Seeing what they see: compensating for cortical visual dysfunction in Alzheimer's disease

Lead Research Organisation: University College London
Department Name: Institute of Neurology

Abstract

Alzheimer's disease (AD) is often mis-perceived as a disorder largely or solely of memory. However the disease also affects the visual areas of the brain leading to problems seeing what and where things are. Dementia-related visual impairment tends to be neglected, partly because people assume any problems are due to the eyes rather than the brain, and because it occurs at a point when language and other skills are too impaired for the person with dementia to explain the perceptual problems they are having. Visual problems are also often mis-attributed to poor memory (e.g. a person with AD failing to recognize a family member in a photo may be thought to have "forgotten" the person, when in fact they may simply be unable to perceive the face clearly). Visual impairment in AD has received increased attention recently with the identification of the syndrome Posterior Cortical Atrophy (PCA) which is typically caused by AD but presents with dramatic impairment of vision not memory, as experienced and described by the author Terry Pratchett in his documentary Living with Alzheimer's.

Very few studies have explored the effect of impaired vision upon people with dementia or their caregivers. A motivation for improving our understanding of how people with AD see the world is that the limited number of small studies which have been conducted suggest that even simple changes to the environment (e.g. changing the colour of tableware from white to red) can compensate for vision problems in people with AD and lead to improved functioning and health (e.g. better eating and drinking).

The project objective is to demonstrate that helping AD patients to interact more successfully with their visual environment at home can have a significant positive impact upon the wellbeing and quality of life of both patients and carers. The project will involve 50 people with PCA, 150 with typical Alzheimer's disease and 100 healthy volunteers. The impact of visual aids and strategies will be measured at three time-points over the course of one year, with a staggered start to enable comparisons of quality of life in those with and without the intervention. The success of the project will be judged primarily using established measures of quality of life, caregiver burden, everyday abilities, and behavioural and psychological wellbeing. However, the design of the visual aids and compensatory strategies themselves will be based upon a combination of patient/carer interviews (qualitative evidence) and cutting-edge scientific understanding of the nature of visual impairments caused by conditions such as Alzheimer's disease (quantitative evidence). This quantitative evidence will be gathered through studies of patient's visual skills and eye movements, and their ability to move around a purpose-built laboratory environment, before the main study commences in patients' own homes.

Another important aspect of the project is the involvement of people with PCA, who experience AD-related visual loss but without the loss of memory and insight seen in typical AD. These individuals with PCA offer a new and unique perspective on the AD patient's view of the world. Their experiences of care homes and day hospitals draws attention to the fact that many current social and behavioural interventions for people with dementia may be limited in their effectiveness by over-reliance upon visual information and by a systemic failure to recognize visual impairment in many service users.

The research brings together experts in the fields of dementia, engineering, social science, social work, occupational therapy and ophthalmology. This interdisciplinary research team will work closely with the DeNDRoN ENRICH scheme and project advisors in the 3rd sector and industry specializing in dementia and vision loss (e.g. Thomas Pocklington Trust, Dementia and Sight Loss Interest Group, ARUP, CDRAKE) to improve the study and implement its findings.

Planned Impact

Patients and carers:
o Making available novel low-cost visual aids and adaptations to improve localization of places and objects around the home
o Providing practical tips and advice that may permit novel problem solving around the home.
o Consequent improvements in patient independence, safety and quality of life and associated reductions in caregiver burden.
o Benefit delivered directly via support groups (patient and carer support groups, consultation, newsletters and website; e.g. www.pcasupport.ucl.ac.uk), discussion forums (e.g. www.pcaforum.org), Facebook groups (e.g. Posterior Cortical Atrophy Awareness; Australia PCA Support), and indirectly by spreading best practice among clinicians working with people with PCA, AD and other dementias via project advisors (e.g. Canadian Dementia Resource and Knowledge Exchange [CDRAKE]).

Social science and policy:
o Reviewing and revising guidelines, policies and advice regarding dementia-related visual dysfunction in the home and care home environment.
o Highlighting the previously unresearched relationship between dementia-related visual impairment and quality of life.
o Improving the evidence base for the improving the interaction between people with dementia and their environment as a means to reducing health and social care costs.

Clinicians:
o Guidance as to the provision of individualized recommendations of aids most likely to benefit everyday functioning, by establishing the relationship between specific aids and an individual's profile of visual dysfunction as measured on brief bedside visual screening tests (e.g. Cortical Visual Screening Test; CORVIST).

Allied health professionals:
o The involvement of social workers and occupational therapists in the core study team will ensure that study outcomes are practical and feasible for use by colleagues in community-based dementia services, and will shape recommendations for necessary professional training developments.
o Facilitating patients' interactions with their visual environment will lead to improvements in physical health and nutrition. For example, simple changes in the colour of tableware (to compensate for reduced visual contrast sensitivity) have been shown to increase food and fluid consumption in advanced AD (Dunne et al., 2004).
o Improved visual awareness and perception of object and obstacle locations within the home (e.g. furniture, stairs) is likely to lead to increased mobility and safety, with fewer falls, accidents and consequent in-patient admissions.
o Improvements in patient mobility, safety and independence within the home will also delay admission to higher-intensity residential settings and reduce carer burden.

Care home industry including architects, engineers and care home managers:
o See 'Allied health professionals' above, plus:
o Providing evidence-based advice and information on the effectiveness and use of both novel and currently available visual aids, which may influence design and layout of new and existing residential care settings.
o The study team will provide 'Not seeing but believing'* training on dementia-related visual impairment to care home staff not just at the end but also at the outset of the study, via DeNDRoN's research ready care home network.
*cf 'Seeing is believing' visits cited in the York case study of dementia-friendly communities (Department of Health, 2012, p14) to share good practice between residential and nursing care specialists.

General public:
o Improving awareness of the global nature of cognitive decline in Alzheimer's disease and other causes of dementia.
o Increased understanding of difficulties potentially faced by relatives, friends, clients, customers, etc. with dementia.
o Information delivered via support group websites, discussion forums, Facebook groups (see 'Patients and carers' section above for details), and general interest Alzheimer's news groups (e.g. Alzforum; http://alzforum.org/new/detail.asp?id=3224).
 
Title Animation of visuoperceptual problems in PCA 
Description Simon Ball transformed an audio recording of a person with PCA viewing a scene of Brighton Pier to include a visual interpretation of the visuoperceptual problems they were experiencing. 
Type Of Art Film/Video/Animation 
Year Produced 2016 
Impact This has been presented at a PCA support group meeting (see URL) and was well received. Feedback suggested that the animation was felt to be an intuitive and creative insight to carers and the public, of what the world may look like to someone with PCA. 
URL https://www.youtube.com/watch?v=JUTXXwY70dU&index=1&list=PLQd2DImjcCRLKqiNHuW4hYScaqaQ0jlS4
 
Title Collaboration with visual artist Charles Harrison for ArtNeuro exhibition 
Description ArtNeuro Exhibition (Rag Factory, November 2014): collaboration with visual artist Charles Harrison, using animation and digital imagery to convey what the world might look like to someone with dementia-related visual impairment. 
Type Of Art Artwork 
Year Produced 2014 
Impact - ArtNeuro exhibition (Rag Factory, London, 6-9 November 2014) - Exhibit and talk at annual UCL Dementia research public event (6 November 2014) - Exhibit and talk at PCA Support Group meeting (7 November 2014) - Video documentary about the development of the collaboration (https://www.youtube.com/watch?v=18KEizrV_Go&feature=youtu.be) 
URL http://artneuro.co.uk/projects/charles-sebastian/
 
Title Consultant on Plaques and Tangles, Royal Court Theatre 
Description Plaques and Tangles is a play shown at the Royal Court Theatre between October - November 2015 by Nicola Wilson. It explored one women's life with early onset familial Alzheimer's disease. Professor Sebastian Crutch acted as a consultant for this project. 
Type Of Art Performance (Music, Dance, Drama, etc) 
Year Produced 2015 
Impact The play provided an opportunity for members of the public to glimpse what it might be like to experience life affected by familial Alzheimer's disease, we hope it prompted a dialogue of this rare condition and of dementia in general. 
URL http://www.telegraph.co.uk/theatre/what-to-see/plaques-and-tangles-royal-court-review/
 
Title Profiles in Paint - Visualizing cognition in dementia 
Description This was a collaboration with Charles Harrison, a visual artist, in which four individuals with different forms of dementia (PCA, behavioural variant FTD, semantic dementia, typical Alzheimer's disease) and healthy control artists (x4) created still life paintings of the same set of objects to illustrate the impact of different dementias upon different cognitive processes (e.g. perception, emotion, verbal knowledge). Continued collaboration with visual artist Charles Harrison, funded by a £5000 UCL Public Engagament pathways grant. January to July 2015. 
Type Of Art Artwork 
Year Produced 2015 
Impact Artwork to form part of physical and online exhibits. We have presented the paintings and findings from the project at a PCA support group meeting (Feb 2016, see URL) and the paintings will also be displayed on a website by architects Niall McLoughlin and Yeoryia Manolopoulou, who will be representing Ireland for the Venice Biennale, for which they have created a website designed to be accessible for people with a diagnosis of dementia. We will also be presenting this project at the Science Museum Lates (April 2016), a large scale one-off event at the Science Museum, London (http://www.sciencemuseum.org.uk/visitmuseum/plan_your_visit/lates). We will be submitting the paintings as part of an article to The Art of Medicine section of The Lancet, along with neuropsychological profiles and MRI scans of the 4 artists with dementia. 
URL http://www.charlesrobertharrison.com/#!painting/cgrq
 
Title Venice Biennale Irish exhibi 
Description Seeing what they see team members and participants are working with architects Niall McLaughlin and Yeoryia Manolopoulou as they explore people with dementia's experience of space and design, and the successes and failures of McLaughlin's Alzheimer's Respite Centre (https://www.bartlett.ucl.ac.uk/architecture/research/projects/respite-centre). 
Type Of Art Artistic/Creative Exhibition 
Year Produced 2016 
Impact As the Venice Architecture Biennale is an impressive, large-scale showcase of contemporary architecture, it is a unique opportunity to present to attendees the link between navigation and dementia: the project itself will explore the idea of the quality of life of people with dementia and how this may be impacted by their interactions with their environment. 
URL http://www.archdaily.com/777648/niall-mclaughlin-architects-selected-to-represent-ireland-at-2016-ve...
 
