Assisted Living Residents Research Articles

Association Between Organizational Context and Resident Pain in Assisted Living: A Repeated Cross-Sectional Study.

Resident pain has been a common quality challenge in congregate care for older adults, and organizational context may explain variations in resident pain beyond resident-level factors. Most studies have focused on nursing homes (NHs), largely neglecting assisted living (AL). AL residents are at similar risk for pain as NH resident, but with AL providing fewer services and staffing resources. Our objective was to examine whether organizational context in AL was associated with resident pain during the first two waves of the COVID-19 pandemic. This repeated cross-sectional study linked AL home surveys, collected in COVID-19 waves 1 (March-June 2020) and 2 (October 2020-February 2021) from a key contact, to administrative Resident Assessment Instrument-Home Care (RAI-HC) records in these homes. Surveys assessed preparedness for COVID-19 outbreaks, availability of a registered nurse or nurse practitioner, direct care staff shortages, decreased staff morale, COVID-19 outbreaks, confinement of residents to their rooms, supporting video calls with physicians, facilitating caregiver involvement. The dependent variable (moderate daily pain or pain of a severe intensity) and resident covariates came from the RAI-HC. Using general estimating equations, adjusted for repeated resident assessments and covariates, we assessed whether AL organizational context was associated with resident pain during the pandemic. We included 985 residents in 41 facilities (wave 1), and 1134 residents in 42 facilities (wave 2). Pain prevalence [95% confidence interval] decreased non-significantly from 20.6% [18.6%-23.2%] (March-June 2019) to 19.1% [16.9%-21.6%] (October 2020-February 2021). Better preparedness (odds ratio=1.383 [1.025-1.866]), confinement of residents to their rooms (OR=1.616 [1.212-2.155]), availability of a nurse practitioner (OR=0.761 [0.591-0.981]), and staff shortages (OR=0.684 [0.527-0.888]) were associated with resident pain. AL organizational context factors were associated with resident pain. Policy and management interventions can and must address such factors, providing potentially powerful levers for improving AL resident quality of care.

Residency in Long-Term Care Facilities: An Important Risk Factor for RSV Hospitalization.

Older age and comorbid conditions increase risk for severe RSV. Skilled nursing (SNF) and assisted living (AL) facilities represent an intersection of risk factors. In a 3-year prospective study (Rochester, NY) we compared population-based incidence of RSV-associated hospitalization for community-dwelling, SNF and AL adults ≥65 years. Median age was 76, 83 and 86 years, respectively, and dementia and CHF more prevalent among SNF and assisted living residents. Average annual incidence was 117 (95%CI:104-132), 440 (95%CI:307-629) and 740/100,000 persons (95%CI:523-1045) for community-dwelling, SNF and AL adults ≥65 years, respectively, demonstrating need for unequivocal RSV vaccine recommendations in SNF and AL residents.

Evacuation and Health Care Outcomes Among Assisted Living Residents After Hurricane Irma

