New Alzheimer’s Association Report Examines Racial and Ethnic Attitudes on Alzheimer’s and Dementia Care
Findings from two national surveys appearing in the Alzheimer’s Association 2021 Alzheimer’s Disease Facts and Figures report reveal that discrimination is a barrier to Alzheimer’s and dementia care. More than one-third of Black Americans (36%) and nearly one-fifth of Hispanic Americans (18%) and Asian Americans (19%), believes discrimination would be a barrier to receiving Alzheimer’s care. In addition, half or more of non-White caregivers say they have experienced discrimination when navigating health care settings for their care recipient.
The 2021 Facts and Figures report provides an in-depth look at the latest national statistics on Alzheimer’s prevalence, incidence, mortality, costs of care and impact on caregivers. New disease-related statistics for North Carolina revealed the following:
- Number of North Carolina residents aged 65 and older living with Alzheimer’s: 180,000
- Estimated number of North Carolina residents living with Alzheimer’s in 2025: 210,000
- Percentage change: 16.7 % increase
- Statewide deaths from Alzheimer’s disease (2019): 4,508
- Number of North Carolina residents serving as unpaid family caregivers: 358,000
- Total hours of unpaid care provided: 517 million
- Total value of unpaid care: $7.3 billion
“The new Facts and Figures report shows that Alzheimer’s disease and other dementias continue to be a significant burden for too many North Carolina families,” said Katherine L. Lambert, Alzheimer’s Association Regional Leader for the NC, SC, and GA Chapters. “We must continue to work toward advancing new treatments that can stop or slow the progression of Alzheimer’s, while also continuing to provide care and support services to help all those affected.”
For the first time, the accompanying special report, “Race, Ethnicity and Alzheimer’s in America,” examines perspectives and experiences of Asian, Black, Hispanic, Native and White Americans in regard to Alzheimer’s and dementia care.
Findings in the report, reveal that non-White racial/ethnic populations expect and experience more barriers when accessing dementia care, have less trust in medical research and are less confident that they have access to health professionals who understand their ethnic and racial background and experiences. Among the findings:
- Two-thirds of Black Americans (66%) believe it is harder for them to get excellent care for Alzheimer’s disease or other dementias. Likewise, 2 in 5 Native Americans (40%) and Hispanic Americans (39%) believe their own race or ethnicity makes it harder to get care, as do one-third of Asian Americans (34%).
- Nearly two-thirds of Black Americans (62%) believe that medical research is biased against people of color — a view shared by substantial numbers of Asian Americans (45%), Native Americans (40%) and Hispanic Americans (36%) as well. Only half of Black Americans (53%) trust a future cure for Alzheimer’s will be shared equally regardless of race, color or ethnicity.
- Fewer than half of Black (48%) and Native Americans (47%) feel confident they have access to providers who understand their ethnic or racial background and experiences, and only about 3 in 5 Asian Americans (63%) and Hispanics (59%) likewise feel confident.
“Despite ongoing efforts to address health and health care disparities in Alzheimer’s and dementia care, survey results show there is still a lot of work to be done,” said Carl V. Hill, Ph.D., MPH. chief diversity, equity and inclusion officer, Alzheimer’s Association. “Clearly, discrimination, lack of diversity among health care professionals and mistrust in medical research create significant barriers to care and demand the country’s full attention.”
Impact of COVID-19
The report also examines the devastating impact the COVID-19 pandemic is having on people living with Alzheimer’s. According to the report, there were at least 42,000 more deaths from Alzheimer’s and other dementias in 2020 compared with averages over the previous five years – a 16% increase.
In North Carolina there were 1,082 more deaths from Alzheimer’s and dementia in 2020 than compare to averages over the past five years – an 11.3% increase.
The report highlights preliminary and anecdotal data indicating the COVID-19 pandemic is also having adverse effects on many family caregivers. It notes that pandemic-related caregiving challenges, including the shutdown of adult day care centers and the inability of families to visit or communicate with relatives in long-term care settings have caused “emotional distress and other negative outcomes among caregivers.”
“While more study is needed to understand the exact reasons why deaths attributable to Alzheimer’s and dementia during the pandemic have increased so dramatically, we do know individuals living with Alzheimer’s, particularly those living in long-term care settings are extremely vulnerable,” said Lisa Roberts, Executive Director of the Alzheimer’s Association, Eastern North Carolina Chapter. “In addition, many caregivers have been unable to visit loved ones in these settings, resulting in social isolation for the care recipient and causing enormous stress for these families. The Alzheimer’s Association is committed to supporting North Carolina caregivers and implementing the safety measures needed to reunite these families.”