Dementia is an evil disease but we must not lock our loved ones away because of it

A new report has predicted that a total of 1.7m people in England and Wales could be living with dementia by 2040 – 40 percent more than previously thought.

The report’s authors say it indicates the “burden on health and social care costs might be considerably larger than currently forecast.”

In fact, it’s an additional half a million people.

But for me, it’s not about the additional costs in pounds, it’s the number of people who will suffer from a truly awful disease, and the impact it has not only on them but on their friends and families. 

There’s no cure for dementia and it robs people of their memories, their cognitive abilities and their independence.

It’s a vicious, heart-breaking illness.  

Every day there are thousands of amazing, intelligent people working to make this disease history. I can’t help with finding a cure, but what I want to do is help people maintain that thing we all want: independence. 

When someone has dementia, their support network can be left thinking the only option is to keep them indoors, or move them from their own home into residential care where someone can always keep an eye on them.

But for people, particularly those who are in the early and mid stages of the disease, I think this is unnecessary and even cruel.

Over fifty years ago, we sent a man to the moon.

There is no reason why in 2023,  a vulnerable person should remain trapped in their own home, becoming lonely and frail, perhaps with only a couple of short visits a day from a care worker. About 20 percent of GP appointments are estimated to be for non-medical reasons. I am sure a good number of these are from lonely, isolated people. 

I’m not disparaging care workers – they do an amazing job and we’d be lost without them.

But even – or perhaps especially – they’d agree that we should be helping people remain active and social for as long as possible. It’s great to see the use of technology growing. We often hear about its use in the NHS, but it’s in social care where it can make the difference between a good life, or a lonely life.

Working in social care, I meet some amazing people but one person who stands out is my aunt Betty, who inspired me to set up Oysta because she was given the opportunity after being discharged from hospital to either remain in her home with an emergency button nearby, or continue to go for daily walks and meet her friends, but without that lifeline.

I wasn’t having that.

Aunty Betty has been diagnosed recently with dementia and I cannot allow her to be isolated. I've been watching how much faster her decline has been when she stayed inside but now she's back out and about and looking and feeling much better. Betty may be a personal case to me but I want to ensure that everyone who can can benefit.

Like Hugo, dubbed the ‘miracle man’ by his doctors after suffering a haemorrhagic stroke, a month-long coma followed by bacterial meningitis, who was told he probably wouldn’t walk again. Technology-enabled care can’t claim credit for his amazing determination for learning to walk – that is down to him, his wife and the medical and rehabilitation staff who supported him. But his daily walks with his dog could continue, because technology ensured that even out of the house, help was always at hand. 

One of my favourite stories is of David*, who worked as a postman before he became ill.

He was being locked in his own home as he would go out each day. The carers were turning up at his home at 9am every morning to find no one was at home – and naturally, they called the police.

David wasn’t lost – he was on his rounds! We looked at the data from his Oysta device and realised it was showing his postal route. Every day, at 6am, he was off on a walk of several miles.

There was an awful Victorian notion of ‘bed rest’ if people were ill or vulnerable but actually, not keeping active speeds up the rate at which people lose muscle tone. It makes sense – as anyone who has gone back to the gym after an absence can attest. 

That declining quality of life is why it is so important we help people remain active and independent – even if it’s not the long walks David goes on every day, but a trip to see friends or a walk to the shops. 

The Alzheimer’s Society calls dementia “the biggest health and social care issue of our time” and notes that one in three people born in the UK today will develop the disease.

People with dementia are, according to the charity, the biggest users of social care which they say is “costly, difficult to access and too often not tailored to their needs.”

It’s likely that every one of us will come into contact with social care services at some point in our lives, and when we do, we expect it to be able to provide the support we need.

That’s why it’s so important we ensure it is given the same priorities as healthcare and not, as I feel it is now, treated as some Cinderella service.

Independence for vulnerable people, whether they have dementia, or whether they are frail, is what motivated me to find better ways to help people remain independent. These latest statistics indicate why it’s something which concerns all of us.

The technology is there, it's about putting it to use to help people live their best lives. 

Mario Zuccaro is the founder of Oysta, part of The Access Group.

(Link to original lancet article: https://www.thelancet.com/journals/lanpub/article/PIIS2468-2667(23)00214-1/fulltext )