Young Onset: Thursday 26 October 8.30-10 am GMT
This was the first Young Onset Conversation to address the impact of creativity for people living with the condition and its real value when employment ceases.
There are 3.9 million people worldwide, 70,000 in the UK, living with young-onset dementia (under the age of 65). Diagnosis takes on average 4.4 years to achieve, rather than two years for older people. The impact on their lives is likely to be greater as they are probably still working, with significant financial commitments such as a mortgage and they may also have families to support.
With no known cure at present, creativity is proving unexpectedly engaging for them, preserving cognitive function and wondrous sense of achievement, identity and wellbeing in the community. For our specialist Greengross A4D Global Arts for Brain Health Changemaker Young Onset Conversation, there was lively dialogue between the most inspirational speakers and authors, on the impact of arts in their lives post diagnosis – Kate Swaffer, Keith Oliver, Wendy Mitchell, Chris Norris and Gail Gregory. Our chair Jan Oyebode, Professor of Dementia Care at the University of Bradford, set the context and discussed The Angela Project’s focus on improving diagnosis and post-diagnostic care in young onset. She is herself a keen photographer. Access and Support was discussed by Tessa Gutteridge and Hamaad Khan, Development Officer at the Global Social Prescribing Alliance, a College of Medicine Young Fellow and co-author of the first global report on social prescribing in collaboration with the World Health Organisation, explained how with the clinical sick-care approach, social prescribing empowers people to engage in their cultural interests for their wellbeing, and how social prescribing students can engage with arts participants with dementia early in their careers. Tessa Gutteridge, Programme Director for Young Onset Dementia at Dementia UK explained the work of the Young Dementia Network, for support from diagnosis. Finally, Professor Adam Ockleford of the University of Roehampton introduced the life preserving impact of music in juvenile dementia.
A G E N D A
H O S T: Veronica Franklin Gould, President, Arts 4 Dementia
C H A I R : Professor Jan Oyebode, Professor of Dementia Care at the University of Bradford
S P E A K E R S:
- Professor Jan Oyebode, The Angela Project
- Kate Swaffer, author, human rights activist, academic, poet, photographer, Australia
- Keith Oliver, international speaker, Alzheimer’s Society Ambassador, photographer, author, poet
- Wendy Mitchell, author, photographer, social media champion, blogger
- Chris Norris, tenor horn player in brass bands, Alzheimer’s Society Ambassador
- Gail Gregory, artist and blogger
- Hamaad Khan, Global Social Prescribing student champion scheme , SP as Access, link between person, GP and arts programme
- Tessa Gutteridge, Chair, Young Dementia Network and Programme Director for Young Onset Dementia, Dementia UK
- Professor Adam Ockelford, Professor of Music, University of Roehampton, introducing music for children with Batten disease.
S P E A K E R B I O G R A P H I E S
PROFESSOR JAN OYEBODE is Professor of Dementia Care at the Centre for Applied Dementia Studies, University of Bradford, where she is also Co-Director of a Doctoral Training Centre on Transitions in Dementia Care. She is also a registered clinical psychologist. Her current research interests focus on relationships, coping with life with dementia, and family caring, including how culture, age of onset and type of dementia impact on these. Her projects related to young onset dementia include The Angela project (Improving Diagnosis and Post-diagnostic Support for People with Young Onset Dementia and their Supporters) and RHAPSODY (Research to Assess Policies and Strategies for Dementia in the Young). Jan has written both academic papers and more accessible briefings on young onset and frontotemporal dementia. Jan leads the Young Dementia Network Research workstream.
OLIVER GRABER is Dean of the faculty of Music and head of the Head of Research Institute for Music Medicine, Jam Music Lab University in Vienna. Internationally active as a composer, pianist, dramaturge and author, he taught at the University of Music and Performing Arts Vienna (music effects research) and was dramaturg of the Vienna State Ballet. With his digital system solution “Ludwig Med” he provides current contributions to computer-assisted functional composition for clinical use in intensive care units; As founder and Co-Director of the JAM MUSIC LAB, he is responsible for the artistic area of the new Institute for Music Medicine, which he set up in collaboration with the physician Klaus-Felix Laczika.
