Measuring Consumer-Reported Quality of Life Among Recipients of Publicly Funded Home- and Community-Based Services: Implications for Health Equity.

OBJECTIVES: Despite an increased policy focused on home- and community-based services (HCBS), little is known about their quality of life (QoL)-a key measure of person-centered care. This paper addresses this gap by measuring consumers' self-reported QoL and identifying factors associated with disparities in QoL. METHODS: We analyzed the 2015-2016 National Core Indicators-Aging and Disability survey for 3426 respondents in Minnesota, using factor analyses to identify latent QoL domains. Multivariable regression models identified predictors of QoL domains. RESULTS: Factor analyses identified three valid and reliable latent QoL domains: security, self-determination, and care experiences. Younger consumers with disabilities (versus consumers ≥65 years of age), minoritized racial/ethnic groups, consumers with hearing loss, without a spouse/domestic partner, and not living in consumer's own/family home reported significantly lower QoL in various domains (p < .001). DISCUSSION: Disparities in HCBS consumer-reported QoL exist, necessitating equitable reforms to improve HCBS quality for its increasingly diversified consumer base.

Perceptions of Dementia and Dementia Care Among African Immigrants in Minnesota: Insights From Community Conversations.

OBJECTIVES: This qualitative descriptive study explored the perceptions of dementia, dementia care, and caregiving within the African immigrant community. METHODS: Six community conversations (focus groups) were held with 24 participants. Three conversations were led by project advisory board members and utilized a 12-question conversation guide. The recorded conversations were transcribed and analyzed using thematic analysis. RESULTS: Of the 24 African immigrants who participated, 52% were 55-75 years old, 67% identified as female, and 39% were married or cohabitating. Twenty percent were currently providing care to a relative with dementia and 40% had provided care to a relative with dementia in the past. Four themes were identified. These included (1) attitudes toward mental health, illnesses, and poor health, (2) community attitudes toward dementia, and dementia caregiving, (3) barriers to dementia care and caregiving, and (4) current dementia care resources in the African immigrant community. DISCUSSION: The findings show that African immigrant cultural beliefs significantly shape dementia care and caregiving attitudes, preferences, and behavioral practices. African immigrants' cultural backgrounds influence (or have the potential to influence) timely access and engagement in dementia care. And, depending on how deeply held these cultural beliefs are, they could affect dementia care and caregiving both positively and negatively. With the rapidly growing immigrant older adult population, there is a need for systemic strategies to facilitate affordable and culturally responsive dementia care for African immigrants and other minoritized older adults.

Reported Unmet Hearing Aid Need in Older People With Dementia: The US National Core Indicators Survey.

OBJECTIVES: Hearing aids have important health benefits for older adults with Alzheimer disease and related dementias (ADRD); however, hearing aid adoption in this group is low. This study aimed to determine where to target hearing aid interventions for American long-term care recipients with ADRD by examining the association of ADRD and residence type with respondent-reported unmet hearing aid need. DESIGN, SETTING, AND PARTICIPANTS: This cross-sectional study used data from the United States National Core Indicators-Aging and Disabilities survey (2015-2019) for long-term care recipients aged ≥65 years. METHODS: We used multivariable logistic regression to model the likelihood of reporting unmet hearing aid need conditional on ADRD status and residence type (own/family house or apartment, residential care, or nursing facility/home), adjusting for sociodemographic factors and response type (self vs proxy). RESULTS: Of the 25,492 respondents [median (IQR) age, 77 (71, 84) years; 7074 (27.8%) male], 5442 (21.4%) had ADRD and 3659 (14.4%) owned hearing aids. Residence types were 17,004 (66.8%) own/family house or apartment, 4966 (19.5%) residential care, and 3522 (13.8%) nursing home. Among non-hearing aid owners, ADRD [adjusted odds ratio (AOR) 0.90, 95% CI 0.80-1.0] and residence type were associated with respondent-reported unmet hearing aid need. Compared to the nursing home reference group, respondents in their own/family home (AOR 1.85, 95% CI 1.61-2.13) and residential care (AOR 1.30, 95% CI 1.10-1.53) were more likely to report unmet hearing aid need. This pattern was significantly more pronounced in people with ADRD than in those without, stemming from an interaction between ADRD and residence type. CONCLUSIONS AND IMPLICATIONS: American long-term care recipients with ADRD living in their own/family home are more likely to report unmet hearing aid need than those with ADRD in institutional and congregate settings. This information can inform the design and delivery of hearing interventions for older adults with ADRD.