Description Study 1
• Development of tests to more reliably assess acuity (the ability to see small items) and crowding (the influence of 'visual clutter') in posterior cortical atrophy (PCA)/typical Alzheimer's disease (tAD).
• Eye movement abnormalities are near-ubiquitous in PCA, though both PCA and tAD patients show deficits in visual search and smooth pursuit.
• Salient features of scenes are more consistently fixated in PCA, with tAD patients showing an intermediate tendency to fixate areas of high salience
• Everyday abilities also undermined by problems in auditory scene analysis, motor and balance systems.
• Continued work to highlight visual impairment in a range of dementia syndromes.
• Majority of PCA patients exhibit excessive visual crowding.
• PCA reading adversely affected by increased letter spacing, size, length and font.
• Development and piloting of computer-based reading aid informed by work in crowding and acquired dyslexia in PCA.

Study 2
• Successfully devised aid to improve reading ability in PCA; patients' difficulties moving their eyes to each word circumvented by moving the words to the point of gaze. Mean reading accuracy was significantly higher with the aid (96%) than normal text (57%).
• Development of paradigms for quantitative assessment of navigating doorways, corridors, rooms, stairs, and locating objects, with simultaneous evaluation of speed, efficiency, gait, gaze position and route under varying conditions.
• PCA and tAD patients get lost even in simple environments with destination in view.
• Clear effects of the physical environment on patient performance (e.g. increasing route complexity in corridors task impacts negatively on PCA>tAD>controls; visual clutter impairs PCA navigation and object localisation performance).
• Effects of lighting are inconsistent (not as simple as 'higher lighting levels improve performance').
• Contrast cue improved door finding efficiency and accuracy in patients; increase in speed more apparent for moderate than mild patients (based on MMSE).
• Motion cue increased probability of fixating target destination, door finding accuracy in patients, and resulted in more direct routes to the target for tAD group ("locking on"?).
• Patient navigational ability is predicted by deficits in visual search and perceiving objects in clutter.
• Patient navigational ability can also be facilitated by the direction of local lighting and reduction of shadows across the path of walking, even if overall lighting levels remain unchanged.

Study 3
• First study evaluating impact of PCA and tAD on activities of daily living.
• Systematic reviews of stress and coping mechanisms and environment adaptations in AD.
• Description of existing individual and group interventions for PCA.
• Professional interviews with OTs, SWs, nursing home staff, sensory teams) revealed evidence of only generalised dementia training, PWD difficulties most often attributed to memory, and visual problems often attributed to poor eye health or described as a natural part of ageing.
• Prominent features of patient & carer individual and diad interviews included: difficulties with ADLs situated within complex psychosocial environment; maintenance of identity; dependence, independence and interdependence; isolation and social exclusion; previous losses (e.g. death of a child, occupation); other illnesses; relationship quality.
Exploitation Route We have built awareness of dementia-related visual impairment amongst the general public:
- Improved awareness that dementia may impact upon vision and not just memory e.g. through the >48,000 people who have participated in our Many Faces of Dementia massive open online course (MOOC) which includes a chapter on dementia-related visual impairments.
- Improved awareness of rare and young onset dementias such as posterior cortical atrophy (PCA).
- Created a number of public engagement events, and released a film called animated and sharing the experiences of people living with dementia-related visual impairment.

We have built awareness of the 'Seeing what they see' project amongst people with PCA and Alzheimer's disease and their carers:
- Dissemination of guidelines and advice to help address problems associated with dementia-related visual impairment around the home.
- Made available novel low-cost visual aids and adaptations to improve localization of places and objects around the home.
- Dissemination of research findings on how to improve patient independence, safety and quality of life and associated reductions in caregiver burden through our patient and carer support group meetings, in newsletters, on support group websites (http://raredementiasupport.org/pca/), via Facebook groups (e.g. Posterior Cortical Atrophy Awareness; Australia PCA Support) and via @DementiaVision Twitter feed.
- Dissemination of research findings via project partners (e.g. Thomas Pocklington Trust, Canada Dementia Resource and Knowledge Exchange) and other care organisations.

Built awareness of the 'Seeing what they see' project amongst academics, clinicians and allied health professionals:
- Provided guidance and formal training course modules regarding the identification of dementia-related visual dysfunction and implementation of research findings.
- Presented research findings at local, national and international academic and professional conferences, and published in high-quality journals.
- Led a joint UCL and Vision UK conference on Dementia and Sight Loss at Wellcome on 22 June 2018, with plans for a follow up event in one year.
- Currently creating a dedicated website with resources for professionals including test material and videos of talks from the Dementia and Sight Loss conference.

Influence policymakers and those planning and managing care services to improve diagnosis, care and support for people with dementia-related visual impairment:
- Reviewing and revising guidelines, policies and advice regarding dementia-related visual dysfunction in the home and care home environment.
- Highlighting the previously unresearched relationship between dementia-related visual impairment and quality of life.
- Improving the evidence base for the improving the interaction between people with dementia and their environment as a means to reducing health and social care costs.

Care home industry including architects, engineers and care home managers:
- We are regularly communicating the needs of people with dementia-related visual impairment to those involved in the design, construction and management of public spaces, residential care and nursing facilities (e.g. most recently advising Morrisons supermarkets on store design for people with dementia and sight loss).
Sectors Communities and Social Services/Policy,Education,Healthcare,Retail,Transport,Other

URL http://www.ucl.ac.uk/dementia-vision
 
Description To date, the findings have been used to: - communicate to other academics and clinicians the nature of visual impairment in PCA and other forms of dementia - develop a online training tool explaining the nature and impact of dementia-related visual impairment - develop an online training tool for Occupational Therapists about dementia and vision, in partnership with the College of Optometrists - host the first UK dementia and vision conference, which has led to links with new partners and professions e.g. ROVIs - test the usefulness of visual cues to help people with dementia-related visual impairment to find locations, objects and doors when walking and searching - to create artworks which communicate to the public the nature of the visual experience in PCA - educate the project team and affiliated PhD students about the atypical PCA syndrome - data from the study have been included in local, national and international talks by members of the project team - to provide guidance and gather feedback from patients and carers participating in PCA Support Group meetings
First Year Of Impact 2014
Sector Communities and Social Services/Policy,Healthcare
Impact Types Cultural,Policy & public services

 
Description Dementia and Sight Loss Interest Group (DaSLIG)
Geographic Reach National 
Policy Influence Type Membership of a guideline committee
Impact Comprises Royal National Institute of Blind People (RNIB), Alzheimer's Society, Thomas Pocklington Trust, Arup, Macular Disease Society and a number healthcare professionals and service users. • Development and promotion of a better understanding of the issues facing people affected by dementia and sight loss by presenting at events and seeking publications in relevant journals. • Collation, development and sharing of information and good practice via the DaSLIG microsite on Vision2020 UK and other opportunities as they arise. • Share experience, knowledge, systems and resources which improve our organisations ability to provide information on dementia and sight loss to enquirers. • Support and influence initiatives around dementia and sight loss, such as through joint working on product development
URL https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1946
 
Description Health Building Note
Geographic Reach National 
Policy Influence Type Participation in a national consultation
Impact Design principles for dementia-friendly environments in new healthcare buildings, and in the adaptation or extension of existing facilities
URL https://www.gov.uk/government/publications/dementia-friendly-health-and-social-care-environments-hbn...
 
Description House of Lords young onset dementia awareness raising event
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
 
Description JPND committee on cognitive assessments
Geographic Reach Asia 
Policy Influence Type Membership of a guideline committee
 
Description Membership of British Psychological Society Dementia Advisory Group
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
 
Description Presentation at and participation in Vision Impairment and Dementia Summit (College of Optometrists; February 2015).
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact This event explored particular issues for people with concurrent dementia and visual impairment or sight loss. The event helped develop collaborative work between the college of optometrists and the Dementia Research Centre, and raised awareness about PCA and corticovisual impairment arising as a consequence of Alzheimer's disease. • Brought together two James Lind Alliance Priority Setting Partnerships (dementia and vision) to identify five priorities for dementia and vision research: o appropriate methods of visual assessment o how to maintain independence o the timing of cataract intervention o how to effectively change practice with research o routes to early dementia diagnosis • The discussions also revealed some key underlying themes in the participants' thinking: o the extent to which these two conditions are uniquely concurrent, or not, compared to other co-morbidities o the importance of linking communities of research and health care together, both within each community and with each other o that listening to patients and carers is crucial to the progression of effective research. • Summit demonstrated the usefulness of such an exercise and its viability for the prioritisation of research into other health co-morbidities. • The priorities will be disseminated widely and integrated into the processes used by research funders to evaluate funding applications, and through which research teams identify future projects, to ensure funding is directed to the areas of most use for people living with dementia and visual impairment.
URL http://www.college-optometrists.org/en/college/news/index.cfm/Visual_Impairment_Dementia_Summit
 
Description Presentations at professional training events (College of Optometrists January/June 2016 and 100% Optical events February 2015/2016)
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact Presentations at multiple events in 2015-2016 organised by the College of Optometrists and 100% Optical highlighting PCA, corticovisual impairment in neurodegenerative conditions and outlining issues when assessing visual function in people with dementia. Raising awareness of PCA among optometrists was identified as a key priority for patients based on feedback from PCA support groups. A total of 6,400 people attended the first 100% Optical event. Learning objectives for the seminar 'Dementia- understanding the needs of patients in a clinical setting' were as follows: 1. Understand key facts about dementia: signs, symptoms and prevalence. 2. Gain insight into the experience of a person with dementia trying to access care. 3. Understand the particular needs of patients with unusual forms of dementia, particularly the cortical visual impairments in posterior cortical atrophy. 4. Reflect on methods to adapt assessments to support the individual's unique abilities and needs Over 90% of those who rated the session reported it meeting the learning objectives.
 
