Contributions of patient and citizen researchers to ‘Am I the right way up?’ study of balance in posterior cortical atrophy and typical Alzheimer’s disease

Abstract

The current report describes the journey from the sharing of a single, extraordinary experience during a support group conversation to the development of a novel scientific investigation of balance problems in a rarer form of dementia. The story centres around the involvement of people living with or caring for someone with posterior cortical atrophy (often referred to as the visual variant of Alzheimer's disease) in highlighting hitherto under-appreciated consequences of their condition upon their ability to know 'Am I the right way up?'. We describe how comments and descriptions of these balance symptoms were collated and communicated, and the involvement of people with posterior cortical atrophy in shaping a series of scientific hypotheses and developing and adapting appropriate experimental materials and procedures. We also reflect more broadly on how we might better recognise, acknowledge and encourage different forms of involvement, and describe several engagement-inspired extensions to the research involving people living with dementia, scientists and artists.

Full text

Article
Contributions of patient and
citizen researchers to ‘Am I
the right way up?’ study of
balance in posterior cortical
atrophy and typical
Alzheimer’s disease
Sebastian J Crutch and Keir XX Yong
Dementia Research Centre, Institute of Neurology, University College
London, London, UK; Created Out of Mind, The Hub, Wellcome
Collection, London, UK
Amy Peters
Sobell Department of Motor Neuroscience and Movement Disorders,
UCL Institute of Neurology, University College London, London, UK
Dilek Ocal
Dementia Research Centre, Institute of Neurology, University College
London, London, UK
Diego Kaski
Sobell Department of Motor Neuroscience and Movement Disorders,
UCL Institute of Neurology, University College London, London, UK
Aida Suarez Gonzalez and Natalie Ryan
Dementia Research Centre, Institute of Neurology, University College
London, London, UK
Simon Ball
Berlin, Germany
Corresponding author:
Sebastian J Crutch, Dementia Research Centre, UCL Institute of Neurology, Box 16, National Hospital, Queen Square,
London WC1N 3BG, UK.
Email: s.crutch@ucl.ac.uk
Dementia
2018, Vol. 17(8) 1011–1022
!The Author(s) 2018
Article reuse guidelines:
sagepub.com/journals-permissions
DOI: 10.1177/1471301218789296
journals.sagepub.com/home/dem

Charlie R Harrison and Charlie Murphy
Created Out of Mind, The Hub, Wellcome Collection, London, UK
Pam Hulme, Isabel Phillips, Gaynor Hulme,
Andrew Brown and Lu Brown
Rare Dementia Support, London, UK
Peter Riley and Lynn Ramsey
Alzheimer’s Society Lay Review Panel
Anthony Woods
Wellcome, London, UK
Brian Day
Created Out of Mind, The Hub, Wellcome Collection, London, UK;
Sobell Department of Motor Neuroscience and Movement Disorders,
UCL Institute of Neurology, University College London, London, UK
Abstract
The current report describes the journey from the sharing of a single, extraordinary experience
during a support group conversation to the development of a novel scientific investigation of
balance problems in a rarer form of dementia. The story centres around the involvement of
people living with or caring for someone with posterior cortical atrophy (often referred to as the
visual variant of Alzheimer’s disease) in highlighting hitherto under-appreciated consequences of
their condition upon their ability to know ‘Am I the right way up?’. We describe how comments
and descriptions of these balance symptoms were collated and communicated, and the involve-
ment of people with posterior cortical atrophy in shaping a series of scientific hypotheses and
developing and adapting appropriate experimental materials and procedures. We also reflect
more broadly on how we might better recognise, acknowledge and encourage different forms
of involvement, and describe several engagement-inspired extensions to the research involving
people living with dementia, scientists and artists.
Keywords
balance, vestibular, Alzheimer’s disease, patient and public involvement
Aims and background
It is difficult to report the ‘aim of PPI’ per se in the current study as technically PPI preceded
the study. The origins of the research – by which we mean the ideas and creative inspiration
which led eventually to formal scientific hypotheses – lie in a broader ongoing relationship
between people with posterior cortical atrophy (PCA), care partners, clinicians and
1012 Dementia 17(8)

