Recently, the Alzheimer’s Association released its 2021 Alzheimer’s Disease Facts and Figures report which provides an in-depth look at the latest national statistics on Alzheimer’s prevalence, incidence, mortality, cost of care and impact on caregivers. New disease-related statistics for Missouri revealed the following:
– Number of Missouri residents aged 65 and older living with Alzheimer’s: 120,000
– Statewide deaths from Alzheimer’s disease (2019): 2,782
– Number of Missouri residents serving as unpaid family caregivers: 194,000
– Total hours of unpaid care provided: 292,000,000
– Total value of unpaid care: $4,741,000
Additionally, findings from two national surveys appearing in the report reveal that discrimination is a barrier to Alzheimer’s and dementia care. More than one-third of Black Americans and nearly one-fifth of Hispanic Americans and Asian Americans believe 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.
Discrimination is a barrier to Alzheimer’s and dementia care for people of color
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 believe it is harder for them to get excellent care for Alzheimer’s disease or other dementias. Likewise, 2 in 5 Hispanic Americans believe their own race or ethnicity makes it harder to get care, as do one-third of Asian Americans.
Nearly two-thirds of Black Americans believe that medical research is biased against people of color — a view shared by substantial numbers of Asian Americans and Hispanic Americans as well. Only half of Black Americans trust a future cure for Alzheimer’s will be shared equally regardless of race, color or ethnicity.
Fewer than half of Black Americans feel confident they have access to providers who understand their ethnic or racial background and experiences, and only about 3 in 5 Asian Americans and Hispanics likewise feel confident.
The experiences and views of discrimination expressed by respondents in both surveys are also reflected in their views on clinical trial participation.
Black Americans have less interest in clinical research trials to prevent or slow the progression of Alzheimer’s disease. White Americans are most likely to express interest, followed by Hispanic Americans, Asian Americans and lastly, Black Americans.
The most common reason cited for not participating in clinical trials among all racial/ethnic groups is not wanting to be a “guinea pig.” In addition, almost half of Black Americans worry that treatments might cause sickness. They are also twice as likely as other groups to say they “don’t trust medical research.” And they are more than twice as likely as other racial or ethnic groups to say they “might not be treated fairly.”
As noted in the 2021 Facts and Figures report, health and socioeconomic disparities and systemic racism contribute to increased Alzheimer’s and dementia risk in communities of color. According to the report, older Blacks and Hispanics are also disproportionately more likely to have Alzheimer’s and other dementias. In addition, both groups are more likely to have missed diagnoses than older whites.
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 Missouri, there were 1,037 more deaths from Alzheimer’s and dementia in 2020 than compared to averages over the past five years – a 20% 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.”
To learn more about this report visit alz.org/facts.
Sarah Lovegreen is the Vice President of Programs for the Greater Missouri Alzheimer’s Association.
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