Description Royal College of Occupational Therapists CPD course "Understanding and supporting people with dementia-related visual impairment"
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact We developed a CPD course with the Royal College of Occupational Therapists on "Understanding and supporting people with dementia-related visual impairment". An article in OTnews was published on this course. Here are some figures and quotes following the first month of the course. 1. 360 downloads of CPD short course in the first month 2. Two HEI's are considering using the CPD short course as module content for the academic year 18/19 3. "The video and animation has increased my insight, empathy and understanding of the living with PCA." (Participant feedback) 4. "The learning resources have helped to increase my knowledge of the signs and symptoms so I will be able to signpost quicker to relevant services." (Participant feedback)
 
Description Workshop on dementia related visual impairment at COTEC - ENOTHE Congress (Galway, June 2016)
Geographic Reach Europe 
Policy Influence Type Influenced training of practitioners or researchers
 
Description "Am I the right way up?": Investigating balance problems in posterior cortical atrophy
Amount £278,850 (GBP)
Organisation Alzheimer’s Society 
Sector Charity/Non Profit
Country United Kingdom
Start 06/2015 
End 05/2018
 
Description ARUK UCL Network Travel Fund
Amount £500 (GBP)
Organisation Alzheimer's Research UK 
Sector Charity/Non Profit
Country United Kingdom
Start 03/2017 
End 07/2017
 
Description Alzheimer's Research UK UCL Network Pump-Priming/equipment
Amount £4,689 (GBP)
Organisation Alzheimer's Research UK 
Sector Charity/Non Profit
Country United Kingdom
Start 03/2018 
End 03/2019
 
Description Alzheimer's Research UK: Rare Dementia Support
Amount £23,000 (GBP)
Organisation Alzheimer's Research UK 
Sector Charity/Non Profit
Country United Kingdom
Start 03/2016 
End 03/2017
 
Description Alzheimer's Society Fellowship
Amount £199,977 (GBP)
Funding ID AS-JF-18-003 
Organisation Alzheimer’s Society 
Sector Charity/Non Profit
Country United Kingdom
Start 01/2019 
End 12/2021
 
Description Brunel University London Student Public Engagement Fund
Amount £700 (GBP)
Organisation Brunel University London 
Sector Academic/University
Country United Kingdom
Start 04/2016 
End 04/2018
 
Description Dunhill Medical Trust research grant
Amount £164,206 (GBP)
Funding ID R337/0214 
Organisation The Dunhill Medical Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 09/2014 
End 08/2017
 
Description EPSRC Sensing and Imaging for Diagnosis of Dementia
Amount £1,787,505 (GBP)
Funding ID EP/M006093/1 
Organisation Engineering and Physical Sciences Research Council (EPSRC) 
Sector Academic/University
Country United Kingdom
Start 01/2015 
End 12/2017
 
Description National Brain Appeal award for a portable Eyelink 1000 desk-mounted eyetracker to support home-based patient eyetracking assessments
Amount £27,000 (GBP)
Organisation National Brain Appeal 
Sector Charity/Non Profit
Country United Kingdom
Start 03/2016 
End 05/2016
 
Description Social Science Plus grant
Amount £10,000 (GBP)
Organisation University College London 
Sector Academic/University
Country United Kingdom
Start 11/2016 
End 11/2019
 
Description The impact of multicomponent support groups for those living with rare dementias
Amount £3,553,977 (GBP)
Funding ID ES/S010467/1 
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 01/2019 
End 12/2023
 
Description UCL Bloomsbury Festival grant
Amount £500 (GBP)
Organisation University College London 
Sector Academic/University
Country United Kingdom
Start 07/2016 
End 10/2016
 
Description UCL Public Engagement Pathways: 'Profiles in Paint'
Amount £5,000 (GBP)
Organisation Engineering and Physical Sciences Research Council (EPSRC) 
Sector Academic/University
Country United Kingdom
Start 01/2015 
End 09/2015
 
Description UCL's Collaborative Social Science Domain and Social Science Plus+
Amount £4,000 (GBP)
Organisation University College London 
Sector Academic/University
Country United Kingdom
Start 12/2016 
End 07/2017
 
Description Wellcome Trust Hub award
Amount £1,087,059 (GBP)
Funding ID 200783/Z/16/Z 
Organisation Wellcome Trust 
Sector Charity/Non Profit
Country United Kingdom
Start 10/2016 
End 07/2018
 
Title A clinical test for visual crowding 
Description A measure of foveal crowding developed for clinical use in patients with neurodegenerative conditions as well as children. Current tests are not well suited to routine clinical testing as they are time-consuming, susceptible to fixation instability, a common symptom in PCA, and are mostly not applicable in the fovea. The new test was developed in collaboration with Prof Denis Pelli, NYU. 
Type Of Material Model of mechanisms or symptoms - human 
Provided To Others? No  
Impact A summary of this test has been published in F1000Research. 
URL http://f1000research.com/articles/5-81/v1
 
Title PAMELA experimental paradigms for multimodal assessment of navigation and object localisation 
Description Five PAMELA paradigms have been developed for quantitative assessment and analysis of navigation in controlled simulated real-world environments. Paradigms concurrently track participants' physical location, gait and fixation position using inertial measurement unit and eyetracking data. We are in discussion with Prof Anette Schrag (UCL Department of Clinical Neuroscience) regarding a grant application using these paradigms to measure the impact of sensory and physical aids designed to reduce the likelihood of falls in individuals with Parkinson's disease. 
Type Of Material Physiological assessment or outcome measure 
Year Produced 2016 
Provided To Others? Yes  
Impact PAMELA paradigms have been presented at multiple international conferences (Alzheimer's Association International Conference, 2015; International Conference of the IEEE Engineering in Medicine and Biology Society, 2015; IET International Conference on Technologies for Active and Assisted Living, 2015; International Commission on Illumination, 2015) and have featured in various public engagement events aimed both at patients and carers, including study participants, as well as professionals working with people with dementia. 
 
Description Atypical Alzheimer's Disease and Associated Syndromes Professional Interest Area 
Organisation Alzheimer's Association
Country United States 
Sector Charity/Non Profit 
PI Contribution Set-up and chair the ISTAART Atypical AD PIA.
Collaborator Contribution Opinion on revising PCA diagnostic criteria and genetic samples for PCA GWAS study.
Impact Crutch SJ1, Schott JM, Rabinovici GD, Boeve BF, Cappa SF, Dickerson BC, Dubois B, Graff-Radford NR, Krolak-Salmon P, Lehmann M, Mendez MF, Pijnenburg Y, Ryan NS, Scheltens P, Shakespeare T, Tang-Wai DF, van der Flier WM, Bain L, Carrillo MC, Fox NC. Shining a light on posterior cortical atrophy. Alzheimers & Dementia 2013 Jul;9(4):463-5. doi: 10.1016/j.jalz.2012.11.004..
Start Year 2012
 
Description College of Optometrists 
Organisation Van Alen institute
Department Research Department
Country United States 
Sector Charity/Non Profit 
PI Contribution Our aim is to improve assessment and management of ocular and dementia-related cortical visual impairment in individuals living with dementia. We will translate our recent neuropsychological, oculomotor and imaging research on Alzheimer's disease and the syndrome posterior cortical atrophy (e.g. excessive crowding [Yong et al., Brain, 2014; http://www.ncbi.nlm.nih.gov/pubmed/25351740], disordered oculomotor function [Shakespeare et al., 2015; http://www.ncbi.nlm.nih.gov/pubmed/25895507], greater difficulty seeing large than small letters and text [Yong et al., 2014; http://www.ncbi.nlm.nih.gov/pubmed/24841985]) into: a) Changes in policy and practice (multidisciplinary guidance on visual assessment in dementia, through recent and planned collaborations with the College of Optometrists and Vision 2020 Dementia and Sight Loss Interest Group [https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1946] following identification of improved assessment of dementia-related visual assessment as the top priority at the Vision and Dementia Summit 2015. b) Changing the training and practice of optometrists, ophthalmologists and other professionals (through our upcoming Dementia MOOC [https://www.futurelearn.com/courses/faces-of-dementia/], developing tailored versions of the MOOC material for profession-specific CPD registered training, training events). c) Dissemination of new/adapted visual assessments suitable for individuals with different forms of dementia (e.g. Pelli et al., 2016; http://f1000research.com/articles/5-81/v1).
Collaborator Contribution The direct financial contribution relating to this collaboration comes from a UCL Knowledge Exchange Champions award (https://www.ucl.ac.uk/enterprise/funding/ke_champions), a scheme funded by HEFCE's Higher Education Innovation Fund (HEIF). The in-kind contribution relates to College of Optometrists staff time to organising and running the Which test is best? assessment and discussion days, and subsequent work to develop professional training packages for optometrists and ophthalmologists regarding assessment of optical and cortical vision in individuals living with dementia.
Impact Ongoing collaboration. Outputs and outcomes (as described above) to be delivered by end of July 2016.
Start Year 2015
 
Description 'Losing control is my greatest fear' (Daily Telegraph) featuring Seb Crutch and patient Paul Bulmer 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Following the death of Terry Pratchett from the same condition (PCA) this article detailed Paul Bulmer's experience of living with a diagnosis of PCA and that of his family. Prof Crutch offered insights into the neuropsychology of the condition and the status of current research. The article stressed the importance of on-going and future research in this area.
Year(s) Of Engagement Activity 2015
URL http://www.telegraph.co.uk/lifestyle/wellbeing/healthadvice/11467655/Losing-control-is-my-greatest-f...
 
Description 100% Optical event 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? Yes
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact 3-day conference held for professionals in optometry at Excel London. We were grateful and privileged to jointly present with the UCL Dementia Research Centre. This collaboration allowed us to not only raise dementia awareness but to educate on the visual variant of dementia - posterior cortical atrophy - and the symptoms that it causes. The presentations received much engagement from attendees and the Association of Optometrists (AOP) intend to use the seminars delivered as an e-learning module for their members.

Additional engagement has been initiated between the College of Optometry, UCLPartners and UCL Dementia Research centre. This network is working to review the training across the College and develop enhanced resources in the future.
Year(s) Of Engagement Activity 2015
URL http://us5.campaign-archive2.com/?u=2e0a19342aff8406443a8d993&id=4c3954c548
 
Description 2017 Dementia MRI conference, Cardiff, Wales - invited lecture 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Other audiences
Results and Impact Invited lecture on 'Seeing what they see: neuropsychological and neuroimaging investigations of posterior cortical atrophy (PCA)'
Year(s) Of Engagement Activity 2017
URL https://www.cardiff.ac.uk/conferences/2017-dementia-mri-conference/programme
 
Description 2017 International Conference On Mobile Brain-Body Imaging And The Neuroscience Of Art, Innovation And Creativity, Valencia, Spain - invited lecture 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact Lecture on 'Created Out of Mind: Shaping perceptions of dementia through art and science'
Year(s) Of Engagement Activity 2017
URL http://yourbrainonart2017.egr.uh.edu/schedule
 
Description 2018 International Congress on Space and Dementia, Taiwan - invited participant and speaker 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Two invited lectures and case discussions in Taipei and Tainan on 'Seeing what they see: cognitive, neuroimaging, genetic and engineering perspectives on posterior cortical atrophy (PCA)'
Year(s) Of Engagement Activity 2017
URL http://www.tds.org.tw/files/common_unit/dcea051a-867b-4793-a0df-904da30b3e88/doc/2018%20Internationa...
 
