New report sheds light on diversity and inclusion in dementia care

The Alzheimer’s Association has released its 2023 Diversity, Equity and Inclusion (DEI) Report. It is the first public report documenting the Association’s ongoing work aimed at achieving health equity in dementia care, ensuring all communities have a fair and just opportunity for early diagnosis and access to risk reduction and quality care.

The new report highlights important progress the Alzheimer’s Association is making in advancing DEI initiatives across all strategic areas of the Association.

“At the Alzheimer’s Association, our commitment to diversity, equity and inclusion is more than acknowledging the need for greater representation among our staff, volunteers and constituents,” said Joanne Pike, DrPH, president and chief executive officer, Alzheimer’s Association. “It’s a focus on intentional inclusion across all areas of our mission — to reach equity in advocacy and dementia science, and to deliver care and support that is culturally relevant and effective.”

Currently, the Association is working with over 30 national and more than 600 local organizations to educate, support and engage underserved communities. Through these community partnerships, the Association has grown its reach to underserved populations during the past year, according to the report.

“Our ability to provide quality care and support to underserved populations facing Alzheimer’s and all other dementia is critical to changing health outcomes for these Americans. We are only reaching a fraction of people affected by this disease, and this must change,” said Carl V. Hill, Ph.D., MPH, chief diversity, equity and inclusion officer, Alzheimer’s Association. “To expand our efforts, we are dedicated to bringing culturally relevant resources and information to people in their communities. Our starting point is intentional inclusion in community outreach.”

Highlights from the new report include:

Accelerating Research

· The Association has 153 active research projects totaling over $24 million to promote diversity in the scientific community, and more than 200 active research projects totaling over $20 million to increase the understanding of and address health disparities.

· The report also notes efforts the Association is making to increase participation and representation of diverse populations in research.

o The U.S. Study to Protect Brain Health Through Lifestyle Intervention to Reduce Risk (U.S. POINTER) — the largest U.S clinical trial to evaluate whether lifestyle interventions that simultaneously target multiple risk factors can protect cognitive function in older adults (age 60-79) at increased risk for cognitive decline — has enrolled 2,100 participants with more than 30% from populations historically underrepresented in clinical trial research.

o The Association-led New IDEAS study, which aims to understand the utility of an accurate diagnosis in Alzheimer’s disease in underrepresented populations will enroll up to 7,000 participants, with over 50% identifying as Black/African American or Latino/Hispanic. The New IDEAS Biorepository will store saliva and blood samples from participants, allowing researchers to test and validate new genetic and blood biomarkers for dementia that are applicable and accurate for a diverse, real-world population.

Advancing Public Policy

· To help increase representation in research, the Association worked with bipartisan congressional champions to draft and introduce the Equity in Neuroscience and Alzheimer’s Clinical Trials (ENACT) Act, key provisions of which were signed into law in December 2022. The ENACT Act will increase underrepresented individuals’ participation in Alzheimer’s clinical trials by expanding education and outreach to underrepresented communities, reducing the burden of participation and encouraging representation among clinical trial staff.

Providing and Enhancing Care and Support

· Over the past three years, the Association has grown its efforts to engage Asian, Black, Native Hawaiian and Hispanic volunteers, the latter of which now represent 7% of its active volunteer base. These volunteers are providing vital connections with communities, including civic, business and faith-based groups, as well as historically underserved and underrepresented populations.

· During the past year, the Association’s 24/7 Helpline (800.272.3900) staff has received additional training to help bridge language gaps for Spanish-speaking callers when discussing Alzheimer’s disease, caregiving and other topics. Currently, the Helpline offers help to family caregivers in more than 200 languages.

· The Alzheimer’s Association, which has served as Public Health Center of Excellence on Dementia Risk Reduction since 2020, is reviewing how social determinants of health (SDOH), such as economic disadvantage, air pollution and racism, can impact Alzheimer’s and dementia. Through a series of workshops and roundtables, the center has convened experts to review evidence of SDOH as risk factors for dementia and potential public health solutions to address these disparities.

Increasing Concern and Awareness

· Among its growing roster of partners, the Association forged an alliance with the Human Rights Campaign (HRC), which has been working to end discrimination against LGBTQ+ people for more than four decades. With over 3 million HRC members nationwide, this collaboration will seek to maximize support for LGBTQ+ people and their communities affected by Alzheimer’s or another dementia by providing tailored outreach, information and resources.

· Since 2022, the Alzheimer’s Association has partnered with Gdavis Productions to present Unforgettable — a dynamic and emotional stage play that showcases the effects of caring for a loved one living with Alzheimer’s. The play, featuring Black and Latino cast members, sheds light on the importance of early detection, recognizing the early warning signs of Alzheimer’s and the importance of underrepresented communities participating in clinical trials. Since its launch, Unforgettable has played sold-out shows in Atlanta, Bowie (Maryland), Charlotte, Chicago, Dallas, Houston, and Los Angeles, reaching more than 100,000 new constituents.

· The Alzheimer’s Association is partnering with more than 300 Celebrity Champions — public figures using their voices in the fight against Alzheimer’s. These Celebrity Champions, including respected voices in the Black, Hispanic, Asian and LGBTQ+ communities, as well as accessibility advocates, are enabling the Association to reach new and diverse audiences with disease-related information while inspiring action.

“While the Alzheimer’s Association is proud of our ongoing work to reach all communities, we have so much more to do,” Hill said. “Alzheimer’s and other dementia does not discriminate and affects all racial and ethnic groups. We will continue to expand this important work, engaging a variety of voices and considering different perspectives, as we work toward our ultimate goal of achieving health equity for communities underserved and disproportionately affected by Alzheimer’s and other dementia.”

The 2023 Diversity, Equity and Inclusion Report can be viewed at: alz.org/deireport.

About the Alzheimer’s Association

The Alzheimer’s Association is a worldwide voluntary health organization dedicated to Alzheimer’s care, support and research. Our mission is to lead 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®. Visit alz.org or call 800.272.3900.