The need for change

The current situation 

In the UK very few people with young onset dementia and their families experience a high standard of diagnosis and support throughout their lives. Very few, as the condition progresses, can rely on care that works well for them and their family at home and if an alternative is needed, appropriate care homes are very scarce. 

There is inequitable variation in the provision of services for people with young onset dementia which needs to be challenged. People affected by young onset dementia tell us they need: 

Before and at the point of diagnosis  

• Early recognition of the signs and symptoms suggestive of dementia 
• Accessible support during assessment and diagnosis 
• Accurate and timely diagnosis communicated clearly with hope 
• Specialist tailored information at the time of diagnosis  
• Health and social care professionals who understand their condition 
• Access to genetic counselling and testing if appropriate 
• Identification of a professional who specialises in young onset dementia to be their point of contact for support to adjust to the diagnosis

Adapting to life with young onset dementia  

• Continuing access to a young onset dementia specialist to develop well-co-ordinated a support plan together 
• Early and continuing connection with peers in similar situation 
• Access to a dementia helpline including outside of working hours 
• Emotional support and relationship counselling 
• Support around employment and finance issues 
• Age-appropriate guidance and support to be active and independent 
• Age-appropriate meaningful occupation and activities 
• Support to retain a life beyond caring 
• An enabling community and environment which is non-stigmatising and non-discriminatory  

Urgent need for change   

Many aspects of living with young onset dementia need to be improved. Some of the solutions are simple, others more complex to embed. The Network and its collaborators are seeking equity for all irrespective of postcode.  

Our current focus is on improving the experience of diagnosis. We do recognise that there is no clear demarcation of one stage to another in terms of living with young onset. We needed to start somewhere!    

Diagnosis challenges  

• It is estimated that only 55% of people living with young onset dementia have a diagnosis. Without a correct diagnosis people are deprived of clinical treatment, support and information and the ability to live fully in the present and plan for their future while they are still able 
• Recognition of young onset dementia symptoms amongst Primary Care is relatively low with misdiagnosis common 
• The average time to diagnosis is over four years in younger people, twice as long as for people aged over 65 
• Over 70% of people may have up to five different consultations before a diagnosis is made, nearly 10% between five to ten consultations  
• Wide variability exists in access to specialist expertise in assessing young onset dementia and determining its causes, including access to diagnostic tests and genetic testing  
• There is inadequate recording of dementia subtypes on individual’s health notes which means that reporting at local and national level understates prevalence levels  
• This results in poor levels of age-appropriate support both clinically and within the community, and so subjecting younger people with dementia to a form of age discrimination and unequal treatment  
• The aftermath of Covid-19 has exacerbated these challenges.  The level of provision during and after diagnosis has worsened with young onset services reducing, or disappearing completely 

What we are asking for  

• Extend the existing dementia diagnosis target rate of at least two thirds to include all those under 65 inclusive of the type of dementia 
• Every person with suspected young onset dementia should have access to a Young Onset Dementia Service or Pathway to provide timely and accurate diagnosis, immediate post-diagnostic support and a coordinated support plan 
• People with suspected young onset dementia should have access to a clinician with young onset dementia expertise in their local area 
• All local dementia service planners and providers should establish Lived Experience Forums to ensure those affected help design appropriate services