Description A Showcase of Dementia Research at UCL (May 2014) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact This event was held to showcase and celebrate recent ESRC and NIHR grant awards at UCL. Professor Sebastian Crutch presented information on the 'Seeing What They See' study.
Year(s) Of Engagement Activity 2014
 
Description A walk through dementia Virtual Reality (VR) experience 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Scientific advisor to Alzheimer's Research UK's 'A walk through dementia' virtual reality experience, a unique Android-exclusive Google Cardboard app designed to put you in the shoes of someone living with dementia.
Year(s) Of Engagement Activity 2016
URL http://awalkthroughdementia.org/
 
Description AAIC (2017) London - EFFECTS OF GROUND LIGHTING UNIFORMITY AND CLUTTER ON NAVIGATIONAL ABILITY IN POSTERIOR CORTICAL ATROPHY AND TYPICAL ALZHEIMER'S DISEASE 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Effects of corticovisual impairment on navigational ability in posterior cortical atrophy and typical Alzheimer's disease; talk sparked discussion and questions among academic colleagues from a range of disciplines.
Year(s) Of Engagement Activity 2017
 
Description AAIC 2014 talk Copenhagen 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Type Of Presentation paper presentation
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Atypical AD Professional Interest Area (PIA) meeting in particular prompted lots of interest in PCA and other forms of atypical AD, contributed to ongoing project to revise criteria for PCA and brought in new PIA members.

PCA diagnostic criteria paper in preparation.
Year(s) Of Engagement Activity 2014
 
Description AAIC 2015 (Washington) - Effects of corticovisual impairment on navigational ability in posterior cortical atrophy and typical Alzheimer's disease 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Effects of corticovisual impairment on navigational ability in posterior cortical atrophy and typical Alzheimer's disease; talk sparked discussion and questions among academic colleagues from a range of disciplines.
Year(s) Of Engagement Activity 2015
 
Description AAIC 2016 (Toronto) - Effects of Dementia-Related Visual Impairment on Route Following in Posterior Cortical Atrophy and Typical Alzheimer's Disease 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Effects of Dementia-Related Visual Impairment on Route Following in Posterior Cortical Atrophy and Typical Alzheimer's Disease; talk sparked questions and discussion.
Year(s) Of Engagement Activity 2016
 
Description AAIC 2016 (Toronto) - Object localisation deficits in posterior cortical atrophy and typical Alzheimer's disease: tracking position, movement and fixation patterns within a simulated real-world setting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Object localisation deficits in posterior cortical atrophy and typical Alzheimer's disease: tracking position, movement and fixation patterns within a simulated real-world setting; talk sparked comments and questions from academics working within a range of disciplines.
Year(s) Of Engagement Activity 2016
 
Description AAIC 2016 (Toronto) Living with Posterior Cortical Atrophy "One Day at a Time" 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Talk delivered on the daily impact of living with posterior cortical atrophy which is characterised by visual processing problems. Talk sparked questions form the audience who were from a range of academic disciplines investigating the dementias.
Year(s) Of Engagement Activity 2016
 
Description AAIC atypical AD PIA on Facilitating reading (July 2015) 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact This PIA brings together a multi-disciplinary group of professionals from international clinical and research centers of excellence with experience and interest in atypical presentations of Alzheimer's disease and associated syndromes. Keir Yong presented recent work entitled "Facilitating Reading in PCA".
Year(s) Of Engagement Activity 2015
 
Description AHRC TECHNE student conference 2016 - Memory & Perception: Integrating multiple accounts in dementia research 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Postgraduate students
Results and Impact Research Assistant and PhD student (EH) presented findings from in-depth interviews with couples and individuals experiencing visual impairment as a result of their dementia. Her talk centred around methodological issues and served as an opportunity for her to practice communicating Seeing What They See study findings to audiences made up of a broad range of disciplines. Main outcomes were in developing the communication and presentation skills of the project team member.
Year(s) Of Engagement Activity 2016
 
Description Alzheimer's Society Bromley office presentations 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact Presentations on the Seeing what they see project to a mixture of day centre staff, service users and their relatives. These took place at: - Alzheimer's Society Bromley Office (Apr 2016/ Aug 2016)
Year(s) Of Engagement Activity 2016
 
Description Arts Council Northern Ireland invited lecture at 'The Art of Dementia' conference 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact From conference programme:

The Arts & Age Conference 2018 aims
to highlight the benefits of the arts
to the health and wellbeing of older
people through the Arts & Older People
Programme, which is supported by the
Arts Council of Northern Ireland National
Lottery fund, The Baring Foundation and
the Public Health Agency.
Join us as we hear from speakers who
will reveal, through their own work, the
benefits of participating in arts activities for
people with dementia. Contributors to the
event include Sebastian Crutch, who is a
leading expert on rare forms of dementia.
His research is directed at improving our
understanding of different types of the
condition. He is also the Director of 'Created
Out of Mind', a movement that opens up
new conversations with the public that
help shape perceptions of dementias and
the arts.
Other contributors will be reflective of the
difference the arts have made within their
own practices. There will be interactive
workshops to facilitate healthy discussion
around the experience of those delivering
art workshops and what it means for the
participants.
The conference is aimed at policy makers,
health agencies, artists, arts organisations
and those working in the fields of arts and
older people. It offers an opportunity to
promote the benefits of creativity to the
health and wellbeing of our older citizens
Year(s) Of Engagement Activity 2018
URL http://www.artscouncil-ni.org/images/uploads/publications-documents/ACNI-Arts-and-Age-2018-Programme...
 
Description Asian Societies Against Dementia (ASAD) conference, Bangkok, Thailand - invited plenary lecture 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Asian Societies Against Dementia (ASAD) conference invited plenary lecture on 'New horizons in
posterior cortical atrophy (PCA)' and second lecture on 'Visual processing and object recognition'
Year(s) Of Engagement Activity 2017
URL https://www.ipa-online.org/news-and-issues/asad-meeting-review
 
Description Assistive technology and dementia MSc presentation at UCL Interaction Centre 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Postgraduate students
Results and Impact Presentation on clinical heterogeneity of Alzheimer's disease, barriers to device accessibility, and current themes in the development of assistive technology for people with neurodegenerative conditions to students on the MSc Human-Computer Interaction course.
Year(s) Of Engagement Activity 2017
 
Description BakeTell tarts public engagement workshop as part of Norwich Theatre Royal theatre cares programme 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact People living with dementia and their family/professional carers attended for a hands on workshop about messages and issues they'd like to raise awareness of. Discussions about meaningful outcomes and accessibility/barriers to services and professionals education and training were discussed.
Year(s) Of Engagement Activity 2019
URL https://twitter.com/baketell_tarts
 
Description Bloomsbury Festival grant (UCL Hub) - Seeing Stories and Stories About Seeing 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact As part of the Bloomsbury Festival EH applied for a UCL student award of £500 to engage visitors to the festival with some of the Seeing What They See findings. Quotes from interviews were displayed via artworks and on handmade Bakewell tarts which visitors were invited to take away with them. The messages described visually related symptoms people with typical Alzheimer's disease and Posterior Cortical Atrophy were experiencing and visitors were inited to read and respond to the stories and to ask questions of EH and RW who were facilitating the event. Feedback was collected and the engaging nature of the real-world stories and surprise at the visual nature of the symptoms despite the diagnosis being one of dementia were reported.
Year(s) Of Engagement Activity 2016
URL http://bloomsburyfestival.org.uk
 
Description Border Crossings 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Media (as a channel to the public)
Results and Impact This 'speed-dating' initiative from Open City Docs Fest, allowed UCL researchers to pair up with professional documentary filmmakers to work towards a full scale research-based film. It was through this initiative that ties were made with Simon Ball, an animator, who has consequently worked with the team on various further projects.
Year(s) Of Engagement Activity 2014
 
Description British Council organised keynote and workshop on Creative Ageing - Museum Engagement & Learning, Taichung, Taiwan, November 2018 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact - keynote presentation and a workshop at National Museum of Natural History in Taichung City, Taiwan.
- pre-program visit to museum exhibition for an understanding of local context
- Conference (keynote & panel discussion)
- Workshop
Year(s) Of Engagement Activity 2018
URL https://www.britishcouncil.org.tw/en/event/2018CreativeAgeing
 
Description British Neuropsychological Society talk 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Talk on quantity processing deficits in PCA elicited questions about the representation of number, quantity and verbal knowledge.

Feedback contributed to drafting of resulting research paper (in submission).
Year(s) Of Engagement Activity 2014
URL http://www.the-bns.org/resources/2014_autumn_programme.pdf
 
Description British Society of Gerontology 44th annual conference - oral presentation "I feel trapped here": Living with Posterior Cortical Atrophy 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Talk sparked conversation and discussion among practitioners and fellow researchers in ageing - particularly around the nature of cortical visual dysfunction and the impact on everyday life, increasing awareness of rarer dementias and the varied symptom profiles which can be associated with it.
Year(s) Of Engagement Activity 2016
 
Description British Society of Gerontology Early Researcher's in Ageing (ERA) pre-conference 2016 - Oral Presentation: Loneliness in rarer and young onset dementias 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Postgraduate students
Results and Impact Talk sparked reflective discussions and questions from other early career researchers - some of whom work specifically in dementia - around the lesser known visuo-perceptual and visuo-spatial symptoms associated with Posterior Cortical Atrophy. Main outcome was in raising awareness among practitioners and academics of rarer kinds or causes of dementia.
Year(s) Of Engagement Activity 2016
 
Description Care home professionals 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Presentations on the project 'Seeing what they see; compensating for cortico visual dysfunction in Alzheimer's disease' to care home staff and other professionals working with people with dementia at two different forums:
- ENRICH Care Home Forum (Jan 2015)
- Margaret Butterworth Care Home Forum (May 2015)
The MBCHF provides an opportunity for staff, carers and others with an interest in this area to gather and discuss means of improving the quality of care and life for people with dementia living in care homes.
Year(s) Of Engagement Activity 2015
 
Description Care home residents and relatives meeting 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Presentations on the project 'Seeing what they see; compensating for cortico visual dysfunction in Alzheimer's disease' to a mixture of care home staff, care home residents and their relatives.

