Does Assisted Living Provide Assistance And Promote Living?

Assisted living has promised assistance and quality of living to older adults for more than eighty years. It is the largest residential provider of long-term care in the United States, serving more than 918,000 older adults as of 2018. As assisted living has evolved, the needs of residents have become more challenging; staffing shortages have worsened; regulations have become complex; the need for consumer support, education, and advocacy has grown; and financing and accessibility have become insufficient. Together, these factors have limited the extent to which today's assisted living adequately provides assistance and promotes living, with negative consequences for aging in place and well-being. This Commentary provides recommendations in four areas to help assisted living meet its promise: workforce; regulations and government; consumer needs and roles; and financing and accessibility. Policies that may be helpful include those that would increase staffing and boost wages and training; establish staffing standards with appropriate skill mix; promulgate state regulations that enable greater use of third-party services; encourage uniform data reporting; provide funds supporting family involvement; make community disclosure statements more accessible; and offer owners and operators incentives to facilitate access for consumers with fewer resources. Attention to these and other recommendations may help assisted living live up to its name.

Substance use problems and disorders among adults 50 years and older receiving mental health treatment for a primary neurocognitive disorder.

OBJECTIVES: This study sought to (1) identify the percentage of high-risk substance use or substance use disorder (SUD) and (2) examine the factors associated with high-risk substance use or SUD in adults aged 50 years and older receiving mental health treatment with a primary delirium or dementia diagnosis. METHOD: This study used 7 years (2013-2019) of national administrative data on community mental health center patients aged 50 years and older with a primary delirium or dementia diagnosis receiving treatment in the United States (U.S.). To examine factors associated with the dependent variable (high-risk substance use or SUD), a multivariable binary logistic regression model was utilized. RESULTS: The sample included 77,509 individuals who were mostly aged 65 years and older (69.7%), and did not have co-occurring high-risk substance use or SUD (90.1%). Receiving treatment in a U.S. region other than the Northeast, being younger, male, not non-Hispanic White, and having multiple mental health diagnoses had greater odds of co-occurring high-risk substance use or SUD. CONCLUSION: One in ten persons in this sample having high-risk substance use or SUD highlights the clinical necessity for screening and subsequent treatment for co-occurring high-risk substance use among persons receiving treatment for a neurocognitive disorder.

Development of a Lived Experience Panel to inform the design of embedded pragmatic trials of dementia care interventions.

BACKGROUND: The National Institute on Aging (NIA) Imbedded Pragmatic Alzheimer's Disease and Alzheimer's Related Dementia Clinical Trials (IMPACT) Collaboratory convened a Lived Experience Panel (LEP) to inform the development of research priorities and provide input on conducting embedded pragmatic clinical trials (ePCTs) of dementia care interventions. Given the importance of people with lived experience to dementia research, and the unique considerations of engaging people with dementia, we report on our process for the recruitment, selection, and initial convening of the IMPACT LEP. METHODS: The IMPACT Engaging Partners Team, in partnership with the Alzheimer's Association, sought nominations of individuals with mild cognitive impairment or early-stage dementia, care partners of other people living with dementia (PLWD), and proxy representatives for individuals with mid-to-late stage dementia. The 11-member LEP was composed of individuals with diverse personal experiences in part due to their age, race, ethnicity, gender, sexual orientation, geography, disability, or type of dementia. In its first year, the LEP met with IMPACT's Patient and Caregiver Relevant Outcomes Core and Ethics and Regulation Core. RESULTS: LEP members provided valuable insights and nuanced discussion of issues relevant to ePCTs in dementia care from a broad range of personal experience. Panelists identified key research priorities and provided insight on outcomes often studied by researchers. The LEP also informed investigators' approaches to waivers and modifications of written informed consent and evaluation of minimal risk. Summary reports of the LEP meetings with each Core are available on the IMPACT website. At the end of the first year, changes were made to the composition of the LEP, and opportunities were identified for expanding panelist engagement with IMPACT investigators, as were priorities and scope for future input. CONCLUSIONS: The IMPACT LEP provides a model for engaging PLWD and care partners in the research process as collaborators.

A National Typology of Health Service Regulation in Assisted Living.

