Lauren B. Gerlach

Background: Federal policies have successfully targeted the prevalence of antipsychotic (AP) exposure in NHs, but the duration of treatment among nursing home (NH) residents has not been reported. We evaluated AP duration and discontinuation within six months in residents with dementia. Methods: Retrospective cohort study of long-stay NH residents with dementia who newly initiated an AP medication. We evaluated changes in AP duration and discontinuation within six months relative to two federal initiatives: National Partnership to Improve Dementia Care (2012) and inclusion of AP use measures in the NH Star Ratings (2015). We accounted for resident and facility characteristics in a competing-risks analysis establishing the relationship between the two policy periods and AP outcomes. Results: There were 43 668 new episodes of AP initiation among 38 275 residents. The duration of treatment within six months declined from 125.9 days in the pre-Partnership period to 120.5 days and 120.6 days in the post-Partnership and post-Five Star periods, respectively. Those who initiated APs after the Partnership [adjusted hazard ratio (aHR) = 1.17; confidence interval, 1.10-1.24] and after the Five Star Rating change (aHR = 1.19; 95% CI, 1.07-1.32) policy periods were more likely to stop the medication within 6 months as compared to those who initiated during the prior period. Conclusions: Federal policies designed to reduce AP prescribing in NH residents with dementia had a nominal impact on treatment duration within the first six months, with more than half continuing treatment beyond 6 months.

Importance: Benzodiazepines and antipsychotics are frequently prescribed for symptom management in patients with Alzheimer disease and related dementias (ADRD) receiving hospice care, yet evidence guiding their safety and effectiveness is limited.Objective: To evaluate the association between incident benzodiazepine or antipsychotic use and 180-day mortality among nursing home residents with ADRD enrolled in hospice.Design, Setting, and Participants: This retrospective case-control study used national Medicare claims and Minimum Data Set assessments from July 1, 2014, to September 30, 2018, from US nursing homes providing long-term care. Residents with ADRD newly enrolled in hospice who had no benzodiazepine or antipsychotic use in the prior 6 months were included. Incident users were matched 1:1 to nonusers on enrollment timing, age, sex, comorbidity, cognitive function, and baseline central nervous system medication use. Follow-up was 180 days from hospice enrollment. Analyses were performed from March 2023 to December 2024.Exposures: Initiation of benzodiazepine or antipsychotic use during hospice, with no fills of the respective medication class in the prior 6 months.Main Outcomes and Measures: The primary outcome was all-cause mortality within 180 days of hospice enrollment. Hazard ratios (HRs) were estimated using Cox proportional hazards regression models adjusting for demographic, clinical, and hospice-level characteristics. Sensitivity analyses included propensity score–weighted models and models accounting for cumulative exposure.Results: Among 139 103 participants (105 372 [75.8%] female; mean [SD] age, 87.6 [7.7] years), 26 872 matched pairs were included in the benzodiazepine cohort and 10 240 in the antipsychotic cohort. For the 53 859 participants in matched cohorts, the mean (SD) age was 89.0 (6.4) years, and 45 116 (83.8%) were female. Initiation of benzodiazepine use was associated with higher 180-day mortality compared with nonuse (HR, 1.41; 95% CI, 1.38-1.44), as was initiation of antipsychotic use (HR, 1.16; 95% CI, 1.12-1.20). These findings were consistent across propensity score–weighted models and with greater cumulative exposure.Conclusions and Relevance: In this national case-control study of nursing home residents with ADRD receiving hospice care, initiation of benzodiazepine or antipsychotic use was associated with increased 180-day mortality. While these medications may provide symptom relief in appropriate clinical scenarios, their use is associated with substantial risks. These findings highlight the need for careful prescribing decisions and the development of dementia-specific hospice prescribing guidelines.

The growing aging population and rising prevalence of dementia are driving increased demand for long‐term care services and supports in the United States. People with dementia require substantial support and care, often from direct care workers in private homes, assisted living communities, and nursing homes. Despite their crucial role, these workers receive highly variable training, particularly in dementia care, and face significant work‐related challenges including stress, injury, and burnout. The National Dementia Workforce Study (NDWS), sponsored by the National Institute on Aging, was designed to include large‐scale, nationally representative annual surveys of staff and administrators providing care to individuals with dementia in home care, assisted living, and nursing homes, and of community clinicians practicing across settings. NDWS will capture workforce demographics, training adequacy, job satisfaction, and their impact on dementia care quality. This report describes NDWS's rigorous process for questionnaire design for the initial wave of home care, assisted living, and nursing home surveys. Our survey development methods integrated literature reviews, validated questionnaire items, expert consultations, and cognitive interviews to ensure instrument reliability and validity. Resulting survey data will be available to researchers seeking to examine workforce conditions, training, and worker knowledge, and their impact on care for people with dementia. NDWS infrastructure will also allow researchers to link survey responses with administrative and medical claims data to examine how workforce dynamics and organizational factors are associated with outcomes for people with dementia over time, enabling insights into policies to improve dementia care training, workforce retention, and care delivery.

