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- "Am I the Right Way Up?" Investigating Balance Problems in Posterior Cortical Atrophy
The aim of the balance study was to characterise the nature and extent of balance problems reported by some people with a diagnosis of PCA or memory-led Alzheimer ’s Disease. Balance deficits related to dementia are poorly understood and treated, and understanding these experiences may help us to address spatial disorientation and risk of falls in people living with dementia.
The study was conducted with Prof Brian Day at the Whole-body Sensorimotor Lab in Queen Square and involved an MRI scan as well as a set of balance and neuropsychological assessments. After a year of collaborating with our study volunteers on investigating balance problems in dementia, we finished data collection for the study in April 2018.
We wish to express our sincere gratitude to all our volunteers and their family members without whom this study would have not been possible. A description of the critical role played by those living with PCA in inspiring and shaping the project can be found here.
- ReadClear: An App to facilitate reading in PCA
Reading is central in our lives: a tool for learning, enjoyment, communication and connection with the world around us. People living with PCA develop visuospatial and perceptual difficulties that impair their reading ability from very early stages in the course of the disease. Losing the ability to read has been reported by many people as one of the hardest consequences accompanying the beginning of the disease.
Our group has been investigating the underlaying factors of reading impairment in PCA for over a decade, trying to understand better the mechanisms that explain poor reading in this population with the final aim of finding a way to maintain this function.
The learnings resulting from those years of experimental knowledge contributed to inform the App 'ReadClear', a software-based reading tool developed by our team in collaboration with people living with PCA. ReadClear was designed to assist reading in people living with PCA or any other neurological condition that impairs visual processing; in particular, seeks to alleviate the effect of visual disorientation, visual crowding and oculomotor apraxia. Reading using ReadClear may improve reading enjoyment and significantly reduce the percentage of reading errors, particularly errors due to omissions, repetitions and regressions in the text. A beta version of the App can be found in Google Play Store. To find out more, please visit the ReadClear website here.
- Seeing what they see (2014-2018)
Seeing what they see was an ESRC-NIHR-funded project drawing together experts in neuropsychology, engineering and social science and individuals living with PCA and typical Alzheimer’s disease to understand and address the issue of dementia-related visual impairment. This project included a series of investigations to understand the impact of the visual environment on a range of everyday abilities. Participants living with PCA, memory-led Alzheimer’s disease and control participants visited the Pedestrian Accessibility Movement Environment Laboratory (PAMELA) and were asked to conduct a series of everyday tasks involving navigating simulated domestic environments. These investigations evaluated which environmental conditions, such as lighting, room layout and use of environmental adaptations, were optimal in supporting participants to carry out everyday tasks.
In addition to recently published work on technology to evaluate navigational difficulties and hesitant steps (McCarthy et al., in press) and effects of environmental adaptations to support navigation in people living with PCA and memory-led Alzheimer’s disease (Yong et al., 2018), PAMELA findings have contributed to the following presentations and training materials:
- World Federation of Neurology Aphasia, Dementia and Cognitive Disorders Symposium (‘Disorders of spatial and visual cognition’)
- Young Dementia Network Inaugural Research Event
- UCL-Vision UK Dementia and Sight Loss Conference
- NIHR themed review on use of assistive technology for older people
- RCOT continuing professional development course on “Understanding and supporting people with dementia related visual impairment”, featured on OTnews
- Longitudinal neuroanatomical and cognitive progression of posterior cortical atrophy
We are conducting the first major longitudinal investigation of disease progression in PCA. To date, morethan 115 people with PCA, 100 with memory-led Alzheimer’s disease and 130 people without eithercondition have helped with the study. Participants from centres in the UK, Spain and US have completed up to6 annual assessments involving MRI brain scans and neuropsychological testing. In partnership with ProfDanny Alexander’s team at UCL’s Centre for Medical Image Computing, we have examined thetrajectories of volume change in different brain regions. With the majority of cases of PCA attributable toAlzheimer’s disease, the syndrome can provide important insights into selective vulnerability of brainstructures and better understanding of how one disease can affect different people in such different ways.
- Understanding the everyday experiences of people living with visual and memory-led dementias
We have completed two home-based studies in an attempt to increase our understanding of how PCA affects people in their everyday lives and contexts. We conducted a series of interviews, walk-around tours and observations with people in their home environments to get a better idea of the sorts of challenges people are facing day to day, any strategies they are already using for coping and how we might be able to improve support for people living with dementia-related visual impairment.
Findings to date relate to the often convoluted route to an accurate diagnosis; a range of difficulties in interactions with the physical environment including dressing, mealtimes, reading and navigating/transport; and a series of knock-on psychological and/or social ramifications including feelings of dependence, loss of confidence, and threats to one’s sense of identity. Despite these difficulties, many families’ demonstrated resourcefulness and responsiveness in developing their own creative coping strategies and we are currently looking in more depth at how meaningful activities are adapted and maintained by and for people living with these conditions.
These studies were undertaken as part of the ESRC-NIHR funded project ‘Seeing What They See: compensating for cortical visual dysfunction in Alzheimer’s disease’.
Published findings available here: https://bmjopen.bmj.com/content/8/2/e018663
- Play It Again: Responses to music
How do subtle changes in our heart rate, skin temperature, or pupil size map onto how we verbally appraise a piece of music? We are inviting people living with PCA or typical Alzheimer’s Disease to listen to music while we track these physical reactions using a camera and discreet wearable technology. We are also asking some questions about people’s music preferences, and some tasks to investigate the different ways in which we think (e.g. reading, speaking and writing). Play It Again reflects our ongoing interest in the role of the arts in the lives of people with dementia. More information about the project can be found on the Created Out of Mind website here.
More information about posterior cortical atrophy can be found on the PCA Support Group website.
Our commitment to Patient and Public Involvement (PPI)
Our group is strongly translationally driven. Our research starts and ends where people living with dementia identify their needs. Some examples of this ethos in the last few years are:
‘ReadClear project’: we co-designed and developed an assistive reading tool along with a group of people living with PCA using a participatory approach. Narration of this experience can be found at https://www.dementiaresearcher.nihr.ac.uk/guest-blog-how-ppi-worked- for-me/. A paper examining the impact that PPI had in this project is currently in progress.
‘Am I the right way up?’: This report describes our group’s experience developing a novel scientific investigation borne out of comments shared by participants in a support group conversation, along with reflections about the multifaceted nature of public involvement. “Contributions of patient and citizens researchers to ‘Am I the right way up? ‘study of balance in posterior cortical atrophy and typical Alzheimer’s disease” can be found at https://www.ncbi.nlm.nih.gov/pubmed/30373456
‘Recommendations for acknowledging the contributions to research of people with dementia and their carers’ (in submission). This piece of work argues in support of better recognition ofindependent public contributions to research and proposes five broad classes of PPI.
