PP-3 Understanding grief in rare dementia carers: insights from online bereavement groups

Introduction Carers of people with rare dementias experience prolonged and multifaceted grief, shaped by progressive interpersonal losses and limited public understanding of these conditions. Following bereavement, little is known about how carers express and process their grief within peer-support settings. Aims This study examined how bereaved carers of people with rare dementias articulate and navigate grief in online support groups, using the Dual Process Model (DPM) of coping with bereavement to identify loss-oriented (LO), restoration-oriented (RO), and oscillatory coping.1 Methods A longitudinal mixed-Methods analysis was conducted on 1,379 anonymised quotes from 47 online bereavement sessions (2020–2023). Linguistic Inquiry and Word Count (LIWC-22) profiled authenticity, emotional tone, authority, and analytic style, compared with normative conversation data.2 Directed content analysis applied the DPM to identify coping modes and refine its conceptualisation.3 Results Group dialogue was more open and affectively negative than typical conversation, aligning with participants’ reports of unexpected vulnerability within a rare space of belonging. Over time, language showed modest increases in authenticity and tone, suggesting growing safety and adaptation. Qualitative analysis identified themes of LO coping (continuing bonds, reconciling the person and the dementia), RO coping (identity reconstruction, self-care), and Oscillation—dynamic shifting, emotional suspension, or detachment between modes. Conclusion Rare dementia carers’ grief is non-linear and relational. While sharing features of other bereavement experiences, the rare dementia group context uniquely enables candid expression and mutual understanding. Impact Findings support the DPM as a practical framework for understanding bereavement in rare dementias and suggest its refinement to include emotional suspension within Oscillation. Insights can inform psychoeducation and support in bereavement. References Stroebe M, Schut H. The dual process model of coping with bereavement: rationale and description. Death Stud 1999;23:197–224. https://doi.org/10.1080/074811899201046 Boyd RL, Ashokkumar A, Seraj S, Pennebaker JW. 2022. The Development and Psychometric Properties of LIWC-22. Hsieh H-F, Shannon SE. 2005. Three approaches to qualitative content analysis. Qual. Health Res 2005;15:1277–1288. https://doi.org/10.1177/1049732305276687