ADRD

Perceived Control, Cognitive Training, and Incident Alzheimer's Disease and Related Dementias in the ACTIVE Study

Greater perception of control over important life outcomes has been linked to better cognitive performance and greater benefits from cognitive training interventions among older adults. However, it is not yet known whether perceived control predicts incident Alzheimer’s disease and related dementias (ADRD) or influences links between cognitive training and ADRD incidence.

Data were obtained from 2,021 participants in the Advanced Cognitive Training for Independent and Vital Elderly (ACTIVE) trial. Baseline perceived control was measured with the Personality in Intellectual Aging Contexts Inventory. Incident diagnosed ADRD over 20 years was operationalized using Centers for Medicare and Medicaid Services claims data. Main effects of perceived control and interactions between perceived control and intervention group (reasoning, memory, speed, control) on diagnosed ADRD incidence were estimated using cause-specific hazard models.

Greater perceived control at study baseline was associated with reduced hazard of ADRD. Perceived control did not moderate associations between intervention group and time to ADRD diagnosis.

Strengthening perceived control through individual and/or environmental interventions may lower ADRD risk.

Laura B Zahodne, Katherine Miller, Chuxuan Sun, Neika Sharifian, Jeanine M Parisi, George W Rebok, Adrienne T Aiken-Morgan, Alden L Gross, Kelsey R Thomas, Cynthia Felix, Norma B Coe, Perceived Control, Cognitive Training, and Incident Alzheimer’s Disease and Related Dementias in the ACTIVE Study, The Journals of Gerontology: Series B, Volume 80, Issue 7, July 2025, gbaf086, https://doi.org/10.1093/geronb/gbaf086

Money may matter: Financial hardship and its association with satisfaction of care among people living with dementia

No abstract available

Miller KEM, White L, Coe NB, Khandelwal N: Money may matter: Financial hardship and its association with satisfaction of care among people living with dementia. Journal of the American Geriatrics Society 72(4): 1272-1274, Apr 2024.

Changing places: Longitudinal trends in living arrangements of persons living with dementia

No abstract available

White LLY, Sun C, Coe NB: Changing places: Longitudinal trends in living arrangements of persons living with dementia. The Journal of the American Geriatrics Society 72(3): 928-930, Mar 2024.

Caregiving for Dementia: Trends pre-post onset and predictive factors of family caregiving (2002-2018)

Persons living with Alzheimer's and other related forms of dementia rely heavily on care from family and friends for assistance with daily activities ("family care"), but little is known about care transitions over time. We analyzed data from the Health and Retirement Study to describe caregiving patterns, from 2 years before dementia onset and up to 6 years after. Using sociodemographic data from the interview prior to dementia onset, we determined if there are significant factors that predict receipt of family care at dementia onset. We found that one-third (33%) of people living with dementia were receiving help with daily activities 2 years prior to their first positive dementia screen and this increased to 60% during the first positive screen. Nearly all of those receiving assistance received family care. We found multiple significant predictors of receiving family care at onset, including race, education, access to private health insurance, number of activities of daily living that were difficult, number of chronic conditions, and already receiving help. This demonstrates potential gaps in dementia care, and which subpopulations may benefit most from targeted interventions for household members who do not have adequate caregiving resources or programs that provide additional formal care.

Ingraham BC, Barthold D, Fishman P, Coe NB: Caregiving for Dementia: Trends pre-post onset and predictive factors of family caregiving (2002-2018). Health Affairs Scholar 2(3): qxae020, Mar 2024.

Let's Not Repeat History's Mistakes: Two Cautions to Scientists on the Use of Race in Alzheimer's Disease and Alzheimer's Disease Related Dementias Research

Alzheimer's disease and Alzheimer's disease related dementias (AD/ADRD) research has advanced gene and biomarker technologies to aid identification of individuals at risk for dementia. This innovation is a lynchpin in development of disease-modifying therapies. The emerging science could transform outcomes for patients and families. However, current limitations in the racial representation and inclusion of racial diversity in research limits the relevance of these technologies: AD/ADRD research cohorts used to define biomarker cutoffs are mostly White, despite clinical and epidemiologic research that shows Black populations are among those experiencing the greatest burdens of AD/ADRD. White cohorts alone are insufficient to characterize heterogeneity in disease and in life experiences that can alter AD/ADRD's courses. The National Institute on Aging (NIA) has called for increased racial diversity in AD/ADRD research. While scientists are working to implement NIA's plan to build more diverse research cohorts, they are also seeking out opportunities to consider race in AD/ADRD research. Recently, scientists have posed two ways of including race in AD/ADRD research: ancestry-based verification of race and race-based adjustment of biomarker test results. Both warrant careful examination for how they are impacting AD/ADRD science with respect to specific study objectives and the broader mission of the field. If these research methods are not grounded in pursuit of equity and justice, biases they introduce into AD/ADRD science could perpetuate, or even worsen, disparities in AD/ADRD research and care.

