OBJECTIVES:The objective of this study was to examine the long-term perceptions of the value of receiving an amyloid PET scan, a test used to diagnose Alzheimer's disease, among Medicare beneficiaries with cognitive impairment and their care partners. METHODS:An exploratory qualitative research design was used. A total of 100 in-depth semi-structured interviews were conducted with a purposeful sample of CARE-IDEAS participants two to three years post-scan. A team of coders applied qualitative content analysis to identify content about the value of the scan, which was then analyzed using thematic analysis, and stratified by diagnostic category (mild cognitive impairment vs. dementia) and scan results (elevated amyloid vs. not elevated). RESULTS:A majority of amyloid PET scan recipients and their care partners emphasized major benefits of receiving the scan including increased certainty about diagnosis, the ability to prepare for the future, potentially accessing treatment or trials, the ability to contribute to research, and limited procedural risks. Some participants also reported concerns about the cost of the scan, the lack of effective treatment options and clear prognostic information, the limited impact on their lives or treatment plans, and the emotional toll of living with the results. Their views and endorsements of the scan were shaped by their health and personal circumstances (e.g., seen as less relevant among those with rapidly declining health), and by their preference for more information and involvement in decision-making. CONCLUSION:The perspectives of persons living with cognitive impairment and their care partners about the value of amyloid PET scans differed across disease trajectories and personal circumstances. These experiences should be taken into consideration when advising symptomatic patients on the benefits and drawbacks of biomarkers for Alzheimer's disease.

BACKGROUND AND OBJECTIVES:Survey research is important in tackling the complexity of the increasing numbers and types of assisted living and residential care communities (ALCs) and the services provided, as well as the staffing challenges affecting long-term care settings. We describe the methodological experience of conducting a nationally representative survey of administrators. RESEARCH DESIGN AND METHODS:The sampling frame was drawn a directory of ALCs that were licensed, certified, or otherwise regulated by states in 2019. From October 2021 to October 2023, the administrator from each randomly selected ALC was mailed a questionnaire about end-of-life care and cover letter with a username and password for web-response if preferred. Tailored follow-up was conducted with nonresponders. RESULTS:A total of 2084 ALCs participated overall response rate = 43.4%. Research staff made a total of 36,258 contacts with administrators in all sampled ALCs for an average of 9 min per contact. The likelihood of obtaining a completed survey increased with additional contact attempts, with the most gains occurring within seven attempts. More contacts were required for large, urban ALCs as well as those with specialized memory care. Accounting for all direct costs, the average cost per survey completion was $195 exclusive of incentives. DISCUSSION AND IMPLICATIONS:To obtain representative, high-quality data about the characteristics of residents and the care provided within the large and growing sector of ALCs, sufficient resources must be available to continue to develop and refine cost-effective, novel survey methods for recruitment and data collection.

INTRODUCTION: Biomarkers for Alzheimer's disease (AD) are now available for clinical use; however, little is known about their use in primary care. METHODS: Cross-sectional analysis of 2024 data from the National Dementia Workforce Study, a nationally representative survey of primary care providers (PCPs) who treat Medicare beneficiaries with dementia. We used survey weights to generate nationally representative estimates of self-reported biomarker use. RESULTS: Among 2574 PCPs, computed tomography/magnetic resonance imaging (CT/MRI) (79%) and neuropsychological testing (71%) were most commonly used, followed by positron emission tomography (PET) (18%), plasma (16%), genetic (14%), and CSF testing (9%). PCPs confident in diagnosing dementia and from specialist settings were more likely to report ordering PET, plasma, genetic, and CSF testing. DISCUSSION :This study describes patterns in the adoption of AD biomarkers in the year after Medicare expanded coverage for some biomarkers, providing a baseline for measuring changes in biomarker use. Guidelines are needed to inform PCP decision-making for biomarkers.