KATE SWAFFER is researcher and published author and poet, with a MSc in Dementia, Bachelor of Psychology, Bachelor of Arts, GradDip in grief counselling, and retired nurse. She is a global campaigner for the human rights and disability rights of older people and people with dementia, having won numerous awards, including the 2017 Australian Of The Year in SA. Kate has played a vital role as a catalyst for change in dementia globally, and co-founded the Dementia Alliance International, a global group for people with dementia. She lives with young onset dementia and writes about her experiences on her website.
This presentation will discuss my experience of a diagnosis of a rare young onset dementia as a working mother of two teenage sons, and a university student. My employment was terminated upon disclosure of the diagnosis, and although dementia causes disabilities, not one health care professional, or service provider including the national dementia charity advised me of this, nor that I had rights under the disability discrimination act and the CRPD to be supported to stay at work. I will then compare how being supported as a student with disabilities, enabled me to continue to live my own life, meaning, to continue with my studies, and on to my PhD with disability support. This is a major rights issue facing all people with dementia. I don’t want a new identity; I needed support to maintain the life I had prior to diagnosis. Dementia has also given me many gifts. It has given me a clarity about life despite the increasing fog, and a new creativity that includes poetry, photography and design. Whilst there are progressive changes to my cognitive capacity, and memory, my thinking has become visual, and I believe I’ve created new neural pathways through continuing tertiary studies. A proactive rehabilitation program has been the other key to my not having progressed as anticipated. It is time we support people to live their best life possible with dementia, not only to prescribe disengagement, and die from it!
KEITH OLIVER lives in Canterbury with his wife and until diagnosed aged 55 with Alzheimer’s in 2010 he was headteacher of a large primary school, studying for a masters degree and a primary schools adviser. In 2012 he created the first NHS Dementia Envoy based in Kent. An Alzheimer’s Society Ambassador, he has published or contributed to four books about his life since diagnosis, and is currently co-editor on an Open University book series on dementia, inspired by Tom Kitwood. Keith’s passion for creativity, borne of his days as a teacher and head teacher of a school recognised by the Arts Council with Gold Artsmark, has remained undiminished since his diagnosis. Whilst frustrated not to continue to play his guitar he writes both poetry and short stories and for the past two years has taken up watercolour painting. In August 2018 he spoke at the United Nations in Geneva about the rights of people with dementia, and has spoken previously at many dementia conferences in the UK and US and beyond, since the pandemic. His activism and vision in the world of dementia was recognised by Canterbury Christ Church University who awarded him an honorary doctorate in 2021.
WENDY MITCHELL I was diagnosed with Young Onset Dementia on the 31st July 2014 at the age of 58 years young. Post diagnosis, I was so shocked by the lack of awareness, both in the community and the clinical world, that I now spend all my time travelling around the country raising awareness and encouraging others to speak out in order to reduce the stigma associated with dementia. I am now proud to be the author of the not one but two Sunday Times best sellers, Somebody I Used to Know, and What I wish people knew about dementia, and two Honorary Doctorates. My third and final book, One Last Thing, Living with the end in mind has just been released. Who would have thought that possible nine years ago when I was diagnosed? .
CHRIS NORRIS was diagnosed with frontotemporal dementia in December 2012 In the 1970’s, he was a musician in the Mounted Band of HM Lifeguards. On leaving the Army, he continued his music and was a founder member of Kent Police Band in 1977.He still plays in Brass Bands and most weeks he can be found playing his tenor horn in concerts somewhere in Kent or further beyond. He was part of a project with Arts 4 Dementia in London where musicians who have a diagnosis of dementia were encouraged to become involved in music making. This was run alongside the English Chamber Orchestra and the London College of Music and proved to be very successful. Chris is an Alzheimer’s Society Ambassador and a Kent Dementia Envoy.