These took place at:
- Lennox House (Dec 2014)
- Highbury New Park (April 2015)
- Hornchurch BUPA (Feb 2015)
Year(s) Of Engagement Activity 2014,2015
 
Description Carers' meeting: Alzheimer's Society Café 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Presentations on the project 'Seeing what they see; compensating for cortico visual dysfunction in Alzheimer's disease' and 'Dining with Dementia' to carers of people with dementia on two separate occasions:
- Dec 2015
- Jan 2016
Year(s) Of Engagement Activity 2015,2016
 
Description Challenge on Dementia 2020: Putting Words Into Action 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Attendees from across health and social care, both clinical and non-clinical staff, attended this event organised by UCL Partners. The conference focused on the Prime Minister's challenge (PMC), what progress has been made since it was published and what we can learn from other innovations across the UK. The Seeing what they See study was presented through table presentations within the event.
Year(s) Of Engagement Activity 2016
URL http://uclpartners.com/events/challenge-on-dementia-2020-putting-words-into-action/
 
Description Club de Neuro-Ophtalmologie Francophone (CNOF) conference, Lyon, France - invited plenary lecture 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Invited plenary lecture on 'Atrophie Corticale Postérieure'
Year(s) Of Engagement Activity 2018
URL http://www.neuro-ophtalmologie-club.org/wp-content/uploads/2018/01/PROGRAMME_FINAL_CNOF_1701.pdf
 
Description Created out of Mind collaborator day 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Presented the Seeing what they see project (preparatory study 2/3) at the Wellcome Hub, including an overview of years 3 & 4 study protocols.
Year(s) Of Engagement Activity 2017
 
Description Created out of mind teatime talk: Seeing what they see PAMELA study 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Presented the Seeing what they see PAMELA investigations and their implications for design of future work as part of the Created out of Mind project.
Year(s) Of Engagement Activity 2017
 
Description Creating a Dementia Inclusive Wales conference, Llandudno, Wales - invited lecture 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Invited lecture on 'Differences explored: Understanding the different dementias and the different responses we all have to different forms of art'
Year(s) Of Engagement Activity 2018
URL https://www.bangor.ac.uk/healthcaresciences/news/creating-a-dementia-inclusive-wales-35860
 
Description Creative Adventures in Dementia: A Life More Ordinary festival, Dukes Theatre, Lancaster, May 2018 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Presented a talk on different dementias, and was part of a panel discussion with journalist Nicci Gerrard, writer Wendy Mitchell and actor John Middleton.

A unique 2 day exploration of how the arts are touching the lives of people living with dementia in wonderful and remarkable ways.

'A Life More Ordinary' invites people living with dementia, family friends, health and care professionals, artists, researchers and, clinical commissioning teams, to share and discover some of the ground-breaking ways that the arts help us understand dementia better and play an invaluable part in how we journey through life together.

This event will include keynote speakers, performances and workshops by some of the most pioneering artists, practitioners, researchers and extraordinary people, working with people with dementia, in a variety of settings and in unique ways.

Please join us to explore, share and discover how the arts are revealing new ways of entering the world of people living with dementia and helping them to continue enjoying, richer fuller lives.

A Life More Ordinary is a 3 year project led by The Dukes, which aims to improve the lives of people with dementia and memory loss and their friends and families, by providing fun creative activities and film screenings in an adapted environment.
Year(s) Of Engagement Activity 2018
URL https://dukes-lancaster.org/?event=creative-adventures-dementia-life-ordinary-festival
 
Description Dementia Awareness Week seminar - Extending Representations of Dementia 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact The three talks given by colleagues sparked many questions from the audience, many of whom were members of the Brunel Older People's Reference Group (BORG) or academic colleagues from other disciplines. An interview with a patient/carer couple also prompted many questions from the audience and discussions across the group and was recorded for use as a teaching tool. Overall the day created a lot of interest around rarer dementias.

Many members of the audience expressed increased understanding about rarer forms of dementia and the usefulness of both the video clips and the patient/carer interview in bringing the subject matter to life. Members of the public, academics and those in professional practice also shared their experiences of similar challenging situations and various support strategies.
Interdisciplinary colleagues expressed interest in gaining further information or becoming further involved with the team's cur
Year(s) Of Engagement Activity 2015
URL http://www.brunel.ac.uk/environment/events/ne_421665
 
Description Dementia Awareness talk given to Brunel University London MA Social Work students 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Postgraduate students
Results and Impact Delivered a workshop to MA Social Work students on dementia with particular focus on rarer types (e.g. PCA) and lesser known symptoms such as visuo-spatial or visuo-perceptual problems. 30 students attended who had a range of personal and professional experience with dementia. The session encouraged them to reflect on their own assumptions about the capability of people with dementia and factors which may influence how they wish to be supported. Examples of individuals accounts of how their dementia related visual impairments affected them were shared and the group discussed these in the context of their own experience. They remarked on how quickly they had made assumptions and their surprise at how difficulties arising from dementia-related visual impairment could be interpreted as memory problems.
Year(s) Of Engagement Activity 2017
 
Description Dementia Friends training 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Three team members have trained as Dementia Champions and have been delivering Dementia Friends sessions to staff and students at Brunel University London and UCL, as well as to local government councillors. The one hour information sessions highlight the lesser known forms of dementia and the perceptual problems which were expanded on in the context of the 'Seeing What They See' project. The sessions stimulated much discussion around lesser known forms of dementia and triggered many 'a-ha' moments from participants who could relate the messages to their personal or professional experiences of dementia.
Year(s) Of Engagement Activity 2015
URL http://www.brunel.ac.uk/chls/news-events/news/ne_460350
 
Description Dementia Friends training at Wellcome Collection 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Industry/Business
Results and Impact Delivering Dementia Friends sessions to staff at Wellcome Trust and Wellcome Collection via connections with Created Out of Mind residency. The one hour information sessions highlight the lesser known forms of dementia and the perceptual problems which were expanded on in the context of the 'Seeing What They See' project. The sessions stimulated much discussion around lesser known forms of dementia and triggered many 'a-ha' moments from participants who could relate the messages to their personal or professional experiences of dementia. Key groups engaged with include security and visitor experience teams.
Year(s) Of Engagement Activity 2016,2017
URL https://www.dementiafriends.org.uk
 
Description Dementia Friends training at Wellcome Collection (continued) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Third sector organisations
Results and Impact Delivering Dementia Friends sessions to staff at Wellcome Trust and Wellcome Collection via connections with Created Out of Mind residency. The one hour information sessions highlight the lesser known forms of dementia and the perceptual problems which were expanded on in the context of the 'Seeing What They See' project. The sessions stimulated much discussion around lesser known forms of dementia and triggered many 'a-ha' moments from participants who could relate the messages to their personal or professional experiences of dementia. Key groups engaged with include security and visitor experience teams.
Year(s) Of Engagement Activity 2018
URL https://www.dementiafriends.org.uk/
 
Description Dementia MSc lecture "Progressive cortical disorders of vision" 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact This was a UCL MSc lecture including the following learning objectives:

• Appreciate the visual problems experienced by people with Alzheimer's disease and their implications for patient function
• Appreciate the main features of posterior cortical atrophy (PCA), the so-called 'visual variant' of Alzheimer's
• To understand how visual problems may arise from patterns of brain dysfunction and degeneration in these conditions
• To understand principles and challenges regarding management of visual disorders in dementia
Year(s) Of Engagement Activity 2018
 
Description Dementia Research Centre Newsletter 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Study participants or study members
Results and Impact The Seeing What They See study was featured in the Dementia Research Centre newsletter.
Year(s) Of Engagement Activity 2016
 
Description Dementia and Sight Loss day at Sight Village 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact The Seeing what they see study was presented at the Vision2020 Dementia and sight loss day by Keir Yong, who also participated in a panel discussion.

Event summary

There are 850,000 people with dementia in the UK and 7 out of 10 of those are living with another medical condition or disability. Sight loss is a particularly devastating condition for anyone, especially for those with concurrent dementia. It is not difficult to comprehend that there are specific difficulties for people who have both dementia and sight loss combined.

The awareness of the problems faced by those affected by vision or visual perception conditions and dementia is very low and this half day session is designed to help you understand the issues and clinical standards.

Better understanding of the prevalence of dementia and sight loss and issues with vision faced by people living with dementia will enable us to give better care and improve the quality of life for this growing group within the population.

The sessions will be repeated in the morning and afternoon to allow for easier attendance, so you can choose to attend either a morning or afternoon session.

After each session there will be a panel discussion with all the experts from the day including VISION 2020 UK, the Royal College of Ophthalmologists, the College of Optometrists, Alzheimer's Society, RNIB, University College London and ABDO.
Year(s) Of Engagement Activity 2016
URL http://www.vision2020uk.org.uk/57233-2/
 
Description Dementia training session for social workers, Bangor, Wales, March 2018 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Half day dementia training session on the rarer dementia to an audience of 30-40 social workers, care home staff and support workers
Year(s) Of Engagement Activity 2018
 
Description ESRC Reimagining Loneliness seminar series - Talk at Brunel University London: Loneliness in rare and typical dementias 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Raising awareness among a range of students and academic staff about how dementia related visual impairment could contribute to experiences of social isolation, social exclusion and loneliness.
Year(s) Of Engagement Activity 2016
URL https://www.youtube.com/watch?v=6dgZ9qRUB2g
 
Description Eyes to the stars feet on the ground: Career development in visual Neurosciences conference, Jerusalem, Israel - invited lecture 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Postgraduate students
Results and Impact Invited lecture on 'Seeing what they see: cognitive, neuroimaging, genetic and engineering perspectives on posterior cortical atrophy (PCA)'
Year(s) Of Engagement Activity 2018
 
Description Facilitating Reading in Posterior Cortical Atrophy 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Media (as a channel to the public)
Results and Impact I gave an interview to RTS (Radio television Suisse) Ligne de Coeur channel. This is one of the channels of the Swiss National Radio in Lausanne, Switzerland. The interview was in French and I spoke about ReadClear: an application designed to facilitate reading in posterior cortical atrophy. I spoke about the study in general the reasons and evidence behind it and where people can download the application. As the radio was live I was able to receive comments from the audience appreciating the project and the work our team has done. We decided to do a broadcast in a French speaking country as the application is available in French as well as English and Spanish.
Year(s) Of Engagement Activity 2018
 
Description Facilitating Reading in Posterior Cortical Atrophy: PCA support group 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Myself and my college Dilek Ocal spoke at a Posterior Cortical Atrophy Support Group in July 2017. We talked about the Reading Application: ReadClear which we co-designed with the team and our participants. It was an occasion once again to hear their thoughts on the application and the trial.
Year(s) Of Engagement Activity 2017
 
Description Global disability innovation Hub 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Presented the Seeing what they see study at the Global Disability Innovation Hub Hackathon. The Hackathon involved discussion of how assistive technology might support people with a diagnosis of dementia. Partners involved UCL, Loughborough University and University of the Arts London.
Year(s) Of Engagement Activity 2016
URL https://www.disabilityinnovation.com/hackathons
 
Description Headspace creative ageing international conference, Dublin, April 2018 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact From conference programme:

HeadSpace2018 was a two-day celebration of scientific and creative investigation into brain health and dementia.

