Service users’ involvement in the development of a maintenance cognitive stimulation therapy (CST) programme: a comparison of the views of people with dementia, staff and family carers

This study reports on the process of developing a maintenance programme manual following the Medical Research Council guidelines representing the ‘phase I’ or modelling. This study uses an inductive thematic analysis approach to examine user perceptions on the maintenance cognitive stimulation therapy (CST) programme. Three focus groups were carried out with people with dementia, three with staff, and three with family carers of people with dementia. In total 17 people with dementia, 13 staff and 18 family carers took part in separate focus groups. The main findings from the user focus clearly supports the recent draft NICE guidelines on dementia (NICE‐SCIE, 2006) that states that all people with mild/moderate dementia should be ‘given the opportunity to participate in a structured group of cognitive stimulation programme’. People with dementia highly valued the opportunity to take part in a mental stimulating group programme and found it vital in keeping them healthy and active. Most family carers and staff were very positive but expressed concerns about the effectiveness of this type of programme and gave real life examples where the idea of ‘use it or lose it’ did not apply. Results from the focus groups will be used in order to produce a new version of the maintenance CST draft manual and this will be evaluated in a large randomized controlled trial (RCT).