Nursing Home Resident Preferences for Daily Care and Activities: A Latent Class Analysis of National Data.

BACKGROUND AND OBJECTIVES: Uncovering subgroups of nursing home residents sharing similar preference patterns is useful for developing systematic approaches to person-centered care. This study aimed to (i) identify preference patterns among long-stay residents, and (ii) examine the associations of preference patterns with resident and facility characteristics. RESEARCH DESIGN AND METHODS: This study was a national cross-sectional analysis of Minimum Data Set assessments in 2016. Using resident-rated importance for 16 preference items in the Preference Assessment Tool as indicators, we conducted latent class analysis to identify preference patterns and examined their associations with resident and facility characteristics. RESULTS: We identified 4 preference patterns. The high salience group (43.5% of the sample) was the most likely to rate all preferences as important, whereas the low salience group (8.7%) was the least likely. The socially engaged (27.2%) and the socially independent groups (20.6%) featured high importance ratings on social/recreational activities and maintaining privacy/autonomy, respectively. The high salience group reported more favorable physical and sensory function than the other 3 groups and lived in facilities with higher staffing of activity staff. The low salience and socially independent groups reported a higher prevalence of depressive symptoms, whereas the low salience or socially engaged groups reported a higher prevalence of cognitive impairment. Preference patterns also varied by race/ethnicity and gender. DISCUSSION AND IMPLICATIONS: Our study advanced the understanding of within-individual variations in preferences, and the role of individual and environmental factors in shaping preferences. The findings provided implications for providing person-centered care in NHs.

Scoping Literature Review: Experiences of Sexual and Gender Minority Older Adults, With Diagnoses of Dementia, Who Use Residential Long-Term Services and Supports.

The number of sexual and gender minority (SGM) older adults utilizing residential long-term supports and services (LTSS) will increase in the forthcoming decades. Paradoxically, while requiring more LTSS services than their non-SGM counterparts, SGM older adults are less likely to access these services, partly due to fears of discrimination. Furthermore, SGM older adults living with Alzheimer's disease and related dementias (AD/ADRD) present unique challenges and opportunities for LTSS facilities. This article provides a scoping review on the intersection between experiences of SGM older adults with AD/ADRD who use residential LTSS. This review identified three themes: (1) the experiences of discrimination among SGM residents in LTSS facilities, (2) the need for comprehensive staff training in residential LTSS to ensure proper care of SGM populations, and (3) the crucial role of inclusive facility policies. As the number of SGM older adults is expected to increase, further research is necessary.

Racial Differences in Nursing Home Quality of Life Among Residents Living With Alzheimer's Disease and Related Dementias.

ObjectivesAmong nursing home (NH) residents with Alzheimer's disease (AD) and AD-related dementias (AD/ADRD), racial/ethnic disparities in quality of care exist. However, little is known about quality of life (QoL). This study examines racial/ethnic differences in self-reported QoL among NH residents with AD/ADRD. Methods: Validated, in-person QoL surveys from 12,562 long-stay NH residents with AD/ADRD in Minnesota (2012-2015) were linked to Minimum Data Set assessments and facility characteristics. Hierarchical linear models assessed disparities in resident-reported mean QoL score (range, 0-100 points), adjusting for case-mix and facility factors. Results: Compared to White residents, racially/ethnically minoritized residents reported significantly lower total mean QoL scores (75.53 points vs. 80.34 points, p < .001). After adjustment for resident- and facility-level characteristics, significant racial/ethnic differences remained, with large disparities in food enjoyment, attention from staff, and engagement domains. Discussion: Policy changes and practice guidelines are needed to address racial/ethnic disparities in QoL of NH residents with AD/ADRD.