researchers formed through our PCA Support Group (2011; www.raredementiasupport.org/
pca/). It was at one of these meetings in the Dementia Research Centre in September 2013
that Pam Hulme and Isabel Phillips related how their mother(-in-law) Gaynor Hulme had
recently asked them, ‘Am I the right way up?’. This comment was remarkable as PCA, the
condition with which Gaynor lived, had hitherto been known primarily for its characteristic
progressive loss of visual processing (difficulty seeing what and where things are owing to
degeneration of the visual cortex; an issue of ‘brainsight’ not eyesight; Benson, Davis, &
Snyder, 1988; Crutch et al., 2017). Though not the first hint of non-visual sensory challenges
in PCA (see Group discussions and Q&As below), Gaynor’s subjective experience strongly
suggested a broader disruption of the way in which the balance system integrates different
types of sensations.
1
The only relevant previous investigation the DRC clinical research team had been
involved in was triggered by another person with PCA describing how she had once expe-
rienced a complete 180room tilt illusion: ‘When I got downstairs the whole of the room
was upside down, which was actually very scary but I got over that when I realized it was
OK if you know what I mean. But it was completely reversed, the bottom was on the top
and the top was on the bottom. Do you see what I mean? It was most peculiar.’ (Crutch
et al., 2011, p. 12). However, to the best of our knowledge this experience only occurred once
and has not been described by other people with PCA.
Therefore the primary aim of subsequent PPI activities was to understand whether
Gaynor’s experience was shared by others, and to gather descriptions of balance problems
in PCA to help frame a scientific investigation of the phenomena.
Methods and results
1. Collating comments and descriptions of symptoms from group discussions and Q&As
Methods: The first action was to collate evidence of balance difficulties from previous group
discussions, support group Q&A sessions and clinical conversations. We retrospectively
reviewed recordings of previous PCA Support Group meetings where relevant topics had
been discussed. These included a talk and subsequent Q&A by neuro-ophthalmologist
Diego Kaski and neurologist Natalie Ryan on dizziness (March 2011; see references) and
a further presentation by Natalie Ryan about unusual symptoms (2012).
Results: The relaying of Gaynor’s experience at the September 2013 meeting prompted
another support group member in attendance to comment: ‘I just wanted to say something
about posture because I also think that’s a bit of a problem. [My former partner who has
PCA] doesn’t just shuffle but he’s leaning to one side ... and it’s just very, very difficult, and
you can’t get him to stand up straight, and it also means helping him to get a jacket or coat
on is that much more difficult.’
The review of the 2011 and 2012 meetings revealed that complaints of ‘dizziness’ were
common, with a number of care partners also reporting people with PCA leaning to one side
when walking or sitting with their head in their laps. It was also evident from one gentle-
man’s comments that posture might be perceived to be imbalanced even when not obviously
misaligned in the physical world; he described that when walking along a pavement, ‘I felt
like I was about to fall off the edge of the world’.
These reports were consistent with our informal review of clinical experience amongst
colleagues prompted by Gaynor’s remark, who described consequences of dysfunctional
balance in support group members and research participants which had been intimated
Crutch et al. 1013

through reports of being less likely to leave the home due to fear of falling. For example,
some participants described being particularly hesitant to leave the home after rainfall (not
only because surfaces were more slippery, but also because of interference with perceiving
the depth of reflective surfaces), considerably reduced mobility, and injuries arising
from falls.
2. Connecting people with relevant expertise
Methods: The next step in the development of the research project was to bring members
of the PCA Support Group with a lived experience of balance problems into conversation
with experts in the neuroscience of balance.
Results: Support group members gave verbal consent for their quotes to be shared with
Brian Day and Amy Peters from UCL’s Sensorimotor Laboratory in Queen Square. These
comments and descriptions were invaluable for familiarising these researchers, who had not
worked previously with individuals with PCA, with the condition.
3. Pilot testing and feedback
Methods: Pilot testing was arranged, with PCA Support Group members Andrew and Lu
Brown attending the Sensorimotor Laboratory on two occasions (March and April 2014) to
participate in preliminary discussions and investigations. Subsequent minor modifications to
stimuli and apparatus were made following input from other participants early in the test-
ing phase.
Results: Andrew completed pilot testing of several tasks including the manipulation of
sense of balance by rotating visual dots (see Figure 1). Andrew’s performance on existing
experimental paradigms informed the scientific hypotheses. For example, it became appar-
ent that it would be necessary not just to test standing balance but also visual perception of
the vertical when seated.
His interactions with the test equipment also determined which response measures (e.g.
verbal report, button rotation, manipulation of a response bar) might be most appropriate
for individuals with PCA. Observation and explicit feedback triggered a number of specific
modifications to the testing apparatus, e.g.
•Use of a larger knob for controlling the rod in rod-and-frame test (during which partic-
ipants try to maintain the verticality of a rod within a vertical or learning frame). The
standard smaller knob was too difficult to manipulate, partly owing to the co-occurrence
of apraxia in PCA.
•Introduction of a soft head brace to create a fixed head position during the rod and
frame, rod and dot motion tests.
•The original rod in the rod and frame test consisted of individual blobs but this was not
appropriate because of PCA patients’ problems with perceiving fragmented figures as
whole forms. In the same regard, the frame was originally just an outline but elements of
this frame were misperceived as being the target rod. Consequently the frame was
exchanged for a filled grey shape (circle or rectangle) to make it more continuous but
maintain the contrast of light rod against a dark background. This required complete re-
programming of the rod and frame experiment to generate a non-pixelating stimulus rod
1014 Dementia 17(8)

