What is the Young Dementia Network?

The Young Dementia Network is an online influencing community working collaboratively to improve lives. Launched in 2016 and driven by first-hand expertise and experience, the Network is now hosted by Dementia UK.  

People living with young onset dementia and their families are at its heart. 

Our purpose 

We want to improve the lives of people living with young onset dementia and their families now and create positive change for a better future. 

Our approach 

  • We collaborate with people with lived experience, professionals and organisations  
  • We campaign for improvements in policy, practice and provision  
  • We provide opportunities to increase knowledge and connection amongst people affected and professionals  
  • We create empowering resources for people affected and for professionals 

Our aims 

  • To improve the experience of diagnosis for the person and their family 
  • To increase access to lifelong support for the person and their family 
  • To increase understanding and awareness of young onset dementia 

The Network does not directly provide a support service. You can find sources of young onset dementia support here.   

Our achievements  

We are working collaboratively to build sustainable changes that stand the test of time. Our effort is a ‘work in progress’, with short-term gains becoming stepping stones to a better future. Here is a selection of the Network’s positive work.     

  • Encouraged the adoption of more accurate young onset dementia prevalence figures by key organisations and continue to seek improvements to data accuracy to support service development and improvements 
  • Contributed a young onset dementia perspective to England’s Major Conditions Strategy and to the All-Party Parliamentary Group on Dementia’s reports Raising the Barriers: Tackling regional variations in dementia diagnosis 2023; Workforce Matters: Putting people affected by dementia at the heart of care 2022 and Hidden No More: Dementia and disability 2019; and to the National Health Service England’s RightCare Dementia Scenario 2023  
  • Co-branded Alzheimer’s Research UK’s young onset dementia leaflet and agreed the translation and adaption of our resources by Alzheimer’s Society Canada and by Alzheimer’s Disease International for use in Ukraine and for Ukrainian refugees 
  • Reached out internationally to professionals in the Young Onset Dementia Knowledge Centre, Netherlands to share knowledge and identify opportunities to collaborate   
  • Contributed to the Royal College of Psychiatry’s young onset dementia in mental health services report 2018 
  • Encouraged the inclusion of a requirement to have a named young onset lead, a young onset referral pathway and access to specialist advice within the Memory Service Accreditation Programme standards from 2016 onwards 

Check out our activities, newsletters, webinars and resources on this website.