Improving services for people with learning disabilities and dementia: Findings from a service evaluation exploring the perspectives of health and social care professionals

Abstract

Accessible summary Dementia is an illness caused by damage to a person's brain. People with learning disabilities, especially people with Down's Syndrome, are more likely to get dementia, and when they are younger. We talked to people working in community learning disability teams to find out what they thought about services and support for people with learning disabilities and dementia and carers. Screening and assessments mean that people get diagnosis and support more quickly and other problems are picked up. More appropriate housing and support is needed so people can stay at home for longer. Research needs to look at the best ways to support people with learning disabilities and dementia. It is important to find ways to involve people with learning disabilities and dementia and carers in meetings about their support and future research. AbstractBackgroundDementia prevalence rates are higher amongst people with learning disabilities than the general population. People with Down's syndrome are at even greater risk of developing dementia and of developing dementia at an earlier age. This study, conducted as part of a wider service evaluation, explored community learning disability team perspectives on screening, pathways, training, information and supports developed to improve services for people with learning disabilities and dementia.MethodsA focus group was held with health and social care professionals working in community learning disability services. Thematic analysis was used to analyse the data.ResultsThe dementia screening, pathways and processes had become embedded in practice, leading to a common framework, an efficient, multidisciplinary, proactive approach, earlier detection and diagnosis of dementia and identification of other health needs and issues. This avoided crisis situations supporting people to remain at home longer. Training and information were felt to improve care quality and reduce caregiver anxiety. People with learning disabilities and caregivers were involved to varying extents. External influences impacting on support included the availability, appropriateness, cost and effectiveness of different models of service provision.ConclusionsService developments have been made as a result of the findings which suggest that dementia pathways and supports improve service provision and outcomes for people with learning disabilities. It is important to develop the evidence base on the effectiveness of different service models for people with learning disabilities and dementia. Future studies need to gather views of people with learning disabilities and carers.