Abstract Background To explore the relationship between receipt of amyloid-β PET scan results and subsequent experiences of economic strain and financial decision-making for persons with cognitive impairment and their care partners. Methods A parallel convergent mixed-methods design where quantitative and qualitative data were simultaneously collected and analyzed. Participants included a subset of community-residing Medicare beneficiaries with cognitive impairment who had an amyloid-β PET scan at a participating specialty center and their care partners, from the IDEAS study. Regression models tested associations between an elevated scan result and objective and subjective economic strain outcomes. Qualitative semi-structured interviews were conducted with patients and care partners ~24-36 months post-scan occurrence. Results Participants' mean age was 75, were majority White, non-Hispanic, highly educated, in good health, and well-resourced. Care partners were mainly spouses. Patients and care partners with elevated amyloid did not have higher economic strain at any post-disclosure time point compared to those with a negative scan. However, difficulty paying bills increased substantially for all participants over 18-24 months. Themes related to patient and care partner experiences of financial decision-making considering the scan were: 1) the need to make or update financial plans, 2) perceived care needs and financial resources for meeting care needs, and 3) involvement of family members in financial plans. Conclusions Despite engaging in financial decision-making post-scan, participants reported experiencing economic strain, as measured by difficulty paying bills. More research is needed across the wealth distribution to develop methods for identifying and addressing economic strain experiences following a diagnosis of dementia.

BackgroundThe goal of palliative care (PC) is to reduce suffering and improve quality of life for patients with life-limiting illnesses and their families. Prior studies consistently demonstrate high symptom burden among PC patients; however, most evidence comes from cancer populations outside the US, leaving a gap in large-scale US data across disease groups.MethodsWe conducted a retrospective cohort study using quality metrics from a large, nonprofit hospice agency in the US Northeast. The study included 5871 patients who received palliative care services and had at least one Edmonton Symptom Assessment Scale (ESAS) assessment between July 2022 and December 2023. Five symptoms are described by severity on a 0-10 scale in a sample with malignant and non-malignant diagnoses.ResultsWe observed high prevalence of pain (34.3%), anxiety (32.3%), and dyspnea (28.0%) at first consultation. Many patients also reported moderate (4-6) or severe (7-10) intensity for pain (17.6% and 16.7%, respectively). Symptom burden also varied across disease groups: patients with solid tumors (63.3%) and liver disease (57.5%) exhibited particularly high rates of pain, while heart (46.9%) and lung disease (66.8%) exhibited high dyspnea. Among the 2852 patients with repeated consultations, there was substantial symptom improvement for pain (33.1% of patients), anxiety (22.1%), and dyspnea (19.3%).ConclusionPalliative care patients experience high symptom burden, varying by diagnosis. Planning access to tailored PC services to meet varying physical and emotional needs at a population level remains critical.

Objectives In 2023, the Brief Interview for Mental Status (BIMS) was added to the Medicare-funded home health (HH) standard patient assessment (Outcomes and Assessment Information Set [OASIS]). This is the first validated cognitive screening tool in the OASIS, but no existing work reports on BIMS implementation in real-world HH clinical practice, overlap between BIMS and clinician-reported cognitive symptoms in the OASIS, or patient characteristics associated with lower BIMS scores. Design Cross-sectional study. Setting and Participants We examined 2023 to 2024 OASIS clinical assessments for 42,745 older (65+) patients at a large, urban HH agency. Methods BIMS scores range from 0 (severe impairment) to 15 (cognitively intact). We describe BIMS score distribution, report overlap between BIMS scores and other OASIS items describing patient cognition, and fit a multivariable model predicting a BIMS score indicating cognitive impairment (score <13). Results Based on the BIMS score, 78% of patients were cognitively intact, 15% moderately impaired, and 7% severely impaired. Over half (59%) received the maximum possible score of 15, indicating no impairment. Even among those with probable dementia, reported memory deficits, or reported impaired decision-making, one-quarter scored as cognitively intact (25%, 25%, and 22%, respectively). Patients were more likely to score as cognitively impaired if they primarily spoke Spanish (adjusted odds ratio [aOR], 1.58; 95% CI, 1.42-1.76) or another language (aOR, 1.54; 95% CI, 1.41-1.67) compared with English, were non-Hispanic Black (aOR, 1.44; 95% CI, 1.34-1.54), Hispanic (aOR, 1.38; 95% CI, 1.25-1.53), Asian (aOR, 1.34; 95% CI, 1.20-1.48), or other race/ethnicity (aOR, 1.51; 95% CI, 1.35-1.70) compared with non-Hispanic White, or paid for HH using Medicaid compared with traditional Medicare (aOR, 1.34; 1.24-1.44). Conclusions and Implications Findings suggest value in combining BIMS scores with other data elements to inform care planning and indicate a need for additional resources and training to ensure BIMS is implemented as intended across subgroups.

