Service users’ involvement in the development of individual Cognitive Stimulation Therapy (iCST) for dementia: a qualitative study

BACKGROUND: Individual Cognitive Stimulation Therapy (iCST) is a one to one, carer led psychosocial intervention for people with dementia, adapted from group Cognitive Stimulation Therapy (CST). It is increasingly recognised that involving service users in research is key to developing interventions and treatments that successfully address their needs. This study describes the contribution of people with dementia and carers during the development phase of the intervention and materials. METHODS: Twenty-eight people with dementia and 24 carers were consulted in a series of six focus groups and 10 interviews. The purpose of this study was to gain insight into perceptions of mental stimulation from the point of view of carers and people with dementia, to ensure the materials are easy to use, clear, and appropriately tailored to the needs of people with dementia and their carers, and to assess the feasibility of the intervention. RESULTS: The importance of mental stimulation was emphasized by carers and people with dementia. People with dementia saw activities as a way of ‘keeping up to date’ and spending time in a meaningful way. Carers reported benefits such as improved quality of life, mood and memory. The concept of iCST was well received, and both carers and people with dementia responded positively to the first drafts of materials. Feasibility issues, such as finding time to do sessions, were identified. CONCLUSION: The feedback from the focus groups and interviews will be used to further develop and refine the iCST programme materials in preparation for a field testing phase prior to a large scale randomized controlled trial (RCT). TRIAL REGISTRATION: ISRCTN65945963. Date of registration: 05/05/2010.