Association between physician age and patterns of end-of-life care among older Americans.

BACKGROUND: End-of-life (EOL) care patterns may differ by physician age given differences in how physicians are trained or changes associated with aging. We sought to compare patterns of EOL care delivered to older Americans according to physician age. METHODS: We conducted a cross-sectional study of a 20% sample of Medicare fee-for-service beneficiaries aged ≥66 years who died in 2016-2019 (n = 487,293). We attributed beneficiaries to the physician who had >50% of primary care visits during the last 6 months of life. We compared beneficiary-level outcomes by physician age (<40, 40-49, 50-59, or ≥60) in two areas: (1) advance care planning (ACP) and palliative care; and (2) high-intensity care at the EOL. RESULTS: Beneficiaries attributed to younger physicians had slightly higher proportions of billed ACP (adjusted proportions, 17.1%, 16.1%, 15.5%, and 14.0% for physicians aged <40, 40-49, 50-59, and ≥60, respectively; p-for-trend adjusted for multiple comparisons <0.001) and palliative care counseling or hospice use in the last 180 days of life (64.5%, 63.6%, 61.9%, and 60.8%; p-for-trend <0.001). Similarly, physicians' younger age was associated with slightly lower proportions of emergency department visits (57.4%, 57.0%, 57.4%, and 58.1%; p-for-trend <0.001), hospital admissions (51.2%, 51.1%, 51.4%, and 52.1%; p-for-trend <0.001), intensive care unit admissions (27.8%, 27.9%, 28.2%, and 28.3%; p-for-trend = 0.03), or mechanical ventilation or cardiopulmonary resuscitation (14.2, 14.9%, 15.2%, and 15.3%; p-for-trend <0.001) in the last 30 days of life, and in-hospital death (20.2%, 20.6%, 21.3%, and 21.5%; p-for-trend <0.001). CONCLUSIONS: We found that differences in patterns of EOL care between beneficiaries cared for by younger and older physicians were small, and thus, not clinically meaningful. Future research is warranted to understand the factors that can influence patterns of EOL care provided by physicians, including initial and continuing medical education.

Validation of a Rule-Based ICD-10-CM Algorithm to Detect Fall Injuries in Medicare Data.

BACKGROUND: Diagnosis-code-based algorithms to identify fall injuries in Medicare data are useful for ascertaining outcomes in interventional and observational studies. However, these algorithms have not been validated against a fully external reference standard, in ICD-10-CM, or in Medicare Advantage (MA) data. METHODS: We linked self-reported fall injuries leading to medical attention (FIMA) from the Strategies to Reduce Injuries and Develop Confidence in Elders (STRIDE) trial (reference standard) to Medicare fee-for-service (FFS) and MA data from 2015-19. We measured the area under the receiver operating characteristic curve (AUC) based on sensitivity and specificity of a diagnosis-code-based algorithm against the reference standard for presence or absence of ≥1 FIMA within a specified window of dates, varying the window size to obtain points on the curve. We stratified results by source (FFS vs MA), trial arm (intervention vs control), and STRIDE's 10 participating health care systems. RESULTS: Both reference standard data and Medicare data were available for 4 941 (of 5 451) participants. The reference standard and algorithm identified 2 054 and 2 067 FIMA, respectively. The algorithm had 45% sensitivity (95% confidence interval [CI]: 43%-47%) and 99% specificity (95% CI: 99%-99%) to identify reference standard FIMA within the same calendar month. The AUC was 0.79 (95% CI: 0.78-0.81) and was similar by FFS or MA data source and by trial arm but showed variation among STRIDE health care systems (AUC range by health care system, 0.71 to 0.84). CONCLUSIONS: An ICD-10-CM algorithm to identify fall injuries demonstrated acceptable performance against an external reference standard, in both MA and FFS data.

Demographics, Symptoms, Psychotropic Use, and Caregiver Distress in Patients With Early vs Late Onset Dementia.

