This opinion was supported by more than one-third of Black Americans (36%), and nearly one-fifth of Asian Americans (19%) and Hispanic Americans (18%).
Furthermore, the majority of non-white caregivers surveyed experienced discrimination when engaging in medical practice to treat patients.
The two surveys were published in a special report, “Race, Ethnicity and Alzheimer’s in America,” which examined the experiences and perspectives of Asian, Black, Hispanic, Native, and white Americans in Alzheimer’s and dementia care.
Conducted by Versta Research, one survey collected information from adults in the U.S., and the other queried current or recent caregivers of adults, 50 or older, with cognitive issues. Respondents were asked about access to support and care services, trust in providers and the health care system, participation in research and clinical trials, and caregiver experiences.
For the first time, the report was published alongside the Alzheimer’s Association 2021 Alzheimer’s Disease Facts and Figures report, which outlined the latest national statistics on Alzheimer’s incidence, prevalence, mortality, costs of care, and impact on caregivers.
Respondents to the survey included 945 whites, 515 Blacks, 541 Hispanics, and 412 Asians. Additionally, 406 Native Americans were surveyed.
The findings revealed that 66% of Black Americans said it is more difficult to get excellent care for Alzheimer’s disease or other dementias. Similarly, 39% of Hispanic Americans and 40% of Native Americans believe their ethnicity makes it harder to get care, as do 34% of Asian Americans.
A total of 62% of Black Americans believe that medical research is biased against people of color — a view shared by 45% of Asian Americans, 40% of Native Americans, and 36% of Hispanic Americans. About half of Black Americans (53%) said a cure for Alzheimer’s would be shared equally, regardless of color or ethnicity.
Fewer than half of Native (47%) and Black Americans (48%) felt they have access to providers who understand their ethnic background and experiences, while about 3 in 5 Asian Americans (63%) and Hispanics (59%) said the same.
“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 Hill, PhD, of the Alzheimer’s Association, in a press release. “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.”
Discrimination extends beyond Alzheimer’s and dementia care, with the survey showing many non-white Americans having experienced discrimination in the healthcare system as a whole.
Experiencing discrimination when seeking health care was reported by 50% of Black Americans, 42% of Native Americans, and one-third of Asian Americans (34%), and Hispanic Americans (33%).
White Americans (82%) were most likely to express interest in clinical trials researching ways to prevent or slow the progression of Alzheimer’s, followed by Native Americans (81%), Hispanic Americans (78%), and Asian Americans (73%). Black Americans (at 67%) were the least interested group surveyed.
Not wanting to be a “guinea pig” was the most common reason for not participating in clinical research. Compared to other ethnic groups, Black Americans are also twice as likely to say they “don’t trust medical research,” and they “might not be treated fairly.”
Other key results found concern about developing Alzheimer’s was lowest among Native Americans (25%), Blacks (35%), and Hispanics (41%), compared with white participants (48%). Moreover, 35% of Native Americans and 28% of Hispanics do not believe they will live long enough to develop Alzheimer’s or another dementia.
Compared to white respondents, Hispanic, Black, and Native Americans are twice as likely to say they would not see a healthcare provider if they experience thinking or memory problems, while 21% of Black and 20% of Hispanic Americans say they would be insulted if a doctor suggested a cognitive assessment.
According to 64% of caregivers, providing healthcare is stressful, but nearly all (92%) said caregiving is rewarding.
Based on the 2021 Facts and Figures report, older Blacks and Hispanics are more likely to have Alzheimer’s and other dementias and to have missed diagnoses than older white Americans.
“We must continue to accelerate efforts to engage more people from underrepresented populations in Alzheimer’s disease research and clinical trials,” said Maria Carrillo, PhD, of the Alzheimer’s Association. “If trials do not include diverse participants, it is impossible to get a complete understanding of how racial and ethnic differences may affect the benefit and safety of potential treatments. Future clinical trial structures and recruitment efforts must lead to a better representation of the entire population, so everyone benefits from advances in Alzheimer’s and dementia research.”
The report also stated an estimated 6.2 million Americans, 65 years and older, are living with Alzheimer’s-related dementia in 2021, and 11.3% of those have Alzheimer’s dementia, of which two-thirds are women.
In 2020, more than 11 million caregivers of people with dementia provided an estimated 15.3 billion hours of unpaid care, valued at $257 billion. About two-thirds of dementia caregivers are women, and one-third of these are daughters. Forty-one percent of these caregivers have a household income of $50,000 or less.
Excluding unpaid caregiving, total payments for all people with Alzheimer’s or other dementias are estimated to be $355 billion in 2021, with Medicare and Medicaid expected to cover $239 billion (67%) of those payments. The overall lifetime cost of care for someone with dementia is estimated at $373,527.
The report also examines the impact of the COVID-19 pandemic on people living with Alzheimer’s, which showed at least 42,000 more deaths from Alzheimer’s and other dementias in 2020 than the previous five years — a 16% increase. The pandemic has also made dementia care challenging with the shutdown of adult care centers and no visitations allowed in long-term care homes. This has caused “emotional distress and other negative outcomes among caregivers.”
Along with representatives from more than 30 countries, the Alzheimer’s Association has formed a consortium to study the consequences of COVID-19 on the brain and nervous system in people of different ages and genetic backgrounds.
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