Care pathways for individuals diagnosed with Young Onset Dementia (YoD)

27/11/2018 Press release: Young people with dementia need new approaches to care

Research conducted by academics at the University of Hertfordshire outlines new approaches to care for people diagnosed with young onset dementia.

There are currently around 42,000 people under the age of 65 living with young onset dementia (YOD) in the UK. Their support needs are different to the care required by older people. However, little is known about what should be put in place to provide age-appropriate care.

In order to understand how services could be improved, academics from the University of Hertfordshire ran discussion groups to explore perceived service priorities with people with (or with experience of) YOD. They also conducted a literature review, focusing on services available for people affected by YOD. Of the 31 discussants, 11 had a diagnosis of YOD and 20 were spousal caregivers. Academics also interviewed representatives of service providers.  Findings of this study were published in Dementia: The International Journal of Social Research.

The research found the best way to improve services for younger people with dementia is for people affected by YOD to work closely with service providers to co-design and co-ordinate support that is locally sustainable.

Background: In the UK 5% of people living with dementia have been diagnosed with young onset dementia (YoD). This refers to people who are under the age of 65 when diagnosed. Reportedly, their needs are significantly different from those of people living with dementia who are older and generic dementia services are not always suitable. As emphasised by recent reviews of the literature on Young Onset Dementia (YoD) by the Alzheimer’s Society and by the White House Conference on Ageing, services for people living with YoD need to be tailored to individuals’ needs due to the variability in their disease trajectory. However, there does not appear to be sufficient evidence in the literature to inform service design and delivery for this group.


  • To conduct a review of reviews and a scoping of grey literature to establish what is known about services for people living with YoD, and to review the scope and effectiveness of current interventions
  • To involve PPI representatives diagnosed with young onset dementia from the beginning of the study to inform the systematic review of literature
  • To undertake interviews with service providers in two CLAHRC regions. These questionnaires will also be informed by people diagnosed with young-onset dementia, not as subjects to be interviewed, but in their role as PPI representatives.


A review of recent reviews of the literature on young onset dementia

Scoping of grey literature and online search on service provision published by NHS organisations and charities that target people living with YoD

Meeting with PPI representatives who were diagnosed with YoD in the two study sites.  These discussions will inform and provide the focus for the systematic review of the literature.

Systematic search of literature of interventions designed to support people living with YoD. 

Interviews with service providers in the two study sites.

This is a Development Grant funded by CLAHRC EoE.  

Project timeframe: 1st April 2016 to 31st March 2017