Greengross A4D Global Arts for Brain Health Changemaker – Rare Dementias – Conversation, 18 Jan 24

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Rare Dementias: Thursday 18 January 3-5 pm GMT

More than 55 million people worldwide, 944,000 in the UK, of whom between 5% and 15% receive a diagnosis of a rare, inherited or young onset dementia. These conditions tend to occur at a younger age than Alzheimer’s disease, the most common cause of dementia, and can cause symptoms that are not only memory-related. These include difficulties with vision, language, movement and behavioural changes. 

Rare Dementia Support UK provides support for seven rare dementias: Posterior cortical atrophy (PCA), Primary progressive aphasia (PPA), Frontotemporal dementia (FTD), Familial frontotemporal dementia (fFTD), Familial Alzheimer’s disease (FAD), Lewy body dementia (LBD), Young-onset Alzheimer’s disease (YOAD.)

As people living with Rare Dementias explained in our Young Onset Conversation in October, personal expression through creative activities, whether reviving or learning afresh, spending time in nature and with others, enables enduring sense of achievement, or hope, of connection.

This Conversation, chaired by Professor Sebastian Crutch, Professor of Neuropsychology at the Dementia Research Centre, UCL Institute of Neurology, will explain the neuroscience and present a range of research, lived experience and practice in the UK members of Rare Dementias Support UK speaking on the impact of their chosen arts, Sweet Patootee Arts giving the Caribbean perspective and Eloisa Stella and Cristian Leorin of Novilunio in Padua, Italy discussing their rare dementias arts programme and their members discussing and campaigning for arts support for rare dementias in Italy

Who for?

If you work in the arts for health sector, are involved in rare dementia research or practice, innovative creative ageing, dementia prevention, social prescribing, are keen to discover new paths to preserve brain health, to enable people and their loved ones from the onset of dementia to live their best lives through creativity , join us for this key online conversation between world leaders in the field,

A G E N D A

H O S T:  Veronica Franklin Gould, President, Arts 4 Dementia

C H A I R : Professor Sebastian Crutch, Professor of Neuropsychology at the Dementia Research Centre, University College London (UCL) Institute of Neurology and clinical lead for Rare Dementia Support.

S P E A K E R S:

S P E A K E R B I O G R A P H I E S

PROFESSOR SEBASTIAN CRUTCH is Professor of Neuropsychology at the Dementia Research Centre, UCL Institute of Neurology and is the clinical lead for Rare Dementia Support. Seb studied Experimental Psychology at Oxford University, before completing his PhD part-time whilst working at UCL and qualifying as a Clinical Psychologist (CPsychol). His research focuses on rare and young onset dementias, especially posterior cortical atrophy (PCA), the so-called ‘visual variant’ of Alzheimer’s disease (AD). The work has led to improved understanding of dementia-related visual impairment and the causes and consequences of atypical AD more generally.From 2016-2018, he directed the Created Out of Mind residency at The Hub, Wellcome Collection, bringing together artists, scientists and people living with dementia in a collaboration of over 60 individuals, institutions and charities aiming to shape and enrich public and professional perceptions of the dementias, and explore the opportunities afforded by collaborative, interdisciplinary, publicly-situated research.

CHARLIE HARRISON  As a visual artist and arts consultant, Charlie co-ordinates ‘Rare Space’ a new part of Rare Dementia Support which aims to bring together and celebrate the creative and cultural life of RDS members. Charlie has seen first-hand the huge part that cultural activities play in people’s lives together and over the past decade he has devised and consulted on a series of research and engagement projects that foreground the creative strengths, celebrate the diverse experiences and highlight the expressive will of people living with these conditions.

HELENA & DAVID CLARKE  Helena was diagnosed with Posterior Cortical Atrophy in 2020, after having originally been told she had a visual impairment. Over the past 3 years, Helena and David have engaged in a series of creative projects alongside Rare Dementia Support, including being involved in the development of the Rare Space Garden designed by Charlie Hawkes, which achieved a gold award at RHS Chelsea Flower Show 2023. Helena is an artist in her own right, making drawings and paintings which reflect on and adapt to the challenges of life living with PCA. Helena and David incorporate creativity into their lives in several ways, whether it be rewilding their garden, cooking improvised soups, swimming in the sea or visiting cultural venues together.

