Sunday afternoons spent with my Grandad were a staple of my childhood. For as long as I can remember, once a month, we would set up in our living room, equipped with a pack of cards, a cuppa and the score from yesterday’s Crystal Palace game and sit for hours playing Newmarket.
Weekends had always been this way – he’d make the journey from his flat in South East London to my family home in Surrey. As he and I got a little bit older, mum suggested that we start going to his instead – I thought nothing of it.
From that point onwards, trips to my Grandad’s became few and far between, and with each visit I started to notice changes. He started asking me what we were playing mid-game, and became noticeably grumpier – I put it down to forgetfulness and old age.
It was only after a visit when my grandad asked who I was that my mum started to visit him alone. Although his official dementia diagnosis came later, she already had suspicions.
Looking back as an adult, all the telltale signs were there. Partially, I think my mum not telling me was due to her wanting to protect me; she wanted the time I spent with my Grandad to remain as quality time, as it had always been. I also think that for her, having to explain his diagnosis to me suddenly made what we were all facing feel very real.
While accepting my Grandad’s dementia was difficult, learning to help him live with it was even harder. Although my Uncle, who had moved in to help care for my Grandad, was determined to find as many ways as he could to best support him in his day-to-day life, he was left utterly exasperated.
At the time, there was very little in the way of general dementia support. Social care was extremely limited, and technology was so far behind, we didn’t even think to consider it (not that there was much available then anyway). I believe that this was one of the reasons why my Grandad’s condition deteriorated so rapidly.
My grandad went for about four years without an official diagnosis and lived for three more years with one, sadly passing away in the early 2000s. I can’t help but feel that dementia robbed him of his last couple of years. He completely lost his sense of self, had no tools to help him remain independent, and was left with little fulfilment in his day-to-day life.
Sadly, over a decade later, his eldest daughter, my auntie, was also diagnosed. Unlike my grandfather, she moved into a care home as her dementia progressed, where she lived with the condition for eight years.
Despite it being the early 2010s, where we were already on the fourth generation of the iPhone, assistive technology, particularly for people living with dementia, was barely even off the ground. Although it was never offered to my family, the solutions that did exist were primarily designed to provide carer assurance, and while important, it certainly didn’t empower individuals living with dementia to remain social, maintain connections with their family or do the things that they love.
The start of this century has seen so much in the way of technological breakthroughs and yet when it comes to dementia technology, very little has changed in the 15 years my family lived with the disease.
This missing piece of the puzzle was the driving force behind launching the Longitude Prize on Dementia in 2022 alongside Innovate UK. It is awarding more than £4 million to teams developing personalised, assistive technologies that have been co-created with people living with early-stage dementia to help them to remain independent in their own homes.
Now, just two years on, having received nearly 200 entries from around the world and supported 24 semi-finalists to develop diverse prototypes, we’re naming five promising finalists.
One is developing a device that you use like a traditional telephone, but with a screen to provide familiar reminders and make video calling more accessible, one has created a pair of AI glasses that can identify objects and offer name prompts, and another is using the same sensor technology that you find in World Cup footballs to track movement and predict falls – something I’m certain my Grandad, who was a goalkeeper for his local team, would have found fascinating.
Purpose built solutions, like these, will be transformative for the 55 million people living with dementia around the globe.
We always say that if you know one person living with dementia, you know one person living with dementia. I’ve witnessed this firsthand with both my Grandad and my Auntie. Everyone’s experience with the disease is different, and while these technologies don’t need to be everything to everyone all the time, the key is being able to adapt to the individual as their disease progresses.
That Sunday, once he had established who I was, my Grandad was soon shouting football chants again. If he’d have been given a gentle name prompt to remind him of who I, or someone else was when they came to visit, I truly believe this would have prolonged his quality of life, enabled meaningful connections with family and delayed his deterioration.
Every family deserves a choice when it comes to how to live with dementia – mine didn’t have that, but I truly believe the Longitude Prize will give that to others.
By Dr Richard Oakley, Associate Director for Research and Innovation at Alzheimer’s Society
Dr Richard Oakley, Alzheimer’s Society
