Understanding Disparities in Alzheimer’s Disease and Dementia

November is Alzheimer's Awareness Month. It is a good time also to raise awareness of the many Americans who face barriers to timely diagnosis and treatment. More than 6.7 million Americans are living with Alzheimer’s dementia in 2023, a disease that costs the United States about $345 billion per year. People with dementia have increased vulnerability to other complications, particularly infections and death.https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf

Disparities in dementia and Alzheimer's care

Research shows Alzheimer’s and other dementias disproportionately affect populations of color. Black people have the highest risk for dementia, and are twice as likely to develop Alzheimer’s disease than whites in the United States. Hispanics will face the steepest increase in dementia cases in the country, up seven times over today’s estimates. And across groups, women are nearly two times more likely to be affected by Alzheimer's than men.https://doi.org/10.1016/j.jalz.2018.06.3063

Let's look at the challenges facing these communities.

Low diagnosis rates. Although the rate of Alzheimer’s and other dementias is higher among African Americans and Hispanics compared to Whites, they’re less likely to be diagnosed.https://www.nia.nih.gov/news/data-shows-racial-disparities-alzheimers-disease-diagnosis-between-black-and-white-research Researchers suspect this discrepancy is linked to limited access to health care, cultural differences in recognizing and reporting symptoms, and health care provider bias.

Disease burden. Black participants in Alzheimer’s research studies showed higher rates of cognitive impairment, particularly on measures of processing speed, executive function, and language, compared with White participants. Black participants also had higher rates of hypertension and diabetes – potential risk factors for developing Alzheimer’s and related dementias.https://www.nia.nih.gov/news/data-shows-racial-disparities-alzheimers-disease-diagnosis-between-black-and-white-research

Cultural factors. Cultural beliefs, perceptions, and knowledge about aging and health care can contribute to disparities in Alzheimer’s. Research shows some racial and ethnic groups view memory loss or language difficulty as normal parts of aging, which could delay diagnosis and treatment and may lead to worse outcomes.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8263486/

Socioeconomic factors. Differences in income, housing and food security, educational opportunity, and access to resources can contribute to brain health disparities. Lower socioeconomic status is associated with a higher risk of developing dementia and may limit access to health care and support services.https://aspe.hhs.gov/reports/racial-ethnic-disparities-alzheimers-disease-literature-review-0

Underrepresentation in research and clinical trials. Under-representation of Black, Hispanic, Asian, and Native Americans in clinical trials remains a problem. This stems from a deep-seated distrust of the medical system as well as inadequate recruitment and retention.https://www.sciencedirect.com/science/article/pii/S2352873719300794

Treatment disparities. Post-diagnosis, Black and Latino people living with dementia are less likely to be prescribed and more likely to discontinue anti-dementia medications.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3781927/ Some racial and ethnic groups receive more aggressive, higher-intensity, costly care at the end of life.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6215747/ Factors that may explain this disparity include patient preference for more aggressive care, medical mistrust, lack of in-home resources, misconception of treatment options, and fewer conversations around advanced care planning.https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2793180

Costs. The lifetime cost of care for a patient with dementia totals about $412,936, with 70 percent associated with unpaid caregiving and out-of-pocket expenses. In 2021, family members and friends provided more than $271 billion in unpaid care to people living with dementia.https://www.ajmc.com/view/the-economic-and-societal-burden-of-alzheimer-disease-managed-care-considerations

Black and Hispanic patients living with dementia are more likely to rely on family caregivers and less likely to use nursing homes than their White counterparts.https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2793180#:~:text=After%20diagnosis%2C%20racial%20and%20ethnic,homes%20than%20their%20White%20counterparts Meanwhile, nursing facilities where Black and Latino residents receive care are under-resourced and have higher rehospitalization rates.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6167186/

Opportunities for closing gaps to improve population health

Targeted strategies should address systemic barriers and identify groups experiencing a disproportionate burden of disease.https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf Example strategies may include:

• Educational materials and assessment tools tailored to diverse communities – to help people better understand memory and thinking issues and create more opportunities for patient-physician conversations
• Alzheimer's and dementia care that’s informed by and responsive to cultural beliefs
• Recruiting non-White research cohorts – to increase access to brain health research in underrepresented communities and identify risk factors in these groupshttps://www.sciencedirect.com/science/article/pii/S2352873719300794
• Increasing awareness of end-of-life options – through more training in cultural sensitivity for health care professionals, inclusive programs and resources for patients, and community outreach.

Focusing on drivers of disparities in Alzheimer’s and dementia can help us reduce the health care burden on people, caregivers, and the health system.