"Going Back in the Closet": Addressing Discrimination Against Sexual and Gender Minority Residents in Long-Term Services and Supports by Providing Culturally Responsive Care.

Sexual and gender minority (SGM) older adults face discrimination in long-term services and supports (LTSS). Yet, SGM older adults use LTSS disproportionately higher relative to their non-SGM counterparts. The discrimination is compounded by existing disparities, resulting in worse health outcomes and well-being for SGM older adults. Guided by socioecological model, we posit that training LTSS staff in SGM responsive care and implementing SGM anti-discrimination policies will be needed to improve care. Considering accessibility and turnover challenges, training should be online, interactive, and easily accessible. Studies that assess interventions for SGM responsive care are needed to guide policy and practice.

Measuring Nursing Home Quality of Life: Validated Measures Are Poorly Correlated With Proxies From MDS and Quality of Life Deficiency Citationsl.

OBJECTIVES: Ensuring quality of life (QoL) is an important goal of person-centered nursing home care. The provision of person-centered care relies on information captured in the Minimum Data Set 3.0 (MDS). It is unclear to what extent MDS items or QoL-related facility deficiency citations correlate with validated measures of nursing home residents' QoL. This study evaluated correlation among MDS items, facility deficiency citations, and residents' QoL from 2 states that currently collect these measures. DESIGN: Cross-sectional study. SETTING AND PARTICIPANTS: A total of 11,487 long-stay residents in 356 facilities in Minnesota and 13,835 long-stay residents in 851 facilities in Ohio in 2015. METHODS: The outcome, QoL, was measured using validated instruments (Minnesota QoL survey and Ohio Resident Satisfaction Survey). Predictor variables included scores for Preference Assessment Tool (Section F), Patient Health Questionnaire-9 (Section D) for depressive symptoms from MDS, and count of QoL-related facility deficiency citations from the Certification and Survey Provider Enhanced Reporting database. Spearman's ranked test assessed correlation between predictor and outcome variables. Mixed effects models evaluated associations of QoL summary scores with predictor variables, adjusting for resident- and facility-level characteristics, accounting for clustering at the facility level. RESULTS: In Minnesota and Ohio, predictor variables (Section F and D items, and facility deficiency citations) correlated significantly but poorly with QoL (coefficients ranging from 0.003 to 0.3, P < .001). In the fully adjusted mixed effects model, all predictor variables, demographics, and functional status explained <21% of the total variance in QoL among residents. These findings were consistent in sensitivity analyses stratified by 1-year length of stay and by diagnosis of dementia. CONCLUSIONS AND IMPLICATIONS: MDS items and facility deficiency citations encapsulate a significant but very small proportion of variance in residents' QoL. This indicates the need to measure QoL directly among residents, to plan person-centered care, and to evaluate its performance in nursing home facilities.

Comparing Dementia Classification by Self-Report and Administrative Records in the National Core Indicators-Aging and Disability Survey: A Predictive Modeling Approach.

Policymakers are interested in the long-term services and supports (LTSS) needs of people living with dementia. The National Core Indicators-Aging and Disability (NCI-AD) survey is conducted to evaluate LTSS care needs. However, dementia reporting in NCI-AD varies across states, and is either obtained from state administrative records or self-reported during the survey. We explored the implications of identifying dementia from administrative records versus self-report. We analyzed 24,569 NCI-AD respondents age 65+, of which 22.4% had dementia. To assess dementia accuracy by data source, we fit separate logistic regression models using the administrative and self-reported subsamples. We applied model coefficients to the population whose dementia status came from the opposite source. Using the administrative model to predict self-reported dementia resulted in higher sensitivity than using the self-report model to predict administrative dementia (43.8% vs. 37.9%). The self-report model's diminished sensitivity suggests administrative records may capture cases of dementia missed by self-report.

Spousal Cognitive Status and Risk for Declining Cognitive Function and Dementia: The Atherosclerosis Risk in Communities Study.

