Learning from Recruitment Challenges: Barriers to Diagnosis, Treatment, and Research Participation for Latinos with Symptoms of Alzheimer's Disease

Background and Purpose

Accompanying the tremendous growth of Latino older adults in the US will be a dramatic increase in the number suffering from Alzheimer's disease (AD). Latino AD family caregivers face special challenges, and may be particularly affected by caregiving ( Janevic & Connell, 2001). Thus, researching the experiences and service needs of Latinos with AD and their family caregivers is becoming increasingly important. However, the difficulties of recruiting and retaining minority older adults in research, particularly in dementia studies, are well documented (Nichols et al., 2004), limiting our understanding of how best to treat and support these patients and caregivers. This presentation describes barriers to participation encountered by 29 potential participants in a study intended to evaluate a supportive intervention for Latino AD family caregivers. Understanding the ways these barriers manifest and are experienced by Latino caregivers increases our capacity to provide relevant and accessible education to Latino communities regarding AD, and appropriate medical and psychosocial services to patients and families.

Methods

Fliers posted in relevant agencies in New York City neighborhoods targeted for high concentrations of Latinos yielded 39 potential study participants. Nineteen were ineligible due to lack of an existing AD diagnosis, 10 felt too overwhelmed to ultimately participate, and 10 enrolled in the study. Systematic written records of all contacts and reasons for non-participation were analyzed for core concepts using a categorical-content approach to narrative analysis (Leiblich, Tuval-Mashiach, & Zilber, 1998).

Results

There were two core reasons for study non-participation. First, 19 caregivers did not meet eligibility criteria of an existing AD diagnosis for their family member, despite what were described as long-standing and significant memory loss, confusion, and behavioral changes. Three primary reasons were given for lacking a diagnosis: (1) perception of these symptoms as normal aspects of aging, preventing recognition of the need for evaluation and treatment (2) lack of information about AD and relevant services, compromising early diagnosis and intervention (3) financial, language, transportation and immigration status barriers which respondents perceived as precluding access to diagnosis and treatment. The second core reason for study non-participation, reported by 10 caregivers, was feeling so overwhelmed that even participation in an intervention intended to be supportive was perceived as too onerous.

Conclusions and Implications

The barriers to recruiting Latino caregivers into an AD study mirror barriers to services reported in the literature for caregivers in general and minority caregivers in particular, and have yet to be adequately addressed. Successful models of AD educational programs to minority older adults do exist (for example Valle et al., 2006). Similarly, there are descriptions in the literature of diagnostic and treatment services that are truly accessible- financially, linguistically, geographically, and culturally (Aranda et al., 2003). Such promising strategies and models must be evaluated and replicated. Knowledge regarding AD and relevant, culturally-informed diagnostic and treatment services accessible to Latinos are preconditions for reducing health disparities and for simultaneously creating a pool of Latinos interested in participating, and ultimately benefiting from, AD research studies.