Despite older racial and ethnic minorities (REMs) being more likely to develop dementia they are underrepresented in clinical trials focused on neurological disorders. Inclusion of REMs in dementia prevention studies is vital to reducing the impact of disparities in dementia risk. We conducted a systematic review to characterize the number of REM enrolled in brain health and prevention randomized controlled trials (RCTs). RTCs published from January 1, 2004 to April 21, 2020 were included. Participants were normal cognitive adults aged 45 years and older who participated in a Phase II or Phase III U.S. based preventative trial. Analyses were performed to examine differences in trial characteristics between RCTs that did and those that did not report race/ethnicity and to calculate the pooled proportion of each racial/ethnic group in randomized brain healthy prevention trials. A total of 42 studies consisting of 100,748 participants were included in the final analyses. A total of 26 (62%) reported some racial/ethnic identity data. The pooled proportion of REM participants was 0.256 (95% CI, 0.191, 0.326). There is a lack of racial/ethnic reporting of participants and REMs remain underrepresented in brain health prevention RCTs.
Objectives: To describe the development of CuidaTEXT: a tailored text message intervention to support Latino dementia family caregivers. Methods: CuidaTEXT is informed by the Stress Process Framework and Social Cognitive Theory. We developed and refined CuidaTEXT using a mixed-method approach that included thematic analysis and descriptive statistics. We followed six user-centered design stages, including the selection of design principles, software vendor collaboration, evidence-based foundation, caregiver and research/clinical advisory board guidance, sketching and prototyping, and usability testing among five Latino caregivers. Results: CuidaTEXT is a bilingual 6-month long intervention tailored to caregiver needs that includes: 1) 1-3 daily automatic messages (n=244) about logistics, dementia education, self-care, social support, end-of-life, care of the person with dementia, behavioral symptoms and problem-solving strategies; 2) 783 keyword-driven text messages for further help with the above topics; 3) live chat interaction with a coach for further help; 4) a 19-page reference booklet summarizing the purpose and functions of the intervention. CuidaTEXT's prototype scored 97 out of 100 in the System Usability Scale. Conclusions: CuidaTEXT's prototype demonstrated high usability among Latino caregivers. CuidaTEXT's feasibility is ready to be tested.
Background Latinx family caregivers of individuals with dementia face many barriers to caregiver support access. Interventions to alleviate these barriers are urgently needed. Objective This study aimed to describe the development of CuidaTEXT, a tailored SMS text messaging intervention to support Latinx family caregivers of individuals with dementia. Methods CuidaTEXT is informed by the stress process framework and social cognitive theory. We developed and refined CuidaTEXT using a mixed methods approach that included thematic analysis and descriptive statistics. We followed 6 user-centered design stages, namely, the selection of design principles, software vendor collaboration, evidence-based foundation, caregiver and research and clinical advisory board guidance, sketching and prototyping, and usability testing of the prototype of CuidaTEXT among 5 Latinx caregivers. Results CuidaTEXT is a bilingual 6-month-long SMS text messaging–based intervention tailored to caregiver needs that includes 1-3 daily automatic messages (n=244) about logistics, dementia education, self-care, social support, end of life, care of the person with dementia, behavioral symptoms, and problem-solving strategies; 783 keyword-driven text messages for further help with the aforementioned topics; live chat interaction with a coach for further help; and a 19-page reference booklet summarizing the purpose and functions of the intervention. The 5 Latinx caregivers who used the prototype of CuidaTEXT scored an average of 97 out of 100 on the System Usability Scale. Conclusions CuidaTEXT’s prototype demonstrated high usability among Latinx caregivers. CuidaTEXT’s feasibility is ready to be tested.
Despite older racial and ethnic minorities (REMs) being more likely to develop dementia they are underrepresented in clinical trials focused on neurological disorders. Inclusion of REMs in dementia prevention studies is vital to reducing the impact of disparities in dementia risk. We conducted a systematic review to characterize the number of REM enrolled in brain health and prevention randomized controlled trials (RCTs). RTCs published from January 1, 2004 to April 21, 2020 were included. Participants were normal cognitive adults aged 45 years and older who participated in a Phase II or Phase III U.S. based preventative trial. Analyses were performed to examine differences in trial characteristics between RCTs that did and those that did not report race/ethnicity and to calculate the pooled proportion of each racial/ethnic group in randomized brain healthy prevention trials. A total of 42 studies consisting of 100,748 participants were included in the final analyses. A total of 26 (62%) reported some racial/ethnic identity data. The pooled proportion of REM participants was 0.256 (95% CI, 0.191, 0.326). There is a lack of racial/ethnic reporting of participants and REMs remain underrepresented in brain health prevention RCTs.
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