Jackie Parkes, Professor in Applied Mental Health at University of Northampton and Peter Middleton, Patient and Public Involvement / Study Participant deliver their presentation titled "Defin-YD - Lived experience of young onset dementia" at the @NIHRtv ARC East Midlands "Dementia Care Research Symposium: Supporting Underserved Communities".
Learn about the impactful Deaf in YD project, a network for individuals diagnosed with young-onset dementia to actively engage in research and public involvement. This initiative, originally created to enable peer-supported involvement in research, connects participants across England to share lived experiences, contribute to clinical and academic projects, and help shape future dementia support and awareness efforts. Through collaborative meetings, resource-sharing, and an emphasis on sustaining community connections, Deaf in YD is empowering voices within the dementia community to make lasting contributions.
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Jackie is an experienced mental health nurse and has worked in a broad range of mental health and learning disability settings prior to moving into Higher Education. She is the Lead of the Northamptonshire Dementia Research & Innovation Centre at UON and lead for Public and Patient Involvement. Her subject specialisms are nursing and mental health research, with a particular focus on developing and implementing person-centred care pathways. She works extensively with local organisations to evaluate their provision of health and social care services, including community-based interventions for people living with dementia. She is the Chair of the Northamptonshire Dementia Action Forum and is a member of the Leicestershire Dementia Action Alliance.
Jackie has also established four community-based social groups for people with dementia; the Forget-me-nots Social YOD Group, Qualified by Experience (QBE) for former carers, and the Post-diagnostic Support UnityDEM Centre in Northamptonshire and the Lutterworth Share & Care Group for people with dementia and their carers in South Leicestershire. She has a particular interest in young onset dementia and has been a lead on the Alzheimer’s Society Angela Project (2016-19) looking at diagnostic accuracy and post-diagnostic support for young people with dementia; and is currently the Deputy Chair of Research at Young Dementia Network. She is also a member of the pan European Group InterDEM.
https://www.northampton.ac.uk/directories/people/jacqueline-parkes/
About Peter (in his own words) - There's nothing special about me, but it might help to know a little bit about my background.
I was born in 1954 and grew up in Clapham, South London. I married Pam in 1975 and joined the Royal Air Force (RAF) in 1976, spending the next 18 years working at home and abroad as an aircraft technician. I moved to Northampton on leaving the RAF and studied for an HND in Business Information Systems, which opened the door to a later career as a technical author and Senior Consultant in Information Systems. For the last 10 years before my retirement, I worked as a Police Community Support Officer (PCSO) in the Kingsthorpe and St David's area of Northampton.
I have 2 daughters and 6 grandchildren, I have a measured IQ of 153 and was a member of MENSA for over 20 years. I am an insulin dependent type 2 diabetic. I have Alzheimer's disease - I am living with dementia... Peter writes about his experiences of living with dementia in an amazing blog at : https://www.livingwithdementia.online/
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For more information on the NIHR ARC East Midlands visit:
https://arc-em.nihr.ac.uk/
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