GAIL GREGORY 2019 – I found myself in a new chapter of my life after i was diagnosed with early onset Alzheimer’s at the age of 54. I now live as positively as i can, always looking for something to stimulate my brain. I start my day with an early morning walk with my Scottie dog Toby, enjoying our beautiful local surroundings, helping me create wonderful everlasting memories through the lens of my camera. I believe i need to keep my brain as active as possible. So i focus on the things i can do, like my art, my crafts, blogging, walking and photography. Live life, every moment is precious.
HAMAAD KHAN a medical student and Global Development Officer at NASP, is dedicated to advancing global health systems with a focus on health promotion and disease prevention. He holds a Neuroscience degree from King’s College London and an MSc in Global Health and Development from University College London. Hamaad’s research focuses on international social prescribing models. He collaborated with the WHO to author the first global report on social prescribing, highlighting healthcare policy advancements in 24 countries. His goal is to integrate this knowledge into clinical practice, driving broader systemic healthcare changes. Hamaad co-leads the Global Social Prescribing Student Council, collaborating with student leaders worldwide to enhance social prescribing education in health curricula. In 2022, his advocacy against overprescribing in medical education earned him the youngest-ever Hillary International Award for Health & Care Leadership.
TESSA GUTTERIDGE. Motivated by family experience of dementia, Tessa has focussed on young onset dementia for more than two decades. As the driving force behind YoungDementia UK, the first national charity for young onset dementia, Tessa led the creation of a range of award-winning services. Following a welcome merger, Tessa, as Dementia UK’s Programme Director for Young Onset Dementia is encouraging the growth of a range of specialist nursing support and information. Tessa observed the inequity that exacerbates every aspect of the experience of young onset dementia and recognised the different impact of dementia in mid-life. Hence in 2016 Tessa initiated, with highly motivated collaborators including Dementia UK, the Young Dementia Network. With Tessa as its chair, this online community’s aim is to improve the lives of people with young onset dementia now and in the future. Tessa believes that everyone should be enabled to live as fully as they can, whatever their disability or circumstances. She continues with optimism and hope.’
PROFESSOR ADAM OCKELFORD is a music psychologist based at the University of Roehampton in London. His research interests include the impact of different neurological conditions on the development of musical abilities in childhood and, conversely, the potential of music to mitigate the effects of neurodegeneration. He has worked extensively with children and young people with Neuronal Ceroid Lipofuscinosis (Batten disease). Symptoms include blindness, epilepsy and the decline of speech, language and swallowing abilities. Adam led a three-year project that examined the potential role of music in enhancing the lives of children and young people with NCL. The use of music in the form of ‘micro-songs’ was particularly effective in sustaining language when speech itself was no longer possible, and the capacity of music to enable children and young people can engage deeply and meaningfully with family members and friends, even in the most advanced stages of the disease. See https://soundsofintent.app/outputs/Output%20126%20-%20Batten’s%20and%20Music%20Report,%20The%20Amber%20Trust,%202019.pdf
VERONICA FRANKLIN GOULD, President, founded the charity Arts 4 Dementia in 2011 to develop weekly learning and participation programmes at cultural venues, to re-energise and inspire people above early symptoms of dementia, with a website signposting arts opportunities for dementia nationwide. She worked with Dementia UK to devise training and insight for arts facilitators, and with universities to provide best-practice conferences and reports. Her inaugural A4D Reawakening the Mind programme (2012-13) won the London 2012 Inspire Mark and Positive Breakthrough in Mental Health Dementia Award 2013 and she was 2014 Sunday Times Changemaker finalist. On publication of Music Reawakening (2015), she was appointed A4D president. Her regional guide Reawakening Integrated: Arts & Heritage (2017) mapping arts opportunities for dementia aligns arts within NHS England’s Well Pathway for Dementia. Her social prescribing campaign (2019-23) encourages professionals to empower people to access wide-ranging arts from the outset of symptoms, to preserve their Brain Health, with practice disseminated in A.R.T.S. for Brain Health: Social Prescribing as Peri-Diagnostic Practice for Dementia (2021). Her Global Social Prescribing: The A4D Arts for Brain Health Debates involved speakers and delegates from 40 countries around the world. Veronica is on the board of Arts in Medicine and The Amber Trust.