BACKGROUND: Understanding experiences and challenges faced by persons living with Early-Onset Dementia (EOD) compared to individuals diagnosed with Late-Onset Dementia (LOD) is important for the development of targeted interventions. OBJECTIVE: Describe differences in sociodemographic, neuropsychiatric behavioral symptoms, caregiver characteristics, and psychotropic use. DESIGN, SETTING, PARTICIPANTS: Cross-sectional, retrospective study including 908 UCLA Alzheimer's Dementia Care Program participants (177 with EOD and 731 with LOD). MEASUREMENTS: Onset of dementia was determined using age at program enrollment, with EOD defined as age <65 years and LOD defined as age >80 years. Sociodemographic and clinical characteristics were measured once at enrollment. Behavioral symptoms were measured using the Neuropsychiatric Inventory Questionnaire (NPI-Q) severity score and caregiver distress was measured using the NPI-Q distress score. Medications included antipsychotic, antidepressant, benzodiazepines and other hypnotics, antiepileptics, and dementia medications. RESULTS: EOD compared to LOD participants were more likely men, college graduates, married, live alone, and have fewer comorbidities. EOD caregivers were more often spouses (56% vs 26%, p <0.01), whereas LOD caregivers were more often children (57% vs 10%, p <0.01). EOD was associated with lower odds of being above the median (worse) NPI-Q severity (adjusted odds ratio [aOR], 0.58; 95% CI 0.35-0.96) and NPI-Q distress scores (aOR, 0.53; 95% CI 0.31-0.88). Psychotropic use did not differ between groups though symptoms were greater for LOD compared to EOD. CONCLUSION: Persons with EOD compared to LOD had sociodemographic differences, less health conditions, and fewer neuropsychiatric symptoms. Future policies could prioritize counseling for EOD patients and families, along with programs to support spousal caregivers of persons with EOD.

Dementia Prevention and Treatment: A Narrative Review.

Importance: Dementia affects 10% of those 65 years or older and 35% of those 90 years or older, often with profound cognitive, behavioral, and functional consequences. As the baby boomers and subsequent generations age, effective preventive and treatment strategies will assume increasing importance. Observations: Preventive measures are aimed at modifiable risk factors, many of which have been identified. To date, no randomized clinical trial data conclusively confirm that interventions of any kind can prevent dementia. Nevertheless, addressing risk factors may have other health benefits and should be considered. Alzheimer disease can be treated with cholinesterase inhibitors, memantine, and antiamyloid immunomodulators, with the last modestly slowing cognitive and functional decline in people with mild cognitive impairment or mild dementia due to Alzheimer disease. Cholinesterase inhibitors and memantine may benefit persons with other types of dementia, including dementia with Lewy bodies, Parkinson disease dementia, vascular dementia, and dementia due to traumatic brain injury. Behavioral and psychological symptoms of dementia are best treated with nonpharmacologic management, including identifying and mitigating the underlying causes and individually tailored behavioral approaches. Psychotropic medications have minimal evidence of efficacy for treating these symptoms and are associated with increased mortality and clinically meaningful risks of falls and cognitive decline. Several emerging prevention and treatment strategies hold promise to improve dementia care in the future. Conclusions and Relevance: Although current prevention and treatment approaches to dementia have been less than optimally successful, substantial investments in dementia research will undoubtedly provide new answers to reducing the burden of dementia worldwide.

The dementia care study (D-CARE): Recruitment strategies and demographic characteristics of participants in a pragmatic randomized trial of dementia care.

INTRODUCTION: Pragmatic research studies that include diverse dyads of persons living with dementia (PLWD) and their family caregivers are rare. METHODS: Community-dwelling dyads were recruited for a pragmatic clinical trial evaluating three approaches to dementia care. Four clinical trial sites used shared and site-specific recruitment strategies to enroll health system patients. RESULTS: Electronic health record (EHR) queries of patients with a diagnosis of dementia and engagement of their clinicians were the main recruitment strategies. A total of 2176 dyads were enrolled, with 80% recruited after the onset of the pandemic. PLWD had a mean age of 80.6 years (SD 8.5), 58.4% were women, and 8.8% were Hispanic/Latino, and 11.9% were Black/African American. Caregivers were mostly children of the PLWD (46.5%) or spouses/partners (45.2%), 75.8% were women, 9.4% were Hispanic/Latino, and 11.6% were Black/African American. DISCUSSION: Health systems can successfully enroll diverse dyads in a pragmatic clinical trial.

Costs of fall injuries in the STRIDE study: an economic evaluation of healthcare system heterogeneity and heterogeneity of treatment effect.

