1 May 2024
We recently spoke to three members of our Lived Experience Advisory Panel – Trevor Salomon, Jay Reinstein and Martina Davis – who shared their thoughts on why co-creating products with people living with dementia is so vital for the future of dementia care.
Why developing solutions with the end user in mind is so important
“The reason I’m a fan of co-creation is you start with a problem and work towards a solution, not the other way round,” says Trevor Salomon, a former marketing director and chair of the Longitude Prize on Dementia’s Lived Experience Advisory Panel (LEAP). “What I liked about this project was that the very first engagement we had with the innovators was … [them] listening to us talk about our experience of dementia.”
LEAP is made up of people living with dementia, carers, and former carers, who advise the candidates, review innovations, and help judges make decisions. It is a core part of prize’s commitment to co-creation: the idea that for innovations to succeed, innovators need to listen to people’s lived experiences, needs, and desires from day one.
“If you are going to produce something that’s effective, user-friendly, … ethically sound, … [and] truly meets the needs of the people they serve, you have to involve those people in co-creation from concept,” says Trevor, whose wife Yvonne was diagnosed with Alzheimer’s in 2013.
“For us to have a voice in the process is critical,” says Jay Reinstein, LEAP vice-chair and an advocate for dementia awareness, whose career in local government was cut short when he was diagnosed with Alzheimer’s in 2018. “It allows people to share their needs and… if [innovators] are listening and actually taking stuff seriously, it can really help not only improve a process but improve the end product.”
Martina Davis, a photographer, entrepreneur, and LEAP member, agrees. “I think the thing with co-creation … is that influencing power you can have to ensure technologies are given their best possible chance,” she says. “It’s about seeing how people’s brains work, … and digging and digging and digging to find solutions.”
Turning ideas on their head
Open-mindedness and flexibility are crucial to co-creation – helping to cut through stigma and misinformation, overturn assumptions, and reach unexpected solutions – says Martina, who was diagnosed with Posterior Cortical Atrophy (PCA) in 2019.
“If you’re open-minded then you’re going to listen, and if you listen then you’re going to pick up [on feedback], … so it’s actually a two-way street of questions,” she says. “It’s about the person on the other side of the fence being open-minded enough to not be prescriptive in their decision-making of what dementia actually means.”
And this open-mindedness – a quality she says she admires in the Longitude Prize on Dementia candidates – can propel a product from being a “marvellous idea … to being a really useful product.”
Positioning people affected by dementia as ‘experts by experience’ also disrupts traditional hierarchies of power and knowledge within research and development, leading to more meaningful solutions.
Co-creation also just makes business sense, given many innovators are start-ups without the depth of pocket to take risks. “They know there’s a greater chance of success if they’re engaging with their target audience from concept,” says Trevor. Potential customers are also more likely to believe in products that have been co-created with people directly affected by dementia.
Tackling scepticism and fear
Not all are convinced by the power of technology to improve dementia care and wellbeing. Sceptics contend that dementia’s complexity and variability mean solutions will never meet enough people’s needs. This is where adaptability comes in: Longitude Prize on Dementia innovations must be tailorable to different people’s needs, and tap the power of AI and machine learning to ensure solutions evolve as needs change.
Users themselves can be fearful about incorporating new technologies into their lives, explains Martina. To broaden uptake, tech needs to be straightforward, intuitive, and underpinned by clear messaging. Innovators should focus on “diluting … the perceived complexity of technology,” Trevor says.
Structural barriers to co-creation and tech access
Research teams also need to tackle structural barriers to participation in co-creation and consider how to “reach people on the margins,” says Trevor, who cites transport, digital literacy, and internet connectivity as key challenges. Barriers around language, culture, economics, or gender (particularly given that dementia disproportionately affects women) can also prevent people from taking part, as well as limiting access to innovations themselves. Ensuring people from a wide range of backgrounds can take part in co-creation is more likely to produce innovations that tackle existing health inequalities rather than perpetuating them.
It’s crucial to think globally about accessibility, too. Around 60% of people living with dementia are in low- and middle-income countries – set to rise to 71% by 2050 – and only 25% of people living in lower-income countries use mobile internet, compared to 85% in high income countries. Expensive devices dependent on digital literacy will simply be out of reach for millions of people, unless organisations and governments come up with proper funding and initiatives to widen access.
