An embedded qualitative study of the experiences of people with dementia, their caregivers and volunteer older adults who participated in the CREST resilience-building psychosocial intervention

Abstract Background A novel Complex REsilience-building psychoSocial intervenTion (CREST) targeted at people with dementia, their informal carers, general practitioners and the wider community with the aim of increasing resilience and strengthening the personal attributes or external assets of people with dementia living at home, in the community, was developed. It included three components: cognitive stimulation therapy (CST), physical exercise and dementia education. A non-randomised feasibility study was conducted of the CREST intervention, the aim of which was to inform the design of a future randomised controlled trial. This article presents the findings from the qualitative component of the CREST intervention feasibility study, describing the experience of the people with dementia and their caregivers who participated and the volunteer older adults who supported the intervention. Methods A descriptive qualitative research approach using semi-structured interviews was undertaken. Key stakeholders (people with dementia (n = 9), their caregivers (n = 9) and the volunteer older adults from the physical exercise component (n = 9)) were interviewed about the intervention and the perceived impact of their participation. Results The social aspect of the CREST intervention proved to be important for all three groups. Attendance remained high throughout the intervention. The people with dementia spoke positively about their participation in the CST and exercise components of the CREST intervention. The caregivers liked receiving coping strategies focused on how to communicate better with the person they cared for and how to better manage their own self-care and they liked the group element of the programme. The volunteer older adults supported the people with dementia in taking part in the exercise component, motivating them to do the exercises and helping with social interaction within the group. The volunteers gained exposure to the illness and as a result understood more about dementia and felt better equipped to communicate and deal with people with dementia. Conclusion Participation in the CREST intervention produced a positive impact on all three groups. The social element of the intervention was noted by everybody and was regarded as being beneficial. Qualitative insights emphasised the value of embedding qualitative research within feasibility studies to inform future intervention design. Further research should focus on conducting a full-scale randomised controlled trial to evaluate CREST’s effectiveness and explore its application to individuals with more advanced dementia. Trial registration ISRCTN25294519.