Objectives: We investigated the relationship between the cognitive status of participants' spouses and participants' own cognitive outcomes, controlling for mid-life factors. Methods: Participants (n = 1845; baseline age 66-90 years) from the prospective Atherosclerosis Risk in Communities Study were followed from 2011 to 2019. We used linear regression and Cox proportional hazard models to estimate whether spouses of people with MCI/dementia had lower cognitive functioning and elevated risk of incident dementia. Results: Having a spouse with MCI/dementia was associated with a deficit in cognitive function (b = -0.09 standard deviations; 95% CI = -0.18, 0.00). Adjustment for mid-life risk factors attenuated this association (b = -0.02 standard deviations; 95% CI = -0.10, 0.06). We observed no significant relationship between spousal MCI/dementia status and incident dementia (hazard ratio = 0.97; 95% CI = 0.69, 1.38). Discussion: Spousal cognitive status is not associated with poor cognitive outcomes independent of mid-life factors.

Examining Satisfaction and Quality in Home- and Community-Based Service Programs in the United States: A Scoping Review.

BACKGROUND AND OBJECTIVES: Long-term services and supports in the United States are increasingly reliant on home- and community-based services (HCBS). Yet, little is known about the quality of HCBS. We conducted a scoping review of the peer-reviewed literature to summarize HCBS consumer, provider, and stakeholder satisfaction with services as a means of assessing quality. RESEARCH DESIGN AND METHODS: We searched PubMed, OVID-MEDLINE, and SCOPUS to identify articles published from 2000 to 2021 that reported on studies describing a U.S.-based study population. Articles were grouped into 3 categories: drivers of positive consumer satisfaction, drivers of negative consumer satisfaction, and provider and stakeholder perspectives on satisfaction. RESULTS: Our final sample included 27 articles. Positive perceptions of quality and reported satisfaction with services were driven by consistent, reliable, and respectful care providers, and adoption of person-centered models of service delivery. Mistreatment of consumers, staff turnover, training, service interruptions, and unmet functional needs were drivers of negative consumer perceptions of quality. Support for caregivers and emphasis on training were identified by providers and stakeholders as important for providing satisfactory services. DISCUSSION AND IMPLICATIONS: Multiple data challenges limit the ability to systematically evaluate HCBS program quality; however, studies examining single programs found that HCBS consumers are more satisfied and associate higher quality with easy-to-navigate programs and professional staff. Efforts to expand HCBS should also include requirements to systematically evaluate quality outcomes.

Age Differences in Determinants of Self-Rated Health among Recipients of Publicly Funded Home-and-Community-Based Services.

This research examined determinants of self-rated health (SRH) of publicly funded home-and-community-based services (HCBS) recipients and tested if the effects of determinants differ between older recipients and younger recipients with disabilities. Using Minnesota's data of 2015-2016 National Core Indicators - Aging and Disabilities survey (n = 3,426), this study revealed that functional status and community inclusion had both direct and indirect effects on SRH, with negative mood as a mediator. Community inclusion had a more pronounced effect on SRH in younger recipients than in older recipients. HCBS should address psychosocial needs and be tailored for recipients of different age groups.

Depressive Symptoms in Older African Immigrants with Mobility Limitations: A Descriptive Study.

OBJECTIVES: Before, during, and after their immigration to the United States, immigrants face stressful life circumstances that may render them at risk for depressive symptoms. However, there is a dearth of research on the mental health of African immigrants. We performed secondary data analyses of two studies in the Baltimore-Washington area to describe and identify correlates of depressive symptoms in older African immigrants. METHODS: Chi square tests, one-way ANOVAs, and linear regressions were used to describe and examine associations between depressive symptoms and immigrant-related risk factors. RESULTS: This sample included 148 participants who had a mean age of 62 (SD ± 8.2). Clinical depressive symptoms were present in 8.1% of participants, and trouble falling asleep for more than half of the days was the most prevalent symptom (20%). Levels of education, income, and migration reasons differed significantly from clinical depressive symptoms, but these were not significantly associated with more depressive symptoms after controlling for covariates. CONCLUSIONS: Longitudinal designs may further elucidate incidence, correlates, and long-term effects of depressive symptoms within this population. CLINICAL IMPLICATIONS: Knowledge of depressive symptom burden and risk factors can inform timely assessment, referral, and treatment of depressive symptoms and other mental health outcomes in older African immigrants.

