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Rare dementias include conditions such as primary progressive aphasia (PPA), posterior cortical atrophy (PCA), and behavioural variant frontotemporal dementia (bvFTD). These conditions present unique challenges around language and communication (PPA), visual processing and spatial skills (PCA) and changes in personality, behavioural and social functioning (bvFTD). These conditions disproportionately affect younger individuals with a considerable impact on employment, finances and family care commitments.
Existing support systems and interventions are typically designed for common forms of dementia, such as Alzheimer’s disease, and often lack the flexibility or specificity required to effectively address the distinct support needs of those with rare dementias. In addition, the low prevalence and wide geographical dispersion of rare dementias often limit access to local, in-person specialist services. This highlights the need for online support options.
In response to this, CST has been adapted in both content and virtual delivery to meet the specific needs of individuals with PPA, PCA and bvFTD. This adaptation was developed through collaborative engagement with stakeholders, including individuals with these conditions, caregivers, rare dementia specialists and patient and public involvement leads.
A feasibility study is currently underway to evaluate the adapted virtual CST intervention for individuals with PPA, PCA, and bvFTD. The study aims to recruit 60 participants (20 per diagnosis) and uses a mixed-methods, single-arm pre-post design. The intervention will consist of a 7-week virtual CST programme, delivered through 14 group sessions held twice weekly via video conferencing software. Baseline and follow-up outcome measures will assess cognition, quality of life, and engagement and independence in dementia. Data on demographics, medication use, access to psychological interventions and healthcare resource utilisation will be collected at baseline and follow-up, along with semi-structured interviews with participants, care partners and virtual CST group facilitators.