Better living with non‐memory led dementia: results from a pilot randomised clinical trial of an online training programme for carers of people with PCA, PPA and bvFTD

Abstract

AbstractBackgroundDementias starting with symptoms other than memory are low prevalent. Educational and training resources for caregivers of people living with these conditions are scarce and difficult to access. The aim of this trial is to test the feasibility of an online training program for carers of people with three non‐memory led dementias: Posterior Cortical Atrophy (PCA), Primary Progressive Aphasia (PPA) and behavioural variant FTD (bvFTD). The trial design is a randomised feasibility study.MethodSetting: Community. Participants were recruited from the organisation Rare Dementia Support (RDS). Participants: Carers of people with PCA, PPA and bvFTDIntervention: The experimental group was given access to an eight‐week online program consisting of 6 digital manuals addressing practical strategies to better support people living with PCA, PPA or bvFTD (depending on diagnosis of the care recipient). The control group was directed to RDS’s existing website (TAU).Outcome measures: Feasibility of recruitment, measurement tools (clinical outcomes, see Table 1) and acceptability. Measures were collected at baseline, immediate post intervention (8 weeks post‐randomisation) and 3 months post‐randomisation.Randomization: Allocation ratio was 2:1 (intervention: control) stratified by diagnosis carried out by a central computer system. Participants were unblinded to intervention. All measures were self‐reported online by the participants.ResultNumbers randomized: 31 participants were recruited. 30 participants were randomized (1/31 did not complete baseline) (21 to intervention, 9 to control group). Trial status: closed.Numbers analysed: 30 participants for intention to treat analysis (3 dropped out).Outcomes: Feasibility of recruitment (see Figure 1 Flowchart) is 40% (31 people consented/78 approached). Retention rate is 87%. The proportion of eligible participants who agree to participate is 97% (30/31).Assessment of feasibility of measurement tools (proposed clinical outcomes) shows 96% response rates at 8 weeks (29/30) and 90% (27/30) at 3 months. Acceptability: 100% of participants agreed to be randomised. Intervention coherence: 28% (6/21) participants interacted with facilitator during the intervention. Follow‐up qualitative interviews were conducted to gain a better understanding of how to improve intervention coherence.ConclusionThe trialled intervention shows excellent feasibility of recruitment, retention and measurement tools. Enhancement of intervention coherence is required.