Held in Trinity College Dublin on April 27th & 28th 2018, we invited people to join us in conversations about caring communities, research and cultural solutions, that informed, engaged, entertained and inspired.

The brain is especially sensitive to external influence and aging. Poverty, housing and education have huge effects on health. As does access to healthcare, isolation, social connectedness and personal security. Its estimated these social determinants account for 50% of disease and mortality. We grow old in different ways. By 2041, 22% of the population with be 65 or older. Addressing this change is key to improving health but healthcare alone can't solve the issues. It needs creative thinking and collaborative effort. Champions across society and government. Many voices and communities contributing to new scientific discoveries, innovations and cultural change in this area is important. People joined us and to bring their lived and learnt experience to the forum.

Can we live longer, better? How do we change? What can we do, today? Where is innovation creating tomorrow's solutions?
Year(s) Of Engagement Activity 2018
URL http://www.creativeageinginternational.com/2018/04/24/headspace-2018-schedule/
 
Description Hosting first joint UCL and Vision UK conference on Dementia and Sight Loss 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The programme for the event was (see https://visionuk.org.uk/events/ucl-vision-uk-dementia-sight-loss-conference/):

UCL and Vision UK Dementia and Sight Loss Conference
Date: 22 Jun 2018
Time: 9:30 am - 4:15 pm

Categories: Conferences
Tags: Dementia, dementia and Sight loss, UCL, Wellcome collection, Wellcome trust
FREE tickets are now available to a conference that will consider the challenges faced by people who have dementia and are also visually impaired. The conference is aimed at professionals who work with people who have dementia, those who have dementia or know of someone who has dementia.

Multiple logos of all the contributing organisations

Jointly organised by the University College London and the Vision UK Dementia and Sight Loss Committee, the conference aims to raise awareness of problems faced by those affected by vision or visual perception conditions and dementia.

Full information is on our website here and the programme for the day is below.

(this is potentially subject to change)





Time Topic Speakers
09:30 - 10:00 Registration, refreshments and networking
10:00 - 10:10 Welcome Paul Ursell, The Royal College of Ophthalmologists
Professor Seb Crutch, UCL

Matt Broom, Vision UK

10:10 - 10:25 Dementia and Sight Loss Gemma Jolly, Alzheimer's Society
10:25 - 10:40 The neuropsychology of dementia-related visual impairment Professor Seb Crutch, UCL
10:40 - 10:50 Q&A
10:50 - 11:05 The social and psychological consequences of dementia-related visual impairment Emma Harding, UCL or Professor Mary Pat Sullivan UCL
11:05 - 11:15 Q&A
11:15 - 11:45 Refreshments
11:45 - 12:00 The College of Optometrists' Prevalence of Visual Impairment in Dementia (PrOVIDe) study Dr Michael Bowen, The College of Optometrists
12:00 - 12:15 Dementia and low vision Jennifer Brower, Association of British Dispensing Opticians
12:15 - 12:25 Q&A
12:25 - 12:40 Feedback on the professional focus groups conducted with Occupational Therapists and Social Care Workers about awareness of dementia-related visual impairment Dr Anne McIntyre, Brunel University London
12:40 - 12:55 Sight loss and Dementia Friendly Principles of practice - how we are preparing the workforce to recognise and meet the needs of people living with sight loss and dementia June Neil, RNIB
12:55 - 13:05 Q&A
13:05 - 13:10 Short film 'Do I see what you see?' Experiences of people with Posterior Cortical Atrophy (PCA) Simon Ball, UCL
13:10 - 13:15 Wellcome Collection exhibitions tbc
13:15 - 14:15 Lunch, networking and opportunity to visit Wellcome Collection exhibitions
14:15 - 14:35 Personal stories from a couple who have been involved in recent home-based trial of Amazon Echo voice-controlled devices tbc, Rare Dementia Support
tbc, Rare Dementia Support

Nick Firth, UCL

14:35 - 14:45 Q&A
14:45 - 15:00 'Computers and Assistive Technology, what's new?' Hector Minto, Microsoft
15:00 - 15:15 An update on the Pedestrian Accessibility & Movement Environment Laboratory (PAMELA) Dr Keir Yong, UCL
Ian McCarthy, UCL

15:15 - 15:25 Q&A
15:25 - 15:40 Qualitative research into dementia and glaucoma Dr Simon Read, Cardiff University
15:40 - 15:55 'Which Test is Best?' Martin Cordiner, The College of Optometrists
15:55 - 16:05 Q&A
16:05 - 16:15 Round up Paul Ursell, The Royal College of Ophthalmologists
16:15 Close
Year(s) Of Engagement Activity 2018
URL https://visionuk.org.uk/events/ucl-vision-uk-dementia-sight-loss-conference/
 
Description IBME MedTech Week 2014/Digital Health Festival: 'Digital Health Devices' meeting 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact The"Digital Health Devices" event was co-organised by the Institute of Biomedical Engineering (IBME) as part of the IBMEMedTech Week 2014, which showcased medical technology/innovations and biomedical engineering across UCL. There was 10-days of events to highlight new innovations, share research, network with staff, industry & healthcare professionals and create new interdisciplinary collaborations.
Year(s) Of Engagement Activity 2014
URL http://www.fdh.ucl.ac.uk/
 
Description In Their Shoes - interactive dementia workshops in secondary schools 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Schools
Results and Impact Two PhD students within the project team (EH and RW) were successful in applying for a £700 Student Public Engagement Fund from Brunel University London to deliver interactive workshops about dementia in local secondary schools. Session material was developed and refined with the help of people living with dementia and Brunel University Volunteers service. 10 sessions with approx 30 students were run which were interactive and experiential, simulating some lesser known symptoms of dementia including cortical visual dysfunction. Students worked together in teams to complete challenges and were asked to reflect on their experiences. Teachers reported that students were enthused and engaged with the materials and students themselves demonstrated increased knowledge of the dementias and associated symptoms including perceptual problems. A sustainable toolkit is in development to allow other Brunel University students and volunteers to continue to deliver the sessions in the community.
Year(s) Of Engagement Activity 2016,2017
 
Description Inaugural PCA support group meeting - Alzheimer's Society offices, Bristol 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Inaugural Bristol PCA regional support group meeting presentation and workshop, with regional facilitator Roberta McKee-Jackson, to launch new group to support people living with PCA in the west of England.
Year(s) Of Engagement Activity 2018
 
Description Institute of Healthcare Engineering launch: Living well with Dementia 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact This event intended to formalise collaborative work between UCL's Institute of Biomedical Engineering (IBME) and UCL-affiliated hospitals. Professor Nick Tyler, Dr Catherine Holloway and Dr Keir Yong presented the "Seeing what they see" study from a booth to an audience formed of clinicians, academics, industry and third sector representatives.
Year(s) Of Engagement Activity 2016
 
Description Interactive session at National Co-ordinating Centre for Public Engagement (NCCPE) ENGAGE 2016 - Have your cake and eat it too: opening up conversations about rarer dementias 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact The session was well attended (40 participants) by professionals and researchers from a range of disciplines. The session encouraged conversation and problem solving among inter-disciplinary groups about visual-processing problems in dementia, specifically around understanding changes in vision owing to cortical changes rather than eye-health issues. Main outcomes were increasing awareness of both rarer dementias (e.g. PCA) and lesser known symptoms of typical dementia (e.g. cortical visual impairment).
Year(s) Of Engagement Activity 2016
 
Description Live Science residency at the Science Museum 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact This project focuses on the standardisation of the short and instruction-less eye-tracking test we have developed. We plan to use this exciting one-off opportunity to engage with the public at the Science Museum, during a 6-week residency in April-May 2016. SR research have agreed to loan an Eyelink 1000 desk-mounted eye-tracker worth £27,000 for testing purposes during the residency. we will use this residency to gather normative data and demonstrate the utility of eyetracking for assessing cognitive impairment in dementia.

Update: We acquired normative data from over 850+ members of the public for a number of instruction-less eye-tracking paradigms, providing a number of opportunities for analysis and development by post-doctoral and current and prospective PhD students.
Year(s) Of Engagement Activity 2016
URL https://www.ucl.ac.uk/drc/c-placid-study/eye-tracking/news
 
Description Luminate Dementia and Arts talk, Edinburgh, April 2018 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Talk as part of Luminate seminar series to approx 100 attendees, plus online audience
Year(s) Of Engagement Activity 2018
URL https://www.youtube.com/watch?v=-zzx43ijW5w
 
Description Lund University, Sweden, invited seminar on abstract words 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Type Of Presentation keynote/invited speaker
Geographic Reach Local
Primary Audience Professional Practitioners
Results and Impact New debate and revision of ongoing and planned experiments.

