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GUEST COLUMN: Why co-creation is key to development of dementia tech

Colin Capper

Why is co-creation crucial to ensure that dementia technology solutions are fit for purpose? Guest columnist Colin Capper draws on his experience as head of research development and evaluation at Alzheimer’s Society to find the answer.

From verbal communication assistants that help with word recollection, to solutions that connect members of a community with locals living with dementia, assistive technology systems offer benefits to both people with dementia and their carers.

Dementia is a cruel disease that slowly steals people’s memories and identity. While technology will never be a replacement for human care, it can play a crucial supplementary role in helping people with dementia to live independently, keep in touch with others and even walk in their communities more safely.

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Equally, it can also provide much-needed reassurance to families or friends, secure in the knowledge that the person in question is equipped with the support they need.

However, creating technological aids for people living with dementia is far from simple. Innovators must ensure Dementia Tech is personalised and caters to the individual’s unique symptoms and circumstances, particularly as their needs will change over time.

To ensure assistive technology is genuinely helpful and adopted, people with dementia must be actively involved during the design process.

For example, my grandmother, who lived with dementia, was an elegant lady and certainly wouldn’t have wanted to wear a clunky alarm fob that clashed with her outfit or reminded others of her age.

However, she’d have been more than happy to wear a gadget disguised as a brooch. In other words, not only do we need to design solutions that are genuinely helpful and meet a real need, but we also must ensure that those for whom they are designed will want to use them and feel happy doing so.

In my experience, some older people are more likely to adopt technology if they believe it fits their lifestyle and adds genuine value to their lives.

It’s this type of consideration we need to make when designing assistive technology for people affected by dementia and why we believe co-creation is so important.

Some might think technology doesn’t have a role in conditions that predominantly impacts older people but stereotypes of a generation resistant to technological change are just that – stereotypes.

It’s simply not the case that people with dementia are unwilling to adopt technology or that they have nothing to add to the design process.

One prime example is ‘How Do I?’, an assistive technology company that wants to help people with dementia live independently at home for longer.

Last year, the company designed Refresh, a mobile support tool that can link personalised videos to objects in the home to remind the person of how to complete a task, or to capture memories.

As part of the development process, the company invited people with dementia and their carers or family members to test the tool and give their feedback.

Throughout the testing, the How Do I? team found many people living with dementia use social media, including some who had celebrated careers in technology.

Even volunteers who were inexperienced or initially not interested in a digital product became increasingly engaged in the testing over time and emerged excited to share their experiences with others.

Ultimately, people with dementia provided valuable, actionable feedback and helpful insights which would later serve the testing team in the development process.

At Alzheimer’s Society, we strongly believe in the benefits of co-creation and it is at the core of what we do.

One recent example of this is The Hospital Journey Tracker, a system which emails status updates to a carer, friend or family member to inform them of the latest developments in the care of the person with dementia, which they themselves may not be able to convey.

In this project, we involved people affected by dementia at every stage, to understand their challenges, find solutions and ultimately, create a prototype based on their input.

Feedback from people affected by dementia also proved essential when designing the prototype, for example in terms of the wording used in the system.

Not only should older people actively participate in co-designing tech solutions, but we are also seeing examples of where they are creating them too.

83-year-old Han van Doorn built a tech start-up – ‘AreYouOkayToday’ – after having looked after his late wife who lived with dementia.

By monitoring the usage of electric appliances, such as a kettle or smartphone, by elderly people, the company creates a pattern of behaviour and uses a traffic light system to alert people to any deviations.

Han’s age and personal experience were the very things that enabled him to understand the problem and create a solution suitable for his age group, showing that when designers truly understand the barriers and users’ needs, technology can make a real, tangible difference.

It’s true for every technological solution but for products to take off, innovators must always involve the unique individuals to whom the solution is targeted in order to co-create a truly valuable and effective product. This is especially important in the case of dementia owing to the progressive and ever-changing nature of the condition.

The best way to do this is by viewing people living with dementia not as passive recipients, but as co-creators.

By involving people with dementia in both the research and development phases of a product, we can ensure that the technology will make a genuine difference to both them and their carers.

It is only through this that any barriers can truly be understood, and suitable products can be developed.

In turn, investment in Research and Development can result in useful products that have wide appeal, and thus allow for reinvestment, opening up the Dementia Tech market.

Done right, technology can deliver life-enhancing results for people with dementia and their carers, but new approaches are needed that bring researchers, innovators, people affected by dementia and social care providers together to accelerate the development of desirable, scalable and impactful solutions.

That’s why Alzheimer’s Society is currently working with Nesta Challenges to explore a possible Challenge Prize to accelerate innovation in this space.

If you are an innovator, researcher or social care provider interested in developing tech to support people living with dementia, get in touch with dementiaprize@nesta.org.uk.

Tags : Alzheimer's SocietyColin Capperdementia
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