Evacuation has been found to be associated with adverse outcomes among nursing home residents during hurricanes, but the outcomes for assisted living (AL) residents remain unknown. To examine the association between evacuation and health care outcomes (ie, emergency department visits, hospitalizations, mortality, and nursing home visits) among Florida AL residents exposed to Hurricane Irma. Retrospective cohort study using 2017 Medicare claims data. Participants were a cohort of Florida AL residents who were aged 65 years or older, enrolled in Medicare fee-for-service, and resided in 9-digit zip codes corresponding to US assisted living communities with 25 or more beds on September 10, 2017, the day of Hurricane Irma's landfall. Propensity score matching was used to match evacuated residents to those that sheltered-in-place based on resident and AL characteristics. Data were analyzed from September 2022 to February 2024. Whether the AL community evacuated or sheltered-in-place before Hurricane Irma made landfall. Thirty- and 90-day emergency department visits, hospitalizations, mortality, and nursing home admissions. The study cohort included 25 130 Florida AL residents (mean [SD] age 81 [9] years); 3402 (13.5%) evacuated and 21 728 (86.5%) did not evacuate. The evacuated group had 2223 women (65.3%), and the group that sheltered-in-place had 14 556 women (67.0%). In the evacuated group, 42 residents (1.2%) were Black, 93 (2.7%) were Hispanic, and 3225 (94.8%) were White. In the group that sheltered in place, 490 residents (2.3%) were Black, 707 (3.3%) were Hispanic, and 20 212 (93.0%) were White. After 1:4 propensity score matching, when compared with sheltering-in-place, evacuation was associated with a 16% greater odds of emergency department visits (adjusted odds ratio [AOR], 1.16; 95% CI, 1.01-1.33; P = .04) and 51% greater odds of nursing home visits (AOR, 1.51; 95% CI, 1.14-2.00; P = .01) within 30 days of Hurricane Irma's landfall. Hospitalization and mortality did not vary significantly by evacuation status within 30 or 90 days after the landfall date. In this cohort study of Florida AL residents, there was an increased risk of nursing home and emergency department visits within 30 days of Hurricane Irma's landfall among residents from communities that evacuated before the storm when compared with residents from communities that sheltered-in-place. The stress and disruption caused by evacuation may yield poorer immediate health outcomes after a major storm for AL residents. Therefore, the potential benefits and harms of evacuating vs sheltering-in-place must be carefully considered when developing emergency planning and response.

Assisted living residents with dementia: Disparities in mental health services pre and during COVID-19.

Little is known about mental health among Medicare beneficiaries with Alzheimer's disease or related dementias (ADRD) who reside in assisted living (AL) communities. The COVID-19 pandemic may have curtailed ambulatory care access for these residents, but telehealth may have expanded it. We examined in-person and telehealth use of ambulatory mental health visits among AL residents with ADRD, pre and during the COVID pandemic, focusing on race/ethnicity and Medicare/Medicaid dual status. A CY2018 cohort of AL residents with ADRD was identified. Outcome was any quarterly in-person or telemedicine mental health visit based on national CY2019-2020 Medicare claims. Key independent variables were individual race/ethnicity and dual status and the AL-level proportion of dual residents. We estimated a linear probability model with random effects and robust standard errors. Quarterly indicators captured service use before and after the onset of the pandemic. The study included 102,758 fee-for-service Medicare beneficiaries with ADRD in 13,400 ALs. One in five residents had any mental health visits prior to the COVID-19 pandemic. Black residents, and those with dual Medicare/Medicaid eligibility, were significantly less likely to use mental health services prior to and during the pandemic. There were no significant differences in visits via telemedicine by race/ethnicity or individual dual status. Residents in AL communities with a higher proportion of duals had a lower likelihood of visits before and during the pandemic. Mental health service use among AL residents with ADRD was low and declining prior to the pandemic. Telehealth allowed for mental health visits to continue during the pandemic, albeit at a lower level. Residents in ALs with a higher proportion of duals were less likely to have in-person or telehealth visits. The results suggest that some ALs may find it difficult to assure mental health service provision to this vulnerable population.

Serious Mental Illness in Assisted Living Communities: Association with Nursing Home Placement

