Oscar Blomberg: Giving voice to people with dementia and their informal caregivers: Informing the development of complex interventions

Abstract

This thesis informed the development of complex interventions to support people with dementia and depression, and their informal caregivers (caregivers), to live well. The thesis was embedded within two parallel research projects, INVOLVERA (Study I & II) and DeCiDE (Study III & IV), both situated within the MRC framework intervention development phase. 

Study I, a mixed-methods systematic review, aimed to examine the effectiveness of psychological interventions to improve mental health and psychological well-being in people with dementia or mild cognitive impairment; examine the effectiveness of these interventions to improve mental health and psychological well-being in caregivers; examine potential clinical and methodological moderators associated with effectiveness; explore factors associated with the acceptability of psychological interventions from the perspective of key interest-holders; and examine the completeness and quality of intervention reporting. A small effect size favoring the intervention was found for depressive symptoms for people with dementia or MCI, and no effect for caregivers. Factors associated with intervention acceptability according to the Theoretical Framework of Acceptability were identified. Intervention reporting completeness and quality was generally inadequate. 

Study II, a qualitative study, aimed to explore the needs and preferences of key interest-holders concerning the content and delivery model of a guided LI-BA intervention for people with dementia, and adapt the intervention to ensure cultural appropriateness, relevancy, and acceptability to people with dementia and their caregivers. Content analysis generated three categories: Content, Delivery procedures, and Illness trajectory. Findings informed adaptations to increase intervention inclusiveness and take into account dementia symptomatology. 

Study III, a qualitative study, aimed to explore the experiences of accessing and receiving formal and informal support among daughter caregivers of people living with dementia. Using reflexive thematic analysis, we generated two themes: Types of support – describing the caregiver support context, and Mismatched support – describing support as inadequate and complex to navigate. 

Study IV, a qualitative study, aimed to explore challenges experienced by daughter caregivers, reporting varying severity of depressive symptoms, of a parent with dementia. Using reflexive thematic analysis, we generated an overarching theme, Changing roles and expectations over time, and three themes: Puzzle of life – Balancing roles, Caregiver role – Expectations and role reversal, and Relationship with the parent – Reciprocity and loss. Findings described daughter caregivers’ challenges with balancing multiple roles with limited time and energy, role expectations, their relationship with their parent, and anticipatory grief.

This thesis contributes to literature on developing interventions tailored to needs of people with dementia and daughter caregivers.