Including best practices and the voices of experience in developing post-diagnostic dementia support guidelines for people with an intellectual disability

Increases in life expectancy in people with intellectual disability have led to aging-related discoveries. These increases in life expectancy also have implications for services planning and care. For example, it is now known that people with Down syndrome are the world’s largest population with a genetic risk for Alzheimer’s disease. However, differences in diagnostic and care needs often mean that the care people with intellectual disability receive, needs dramatic improvement. This research will increase our understanding of existing post-diagnostic dementia supports with people with intellectual disability, and what can be done to improve these services.