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Designing Dementia Citizens with the dementia community

Since 2014, our team at Ctrl Group, a design research company for healthcare, have worked with Nesta to design, research and build the first two pilot apps for Dementia Citizens - Book of You and Playlist for Life. 

In this project, some of our most important partners are the people with dementia and carers who generously signed up to take part in the early stages of design research.

Here we describe what the dementia community taught us, and how these learnings are woven into Dementia Citizens. Although the apps are still a work in progress, we want to acknowledge how far we’ve come thanks to this partnership. Below, people’s names and personal details are changed for anonymity. 

1. Doing something positive and empowering

When Caroline and Julia first saw Dementia Citizens they embraced the positive tone. It felt especially important given the clinical and stigmatising language they face. And whilst their week was full of activities, they liked having something to do during quiet moments at home. 

In the latest apps we address the need for positive narratives and home activities:

  • They can be used whenever people want.
  • They give a sense of being active, in control and giving something back.
  • The language and tone is positive and empowering.

2. Being digitally inclusive

Sally and Steve worried about using technology. To start, they signed up to Dementia Citizens as a pair. Their daughter also helped out. After two weeks both had grown in confidence. Steve felt that over time, and through family support, he could use the app independently. 

In the latest apps we address how people with dementia have digital skills or can learn them over time: 

  • People can take part independently or with a carer. 
  • Making the apps as accessible as possible.
  • Providing a support service. 

3. Being dementia friendly

Paul was confused by a screen with a numeric scale and a smiley face at each end: it was abstract and involved too many symbols. But as soon as he saw screens with simple and direct information, Paul understood perfectly. 

In the latest apps we address the need for dementia friendly design: 

  • Making messages direct, supported with clear images. 
  • Breaking information into chunks. 
  • Allowing people to interact at their own pace. 

4. Giving consent

Sue and Katie were comfortable with the idea of consent, but had scanned through the app’s consent process. It was long, with academic language, and they were impatient to get started. Later, they couldn’t remember the content and wished it had been more clear.

In the latest apps we address the need for a consent process that’s easy to understand and respond to on a mobile device: 

  • Making the process short and interactive. 
  • Removing academic jargon. 
  • Being inclusive - people can still use the app even if they don’t take part in the study.

5. Adapting questionnaires

David and Deborah were curious about the science behind the study, and approached the questionnaires as a chance to reflect on their experience. But it was important for them to be reminded of the study’s purpose and to be able to complete the questionnaires in their own time. 

In the latest apps we address the need to adapt academic questionnaires to mobile devices and people’s busy lives: 

  • Each questionnaire starts with an explanation. 
  • Questions are rephrased to be answered without a researcher. 
  • Questionnaires appear after app use, but can be completed later.  

6. Creating a Book of You

Ruth and Kevin saw Book of You as an opportunity to capture family stories. As they began to record their first photo, Keith was nervous that the process would be complicated, and felt pressure to tell the story perfectly. Ruth and Kevin agreed that the app could give more support.

In the latest apps we address the need for simplicity, flexibility and reassurance: 

  • More guidance about how to use the app. 
  • Easy editing to record and re-record images, sound and page titles as people want. 
  • Pages can be moved across chapters.

7. Making a Playlist for Life

At the start Gaby didn’t understand what a playlist was. Sharon wondered what made Playlist for Life distinct. As they discovered music finding prompts, songs triggered memories and Gaby burst into song. Sharon immediately recognised the value in having songs in one place, and how together they would delight in creating playlists and listening to them meaningful ways. 

In the latest apps we address the need to distinguish Playlist for Life through music finding guidance and interactive listening: 

  • More categories to prompt music finding.
  • Tagging songs and organising playlists by mood and activity. 
  • Visual playlists, with images to represent each song. 

Reflecting back

As designers and researchers, the process of reflecting on our work makes us better at what we do. Through our partnership with people with dementia and carers we learned how to face assumptions and biases, and to create apps that we hope are thoughtful and meaningful to the people who use them. As the beta versions of the two Dementia Citizens apps go live, we continue to welcome feedback and collaboration. For now, we want to thank the wisdom and generosity of the people with dementia and carers who took a leap of faith, welcomed us into their homes and their lives, and led us to this stage.  

Author

Emilie Glazer

Emilie is a Design Researcher at Ctrl Group, where she leads on user research for Dementia Citizens.