OBJECTIVES: The Strategies to Reduce Injuries and Develop Confidence in Elders (STRIDE) Study cluster-randomized 86 primary care practices in 10 healthcare systems to a patient-centered multifactorial fall injury prevention intervention or enhanced usual care, enrolling 5451 participants. We estimated total healthcare costs from participant-reported fall injuries receiving medical attention (FIMA) that were averted by the STRIDE intervention and tested for healthcare-system-level heterogeneity and heterogeneity of treatment effect (HTE). METHODS: Participants were community-dwelling adults age ≥ 70 at increased fall injury risk. We estimated practice-level total costs per person-year of follow-up (PYF), assigning unit costs to FIMA with and without an overnight hospital stay. Using independent variables for treatment arm, healthcare system, and their interaction, we fit a generalized linear model with log link, log follow-up time offset, and Tweedie error distribution. RESULTS: Unadjusted total costs per PYF were $2,034 (intervention) and $2,289 (control). The adjusted (intervention minus control) cost difference per PYF was -$167 (95% confidence interval (CI), -$491, $216). Cost heterogeneity by healthcare system was present (p = 0.035), as well as HTE (p = 0.090). Adjusted total costs per PYF in control practices varied from $1,529 to $3,684 for individual healthcare systems; one system with mean intervention minus control costs of -$2092 (95% CI, -$3,686 to -$944) per PYF accounted for HTE, but not healthcare system cost heterogeneity. CONCLUSIONS: We observed substantial heterogeneity of healthcare system costs in the STRIDE study, with small reductions in healthcare costs for FIMA in the STRIDE intervention accounted for by a single healthcare system. TRIAL REGISTRATION: Clinicaltrials.gov (NCT02475850).

Association between physicians' geriatric training and patterns of end-of-life care delivered to persons with dementia.

BACKGROUND: Geriatric training is designed to prepare physicians to meet the complex needs of older adults, including persons with dementia at the end-of-life (EOL) stage. We sought to compare patterns of EOL care delivered to persons with dementia between physicians with versus without geriatric training. METHODS: We conducted a cross-sectional study of a 20% random sample of fee-for-service Medicare beneficiaries with dementia who died in 2016-2018 (n = 99,631). We attributed beneficiaries to a physician who had the largest number of primary care visits during the last 6 months of life and determined whether the physician was trained in geriatrics. Our outcome measures included: (i) advance care planning (ACP) and palliative care (e.g., ACP, hospice enrollment in the last 90 days of life), and (ii) high-intensity EOL care (e.g., emergency department visits or hospital admissions in the last 30 days of life). RESULTS: Beneficiaries with dementia under the care of physicians with geriatric training had a higher proportion of ACP (adjusted proportion, 15.8% vs. 13.0%; p < 0.001 after accounting for multiple comparisons), palliative care counseling (22.4% vs. 20.9%; p = 0.01), and hospice enrollment (63.7% vs. 60.6%; p < 0.001). Geriatric training was also associated with a lower proportion of emergency department visits (55.1% vs. 59.1%; p < 0.001), hospital admissions (48.8% vs. 52.3%; p < 0.001), ICU admissions (24.9% vs. 27.4%; p < 0.001), use of mechanical ventilation (11.2% vs. 13.0%; p < 0.001), and use of cardiopulmonary resuscitation (2.1% vs. 2.4%; p = 0.03) in the last 30 days of life. There was no evidence that the placement of feeding tubes differed between the two groups. CONCLUSIONS: Physicians' geriatric training was associated with the receipt of more ACP and palliative care and less intensive EOL care among persons with dementia. Provision of geriatric training for physicians may have the potential to improve the quality of EOL care delivered to persons with dementia.

The Other Dementia Breakthrough-Comprehensive Dementia Care.

This Viewpoint describes barriers to comprehensive dementia care and proposes strategies for overcoming them.

A population-based, electronic health record-guided approach to improve the quality of dementia care.

BACKGROUND: The quality of care of the 6.5 million Americans living with dementia has been suboptimal, leading to worse outcomes and higher costs. Few health systems have formal systems in place to guide the care of these patients. To help improve the care of persons living with dementia, we developed and preliminarily evaluated the effectiveness of electronic health record (EHR)-generated recommendations for patients with dementia. METHODS: This quality improvement study was conducted from October 2020 through June 2022 at a single academic healthcare system and included patients identified as having dementia on their problem list and their physicians. Ten (seven outpatient and three inpatient) algorithms based on clinical logic and evidence were embedded in an EHR system to generate specific recommendations based on combinations of utilization, diagnosis, and medications. The number of each type of recommendation generated, and orders for each type of recommendation were recorded, as well as physician's perceptions of this approach. RESULTS: Three thousand six hundred and nine recommendations on 763 patients were triggered by the algorithms in the outpatient setting, and 185 referrals were placed. The most common recommendations were for ongoing care through the UCLA Alzheimer's and Dementia Care program, Palliative Care, the Extensivist Clinic, Urogynecology, and Clinical Pharmacy. The most commonly acted upon by providers were recommendations for referral to Pharmacists and the UCLA Alzheimer's and Dementia Care program. The most common reason for not responding to specific recommendations was that these were not perceived as relevant to the patient. Compared to general medicine physicians, geriatricians felt more comfortable managing dementia care without a referral to a service (23% (95% CI 15%-34%) versus 3% (95% CI 0%-17%), p = 0.012) and less commonly felt the recommendation was appropriate (1% (95% CI 0%-7%) versus 13% (95% CI 4%-30%), p = 0.02). CONCLUSIONS: EHR-generated algorithms can help guide patients with dementia to appropriate clinical services.

