Young onset and rarer forms

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

  • A Young Onset Dementia Admiral Nurse post has been funded with thanks to Dementia UK and two localities (Heywood, Middleton and Rochdale and Wigan) with support from Dementia United. The post will be hosted by the Cerebral Function Unit, Northern Care Alliance for Greater Manchester.
  • Resources from national partners, such as Young Dementia Network guidance for GPs, have been included within our Greater Manchester Dementia Care Pathway
  • Diagnosing young onset and rare dementia webinar on 16thDecember 2020 – case studies presented and discussed by Dr Matthew Jones (consultant neurologist) and Dr Jennifer Thompson (neuropsychologist) from the Cerebral Function Unit. 70 people attended from Greater Manchester secondary care mental health services with 100% of attendees who provided feedback (38) feeling more aware of the issues pertinent to diagnosing young onset and rare dementia.
  • Webinar on post diagnosis support of those with young onset / rare dementia on 2nd February 2021.  Prof Jan Oyebode spoke about the Angela Project, Ronnie spoke about his personal experience of living with young onset dementia and we hosted a panel between different Salford, Manchester and Stockport post diagnostic services as well as Oldham commissioning. The feedback suggested that 70% of attendees currently thought support for this audience was inadequate. It also highlighted that the main thing that attendees took away was the desire to network and learn more about young onset and rare dementia services available across GM to facilitate shared learning, joined up practice and better support.
  • Pennine Care, with our support, have created some fantastic awareness films on rare dementias, including Frontotemporal Dementia (FTD) and Primary Progressive Aphasia (PPA) that are available on our resources pageunder “Young Onset and Rare Dementia”. The FTD films are good for formal and informal carers to understand what it’s like to live with and care for someone with FTD and contain practical tips and advice. The PPA film was created for people who have recently had a diagnosis of PPA and the people that care for them. It provides a summary of the support you can access from Speech and Language Therapy. Alongside this film, an article was produced introducing a toolkit for professionals who work with people with PPA. This article can be found in the March/April 2021 edition of the Journal of Dementia Care. The toolkit has been designed to help professionals working with people with PPA to guide their intervention to ensure all support is relationship-centred, focusing on the person and those around them. The toolkit domains were devised on the current evidence and literature and the practice-based knowledge of the Speech and Language Therapists who contributed
  • Our personal budgets leafletwas co-produced with our task and finish group of multidisciplinary Greater Manchester professionals and carer experts and includes real-life examples where those with young onset and rare dementia have used personal budgets successfully. If someone is eligible for a personal budget after contacting their local council, it can give you more control on how your support is organised and delivered for your needs. This is particularly relevant for those with young onset and rare dementia where more general dementia services may not be age or symptom appropriate.

 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 and we will direct you to the relevant project manager.