Young onset and rarer forms of dementia

Our aims

  • Scope out and review current services and resources. As part of this we will work with national partners (eg Young Dementia Network, Lewy Body Society, Posterior Cortical Atrophy Support Group) to ensure that best practice and guidance for clinicians is included
  • Establish a Greater Manchester wide group to steer and drive the priorities from across all localities, including the Cerebral Function Unit and the Admiral nurse for young onset dementia
  • Work with localities to review and refresh the Greater Manchester Approach to Young Onset Dementia and Rarer Forms. This approach describes recommendations that would enhance a person-centred pathway for those suspected of or diagnosed with young onset dementia or a rarer form of dementia. After this review we plan to work with localities to consider taking forward any actions relevant for their locality dementia strategies.
  • Collate and review evidence based/public facing resources; and ensure that all information and resources are available within our Greater Manchester Dementia Care Pathway and shared widely

Why this matters

We know that people with young onset dementia have specific needs related to atypical forms of dementia as well as what stage of life they are at when they are diagnosed (working, with a young family, may be caring for an older relative, social activity).

55% of those currently aged between 65 to 69 were diagnosed under the age of 65 (Carter 2022). We don’t have definitive data on the numbers of people with young onset dementia across Greater Manchester. This lack of data reflects a national trend.

People with young onset and/or a rarer form of dementia diagnoses benefit from a multi-disciplinary team approach to both their diagnosis and their post diagnostic support. This requires collaboration across specialities. In Greater Manchester, we do have a specialist diagnostic centre at the Salford Cerebral Function Unit. However, referrals from across localities into this service vary.

There are specialist groups across Greater Manchester offering post diagnostic support for people with young onset dementia. These aren’t available in every locality and, due to the smaller numbers of people who have young onset dementia, individually these may not be very well attended. There are also limited offers of respite, or carer support for people with young onset and rarer forms of dementia.

What we’ve achieved so far

You can find more information about our previous work here 

What’s next?

You can find out more about our Lived Experience Group here

You can find out more about our Dementia Carers Expert Reference Group here

If you would like further information or to get involved with this project, please email gmhscp.dementiaunited@nhs.net and we will direct you to the relevant project manager.