The Young Dementia Network aims to bring about improvements for people affected by young onset dementia.  We are seeking national and high-level service, policy and practice changes - these will take a while.  Some changes are small, tangible and intended to help now.  Here are a few of our achievements pre-Covid-19.


  •  Membership grows to over 2900.
  • Young onset dementia ID cards are in demand across the country and just on initial roll out, over 2300 are mailed out. 
  • The Personal checklist, endorsed by Alzheimer's Research UK, Dementia UK and YoungDementia UK, serves as an aide-memoire to record symptoms and concerns when attending a GP appointment also proves popular with over 6300 copies downloaded.
  • Young Onset Dementia Guidance to prompt timely advice and boost the confidence of non-specialist dementia advisors and supporters compiled by people living with young onset dementia  
  • In collaboration with The Angela Project research team, Good Practice in Young Onset Dementia is published and although Covid-19 has interrupted its promotion to commissioners, service developers and providers, this offers evidenced findings to improve diagnosis and support 


  • Having been pivotal to the inclusion of young onset within the government’s Dementia Challenge, the Network is leading on the young onset dementia Actions – see 2016!
  • Awareness was raised through the creation and distribution of a package of young onset dementia material for GPs and Health Centres.
  • Our second annual research event brought together people affected by young onset dementia, senior and junior researchers to identify optimal research topics – as a result of this, the DEFIN-YD project was funded by the Wellcome Trust.
  • This year we piloted material to support individuals and families.


  • Our decision-making guide for GPs, endorsed by the Royal College of General Practitioners, was sent to 12,000 GP surgeries across the UK.
  • The first Young Dementia Network Research Event was held in June. 
  • We connected 30 Researchers and 34 Occupational Therapists within the Network. 
  • Presented at Young Dementia 2018, a conference held in Birmingham hosted by Journal of Dementia Care and YoungDementia UK.



  • Launched the Young Dementia Network.
  • Worked with the Memory Service National Accreditation Scheme to make sure their latest standards include the specific needs of younger people with dementia.
  • Created a set of recommendations about how services should meet the needs of younger people and their families.  Read more here
  • Worked with the National Dementia Action Alliance on their call to action on post-diagnostic support, helping them to include younger people with dementia. 
  • Presented at Young Dementia 2016, a conference held in Birmingham hosted by Journal of Dementia Care and YoungDementia UK.
  • Contributed to the Dementia Programme Board which oversees the implementation of the Government’s dementia strategy.  Our Steering Group members who sit on this board ensure that the voices of younger people with dementia and their family members are heard. 

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