ObjectivesAssess prevalence of serious mental illness (SMI) alone, and co-occurring with Alzheimer disease and related dementias (ADRD), among Medicare beneficiaries in assisted living (AL). Examine the association between permanent nursing home (NH) placement and SMI, among residents with and without ADRD. Design2018-2019 retrospective cohort of Medicare beneficiaries in AL. Residents were followed for up to 2 years to track their NH placement. We used data from the Medicare Enrollment Database, the Medicare Beneficiary Summary File, Minimum Data Set, and a national directory of state-licensed AL communities. AL residents were identified using a validated, previously reported 9-digit zip code methodology. Setting and ParticipantsA cross-sectional study sample included 289,350 Medicare beneficiaries in 17,265 AL communities across 50 states and in the District of Columbia. MethodsThe outcome was permanent NH placement: a continuous stay for more than 90 days. Key independent variable was presence of SMI—schizophrenia, bipolar disorder, and major depression. Other covariates included sociodemographic factors and presence of other chronic conditions, including ADRD. A linear probability model with robust SEs, and AL-level random effects, was used to test the association between SMI diagnoses, ADRD, and their interactions on NH placement. ResultsMore than half (55.65%) of AL residents had a diagnosis of SMI, among them 93.2% had major depression, 28.5% schizophrenia, and 22.2% bipolar disorder. Individuals with schizophrenia and bipolar disorder had a significantly lower probability of NH placement, a 32% and a 15% decrease relative to the cohort mean, respectively. Placement risk was significantly greater for residents with ADRD compared to those without, increasing for those who also had schizophrenia or bipolar disorder, 12.9% and 1.5% relative to the sample mean, respectively. Conclusion and ImplicationsPresence of schizophrenia and bipolar disorder, in conjunction with ADRD, significantly increases the risk of long-term NH placement, suggesting that ALs may not be well prepared to care for these residents.

Hospice providers serving assisted living residents: Association of higher volume with lower quality.

Assisted living (AL) community caregivers are known to report lower quality of hospice care. However, little is known about hospice providers serving AL residents and factors that may contribute to, and explain, differences in quality. We examined the association between hospice providers' AL patient-day volume and their quality ratings based on Hospice Item Set (HIS) and Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Surveys. This cross-sectional study employed information from the Medicare Compare website and Medicare claims data. Medicare-eligible AL residents were identified using previously validated methods and merged with hospice claims. Linear probability models adjusting for county fixed effects were used to examine the association between hospice provider AL volume, measured as the share of annual hospice patient days from AL residents, and quality measures obtained from HIS and CAHPS. Models controlled for hospice providers' profit status and daily patient census. Higher AL-volume hospice providers were 7 percentage points more likely to have caregivers reporting lower median scores on domains of pain assessment, dyspnea treatment, and emotional support. Their caregivers also reported lower scores in team communications and training family to provide care. Higher AL-volume hospice providers also were 5 percentage points less likely to get higher aggregated scores from all CAHPS domains and 7 percentage points less likely to have higher HIS composite scores. Hospice providers serving higher volumes of AL patient days had lower quality scores. In order to identify targeted opportunities for quality improvement, research is needed to understand why lower quality providers are concentrated in the AL market.

Accelerometer-measured physical activity and posture among older adults in assisted-living residences.

Few studies have detailed the physical activity and postural patterns (e.g. lying or sitting) in older adults with declining activities of daily living (ADL). Therefore, we aimed to address this issue by quantifying physical activity using an accelerometer and measuring time spent in various postures among older adults in assisted-living residences. We quantified physical activity using an accelerometer (ActivPAL) and measured time spent in various postures in 35 older adults (mean age: 89.1 years) with chronic conditions residing in two assisted-living residences in Japan. ActivPAL was attached to the thigh and trunk of patients to distinguish between sitting and lying postures. Participants had a mean count of 6.2 comorbidities, and they were divided into three groups (fully independent, requiring minimal assistance and requiring care) based on their activities of daily living capacity using the Barthel Index. Residents aged ⩾90 years walked a mean of 1109.1 steps and spent 167.3 min upright per day. Fully independent participants walked a mean of 3587.6 steps daily; those requiring minimal assistance walked 1681.0 steps daily; and those requiring care walked 428.9 steps daily. Our findings indicated that step count, number of sit-to-stand transitions, stepping time, and upright time decreased significantly as activities of daily living capacity decreased. Comorbidity type and number of comorbidities were not related to their lying time except for depression status. Lying time was associated with depression status.

Comparison of hospitalization events among residents of assisted living and nursing homes during COVID-19: Do settings respond differently during public health crises?

