The development and evaluation of individual Cognitive Stimulation Therapy (iCST) for people with dementia

Background: Cognitive Stimulation Therapy (CST) can improve cognition and quality of life (QoL) for people with dementia. However, previously this has only been delivered in a group format. Aim: To develop and evaluate the effectiveness of a home-based, carer-led individual CST (iCST) programme. Methods: The trial followed the Medical Research Council (MRC) framework. The development phase included; assessment of studies of home based cognitive stimulation, consultation with carers, people with dementia and healthcare professionals on the adaption of the CST and maintenance CST (maintenance CST) programmes, focus groups (n=32), ten interviews, a period of field-testing (n=22), an online survey and a consensus conference. A multi-centre, single-blind, pragmatic, randomised controlled trial (RCT) was conducted. In total, 356 people with mild to moderate dementia and their carers were recruited. Dyads were randomly assigned into the iCST arm (three, 30 minute sessions per week for 25 weeks plus support) or treatment as usual (TAU) control. The iCST training DVD was developed as part of the trial. Results: In the development phase the concept of iCST was well received, and both carers and people with dementia responded positively to the first drafts of materials. Anticipated issues, such as finding time to do sessions and suitability of the carer to deliver sessions were identified in the focus groups and interviews. The field-testing phase demonstrated that implementation of the iCST intervention was feasible. However, the majority of dyads completed fewer than three sessions per week. Identified barriers to participation included, lack of time, illness, and motivation. The training and support package appeared to be suitable as carers were able to deliver the intervention without intensive support. Two drafts of the materials were produced before a final version ready for use in the main RCT. Of the 180 iCST dyads, 134 (74%) were included in the intention to treat (ITT) analysis. There were 178 TAU dyads, of which 139 (78%) were available for analysis. At follow-up 2 (FU2) there were no significant differences between the iCST and TAU groups in the primary outcomes of cognition (Alzheimer’s Disease Assessment Scale - cognitive [ADAS-cog], SMD = -0·55, 95% CI -2·00,0·90; p=0·45) and self-reported QoL (Quality of Life Alzheimer’s Disease [QOL-AD], SMD = -0·02, 95% CI -1·22,0·82; p= 0·97). People with dementia receiving iCST rated the relationship with their carer more positively (SMD = 1·77, 95% CI 0·26,3·28; p= 0·02). No other secondary outcomes were significant. Conclusions: The rigorous development of the intervention was beneficial as the feasibility of the intervention was explored both in theory and practice. There was no evidence of iCST benefitting either cognition or QoL for the person with dementia. However, it did improve the relationship with the carer. Future work should investigate delivery of iCST by paid carers or professionals and developing the intervention for a computer platform