Overcoming Inequities in Dementia Care

Older Black and Hispanic Americans are more likely than older white people to have Alzheimer’s disease or other types of dementia, according to a recent report by the Alzheimer’s Association.

Understanding why this inequity exists and exploring ways to overcome it was the topic of a recent discussion by Carl V. Hill, the chief diversity, equity, and inclusion officer for the Alzheimer’s Association. The program was presented by Insight Memory Care in collaboration with AARP Virginia.

There are differences between diversity, equity, and inclusion, Hill said. Diversity is a numerical representation of different types of people, considering differences across many characteristics and beliefs. Equity is where everyone gets what they need to survive, with equal access to opportunity, resources, and support. Inclusion is the state of including or being included within a group, or a true sense of belonging.

It is important to note that “equality is not equity,” said Hill. Equality means everyone has the same access to resources, while equity is everyone getting what they need.

While there have been significant funding increases in the field of dementia research over the past 20 years, research regarding minority patients has been lacking. In 1995, Hill was a member of the first master of health professional graduates at Morehouse College, the first such program at a historically Black college and university (HBCU). Although the number of Black health professionals is growing, for many years there were few in the field.

Dementia research has also focused mainly on white patients. There are recent breakthroughs with promising drugs to help treat Alzheimer’s, but less that 5 percent of clinical trial participants have been of minority background. Minority patients who do participate have higher drop-out rates.

The 2021 Alzheimer’s Association report on race and ethnicity was the first major research to include participation from Asian, African, Hispanic, and Native American, as well as white people. Two separate surveys of adults with Alzheimer’s and caregivers examined attitudes and experiences in regard to knowledge and understanding of the disease; access to care and support services; trust in health care, providers, and disease research; interest in clinical trials; and existence of discrimination and how it impacts care.

While genetics is a small factor, with Hispanics 1.5 percent more likely to develop dementia than non-Hispanic white people, the report found socioeconomic issues were more likely to cause disparities in dementia.

The higher an individual’s socioeconomic status, the more likely they are diagnosed with dementia, said Hill, because they are more likely to have access to doctors and resources.

Alzheimer’s is the most prevalent form of dementia, followed by vascular, Lewy Body, and frontaltemporal. Because of lifestyle conditions, vascular dementia trends higher in African Americans. Lifestyle factors include diabetes, hypertension, high cholesterol, obesity, and smoking.

Hill cited educator W. E. B. DuBois, who attributed the experience of being African or Hispanic American as a “stress of life.” This stress, said Hill, is important to understanding difference in life outcomes.

Other key findings of the 2021 report include:

• Only 53 percent of African Americans trust that a future cure for Alzheimer’s will be shared equally regardless of race, color, or ethnicity, compared to 75 percent of white people. Other minority groups also had lower trust than white people.
• Nearly two thirds of African Americans believe medical research is biased against people of color, a view shared by substantial numbers of Asian, Native, and Hispanic Americans.
• Half of African Americans report experiencing health care discrimination, while at least one third of Asian, Native, and Hispanic Americans also reported discrimination.
  

The Equity in Neuroscience and Alzheimer’s Clinical Trials (ENACT) Act was introduced in Congress in 2021. While the legislation itself did not move forward, key funding for its provisions was included in the 2023 federal budget.

These initiatives include expanding access and increasing outreach to underrepresented populations, increasing diversity among clinical trial staff so they are more representative of the population, and reducing the participation burden by providing incentives for locating Alzheimer’s clinical trial sites in areas with high concentrations of underrepresented populations.

The Alzheimer’s Association is also focused on community-based participatory research, a partnership that involves community members, organizational representatives, researchers, and others in all aspects of the process.

Because each community is different, Hill said community partners can help identify the underlying culture and social structure to help understand how to address the community’s needs and deliver important resources, all of which helps build trust.

Key partners include HBCUs and the African Methodist Episcopal (AME) Church, both of which have large networks. The AME Church, for example, holds an annual Purple Sunday event with the Alzheimer’s Association to help educate members about Alzheimer’s and other forms of dementia.

Hill also cited a partnership with playwright Garrett Davis, whose play “Unforgettable” explores dementia featuring a mostly African American cast. The play is touring as another means to help educate and inform about Alzheimer’s and dementia.

With health equity, said Hill, “all can attain (their) full potential.” If a treatment for Alzheimer’s is developed by 2025, whether through lifestyle intervention or medications that delay onset by just five years, it is projected that 5.7 million people expected to develop Alzheimer’s by 2050 would not.

“This would have a huge impact for our families and our society,” said Hill. But it cannot be possible without equitable participation. Hill is heartened that HBCUs today host over 20 master of public health programs.

“We need to continue to think outside the box,” said Hill.

For more information about Alzheimer’s and dementia, visit alz.org.