COVID-19 and resulting health system and policy decisions led to significant changes in healthcare use by nursing homes (NH) residents. It is unclear whether healthcare outcomes were similarly affected among older adults in assisted living (AL). This study compared hospitalization events in AL and NHs during COVID-19 pandemic waves 1 through 4, relative to historical periods. This was a population-based, repeated cross-sectional study using linked clinical and health administrative databases (January 2018 to December 2021) for residents of all publicly subsidized AL and NH settings in Alberta, Canada. Setting-specific monthly cohorts were derived for pandemic (starting March 1, 2020) and comparable historical (2018/2019 combined) periods. Monthly rates (per 100 person-days) of all-cause hospitalization, hospitalization with delayed discharge, and hospitalization with death were plotted and rate ratios (RR) estimated for period (pandemic wave vs historical comparison), setting (AL vs NH) and period-setting interactions, using Poisson regression with generalized estimating equations, adjusting for resident and home characteristics. On March 1, 2020, there were 9,485 AL and 14,319 NH residents, comparable in age (mean 81 years), sex (>60% female) and dementia prevalence (58-62%). All-cause hospitalization rates declined in both settings during waves 1 (AL: adjusted RR 0.60, 95%CI 0.51-0.71; NH: 0.74, 0.64-0.85) and 4 (AL: 0.76, 0.66-0.88; NH: 0.65, 0.56-0.75) but unlike NHs, AL rates were not significantly lower during wave 2 (and increased 27% vs NH, January 2021). Hospitalization with delayed discharge increased in NHs only (during and immediately after wave 1). Both settings showed a significant increase in hospitalization with death in wave 2, this increase was larger and persisted longer for AL. Pandemic-related changes in hospitalization events differed for AL and NH residents and by wave, suggesting unique system and setting factors driving healthcare use and outcomes in these settings in response to this external stress.

A Collaborative Approach to Improving Care Outcomes for Residents in Assisted Living.

Purpose: Assisted Living (AL) residents are embedded in "care convoys" comprised of a dynamic network of formal and informal care partners. Using the convoys of care model-a multi-level framework connecting care convoy properties to resident outcomes-we examined healthcare management and communication between convoy members. We recommend strategies to engage primary care in supporting collaboration, communication, and consensus-building for older adults and their convoys. Methods: Data were collected from the longitudinal study, Convoys of Care: Developing Collaborative Care Partnerships in AL. Fifty residents and their care convoy members (N = 169) were followed in eight AL homes in Georgia over 2 years. Original data were analyzed using Grounded Theory Methods of qualitative data, including formal and informal interviewing, participant observation, and record review. Results: The convoys of care model provide an innovative perspective that will assist providers in supporting AL residents and their care partners to achieve better care outcomes. Findings demonstrate the utility of understanding the structure and function of social resources and implications for improving healthcare outcomes. Conclusion: This research informs the work of physicians and mid-level providers with patients in AL by providing strategies to uncover specific social determinants of health. Recommendations for use in patient encounters are enumerated.

Impact of a Virtual Game, 'Name That Band,' on Older People's and PharmD Students' Feelings of Social Isolation During COVID-19.

Background Prior to the COVID-19 pandemic, PharmD students at the University of Arizona (UArizona) had a long-standing relationship with the older people at St. Luke's Home, a local Eden Alternative assisted-living community. Hosting community engagement programs for assisted-living residents was challenging with COVID-19 precautions and older individuals suffering from social isolation and loneliness. Objective To determine the impact of playing a virtual game, 'Name That Band,' on older people's and PharmD students' feelings of social isolation during the COVID-19 pandemic. Methods Questionnaires were administered before and after a virtual game to residents at St. Luke's Home and PharmD students at UArizona. Participants were asked about their mood before COVID-19 and pre-and postgame, as well as their social interactions and feelings of loneliness using the Modified UCLA Three-Item Loneliness Scale, which assesses a composite score of lack of companionship, feelings of being left out, and isolation. Results Fifteen older people and 11 students participated in the game (N = 26). All participants completed the pregame survey and 25 completed the postgame survey. The older people reported fewer feelings of isolation and loneliness (measured by a reduction in UCLA Loneliness Scale score) postgame compared with pregame. The students reported a higher total UCLA Loneliness Scale score during the pandemic than prepandemic, but there was no difference in their scores postgame compared with pregame. More older people and students reported feeling 'happy' after playing the virtual game together compared with before the pandemic and before playing. The aspect of the activity that helped older people and students feel more socially engaged was playing a game. Conclusion A social intervention using a virtual game may be a tool that can be used to decrease feelings of isolation and increase engagement for older people residing in an assisted-living community.

