People with an Intellectual Disability (ID) are at greater risk of developing dementia than the general population. In particular, those with Down syndrome (DS) are the world’s largest group with a genetic risk for Alzheimer’s disease (AD), given over-expression of the amyloid precursor protein (APP) gene located on chromosome 21.
Despite this high risk, services, both in the general population and ID specific services are ill prepared to provide post-diagnostic support to people with an ID and dementia and their carers, meaning unequal and inadequate access to supports for many across the country. There is currently little systematic research to guide development of post-diagnostic supports for people with ID. With its recent establishment, the National Intellectual Disability Memory Service (NIDMS) in Ireland will offer an accessible systematic approach to diagnosis, resulting in an increased need for post-diagnostic supports for people with ID.
The aim of the study, therefore, is to develop accessible best practice guidelines for post-diagnostic dementia supports for people with an intellectual disability in Ireland. This will be achieved through:
Identifying current guidelines/recommendations on post-diagnostic dementia care nationally and internationally for the general population and for people with ID.
Understanding the current landscape of post-diagnostic dementia support for people with an intellectual disability in Ireland.
Understanding the lived experience of accessing and using post-diagnostic dementia support services for people with ID/DS and their families and desires for post-diagnostic services.
Identifying gold standard approaches/guidelines to post diagnostic dementia care from specialist ID service providers.
The resulting guidelines will identify needed adjustments, and make recommendations for all services on how best to provide post-diagnostic dementia supports to people with ID and their families/carers.
