Increasing awareness and opportunities for genetic testing
Exciting advances in DNA sequencing now enable genetic investigations of different types of young onset dementia. How can this become an accessible, routine and well-supported opportunity for people with young onset dementia and their families?
Our most recent pair of webinars offered you two different perspectives – the first focused on the support of the individual and family to consider and progress genetic testing. The second outlined the embedding of genetic testing within memory services and describes national efforts to promote equitable access.
Memory clinics and the NHS England Genomic Medicine Service
Our webinar in November 2023 was led by Dr Nick Bass, Honorary Consultant Psychiatrist. Nick described the North Thames Genomic Medicine Service Alliance transformation project to embed genomic investigation in mental health service provided memory clinics. And went on to discuss implications and initiatives at the national level to promote easy and equity of access to genomic investigations for younger people undergoing dementia assessment. The webinar included an interview with Jessica Harrison whose father has an inherited form of Alzheimer’s disease and she has herself undergone genetic testing.
Service improvement project to support the person with young onset dementia and their family
The diagnostic process for younger people with dementia should include access to genetic testing if required however this often is not routinely available. The Wokingham Memory Clinic and Oxford Centre for Genomic Medicine have developed a multidisciplinary approach to ensure genetic testing can be considered for younger people with dementia and their families. At our October 2023 webinar, they described this shared pathway, the unique role the Admiral Nurse plays and positive outcomes for the service
Navigating young onset dementia from pre-diagnosis onwards
Our webinar on Wednesday 21st February 2024 will be led by Jill Quinn, CEO of Dementia Forward. She will share the learning from Dementia Forward’s work with families at all stages of young onset dementia from before diagnosis and beyond
Our webinar on Tuesday 12th March 2024 will be led by Dr Janne Papma, Associate Professor and Head of the Alzheimer Centre Erasmus Medical Centre in Rotterdam. She will address support for people with young onset dementia and their caregivers during the diagnostic pathway at the memory clinic and how the gap from diagnosis to post-diagnostic care and support could be bridged