Evaluating the co‐design of a program to supporting living well with dementia

Abstract

AbstractBackgroundEngaged research involves stakeholders as active partners in the research process, not just as research participants. Engaged dementia research can improve the relevance and quality of research, empower persons living dementia (PLWD) and family care partners, and acknowledge their expertise gained through lived experience. Conducting engaged research is challenging during COVID‐19 when in‐person interactions are difficult or impossible. The Dementia Lifestyle Intervention for Getting Health Together (DELIGHT) project used an online, engaged research approach to co‐design the DELIGHT program, a 12‐week program to support the health and well‐being goals of PLWD and care partners. Here, we used mixed‐methods to evaluate the DELIGHT co‐design process, its alignment with an Authentic Partnership approach, and experiences, satisfaction, and suggestions for future online co‐design processes.MethodThe DELIGHT project engaged 29 people in the co‐design process during Summer 2020, including PLWD, care partners, service/program providers, healthcare providers, and researchers. The co‐design team met over six, 1.5‐hour online meetings (via Zoom) to develop the program. Although the co‐design process is on‐going, evaluation focused on this first phase of the co‐design process. A 17‐item survey assessed alignment with an Authentic Partnerships approach. Focus groups and interviews used a semi‐structured guide to assess experiences, satisfaction, and suggestions for future on‐line co‐design.ResultSurveys were completed by 11 co‐design members, and 11 co‐design members participated in interviews or focus groups (not all completed both). Initial analysis of survey results indicates co‐design members felt respected and safe in the co‐design process, felt their perspectives and opinions were valued, and valued the contributions of other members (100% agreed or strongly agreed). All survey respondents felt they gained knowledge and strategies for living well with dementia during the co‐design process. All survey respondents also strongly agreed that the DELIGHT program, when implemented, will have a positive impact on PLWD and care partners. Analysis of interviews/focus groups is ongoing and will be available in Spring 2021.ConclusionCo‐design members expressed high satisfaction with the process and felt their experiences were valued and heard. All members expressed a strong belief that the program developed will benefit PLWD and care partners.