THE IMPACT OF COVID-19 ON RESIDENTS AND FAMILY/FRIEND CAREGIVERS IN ASSISTED LIVING HOMES

Abstract Healthcare reforms have neglected assisted living (AL) and nursing homes (NHs) for decades, setting them up for the excessive rates of death and suffering during COVID-19. Research before and during the pandemic has primarily focused on NHs, largely overlooking AL. AL is rapidly expanding, caring for people with similar vulnerabilities as those in NHs, yet is less regulated, offers fewer services, has lower staffing/skill mix levels and requires significant family/friend involvement in care. This symposium presents a program of research (COVCARES, COVID-19 and the Care of Assisted living Residents), aiming to understand how the pandemic has impacted AL resident, family/friend, and facility outcomes, and how resident outcomes compare between NHs and AL. Our research started over a decade ago with the first population-based cohort study comparing AL and NHs in Canada. Our current research includes repeated surveys (10/2020–04/2021 and 07/2021–09/2021) with family/friend caregivers and AL facilities, and population-based clinical and health administrative data (2017-2021) from AL and NH residents in Western Canada. Five presentations will report on the design/methods/goals of COVCARES (#1), the impact of the pandemic on family/friend involvement in AL resident care (#2), impacted of the pandemic on psychotropic drug prescriptions in AL (#3), and the association of AL home preparedness for and response to the pandemic on resident pain (#4) and loneliness (#5). Our discussant (Anna Beeber) will highlight similarities and differences between AL and NHs, similarities and differences in both settings between the US and Canada, and how policymakers can account for these differences.

COVID-19 AND THE CARE OF ASSISTED LIVING RESIDENTS: THE COVCARES PROGRAM OF RESEARCH

Abstract This presentation describes the goals, design and methods of the COVID-19 and the Care of Assisted living Residents (COVCARES) program of research. Our goals were to address critical knowledge gaps related to how COVID-19 impacted assisted living (AL) residents, family/friend caregivers, and homes, and to compare how outcomes differed between AL and nursing homes (NH). Partnering closely with provincial Alzheimer Societies, family caregiver advocates, and health policy decision makers, we conducted two interconnected studies: The first was a prospective cohort study, surveying family/friend caregivers of AL residents and directors of care of AL homes in the Canadian provinces of Alberta and British Columbia twice (10/2020–04/2021 and 07/2021–09/2021). 673 caregivers and 104 AL homes responded to our first survey. Of those, 386 caregivers and 78 AL homes submitted a second survey. The second was a population-based retrospective cohort study (01/2017–12/2021), using clinical and health administrative data of all AL and NH residents in Alberta. Data included Resident Assessment Instrument (RAI) records, acute care and emergency department admission data, prescription medications, data on COVID-19 infections, and vital statistics of 23,355 AL residents and 41,583 NH residents. Analyzing each of the aforementioned data sets individually, and linking family and facility surveys, as well as resident and facility survey data, we provide unique insights into the impacts of the COVID-19 pandemic on AL settings. The presentations in this symposium will share selected key findings from our program of research.