Stites, S. D., & Coe, N. B. (2023). Let's Not Repeat History's Mistakes: Two Cautions to Scientists on the Use of Race in Alzheimer's Disease and Alzheimer's Disease Related Dementias Research. Journal of Alzheimer's disease : JAD, 92(3), 729–740. https://doi.org/10.3233/JAD-220507

Public spending on acute and long-term care for Alzheimer's disease and related dementias

We estimate the spending attributable to Alzheimer's disease and related dementias (ADRD) to the United States government for the first 5 years post-diagnosis. Using data from the Health and Retirement Study matched to Medicare and Medicaid claims, we identify a retrospective cohort of adults with a claims-based ADRD diagnosis along with matched controls. The costs attributable to ADRD are $15,632 for traditional Medicare and $8833 for Medicaid per dementia case over the first 5 years after diagnosis. Seventy percent of Medicare costs occur in the first 2 years; Medicaid costs are concentrated among the longer-lived beneficiaries who are more likely to need long-term care and become Medicaid eligible. Because the distribution of the incremental costs varies over time and between insurance programs, when interventions occur and the effect on the disease course will have implications for how much and which program reaps the benefits.

Coe, N. B., White, L., Oney, M., Basu, A., & Larson, E. B. (2023). Public spending on acute and long-term care for Alzheimer's disease and related dementias. Alzheimer's & dementia : the journal of the Alzheimer's Association, 19(1), 150–157. https://doi.org/10.1002/alz.12657

Paid Care Services and Transitioning Out of the Community among Black and White Older Adults with Dementia

Paid care provided in the home includes important support services for older adults with dementia such as cleaning and personal care assistance. By reducing unmet needs, these services could delay the transition to residential long-term care, but access may differ across racial groups. This study examined the relationship between paid care and transitioning out of the community among Black and White older adults with dementia. Using data from 303 participants (29.4% Black) with probable dementia in the 2011 National Health and Aging Trends Study, competing risk hazards models estimated the association between receiving paid care at baseline and the probability of transitioning out of the community over 8 years (through 2019). Covariate selection was guided by the Andersen model of health care utilization. Paid care was associated with lower risk of transitioning out of the community (subhazard ratios [SHR] = 0.70, 95% CI [0.50, 0.98]). This effect was similar after controlling for predisposing factors and most prominent after controlling for enabling and need for services factors (SHR = 0.65, 95% CI [0.44, 0.95]). There was no racial difference in the use of paid care despite evidence of greater care needs in Blacks. Furthermore, Black participants were less likely to transition out of the community than Whites. Paid care services may help delay transitions out of the community. Future research should seek to explain racial differences in access to and/or preferences for home-based, community-based, and residential care.

Roche-Dean M, Baik S, Moon H, Coe NB, Oh A, Zahodne LB: Paid Care Services and Transitioning Out of the Community among Black and White Older Adults with Dementia. The Journals of Gerontology. Series B. Psychological Sciences and Social Sciences 78(Suppl_1): S91-S100, Mar 2023.

Gender of Study Partners and Research Participants Associated with Differences in Study Partner Ratings of Cognition and Activity Level

Studies of Alzheimer's disease typically include "study partners" (SPs) who report on participants' cognition and function. Prior studies show SP reports differ depending on the relationship between the SP and participant, that is, spouse or adult child. Adult children SPs are typically female. Could differing reports be due to gender? Knowing this may help explain variability in measurement.

Stites, S. D., Gurian, A., Coykendall, C., Largent, E. A., Harkins, K., Karlawish, J., & Coe, N. B. (2023). Gender of Study Partners and Research Participants Associated With Differences in Study Partner Ratings of Cognition and Activity Level. The journals of gerontology. Series B, Psychological sciences and social sciences, 78(8), 1318–1329. https://doi.org/10.1093/geronb/gbad026

Effects of Cognitive Training on Alzheimer's Disease and Related Dementias: The Moderating Role of Social Determinants of Health

Objective: We examined whether social determinants of health (SDoH) are associated with Alzheimer’s disease and related dementias (ADRD) risk and the effects of cognitive training over a 20-year follow-up period. Methods: Data were obtained from 1605 participants in ACTIVE. SDoH measures were created using baseline data at the individual and neighborhood level. Incident ADRD was defined using administrative claims data (1999–2019). Cause-specific hazard models estimated associations between SDoH and claims-based diagnosed ADRD. Results: Higher scores on neighborhood and built environment were associated with lower ADRD risk. Trained participants obtained a greater degree of protection from ADRD when they had higher scores for SDoH domains associated with health care and education access. However, there were fewer significant SDoH moderation effects on cognitive training than expected. Discussion: Future work should continue to explore culturally tailored cognitive training interventions to reduce ADRD risk associated with SDoH that disproportionately affects racially diverse aging populations.

Rebok GW, Gellert A, Coe NB, Clay OJ, Wallace G, Parisi JM, Aiken-Morgan AT, Crowe M, Ball K, Thorpe RJ, Marsiske M, Zahodne LB, Feliz C, Willis SL: Effects of Cognitive Training on Alzheimer's Disease and Related Dementias: The Moderating Role of Social Determinants of Health. Journal of Aging and Health 35(9_suppl): 40S-50S, Oct 2023.

Observational study of patient characteristics associated with a timely diagnosis of dementia and mild cognitive impairment without dementia

Timely diagnosis of cognitive impairment is a key goal of the National Plan to Address Alzheimer's Disease, but studies of factors associated with a timely diagnosis are limited. This study is to identify patient characteristics associated with a timely diagnosis of dementia and mild cognitive impairment (MCI).

White L, Ingraham B, Larson E, Fishman P, Park S, Coe NB: Observational Study of Patient Characteristics Associated with a Timely Diagnosis of Dementia and Mild Cognitive Impairment without Dementia. Journal of General Internal Medicine 37(12): 2957-2965, Sep 2022.