Our achievements

The Young Dementia Network is gaining momentum and is making progress since its 2016 launch. Ever growing, we have around 4,500 members including people living with young onset dementia, family members and friends and a wide range of professionals and people with an interest in the condition.   

Our dedicated membership is actively working to achieve tangible improvements over the longer term. Hence, much of our activity is a ‘work in progress’, with shorter term gains becoming stepping stones to the future as well as helping people now. 

Here is a selection of the Network’s positive work so far. In the past year we:    

• Encouraged, with success, the adoption of more accurate young onset dementia prevalence figures by national dementia organisations and continue to seek improvements to prevalence coding and recording
• Contributed a young onset dementia perspective to the national dementia strategy (not yet published); the All-Party Parliamentary Group on Dementia’s ‘Workforce matters‘ publication and the latest edition of the Memory Service National Accreditation Programme standards
• Initiated policy campaign plans to improve the experience of young onset dementia diagnosis in England
• Launched a webinar programme for professionals addressing different aspects of the diagnosis experience and process which is attracting several hundred attendees
• Shared our key resources to improve practice in young onset dementia diagnosis and support nationally
  • NEW Supporting implementation of the NICE guideline for young onset dementia 
  • the Good practice in young onset dementia guide
  • the Young onset dementia care pathway
• Created and promoted evidence-based, practical resources for people affected by young onset and health care professionals to improve the experience of the person and family during the diagnosis process
• Welcomed Alzheimer’s Research UK’s invitation to co-brand their latest 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
• Increased the topics, including studies on diagnosis and prevalence, in the research log enabling better access to young onset dementia research
• Continued actively supporting young onset dementia research, including DEFIN-YD 2019-2022 which engages people with young onset dementia in influencing research priorities
• Reached out internationally to professionals in the Young Onset Dementia Knowledge Centre, Netherlands to share knowledge and identify opportunities to collaborate  
• Participated as a member of the One Dementia Voice group of dementia organisations to launch a campaign and resource focusing on a vision of Dementia and Hope
• Informed and connected people via our newsletters, social media and website

Since its launch the Network activity includes:  

Campaigning for change

• Ensured that young onset dementia was included within the government’s Dementia Challenge (2019)
• Contributed to the Royal College of Psychiatry young onset dementia in mental health services report (2018)
  
• Influenced 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 (2016)

Creation of resources

• Created a portfolio of resources for younger people with dementia and their families, health, social care and voluntary sector, service developers and commissioners
  
• Collaboratively produced three educational videos as part of the output of The Angela Project

Involvement in research / increasing knowledge

• hosted research-focused events (2018 and 2019) that resulted in the Wellcome Trust funded DEFIN-YD project (2020-2022) 
  
• established and maintained a research log on the Network website enabling better access to young onset dementia research  been an active partner in The Angela Project  (2016-2019), the largest young onset dementia study of its kind and continues to support the team to create new resources and outputs  

Informing and connecting

• reviewed its strategy, purpose and devised a new three-year plan (2021)   
• created a dedicated website for the Young Dementia Network  (2021)  
• facilitated a programme of monthly tea-time webinars, delivered by Network members from October 2020 to June 2022 
• produced a newsletter sent regularly to all Network members  
• played a key role in young onset dementia conferences in association with the Journal of Dementia Care and presented at other conferences and events