RESUMEN
Background: An 8-week educational intervention co-taught by medical students and faculty was designed to foster communication between clinical researchers and populations of interest to ultimately increase participation in clinical research by older adults, including underrepresented groups. Weekly topics focused on age-related changes and health conditions, socio-contextual factors impacting aging populations, and wellness strategies. Objectives: To evaluate the successes and weaknesses of an educational intervention aimed at increasing the participation of older adults in clinical research. Design: A focus group was assembled after an 8-week educational intervention, titled DREAMS, to obtain participants' feedback on the program, following a pre-formulated interview guide. Settings: Participants were interviewed in a health center office environment in the United States of America in April of 2016. Participants: A post-intervention focus group was conducted with a group of eight older adults (mean age = 75.8 ± 11.4 years) from 51 total participants who completed the intervention. Methods: The focus group was interviewed loosely following a pre-formed question guide. Participants were encouraged to give honest feedback. The conversation was recorded, transcribed verbatim, and analyzed using thematic analyses. Results: While participants viewed most aspects of the study as a success and stated that it was a productive learning experience, most participants had suggestions for improvements in the program content and implementation. Specifically, the composition of and direction to small breakout groups should be carefully considered and planned in this population, and attention should be paid to the delivery of sensitive topic such as death and dementia. A clear main benefit of this programmatic approach is the development of a rapport amongst participants and between participants and clinical researchers. Conclusions: The results provide useful insights regarding improving participation among hard-to-reach and historically underrepresented groups of older adults in clinical research. Future iterations of this program and similar educational interventions can use these findings to better achieve the programmatic objectives.
RESUMEN
Corticobasal degeneration (CBD) has no available treatment to slow disease progression and generally resists drug therapy. Corticobasal degeneration has symptoms and decreased quality of life similar to Parkinson disease. Adapted Tango, a successful rehabilitation for Parkinson, may address CBD. A 63-yr-old African American man with CBD (alias: YD; CBD duration = 2 yrs) was evaluated for motor, cognitive, and psychosocial function before, immediately after, 1 mo after, and 6 mos after 12 wks of 20, biweekly 90-min adapted-tango lessons. After intervention, disease-related motor symptoms improved and YD reported fewer problems in nonmotor experiences of daily living, which include mood, cognition, pain, fatigue, etc. Motor symptoms remained above baseline at 6-mo posttest. YD's balance confidence improved after intervention but declined below baseline at 6-mo posttest. Quality of life was maintained despite worsened depression. YD improved or maintained executive function, and visuospatial function and attention at posttest and 1-mo posttest. At posttest, YD maintained mobility and improved on dynamic balance. At 1-mo posttest, most mobility measures had improved relative to baseline. However, YD showed executive function and overall motor decline 6 mos after intervention. Adapted tango may have temporarily slowed disease progression and improved or maintained mobility and cognition. Gains were poorly maintained after 6 mos. Further study is warranted.
Asunto(s)
Enfermedades de los Ganglios Basales/fisiopatología , Enfermedades de los Ganglios Basales/rehabilitación , Danzaterapia , Enfermedades Neurodegenerativas/fisiopatología , Enfermedades Neurodegenerativas/terapia , Actividades Cotidianas , Adaptación Fisiológica , Negro o Afroamericano , Cognición , Progresión de la Enfermedad , Humanos , Masculino , Persona de Mediana Edad , Calidad de Vida , Recuperación de la Función , Índice de Severidad de la EnfermedadRESUMEN
Alzheimer's disease (AD) is a devastating progressive neurodegenerative disease resulting in memory loss and a severe reduction in ability to perform activities of daily living. The role of caring for someone with AD frequently falls to female family members, often daughters. The burden of caregiving can increase stress and anxiety and cause health decline in the caregiver. The combination of ethnicity-related genetic factors promoting the development of dementias among African-Americans (AA) and the increased risk among women for developing AD means that AA women who are caregivers of a parent with AD are at great risk for developing dementias including AD. The proposed study would compare the cognitive, motor, and psychosocial benefits of a well-established 12 week, 20-lesson adapted Argentine Tango intervention (Nâ=â30) to a no-contact control group (Nâ=â10) in middle-aged (45-65 years) AA women who are caregivers of a parent with AD in the metro Atlanta area.