Simultaneously Developing Interventions for Low-/Middle-Income and High-Income Settings: Considerations and Opportunities.

Most older adults reside in low- and middle-income countries (LMICs) but most research dollars spent on interventions to improve the lives of older adults are awarded to researchers in high-income countries (HICs). One approach to improve the implementation of evidence-based innovations for older adults in LMICs is designing interventions that are relevant to LMICs and HICs simultaneously. We propose that researchers in HICs could partner with stakeholders in an LMIC throughout the intervention design process to better position their intervention for the implementation in that LMIC. We provide an example study from an adaptation of the Resources for Enhancing Caregiver Health II in Vietnam, which did not use this strategy but may have benefited from this strategy. We then turn to several considerations that are important for researchers to contemplate when incorporating this strategy. Finally, we explore incentives for creating interventions that are relevant to both HICs and LMICs for funders, intervention designers, and intervention receivers. Although this is not the only strategy to bring interventions to LMICs, it may represent another tool in researchers' toolboxes to help expedite the implementation of efficacious interventions in LMICs.

Effects of Nurse Staffing on Resident Outcomes in Nursing Homes: A Systematic Review.

OBJECTIVES: To evaluate the evidence on effects of nurse staffing in nursing homes on resident outcomes. DESIGN: Systematic review. SETTING AND PARTICIPANTS: Studies evaluating the effects of nurse staffing levels, total staffing, or skill mix on pressure ulcers, nursing home associated infections, and pain outcomes for adult residents in US nursing homes. METHODS: We searched MEDLINE, Embase, CINAHL, and the Cochrane Database for English-language articles published between January 2000 and May 2021. We also searched for gray literature and sought expert referrals. Two reviewers participated in determination of eligibility, assessment of methodological quality, and abstraction of data. Abstracted data included study design; setting and population characteristics; and resident outcomes. We rated overall certainty of evidence (very low, low, moderate, and high) for each outcome using GRADE. RESULTS: Of 9152 unique citations, 378 articles underwent full-text review. We identified 22 eligible studies that addressed pressure ulcers (k = 15), COVID-19 cases and/or mortality (k = 4), other infections (k = 8), and moderate-severe pain among residents (k = 7); some examined multiple outcomes. Most studies (k = 17) were rated moderate or high quality. All studies were observational. Overall, registered nurse (RN) staffing was probably associated with fewer pressure ulcers (moderate certainty) and possibly fewer COVID-19 infections/mortality (low certainty), other infections (low certainty) and lower rates of moderate-severe pain (low certainty). Higher skill mix was probably associated with fewer pressure ulcers, higher resident COVID-19 infections, fewer other infections, and lower rates of moderate-severe pain (low certainty for all outcomes). CONCLUSIONS AND IMPLICATIONS: Higher RN staffing and skill mix may be associated with better nursing home resident outcomes, while results were mixed for total staffing. Increasing RN staffing levels and skill mix are one of a variety of approaches to improve nursing home care.

Identifying Nursing Homes With Diverse Racial and Ethnic Resident Compositions: The Importance of Group Heterogeneity and Geographic Context.

Racial/ethnic composition of nursing home (NH) plays a particularly important role in NH quality. A key methodological issue is defining when an NH serves a low versus high proportion of racially/ethnically diverse residents. Using the Minimum Data Set from 2015 merged with Certification and Survey Provider Enhanced Reports, we calculated the racial/ethnic composition of U.S.-based NHs for Black or Hispanic residents specifically, and a general Black, Indigenous, and People of Color (BIPOC) grouping for long-stay residents. We examined different definitions of having a high racial/ethnic composition by varying percentile thresholds of composition, state-specific and national thresholds, and restricting composition to BIPOC residents as well as only Black and Hispanic residents. NHs with a high racial/ethnic composition have different facility characteristics than the average NH. Based on this, we make suggestions for how to identify NHs with diverse racial/ethnic resident compositions.

