Background Alzheimer disease and related dementias (ADRD) are increasingly common conditions that disrupt the lives of persons living with dementia and their spousal care partners. At the time of ADRD diagnoses, many couples experience challenges that produce emotional distress and relationship strain. At present, there are no interventions to address these challenges early after diagnoses to promote positive adjustment. Objective The study protocol described here is part of the first phase of a larger program of research that aims to develop, adapt, and establish the feasibility of Resilient Together for Dementia (RT-ADRD), a novel dyadic skills-based intervention to be delivered over live video early after diagnosis, with the goal of preventing chronic emotional distress. This study will elicit and systematically summarize perspectives of ADRD medical stakeholders to inform the procedures (eg, recruitment and screening methods, eligibility, timing of intervention, and intervention delivery) of the first iteration of RT-ADRD prior to pilot-testing. Methods We will recruit interdisciplinary medical stakeholders (eg, neurologists, social workers, neuropsychologists, care coordinators, and speech language pathologists) from academic medical center clinics in the departments treating persons living with dementia such as neurology, psychiatry, and geriatric medicine via flyers and word-of-mouth referrals from clinic directors and members of relevant organizations (eg, dementia care collaboratives and Alzheimer disease research centers). The participants will complete electronic screening and consent procedures. Consenting individuals will then participate in a 30- to 60-minute qualitative virtual focus group, held either via telephone or Zoom, using an interview guide designed to assess provider experiences with postdiagnosis clinical care and to gather feedback on the proposed RT-ADRD protocol. The participants will also have the opportunity to participate in an optional exit interview and web-based survey to gather additional feedback. Qualitative data will be analyzed using a hybrid inductive-deductive approach and the framework method for thematic synthesis. We will conduct approximately 6 focus groups with 4-6 individuals in each group (maximum N=30 individuals; until saturation is reached). Results Data collection began in November 2022 and will continue through June 2023. We anticipate that the study will be completed by late 2023. Conclusions The results from this study will inform the procedures of the first live video RT-ADRD dyadic resiliency intervention focused on the prevention of chronic emotional and relational distress in couples shortly after ADRD diagnoses. Our study will allow us to gather comprehensive information from stakeholders on ways to best deliver our early prevention–focused intervention and gain detailed feedback on study procedures prior to further testing. International Registered Report Identifier (IRRID) DERR1-10.2196/45533
BACKGROUND Alzheimer’s disease and related dementias (ADRDs) are increasingly common conditions that disrupt the lives of persons living with dementia (PWDs) and their spousal care-partners (SPs). At the time of ADRD diagnoses, many PWD and SP dyads experience challenges that produce emotional distress and relationship strain. At present there are no interventions to address these challenges early after diagnoses to promote positive adjustment. OBJECTIVE The study protocol described here is part of the first phase of a larger program of research that aims to develop, adapt, and establish the feasibility of Resilient Together for Dementia (RT-ADRD), a novel dyadic skills-based intervention to be delivered over live video early after diagnosis, with the goal of preventing chronic emotional distress. The current study will elicit and systematically summarize perspectives of ADRD medical stakeholders to inform the procedures (e.g., recruitment and screening methods, eligibility, timing of intervention, intervention delivery) of the first iteration of RT-ADRD prior to pilot testing. METHODS We will recruit interdisciplinary medical stakeholders (e.g., neurologists, social workers, neuropsychologists, care coordinators, speech language pathologists) from Massachusetts General Hospital (MGH) and Mount Sinai Hospital (MSH) clinics in the departments treating PWDs such as Neurology, Psychiatry, and Geriatric Medicine via flyers and word-of-mouth referrals from clinic directors and members of relevant organizations (e.g., the MGH Dementia Care Collaborative and MSH Alzheimer’s Disease Research Center). Participants will complete electronic screening and consent procedures. Consenting individuals will then participate in a 30-60 minute qualitative virtual focus group, held either via telephone or Zoom, using an interview guide designed to assess provider experiences with post-diagnosis clinical care and to gather feedback on the proposed RT-ADRD protocol. Participants will also have the opportunity to participate in an optional exit interview and online survey to gather additional feedback. Qualitative data will be analyzed using a hybrid inductive-deductive approach and the Framework Method for thematic synthesis. We will conduct approximately 6 focus groups with 4-6 individuals in each group (maximum N = 30 individuals; until saturation is reached). RESULTS This study has been approved by the MGH Institutional Review Board. We anticipate that the study will be completed by late 2023. CONCLUSIONS Results from the present study will inform the procedures of the first live video RT-ADRD dyadic resiliency intervention focused on the prevention of chronic emotional and relational distress in PWD and SP dyads shortly after ADRD diagnoses. Our study will allow us to gather comprehensive information from stakeholders on ways to best deliver our early prevention-focused intervention and gain detailed feedback on study procedures prior to further testing.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
customersupport@researchsolutions.com
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply.
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.