Abstract

Background: 

Cognitive Stimulation Therapy (CST) is an evidence-based group intervention for people with mild-to-moderate dementia. Rare dementias (RDs), including Primary Progressive Aphasia (PPA), Posterior Cortical Atrophy (PCA), and behavioural variant Frontotemporal Dementia (bvFTD), are often associated with earlier onset and distinct cognitive and psychosocial profiles, yet tailored support remains limited. Therefore, we aimed to adapt virtual CST for people with PPA, PCA, and bvFTD and evaluate feasibility and acceptability.

Methods: 

CST was adapted through an iterative process combining evidence from CST and rare dementia psychosocial intervention literature, consultation with nine rare dementia specialists and two Patient and Public Involvement leads, and 10 structured focus groups involving 10 people with RDs and eight care partners. Focus groups were conducted across three stages: introduction, feedback and adaptation, and taster-session evaluation. An ongoing single-arm, mixed-methods feasibility study aims to recruit 60 participants (20 per diagnosis). Participants receive 14 virtual CST sessions over seven weeks, delivered twice weekly in diagnosis-specific groups. Feasibility outcomes include recruitment, adherence (session attendance), retention (completion of follow-up measures), and acceptability. Adherence and retention rates of ≥75% indicate feasibility. Health resource use, cognition, quality of life, and engagement/independence are assessed pre- and post-intervention.

Results:

Adaptation focused on two domains across diagnostic presentations: content, including person-centred, age-appropriate activities and cognitive accessibility; and virtual delivery, including technical accessibility, remote facilitation, and online group interaction.

Nine groups have been completed, comprising participants with PCA (n=22), PPA (n=12), and bvFTD (n=9). Adherence (session attendance) was high across diagnostic groups, with 77% of PCA participants, 100% of PPA participants, and 89% of bvFTD participants attending ≥75% of sessions. Retention was also high for the health resource use measure (PCA: 95%; PPA: 100%; bvFTD: 100%) and for cognition, quality of life, and engagement/independence measures (PCA: 95%; PPA: 100%; bvFTD: 89%).

To date, qualitative interviews have been completed with people with RDs (n=27) and care partners (n=15), with further interviews ongoing. Preliminary qualitative findings suggest benefits in confidence, communication, and social engagement.

Conclusion: 

Adapted virtual CST appears feasible, acceptable, and responsive to unmet care needs in RDs, supporting further evaluation.