Serious Mental Illness in Nursing Homes: Stakeholder Perspectives on the Federal Preadmission Screening Program.

The federal Preadmission Screening and Resident Review (PASRR) program was enacted in the 1980s amid concerns surrounding the quality of nursing home (NH) care. This program is meant to serve as a tool to assist with level of care determinations for NH applicants with serious mental illness (SMI) and was intended to limit the growth in the number of NH residents with SMI. Despite this policy effort, the prevalence of SMI in NHs has continued to increase, and little is known about the mechanisms driving the heterogeneous and suboptimal administration of the PASRR program, absent routine evaluative efforts. We conducted 20 semi-structured interviews with state and national stakeholders to identify factors affecting PASRR program administration and NH care for residents with SMI. Stakeholders expressed concern regarding fragmentation, specifically lack of clarity in the value of assessments beyond a regulatory requirement. Additionally, they cited variable program administration as contributing to fragmented communication patterns and inconsistent training across jurisdictions. Given the number of people with SMI currently residing in NHs, policy and practice should take a person-centered approach to assess how PASRR can be better used to support resident needs.

Evidence to Inform Policy and Practice: Mechanisms to Address Racial/Ethnic Disparities in Nursing Home Quality of Life.

Background and Objectives: Abundant evidence documents racial/ethnic disparities in access, quality of care, and quality of life (QoL) among nursing home (NH) residents who are Black, Indigenous, and people of color (BIPOC) compared with White residents. BIPOC residents are more likely to be admitted to lower quality NHs and to experience worse outcomes. Yet, little is known about processes for differences in QoL among residents receiving care in high-proportion BIPOC NHs. This study presents an examination of the processes for racial/ethnic disparities in QoL in high-proportion BIPOC facilities while highlighting variability in QoL between these facilities. Research Design and Methods: Guided by the Minority Health and Health Disparities Research Framework and the Zubritsky framework for QoL in NHs, we employ a concurrent mixed-methods approach involving in-depth case studies of 6 high-proportion BIPOC NHs in Minnesota (96 resident interviews; 61 staff interviews; 614 hours of observation), coupled with statewide survey data on residents' QoL linked to resident clinical Minimum Data Set assessments. Results: Quantitative findings show that BIPOC residents experience lower QoL than White residents across various domains. Qualitative findings reveal variability in BIPOC residents' QoL between high-proportion BIPOC facilities. In some facilities, BIPOC residents experienced worse QoL based on their race/ethnicity, whereas in others BIPOC residents QoL was not directly affected by their race/ethnicity or they had mixed experiences. Discussion and Implications: The findings highlight variability in racial/ethnic disparities in QoL across NHs with a high proportion of BIPOC residents. We identify health equity initiatives, including engaging with community BIPOC organizations and volunteers, and providing more resources to high-proportion BIPOC facilities to support staff training, additional staffing, and culturally specific programming. Given the increasing racial/ethnic diversity of NHs, ensuring equity in QoL for BIPOC residents is an urgent priority for NHs to remain relevant in the future.

Functional Limitations and Access to Long-Term Services and Supports Among Sexual Minority Older Adults.

Objective: Little is known about sexual minority (SM) older adults' activities of daily living (ADL) and instrumental activities of daily living (IADL) limitations and their subsequent access to long-term services and supports (LTSS). Methods: We analyzed cross-sectional data from the 2016 Health and Retirement Study limited to individuals ≥50 years old. Bivariate analyses were performed to examine 1) sexual identity differences in the prevalence of ADL/IADL limitations and 2) associations of sexual identity with having ADL/IADL limitations and having access to help with ADL/IADL limitations. Results: Our sample consisted of 3833 older adults, 6% (n = 213) were SM. Compared to heterosexual participants, bisexual older adults had greater reports of ADL/IADL limitations (20.9% vs. 35.9%, p = 0.013). Among those who reported having ADL/IADL limitations (n = 803), there were no sexual identity differences in accessing help for ADL/IADL limitations (p = .901). Discussion: Our findings contribute to the limited research on LTSS access among SM older adults.