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

East of EnglandMental Health
Start Date: 1 Apr 2016 End Date: 31 Mar 2017

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

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, which is why generic dementia services are not suitable. As emphasised by recent reviews of the literature, services for people living with YoD need to be tailored to individuals’ needs due to the variability in their disease trajectory. Interventions that were perceived to be helpful were activity programmes, support groups, and services that provided information and education. However, interventions are often delivered ad hoc or as pilot projects. Whilst literature has addressed support needs, there is little information on service design and delivery for this group.

Aims

  • To explore current service provision for people diagnosed with young onset dementia
  • To involve PPI representatives diagnosed with young onset dementia from the beginning of the study to inform the systematic review of literature on service provision
  • To undertake interviews with service providers in two CLAHRC regions. Questionnaires for service providers will be informed by people diagnosed with young-onset dementia in their role as PPI representatives

Methods

  1. A review of recent reviews of the literature on young onset dementia
  2. Scoping of grey literature and online search on service provision published by NHS organisations and charities that target people living with YoD
  3. Meeting with PPI representatives who were diagnosed with YoD and their caregivers in the two study sites. These discussions will inform and provide the focus for the systematic review of the literature.
  4. Systematic search of literature of interventions designed to support people living with YoD
  5. Interviews with service providers in the two study sites.
Contact 
Dr Andrea Mayhofer
a.mayrhofer@herts.ac.uk