Grey Matters is an interactive website designed with and for people experiencing changes to their memory and thinking. Users can learn (about the ageing brain), explore (helpful tips and tricks), and share (their own experiences).
Researchers at Auckland University of Technology (AUT) conducted in-depth interviews with 28 older adults, who self-identified as experiencing a noticeable decline in cognitive abilities or had otherwise been identified by a medical practitioner as having mild cognitive impairment (MCI).
Professor Nicola Kayes, Director of the Centre for Person Centred Design at AUT, says: “We were struck by the deep sense of uncertainty that people experienced. It was difficult for them to separate what was ‘normal’ for their age or a sign of something more.
“Even those who had been diagnosed as having mild cognitive impairment didn’t necessarily recognise the label or understand what it could mean. If anything, assessment and diagnosis made people feel more uncertain and worried about the future.”
In most cases, the follow up consisted of annual check-ups. There were no dedicated resources or tools available to help participants make sense of what they were going through.
MCI is often misunderstood. It is a relatively new label used to describe changes to your memory and thinking that are greater than what would be expected in a person of your age. It is a transitional state, between normal cognitive function and early dementia, and a classification for people at increased risk of developing a neurological disorder.
Professor Kayes says, MCI is not a direct pathway to dementia. Many people will remain in a stable condition for years, and one in five will return to normal cognitive functioning for their age.
Clinicians cannot determine what the outcome of MCI will be for a specific person, which made it all the more challenging for participants to understand what was happening or what to expect next.
“In the end, we agreed that we were designing an interactive resource and tools for people experiencing changes to their memory and thinking, irrespective of any awareness of mild cognitive impairment. People often develop unique ways of managing these changes, so there is a lot we can learn from each other,” says Professor Kayes.
A 73-year old woman shared her strategy for navigating large carparks. She attaches a clip-on flag to the back of her car. “It’s easier to look down a row of parked cars and see the little yellow flag, rather than having to walk around,” she says.
The project was an interdisciplinary collaboration, between the Centre for Person Centred Research (School of Clinical Sciences) and Good Health Design (School of Art and Design), funded by Brain Research New Zealand.
Professor Kayes led the related study and co-design process (which was originally conceptualised by Professor Kathryn McPherson). Her research typically draws insights from health psychology, applying what we know about how people think, feel and behave, to optimise rehabilitation.
The project team ran a co-design workshop, and continued working with participants to refine content and carry out user-testing for the website. One of the benefits of co-design is the likelihood of producing something valuable and useful. The intention was that older people would ‘want to use it’, and ‘be able to use it’.
Being involved in the co-design process was especially rewarding for the participants, many of whom felt increasingly isolated and less recognised as contributors in everyday life.
“Too often, older people living with cognitive decline are not valued in our society. It was humbling to realise how important it was for them to take part in the workshop. We wanted to value their lived experience and expertise, and recognise the skills and wisdom they have to offer,” says Professor Kayes.
The website is unique in that it is designed to be a living resource and build on the cumulative knowledge of users. Their shared stories will help identify issues and knowledge gaps that could be further advanced by research.
The Grey Matters website is a finalist in the ‘user experience’ category of the 2020 Best Design Awards. It features an animated video, ‘What is mild cognitive impairment?’, developed by AUT design students to help people make sense of what MCI might mean.