OBJECTIVE:Caring for the elderly with dementia imposes a substantial burden on family members and likely accounts for more than half of the total cost of dementia for those living in the community. However, most past estimates of this cost were derived from small, nonrepresentative samples. We sought to obtain nationally representative estimates of the time and associated cost of informal caregiving for the elderly with mild, moderate, and severe dementia. DESIGN:Multivariable regression models using data from the 1993 Asset and Health Dynamics Study, a nationally representative survey of people age 70 years or older (N = 7,443).SETTING: National population-based sample of the community-dwelling elderly. MAIN OUTCOME MEASURES:Incremental weekly hours of informal caregiving and incremental cost of caregiver time for those with mild dementia, moderate dementia, and severe dementia, as compared to elderly individuals with normal cognition. Dementia severity was defined using the Telephone Interview for Cognitive Status. R E S U L T S :A f te r a d j u s t i n g fo r s oc i o d e m o g r a p h i c s , comorbidities, and potential caregiving network, those with normal cognition received an average of 4.6 hours per week of informal care. Those with mild dementia received an additional 8.5 hours per week of informal care compared to those with normal cognition (P < .001), while those with moderate and severe dementia received an additional 17.4 and 41.5 hours (P < .001), respectively. The associated additional yearly cost of informal care per case was $3,630 for mild dementia, $7,420 for moderate dementia, and $17,700 for severe dementia. This represents a national annual cost of more than $18 billion. CONCLUSION:The quantity and associated economic cost of informal caregiving for the elderly with dementia are substantial and increase sharply as cognitive impairment worsens. Physicians caring for elderly individuals with dementia should be mindful of the importance of informal care for the well-being of their patients, as well as the potential for significant burden on those (often elderly) individuals providing the care.

ImportanceNationally representative data are critical for understanding the causes, costs, and outcomes associated with dementia and mild cognitive impairment (MCI) in the US and can inform policies aimed at reducing the impact of these conditions on patients, families, and public programs. The nationally representative Health and Retirement Study (HRS) is an essential resource for such data, but the HRS substudy providing dementia diagnostic information was fielded more than 20 years ago and more recent data are needed.ObjectiveThe Harmonized Cognitive Assessment Protocol (HCAP) was developed to update national estimates of the prevalence of MCI and dementia in the US and examine differences by age, race, ethnicity, and sex.Design, Setting, and ParticipantsHRS is an ongoing longitudinal nationally representative study of people 51 years and older with staggered entry dates from 1992 to 2022 and follow-up ranging from 4 to 30 years. HCAP is a cross-sectional random sample of individuals in HRS who were 65 years or older in 2016. Of 9972 age-eligible HRS participants, 4425 were randomly selected for HCAP, and 3496 completed a comprehensive neuropsychological test battery and informant interview, none of whom were excluded. Dementia and MCI were classified using an algorithm based on standard diagnostic criteria and comparing test performance to a robust normative sample.ExposuresGroups were stratified by age, sex, education, race, and ethnicity.Main Outcomes and MeasuresNational prevalence estimates using population weights.ResultsThe mean (SD) age of the study population sample (N = 3496) was 76.4 (7.6) years, and 2095 participants (60%) were female. There were 551 participants who self-identified as Black and not Hispanic (16%), 382 who self-identified as Hispanic regardless of race (16%), 2483 who self-identified as White and not Hispanic (71%), and 80 who self-identified as another race (2%), including American Indian or Alaska Native, Asian, Native Hawaiian or Pacific Islander, or another self-described race. A total of 393 individuals (10%; 95% CI, 9-11) were classified as having dementia and 804 (22%; 95% CI, 20-24) as having MCI. Every 5-year increase in age was associated with higher risk of dementia (weighted odds ratio [OR], 1.95 per 5-year age difference; 95%, CI, 1.77-2.14) and MCI (OR, 1.17 per 5-year age difference, 95% CI, 1.09-1.26). Each additional year of education was associated with a decrease in risk of dementia (OR, 0.93 per year of school, 95% CI, 0.89-0.97) and MCI (OR, 0.94, 95% CI, 0.91-0.97). Dementia was more common among non-Hispanic Black individuals (OR, 1.81; 95% CI, 1.20-2.75) and MCI in Hispanic individuals (OR, 1.42; 95% CI, 1.03-1.96) compared with non-Hispanic White individuals. Other group comparisons by race and ethnicity were not possible owing to small numbers. No differences in prevalence were found between female individuals and male individuals.Conclusions and RelevanceUsing a comprehensive neuropsychological test battery and large sample, the national prevalence of dementia and MCI in 2016 found in this cross-sectional study was similar to that of other US-based studies, indicating a disproportionate burden of dementia and MCI among older Black and Hispanic adults and those with lower education.

Introduction: Prior estimates of dementia prevalence in India were based on samples from selected communities, inadequately representing the national and state populations.Methods: From the Longitudinal Aging Study in India (LASI) we recruited a sample of adults ages 60+ and administered a rich battery of neuropsychological tests and an informant interview in 2018 through 2020. We obtained a clinical consensus rating of dementia status for a subsample (N = 2528), fitted a logistic model for dementia status on this subsample, and then imputed dementia status for all other LASI respondents aged 60+ (N = 28,949). Results:The estimated dementia prevalence for adults ages 60+ in India is 7.4%, with significant age and education gradients, sex and urban/rural differences, and cross-state variation.Discussion: An estimated 8.8 million Indians older than 60 years have dementia. The burden of dementia cases is unevenly distributed across states and subpopulations and may therefore require different levels of local planning and support.