Life satisfaction among persons living with dementia and those without dementia.

BACKGROUND: Despite possible major adverse cognitive, physical, social, and behavioral consequences, little is known about how persons living with dementia perceive satisfaction with life, a key component of well-being. We sought to examine (i) whether persons living with dementia perceive a lower level of satisfaction compared to their peers without dementia and (ii) whether the associations between individual characteristics and life satisfaction are different between persons living with and without dementia. METHODS: Using a nationally representative sample of community-dwelling older adults aged ≥70 years in the U.S. from the Health and Retirement Study, we compared scores on the Satisfaction with Life Scale (SWLS), a self-reported 5-item scale ranging from 1 to 7 (more satisfaction), between persons with probable dementia (n = 341) and those without (n = 5530), adjusting for individual characteristics. We also tested whether the associations between the individual characteristics and SWLS differ by dementia status. RESULTS: Scores on SWLS did not differ between persons with probable dementia and those without when adjusting for individual characteristics including limitations in activities of daily living (ADL) (adjusted difference, -0.09; 95% CI, -0.33 to +0.15; p-value, 0.45). However, dementia status was associated with lower life satisfaction through the mediation of limitations in ADL (total effect, -0.29; bootstrapped 95% CI, -0.47 to -0.12). Most individual characteristics associated with lower life satisfaction were similar in the two groups, including younger age, more limitations in ADL, and depression. Less wealth was associated with lower satisfaction among persons without dementia but not among those with probable dementia. CONCLUSIONS: Dementia status was only modestly associated with lower life satisfaction through the mediation of limitations in ADL among participants who were able to provide response. Future research is warranted to determine whether life satisfaction can be used as a meaningful outcome when evaluating well-being among persons living with dementia.

Chronic disease management: why dementia care is different.

With the rise in the population of older adults, the number of individuals living with chronic diseases that need management will increase dramatically. Successful programs have been developed for chronic conditions (eg, heart failure, diabetes, asthma, chronic obstructive pulmonary disease) that use principles of self-management, monitoring, and care coordination. However, because of the effects of dementia on the mind including behavioral complications, the progressive loss of capacity for affected individuals to participate in care or decision-making, the devastating effects on care partners, and the scope of disease management beyond medical issues, the management of dementia is different and demands different approaches. The success of dementia management will depend upon how well the care provided is able to maximize the function, independence, and dignity of the individual living with dementia while minimizing care partner strain and burnout.

Effect of the STRIDE fall injury prevention intervention on falls, fall injuries, and health-related quality of life.

