Dementia Care Research and Psychosocial Factors

Area of Science:

• Neurology
• Psychology
• Sociology

Background:

• Current dementia research primarily focuses on spousal or adult child caregivers, neglecting other family members.
• There's a significant gap in understanding the impact of rare dementia on the entire family system, particularly for young-onset cases.
• Existing support models are insufficient for the diverse needs of families facing rare dementias.

Purpose of the Study:

• To understand the impact of rare dementia on multiple generations within a family system.
• To identify characteristics of effective multi- or intergenerational support models.
• To pilot a novel data collection method for engaging youth and young adults in rare dementia research.

Main Methods:

• In-depth interviews with spouses and parents of individuals with young-onset dementia (N=9).
• Direct messaging via Instagram (text, video, audio) with youth (12-17, N=3) and young adults (18-24, N=5).
• Virtual group interviews to explore participants' experiences with Instagram as a research tool.
• Data analyzed using reflexive thematic analysis.

Main Results:

• Support for the entire family system or tailored to individual members (children, siblings, parents, friends) is largely absent.
• Children and parent participants shared experiences of grief, loss, and interrupted development, alongside connection and normalization.
• Parents expressed a strong desire for guidance on supporting their children.
• Instagram was found to be a convenient and accessible, though variable in data quality, research participation method.

Conclusions:

• The study's findings are informing a larger investigation into family-centered rare dementia support.
• Participatory approaches are crucial for developing effective support systems for families affected by rare dementias.
• Further research is needed to develop and evaluate comprehensive, family-centered care models for rare dementia.