Introduction The dementia experience is not a monolithic phenomenon—and while core elements of dementia are considered universal—people living with dementia experience the disorder differently. Understanding the patterning of Alzheimer's disease and related dementias (ADRD) in the population with regards to incidence, risk factors, impacts on dementia care, and economic costs associated with ADRD can provide clues to target risk and protective factors for all populations as well as addressing health disparities. Methods We discuss information presented at the 2020 National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers, Theme 1: Impact of Dementia. In this article, we describe select population trends, care interventions, and economic impacts, health disparities and implications for future research from the perspective of our diverse panel comprised of academic stakeholders, and persons living with dementia, and care partners. Results Dementia incidence is decreasing yet the advances in population health are uneven. Studies examining the educational, geographic and race/ethnic distribution of ADRD have identified clear disparities. Disparities in health and healthcare may be amplified by significant gaps in the evidence base for pharmacological and non‐pharmacological interventions. The economic costs for persons living with dementia and the value of family care partners' time are high, and may persist into future generations. Conclusions Significant research gaps remain. Ensuring that ADRD healthcare services and long‐term care services and supports are accessible, affordable, and effective for all segments of our population is essential for health equity. Policy‐level interventions are in short supply to redress broad unmet needs and systemic sources of disparities. Whole of society challenges demand research producing whole of society solutions. The urgency, complexity, and scale merit a “whole of government” approach involving collaboration across numerous federal agencies.

Key Points Question Are there differences between Black and White patients in the use of hospice and intensity of end-of-life treatment? Findings In this cohort study of 1212 decedents, Black individuals were significantly less likely to use hospice and more likely to have multiple emergency department visits and hospitalizations and undergo intensive treatment in the last 6 months of life compared with White individuals regardless of cause of death. Meaning Despite the increase in the use of hospice care in recent decades, racial disparities in the use of hospice care and the intensity of end-of-life treatment remain.

Background and Objectives Racial disparities in health and socioeconomic characteristics of older adults have implications for the experiences of their family and unpaid caregivers, but knowledge to date has primarily drawn from convenience samples. Using a population-based sample, we examine associations between caregiver race and caregiving-related effects. Research Design and Methods Study participants include white (n = 992) and black (n = 556) respondents to the 2015 National Study of Caregiving who assisted community-dwelling older adults with disabilities who participated in the National Health and Aging Trends Study. Guided by Pearlin’s Stress Process Model, hierarchical logistic regression models were constructed to examine race differences in caregiving-related effects after adjusting for caregiving context, stressors, and resources. Results Relative to white caregivers, blacks more often provided in excess of 40 hr of care per week (54.3% vs 38.6%) and more often cared for an older adult with dementia (27.1% vs 20.7%) who was living below the federal poverty line (31.7% vs 11.9%) or was Medicaid-eligible (42.2% vs 11.8%). Black caregivers more often used supportive services (32.9% vs 24.8%). In fully adjusted regression models, black caregivers were more likely to report gains and less likely to report emotional difficulty than whites. Service utilization did not attenuate caregiving-related emotional difficulty or participation restrictions, regardless of race. Discussion and Implications Findings highlight caregiving disparities and counterintuitive differences in experiences and indicate the importance of identifying supports such as paid family leave and faith and community-based programming to better support community-dwelling low-income older adults and their family and unpaid caregivers.

Background and Objectives Studies comparing racial/ethnic differences on measures of psychological and physical well-being for dementia caregivers have reported differences between minority and white caregivers. Recruitment methods often differ for minority and white participants due to enrollment targets and may lead to biased comparisons, especially in convenience samples. We aimed to examine racial/ethnic differences in dementia caregiver outcomes and to determine whether differences vary between studies with population-based or convenience samples. Research Design and Methods We systematically reviewed articles with primary data from PubMed, Google Scholar, and PsycINFO. We included studies comparing African American or Hispanic/Latino to white dementia caregivers on measures of psychological well-being or physical well-being. Reviewers screened titles and abstracts, reviewed full texts and conducted risk-of-bias assessments. Meta-analyses were conducted to assess effects by race/ethnicity and study bias. Results A total of 159 effects were extracted from 38 studies, 2 of which were population based. Random-effects models revealed small but statistically significant effects with better psychological well-being in African American caregivers compared with white caregivers in both population-based (d = −0.22) and convenience sample studies (d = −0.21). Hispanics/Latino caregivers reported lower levels of physical well-being than white caregivers (d = 0.12), though these effects varied by level of rated study bias. Discussion and Implications Consistency across study methods raises confidence in the validity of previous reports of better psychological well-being in African American caregivers. Future studies should use population-based samples with subgroups of Hispanic/Latino, Asian American, and American Indian caregivers that are culturally distinct on factors such as country of origin and tribe.