Staying up late

Dementia Care
July 17, 2017

What time do you go to bed? We all long for an early night in theory, but then find ourselves watching telly, reading a book, pottering around the garden, meeting up with friends.

It worries me how readily we can accept extremely early bedtimes for adults who need care, whether in their own homes or in a residential setting. I do know how hard it can be, for staff, to work when families or friends are free, whether that’s weekends or evenings. And I’m aware of the need for providers to cut costs, and how expensive, relatively, it is to employ staff at weekends and evenings.

But we do need to recognise it’s not a normal life for an adult, even if they’re living with a learning disability or dementia, say, to be ‘put to bed’ around 7 or 8 in the evening. And it can hardly come as a surprise when someone then is wakeful during the night.

‘Should I stay or should I go?’

Some thought-provoking research has just come my way. Social workers explored the evening routines of people with learning disabilities in supported living settings: they found that early bedtime, around 8:30, was very common. This research led to a provocative blog ‘Should I stay or should I go’ – you’ll find it at:

The blogger is Paul Richards, part of a punk band with learning disabled members.  He got fed up with his audience all leaving around the time the band came on stage – not, as he hastened to add, because the band was rubbish, but because the support workers who’d enabled people to attend the gig had noticed the time, and wanted to get back before the end of their shift. And so he created a system of ‘gig buddies’, volunteers who would enjoy developing a friendship with someone whose interests they shared, and going together. For more on how it works, see the link: it’s a great model to follow.

A one-bed flat can be an institution

And it isn’t just outings. As Paul says, ‘it’s easy to turn a one bed flat into an institution if we create a series of rules and systems by which someone needs to live by’. He gives the example of someone whose support worker insisted he always did his laundry on a Wednesday morning, rather than wait until he had a full load. It probably made good sense to the support worker – ‘that’s the activities for one morning a week sorted, and it makes sure we don’t forget his washing’ – but you can imagine how institutionalised it made the man feel.

The thrust of the Mental Capacity Act is to empower people. This can be done both by recognising when they do have capacity to make their own choices, but it can also be done by enabling people to live as normal and adult a life as possible. When you recognise that someone has capacity to manage their own medication, for example, you can then liberate them from having to be ready for bed at the time the meds trolley goes around: they can do as they wish, until they feel ready for their bedtime medication.

No talking to the neighbours

Not long ago, I went to visit a supported living setting that consisted of two semi-detached houses. There was a house rule forbidding residents from each house to talk over the back fence: I saw the rule written up, with an easy-read version, in each house. A young woman living in one house said it made her sad, since her cousin lived next door but she couldn’t say hello to him from one garden to the other. And why was the rule there? It turned out that, quite a few years ago, there were a couple of residents who used to row noisily over the fence, and disturb the neighbourhood.  They’d both moved on, some time ago, but the rule had survived, unquestioned.  ‘That’s just how we do it here.’

What does choice mean?

A pitfall for some support staff is the great wish to make people with support needs live a ‘better life’ than we do ourselves. One of the many bees in my bonnet is the way that many people with learning disabilities get signed up to ‘healthy eating’ programmes, or are never given the chance of a lie-in. And I do appreciate that I too live my life either doing ‘healthy eating’ or thinking that I really will start tomorrow.  But it disturbs me a lot when people who have less choice than me to decide ‘you know what, I’ll have a bit of a treat today’, are thoughtlessly made to live a life lacking in normal variety.

So, let’s be a bit more critical of the rules we set for others, and a lot more forgiving of people’s rights to live as they choose, as far as is humanly possible. I can’t do better than end with another bit of Paul’s blog:

‘If people really choose to go to bed at 8.30pm that obviously is totally their choice but it’s too simplistic, and convenient, to say that without fully considering the context that people live in, the systems, rules and practices of staff that may mean there is not really any other choice.

How can we support people with learning disabilities to be citizens, active in their communities, if they’re denied the right to take part in the social activities that many of us take for granted?

At the heart of everything we do as a charity is the concept of supporting people to make real choices about the way they live their lives. Even though we’re called ‘Stay Up Late’ we don’t actually mind what time people go to bed, as long as they really are making a choice about it. We just thought that ‘Choice and Personalisation the Charity’ didn’t have such a ring to it as Stay Up Late!!’

Rachel Griffiths
Rachel Griffiths

Mental Capacity and Human Rights Specialist


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