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Time to bridge racial & ethnic barriers to dementia care

Time to bridge racial & ethnic barriers to dementia care
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March 2, 2021
Email: alzsc@alz.org
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A guest column by Lucien Richardson, former caregiver and longtime member of the Alzheimer’s Association South Carolina Chapter Board of Directors.


Today, 6.2 million Americans of every race, color and creed are facing the challenges posed by Alzheimer’s disease, along with the family members who help provide their care. But according to the Alzheimer’s Association 2021 Alzheimer’s Disease Facts and Figures report, released this week, communities of color face additional barriers to Alzheimer’s and dementia care.

While older Blacks and Hispanics are also disproportionately more likely to have Alzheimer’s and other dementias, both groups are more likely to have missed diagnoses than older whites. The report also found that among non-White caregivers, half or more say they have faced discrimination when navigating health care for their care recipient, with the top concern being that providers do not listen to what they are saying because of their race, color or ethnicity. 

This comes as no surprise to me. When my wife and I sought medical advice to address her forgetfulness and changing cognition, we were not given straight answers. Actually, we weren't provided any answers. Our neurologist handed me a prescription and walked out of the room without providing any information about the medication. I followed the neurologist and pointedly asked him if he believed she had Alzheimer's disease. I knew that Aricept was one of the drugs prescribed for Alzheimer's, because I had previously cared for an uncle with Alzheimer’s who was on this medication.

Was this experience due to racial bias? Our doctor may have been at a loss as to how to tell a 49-year-old mother of two that she had Younger-Onset Alzheimer’s. He may have been in a rush to see other patients. Whatever the cause or motivation for what we experienced, that moment lit a fire under me to advocate for everyone facing Alzheimer’s or another dementia, regardless of their age, race or circumstance.

Every patient has the right to know the battle that they are facing. Every patient should be able to trust healthcare professionals to show them that basic degree of respect.

Sadly, I am not the only person of color to feel this way. The Alzheimer’s Association Facts and Figures report found that half of Black Americans (50%) report they have experienced health care discrimination; more than 2 in 5 Native Americans (42%) and one-third of Asian Americans (34%) and Hispanic Americans (33%) likewise report having experienced discrimination when seeking health care.

In addition, nearly two-thirds of Black Americans (62%) believe medical research is biased against people of color, and only half of Black Americans (53%) trust a future cure for Alzheimer’s will be shared equally with people regardless of race, color or ethnicity.

Clearly, actions and solutions are needed to ensure that the already devastating burden of Alzheimer’s disease and other dementias on disproportionately affected racial and ethnic groups is not made worse by discrimination and health inequities—whether in the current health care system or in the development of future treatments. Without appropriate diversity in Alzheimer’s clinical trials and research, it is impossible to get a complete understanding of how racial and ethnic differences may affect the efficacy and safety of potential new treatments.

To address this challenge, the Alzheimer’s Association and NIH are co-funding the Institute on Methods and Protocols for Advancement of Clinical Trials in Alzheimer’s disease and related dementias (IMPACT-AD) program—an innovative program to increase diversity among dementia research professionals. The Association is also partnering with the American College of Radiology on the New IDEAS study. This important study will enroll 7,000 participants to determine if using a brain amyloid PET scan can help inform an individual’s memory care plan and improve their health outcomes, including 2,000 Hispanic Americans and 2,000 African Americans.

Locally, the Alzheimer’s Association South Carolina Chapter is committed to bridging current gaps to ensure all South Carolina residents have access to Alzheimer’s care and support services. As a longtime member of the SC Chapter board of directors, I am personally committed to continuing this work in memory of my wife, Frances.

There is still much work to do. While nothing can smooth the path that my wife and I traveled during her illness, I am confident that we can do better for those living with dementia today—and for all who will be impacted in the future.
 
Lucien Richardson serves on the board of the Alzheimer’s Association South Carolina Chapter. To view the Alzheimer’s Association 2021 Alzheimer’s Disease Facts and Figures report and to get involved in the cause, visit alz.org/facts. To access local resources and support, visit alz.org/sc or call 800.272.3900 (24/7).

 

Alzheimer's Association

The Alzheimer's Association leads the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia.™ For more information, visit www.alz.org or call the 24/7 Helpline at 800.272.3900.

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