Using a national survey of assisted living administrators (n = 2,084) and interviews with residents' bereaved next of kin (n = 30), we describe policies administrators reported complying with at the worst of the COVID-19 pandemic and explore relationships between COVID-19-related policies and bereaved next-of-kin's perceptions of end-of-life care quality, integrating findings to develop a comprehensive examination of end-of-life care in assisted living. During the pandemic, most administrators reported allowing compassionate care visits and hospice services. Next of kin described limited visitation and external care services and declines in residents' physical, mental, and social well-being, emphasizing the difficulty of missing precious time together. This study examines next-of-kin experiences of residents who died during the COVID-19 pandemic, providing evidence to inform future infection control policies.

Context. Research shows hospice primary caregivers report better quality of care at Nonprofit (NP) than For-Profit (FP) hospices, but there is variation in quality across NP hospices. Objective. Examine bereaved caregiver reports of the quality as a factor of whether NP hospices are part of an integrated healthcare system that included an acute care hospital. Methods. Cross-sectional study of NP Hospices used star ratings and adjusted hospice composite quality scores May 2023 publicly data reported on the Care Compare website. Using organizational website information, we compared hospices part of an integrated healthcare system with at least one acute care hospital to hospices without that affiliation. Primary outcomes were overall hospice adjusted CAHPs score and star ratings. Results. Nearly one-half (44.5%) of 645 NP hospices were part of integrated healthcare systems. Overall hospice CAHPs scores did not differ by organizational affiliation, mean score 82 [95% CI 82.8-83.6] for hospice part of integrated system vs 83.3 [95% CI 82.9-83.7] those without that affiliation), nor did mean star ratings (3.7 [ 95% CI 3.6-3.8] vs. 3.8[ 95% CI 3.7 -3.8]) and CAHPs scores 3 points or more below the national average (29.5%[95% CI 24.3-35.1] vs 30.8%[ 95% CI 26.0 -35.9]). State fixed-effects models showed a trend towards lower quality among hospice in integrated systems but did not reach conventional statistical significance. Conclusion. CAHPs hospice scores did not differ if a hospice was part of integrated healthcare system or not. Further research is needed on variation in quality in NP hospices. J Pain Symptom Manage 2025;69:354-360. (c) 2025 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights are reserved, including those for text and data mining, AI training, and similar technologies.

There is limited evidence about the quality of end-of-life care provided in assisted living (AL), especially as related to various community-level care processes supporting dying in place. This study aimed to explore narratives of bereaved next-of-kin of deceased AL residents, focusing on end-of-life care quality and hospice utilization as a factor of AL retention policies for dying residents and staffing. We conducted 52 semi-structured telephone interviews with bereaved next-of-kin of persons who resided in AL during the last month of life across 38 states, purposefully oversampling racially and ethnically diverse ALs. We stratified qualitative data along care processes obtained through a nationally-representative survey of administrators at AL communities with 25 or more beds. Two coders applied exploratory thematic analysis to analyze narratives stratified by AL policy to retain residents in need of end-of-life care (vs. case-by-case vs. discharge) and any registered nurse (RN) on staff (yes/no). Next-of-kin cited the desire for more staff attention and avoiding late-life transitions as key motivating factors for enrollment in hospice. Even in AL communities with a policy to retain dying residents, participants reported receiving an ultimatum to either enroll their next-of-kin in hospice or move them to another setting like a nursing home. Regardless of RN availability, electing hospice enhanced staff access, particularly overnight presence and support for residents at risk of falling. Our study highlights the importance of hospice care in allowing dying residents to stay in place across AL communities with varying policies regarding end-of-life care and RN availability.

Home Health Focus is a new publicly available data set representing home health utilization by Medicare beneficiaries, aggregated annually at the home health agency, county, and state levels from 2016 to 2019. This data can be used by anyone interested in trends of Medicare home health users, both locally and nationally. We describe the creation of the cohorts of home health users, including over 6 million home health stays from 5 million Medicare beneficiaries. We also provide examples of potential research questions using these data sets.

