How we developed a multidisciplinary screening project for people with Down’s syndrome given the increased prevalence of early onset dementia

Abstract

Accessible summary • People with Down's syndrome are more likely to develop dementia than the general population and at a younger age. • Researchers and clinicians who have looked into this have said that all people with Down's syndrome should be assessed once in early adulthood so that people know what their skill level is in case changes occur later on. • This article talks about how we did this in Manchester. Summary There has been much research that has identified an increased prevalence of Dementia in adults with Down’s syndrome when compared with the general population. Neuropathological changes associated with Alzheimer’s dementia in the brain have been found in most people with Down’s syndrome who die over the age of 35 years. Given the limitations of many assessments for dementia in relation to people with Down’s syndrome for a single completion, it has been recommended that all people with Down’s syndrome are assessed at least once in early adulthood in order that they have their own baseline which can be compared with in the future if changes in skills and abilities occur. The authors have had many requests from other services enquiring about this project and how a similar initiative could be set up in their area which is what has led us to write this article. Therefore, this article focuses on the way the Manchester Learning Disability Partnership approached screening 135 adults with Down’s syndrome and details the assessments used, practical considerations, what has been learned and future service implications.