The Alzheimer’s Association report, titled “2021 Alzheimer’s Disease Facts and Figures,” provided an annual look at the latest national statistics and information on the prevalence, incidence, mortality and morbidity, costs of care, and caregiving, both nationally and state-by-state.1 For the first time, an accompanying special report, “Race, Ethnicity and Alzheimer’s in America,” examined perspectives and experiences of Asian, Black, Hispanic, Native, and White patients in the scope of Alzheimer and dementia care within the United States.2 It is one of the few reports to investigate the experiences of diverse caregivers.
Findings from the special report revealed that discrimination is a barrier to Alzheimer and dementia care. Over 36% of Black patients and 18% of Asian patients believe discrimination would be a barrier to receiving Alzheimer care. In addition, at least half of non-White caregivers say they have experienced discrimination when navigating health care settings for their care recipient.
We spoke to Carl V Hill, PhD, MPH, chief diversity, equity, and inclusion officer of the Alzheimer’s Association about the results of the Alzheimer’s Association special report.
What do you think is the most surprising or alarming piece of data found in the facts and figures of the special report, “Race, Ethnicity and Alzheimer’s in America?”
Dr Hill: We’ve been aware of the impacts of systemic racism and its effect on health care. But this survey really pinpoints to deeper issues around discrimination in our health system. And we’ve got to do more to ensure that care is culturally competent. This survey also indicates that we must do more to build trust in health care settings, and medical research, clinical trials, and with our engagement with communities
What efforts are underway to build more culturally competent care?
Dr Hill: There are quite a few efforts underway, and they’re really under the realm of developing partnerships with national and community-based organizations that advocate for the wellbeing of these underrepresented racial and ethnic populations.
Within the Alzheimer’s Association, we have an exciting partnership with the African Methodist Episcopal Church, and they have churches in every state all over the country. And it gives us just a really strong partner in delivering our information about Alzheimer’s and other dementia, or our resources as they relate to care and support. So, we’re really focused in on developing partnerships for building trust with diverse communities.
How is the Alzheimer’s Association working with individual clinicians to bring about more culturally competent care?
Dr Hill: In terms of individual clinicians, the Alzheimer’s Association is conducting the New IDEAS (Imaging Dementia – Evidence for Amyloid Scanning) study, where we are assessing the clinical utility of positron emission tomography imaging by taking pictures of the brain and to see the utility of that imaging among African-American and Hispanic-Latino populations. So, we will be working with dementia specialists and other clinicians to help us with that imaging, and our strategy for recruitment in that study will take a community-based participatory approach.
In the report, it says that concerns about developing Alzheimer’s were lower among patients who are Native American, Black, and Hispanic, especially when compared to White patients. What do you think could be done about this disparity?
Dr Hill: We have to understand perceptions of Alzheimer’s and better understand stigma and underrepresented diverse communities. So again, I go back to this idea of cultural competence in health care settings and research settings, particularly in the way that we engage to provide information. To be competent means that we’re assessing the way that people perceive their risk and their opportunity for care that is culturally competent. And then we also have to think about diversity throughout the entire health care system, so finding ways to include and recruit clinicians who represent these communities and who would communicate and be able to deliver culturally competent care, which is also very important.
The special report reveals that caregivers who are Black give more hours of care per week and are less likely to use respite services compared with White caregivers. Why do you think that is?
Dr Hill: This is a very important question and I think it’s one that needs to be addressed through research in this area. One could speculate that resources here are a very important issue. So, caregivers are under increased stress and they have additional demands, which could very well impact their quality of care or their knowledge of other resources to assist in their care. But again, I think this all relates to a need for us to better understand these factors within these diverse, underrepresented, and many times, disproportionately affected communities for Alzheimer’s and other dementia.
The report also contains information on lower participation in clinical trials by minority patients in the United States. Can you tell us about programs to increase participation from underrepresented groups and the effect this might have?
Dr Hill: I would point back to the New IDEAS study. That’s going to be a really good opportunity for us to test a model for engaging communities and recruiting African-Americans and Latinos into a study. So we’re building that model using community-based, participatory research methods. I think that with these partnerships, we’ll be able to recruit people into clinical trials by not simply asking someone to participate, but developing partnerships with trusted organizations. This will help us deliver information about Alzheimer’s and other dementia, enhance our ability to be trustworthy, and then make these communities aware of the number of trials that are available for them to participate in.
The Alzheimer’s Association has a great resource, “TrialMatch,” and it’s an opportunity for all people to go and see what clinical trials might be available to them.
Then by having more individuals in the studies, we would understand the course of this devastating disease in all people. Today, there are 6.2 million older adults who are 65 years and older living with Alzheimer’s. And by 2050, that number is expected to jump to nearly 13 million people. So by having more participation, we can understand the safety and the effectiveness of these treatments that are being tested, and that they could ultimately be helpful for all people for this devastating disease.
1. 2021 Alzheimer’s Disease Facts and Figures. Alzheimer’s Organization. https://www.alz.org/media/documents/alzheimers-facts-and-figures.pdf. Published online March 2, 2021. Accessed March 2, 2021.
2. 2021 Alzheimer’s Disease Facts and Figures Special Report: Race, Ethnicity and Alzheimer’s in America. Alzheimer’s Organization. https://www.alz.org/media/Documents/alzheimers-facts-and-figures-special-report.pdf. Published online March 2, 2021. Accessed March 2, 2021.