ADRD

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 : JAD92(3), 729–740. https://doi.org/10.3233/JAD-220507

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.

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.

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 services Sep 2022 Notes: Online ahead of print.

Racial and Ethnic Disparities in Dementia Care Next Steps

No abstract available

Coe NB, Lee C: Racial and Ethnic Disparities in Dementia Care: Next Steps (Invited Commentary, Geriatrics) JAMA Network Open 5(6): e2216267, Jun 2022.

Out-of-pocket costs attributable to dementia: A longitudinal analysis

Alzheimer's disease and related dementias (ADRD) affect 5.7 million Americans, and are expensive despite the lack of a cure or even treatments effective in managing the disease. The literature thus far has tended to focus on the costs to Medicare, even though one of the main characteristics of ADRD (the loss of independence and ability to care for oneself) incurs costs not covered by Medicare. In this paper, we use survey data for 2002-2016 from the Health and Retirement Study to estimate the out-of-pocket costs of ADRD for the patient and their family through the first 8 years after the onset of symptoms, as defined by a standardized 27-point scale of cognitive ability. A two-part model developed by Basu and Manning (2010) allows us to separate the costs attributable to ADRD into two components, one driven by differences in longevity and one driven by differences in utilization.

Oney M, White L, Coe NB: Out-of-pocket costs attributable to dementia: A longitudinal analysis. Journal of the American Geriatrics Society (JAGS) 70(5): 1538-1545, May 2022.

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.

Coe NB, White L, Oney M, Basu A, Larson EB: 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 Mar 2022 Notes: Online ahead of print.

Chronic Care, Dementia Care Management, and Financial Considerations

The needs of persons living with Alzheimer's disease and Alzheimer's disease-related dementia (AD/ADRD) are challenged by tremendous complexity impacting both care delivery and financing. Most persons living with dementia (PLWD) also suffer from other chronic medical or mental health conditions, which further burden quality of life and function. In addition to difficult treatment choices, optimal dementia care models likely involve people and services that are not typical pieces of the health care delivery system but are all critical partners-care partners, social workers, and community services, to name a few. More than 200 models of dementia care have demonstrated some efficacy. However, these successful interventions that might address much of the care needed by PLWD are uninsured in the United States, where insurance coverage has focused on acute care needs. This poses great difficulties for both care provision and care financing. In this article, we review these 3 key challenges: dementia care for those with chronic comorbid disease; care models that require people who are not typical providers in traditional care delivery systems; and the mandate to provide high-quality care that is currently not funded by usual health care insurance. We propose promising next steps that could substantially improve the lives of PLWD and the lives of their care partners, and highlight some of the many research questions that remain.

Coe NB, Boyd CM, Chodosh J: Chronic Care, Dementia Care Management, and Financial Considerations. Journal of the American Medical Directors Association 22(7): 1371-1376, Jul 2021.

Difficulty with Taking Medications Is Associated with Future Diagnosis of Alzheimer's Disease and Related Dementias

Medication management requires complex cognitive functioning, and therefore, difficulty taking medications might be an early sign of cognitive impairment and could be a risk factor for Alzheimer's disease and related dementias (ADRD). Accordingly, people with difficulty taking medications may benefit from more detailed cognitive screening, potentially aiding in the diagnosis of ADRD, which is underdiagnosed. We are unaware of evidence on medication management difficulties that precede a real-world ADRD diagnosis in the USA.

Barthold D, Marcum ZA, Chen S, White L, Aliabouni N, Basu A, Coe NB, Gray SL: Difficulty with Taking Medications Is Associated with Future Diagnosis of Alzheimer's Disease and Related Dementias. Journal of General Internal Medicine 36(4): 863-868, Apr 2021.

Health Care Costs of Alzheimer’s and Related Dementias within a Medicare Managed Care Provider

In this study, the authors estimated the direct health care costs attributable to ADRD among older adults within a large MA plan. A retrospective cohort design was used to estimate direct total, outpatient, inpatient, ambulatory pharmacy, and nursing home costs for 3 years before and after an incident ADRD diagnosis for 927 individuals diagnosed with ADRD relative to a sex-matched and birth year-matched set of 2945 controls. The authors found that greater total health care costs among individuals with ADRD are primarily driven by nursing home costs.

Fishman P; White L; Ingraham B; Larson EB; Crane PK; Coe NB: Health Care Costs of Alzheimer’s and Related Dementias within a Medicare Managed Care Provider. Medical Care. Sep 2020. 58(9) 833-841

 

Dementia Is Associated With Earlier Mortality for Men and Women in the United States

Sociodemographic trends in the United States may influence future dementia-associated mortality, yet there is little evidence about their potential impact. The study objective was to estimate the effect of dementia on survival in adults stratified by sex, education, and marital status. Methods: Using survey data from the Health and Retirement Study (HRS) linked to Medicare claims from 1991 to 2012, the authors identified a retrospective cohort of adults with at least one International Classification of Diseases—ninth revision—Clinical Modification (ICD-9-CM) dementia diagnosis code (n = 3,714). For each case, the authors randomly selected up to five comparators, matching on sex, birth year, education, and HRS entry year (n = 9,531), and assigned comparators the diagnosis date of their matched case. The authors estimated a survival function for the entire study population and then within successive strata defined by sex, education, and marital status. Both sex and level of education moderate the relationship between dementia diagnosis and length of survival.

White L, Fishman P, Basu A, Crane PK, Larson EB, Coe NB. Dementia Is Associated With Earlier Mortality for Men and Women in the United States. Gerontology and Geriatric Medicine, 2020 Aug.