Further citations of current and previous work.
Year(s) Of Engagement Activity 2015
 
Description Media articles following Terry Pratchett's death 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact A series of contributions to media article about PCA, current research and the need for more, following the death of Terry Pratchett -

http://www.huffingtonpost.co.uk/2015/03/12/terry-pratchett-type-of-alzheimersbensons-syndrome_n_6857280.html
http://www.express.co.uk/news/uk/563535/Sir-Terry-Pratchett-Dead-Age-66-Discworld-Author
http://www.dailymail.co.uk/news/article-2991774/Fantasy-author-Terry-Pratchett-dies-aged-66-long-battle-Alzheimer-s-disease.html
http://home.bt.com/lifestyle/wellbeing/9-things-you-should-know-about-the-rare-form-of-alzheimers-that-sir-terry-pratchett-had-11363967942621
Year(s) Of Engagement Activity 2015
URL http://www.express.co.uk/news/uk/563535/Sir-Terry-Pratchett-Dead-Age-66-Discworld-Author
 
Description Meet the Researchers undergraduate video interview project 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Interview elicited questions about dementia diagnosis, causes and future research

Interview sparked interest in dementia research projects and placements by undergraduate students
Year(s) Of Engagement Activity 2014
URL https://www.youtube.com/watch?v=Z2Xv5WqhBaM&feature=youtu.be
 
Description NIHR Dissemination Centre report: Themed Review of government-funded research on the use of assistive technology for older people 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact More people are living longer with complex conditions and needs. Technology can help people to stay living well and safely at home as they get older. But technology is changing rapidly and it can be challenging to get the right technology for the right person with the right support. There has been considerable investment recently in developing and evaluating assistive technologies for older people. But this is a relatively new field and there are important gaps in what we know.

This review presents a selection of recent research on assistive technology for older people funded by the National Institute for Health Research (NIHR) and other government funders. This has been selected with help from an expert steering group. In this review we focus on research around the use of technology in the home, remote monitoring systems and designing better environments for older people.
Year(s) Of Engagement Activity 2018
URL https://www.dc.nihr.ac.uk/themed-reviews/Help-at-home-WEB.pdf
 
Description National Rehabilitation Centre for Persons with Disabilities PAMELA workshop (Feb 2015) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact A workshop was held at PAMELA for four Japanese delegates from the National Rehabilitation Centre for Persons with Disabilities (NRCD) (http://www.rehab.go.jp/english/) who came to the UK to discuss possible collaborations with UCL and NHS hospitals.
Year(s) Of Engagement Activity 2015
 
Description Normal? Festival of the brain public engagement workshop - Folkestone 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact 20 members of the general public and staff from UK dementia charities/organisations attended to hear about our awareness raising efforts in telling stories about rarer dementias and atypical symptoms like dementia-related visual impairment. Participants were then invited to make their own BakeTell tarts and share on social media their statements, key messages, questions and personal experiences of the dementias.
Year(s) Of Engagement Activity 2019
URL http://thesickofthefringe.com/diagnoses/baketelltarts
 
Description OTnews article and Royal College of Occupational Therapists conference featuring CPD course "Understanding and supporting people with dementia-related visual impairment" 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Article published on RCOT CPD course "Understanding and supporting people with dementia-related visual impairment" to coincide with Dementia Action week 2018.The article was featured in the OTnews and on the RCOT website, with the course covered as part of a facilitated poster session at the RCOT conference. The RCOT has over 32,000 active members.
Year(s) Of Engagement Activity 2018
 
Description Organised symposium at World Federation of Neurology applied research group 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact I organised the symposium 'Disorders of spatial and visual cognition in neurodegenerative disease' for the World Federation of Neurology Research Group on Dementia, Aphasia and Cognitive Disorders 2018 programme.

Symposium themes included theoretical developments in the understanding of diminished spatial and visual cognition in dementia, methodological innovation (whether pen and paper measures, virtual reality, kinematic or oculomotor assessment, or 'moving beyond the lab') and considering the translational potential of emerging findings.
Year(s) Of Engagement Activity 2018
 
Description PCA Support Group focus group discussions on the physical environment 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Focus groups were carried out at with PCA support group members at the onset of the study to gather information on patient and carer experience of home-based adaptations; group discussions were facilitated by Prof Mary Gilhooly, Dr Mary Pat Sullivan and Dr Keir Yong. At a later support group meeting n 2015, Pam Turpin held focus groups to gather perspectives on particular environmental challenges faced by people living with PCA and their caregivers. Information gathered from focus groups helped shape pilot testing for preparatory studies 2 and 3.
Year(s) Of Engagement Activity 2014,2015
 
Description PCA support group meetings: YPWD Berkshire, Bushey 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact I presented a summary of recent PCA research, including development of consensus classification criteria for PCA, and efforts to engage different professional audiences (optometrists, ophthalmologists, occupational therapists).
Year(s) Of Engagement Activity 2018
 
Description PCA support group newsletters 
Form Of Engagement Activity A magazine, newsletter or online publication
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact Members of the Seeing What They See team, as well as information on the study itself, were featured in multiple PCA Support Group newsletters.
Year(s) Of Engagement Activity 2014,2015,2016,2017
URL https://www.ucl.ac.uk/drc/pcasupport/newsletter
 
Description PCA support group talks (EH) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact In Their Shoes dementia workshops at London PCA support group 2016:
Talk describing the In Their Shoes schools project and inviting feedback and comments to approx. 60 support group members (family members and people with a diagnosis of PCA). The session plan was described and sparked questions and detailed feedback about ways to engage teenagers with lesser known forms of dementia such as PCA and the associated challenges.

Seeing What They See study findings talk at Gloucester regional support group 2017:
The study and emerging findings were presented to people with PCA and their family members (approx. 20). Input was invited and comments were offered and questions asked.
Year(s) Of Engagement Activity 2016
 
Description PCA support groups (presentations) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Presentations on the project 'Seeing what they see; compensating for cortico visual dysfunction in Alzheimer's disease' to a mixture of people with PCA, their carers and health professionals working with people with PCA. These took place at:
-YPWD Berkshire (Nov 2014, May 2014)
-Oxford (Feb 2015)
-Chichester (June 2015)
-Bushey (Nov 2015)
Year(s) Of Engagement Activity 2014,2015
 
Description PCA support groups (presentations) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Patients, carers and/or patient groups
Results and Impact Presentations on the Seeing what they see project to a mixture of people with PCA, their carers and health professionals working with people with PCA. These took place at: -Bushey (Sept 2016) -Oxford (Dec 2016)
Year(s) Of Engagement Activity 2016
 
Description Participation in Age UK 60+ fair - engaging local community members with our research 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact We described findings from the Seeing What They See project to members of the local community attending an Age UK fair in Uxbridge town centre. We answered questions about the study and outcomes and visitors relayed their own personal or professional experiences to us and took further information away with them.
Year(s) Of Engagement Activity 2016
URL http://www.loveuxbridge.co.uk/events/d/126658/60-fair/
 
Description Patient and carer support group 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact Establishment of a national and international PCA community of patients, carers and healthcare professionals sharing information, improving practice and generating ideas for future research

- Establishment of worldwide PCA Facebook group
- Highlighted the frequency of balance problems in PCA, which are now the subject of a new research project and collaboration entitled "Am I the right way up?" Investigating balance problems in posterior cortical atrophy, funded by the Alzheimer's Society.
Year(s) Of Engagement Activity 2007,2008,2009,2010,2011
URL http://www.ucl.ac.uk/drc/pcasupport
 
Description Poster presentation: AAIC 2017 - Is this my house? Understanding the impact of dementia-related visual impairment within the home environment 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact A poster presentation on the findings from two pilot home-based observational visits in which observational field notes, video data, audio recordings, sensor data and physical dimensions of the home were collected from people living with dementia-related visual impairment. Poster presentation sparked interest from practitioners working both one to one with people with a diagnosis of a dementia and those working in developing technologies for people living with a dementia.
Year(s) Of Engagement Activity 2017
 
Description Poster presentation: AAIC 2017 - Seeing What They See: Stress pathways for people with posterior cortical atrophy and their carers 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other audiences
Results and Impact Poster presentation reporting findings from interviews with 37 dyads about the impact of living with dementia-related visual impairment. Poster sparked conversations with and questions from academic researchers and professional practitioners about how people with dementia-related visual impairment may be best supported within their home environments.
Year(s) Of Engagement Activity 2017
 
Description Poster presentation: IAGG 2017 (San Francisco) - Being useful in rare and typical dementias 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Poster presented disseminating findings from interviews with people living with dementia-related visual impairment. Discussion sparked with colleagues about the challenges posed by dementia-related visual impairments and the ways that meaningful activities can be best supported for those living with a dementia diagnosis and their families.
Year(s) Of Engagement Activity 2017
 
Description Poster presentation: IAGG 2017 - Seeing What They See: Compensating for cortical visual dysfunction in Alzheimer's disease 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Reporting findings from both home and lab-based studies of the impacts of dementia-related visual impairment for people living with a diagnosis of PCA or typical Alzheimer's disease. The poster presentation sparked conversations about translating findings from lab settings to the home environment the implications for professional practitioners in supporting those living with dementia-related visual impairment in their daily lives.
Year(s) Of Engagement Activity 2017
 
Description Presentation at regional PCA support group (Bushey) 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact I presented findings from our home-based observational study on adapting activities within the home environment for people with dementia-related visual impairment which sparked questions and discussion throughout. Following these discussions we then shaped our next national PCA support group meeting agenda to meet these needs.
Year(s) Of Engagement Activity 2018
 
Description Programme chair for Alzheimer's Research Conference 2015 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? Yes
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Programme chair and local organiser. Highly enjoyable conference with lots of participants commenting on the quality of the scientific research presented and discussed.