and the new frame, plus adjusting the size of the stimulus to account for participants’
reduced effective field of vision (Crutch et al., 2011).
•We created an apparatus to provide tactile and visual assistance when positioning feet for
standing tasks in response to participants having considerable difficulty standing on a
marked position on the floor for trials.
Andrew’s descriptions of experiences also led to the introduction of additional paradigms
into the planned project. For example, his memorable statement ‘I sat on my vicar’ (in
reference to a dinner party when, on returning to the table from the bathroom, he had
misjudged the location of his empty chair and had accidentally sat in the lap of the neigh-
bouring guest) led us to measure directly people’s movements and accuracy in manoeuvring
their body to sit on a target location on a bench.
4. Review of funding application, ethics application and annual Research Network visit
Methods: People with PCA and care partners reviewed the funding application and ethics
application documents. The Alzheimer’s Society grant review process also involved feed-
back from the Research Network comprising people living with or caring for someone with
dementia. Once funded, the research team also participated in annual monitoring visits from
representatives of the Research Network.
Figure 1. Visual perturbations – impact of visual motion on perception and standing balance. This
experiment evaluates whether visual motion (rotating dots) can be misinterpreted by people with dementia
as indicating self-movement (‘I’m moving’) rather than movement of the world (‘the dots are moving’).
(a) The participant stands on force plates in front of a projection screen. (b) A rotating visual scene is
presented, consisting of dots moving at constant acceleration or velocity. The direction, speed and
acceleration of the dots are varied and the resulting lean to either side and change in pressure on the feet
measured. In our preparatory studies (c), Andrew (thick line) showed abnormally large leaning responses
relative to controls (thin line) when presented with moving dots. Unlike the controls, Andrew also showed
no initial correction of this lean (dotted red circle). This pilot experiment indicated possible damage to a
specific mechanism that makes rapid decisions about whether the self or the world is moving, which is key to
preventing leaning and falls.
Crutch et al. 1015

Results: The project received funding from the Alzheimer’s Society, in part owing to the
level of patient and carer involvement in the development of the project. Despite PCA being
a relatively rare condition, we were fortunate that one visiting member of the Research
Network who himself lives with PCA subsequently participated in the experiment. No
payments were made to non-UCL staff team members, but travel and subsistence expenses
related to study participation and PPI activities were paid.
5. Review of participant information sheets and consent forms
Methods: A substantial amendment to existing study ethics was drafted in 2016, prompted
largely by feedback from participants with PCA on the consenting process. A proportion of
patients demonstrated considerable difficulty with reading information sheets and/or writing
on consent forms due to visual processing and coordination difficulties. Consequently, core
features of the amended study documents and protocol included approaches to maximise
accessibility of study documents and consenting procedures for participants with PCA, as
well as separating the overall study into sub-studies to facilitate interpretability of what
participants would be asked to do on different research visits. A care partner reviewed
draft patient information sheets, consent forms and study protocol (May 2016).
Results: The amendment formalised how to present information sheets, support partic-
ipants negotiating consent forms with multiple boxes requiring written responses, and pro-
vided the option of verbal audio-recorded consent. Benefits of the care partner review
included reducing unnecessary application of terminology within information sheets/con-
sent forms (e.g. use of ‘pair’ rather than ‘diad’).
6. Involvement in engagement, and engagement-inspired extensions to the research
Figure 2. Left panel: Charlie Murphy’s ‘balance’ photograms investigating participants’ experiences of self-
doubt, disorientation and suspension during balance tests, in the Trajectories exhibition at LifeSpace Science
Art Research Gallery, Dundee (2 February–2 June 2018; http://lifespace.dundee.ac.uk/exhibition/trajecto
ries). Middle panel: Illusion Vase by Rachel Wilcock (from Central St Martins’ BA Ceramic Design collective
Studio Senses) using 3D modelling software to visualise changes in perception of shape and orientation from
different angles. Right panel: Murphy’s typographic experiments with Gaynor’s statement provided the
stimulus for participatory letter press workshops with people with dementia and care partners during 2017
Dementia Awareness Week.
1016 Dementia 17(8)

