Background:

People living with rarer dementias face considerable difficulty accessing tailored information, advice and peer and professional support. Online meeting platforms offer a critical opportunity to connect with others with shared lived experiences even if geographically dispersed, particularly during the COVID-19 pandemic.

Objective:

Our objective was to develop facilitated videoconferencing support groups (VSGs) tailored to people living with or caring for someone with familial or sporadic frontotemporal dementia (fFTD or FTD) or young onset Alzheimer’s disease (fAD or YOAD) , primary progressive aphasia (PPA), posterior cortical atrophy (PCA) or Lewy body dementia (LBD). This paper describes the development, co-production, field-testing, and the evaluation plan for these groups.

Methods:

We describe a three-phase approach to development. First, information and knowledge were gathered as part of a co-production process with members of the Rare Dementia Support (RDS) service. This information, together with literature searches and consultation with experts by experience, clinicians and academics, shaped the design of the VSGs and session themes. Second, field testing involved 154 RDS members (people living with dementia and carers) participating in two rounds of facilitated sessions across 7 themes (health and social care professionals, advance care planning, independence and identity, grief and loss, empowering your identity, couples, hope and dementia). Third, a detailed evaluation plan for future rounds of VSGs was developed.

Results:

The development of the small groups programme yielded content and structure for 9 themed VSGs (the 7 piloted themes plus a later stages programme and creativity club for implementation in round 3 and beyond) to be delivered over 4-8 sessions. The evaluation plan incorporated a range of quantitative (attendance, demographics and geography; pre-/post- wellbeing ratings and surveys; psycholinguistic analysis of conversation; facial emotion recognition; facilitator ratings; economic analysis of programme delivery) and qualitative (content and thematic analysis) approaches. Pilot data from round 2 groups on the pre-/post-three word surveys indicated an increase in the emotional valence of words selected after sessions.

Conclusions:

The involvement of people with lived experience of a rare dementia was critical to the design, development and delivery of the small virtual support group programme, and evaluation of this programme will yield convergent data about the impact of tailored support delivered to geographically dispersed communities.