The Young Dementia Network is a growing community of over 600 people living with young onset dementia, their family and friends, and professionals who work in dementia and social care. Together we aim to improve understanding of young onset dementia, provide opportunities to connect and learn from each other as well as influence how young onset services are delivered across the UK. Managed by YoungDementia UK, the Network is the first of its kind to bring people together to share their experiences and knowledge in order to improve support for all people affected by young onset dementia.
In one of its first major projects the Network has worked with GPs to create a tool to raise awareness of young onset dementia and the wide range of issues someone may experience which prompts a visit to their doctor. Younger people are more likely to have a rarer form of dementia and many people are misdiagnosed with depression, anxiety / stress, marital issues, menopause or personality disorder. They are much less likely to have memory problems, instead problems caused by personality changes, balance, vision, behaviour and language may be the first symptoms.
A tool such as this is needed as it takes on average 4.5 years for a younger person to receive a diagnosis, twice as long as it does an older person. There is a wealth of evidence about common delays to diagnosis and the impact this has on people and their families, and for younger people this can often include marriage breakdown, unemployment and losing a driving licence before a diagnosis is received. However, once people have a diagnosis it is often seen as the essential first step towards accessing treatment, support, information and advice to help adjust to life with dementia.
Recognising this need, the Network engaged with young onset and rare dementia support groups to ensure the views of people living with dementia and their families were represented. They also worked with GPs and clinicians who specialise in diagnosing rare and atypical dementias.
The pilot decision-making tool is now available and the Network hopes to engage GPs across the country to use and review the tool. They also welcome feedback from people living with young onset dementia, their families and other health and social care professionals including home care specialists. After a period of testing and review, the decision-making tool will be finalised and copies made available to GPs across the UK. The Network hopes it will increase GPs awareness of young onset dementia, its prevalence and symptoms and speed up the referral and diagnosis process for people aged under 65.