FC11: Guided low-intensity behavioural activation intervention delivery preferences among people with dementia, informal caregivers, and professional stakeholders: a qualitative study (the INVOLVERA Study)

Abstract

Background:Despite a need to provide support to people with dementia and informal caregivers to live well with dementia, the availability of psychological interventions to enhance wellbeing and support mental health problems such as depression for people with dementia are limited. A potential solution is behavioural activation, an evidence-based intervention for depression that seeks to target behavioural avoidance. Behavioural activation can be delivered in a written self-help format, with support provided by an informal caregiver, who in turn receives guidance from a healthcare professional. However, it is necessary to develop and tailor self-help interventions to the needs and preferences of specific populations.Objective:To explore the needs and preferences of people with dementia, informal caregivers, and professional stakeholders to ensure cultural appropriateness, relevancy, and acceptability of the intervention.Methods:Participatory action research with co-design principles using semi-structured interviews and focus groups. People with dementia (n=8), informal caregivers (n=19), healthcare professionals (n=18), and community stakeholders (n=7) were provided with draft versions of the behavioral activation written self-help intervention and a proposed intervention delivery model. Open-ended questions explored preferences concerning preferred intervention delivery setting, type of support and guidance provided, perceived relevance of the intervention content and language, and ways to enhance relevancy, cultural appropriateness, and acceptability.Results:Analysis resulted in an overarching theme: Tailoring and flexibility, and three categories: Intervention process, material and context; Support and guidance; and Time. Results informed adaptations to the intervention content and delivery model, including: (1) reducing the amount of material to minimise treatment burden; (2) increasing the relevance of case stories and illustrations to Swedish society and culture; (3) modernising the design and illustrations; (4) including a case story of a person with young onset-dementia; (5) increasing the flexibility of the delivery model (e.g., delivery outside of traditional health care settings); and (6) providing additional guidance to informal caregivers.Conclusion:Stakeholders expressed a need for tailoring and flexibility throughout intervention delivery, and for cultural adaptations to intervention content to improve perceived appropriateness and relevance. A planned feasibility study will examine the feasibility, acceptability, relevancy and cultural appropriateness of the intervention and delivery model.