Development of a self‐help behavioural activation intervention INVOLVERA for people with dementia: a qualitative study

Abstract

AbstractBackgroundDespite dementia being highly prevalent there is a lack of interventions to support people with dementia, and their informal caregivers, to live well. A guided, self‐help, behavioural activation‐based intervention (INVOLVERA), designed to support people with dementia to re‐engage with pleasurable, routine, and self‐care activities they have stopped doing, may represent a solution (Svedin et al., 2021). An innovative aspect of INVOLVERA is that support to the person with dementia to use INVOLVERA is provided by an informal caregiver, who themselves receives guidance from a healthcare professional. To enhance intervention acceptability and relevance interventions should meet the needs and preferences of the target population. Following Phase I (Development) of the Medical Research Council’s Framework for the development of complex interventions (Skivington et al., 2021), this study explores the needs and preferences of people with dementia, informal caregivers, and professional stakeholders to enhance the acceptability and relevancy of INVOLVERA for people with dementia.MethodsSemi‐structured interviews and focus group discussions were held with people with dementia (n = 8), informal caregivers (n = 19), healthcare professionals (n = 18), and community stakeholders (n = 7). A written draft of INVOLVERA and proposed intervention delivery model were provided to participants. Open‐ended questions explored intervention content, language and intervention delivery preferences. Data were analysed using manifest content analysis.ResultsOne overarching theme: Tailoring and flexibility, and three categories: Intervention process, material and context; Support and guidance; and Time derived from analysis. Results informed the following adaptations: (1) increased flexibility of intervention delivery (e.g., outside of traditional healthcare settings); (2) additional guidance and training to informal caregivers; (3) reduced written material (to minimise treatment burden); (4) modernisation of design and illustrations; (5) improved relevance of case stories and illustrations to the Swedish context; and (6) increased diversity of persons in case stories.ConclusionThis study highlights the importance of developing interventions alongside stakeholders. We anticipate the approach will optimise the acceptability and relevancy of INVOLVERA. Next, we will examine the acceptability and feasibility of INVOLVERA.