The Feasibility and Perceived Impact of the DEmentia Lifestyle Intervention for Getting Healthy Together (DELIGHT) Program for People Living with Dementia and their Care Partners

Abstract

Improving supports to enhance quality of life for people living with dementia is a priority of research and practice. Multimodal lifestyle interventions that include components such as physical activity, nutrition, and social activity may help support quality of life and function for people living with dementia and their care partners. The DEmentia Lifestyle Intervention Program for Getting Healthy Together (DELIGHT) was co-designed by people with dementia, care partners, community stakeholders, and researchers with the goal of promoting ‘living well’ with dementia. The DELIGHT program incorporates exercise and shared learning on topics related to health and wellbeing (healthy eating, physical activity, social support, mental wellbeing, sleep). The aim here was to assess the feasibility and perceived impact of the 8-week in-person DELIGHT program. Feasibility was evaluated through recruitment rate (target: 6 per month), attendance (target: 75% of sessions), retention (target: 80% of participants who started the program complete post-program assessments), and program acceptability. Perceived impact and challenges and were also assessed through semi-structured interviews with participants, study leaders, and volunteers. Interview transcripts were analyzed using inductive thematic analysis to identify and describe experience with, and impact of, the DELIGHT program. A separate deductive content analysis was used to identify issues related to feasibility (challenges and recommendations). Exploratory effectiveness outcomes included quality of life, physical activity, balance confidence, exercise self-efficacy, nutrition risk, social connectedness, social isolation, balance, strength, and fitness. Quantitative and qualitative results were compared to support a richer interpretation of the programs impact on participants. Seventeen participants completed the DELIGHT program, recruited at an average of 4.25 participants/month, which was lower than our feasibility target. All participants completed the program with an average attendance of 89.7% and 16 (94%) completed post-program evaluation. All (100%) of participants (n=16) and volunteers/study personnel (n=7) described enjoying their participation in the DELIGHT program and reported that they would be interested in participating again. Four themes related to the impact of and satisfaction with the DELIGHT program were identified from interviews. Making the most of today for tomorrow describes the immediate and lasting emotional and physical benefits of the program and the empowerment participants felt over their health, inspiring lifestyle changes. These aligned with group average improvement on assessments of physical function and physical activity. Broadening perspectives and taking action describes how participants and volunteers challenged stigma, providing hope and inspiring action to continue the conversation. Connecting and caring describes the feelings of comfort and belonging among participants and volunteers, inspiring participants to engage and go outside their comfort zone. These aligned with the group average improvement of social connection and maintained low levels of loneliness. Learning together and sharing knowledge describes how participants and volunteers learned from each other’s unique knowledge and perspectives, and the paramount value of learning from experience. All themes generally suggest that DELIGHT supported participants in improving wellbeing however, quantitative measures of quality of life showed a decrease of one point in average scores. Results indicate DELIGHT is a feasible lifestyle intervention for people living with dementia and their care partners with promise for supporting wellbeing but more time may be required to recruit to the program. Further large-scale evaluation is warranted to examine the effectiveness of DELIGHT. In addition, adaptation of DELIGHT for specific ethno-cultural groups should be explored.