BACKGROUND AND OBJECTIVES: State-regulating agencies use 350 different licenses and certifications to govern assisted living (AL), resulting in significant variation in regulations governing health services, the scope of practice, and capacity. This lack of standardization makes it difficult to compare and contrast AL operations and residents' outcomes across similarly regulated communities. RESEARCH DESIGN AND METHODS: We used qualitative and quantitative methods to empirically develop and describe a typology of state AL regulations that captures inter- and intrastate variation. Based on the rules governing health services, we created regulatory specificity scores for 5 thematic dimensions: medication administration, third-party care, skilled nursing, medication review, and licensed nurse staffing. With these scores, we conducted a K-means cluster analysis to identify groups of AL license types. To differentiate the regulatory types, we calculated standardized mean differences across structure, process, outcome, and resident characteristics of the AL communities licensed under each type. RESULTS: We identified 6 types of AL differentiated by the regulatory provisions governing health services: Housing, Holistic, Hybrid, Hospitality, Healthcare, and Health Support. The types align with previous work and reflect tangible differences in resident characteristics, health service structures, processes, and outcomes. DISCUSSION AND IMPLICATIONS: This typology effectively captures differences across regulated dimensions and can inform and support quality of care. Researchers, policy-makers, and consumers may benefit from using this typology and acknowledging these differences in AL licensure when designing research studies, developing policies, and selecting an AL community.

Selecting outcomes for pragmatic clinical trials in dementia care: The IMPACT Collaboratory iLibrary.

BACKGROUND: Many interventions improve care and outcomes for people with Alzheimer's Disease and related dementias (ADRD), yet are never disseminated. Pragmatic trials facilitate the adoption and dissemination of best practices, but gaps in pragmatic outcome measurement are a critical obstacle. Our objectives are (1) to describe the development and structure of the IMbedded Pragmatic ADRD Clinical Trials Collaboratory (IMPACT) iLibrary of potential outcome measures for ADRD pragmatic trials, and (2) to assess their pragmatic characteristics. METHODS: We identified potential outcome measures from several sources: a database of administrative and clinical outcome measures from ADRD clinical trials registered in ClinicalTrials.gov, published reviews, and IMPACT pilot pragmatic trial outcome measures. The iLibrary reports (a) number of items, (b) completion time, (c) readability for diverse populations, (d) cost or copyright barriers to use, (e) method of administration, (f) assessor training burden, and (g) feasibility of data capture and interpretation in routine care; a summary of pragmatic characteristics of each outcome measure (high, moderate, low); items or descriptions of items; and links to primary citations regarding development or psychometric properties. RESULTS: We included 140 outcome measures in the iLibrary: 66 administrative (100% were pragmatic) and 74 clinical (52% were pragmatic). The most commonly addressed outcome domains from administrative assessments included physical function, quality of care or communication concerns, and psychological symptoms or distress behaviors. The most commonly addressed outcome domains from clinical assessments were psychological symptoms or distress behaviors, physical function, cognitive function, and health-related quality of life. CONCLUSIONS: Pragmatic outcome measures are brief, meaningful to diverse populations, easily scored and interpreted by clinicians, and available in electronic format for analysis. The iLibrary can facilitate the selection of measures for a wide range of outcomes relevant to people with ADRD and their care partners.

Applying person-centered research ethics in the design of dementia-specific measures.

There is an emerging call for new strengths-based measures to guide research, care, and support for persons living with Alzheimer's disease and related dementias. Person-centered interventions have demonstrated a positive impact in global quality of life, but many promising approaches lack strengths-based measures with sufficient sensitivity to document relevant outcomes. Human centered design is an innovative method for person-centered instrument development. This paper describes a research process using Human Centered Design and highlights ethical principles considered during the translation of the design process to experiential world of Alzheimer's disease and related dementia. Including persons living with dementia and care partners as members of the design team offers new insights, while requiring focused attention on inclusivity, transparency, and person-centered ethics.

The relationship between person-centered care in nursing homes and COVID-19 infection, hospitalization, and mortality rates.

OBJECTIVES: This cohort study compared rates of COVID-19 infections, admissions/readmissions, and mortality among a statewide person-centered model known as PEAK and non-PEAK NHs. METHODS: Rates per 1000 resident days were derived for COVID-19 cases and admissions/readmissions, and per 100 positive cases for mortality. A log-rank test compared rates between PEAK (n = 109) and non-PEAK NHs (n = 112). RESULTS: Rates of COVID-19 cases, admission, and mortality were higher in non-PEAK compared to PEAK NHs. The median rates for all indicators had a zero value for all NHs, but in NHs above 90th percentiles, the non-PEAK case rate was 3.9 times more and the admission/readmission rate was 2.5 times more. CONCLUSIONS AND IMPLICATIONS: COVID-19 case, and mortality rates were lower in PEAK than non-PEAK NHs. Although PEAK and non-PEAK NHs may differ in other ways as well, person-centered care may be advantageous to promote infection control and improve outcomes.

Comfort First: Development and pilot testing of a web-based video training to disseminate Comfort Matters dementia care.

