Including ethnic minorities in dementia research: Recommendations from a scoping review.

Introduction: Ethnicity influences dementia etiology, prognosis, and treatment, while culture shapes help-seeking and care. Despite increasing population diversity in high-income settlement countries, ethnic minorities remain underrepresented in dementia research. We investigated approaches to enhance the recruitment, and consistent collection and analysis of variables relevant to, ethnic minorities in dementia studies to make recommendations for consistent practice in dementia research. Methods: We did a scoping review, searching Embase, PsycINFO, Medline, CENTRAL, and CINAHL between January 1, 2010 and January 7, 2020. Dementia clinical and cohort studies that actively recruited ethnic minorities in high-income countries were included. A steering group of experts developed criteria through which high-quality studies were identified. Results: Sixty-six articles were retrieved (51 observational; 15 experimental). Use of interpreters and translators (n = 17) was the most common method to facilitate participant recruitment. Race and ethnicity (n = 59) were the most common variables collected, followed by information on native language (n = 14), country of birth (n = 9), and length of time in country of settlement (n = 8). Thirty-three studies translated or used a culturally validated instrument. Twenty-three articles conducted subgroup analyses based on ethnicity. Six high-quality studies facilitated inclusion through community engagement, collected information on multiple aspects of ethnic diversity, and adjusted/substratified to analyze the impact of ethnicity on dementia. Discussion: We make recommendations for consistent recruitment, collection, and reporting of variables relating to ethnic and cultural diversity in dementia research.

Together We Make the Difference: National Strategy for Recruitment and Participation in Alzheimer's and Related Dementias Clinical Research.

The National Alzheimer's Project Act identifies the effective treatment and prevention of Alzheimer's by 2025 as an urgent public health mission. This priority is reflected in the recent increases in public funding that is accelerating Alzheimer's and related dementias research. Many drugs and clinical interventions are in rapid development, with the promising ones moving to clinical trials to be tested. There are currently more than 200 on-going clinical trials, seeking more than 270,000 participants, which will require screening of more than a million individuals. With the race to treatment, how inclusive will screenings be to ensure diversification of the citizens volunteering to become trial participants? Underrepresented groups are chronically under-enrolled in clinical research studies. This under-enrollment leads to conclusions about disease risk factors and processes without all the necessary data because the studies are not representative of all people and all life experiences.