Understanding dementia from the perspective of people with a learning disability: preferences for the disclosure of dementia and care planning.

Background: Whilst it is known that people with learning disabilities are at increased risk of developing dementia, there is a paucity of research which focuses on this from the perspective of individuals with learning disabilities. Literature review: A literature review was conducted to explore people with learning disabilities views about ageing, which revealed both positive and negative beliefs. However, a rapid review, focusing on dementia highlighted negative attitudes, stemming from its association with decline and loss of independence. Aim and method: The study aims were to explore people with learning disabilities’ understanding of dementia and their capacity to engage in discussions relating to dementia, the perceived dis/advantages of being told the diagnosis of dementia and their preferences for future dementia care planning. The study used a three-phase approach, conducted with 15 participants. This consisted of individual interviews, provision of psychoeducation on dementia and then the running of two focus groups. Data was analysed using reflexive thematic analysis. Results: From the individual interviews, three themes emerged, based on whether participants had prior knowledge of dementia or not. Those without knowledge were more negative about the ageing process. From the focus groups, four themes emerged which emphasised dementia as a time of loss, the impact on families and carers, for dementia care to be compassionate and provide support to others in the person’s support system. Conclusion and implications: The findings showed that people with learning disabilities were able to actively engage in discussing ageing and dementia, despite these being sensitive and abstract topics. This study is unique because it captures the perspectives of people with learning disabilities. The findings provide concrete suggestions for enhancing dementia care for this group. The provision of support for caregivers and the dissemination of accessible dementia information are two such examples.