High-intensity end-of-life (EoL) care for patients with cancer often includes multiple transitions to the hospital and intensive care unit (ICU) and is associated with adverse outcomes, such as declines in patient functional abilities [...].

Background: Place of death and its concordance with patient preference is a key indicator for end-of-life care, studied cross-nationally and flagged as a priority by the OECD. However, it is unclear if and how 'place' is considered in health policy in relation to end-of-life care. This study aims to examine if and how health policies in different nations consider places of end-of-life care and death. Methods: We conducted a comparative qualitative study across the US, the Netherlands, Portugal, and Uganda, of health policy documents following the READ (i.e., Ready materials, Extract data, Analyze data, Distill findings) systematic approach for document analysis in health policy research. Documents were analyzed using directed content analysis following Hsieh and Shannon (2005). Timelines for document publication were country-specific, based on local health policy developments relevant to end-of-life care in the last two decades. Backdates ranged from 2001 in Uganda to 2015 in the Netherlands; the most recent publication year was 2024 for all countries. Findings: We identified 89 policy documents relevant to end-of-life care mentioning preferred or actual places of end-of-life care or death. The first topic was 'Narratives around places', where home was prioritized while inpatient facilities were most problematized. A second topic 'Policy measures acting on places' included: i) Availability of services across places, where the rural-urban divide, workforce shortages, waitlists and financial considerations challenged availability of end-of-life care across places; and ii) Professional expertise vs. community empowerment, which highlighted a key tension in the extent to which countries invest in professional expertise versus community empowerment. Conclusions: While improving care at home is prioritized with evidence-based reasons to support it, our study shows that policymakers overlook the potential benefits of other care settings and flexible care solutions that promote continuity of care. This comparative analysis unveiled implications to improve end-of-life care across care settings.

Mild cognitive impairment (MCI) is a key risk factor for future dementia and represents an opportunity for early engagement in treatment and decision-making. Although MCI affects more people than dementia, little is known about MCI diagnosis rates. This study aimed to determine the proportion of people with MCI who received a formal diagnosis and identify patient characteristics associated with an MCI diagnosis in a nationally representative sample of Medicare beneficiaries in the United States. To achieve this aim, we used data from the National Health and Aging Trends Study (NHATS) linked with Medicare claims data. We included beneficiaries enrolled in the 2015 round of NHATS, who developed symptoms of cognitive impairment consistent with MCI according to a validated algorithm of NHATS measures of cognition, and were continuously enrolled in Medicare fee-for-service. Beneficiaries were followed up until 2022. Beneficiaries with diagnosed MCI were identified in Medicare claims data using ICD-9 and ICD-10 codes for MCI. Univariate and multivariate logistic regressions were used to identify patient characteristics associated with diagnosed MCI. Of 2.7 million continuously enrolled Medicare beneficiaries with symptoms of cognitive impairment consistent with MCI, only 10.6% had a diagnosis of MCI recorded in claims. Multivariate analyses found the odds of diagnosed MCI were higher among women, beneficiaries with a bachelor’s degree or higher, and lower among beneficiaries who attended doctor visits alone. The findings of this study suggest that MCI is significantly under-diagnosed. Future research and policy initiatives are needed to increase MCI diagnosis rates.