Extensive knowledge exchange, interdisciplinary conversations and new collaborations. ARUK staff to report conference summary in Alzheimer's and Dementia.
Year(s) Of Engagement Activity 2015
URL http://www.arukconf.org/
 
Description Public engagement event at Wellcome Collection Reading Rooms - determining meaningful outcome measures (DIY-QoL) 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact 12 people attended for a publicly advertised workshop about meaningful outcomes for people with dementia in research programmes - discussion was generated about research and funding priorities and processes and some of our key findings from the Seeing What They See study were shared before people responded with their own personal experiences of dementia.
Year(s) Of Engagement Activity 2019
 
Description Read Clear - Facilitating Reading in Posterior Cortical Atrophy 
Form Of Engagement Activity A broadcast e.g. TV/radio/film/podcast (other than news/press)
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Patients, carers and/or patient groups
Results and Impact an interview was given to the podcast Alzheimers Speaks about Read Clear an application created to facilitate reading in posterior cortical atrophy.
Year(s) Of Engagement Activity 2017
 
Description Royal Society for Public Health Powerful Partners: Advancing Dementia Care through the Arts and Sciences - Engaged or exasperated? Interpreting physiological data in dementia research 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact A talk was given on the interpretation of physiological data collected from home-based observations of people living with dementia-related visual impairment carrying out their daily activities.
Year(s) Of Engagement Activity 2017
URL https://www.rsph.org.uk/uploads/assets/uploaded/856b4d47-c6ce-4595-8fdf6470679130df.pdf
 
Description Salzburg Global Seminar on Dementia Friendly Communities - invited participant and speaker 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Policymakers/politicians
Results and Impact Gave talk and led discussion themed around 'The Role of Arts in Mitigating the Impact of Dementia' with particular reference to dementia-related visual dysfunction
Year(s) Of Engagement Activity 2017
URL http://www.salzburgglobal.org/calendar/2010-2019/2017/session-587.html
 
Description Science Museum Dementia 'Late' 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact This will be a one-off event as part of the monthly 'Science Museum Lates' which will feature talks, demonstrations and exhibits by members of the Seeing what they see team.
Year(s) Of Engagement Activity 2016
URL http://www.sciencemuseum.org.uk/visitmuseum/plan_your_visit/lates
 
Description Surrey and Borders Partnership NHS Trust; Young onset dementia Masterclass on PCA research 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact I presented to an audience of professionals (Psychiatrists, Mental Health Nurses, Occupational Therapists, Clinical Psychologists) working predominantly in memory services in SABP. The talk consisted of a summary of posterior cortical atrophy, dementia-related corticovisual impairments, and applied research to support individuals living with such impairments.
Year(s) Of Engagement Activity 2018
 
Description TANDEM The Arts and Dementia conference, Nottingham, November 2018 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Talk on posterior cortical atrophy, and the role of people living with dementia and their carers in inspiting, shaping and improving research.
Year(s) Of Engagement Activity 2018
URL https://www.alzheimers.org.uk/Care-and-cure-magazine/winter-18/tandem-arts-and-dementia
 
Description Talk at Yiewsley Cornerstone Centre for over 65s group 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Team member EH reported on findings from the Seeing What They See project and outlined the next steps, inviting questions and comments from members of the local community, some of whom had a diagnosis of a dementia.
Year(s) Of Engagement Activity 2016
 
Description The Many Faces of Dementia free Mass Open Online Course 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact More than 8,000 people have already signed up for this free online course which reveals some of the key issues in dementia care and research by exploring four less common forms of dementia through the eyes of people affected by the condition, and world-leading experts at UCL. Week 4 (What if dementia affects your vision, not your memory?) is led by the Seeing what they see team.
Year(s) Of Engagement Activity 2015
URL https://www.futurelearn.com/courses/faces-of-dementia
 
Description The XIth PRACTICAL COGNITION COURSE Newcastle upon Tyne 4-5 October 2018 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact From programme:

The highly successful Practical Cognition Course will take place for the eleventh year running on Thursday 4th to Friday 5th October 2018 at the Institute of Neuroscience, Newcastle upon Tyne. This course is for consultants and trainees in neurology, psychiatry, neuropsychology and rehabilitation medicine who want to develop their practical expertise in cognitive assessment and relate this to clinically relevant neuroscience.
There will be a practical introductory session to cognitive assessment followed by four sessions of case presentations discussing the assessment, diagnosis and management of common cognitive syndromes. The course begins and ends with the patient. Case presentations will feature video material illustrating disorders that clinicians may encounter in daily practice. Each session will also include a talk from an invited expert, who will provide a framework for understanding the clinically relevant neuroscience.
This year's course will cover: MEMORY DISORDERS, DISORDERS OF MOTOR FUNCTION & COGNITION, VASCULAR DISEASE & COGNITION, and VISUOSPATIAL DISORDERS. Guest speakers include Sinead Mullally (Newcastle), Liz Coulthard (Bristol), Hugh Markus (Cambridge) and Sebastian Crutch (UCL). The course is organized by neurologists Tim Griffiths (Newcastle) and Chris Butler (Oxford), sponsored by the Guarantors of Brain, and accredited for CME points with the Royal College of Physicians.
Year(s) Of Engagement Activity 2018
 
Description Trialling the Amazon Echo in the homes of people with PCA 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Patients, carers and/or patient groups
Results and Impact 60 support group members (living with dementia-related visual impairment as a result of PCA) attended a talk about the features of the Amazon Echo and how it has been shown to facilitate independence for people with PCA. Members were also given the opportunity to demo the Echo and the talk sparked a number of questions, requests to participate in future research involving the Amazon Echo and expressions of interest in purchasing the Echo and requests for help with set up.
Year(s) Of Engagement Activity 2017
URL http://www.raredementiasupport.org/pca/meetings/london-meetings/
 
Description UCL Dementia Open Day 
Form Of Engagement Activity Participation in an open day or visit at my research institution
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact ArtNeuro Exhibition (Rag Factory, November 2014; Art + Neuroscience collaboration with visual artist Charles Harrison), plus series of talks by UCL dementia researchers and screen printing workshop with Zeena Shah using research brain and cell images.

New research participants and members of support groups.
Year(s) Of Engagement Activity 2014
 
Description UK-Korea Creative Aging festival - British Council trip to South Korea and invited talks 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact Week long visit to South Korea. Invited by British Council. Gave three talks in Seoul and Busan about dementia, vision and the arts.
Year(s) Of Engagement Activity 2017
URL https://www.britishcouncil.kr/en/uk-korea-2017-18/events/creative-ageing-conference
 
Description Wellcome Hub workshop: Transdisciplinary Research: what next and why? workshop and presentation - Copenhagen, May 2018 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Third sector organisations
Results and Impact Contributed presentation and discussion to this workshop. Workshop outline:
'Transdisciplinary Research: what next and why?' is a
collaborative meeting organised between Wellcome's Hub and Medical Museion in Copenhagen.
Delegates drawn from academic, artistic and public contexts, and geographically from Australia,
Denmark, Germany, Hong Kong, Korea, The Netherlands, Spain, Sweden, UK, and USA, will come
together to explore the future promise of publicly situated enquiries that cut across traditional
disciplinary boundaries.
We are using the label 'transdisciplinary' to identify dynamic practices that have recently developed
through creative co-production between the arts, sciences, humanities, but also crucially that reach
beyond academia into society more broadly. These fresh approaches frequently bridge objective and
subjective methodologies in ways that are also closely tied to the stakeholders affected. They are
frequently framed by time-limited projects; often they involve co-designing the processes of
investigation as well as its key outputs; and almost invariably, they engage the public along the way,
rather than just at the end. During the meeting we will be keen to test these and other notions of
what the common denominators for these types of investigation might be.
Some projects have emerged from universities increasingly seeking wider public relevance. Not just
an academic phenomenon, other initiatives have originated in museums and other cultural venues
eager to embed innovative research in their programming; while others still have been developed by
artist groups, commercial companies, charitable foundations, on-line networks and other
knowledge-oriented organisations.
The day will be divided in sessions that delve into these overlapping but different sectors:
? the first will focus on examples of this approach from a university perspective
? the second will switch to experiences drawn from public/ cultural institutions
? the third will shift again to looking at other 'independent' practitioners and organisations
? the final session will draw these together and begin to fashion a blueprint or manifesto outlining
the principles and actions for taking this forward.
Advocates for these ways of working sometimes risk drifting towards woolly enthusiasm, promoting
multidisciplinarity as a good in and of itself. Using as plain language as possible, this meeting wants
to be a bit more hard-headed. We want to know what differences they make, and for whom? In
what contexts is this work most fruitfully being undertaken? What does and does not seem to work?
As these ways of working become more established, this gathering aims to nurture and learn from a
growing ecosystem, and to work out how the next stages of its evolution can be developed and
supported.
Year(s) Of Engagement Activity 2018
 
Description Wellcome Trust Packed Lunch series presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact I discussed the work of the Seeing what they See investigations carried out at the Pedestrian Accessibility and Movement Environment Laboratory (PAMELA) at UCL. The audience was a mixture of the general public, carers of people with dementia and researchers. Outputs included starting a discussion with researchers from architectural backgrounds on what constitutes a dementia-friendly environment.
Year(s) Of Engagement Activity 2017
 
Description Wilberforce Trust Yorsight conference 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact The Seeing what they see study was presented at the Yorsight 2016 conference (theme: Research, Information and Technology). The conference was organised by Wilberforce Trust and involved a range of professionals working throughout medical and social care committed to supporting people with sight loss.
Year(s) Of Engagement Activity 2016
URL http://yorsight.org.uk/conferences/
 
Description Workshop for occupational therapists at COTEC-ENOTHE Congress 2016 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact An educational and interactive workshops for occupational therapists to extend their knowledge of dementia-related visual impairment and the associated challenges with daily activities. Discussions of strategies for enabling individuals to continue participating and to increase function.
Year(s) Of Engagement Activity 2016
 
Description YPWD Berkshire; PCA support group meeting presentation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact I presented a summary of dementia-related reading dysfunction in posterior cortical atrophy (PCA), a background of how different visual processing impairments restrict reading ability in PCA, and an intervention developed to support independent reading in patients. The audience included patients and carers of people with PCA, mental health nurses, psychologists and psychiatrists. Arrangements were made to attend in future to educate staff on dementia related visual problems and PCA.
Year(s) Of Engagement Activity 2018
 
Description Young Dementia Nework inaugural research event- invited keynote speaker 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact I provided a keynote address on PCA with a particular focus upon translating evidence into practical applications at the launch of this inaugural research event.

The format of the event involved joint workshops between young people with dementia and supporters and researchers. It is also designed to bring together a community of researchers interested in young onset dementia, and to facilitate collaborative bids for funding to evaluate services and interventions.
Year(s) Of Engagement Activity 2018
 
Description Young onset dementia support group: YoYo 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Patients, carers and/or patient groups
Results and Impact I presented a summary of dementia-related visual impairment, the Seeing What They See project and preliminary findings to a group of patients with mixed diagnoses of young onset dementia. Patients and carers of individuals with PCA made requests for more research to focus on young onset dementia, as well as on applied approaches to reduce in-home spatial disorientation.
Year(s) Of Engagement Activity 2017
 
Description Young people with dementia UCL conference- supported by Journal of Dementia Care 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Professional Practitioners
Results and Impact I presented a talk on dementia-related corticovisual impairment, posterior cortical atrophy and the Seeing What They See study including preliminary findings. The audience primarily included professionals working in secondary or tertiary young onset dementia services (old age psychiatrists, neuropsychiatrists, intellectual disability psychiatrists and specialist mental health nurses). This activity led to two follow on activities: 1) presenting on dementia-related visual impairments and applied research at SABP YOD masterclass, and 2) invited speaker on PCA at the Young Dementia UK inaugural event.
Year(s) Of Engagement Activity 2017