Scientists Identify Steps Needed to Address Disparities in Dementia Research and Care
- Little is known about the effect of ethnicity and race on Alzheimer's disease and related dementias (ADRDs)
- A new white paper from the Alzheimer Association's International Society to Advance Alzheimer's Research and Treatment (ISTAART) provides a comprehensive summary of the gaps in scientific literature
- ISTAART also recommends steps that should be taken to advance ADRD science across countries and populations
Alzheimer's disease and related dementias (ADRDs) affect nearly 47 million people globally. That number is projected to increase by 10 million new cases every year. ADRDs are expected to become the single greatest challenge facing health care systems around the world.
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Despite the diversity of the world's population, little is known about the effect of ethnoracial factors on ADRDs. Yakeel T. Quiroz, PhD, director of the Massachusetts General Hospital Multicultural Alzheimer's Prevention Program, was co-first author of a white paper on the current science and recommendations on the subject, as part of the Alzheimer Association's International Society to Advance Alzheimer's Research and Treatment (ISTAART). That paper is published in Alzheimer's & Dementia,
The Impact of Ethnoracial Factors on ADRDs
Ethnicity and race affect risk factors for Alzheimer's disease, both biological (e.g. genetics, blood proteomics) and medical (e.g. hypertension, diabetes, obesity, depression). Differences in these risk factors might account for known ethnoracial differences in the incidence, timing of diagnosis, clinical presentation and course of Alzheimer's disease.
Ethnicity and race also affect insurance coverage, access to health care and even whether individuals perceive cognitive changes to be abnormal. One's culture can also dictate who makes decisions about an older relative's health care.
Often, scientists are not trained to partner with underrepresented communities, including physicians from those communities, and therefore struggle to recruiting and retaining patients in clinical trials. In addition, they may give little thought to the budget needed to translate documents, make them culturally specific or adapt them to low literacy levels.
"State of the Science" Report
Based on a systematic review, ISTAART provides a concise report on the gaps in the scientific literature about how ethnoracial factors might affect:
- Immunity and neurodegeneration
- Reserve, resilience and protective factors
- Disease detection and biomarkers
- Access and response to interventions
- Subjective cognitive decline
- Neuropsychiatric symptoms
- Atypical Alzheimer's disease and associated syndromes
- Perioperative cognition and delirium
- Poor diet and malnutrition as contributors to cognitive impairment
For example, among patients with Alzheimer's disease, the incidence and type of neuropsychiatric symptoms appear to vary by ethnicity and race. Cultural emphasis on family, respect for elders and perceptions of Alzheimer's disease symptoms as a natural part of aging may cause members of certain ethnoracial groups to postpone or forego seeking external assistance, such as prescription of antipsychotics.
Advancing ADRD Science
The ISTAART authors provide recommendations about the most immediate steps that need to be taken to advance ADRD science across ethnoracial populations. Some are self-evident, such as training clinicians and researchers to implement culturally appropriate research methodologies.
Some of the less overt needs are to:
- Identify views held by various ethnoracial groups about ADRD research and interventions
- Examine whether certain life experiences/statuses (e.g. poverty, exposure to war/conflict, stigma, disability, sex, gender) affect ADRD disparities among different ethnoracial groups across countries
- Disseminate ADRD educational materials that are specifically focused on caregivers from various ethnoracial groups, and include caregivers from all groups in studies that address caregiver and family needs
A Working Model
ISTAART suggests key foci for developing the field of health disparities in ADRDs. ADRD researchers must directly test the importance of ethnoracial factors and evaluate them within the big picture. That will include investigating them in the context of neuropathology, molecular biology, environmental factors and more.
These large-scale, complex questions will require special tools, such as those refined in the Human Genome Project. Examples are multiscale modeling, advanced artificial intelligence learning tools and structural equation modeling. That approach could lead to a precision medicine approach to treating and preventing ADRDs.
To maintain their momentum, the authors propose scheduling a "think tank" meeting in conjunction with an established gathering, such as the National Alzheimer's Project Act meeting. Rather than presenting recent findings, experts from a number of fields would be invited to discuss strategies for advancing the understanding of health disparities in ADRDs.
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