Background: Approximately 40% of people with dementia experience depression. Whilst psychological interventions are effective for the treatment of depression in dementia, access remains low. A behavioural activation self-help intervention, with support to the person with dementia to use the intervention provided by an informal caregiver, who themselves receives guidance from an occupational therapist (or other trained healthcare professional), may represent a solution. Objective: To develop a behavioral activation intervention targeting depression among people with dementia for the Swedish context together with key stakeholders.
Methods: Semi-structured interviews and focus groups were held with people with dementia (n=8), informal caregivers (n=19), healthcare professionals (n=18), and non-governmental organisations (n=7) and analysed using manifest content analysis. A Public Advisory Group, consisting of informal caregivers of people with dementia (n=4), worked alongside the research team to support the interpretation and sense-making of research findings and co-design of the intervention.
Results: An overarching theme ‘Tailoring and flexibility’ resulted from interviews and focus groups. Stakeholders expressed a need to adapt intervention material to increase relevancy and representativeness by: (1) adding multiple case stories to illustrate different life situations, age groups, ethnic backgrounds, and to increase relevance to Swedish society and culture; (2) designing new illustrations, as proposed illustrations were perceived old-fashioned and reinforced ageing and dementia stereotypes; and (3) reducing text to minimize treatment burden. Stakeholders also expressed a need for flexibility concerning intervention delivery and expressed a need for choice concerning: (1) location of guidance sessions to enable face-to-face sessions to be delivered in a familiar, safe, and convenient environment (e.g., home or familiar community setting); (2) mode of guidance (e.g., face-to-face, telephone, online); and (3) amount of guidance (e.g., frequency and number of guidance sessions).
Conclusions: Results informed the development of a tailored intervention, optimised to improve acceptability, feasibility, and relevancy for people with dementia and depression. A planned feasibility study will further examine feasibility and acceptability of the intervention. Public involvement: Our Public Advisory Group has worked closely together with the research team to support the interpretation and sense-making of research findings and co-design the intervention to increase acceptability and relevancy of the intervention.