A systematic review of the provision and efficacy of patient and carer information and support (PCIS) interventions for patients with dementia and their informal carers

BACKGROUND: The NHS dementia strategy identifies patient and carer information and support (PCIS) as a core component of gold-standard dementia care. This is the first systematic review of PCIS, performed to analyse the literature and evidence for these interventions. AIMS: To systematically review literature evaluating the effectiveness of the provision of PCIS for people with dementia and their informal carers, in inpatient and outpatient settings. METHODS: Searches of four online biomedical databases, accessed in September 2018. Studies were selected if they were: relating to people with dementia or their informal carers, based in inpatient or outpatient settings, published in English-language peer-reviewed journals no earlier than the year 2000 and assessed dementia-related information or social support interventions, by measuring qualitative or quantitative carer or patient-reported outcomes. Standardised data extraction and quality appraisal forms were used. RESULTS: 7 of 43 full-text papers analysed were eligible for analysis. 3 papers were different arms of one original study. Trends were present in the quantitative results towards reduced patient and carer depression and anxiety and the themes in the qualitative analysis were in favour of the intervention. CONCLUSIONS: The studies analysed were too heterogeneous in design, population and outcomes measured to make a conclusive opinion about the efficacy of these interventions. It is surprising that for such a common condition, a gold-standard evidence-based intervention and standardised delivery for provision of PCIS for people living with dementia in the UK does not exist. Further research is therefore vital. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1007/s40520-019-01428-8) contains supplementary material, which is available to authorized users.