problems (81%), and infections (80%). Sixty-three percent of residents had recognized pain, and 95% of those residents received pain medications. In a multivariate regression analysis, staff-identified pain was associated with aspiration (P=0.008), peripheral vascular disease (P=0.021), musculoskeletal disorders (P=0.032), higher cognitive function (P=0.013), and use of pain medications, including nonopiates (P=0.004) and the combination of opiates and nonopiates (P=0.001). NH residents with advanced dementia experience a complex mixture of multiple chronic and acute comorbidities. These results suggest the need for clinicians in long-term care facilities to be vigilant in assessing and treating pain, particularly as cognitive function declines in those with advanced dementia.