BACKGROUND:Mild cognitive impairment (MCI) is a key risk factor for future dementia. Although MCI affects more people than dementia, little is known about MCI diagnosis rates. The aim of this study was to determine the proportion of people with MCI who received a formal diagnosis and identify patient characteristics associated with an MCI diagnosis in a nationally representative sample of Medicare beneficiaries in the United States. METHOD:This study is a retrospective cohort study data from the National Health and Aging Trends Study (NHATS). NHATS is an annual nationally representative survey of Medicare beneficiaries and includes measures of cognition. We included beneficiaries enrolled in the 2015 round of NHATS, who developed symptoms of cognitive impairment consistent with MCI according to a validated algorithm of NHATS measures of cognition, and were continuously enrolled in Medicare fee-for-service. Beneficiaries were followed up until 2022. Beneficiaries with diagnosed MCI were identified in Medicare claims data using ICD-9 and ICD-10 codes for MCI. Univariate and multivariate logistic regressions were used to identify patient characteristics associated with diagnosed MCI. Characteristics of interest included age, gender, race and ethnicity, marital status, education, number of children, living alone, visiting the doctor alone, number of co-morbid conditions, depression, and anxiety. Sample weights were applied to all analyses to generate nationally representative estimates. RESULT:Of 2.7 million continuously enrolled Medicare beneficiaries with symptoms of cognitive impairment consistent with MCI, only 10.6% had a diagnosis of MCI recorded in claims. Univariate analyses found the odds of diagnosis were lower among younger beneficiaries, higher among women, and lower among beneficiaries who attended doctor visits alone. Multivariate analyses did not find any characteristics significantly associated with diagnosed MCI however, statistical power may have been limited by the small number of beneficiaries with an MCI diagnosis. A sensitivity analysis limiting to significant predictors from the univariate analysis confirmed the association between attending doctor visits alone and undiagnosed MCI. CONCLUSION:The findings of this study suggest that MCI is significantly underdiagnosed, particularly among Medicare beneficiaries who attend doctor visits alone. Future research and policy initiatives are needed to increase MCI diagnosis rates.

Hospice is crucial in meeting the increasing care needs of dying residents in assisted living (AL) and supporting dying in place. We know little about how AL-hospice collaboration relates to staying in AL at the end of life. We conducted a national survey of AL administrators in 2021-2023 about end-of-life care processes in large ALs (25+ beds). The survey contained instruments adapted from other long-term care settings, including a Likert-scale with items about AL-hospice collaboration quality (e.g., AL staff know when to expect a hospice nurse visit for all/most/some/none of the time). The sample included 9,069 AL residents who died in 2021 or 2022 in 1,501 surveyed ALs. We operationalized “staying in place with support at the end of life” as the number of days with hospice in AL in the last 90 days of life, excluding days receiving hospice in other settings. Two-part models were used to estimate the relationship between reported AL-hospice collaboration quality and days receiving hospice in AL, accounting for individual-, AL-, and market-level characteristics. Decedents spent 2.6 more days on hospice in AL (95% CI: 1.1, 4.2) if administrators reported residents were always assessed within 24 hours of hospice referrals, compared to residents in ALs where this happened none/some/most of the time. This difference represents 11% more days in place for residents who lived in ALs where administrators reported that hospice providers always respond timely to hospice referrals. The collaboration between hospice and AL staff is a modifiable factor that can improve end-of-life care experiences.

BACKGROUND:Gabapentinoid-related peripheral edema may prompt loop diuretic prescribing. Nursing home (NH) residents may be especially prone to this prescribing cascade. We estimated the incidence and identified predictors of the gabapentinoid-loop diuretic prescribing cascade in NHs. METHODS:We conducted a retrospective cohort study using 2016-2022 Medicare claims linked with Minimum Data Set assessments. We identified residents aged ≥ 66 years who initiated gabapentinoids in NHs and who had no evidence of loop diuretic use, heart failure, or renal insufficiency during the prior 6 months. The outcome was loop diuretic initiation within 90 days of gabapentinoid initiation. Using multivariable Poisson regression models, we estimated adjusted risk ratios (aRR) with 95% robust confidence intervals to identify predictors. We used pooled logistic regression models to examine the relationship between time-varying gabapentinoid dose and loop diuretic initiation risk. RESULTS:Among 23,544 residents, 994 (4.2%) experienced a prescribing cascade at a median of 36 days (IQR 15-61) after gabapentinoid initiation. Risk was higher with age 86-90 years (aRR = 1.60) or ≥ 91 years (aRR = 1.38); a diagnosis of chronic pain or fibromyalgia (aRR = 1.16), or diabetes (aRR = 1.23); and receipt of potassium-sparing diuretics (aRR = 1.53), thiazide diuretics (aRR = 1.27), or 15 or more unique medications (aRR = 1.18). Higher (versus lower) weekly gabapentin dose during follow-up was associated with a 1.45 times higher prescribing cascade risk over 13 weeks. Those with Alzheimer's Disease and Related Dementias (aRR = 0.79), or moderate (aRR = 0.72) to severe cognitive impairment (aRR = 0.59) had a lower risk versus those with intact cognition. CONCLUSIONS:Approximately 1 in 20 NH residents who initiate gabapentinoids receives a loop diuretic within 3 months. Potentially modifiable predictors included existing polypharmacy and titrating gabapentinoid doses. NH clinicians should monitor for edema soon after gabapentinoid initiation and consider dose reductions or discontinuation before adding a loop diuretic.

