ABSTRACT
BACKGROUND: Persons living with dementia (PLWD) and family care partners (CPs) want to improve their health, maintain independence, and enhance well-being. Multi-domain interventions towards this goal are needed, but few are available and fewer were co-created with PLWD, CPs, and program providers. The objective of the DELIGHT project is to use a participatory approach to co-design a feasible, effective multi-domain intervention (the DELIGHT program) that meets the health and well-being goals of PLWD and CPs. METHOD: Using a participatory approach, the DELIGHT project is guided by a core team of researchers, PLWD, CPs, and an Alzheimer Society representative. The co-design team included the core team and additional PLWD/CPs, exercise professionals, dietitians, health care professionals, and community service providers (n=29). Due to COVID-19, research team meetings have been virtual since May 2020. The co-design was planned for four in-person, half-day sessions but was transitioned to six online, 1.5-hour sessions, using small breakout rooms for discussion. The co-design meetings focused on identifying target population, key outcomes of the program and developing program components and structure. During co-design meetings, two or three guiding questions were set to focus discussion on a specific topic (e.g., exercise). The final co-design session focused on the overall structure of the DELIGHT program. The core team then reflected on co-design discussions and decisions and made final decisions on program structure. Program resources were iteratively designed with the core team, co-design team, and other external stakeholders (including an illustrator). RESULT: The DELIGHT program is designed to promote well-being among PLWD and CP. Engagement soon after diagnosis is a goal. The program will meet twice per week for one hour of exercise and thirty minutes of facilitated discussion/education with a healthy snack and social engagement. Education will focus on healthy eating, sleeping well, mental well-being, social connection, and physical activity. Program resources and manual are in development. CONCLUSION: The DELIGHT program was co-created by PLWD, CPs, researchers, and community stakeholders to meet the health and well-being goals of PLWD and CPs. The on-line and in-person program options will be piloted and evaluated in fall 2021. © 2021 the Alzheimer's Association.
ABSTRACT
BACKGROUND: Engaged 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. METHOD: The 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. RESULT: Surveys 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. CONCLUSION: Co-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. © 2021 the Alzheimer's Association.
ABSTRACT
Introduction: Personal Support Workers (PSWs) regularly enter private dwellings to care for clients. The work is low-paid, insecure and physically and emotionally demanding. In Ontario, the ‘assisting occupations in support of health services’ occupation ties with ‘motor vehicle and transit drivers’ for the worst rate of lost-time workers’ compensation claims (8% according to the Workers Safety & Insurance Board). Materials and Methods: This qualitative research included in-depth, semi-structured interviews with 16 key informants in government, industry, and advocacy organisations. Data were coded thematically, and analysis drew on Interpretive Policy Analysis. This research was approved by a university Research Ethics Board. Results: We found work conditions for PSWs worsened during the pandemic. Worldwide PPE shortages led to conserving PPE so that PSWs often had to use the same mask for all sites they visited in a day. A shortage of workers led to creation of rapid PSW education programs and caused elevated concern about training adequacy for complex care needs. Remote assessments limited supervisors’ ability to evaluate client conditions or home environments. Taking public transportation between client homes, others living in the home, and clients themselves, were seen as increasing risk of exposure to COVID-19. Participants described that PSWs may feel morally obliged to work despite the right to refuse unsafe work. Conclusion: Some emergency policies had unintended consequences that elevated risk for workers and their clients.