Previous work young onset and rarer forms of dementia

• Diagnosing young onset and rare dementia webinar on 16^thDecember 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 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.