Lived experience the foundation of new support technologies

Including people with lived experience is the single most important factor in designing any new technology in dementia care, according to two experts in this space.

Co-design is a methodology which invites people to be active collaborators in the development of a product or service. In dementia care technology, people with dementia mate wareware and their care partners are the experts.

A recent systematic review found that while many technologies claim to be co-designed, people with dementia mate wareware are often only involved in later stages like usability testing, rather than in early design or decision-making.

And yet, too many projects in this space are quietly failing. Not because the technology is broken but because it was built in isolation.

Elli Cares is a new app which was co-designed with people living with dementia mate wareware and their care partners in Aotearoa New Zealand.

Founder Angela Edwards says technology is only as powerful as its relevance, and this means going beyond assumptions and directly involving the people who know the challenges best.

“This is where co-design makes all the difference,” she says.

“In practice, this might look like testing voice-controlled devices with people who find touchscreens difficult, or exploring the colours, sounds, and movements that feel most calming or engaging for someone with sensory sensitivities.

“In later stages, it can involve care partners identifying what’s working well in real time, giving designers a clear picture of where the technology supports or disrupts care routines.”

Alzheimers NZ Dementia Learning Centre Director Caroline Bartle says people living with dementia mate wareware can and do participate in research and co-design when appropriate forethought, support and flexibility are provided.

“Co-designing with people living with dementia isn’t about consultation. It’s about partnership.”

Angela says that’s the difference codesign makes.

“It doesn’t just collect opinions. It brings people into the process as equal partners. Their lived experience becomes the foundation, not an afterthought. It’s how we move from well-meaning ideas to real-world solutions that make a meaningful impact.”

Of course, co-design has some great outcomes for all those involved.

“Yes, co-design can lead to better technology,” says Caroline. “But often, the most meaningful outcomes aren’t products they’re human – a person realises they still have something to give, a researcher learns to think differently or project team shifts from ‘user testing’ to true empathy and collaboration.”

Some good examples of co-designed technology in the dementia mate wareware space include Tovertafel and LAUGH (Ludic Artefacts Using Gesture and Haptics).

These technologies had a robust co-design process including both people living with dementia mate wareware and their whānau care partners.

“True co-design is reciprocal. It’s not about extracting feedback or ticking inclusion boxes it’s about shared value. Everyone involved should benefit emotionally, intellectually, socially or professionally,” says Caroline.

Angela encourages designers looking to support people in the dementia care space to actively co-design any technology.

“There’s no doubt that dementia codesign presents challenges which often involve logistical and cognitive barriers. These call for greater flexibility when working with participants to ensure they feel safe to share their views in a supportive environment.”

Caroline says when the lived experience of dementia is excluded from design and development, technologies fail to fit with real needs, values, or routines.

“What might look good on paper often doesn’t work in practice.”

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