DeCiDE

About DeCiDE

The DeCiDE project builds on the Caregiving Daughters project, with a specific focus on the experiences of adult daughters caring for a parent with dementia. The overall aim of DeCiDE is to improve access to psychological support for adult-daughter caregivers (daughter caregivers) of a parent with dementia.

People with dementia are living longer in the community, and reliance on informal caregivers is increasing. As dementia is progressive, caregiver burden tends to increase over time. Caregivers of people with dementia also report poorer health outcomes compared with those caring for an individual without dementia. Daughter caregivers of people with dementia may also have increased risk of depression and lack of support compared with partner caregivers. However, few studies have focused on the experiences, unmet needs, and intervention preferences of daughter caregivers of a parent with dementia.

Findings and next steps

We have conducted a series of qualitative studies to explore, from the perspective of daughter caregivers of a parent with dementia:

1. Experiences of accessing and receiving formal and informal support in Sweden
2. Challenges experienced in the caregiver role
   In these studies, daughter caregivers reported a mismatch between the support they received and their needs, highlighting the importance of tailoring support to their specific situations and the dementia trajectory.

They also described challenges related to ongoing loss and grief, as well as balancing multiple roles (e.g., employment and their own family) alongside caregiving. These findings are being used to inform the development of a tailored psychological intervention for adult daughters caring for a parent with dementia.