ASSISTED LIVING ADMINISTRATORS’ UNDERSTANDING OF REGULATORY REQUIREMENTS IN SEVEN STATES

Abstract Each state requires assisted living (AL) residences to employ an administrator whose job responsibilities include oversight of resident care, managing staff, and regulatory compliance. This study surveyed administrators of 151 AL residences in 7 states. These AL residences reflect 28 license types (e.g., based on level of care, dementia care services). Administrators were asked whether there were any regulations, policies or procedures that required their AL to do any of 11 health-related activities (e.g., staff able to check vital signs, advance directive on file, reporting change in condition to resident’s healthcare provider). Using health services regulatory analysis, we documented the applicable regulations for each of the 151 AL residences, then assessed whether administrator responses were congruent with the licensed requirements. Almost all (95%) administrators of AL residences governed by a licensure requirement regarding change in condition reported this policy in their residence. In contrast, less than half (48%) of administrators who work in an AL in our sample that state law requires to keep an advance directive on file for residents reported that they did not have a policy to do so. Over one-third (37%) of administrators who work in an AL required to have a policy of non-pharmaceutical treatment for residents with dementia said that they did not have this policy in place. Some administrators reported the presence of policies in the absence of state requirements, suggesting that these AL residences exceed minimum requirements. These results vary by AL license type both within and across states.

COVID-19 AND PSYCHOTROPIC DRUG USE IN ASSISTED LIVING RESIDENTS: VARIATION BY WAVE AND SETTING TYPE

Abstract The onset of COVID-19 was associated with significant, albeit modest, increases in the use of psychotropics and opioids in nursing home residents. Little research exists on whether similar trends occurred among older residents of publicly funded assisted living (AL) homes, a growing and poorly investigated setting. We examined the impact of pandemic wave (1 to 4) and setting type (dementia designated spaces [AL-D] vs other [AL-O]) on prevalent antipsychotic, antidepressant, benzodiazepine, opioid and anticonvulsant use in AL residents from Alberta, Canada. Using linked population-based clinical and health administrative databases, we conducted a repeated cross-sectional study of quarterly medication prevalence from January 2018 to December 2021. Log-binomial GEE models estimated prevalence ratios (PR) for 4 waves (vs 2018-19 historical months) and setting (AL-D vs AL-O) and period-setting interactions. On March 1, 2020, there were 2,874 AL-D and 6,611 AL-O residents in our cohorts (mean age 82.4 vs 79.9 years and 93.5% vs 42.6% with dementia, respectively). Antipsychotic prevalence increased during waves 2-4 for both settings but this increase was significantly greater for AL-D than AL-O in later waves (e.g., AL-D: PR 1.21, 95%CI 1.14-1.27; AL-O: 1.12 (1.07-1.17) for March-May 2021 vs 2018-19). For both settings, there was a significant but modest increase in antidepressants but a decrease in benzodiazepines during several waves. No pandemic effect was observed for opioids in either setting. The AL resident and home characteristics associated with these medication trends, concerns about medication risks (particularly for dementia care settings), and consequent health outcomes for residents require further study.

CAREGIVER INVOLVEMENT AND CONCERNS WITH RESIDENT CARE IN ASSISTED LIVING BEFORE AND DURING COVID-19

Abstract Family/friend caregivers are essential in promoting assisted living (AL) residents’ health/well-being, but their involvement was restricted during the COVID-19 pandemic. Care needs in AL are similarly complex as in nursing homes, but fewer staffing resources and services are available. Caregiver involvement and concerns with care of AL residents before and during the COVID-19 pandemic is a critical knowledge gap. This prospective cohort study collected online surveys from caregivers to AL residents in Western Canada. Surveys assessed socio-demographics, ways of visiting or communicating with residents, involvement in care tasks, concerns with resident physical/mental health, perceived lack of resident access to care services, and whether caregivers felt well informed/involved with resident care. Our first survey assessed outcomes in the three months before and after pandemic wave 1 (03/2020), our second survey assessed outcomes in pandemic wave 2 (11/2020 -02/2021). Based on 386 responses, in-person visits dropped significantly in wave 1 (91.5% to 30.6%) and so did caregiver involvement in nearly all care tasks (e.g., toileting: 7.5% to 2.6%, social/recreational activities: 73.6% to 25.7%). While these rates increased in wave 2, most did not return to pre-pandemic levels. Caregiver concerns increased in wave 1 (e.g., concerns about residents’ depressed mood: from 21.3% to 50.3%) and stayed high in wave 2. Concerns were particularly high (e.g., >20% higher for depressed mood) among caregivers who did not feel well informed/involved with resident care. Continued caregiver involvement in resident care and communication with caregivers is key to mitigating caregiver concerns and supporting caregiver and resident well-being.

