Dementia’s dirty secret #1: When carers lock up their loved ones

James Ashwell founded Unforgettable after caring for his mum when she was diagnosed with dementia. Here he explains why he believes many carers resort to desperate measures to keep a loved one with dementia safe

Missing from home. Three little words that spell fear and dread if you care for someone with dementia. But how do you prevent a loved one from getting lost – or worse – when they go out? Whilst people with dementia relish their freedom there’s no denying they are vulnerable and can be at greater risk in the ‘outside world.’

News stories about someone with dementia dying from hypothermia, being knocked down by a car or turning up in a hospital miles from home, serve as stark, regular reminders of potential danger. It’s no surprise therefore that many carers resort to desperate measures. Locking the front door and leave a loved one stuck inside is not something they want to do – most are extremely conflicted about it – but it can sometimes seem the only solution.

In his poignant account of caring for his mum Rose in The Little Girl In The Radiator Martin Slevin describes how he locked the door and hid the key each night before bed, and admitted he also locked the front door when he went to work in the morning, leaving his mum inside. Anyone with experience of dementia knows he isn’t alone. Every day, thousands of carers in the UK probably do exactly the same, though they rarely discuss it openly.

I was lucky enough to have lots of help whilst caring for my mum. I had three siblings and later we also had professional help, but it was still unrealistic to watch over her 24 hours a day. I remember being so afraid Mum would get out of the house (she often stood in front of the door fiddling with the handle trying to open it) that I’d lock the front door before going into the kitchen to make dinner.

Then one memorable day I forgot to lock it and Mum seized the opportunity to get out. Frantic when I realised my mistake, I ran after her and then followed discreetly to make sure she was safe. To my surprise, I discovered she was going to church. When she found the church door locked she simply turned around and headed home. It made me realise she hadn’t been wandering aimlessly as I’d assumed, she was actually walking with purpose – something the Alzheimer’s Society describes in detail, but which I hadn’t fully understood. It led me to consider all the times I’d kept her locked ‘safely’ inside. Had it really been necessary?

Looking back, I realise that the issues I was grappling with are all too common. With the knowledge I have now, I wonder if I should have followed the Person Centred Approach to dementia care which advises carers to assume their loved one can still do certain things until it’s proven that they can’t. Perhaps I should also have paid more attention to the theory of Positive Risk Taking; which would probably have meant allowing Mum to go out when she wanted but following her, just to make sure.

But would this have eliminated the need for locked doors? No. With the best will in the world, you can’t always follow a loved one when they want to go out, or trust they’re going to be okay. Door locks, window locks and even GPS tracking devices are, in my opinion, still sometimes worth considering.

Of course GPS tracking devices bring with them another set of ethical dilemmas. We may already use them to find children, pets and even cars, but whether they should also be part of elder care is a debate that needs to happen – the sooner the better.

Dementia is still so feared that many families find conversations about it too difficult. Imagine a time when a frank conversation could be had with a loved one about what might happen later on and whether it might be okay to use a GPS tracker to keep them safe – in the same way we now discuss treatment options with a cancer patient? There’s no denying GPS trackers can be a useful piece of kit. Trackers could also save the tax payer money too. Recent estimates suggest the cost to police of a single missing person with dementia ranges between £600 and £2,500. In Wales alone costs relating to missing persons enquiries amount to around £1.7million per year.

The need for honest debate is all too clear – and only then will dementia be able to unburden its dirty secrets once and for all.

What do you think? We’d love to hear your thoughts on this subject. Please email us theteam@livebetterwith.com. You can also share your views with other people in our community by joining our Dementia Support Group on facebook.