Safe Spaces for Shared Stories: Ethical Reflections in Dementia Conversation Groups.

Aims: To our knowledge, limited research has explored how people with dementia benefit from
participating in conversation groups. This study investigates facilitators’ perspectives in groups for people
with dementia and their families, within the COST Action project Ethics in Dementia (EDEM). The aim was
to examine how ethical issues are conveyed and received in such conversation groups.
Methods: A descriptive-qualitative design was employed. Thirty in-depth individual interviews were
conducted with facilitators of conversation groups in Denmark, Ireland, Israel, Italy, Lithuania and Norway,
using a semi-structured interview guide. First, a national site-specific inductive content analysis was
applied. Second, a cross-national meta-theme analysis was conducted to explore and understand both
similarities and differences in themes across the countries.
Results: The analysis revealed three overall themes with sub-themes:1) Expressing feelings related
to dementia (the experience of various losses; fear for the future and for becoming a burden; feelings
related to dementia diagnosis)2) Sharing relational challenges in life with peers (changes in family and
interpersonal relationships; loss of social connection and sense of belonging; changes in intimacy and
sexual relationships3) Experiencing mutual recognition and acceptance (engaging in social interactions; to
be seen as a person, not a diagnosis; being able to contribute and exert influence
Conclusion: The findings indicate that conversation groups serve as a supportive and safe environment
for individuals living with dementia to articulate their emotions and reflect on the challenges they face.
These groups facilitate open dialogue on sensitive topics, including ethical dimensions of living with
dementia. Participants report a sense of acceptance and safety, which enables them to share personal
experiences and engage with like-minded others.