Learning from recruitment challenges: barriers to diagnosis, treatment, and research participation for Latinos with symptoms of Alzheimer's disease.
This article discusses barriers to diagnosis and treatment of Alzheimer's disease (AD) and concomitantly to participation in AD research as elicited from 29 potential Latino participants who ultimately did not enroll in a study evaluating a caregiver intervention. Nearly half of all individuals contacting the researcher about the intervention study failed to meet criteria stipulating an existing AD diagnosis. Barriers to obtaining a diagnosis include lack of knowledge about AD, perceptions of memory loss as normal aging, and structural barriers to accessing care. A quarter of caregivers contacting the researcher felt too overwhelmed to participate. Many of these barriers have been previously identified as challenges to treatment, suggesting this is not just a methodological research problem, but inextricably tied to larger issues of AD knowledge and service accessibility. Engaging Latino communities equitably in the assessment of needs and the process of addressing them, thus ensuring the validity and applicability of the research and findings, is important both for increasing this group's participation in relevant studies and for addressing existing health disparities.
Gelman
Caroline Rosenthal
CR
Silver School of Social Work, New York University, New York, New York, USA. csr6@nyu.edu
D000375:Aging; D000544:Alzheimer Disease / Q000175:diagnosis / Q000208:ethnology* / Q000628:therapy; D017028:Caregivers / Q000523:psychology; D002986:Clinical Trials as Topic / Q000379:methods*; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006297:Health Services Accessibility / Q000458:organization & administration; D006630:Hispanic or Latino / Q000523:psychology*; D006801:Humans; D008297:Male; D010465:Perception