Dementia, Involvement, and the Psychology of Exclusion: Reflections from working with DASH Group
Ross Horsley
Psychology Placement Student
Oxleas
Reinhard Guss
Consultant Clinical Psychologist
Oxleas
Summary
Introduction: Experts by Experience (EbE) bring unique lived experience perspectives to NHS recruitment panels that shape their own care. People with dementia are routinely excluded from NHS involvement structures, which risks eroding personhood and reproducing stigma at a structural level.
Aims: To explore the lived experience of NHS involvement for people living with dementia; to co-produce a practical resource to support people living with dementia take part in interview panels as EbE’s.
Methods: One-on-one qualitative consultations were conducted with four members of the DASH (Dementia Assisting Self-Help) Group to explore their experiences with NHS recruitment panels, including supports and barriers to involvement. Data were analysed with an inductive approach to thematic analysis.
Findings: Five themes were identified: systemic exclusion from panel processes, invalidation of identity, involvement as a form of post-diagnostic care, the persistence of stigma around dementia, and individual differences in accessibility needs. Results of discussions and reflections informed the co-production of an interview prompt sheet to support people with dementia acting as EbE’s on NHS recruitment panels.
Discussion: Inaccessible involvement enacts malignant social psychology at a structural level. Co-production and flexible support for people with dementia represent a form of positive person work that upholds personhood by enabling involvement opportunities.