Even those individuals seeking or receiving care in primary care settings are not always forthcoming about their cognitive status. Only 56% of respondents in a recent survey of patients who had experienced subjective cognitive decline reported that they had discussed it with their HCP.4 This reticence is thought to be influenced by multiple factors, including distrust of the medical establishment, religious or spiritual beliefs, cultural or family beliefs and expectations about geriatric care, and lack of understanding about normal aging vs cognitive disorders. Furthermore, the sensitivity and specificity of current diagnostic tests for dementia have been questioned for nonwhite populations given the clinical presentation of dementia can vary across ethnoracial groups.5
As Luria noted, cognitive assessment tools developed and validated for use with one culture frequently results in experimental failures and are not valid for use with other cultural groups.1 Cognitive testing results are influenced by educational and cultural factors, and this is one of the challenges in correctly diagnosing those of differing ethnoracial backgrounds. Individuals in racial and ethnic minorities may have limited formal education and/or high illiteracy rates and/or cultural nuances to problem solving, thinking, and memory that may not be reflected in current assessment tools.1
There is hope that testing bias could be altered or eliminated using neuroimaging or biomarkers. However, the Alzheimer’s Disease Neuroimaging Initiative study of patients in the US and Canada included < 5% African American or Hispanic participants in its total sample. Few studies have systematically examined ethnoracial differences in amyloid positron emission tomography, and none have been published to date in ethnoracially diverse groups that assess the more recently developed tau imaging agents.1
Diversity Among Caregivers
The research community must make greater efforts to improve recruitment of more diverse populations into clinical trials. Recent efforts by the National Institute on Aging in conjunction with the Alzheimer’s Association include developing a national strategy for clinical research recruitment and retention with an emphasis on local and diverse populations. This strategy should include various training modules, webinars, and similar educational opportunities for researchers and clinical HCPs, including HCPs from diverse ethnoracial backgrounds, to implement culturally appropriate research methodologies across these diverse groups. It is important that these educational materials be disseminated to caregivers in a way they can comprehend, as the impact on caregivers of those with Alzheimer disease and related dementias is considerable.
The US currently has 7 unpaid caregivers for every adult in the high-risk group of patients aged ≥ 65 years, but this will decline to a ratio of 4:1 by 2030.4 More than two-thirds of caregivers are non-Hispanic white, while 10% are African American, 8% are Hispanic, and 5% are Asian.3 About 34% of caregivers are themselves aged ≥ 65 years and are at risk for declines in their own health given the time and financial requirements of caring for someone else.3 In 2017, the 16.1 million family and other unpaid caregivers of people with dementia provided an estimated 18.4 billion hours of unpaid care, often resulting in considerable financial strain for these individuals. More than half of the caregivers report providing ≥ 21 hours of care per week; and 42% reported providing an average of 9 hours of care per day for people with dementia.
Caregivers report increased stress, sleep deprivation, depression and anxiety, and uncertainty in their ability to provide quality care to the individual with Alzheimer or a related dementia.3 The disproportionate prevalence of Alzheimer disease and other dementias in racially and ethnically diverse populations could further magnify already existing socioeconomic and other disparities and potentially lead to worsening of health outcomes in these groups.4 Given that minority populations tend to cluster geographically, community partnerships with local churches, senior centers, community centers, and other nontraditional settings may offer better opportunities for connecting with caregivers.