BACKGROUND: Alzheimer's disease-related dementias (ADRD) are a leading cause of disability and death. In late-stage ADRD most people prioritize comfort, but care to achieve comfort is rare. Comfort Matters combines palliative and geriatric care practices for nursing home dementia care, but in-person training reaches few sites. To facilitate dissemination, we developed Comfort First, a web-based training toolkit with video demonstration of Comfort Matters practices. METHODS: We developed and pilot-tested Comfort First (NIA Intervention Stage 1). Stakeholder advisors representing nursing home residents, caregiver, and clinical perspectives guided development. Professional videographers filmed Comfort Matters staff to illustrate comfort-focused dementia care skills. Video training modules, supported by an implementation manual, address Understanding the Person with Dementia, Promoting Quality of Life and Comfort, Working as a Team, Responding When People with Dementia are Distressed, Addressing Pain, and Making Comfort First a Reality. We then delivered Comfort First to 3 nursing homes. Implementation and outcome evaluation assessed the number and clinically diverse roles of trained staff and post-test knowledge. RESULTS: Nursing home staff roles (n = 146) were diverse: certified nursing assistants (40%), nurses (19%), administrators (11%), activities staff (6%), therapy staff (5%) and other roles. Individual participants' knowledge scores ranged from 50-100%; however average post-test knowledge scores were high, ranging from 90% (Addressing Pain) to 99% (Promoting Quality of Life and Comfort, Making Comfort First a Reality). CONCLUSIONS: The Comfort First web-based training toolkit combines best practices in palliative care and geriatric care for ADRD, using video demonstrations to support broader dissemination of these skills. Initial evaluation demonstrates acceptability and knowledge uptake for staff in diverse clinical roles; future research should include evaluation of practice change. Consistent with the intent of its public funding, Comfort First will be widely disseminated at a minimal cost.

Exploring the relationship between social support and mental health status among lymphoma survivors: Does patient-centered communication really matter? A brief report.

The purpose of this study was to explore whether patient-centered communication (PCC) would partially mediate the relationship between social support and mental health status among adult survivors of non-Hodgkin's lymphoma (NHL). Methods: Secondary analysis of self-administered questionnaires mailed to 682 adults with NHL who were assumed living and had completed the baseline 2005 study (83% response rate). Adult NHL survivors (n = 566) and data were analyzed using descriptive statistics and the Sobel test. Results: PCC partially mediated the relationship between social support and three measures of mental health outcomes (SF-36 Mental Component Summary [SF36-MCS], Post-Traumatic Stress Disorder Checklist-Civilian Version [PCL-C], Impact of Cancer - Negative Impact Summary [IOCv2 NIS]). Results of the conservative Sobel test were significant (p < .01) in three mediation models. Conclusions: Future research should focus on testing interventions that target PCC and identifying additional mediators and moderators between social support and mental health outcomes among cancer survivors.

Social Workers Critical to Honoring Commitments to Residents and Families in Long-Term Care.

Social workers have been at the forefront of research and advocacy to improve nursing home care for several decades. However, United States (U.S.) regulations have not kept pace with professional standards, as nursing home social services workers are still not required to have a degree in social work and many are assigned caseloads that are untenable for providing quality psychosocial and behavioral health care. The National Academies of Sciences, Engineering, and Medicine (NASEM)'s recently published interdisciplinary consensus report, The National Imperative to Improve Nursing Home Quality: Honoring our Commitment to Residents, Families, and Staff (NASEM, 2022) makes recommendations for changing these regulations, reflecting years of social work scholarship and policy advocacy. In this commentary, we highlight the NASEM report recommendations for social work and chart a course for continuing scholarship and policy advocacy to improve resident outcomes.

Patient-level information underlying overdiagnosis of urinary tract infections in nursing homes: A discrete choice experiment.

The overdiagnosis of urinary tract infections (UTIs) in nursing home residents is a significant public health threat. Using a discrete choice experiment and a diagnostic guideline, we examined which patient-level information was associated with the overdiagnosis of UTIs and found that urinalysis results and lower urinary tract status were most associated.

Patient Safety Culture in Assisted Living: Staff Perceptions and Association with State Regulations.