BACKGROUND:This study aimed to identify distinct patterns of beliefs regarding the importance of Alzheimer's disease (AD) risk factors and the effectiveness of prevention strategies among Americans aged 50+. This information could be used to develop public health interventions to increase engagement in dementia prevention strategies. METHOD:We analyzed data from 1,819 adults who participated in a single 2010 Health and Retirement Study experimental module on AD knowledge and beliefs. On a 3-point Likert scale, participants rated the importance of AD risk factors (stress and genetics) for causing AD (1 = not important; 3 = very important) and the effectiveness of prevention strategies (physical activity, mental activity, diet, vitamins) (1 = not effective; 3 = very effective). We performed an unweighted latent profile analysis to identify distinct profiles of beliefs about AD risk factors and prevention strategies and multinomial regression to identify demographic predictors of profile membership. RESULTS:We identified three distinct belief profiles. Profile 1 (63% of participants) were uncertain about the importance of risk factors and the effectiveness of prevention strategies; Profile 2 (15% of participants) strongly believed in the effectiveness of all prevention strategies, and Profile 3 (21% of participants) rated genetics as the most important risk factor but did not believe in the effectiveness of prevention strategies. Having a master's degree or above was associated with Profile 1 membership. Black participants were more likely than White participants to belong to Profiles 2 or 3 (RRR: 2.23 and 2.36, p <0.001). However, personal experience with AD was not associated with Profile membership. Compared with Profile 1, Profile 3 members had lower odds of wanting to learn their future AD risk (OR: 0.72, p = 0.029), and Profile 2 members had higher odds of believing they would develop AD in the future (OR: 1.26, p = 0.05). CONCLUSIONS:We found three distinct profiles of beliefs about AD risk factors and prevention strategies. Demographic characteristics, such as education and race, were associated with profile membership but not experience with AD. Public health messaging about AD prevention should be tailored to the beliefs of different demographic groups.

Mild cognitive impairment (MCI) is a key risk factor for future dementia. Although MCI affects more people than dementia, little is known about MCI diagnosis rates. The aim of this study was to determine the proportion of people with MCI who received a formal diagnosis and identify patient characteristics associated with an MCI diagnosis in a nationally representative sample of Medicare beneficiaries in the United States. This study is a retrospective cohort study data from the National Health and Aging Trends Study (NHATS). NHATS is an annual nationally representative survey of Medicare beneficiaries and includes measures of cognition. We included beneficiaries enrolled in the 2015 round of NHATS, who developed symptoms of cognitive impairment consistent with MCI according to a validated algorithm of NHATS measures of cognition, and were continuously enrolled in Medicare fee-for-service. Beneficiaries were followed up until 2022. Beneficiaries with diagnosed MCI were identified in Medicare claims data using ICD-9 and ICD-10 codes for MCI. Univariate and multivariate logistic regressions were used to identify patient characteristics associated with diagnosed MCI. Characteristics of interest included age, gender, race and ethnicity, marital status, education, number of children, living alone, visiting the doctor alone, number of co-morbid conditions, depression, and anxiety. Sample weights were applied to all analyses to generate nationally representative estimates. Of 2.7 million continuously enrolled Medicare beneficiaries with symptoms of cognitive impairment consistent with MCI, only 10.6% had a diagnosis of MCI recorded in claims. Univariate analyses found the odds of diagnosis were lower among younger beneficiaries, higher among women, and lower among beneficiaries who attended doctor visits alone. Multivariate analyses did not find any characteristics significantly associated with diagnosed MCI however, statistical power may have been limited by the small number of beneficiaries with an MCI diagnosis. A sensitivity analysis limiting to significant predictors from the univariate analysis confirmed the association between attending doctor visits alone and undiagnosed MCI. The findings of this study suggest that MCI is significantly underdiagnosed, particularly among Medicare beneficiaries who attend doctor visits alone. Future research and policy initiatives are needed to increase MCI diagnosis rates.