Older African Americans are about twice as likely as older white adults to have Alzheimer’s disease or other types of dementia, according to the Alzheimer’s Association.
Specifically, 18.6% of black adults over the age of 65 have Alzheimer’s dementia as opposed to 10% of older, non-Hispanic white adults, based on data collected by the Chicago Health and Aging Project (CHAP). For other racial groups, 14% of Hispanics over 65 in the U.S. have Alzheimer’s dementia compared to 10% of older non-Hispanic white adults.
But exactly why these disparities exist could be attributed to variations in medical conditions, health-related behaviors and socioeconomic risk factors, Carl Hill, MPH, PhD, chief diversity, equity and inclusion officer for the Alzheimer’s Association, told Seasons.
“Chronic health conditions associated with higher dementia risk, such as cardiovascular disease and diabetes, disproportionately affect black and Hispanic populations,” Hill said. “Social and environmental disparities including lower levels and quality of education, higher rates of poverty, and greater exposure to adversity and discrimination increase risk for these chronic conditions and risk of dementia in older black Americans.”
He added emerging evidence exists that shows other factors like exposure to air pollution, inadequate or poor sleep, excessive alcohol use, depression and hearing impairment may also contribute to an increased risk for Alzheimer’s and dementia in these racial groups.
With that being said, caregivers or family members of African Americans and other communities of color can still take steps to improve care and catch signs of Alzheimer’s or dementia early.
Taking action as a caregiver
According to Hill, because Alzheimer’s and dementia are progressive diseases, the longer individuals, families and caregivers wait to address cognitive concerns, the less ability an individual has to make decisions in their care. He explained people who receive a diagnosis later in Alzheimer’s progression are also less likely to benefit from current treatments that address symptoms of the disease.
In a 2022 special report regarding mild cognitive impairment (MCI) – which can indicate potential early signs of dementia and dementia due to Alzheimer’s – the Alzheimer’s Association found fewer than one in five Americans (18%) are familiar with this condition.
Hill said because MCI is widely unknown across all racial groups and ethnicities in America, it’s crucial for caregivers to not dismiss changes in behaviors or memory, or assume these changes are a part of “normal aging.”
“Disease-related challenges, such as changes in speech, behavior and physical ability, may become more difficult for family caregivers to navigate,” Hill said. “It’s important for families to address cognitive concerns early before a crisis occurs.”
He added when visiting the doctor, caregivers and patients (if possible) should proactively ask about and screen for MCI. While not all MCI may be related to Alzheimer’s, it’s necessary to know as soon as possible if there’s a connection to address the best steps for care and treatment.
Beyond having awareness and communicating with a primary care physician, caregivers should also plan ahead and discuss health care preferences with their loved ones in the event of an Alzheimer’s or dementia diagnosis, Fabu Carter, PhD, senior outreach program manager at the University of Wisconsin-Madison Alzheimer’s Disease Research Center, told Seasons.
“At some point, they [older adults] may lose the ability to express their preferences for care. Have discussions about the future well in advance,” Carter said. “There are a number of good tools families can use to help with these conversations.”
Hill said some topics of discussion should include:
- Emotional planning
- Financial arrangements and care costs
- Additional care services if needed (in-home, full-time residential care)
- Legal preparation
“Legal and financial issues related to Alzheimer’s are complex and it can take time to become more informed in order to make decisions appropriate to your unique situation,” he said. “The sooner plans can begin, the more the person may be able to participate more fully in the broad array of planning in financial, legal, care and treatment.”
Importance of diversity in research participation
Both Hill and Carter highlighted the needs for more inclusivity of participants that come from diverse racial, ethnic and gender backgrounds to strengthen future Alzheimer’s and dementia research and their impacts.
Currently, a new study called AHEAD is seeking to explore how early intervention can prevent memory loss and dementia in older Americans, and study leaders are pushing to include diverse groups of people in their clinical trials.
“At present, the primary means for individuals with dementia to access new and emerging treatments for the disease are through clinical trials,” Carter said. “Our program aims to reduce barriers to participants and to build relationships founded on trust in order to encourage greater diversity in our clinical trials.”
Carter added increasing participant diversity in research can ensure results are generalizable across different groups, including means of treatment, medication and a better understanding of medical and chronic conditions.
“We have to continue to educate the medical community to push for enrollment in clinical trials with their patients while educating the public on the importance of participating,” Hill said. “Understanding cultural, language and literal access barriers to participation in research is needed to advance more diversity of study participants.”