BACKGROUND: Falls are common in older adults and can lead to severe injuries. The Strategies to Reduce Injuries and Develop Confidence in Elders (STRIDE) trial cluster-randomized 86 primary care practices across 10 health systems to a multifactorial intervention to prevent fall injuries, delivered by registered nurses trained as falls care managers, or enhanced usual care. STRIDE enrolled 5451 community-dwelling older adults age ≥70 at increased fall injury risk. METHODS: We assessed fall-related outcomes via telephone interviews of participants (or proxies) every 4 months. At baseline, 12 and 24 months, we assessed health-related quality of life (HRQOL) using the EQ-5D-5L and EQ-VAS. We used Poisson models to assess intervention effects on falls, fall-related fractures, fall injuries leading to hospital admission, and fall injuries leading to medical attention. We used hierarchical longitudinal linear models to assess HRQOL. RESULTS: For recurrent event models, intervention versus control incidence rate ratios were 0.97 (95% confidence interval [CI], 0.93-1.00; p = 0.048) for falls, 0.93 (95% CI, 0.80-1.08; p = 0.337) for self-reported fractures, 0.89 (95% CI, 0.73-1.07; p = 0.205) for adjudicated fractures, 0.91 (95% CI, 0.77-1.07; p = 0.263) for falls leading to hospital admission, and 0.97 (95% CI, 0.89-1.06; p = 0.477) for falls leading to medical attention. Similar effect sizes (non-significant) were obtained for dichotomous outcomes (e.g., participants with ≥1 events). The difference in least square mean change over time in EQ-5D-5L (intervention minus control) was 0.009 (95% CI, -0.002 to 0.019; p = 0.106) at 12 months and 0.005 (95% CI, -0.006 to 0.015; p = 0.384) at 24 months. CONCLUSIONS: Across a standard set of outcomes typically reported in fall prevention studies, we observed modest improvements, one of which was statistically significant. Future work should focus on patient-, practice-, and organization-level operational strategies to increase the real-world effectiveness of interventions, and improving the ability to detect small but potentially meaningful clinical effects. CLINICALTRIALS: gov identifier: NCT02475850.

Engagement of older adults in STRIDE's multifactorial fall injury prevention intervention.

BACKGROUND: Evidence-based multifactorial fall prevention interventions in clinical practice have been less effective than expected. One plausible reason is that older adults' engagement in fall prevention care is suboptimal. METHODS: This was a post-hoc analysis of 2403 older adults' engagement in a multifactorial fall prevention intervention in the Strategies to Reduce Injuries and Develop Confidence in Elders (STRIDE) pragmatic trial. Based on the direct clinical care level of the Patient and Family Continuum of Engagement (CE) framework, three indicators of progressively interactive engagement were assessed: (1) Consultation (receiving information), (2) Involvement (prioritizing risks), and (3) Partnership (identifying prevention actions). Drop off at each step was determined as well as predictors of engagement. RESULTS: The participants' engagement waned with increasingly interactive CE domains. Although all participants received information about their positive fall risk factors (consultation) and most (51%-96%) prioritized them (involvement), fewer participants (33%-55%) identified fall prevention actions (partnership) for most of their risk factors, except for strength gait or balance problems (95%). More participants (70%) identified home exercises than other actions. Finally, fall prevention actions were identified more commonly among participants who received two visits compared to one (OR = 2.33 [95% CI, 2.06-2.64]), were ≥80 years old (OR = 1.83 [95% CI, 1.51-2.23]), and had fewer fall risk factors (OR = 0.90 [95% CI, 0.83-0.99]). CONCLUSIONS: The drop-off in participants' engagement based on the level of their interaction with clinicians suggests that future multifactorial fall prevention interventions need to be more focused on interactive patient-clinician partnerships that help older adults increase and maintain fall prevention actions. Our analyses suggest that more frequent contact with clinicians and more monitoring of the implementation and outcomes of Fall Prevention Care Plans could potentially improve engagement and help older adults maintain fall prevention actions.

Dissemination of a successful dementia care program: Lessons to facilitate spread of innovations.

BACKGROUND: Despite the effectiveness of innovations to improve the care of persons with dementia, there has been limited diffusion of these into widespread clinical practice. We aimed to identify common barriers and address them directly in the initial phase of dissemination of a successful dementia care program. METHODS: Description of and early experience with a dissemination strategy of the UCLA Alzheimer's and Dementia Care Program to health care systems nationwide. We measured site-identified goals for the program and indicators of success, number of adopting sites, and participants in their programs. RESULTS: From January 2019 to December 2021, 80 sites expressed interest in adopting the program, 14 (18%) sites adopted it, and 10 of these sites have begun caring for patients. Another 4 sites have implemented the program as part of a randomized clinical trial. To date, over 1690 persons living with dementia and their caregivers have received Alzheimer's and Dementia Care (ADC) care at 14 adopting sites. Key lessons from the early dissemination efforts include the importance of identifying a strong product champion at the adopting site, creating a business case for adoption, training of clinical staff and adapting the model to fit local cultures and workflow, as well as recognizing the likely long length of time needed for the decision to adopt and implementation process. CONCLUSIONS: Despite many obstacles to dissemination, with local champions and technical assistance, successful innovations in dementia care can be implemented in diverse health systems. The ability to adopt sites to bring the program to full scale and achieve comparable outcomes to the original program remains to be determined.

Dissemination of a successful dementia care program: Lessons from early adopters.

