Young onset dementia pathway

An outline of our recommendations

The young onset dementia pathway brings together the experience of people affected by young onset dementia and the people who work with and support them.  It shows that the impact of dementia can be very different depending on your stage of life and that because of this, services must be tailored to meet those needs.  

Currently, this is rarely the case and this means that younger people can take twice as long to be diagnosed than an older person.

Once they receive this diagnosis they are often left with no appropriate support and no one with the specialist knowledge to help them.

From first contact with a GP to end of life care, that journey can be very different for a younger person.  They are likely to be in work, have a mortgage and dependent children.  They may have a rarer form of dementia which means they are part of an even smaller minority.  A dementia diagnosis is always devastating.  But for a younger person, that diagnosis means that life changes beyond recognition.

Together with people with young onset dementia, family members and professionals we have written a set of recommendations which are designed to meet those different needs.  These recommendations will guide policy makers, commissioners and practitioners in designing and delivering services.  Most importantly, we hope they will empower younger people with dementia and their families to demand the services to meet their needs.

Our recommendations include

• Positive contact with a GP which reduces the time taken to receive the correct diagnosis
• GPs to have an awareness of young onset dementia and the variety of symptoms with which it can present.  This could improve recognition by GPs of key symptoms that may indicate a referral to specialist services is required
• clear referral routes from the GP to specialist diagnostic services
• A clear and collaborative diagnostic process which is young onset specific
  • ensure a defined local care pathway for younger people with possible cognitive impairment
  • provide access to a specialist with expertise in the diagnosis of young onset and rare dementia, to improve standards of assessment and diagnostic accuracy
• Specialist support and information which meets our changing needs
  • a key worker who has specialist knowledge, training and experience of young onset dementia and its impact on the person with the diagnosis and their family
• Living with young onset dementia
  • for the key worker, clinicians, social services and charitable organisations to work closely together to provide a comprehensive service for the person with young onset and their families
  • access to age appropriate and meaningful activities which enable younger people and their families to remain engaged in their communities, retain and develop relationships and social connectedness. Age-appropriate means that the content, location and timings of activities are designed to be beneficial and accessible for younger people
  • advice which enables the person to plan for the end of their life
  • access to age appropriate and local respite and long term care, based in their own home or in residential care depending on the person’s wishes and needs