One size does not fit all when it comes to dementia technology

Jay Reinstein on why dementia tech needs to focus on adapting to individuals’ need rather than monitoring.

As someone who has had a lifelong career in local government, innovation has been at the heart of my work. Finding technological solutions to urban challenges has been a central part of my life. Although most of what I do today still requires solution-orientated thinking, embracing innovation and seeking technological solutions, this work looks slightly different now to what it did then.

In 2018, at the age of 57, my career at the City of Fayetteville, North Carolina was cut short when I was diagnosed with Alzheimer’s disease. Since then, I’ve been an advocate for dementia awareness, serving on the boards of Voices of Alzheimer’s, Alliance for Aging Research and the Alzheimer’s Association Eastern North Carolina. I am also the proud vice-chair of the Longitude Prize on Dementia’s Lived Experience Advisory Panel.

The Longitude Prize on Dementia is a £4m prize that launched in 2022, rewarding the creation of assistive technologies that use artificial intelligence (AI) to help people living with dementia maintain their independence. Last year, it announced 24 semi-finalist innovators – with ideas ranging from smart glasses to apps that can help users to navigate their local area.

The Lived Experience Advisory Panel (LEAP) is a group of people, who, like me, have been affected by dementia (whether directly, or via a loved one). We work closely with innovators involved in the prize to provide feedback and insights from the perspective of someone living with dementia to give these technological innovations the best possible chance of success.

How do we use technology for dementia?

In today’s rapidly changing world, there are a whole host of activities that technology can assist with – this aid is even more valuable for those of us with dementia.

Not only do I use devices such as my smart phone to stay in touch with friends and family, and Alexa to play music, but I frequently use these technologies to remind me of day-to-day tasks. For instance, to ensure that I don’t forget to lock the back door or attend an appointment.

Technology is part of an essential tool kit when it comes to living with dementia and in many ways, it’s nothing new.

There are many existing products deemed ‘dementia technology’, the problem is that many of these adopt a blanket, ‘one-size-fits-all’ approach. They focus on solutions that monitor someone living with dementia (such as sensors or a camera) as opposed to proactively assisting them, and enabling their independence.

Conversely, the Longitude Prize on Dementia is looking for tech products that help users to do exactly this, using intuitive machine-learning software to prompt them on a loved one’s name, or guide them through their daily routine (for instance, dimming the lights at bedtime).

While scientists and innovators continue to work rigorously in the hope to one day create a cure for dementia, it is technologies such as this that will enable people to live vibrant, independent lives which can slow down the progression of the disease and increase quality of life in the meantime.

Designing to incorporating all dementia experiences

There are around 55 million people living with dementia globally, and we’re all different. One size does not and should not fit all when it comes to solutions for people living with dementia.

This is why the Longitude Prize calls for solutions that not only promote independence, but can be tailored to different needs and evolve with the user, as their condition changes. Designers need to put adaptability at the core of the design process if they are to be successful.

This isn’t just my personal belief, or part of the Longitude’s Prize criteria, but one that is also held by 87% of GPs who, according to a survey last year, think that most of their patients with early-stage dementia would benefit from technology that was designed for their condition. Not only do 88% also believe that people living with dementia who can live in their own homes will live more fulfilling lives but 77% believe that they will actually live longer if they can remain in their own homes.

The importance of co-creation for product success

Much like my role in local government, as the vice-chair of the Longitude Prize’s LEAP, it’s crucial that I ask the right questions and push back if something doesn’t make sense. Grappling with the type of technology can be just as hard as understanding tricky policies.

While not everything I suggest will always be incorporated into the final design, nor do I expect it to be, it’s important that designers have the chance to speak to people with different types of dementia. Simply listening to a variety of insights will not only improve the design process but ultimately the end product.

It’s easy to group people living with dementia together as a collective, however the reality couldn’t be further from the truth. People living with dementia have different lives, are at a different stage of their diagnosis and therefore possess a different set of needs.

When creating solutions, it’s important that we remember this and design technologies that are adaptive and accessible enough to truly have an impact – which is ensuring that all of those living with dementia can live well, independently helping to enable them to continue to do the things that they enjoy while the science works towards a cure in the future.

About Jay Reinstein

Jay Reinstein

Jay Reinstein is an advocate for those diagnosed with early-onset Alzheimer’s and is the proud vice-chair of the Longitude Prize on Dementia’s Lived Experience panel – a £4m prize that was launched in 2022, rewarding the creation of assistive technologies that use artificial intelligence (AI) to help people living with dementia maintain their independence.

Jay spent 25 years in local government and most recently served as the Assistant City Manager in Fayetteville, North Carolina. He was appointed to the Alzheimer’s Association’s National Board of Directors in Chicago where he served until October 2021. Jay was also selected to serve as a member of the Alzheimer’s Association 2019-2020 National Early-Stage Advisory Group.