Quicklinks
Behind the Research and Co-design Process (Centre for Person Centred Research)
Grey Matters Information PDF (Free to download)
What is 'Mild Cognitive Impairment'? video
Overview
In this project, researchers set out to explore the day-to-day experience of mild cognitive impairment (MCI)—a diagnosis associated with a higher risk of dementia in adults over the age of 65. Grey Matters was a website co-designed with older adults and their whānau. Its purpose was to promote discussion around the day-to-day realities of ageing, with a particular focus on changes to memory and thinking. It had been designed to enable users to learn about the ageing brain, exchange ideas and experiences, and share strategies (what we call “Tips and Tricks”) for managing these changes from day to day.
Funded by Brain Research New Zealand, our original brief was to design an online resource for people with Mild Cognitive Impairment (MCI), a relatively new diagnosis that is associated with a higher risk of dementia in adults over the age of 65, but does not guarantee progression to more severe forms of impairment.
The discovery phase of this project consisted of user interviews to capture a diverse range of experiences relating to MCI. Working closely with memory clinics at Auckland and Counties Manukau DHBs (now Health New Zealand/Te Whatu Ora), a researcher went out and interviewed 28 people – a combination of those who had been formally diagnosed with MCI, their whānau, and others who had concerns about changes to their memory and thinking but no formal diagnosis.
It became clear during the interviews that very few people with a formal diagnosis of MCI knew they had it or understood what the diagnosis meant. In response to this, we shifted our focus away from the diagnosis and invited four of our interview participants to take part in a co-design workshop where they could share experiences and help us identify what was most important to them.
While the purpose of the workshop was to explore how memory problems impacted on their everyday lives, we found that our participants had more pressing concerns around social isolation and loneliness. Based on this insight, we decided that Grey Matters had to go beyond the concept of an information resource about ‘MCI’ and include ways for people to connect and share stories about ageing more broadly. Together we critiqued the websites and resources that participants currently used, with a particular focus on the features that they had difficulty with, the look-and-feel they liked most, and why.
In order to engage our participants in the design process, our methods had to be flexible and creative. For example, standard card sorting activities were challenging for those who had difficulty sequencing information. Others found paper prototypes difficult to work with and could not see how they corresponded to a website. We learned that higher resolution prototypes were needed, and we invited participants to draw and write on cards instead of sequencing them.
Our participants repeatedly emphasised how much they valued the co-design process. They valued being listened to and heard, and appreciated the opportunity to share their ideas. In this way, we found that the co-design process itself served to counter some of the feelings of marginalisation and loneliness that our participants had reported, and in doing so empower them to go beyond the perceived limitations of age.
Grey Matters was launched in February 2020. While the site is no longer active, the information has been preserved in the following PDF document that is free for download. Download PDF.
Project Details
Funder: Brain Research New Zealand (BRNZ)
Principal Investigator: Prof Nicola Kayes (Originating PI: Prof Kathryn McPherson)
Research team: Nicola Kayes, Pauline Norris, Leigh Hale, Guy Collier
Key Collaborators: Stephen Reay, Nick Hayes, Richard Worrall, Suzie Mudge, Duncan Babbage, Kathy Peri, Cassie Khoo
Contributors: 'What is MCI?' video designed and illustrated by Chloe Biano, Eilish Out-O'Reily, Kathy Jitpungtum and Sunny Shi. Voiceover by Imogen Zino.
Timeline: January 2015 – January 2020
