Residency in rural Appalachia is linked with heightened morbidity and mortality due to a myriad of conditions, many of which are associated with increased risk and prevalence of Alzheimer’s disease and related dementias (ADRD). Despite this, access to and utilization of dementia-specific healthcare services in the region are limited. This study presents community-based stigma associated with enrollment in healthcare clinical research offered in rural Appalachia. Additional data from focus groups with care partners of people with memory impairment in rural Appalachia discuss implications of stigma in their communities. Findings elaborate on recruitment challenges associated with terminology, such as caregiver and dementia, as well as availability of diagnosticians. This study illustrates unique characteristics needed for community-based education programs tailored to the culture and customs of rural regions in order to increase utilization of healthcare for older adults at risk or living with ADRD.
The process of receiving a diagnosis of mild cognitive impairment (MCI) is overwhelming. Individuals may experience adaptive or maladaptive responses to the diagnosis. Five specific areas of maladaptive response were previously identified, including 1) failure to plan for future decline, 2) decreased compliance and interaction with medical care providers, 3) decreased confidence and reduced social engagement, 4) increased physical limitations and mobility, and 5) decreased medication compliance. This pilot study reports on the delivery of the platform-based trial for persons diagnosed with MCI with survey data and qualitative focus groups data (n=38). The study consisted of a single-site platform trial examining the intervention group. Using this approach allowed the participants to explore different biopsychosocial arms of the intervention. Second, the platform design allowed researchers to determine the effects of the interventions on patient help-seeking and adherence behavior in real-world care. Feasibility, opportunities, and challenges will be discussed. Opportunities include the group’s cohesion with the group-based intervention, which increased engagement for study group participation. Additionally, participants were most susceptive to intervention components that were novel (i.e., mindfulness) and administered by a professional (i.e., pharmacist, physical therapist) as opposed to self-facilitated activities. Challenges include frequency of study visits, the study partner requirement, and the in-person delivery of the intervention. These challenges were further compounded by the COVID-19 pandemic. Findings from this study offer considerations in implementing support programming and clinical research for persons diagnosed with MCI. The presentation will also include discussion on COVID-19 pandemic-related protocol modifications of this intervention study.
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