People with dementia have complex medical, functional, and social needs and experience highly variable care quality and outcomes across the U.S. health care system. Community‐based physicians, nurse practitioners, and physician assistants serve critical roles in diagnosing and managing dementia, yet little is known about this workforce and factors contributing to variability in care. The National Dementia Workforce Study (NDWS), sponsored by the National Institute on Aging, is conducting large nationally representative surveys of health care workers who provide care to people with dementia in nursing homes, assisted living communities, home care, and community medical practices. In this report, we summarize the methods for one of those surveys, the NDWS Community Clinician Survey, which surveys community‐based physicians and advanced practice providers specializing in primary care, psychiatry, and neurology who provide clinical care to people with dementia. This survey captures comprehensive data on these clinicians, including demographics, training, and licensure; where and how they practice; their patient panels; processes of care for dementia diagnosis and management; and job factors influencing retention and turnover. These survey data can be linked with Medicare claims and other administrative data sources to allow for expansive research on this workforce and the care they provide. In turn, this will generate insights into modifiable factors that can be targeted to prepare, expand, and strengthen the clinical workforce to optimize care and meet demand for the growing population of people with dementia.

Introduction: Dementia affects one in three older adults over age 85 and individuals with dementia constitute the fastest growing population of patients entering hospice care. While cognitive impairment is the hallmark of dementia, behavioral symptoms are reported in nearly all patients with advanced dementia, contributing to both the complexity of end‐of‐life care and caregiver burden. Methods: This qualitative study involved semi‐structured interviews with prescribing hospice clinicians and caregivers of patients living with dementia who previously received hospice services. Interviews included questions regarding common behavioral symptoms observed at end of life, side effects of benzodiazepine and antipsychotic medications, perceived effectiveness of medications used, and non‐pharmacologic treatment strategies. Data from audio‐recorded sessions were transcribed, coded to identify relevant concepts, and reduced to determine major themes. Results: A total of 23 hospice clinicians and 20 family caregivers participated in interviews. Agitation, including physical and verbal aggression, irritability, and anger, was identified as the most concerning behavioral symptom of dementia at end of life; when discussing agitation, clinicians focused on the safety of the patient living with dementia and others, while caregivers were concerned because they perceived it as a change in personality of their loved one. When using antipsychotics and benzodiazepines to address behavioral symptoms, caregivers viewed sedation as a concerning side effect, while clinicians were less concerned and noted this as an anticipated outcome of treatment. Overall, family caregivers perceived medications as more effective than clinicians. Finally, non‐pharmacologic interventions are generally preferred over pharmacologic treatments, but were reported as difficult to implement. Conclusions: Study findings can help to inform dialogue between hospice clinicians and caregivers regarding anticipated behavioral changes, as well as risks, benefits, and limitations of medication treatment options for behavioral symptom management. Further work is needed to understand the appropriate level of use of psychotropic medications for end‐of‐life dementia care.

Background: Antipsychotic and other psychotropic medication use is prevalent among community‐dwelling older adults with dementia despite the potential for adverse effects. Two Centers for Medicare & Medicaid Services (CMS) initiatives, the National Partnership to Improve Dementia Care (“the Partnership”) and the Five Star Quality Rating System for antipsychotic use reporting, have been successful in reducing antipsychotic use in nursing home residents. We assessed if these initiatives had a spillover effect in antipsychotic and other psychotropic medication use among community dwellers with dementia due to potential overlap in prescribers across settings. Methods: Among community‐dwelling older adults with dementia, we examined psychotropic medication class use (i.e., antipsychotics, antidepressants, anxiolytics, anticonvulsants/mood stabilizers, antidementia) in 2010–2017 Medicare fee‐for‐service claims using interrupted time series analyses across three periods (“Pre‐Partnership”: July 1, 2010 to March 31, 2012; “Post‐Partnership”: April 1, 2012 to January 31, 2015; “Five Star Quality Rating”: February 1, 2015 to December 31, 2017). Results: We included 1,289,401 community dwellers with dementia contributing 26,609,697 person‐months. The mean age was 80 years, most were female (70%), approximately 80% were non‐Hispanic Whites, 10% were non‐Hispanic Blacks, and 5% were Hispanic ethnicity. Antipsychotic use was declining pre‐Partnership ( β = −0.06, 95% CI: −0.08, −0.05) and post‐Partnership ( β = −0.02, 95% CI: −0.02, −0.01). Post‐Five Star Quality Rating, antipsychotic use remained stable with a nearly flat slope ( β = −0.01, 95% CI: −0.01, 0.00). Anticonvulsant and antidepressant use increased and anxiolytic and antidementia medication use decreased among community‐dwelling older adults with dementia. Conclusions: These two CMS policies on antipsychotic use for nursing home residents were not associated with a spillover effect to community‐dwelling older adults with dementia. Strategies to monitor the appropriateness of psychotropic medication use may be warranted for community‐dwellers with dementia.