Published August 2022
Summary
Reading is one of life’s great pleasures, as well as being essential to many daily tasks. Sadly, difficulty reading is also one of the first symptoms of Posterior Cortical Atrophy (PCA), a rare form of dementia. Neuropsychologist Dr Aida Suárez-González has made it her mission to return this ability to people with PCA, in the process helping people with other neurological conditions too.
Just a small amount of investment can have a huge ripple effect. This small group of people can perhaps one day change the lives of millions of others.
Dr Aida Suárez-González, Senior Research Fellow and Honorary Senior Clinical Neuropsychologist at UCL Queen Square Institute of Neurology.
As a clinical neuropsychologist, I have seen first-hand the scarcity of rehabilitation therapies available for people with dementia and developed a passion for developing such therapies, to help people to live as well as possible with their condition.
In my research, I have focused on posterior cortical atrophy (PCA), a rare form of dementia affecting a region at the back of the brain that is responsible for processing visual signals. PCA presents earlier than other types of dementia, usually when people are in their mid-50s to early-60s, with one of the first symptoms being problems with reading.
Reading with PCA
Imagine trying to read a page of text, but all the words start to clutter together and lines overlap, so you are unable to make out individual words or sentences. This experience, known as visual crowding, is what reading is like for someone with PCA.
It can be very alienating for people to lose their ability to read, and the resulting outcome – becoming functionally blind – is deeply traumatising. As the disease progresses, people may lose other skills, like language and attention, which make it more difficult to cope with visual difficulties. We wanted to help preserve or improve the ability to read in people with PCA, in the hope that it could improve their quality of life in the long term.
ReadClear: An app co-produced with patients
From our experience at the UCL Dementia Research Centre, we knew that certain changes to text could enhance reading. For example, people with PCA find it easier to read words that are surrounded by fewer other words (such as in the bottom line of a block of text) because there is less crowding. Our challenge then was to translate this knowledge into practice.
With my team at UCL, we set out to create an easy-to-use app called ReadClear, which would apply these techniques to adapt texts and make them easier to read. Thanks to funding from the Dunhill Medical Trust (DMT), I was able to work on the project for three years. We were also able to recruit a software developer to help us develop the app.
Throughout the project, co-production was very important – we developed the app together with people with PCA, directly using their input to inform and shape its development. After we had created the early prototype of ReadClear, we started visiting people with PCA in their homes to test it out.
It would have been completely impossible to develop this app without the help of people with PCA. Their insights were critical and we very soon discovered that what worked well under the controlled conditions of the lab didn’t always translate into real life.
For example, we learned that people with PCA often use a ruler to mark their place in the text, or they create a hole in a piece of paper to help them track one line at a time. So one of the things we did in the app was to create a ‘digital ruler’ to mimic the technique they were used to.
It would have been completely impossible to develop this app without the help of people with PCA.
Clinical impact
After nine months of development and testing, we initiated a home-based clinical trial of the app. We sent tablets loaded with ReadClear to 20 participants, trained them how to use it, and monitored changes to their reading ability.
We found that ReadClear significantly improved reading ability and reduced errors, such as missing words in a sentence and re-reading the same words, compared to using a standard e-reader.
We didn’t only look at objective measures of reading accuracy. We learnt from developing the prototype of ReadClear that the experience and human enjoyment of reading were also very important to people. Using a questionnaire, we found that most people found the enjoyability of the reading experience improved using ReadClear. They also said that overall, they preferred using it to other devices or strategies such as using a ruler.
ReadClear significantly improved reading ability and reduced reading errors.
From small seeds to big impact
We have been so happy to see the impact ReadClear has already had, not only from our clinical trial participants but also from colleagues in other clinical areas. We have had feedback from speech and language therapists and colleagues who work with people following stroke and other neurodegenerative conditions, including Progressive Supranuclear Palsy (PSP), that this could be a transformative tool for their patients.
Thanks to funding from a Zinc-UKRI Healthy Ageing Catalyst Award, I am currently working to transform ReadClear into a product for market, where it can reach all of these different patient populations.
I really appreciate the vision of the DMT in making this possible. It was their funding that enabled me to work as the postdoc on this project and to get it to where it is today.
Reflecting on the project now, I think it is to the DMT’s huge credit that they invested in it without knowing it could have such a wide-reaching impact beyond people with PCA. They saw that it was important to invest in improving quality of life for this patient group, even though their condition is uncommon.
This really shows the importance of funding research into what may at first seem like a niche problem that turns out to have a much larger application. This handful of people in our early studies may perhaps one day change the lives of millions of others.
Find out more
To find out more about ReadClear, visit the website here. You can try the app on your desktop browser or download it for Android and iOS.
You can also read more from Dr Suárez-González’s by checking out her blog posts for Dementia Researcher here and follow her on Twitter here.
UKRI Healthy Ageing Challenge Documentary: Making Reading Real