OBJECTIVES: To examine perceptions of patient safety culture (PSC) among assisted living (AL) administrators and direct care workers (DCWs), and their associations with state regulations. DESIGN: We conducted a survey using the PSC instrument developed by the Agency for Healthcare Research & Quality. Secondary data on ALs and residents were derived from the Medicare Master Beneficiary Summary Files. Other data sources were the Area Health Resource Files, a previously compiled national AL directory, and the US census. Data on state AL regulations were available from a prior study. SETTING AND PARTICIPANTS: Participants included administrators and DCWs working in assisted living communities serving Medicare beneficiary residents. METHODS: We employed exploratory factor analysis, examined Pearson correlations, and obtained standardized Cronbach alphas to test the PSC instrument. We estimated linear regression models with the dependent variable being the proportion of positive PSC assessments, for each PSC domain, with SEs clustered at the AL level. RESULTS: Surveys were completed by 714 administrators and DCWs in 257 ALs. The PSC instrument tested reliable and valid for AL communities. Administrators' and DCWs' perceptions of PSC differed significantly across almost all domains. A 1-unit increase in state regulatory specificity for DCW staffing was associated with a 4.13-percentage point (P < .05) increase in the PSC staffing domain. Associations with regulatory specificity in staff training were also found for other PSC domains. CONCLUSIONS AND IMPLICATIONS: PSC is an important metric for assessing organizational performance. DCWs have significantly worse perceptions of PSC than do administrators, suggesting it is crucial to understand the source of these differing perceptions. Because state regulations relate to PSC, achieving a comprehensive focus on patient safety in AL may require regulatory action, particularly increasing specificity with regard to staffing and training.

Excess Mortality Among Assisted Living Residents With Dementia During the COVID-19 Pandemic.

OBJECTIVE: To evaluate whether assisted living (AL) residents with Alzheimer's disease and related dementias (ADRD) experienced a greater rate of excess all-cause mortality during the first several months of the COVID-19 pandemic compared to residents without ADRD, and to compare excess all-cause mortality rates in memory care vs general AL among residents with ADRD. DESIGN: Retrospective cohort study. SETTING AND PARTICIPANTS: Two cohorts of AL residents enrolled in Medicare Fee-For-Service who resided in 9-digit ZIP codes corresponding to US AL communities of ≥25 beds during calendar year 2019 or 2020. METHOD: By linking Medicare claims and Vital Statistics data, we examined the weekly excess all-cause mortality rate, comparing the rate from March 12, 2020, to December 31, 2020, to the rate from January 1, 2019, to March 11, 2020. We adjusted for demographics, chronic conditions, AL community size, and county fixed effects. RESULTS: Of the 286,350 residents in 2019 and the 273,601 in 2020 identified in these cohorts, approximately 31% had a diagnosis of ADRD. Among all AL residents, the excess weekly mortality rate in 2020 was 49.1 per 100,000 overall during the pandemic. Compared to residents without ADRD, residents with ADRD experienced 33.4 more excess deaths per 100,000 during the pandemic. Among residents with ADRD, those who resided in memory care communities did not experience a statistically significant different mortality rate than residents who lived in general AL. CONCLUSIONS AND IMPLICATIONS: AL residents with ADRD were more vulnerable to mortality during COVID-19 than residents without ADRD, a finding similar to those reported in other settings such as nursing homes. Additionally, the study provides important new information that residents with ADRD in memory care communities may not have been at differential risk of COVID-19 mortality when compared to residents with ADRD in general AL, despite prior research suggesting they have more advanced dementia.

Recommendations for Medical and Mental Health Care in Assisted Living Based on an Expert Delphi Consensus Panel: A Consensus Statement.

Importance: Assisted living (AL) is the largest provider of residential long-term care in the US, and the morbidity of AL residents has been rising. However, AL is not a health care setting, and concern has been growing about residents' medical and mental health needs. No guidance exists to inform this care. Objective: To identify consensus recommendations for medical and mental health care in AL and determine whether they are pragmatic. Evidence Review: A Delphi consensus statement study was conducted in 2021; as a separate effort, the extent to which the recommendations are reflected in practice was examined in data obtained from 2016 to 2021 (prepandemic). In the separate effort, data were from a 7-state study (Arkansas, Louisiana, New Jersey, New York, Oklahoma, Pennsylvania, Texas). The 19 Delphi panelists constituted nationally recognized experts in medical, nursing, and mental health needs of and care for older adults; dementia care; and AL and long-term care management, advocacy, regulation, and education. One invitee was unavailable and nominated an alternate. The primary outcome was identification of recommended practices based on consensus ratings of importance. Panelists rated 183 items regarding importance to care quality and feasibility. Findings: Consensus identified 43 recommendations in the areas of staff and staff training, nursing and related services, resident assessment and care planning, policies and practices, and medical and mental health clinicians and care. To determine the pragmatism of the recommendations, their prevalence was examined in the 7-state study and found that most were in practice. The items reflected the tenets of AL, the role of AL in providing dementia care, the need for pragmatism due to the diversity of AL, and workforce needs. Conclusions and Relevance: In this consensus statement, 43 recommendations important to medical and mental health care in AL were delineated that are highly pragmatic as a guide for practice and policy.