Building
dementia
tech together

New devices, aimed at improving the lives of people living with dementia, are released to the public every year in the hope of making a difference.

From gadgets to software and infrastructure, these inventions are well intended, but rarely make a difference in their lives.

Why? Because very few are created together with those who need them the most – they are not useful or used.

Dr Jacki Liddle and Dr Peter Worthy, from The University of Queensland’s ARC Centre of Excellence for Dynamics of Language (CoEDL), are challenging this.

They have partnered with living experience experts in a multi-disciplinary team to develop new technology that will support the lives of people living with dementia.

Unlike previous design approaches, the team is doing this by working alongside potential users of the technology at every stage in the design, starting with what they need and why.

To coincide with Dementia Week of Action, Dr Liddle and Dr Worthy spoke to Research News about the pioneering Florence Project.

“During home visits, I have seen many iPads and tablets tucked away in a drawer. In a lot of ways, it is like any of us receiving an unwanted gift,” Dr Liddle said.

“Technologies can also be insulting or harmful and frustrating too.

“It is important for people who are involved in developing technology, selling it, or supporting its use, to really listen to what kind of help people are asking for – and think about technology that provides that help.”

Dr Liddle is a research fellow and occupational therapist researching quality of life, participation, and life transitions.

She uses innovative technology, along with qualitative and quantitative research methods to investigate the needs and experiences of people living with neurological conditions.

The Florence Project brings together a living experience expert reference group with experts in computer science, interaction design, speech pathology, psychology, cognitive science and occupational therapy. They work towards the mantra, “make my day go better”.

The project challenges assumptions about what it means to live well with dementia and technology’s role in this.

By working with people who live with dementia, and their care partners, the Florence team aims to reduce stereotypes.

“There are many stereotypes and assumptions about older people, people living with dementia and technology – and some of them are contradictory,” Dr Liddle said.

“For example, there is an assumption that people living with dementia can't use technology at all, while at the same time there is an underpinning belief that everyone owns a smartphone and is familiar with Instagram.”

“We have to engage with a greater diversity of people and work with them to get a true understanding of how things are, and the capabilities and contributions of people living with dementia.”

Dennis Frost, who lives with dementia and contributes as part of the living experience expert reference group, has been creating his own technology, as well as supporting the work of the Florence Project.

“I have written my own ‘meaningful’ digital clock application that runs on my PCs,” he said.

“It displays the date and time continuously as well as a regular 15-minute audio cue.

“It also displays a logical Stardate calculated from the moment (Eastern Standard Time) that Neil Armstrong first set foot on the moon.”

Mr Frost finds it important and useful to be part of designing future technologies to make sure the process is efficient, and that the technology is helpful.

“I am not viewed tokenistically, but am being taken seriously and can have a positive effect on the project.

“There is a lot of technological innovation that could be vastly improved if a few simple changes were made early in the design process,” he said.

The team works together to discuss ideas, give feedback on prototypes, help with teaching exercises, and present their results.

Part of their unique approach involves collaborating to workshop what tech might work and what won’t.

“We work with people in setting up projects, checking our ideas, understanding their changing context, getting feedback on initial designs and prototypes, as well as drawing together ideas to inform future designs and technology supports,” Dr Liddle said.

“It is seeking to understand what it's like living with communication changes, what is and isn't working with technology at the moment for people living with dementia, and working together to make better technology to help people stay communicating and actively involved in their communities.”

Dr Worthy is a research fellow and interaction designer who is passionate about ensuring that technology supports what's important to people within the specific context in which they are using it.

He explains how prototype technologies are designed with interfaces that look and function in a simple, intuitive way, but with plenty of smart technology under the hood.

For example, one prototype looks and functions like an easy-to-use radio but is actually a streaming music player.

It allows people to access playlists from streaming music services with a single turn of a knob on the front of the device, as if they were simply turning on a radio, rather than accessing a specific app on a phone.

“Family members can add new music to the playlists through their phones or computers,” Dr Worthy said.

“The player can also be controlled by a ‘smart’ system similar to the idea of a smart home but a lot smarter.”

Dr Worthy said the team had also created a ‘language bank’ to power a larger ‘ecosystem’ of individual technologies that work together to support the things we do each day.

“Each individual technology is designed to fit within a person’s day doing something that the person wants or needs,” he said.

“All of these technologies then connect together creating a knowledge bank that stores information – such as important people and their relationship to the person; things that the person likes and dislikes; and different names that are used. For example, someone called ‘Riley’ can also be called ‘Riles’ or ‘Nan’.

By learning about the person’s world, the language bank can provide context for the words they use.

This information can be used by other applications to add context – for example, bringing a calendar to life by accompanying an appointment entry with a picture of the person you are meeting.

Some of the participants in the Florence Project are people living with dementia who know they won’t directly benefit from the research in their lifetime.

But out of a desire to help others and contribute to ‘something bigger’, they have volunteered their time to this project.

“In being part of the project, they contribute to the knowledge and evidence base that is moving forwards – it is bigger than any one of us, and I know from talking to some people living with dementia that that is a huge motivator in being involved,” Dr Liddle said.

Eileen Taylor, who is living with dementia, and who along with her care partner and husband Dubhglas are living experience experts, guide the Florence Project.

Their motivation for involvement is broad: “To ensure the inclusiveness of all people living with dementia while maintaining and protecting the human rights of this vulnerable group.”

Getting involved has meant “working collaboratively with researchers and exploring ideas and practical means to assist people to live positively with dementia into the future with the aid of technology” for Mr and Mrs Taylor.

The process of making technology together has been meaningful for all team members.

“By working together, we learn from each other and from the diversity of perspectives on what we are creating,” Dr Worthy said.

“We develop an understanding of each other, and this leads to a clearer understanding of what the technology should do or even not do.

“This deeper understanding means the technology we develop is better suited to people and their needs. More importantly, it really helps us as technology designers and developers understand the diversity of the world.”

Dr Liddle is confident that the knowledge gained in the Florence Project will continue to benefit the public for years to come.

“We aim to have created knowledge and technology that will continue to carry forward – pioneering new ways for collaboration with technology users and industry,” she said.