Exploring care pathways for individuals diagnosed with Young Onset Dementia

Background & Strength of Scientific Evidence:
Approximately 40 000 people in the UK (5% of people living with dementia) have been diagnosed with young onset dementia (YOD) (1,2). Young onset refers to people who are under the age of 65 when diagnosed. Their needs are significantly different from those experienced by people in the later stages of dementia (3-4), and generic dementia services are not always suitable (5). A preliminary scoping of the literature identified only a few studies that specifically addressed service provision for this population. The James Lind Alliance’s and the Alzheimer’s Society’s research priorities have identified the need for research on how to maintain people with YOD as independent as they can be for as long as they can be.
Aim: Through a cross CLAHRC collaboration (EoE and York-Humber) develop a detailed understanding of what age-appropriate services and/or care packages/services/pathways exist for people diagnosed with YOD and their families/carers, and how effectiveness is defined and measured at different stages of the disease trajectory.