Methods: Opportunities for engaging a variety of audiences with the topic were apparent
early in project development, with the funding application including support for film maker
Simon Ball to create an animation based on interviews with people with PCA and their
partners. The advent of the Created Out of Mind dementia and arts residency at The Hub,
Wellcome Collection, also yielded opportunities for people with PCA to share their subjec-
tive experiences of the condition and of the balance testing sessions with artists including
Charles Harrison and Charlie Murphy.
Results: Inspired by six personal stories, the resulting animated film ‘Do I See What You
See?’ recreates what it feels like to live with the knowledge that your brain might be playing
tricks on you and you are seeing differently from everyone else. The film can be viewed at:
http://www.createdoutofmind.org/stories-and-reflections/do-i-see-what-you-see. The study
also inspired a number of public events, workshops, student collaborations and displays
(see Figure and 2) and a novel arts-science experiment in the form of a painted gestural
equivalent of the balance study’s rod-and-frame verticality test (Figure 3).
Discussion
In the current report, we highlight the crucial role of people living with rarer dementia
syndromes such as PCA in raising awareness not only of their condition as a whole but
specifically of often under-recognised characteristics and consequences of that condition.
The involvement of people with PCA was important at every stage of the investigation, not
least in triggering the whole study (see further discussion of ‘inspiration’ below). As the topic
of balance in PCA had not been examined previously, without the involvement of people
from the earliest stages, it would not have been possible to develop a scientifically appro-
priate, rigorous or valid approach to these problems. This critical input was particularly
highlighted by the numerous and extensive changes made to the test materials and proce-
dures during and following pilot testing without which the data collected from subsequent
participants would have been noisy, unreliable and in some cases simply unobtainable.
Figure 3. Left panel: Single Yellow Lines, Charles Harrison’s painting-based exploration of ‘in the moment’
experience in which PCA and other support group members were invited to paint two single lines, one
straight and one of their choosing. Middle and right panels: Collaborative research between Harrison and
Prof Brian Day into controlled and creative painted gestures made at UCL Sensorimotor Lab.
Crutch et al. 1017

PCA involvement in this project was greatly facilitated through links with the PCA
Support Group and the fact that some participants are known through repeated visits to
contribute to our PCA research programme over multiple years. Such participants and
carers have ended up carrying out roles through which we as researchers work with them
in a capacity that differs from a typical researcher–patient–carer dynamic (e.g. involvement
as participant þcitizen researchers, regional support group facilitators, advisory commit-
tee members).
Given the central importance of the lived experience of balance problems to the current
study, arguably one limitation is that we did not systematically collect audio recorded
debriefing data from participants. During other investigations in simulated environments
(e.g. Harding et al., 2018), participants have worn mobile eyetrackers which collect the
comments, reactions and reflections of participants during or between trials. However
there are clear trade-offs here between wishing to maximize the opportunity to learn from
participant experiences and not wishing to overcomplicate already complex paradigms or to
overburden participants with extra tasks during research visits.
It may also have been ideal to record participants articulating why disordered balance,
falls and fear of falls are meaningful at an individual level, in a similar way to when we
carried out studies with people with acquired dyslexia due to PCA who mentioned it meant
they could not read to grandchildren or placed it within the same bracket as losing the
ability to drive. As an example regarding balance and gait disturbances, the wife of an
familial AD participant in another study described her husband as having to move himself
down stairs at home while sitting as he did not feel comfortable walking down. We did not
systematically ask participants in the current study for examples of the everyday impact of
their balance problems, although many of the current participants had already contributed
to a separate qualitative, semi-structured interview-based study of living with PCA (Harding
et al., 2018).
The richness of the experiences shared by people living PCA before and during the study
are reflected not just in the variety of experimental tasks already administered or which
evolved during the study (see ‘Extensions to the research’ below), but also in plans for future
investigations. A number of additional behavioural phenomena have been described or
observed which will guide future experimental investigation into sitting and standing
dynamics and into behavioural strategies to support people experiencing dementia-related
balance problems. Owing to time constraints during research visits, it has also not yet been
possible to follow up on all tasks considered during pilot testing, such as the influence of
balance problems upon walking behaviour when approaching obstacles or narrow openings.
In this way, the contributions already made by people with or caring for someone with PCA
during this study are not limited in their usefulness or importance to the timeframe of the
current project.
Reflections and critical perspectives
Recommendations for recognising, acknowledging and encouraging different forms
of involvement
The central importance of Gaynor, Pam and Isabel’s comments in shaping the current
research project is for us an example of involvement by inspiration. Put simply, the whole
1018 Dementia 17(8)