STATE-LEVEL DESCRIPTION OF MEDICAID POLICY AND ACCESS TO LICENSED ASSISTED LIVING CARE FOR LOW-INCOME ADULTS

Abstract A growing proportion of Medicaid funds are allocated to care in assisted living (AL) settings. However, a state must have a state plan amendment or waiver to utilize these funds. States issue levels of licensure for AL communities, which govern the care and oversight that can be provided and may determine whether ALs can accept Medicaid funding. However, until now, Medicaid coverage for AL has been analyzed at the state level and is not well-documented for license types. Using Medicaid state plans and waiver applications, we describe the types of Medicaid funding mechanisms that states use to finance care in AL and identify the demographics and health characteristics of residents in Medicaid-eligible ALs. We find that five states do not utilize Medicaid to finance care in AL. Among the 45 states and DC with Medicaid-financed AL, 12 states limit Medicaid funding to specific licenses, whereas 34 states provide access to Medicaid-funded care for all AL license types. Among identified ALs, 86% are licensed to accept Medicaid funds. Although the modal funding mechanism is through 1915c waivers, the largest percentage (40%) of ALs licensed to accept Medicaid funding are in states that utilize multiple mechanisms. In states that fund AL through state plan amendments, 88% of Medicare beneficiaries reside in covered ALs; conversely, in states that use 1115 demonstration waivers, 99% of Medicare beneficiaries reside in covered ALs. This work will benefit future research and policymaking aiming to use Medicaid funding to increase access to appropriate, high-quality care in licensed ALs.

Characteristics and End-of-Life Care Pathways of Decedents From a National Cohort of Assisted Living Residents.

Assisted living (AL) is an increasingly common, place of care for dying persons. However, it remains unclear to what extent residents are able to age in place or if AL represents an additional transition before death. Examine the sociodemographic characteristics, comorbidities, health care utilization, and end-of-life care pathways of AL residents before death. A national cohort study of fee-for-service Medicare beneficiaries residing in large AL communities (25+ beds) during the month of January 2017 with 3 years of follow-up, using administrative claims data. 268,812 AL residents. Sociodemographic characteristics, comorbidities, and health care utilization at the end of life. Between 2017 and 2019, 35.1% of the study cohort died. Decedents were more likely than the overall AL population to be 85 years old or older (76.5% vs. 59.5%), and diagnosed with Alzheimer's disease and related dementia (70.3% vs. 51.6%). Most decedents (96.2%) had some presence in AL during the last year of life, but over 1 in 5 left AL before the last month of life. Among those in AL on day 30 before death, nearly half (46.4%) died in place without any health care transition, while 13.2% had 3 or more transfers before dying. AL is an important place of care for dying persons, especially for those with dementia. These findings indicate a need to assess existing policies and processes guiding the care of the frail and vulnerable population of dying AL residents.

“His reality certainly isn’t the reality that we know”: Care partner responses to differing realities among assisted living residents with dementia

