Post-diagnostic support for dementia in the UK: mapping access, delivery and gaps in provision

Abstract

Abstract Background Dementia is a progressive condition affecting approximately 982,000 people in the UK, with substantial implications for people living with dementia, carers, and healthcare systems. Effective post-diagnostic support is essential for managing symptoms and maintaining quality of life, yet services remain inconsistent, fragmented, and highly variable across regions, particularly in rural and underserved areas. Cognitive Stimulation Therapy (CST) is the only non-pharmacological intervention recommended by the National Institute for Health and Care Excellence (NICE) to improve cognition, independence and wellbeing in people with dementia. However, a 2020 survey indicated substantial variation in its availability and delivery. Objectives To investigate the availability, delivery, and challenges of post-diagnostic support for dementia in the UK, with a particular emphasis on CST. Methods An online survey with a mix of open and closed questions was conducted between August and December 2024 among healthcare professionals working in NHS Trusts, memory clinics, care-homes, non-profit organisations and dementia services across the UK. The questionnaire collected information on post-diagnostic dementia support, including the availability and delivery of CST, psychological support, staffing, service integration and perceived barriers to service provision. Quantitative data were summarised descriptively, and free-text responses were analysed using descriptive content analysis. Results 129 responses were received from staff across 71 distinct services across the UK, including 45 of the 202 NHS Trusts and third-sector dementia organisations (e.g. the Alzheimer’s Society). All available data, including partial responses, were included in the analysis. Respondents reported variation in the availability of post-diagnostic support across UK dementia services. 65.5% (55/84) reported that their organisation delivered CST. Of those, 58.5% (24/41) reported running only a single CST group programme at a time. Reported waiting times for post-diagnostic support varied widely, with a mean of 13.7 weeks and a range from 2 to 100 weeks. Overall, the findings highlight reported delays in access to post-diagnostic support, variation in the availability of CST, and persistent challenges related to staffing capacity and funding constraints. Conclusion These findings suggest substantial variation in the reported availability and delivery of post-diagnostic support across UK dementia services. There is an urgent need for increased funding, workforce expansion, and clearer national standards for post-diagnostic dementia care to ensure that people living with dementia can access timely, evidence-based support that helps them maintain independence, manage symptoms, and sustain quality of life following diagnosis.