research project can be traced back to a single statement, which was then affirmed and
elaborated upon by other members of the PCA Support Group. This and other similar
experiences of the many and varying contributions to research of patient and citizen
researchers have led us to recently propose recommendations for how these contributions
should be recognised, acknowledged and encouraged (Crutch, Herron, & Rossor, unpub-
lished). These contributions include:
1. Inspiration: generating new ideas and hypotheses, and challenging existing assumptions.
2. Context setting and training: opening up the lived experience to other researchers.
3. Project design and development: co-design, revision, feasibility assessment and piloting as
an active patient/citizen researcher.
4. Motivation and insights through participation in established projects.
5. Review, reflection and rethinking: scrutinising current work and improving
future research.
Communicating the crucial role of people with dementia in shaping research about the
conditions they live with may facilitate the involvement of people affected by other health
conditions in which PPI is less established.
Summary
The contributions of people living with dementia and their supporters have given rise to a
project that seeks to improve understanding, detection and management of balance prob-
lems in PCA, and provide a rounded account of its impact on people’s lives. Members of
the PCA Support Group and others should be acknowledged not just for participating in
the research, but for inspiring the project, setting the context, providing feedback which
shaped the design of experiments, and reviewing and reflecting upon the research as
a whole.
Lessons for practice: What worked and what would we recommend
to others
1. People living with dementia or supporting someone who is can influence research in a
variety of ways including inspiring the project, setting the context, providing feed-
back which shapes the design of experiments and reviewing and reflecting upon the
research as a whole.
2. These varying and creative contributions should be clearly acknowledged
and encouraged.
3. PPI can occur not just in committees and working groups formed specifically for the
purpose, but also prospectively through broader ongoing conversations and relation-
ships between people with PCA, care partners, clinicians and researchers in a variety
of settings.
4. PPI provides a critical mechanism for enhancing research through consideration of
the subjective experience of a health condition.
Crutch et al. 1019

Acknowledgements
This article is dedicated in loving memory to Gaynor Hulme (1948–2018) and Andrew Brown (1955–
2017). We are grateful to many members of the PCA Support Group for conversations about issues of
balance in everyday life.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or
publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or
publication of this article: an Alzheimer’s Society project grant (AS-PG-14-022). SC, SB, CH and CM
also receive support from Wellcome (200783). The Dementia Research Centre receives support from
the NIHR Queen Square Dementia BRU and the NIHR UCL/H Biomedical Research Centre.
Note
1. The balance system relies upon sensory information to relate body position to the gravitational
vertical and to report how the body is moving to stop you falling over. Visual, vestibular (from
inner ear) and proprioceptive (from muscles and joints) information all play a role but no one
sensory system on its own provides the brain with the complete story. Instead, the information from
all three has to be combined. Combining these types of information is known to require the parietal
lobes of the brain which are particularly vulnerable in PCA and typical AD.
References
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contributions to research of people with dementia and their carers.
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(2011). Abnormal visual phenomena in posterior cortical atrophy. Neurocase,17(2), 160–177.
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1020 Dementia 17(8)

