Young onset and rarer forms

Our aims

  1. Host educational webinars on young onset and rare dementia diagnosis and post diagnosis support.
  2. Create awareness films on frontotemporal dementia and primary progressive aphasia
  3. Create personal budgets information leaflet for those with young onset and rare dementia. An application process is required but personal budgets may allow for more tailored support required by someone with a rarer dementia.
  4. Ensure above resources and the Young Dementia UK Guidance are incorporated into the Dementia United Wellbeing plan to allow for more constructive and tailored conversations when reviewing the care plan of those with young onset and rare dementia.
  5. Create “A Greater Manchester Approach to Young Onset and Rare Dementia” paper collating learning from Greater Manchester locality interviews, educational webinars and case studies of patient experience to inform key recommendations to take forward e.g. young onset support groups across Greater Manchester working together to support smaller population of those with this disease.

Why this matters

It is estimated there are over 42,000 people in the UK diagnosed with young onset dementia (a diagnosis received under the age of 65). Having young onset dementia brings unique challenges. For example, diagnosis can be more difficult as a person is a lot more likely to have a rare form of dementia that won’t present as memory loss; it is also more likely to be inherited. We are lucky to have a specialist diagnostic centre at the Salford Cerebral Function Unit however referrals from across Greater Manchester vary. People under the age of 65 are more likely to still be working and possibly have younger families and financial commitments. As young onset dementia is rare compared to dementia over the age of 65, services are often not age appropriate. There are specialist groups across Greater Manchester but not in every locality and due to the smaller population, individually these may not be very well attended.

What we’ve achieved so far

  • Diagnosing Young Onset and Rare Dementia webinar on 16th December 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) consequently feeling more aware of the issues pertinent to diagnosing young onset and rare dementia. Below was our word cloud feedback.      

  • 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. Below was our word cloud feedback


  • 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 page under “Young Onset and Rare Dementia”. The FTD films are good for formal and informal carers to understand what it is like to live with and care for someone with FTD with 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 may 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 leaflet was 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.

Next Steps

  • Our Greater Manchester Approach to Young Onset and Rare Dementia is a summary of our work to date. Through our engagement with Greater Manchester localities and through valuable research projects like the Angela Project, it summarises some of the key issues faced by those with young onset and rare dementia and some of key outputs of the project. It also highlights some next steps for localities to consider in improving diagnosis and post diagnosis for this audience. These next steps will be reviewed by Dementia United to see how they can hopefully be progressed.