BACKGROUND: Evidence-based models for providing effective and comprehensive care for Alzheimer's disease and related dementias exist but have yet to be successfully implemented at scale. The Alzheimer's and Dementia Care Program (ADC Program) is an effective comprehensive dementia care model that is being disseminated across the United States. This qualitative study examines barriers and facilitators to implementing the model among early adopting sites. METHODS: This study included semi-structured interviews with a total of 21 clinical site leaders and Dementia Care Specialists from a total of 11 sites across the US. Interviews were audio recorded, transcribed, and coded using Dedoose qualitative analysis software. Coding scheme development and data interpretation were informed by Rogers' Diffusion of Innovations framework. RESULTS: Key themes are organized in line with Rogers' framework. These include: the innovation-decision process, implementation and characteristics of the innovation, and sustainability. CONCLUSIONS: Across the three overarching themes presented in this manuscript, the importance of engagement from site leaders, the multifaceted nature of the dementia care specialist role, and the value of technical assistance from qualified experts are apparent. However, for this work to continue to be successful, there needs to be more appropriate payment to cover needed services and a mechanism for supporting comprehensive dementia care over time.

Trends in advance care planning and end-of-life care among persons living with dementia requiring surrogate decision-making.

BACKGROUND: Previous studies have demonstrated positive impacts of advance care planning (ACP) on end-of-life (EOL) care. We sought to examine trends in ACP and EOL care intensity among persons living with dementia who required surrogate decision-making in their final days of life. METHODS: We analyzed the participants of the Health and Retirement Study (HRS), a nationally representative longitudinal panel study of U.S. residents, with dementia 70 years and older who required surrogate decision-making in the final days of life and died between 2000 and 2014. Based on surrogate reports after the death of a participant, our study measured the completion of three specific types of patient-engaged ACP (written EOL care instructions, assignment of a durable power of attorney for healthcare, patient engagement in EOL care discussions) and four measures of EOL care in the final days of life (death in hospital, receipt of life-prolonging treatments, limiting or withholding certain treatments, and receipt of comfort-oriented care). All analyses accounted for the complex survey design of HRS. RESULTS: Among 870 adults (weighted N = 2,812,380) with dementia who died in 2000-2014 and required surrogate decision-making at EOL, only 34.8% of patients participated in all three aspects of ACP, and there was not a significant increase in ACP completion between 2000 and 2014. The receipt of life-prolonging treatments in the final days of life has increased over time (adjusted change per year, 1.4 percentage points [pp]; 95% CI, 0.5 to 2.2 pp; P-for-trend = 0.002), while the percentage of death in hospital, limiting or withholding certain treatments, or comfort-oriented care did not change. CONCLUSIONS: Our findings suggest that the rates of ACP completion have not increased over time despite its potential benefits and life-prolonging treatments are still common among PLWD who require surrogate decision-making, a population who might benefit greatly from early ACP.

Overwhelmed: a Dementia Caregiver Vital Sign.

BACKGROUND: The emotional stress of caring for someone with Alzheimer's disease and related dementias is high and results in adverse effects on caregivers and the persons living with disease. In preliminary work, caregiver reports of regularly feeling "completely overwhelmed" were associated with lack of measurable clinical benefit from a comprehensive dementia care program. OBJECTIVE: To examine the sociodemographic and clinical characteristics of all caregivers who felt overwhelmed at entry into a comprehensive dementia care program, the trajectory of this symptom over 1 year, and its predictive value for 1-year caregiver outcomes. DESIGN: Longitudinal cohort study SETTING: Academic health center PARTICIPANTS: Caregivers of patients enrolled in a comprehensive dementia care program EXPOSURES: Caregiver report of feeling "completely overwhelmed" at baseline MAIN MEASURES: Caregiver report of feeling "completely overwhelmed" at baseline and 1 year, and validated scales of caregiver strain, distress, depressive symptoms, burden, mortality, and long-term nursing home placement KEY RESULTS: Compared to caregivers who were not overwhelmed, overwhelmed caregivers had more distress from behavioral symptoms of the person living with dementia, worse depression scores, and higher composite dementia burden scores at baseline. They also had worse depressive symptoms, strain, and composite burden scores at 1 year, after adjustment for baseline scores. Having an overwhelmed caregiver did not predict long-term nursing home placement or mortality among persons with dementia. CONCLUSIONS: A single question about whether a caregiver is overwhelmed might indicate caregivers who have considerable current and future symptom burden and who may benefit from increased support and resources.