AbstractBackgroundIn the United States and elsewhere, assisted living (AL) has become a primary provider of residential long‐term care for persons living with dementia. Residents typically are supported by care convoys, or networks, comprised of their family and friends, AL staff, as well as external care providers, all of whom exert influence on residents’ daily lives. As with other persons living with dementia, AL residents sometimes experience confusion over time, place, and scenario. Care partner responses to these differing realities are consequential to residents’ care experiences, quality of life, and ability to engage with others and in activities they find meaningful. Here, we examine, in‐depth, care partner responses to residents' confusion, the complex factors influencing their reactions, and the resulting outcomes.MethodWe present analysis of qualitative data gathered from the study, “Meaningful Engagement and Quality of Life among Assisted Living Residents with Dementia,” involving six diverse AL communities, each studied for a one‐year period. Researchers conducted 2,109 hours of participant observation captured in detailed fieldnotes. We also followed 59 residents with dementia and 167 of their care partners, conducting interviews to learn how best to promote meaningful engagement. Specifically, we analyzed all data relevant to residents’ “differing realities” and “care partner responses.”ResultCare partners varied in their responses to residents’ differing realities. Some, including many AL staff, routinely attempted to redirect residents by changing the subject and/or physically redirecting (e.g., if a widowed resident was searching for her husband). Certain care partners joined residents by attempting to understand their realities and “going along with them.” A small minority of care partners, mostly family members, ignored or attempted to correct or truth tell. Factors affecting care partner responses included: the nature of resident confusion and associated expressions and a care partner’s role, dementia knowledge and care resources, beliefs, and experiences. Truth‐telling or correcting frequently, though not always, led to frustration, anxiety, and socially withdrawing whereas responses that acknowledged the person’s reality frequently had better resident outcomes.ConclusionFindings have implications for training, practices, and policies aimed at enhancing care interactions and quality of life among persons living with dementia.

Bioethics in Gerontology: Developing a Typology of Ethical Issues in Assisted Living.

Assisted living (AL) simultaneously is home to older adults who cannot live independently and a place where people work and visit and, therefore, where value conflicts are apt to arise. In this report we present the "Typology of Ethical Issues in Assisted Living" with emphasis on its development. The typology derives from a synthesis of frameworks used in acute care spaces adapted and applied to data collected as part of an ethnographic study involving AL residents with dementia. Our work advances knowledge and has implications for future research and practice.

The Natural History of Disability and Caregiving Before and After Long-Term Care Entry

ImportanceMany older persons move into long-term care facilities (LTCFs) due to disability and insufficient home caregiving options. However, the extent of disability and caregiving provided around the time of entry is unknown.ObjectiveTo quantitatively describe disability and caregiving before and after LTCF entry, comparing nursing home (NH), assisted living (AL), and independent living (IL) entrants.Design, Setting, and ParticipantsA longitudinal cohort study using prospectively collected annual data from the National Health and Aging Trends Study from 2011 to 2020 including participants in the continental US. Overall, 932 community-dwelling Medicare beneficiaries entering LTCF from 2011 to 2019 were included. Entry into LTCF was set as t = 0, and participant interviews from 4 years before and 2 years after were used.Main Outcomes and MeasuresPrevalence of severe disability (severe difficulty or dependence in ≥3 activities of daily living), prevalence of caregivers, and median weekly caregiving hours per entrant, using weighted mixed-effects regression against time as linear spline.ResultsAt entry, mean (SD) age was 84 (8.4) years, 609 (64%, all percentages survey weighted) were women, 143 (6%) were Black, 29 (3%) were Hispanic, 30 (4%) were other (other race and ethnicity included American Indian, Asian, Native Hawaiian, and other), and 497 (49%) had dementia. 349 (34%) entered NH, 426 (45%) entered AL, and 157 (21%) entered IL. Overall, NH and AL entry were preceded by months of severe disability and escalating caregiving. Before entry, 49% (95% CI, 29%-68%) of NH entrants and 10% (95% CI, 3%-24%) of AL entrants had severe disability. Most (>97%) had at least a caregiver, but only one-third (NH, 33%; 95% CI, 20%-50%; AL, 33%; 95% CI, 24%-44%) had a paid caregiver. Median care was 27 hours weekly (95% CI, 18-40) in NH entrants and 18 (95% CI, 14-24) in AL entrants. On NH and AL entry, severe disability rose to 89% (95% CI, 82%-94%) and 28% (95% CI, 16%-44%) on NH and AL entry and was 66% (95% CI, 55%-75%) 2 years after entry in AL residents. Few IL entrants (<2%) had severe disability and their median care remained less than 7 hours weekly before and after entry.ConclusionsThis study found that persons often enter NHs and ALs after months of severe disability and substantial help at home, usually from unpaid caregivers. Assisted living residents move when less disabled, but approach levels of disability similar to NH entrants within 2 years. Data may help clinicians understand when home supports approach a breaking point.