CHRIS & ANDREA CHADBURN Since 2021 Chris has been living with a diagnosis of logopenic variant Primary Progressive Aphasia, a rare form of dementia which presents challenges with language and speech. Both Chris and Andrea include the arts into their daily lives through painting, drawing, sewing and poetry. Andrea has always been creative and often works with watercolours. Artmaking is a relatively recent endeavour for Chris but he particularly enjoys painting pictures of buildings and making cards for friends and family. They love gardening and cooking together and having just celebrated their 50thwedding anniversary, they are determined to continue living life to the full.

TONY THOMPSON & REBECCA GOLDSTONE, co directors of Sweet Patootee Arts. Tony and Bec are producers of documentaries and heritage interpretation, bringing inspiring, compelling and diverse stories of real people to an international audience. Over the past 2 years they have been working alongside Rare Dementia Support for their touring exhibition TURNING POINT, a series of four short films inspired by oral histories about the Black Caribbean experience after the First World War. Together with Rare Space they are currently undertaking a knowledge exchange with community groups, arts venues, football clubs and dementia networks to learn more about Black British Caribbean Heritage, share information about rare dementias and generate new creative ideas.

MONICA BOULTON is the Healthcare Integration Lead for the National Academy for Social Prescribing and a Non-Executive Board Member for Musical Walkabout CIC. Monica has been involved in Social Prescribing for nearly 10 years after her Music degree confirmed her passion for how important the creative arts are for people with Dementia. Having worked as a Social Prescribing Link Worker and managed multiple social prescribing projects, and volunteered as both a SPLW Manager’s champion and national expert for the National Association of Link workers, Monica has a true sense for the difference Social Prescribing can make not only to people’s lives but to the health system and communities too. Monica is passionate about community development, and has extensive experience in the voluntary sector alongside providing some Social Prescribing System consultancy work.

FRANCESCO PARISOTTO, also known as “Frank,” is a passionate advocate living with Cadasil, a rare form of genetic vascular dementia. Born in Baden, Switzerland, in 1965, he returned to Italy at the age of six and settled in Bassano del Grappa, in the Veneto, in northern Italy. Frank has worked as a mechanic and a sales consultant for a medical cannabis store. He married his wife Fanny, who has multiple sclerosis since 2010. For over 25 years, Frank has volunteered at the local civil protection association and helped communities devastated by natural disasters. In 2015, after a series of ischemic strokes, he received his Cadasil diagnosis. His mother also suffered from the same condition and was assisted by Frank throughout her long illness. Frank and his wife have managed to maintain autonomy and wellbeing despite the limited resources offered by their community. In 2021, they joined Novilunio’s peer support groups in Padua and participated in a local support group for people with early-onset dementia. Recently, Francesco has discovered the power of poetry to express hardships and hopes after diagnosis. He is currently working on his first collection of 60 poems, which will be published later this year.

TIZIANO TRACANZAN is an advocate with dementia who received a diagnosis of early-onset Alzheimer’s two years ago, at the age of 62. Born and raised in Grantorto, a small village near Padua, Tiziano worked for several years as a Sales Account Manager for Italian, Swiss, and American companies. He has travelled extensively both in Italy and in other parts of the world, for work or pleasure, with his Harley Davidson bike. Tiziano was the primary caregiver for his mother, who died of Alzheimer’s over 30 years ago. In 2022, he joined Novilunio’s local peer support group for people living with dementia. Last year he also joined as a member and co-facilitator of a support group for people with aphasia. He also contributed to the design of the cultural activities programme for families associated with Novilunio.

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 website to signpost arts activities 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 Vice-President of Decibels on the advisory boards of the Global Arts in Medicine Fellowships and The British Society for Lifestyle Medicine and Trustee of The Amber Trust.

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