Sebastian J Crutch a professor of Neuropsychology at UCL. His research focuses on rare
and young onset dementias, exploring topics including dementia-related visual impairment.
He directed the Created Out of Mind 2016–2018 dementia and arts residency at The Hub,
Wellcome Collection, a collaboration between artists, scientists and people living
with dementia.
Keir XX Yong is a research associate whose interests lie particularly in investigating per-
ceptual impairment experienced by individuals with neurodegenerative disease, ultimately to
develop aids and strategies to minimise the effects of such impairment.
Amy Peters is a research associate at the Institute of Neurology, University College London.
Her research interests include the control of gait and balance in Cerebral Palsy, Parkinson’s
Disease, Spinocerebellar Ataxia and Alzheimer’s Disease.
Dilek Ocal is investigating the heterogeneous nature between and within Alzheimer’s disease
variants, focusing on typical Alzheimer’s disease and Posterior Cortical Atrophy. Dilek uses
imaging and neuropsychological evaluations to study how Alzheimer’s disease variants give
rise to a diverse range of cognitive and behavioural changes.
Diego Kaski is a consultant neurologist at the National Hospital for Neurology and
Neurosurgery. He holds an honorary senior lecturer contract at University College
London and Imperial College London. His current research interests include the application
of imaging and behavioural paradigms to understand the cognitive mechanism of human
gait dysfunction and spatial orientation.
Aida Suarez Gonzalez is a clinical neuropsychologist and neuroscientist studying the cogni-
tive consequences of different neurodegenerative conditions. Her research is focused on the
design of efficient interventions to delay the functional loss resulting from cognitive decline
and support individuals to live well with dementia.
Natalie Ryan is a specialist registrar in Neurology with a clinical and research interest in
Cognitive Neurology, particularly young onset and inherited dementias. Her research focus-
es on the use of MRI to investigate early markers of pathological change in familial and
sporadic Alzheimer’s disease, including atypical presentation like posterior cortical atrophy.
Simon Ball, after studying Media and Film production in Bristol, UK, completed a masters
in Digital Arts at The University of the Arts, London. His creative practice spans Moving
Image, Animation, Photography and Installation-based projects.
Charlie R Harrison has been collaborating with researchers and building projects that fore-
ground the creative strengths of people with different forms of dementia for the past four
years. Charlie’s current research is focused on characterising creativity through singular
gestures whilst studying the curious intersections between neuropsychological testing and
conceptual art.
Crutch et al. 1021

Charlie Murphy’s art practice uses making as a methodology to research a variety of visual
and linguistic forms of expression through workshops, participatory events and collabora-
tions. Her work with glass, light, photography, performance and video has been presented at
gallery, museum, festival and public contexts in the UK and internationally.
Gaynor Hulme and her family, including Pam Hulme and Isabel Phillips, were long time
members of the Posterior Cortical Atrophy Support Group. It was their willingness to share
experiences which neither they nor the so-called experts understood which led to the current
research project.
Andrew Brown was diagnosed with PCA in December 2010 and was determined to be
involved in research into this disease ‘for the next generation’. Andrew was a successful
editor of various business titles. and Lu Brown worked as a hospital pharmacy technician
until she gave it up to care for Andrew. Andrew died in 2017.
Lu Brown worked as a hospital pharmacy technician until she gave it up to care for Andrew
Brown. Andrew died in 2017.
Peter Riley was a full-time carer for Myra over 10 years from her diagnosis with Alzheimer’s
Disease to her peaceful death at home. A retired Chartered Engineer and Academic Lawyer,
Peter was responsible for contracts in the nuclear field; he is now the Alzheimer’s Society
Research Volunteer Network Coordinator for the East Midlands.
Lynn Ramsey cared for her husband who was diagnosed in 1997. For more than 20 years she
been an external reviewer of research for the Alzheimer’s Society and was Chair of the
research network volunteers for many years. She has also appealed many cases for patients
regarding diagnosis and care.
Anthony Woods manages The Hub at Wellcome Collection – a transdisciplinary research
space embedded within Wellcome. Tony is a neurophysiologist by training, having been a
neuroscience lecturer at SGUL before his career at Wellcome. His interests now lie in pro-
moting and fostering transdisciplinary, co-creative research in the healthcare sector.
Brian Day is a professor of Motor Neuroscience at the University College London where he
directs the Whole-body Sensorimotor Laboratory. He has studied many different aspects of
motor control in a wide range of neurological diseases and currently works on multi-sensory
processes that control and integrate whole-body actions.
1022 Dementia 17(8)