Real stories

Research into how best to support carers if a person with dementia has disturbed sleep

Many people living with dementia have disturbed sleep. This can include sleeping less and walking about at night, and feeling excessively sleepy during the day.

Family members woken up by this may become exhausted and stressed. Costs to get extra care overnight can be unaffordable, and so it might not be possible for the person to continue being supported at home.

A study called DREAMS:START (Dementia Related Manual for Sleep: Strategies for Relatives) hopes to help carers manage a person’s disturbed sleep better. 

‘There are currently no known effective, safe treatments for sleep problems in people with dementia, possibly because there may be many causes even in the same person,’ says Penny Rapaport, Co-chief Investigator on DREAMS:START and a clinical psychologist at UCL in London.

Big difference

Through DREAMS:START, healthcare workers with a psychology degree hold six sessions with a carer, discussing how to improve the sleep of the person with dementia, who can also join the conversation.

The ideas are flexible, based on evidence and what works for participants, and can involve light, activity, comfort, routine and relaxation. 

A small study was done first to see whether DREAMS:START would be feasible. Around two-thirds of people approached agreed to participate in this, about 90% of them finished the six sessions and feedback was generally positive. 

‘It was really enlightening,’ said one daughter. ‘There were things that I would overlook that I didn’t realise were that important.’

Another daughter, who lives with her mum, said the programme worked really well for both of them.

‘Even people at work noticed a difference with me, because I was sleeping at night,’ she said.

Nothing worse

The main DREAMS:START study will see whether people with dementia living at home are sleeping better eight months after the sessions – and whether this improves their quality of life.

Researchers are recruiting 370 family carers in England whose relatives have sleep difficulties for a randomised trial. This means that a computer will decide who has DREAMS:START sessions and who only has more usual support. 

One participant already recruited is Jane Güleç, who lives near York and whose aunt has dementia.

‘My aunt is continually up and down in the night,’ says Jane.

‘On a bad night she can be wandering up and down the stairs, wondering where people are, or getting dressed and undressed. Sometimes she goes to bed already anticipating a bad night. 

‘There’s nothing worse than continually disrupted sleep for getting you down – it makes it much harder. 

‘Anything I can do that might help my aunt, myself and people in the future is worth trying.’

Unique insight

DREAMS:START is funded by the National Institute for Health Research and supported by our Research Network. Network volunteers use their personal experiences of dementia to influence dementia research. 

‘Members offer a unique insight which motivates researchers and helps them to understand the priorities of people affected by dementia,’ says Anna-Louise Smith, Research Engagement Manager at the Society.

Rossana Horsley is a Research Network volunteer who cared for her mother with dementia for three years.

‘Sleep was a major issue. She would get up at night distressed and it was hard to calm her down, so my sleep was completely savaged,’ says Rossana.

‘The research really spoke to me, so I wanted to help if I could.’

Rossana has supported DREAMS:START in many ways since it began in 2015. This includes helping to shape the feasibility study and ensuring that resources – such as the manual used in sessions – are as user-friendly as possible. 

‘Sometimes research can be a bit technical, so I’m very much presenting a lay person’s perspective,’ she says.

‘I’m helping to refine things and put them into more accessible language. It feels my contribution is worthwhile.’ 

Get involved

Another Research Network volunteer, Jane Ward, is a carer of eight years who continues to experience issues with sleep. Her involvement in DREAMS:START has included advising on the recruitment of people to take part.

‘We’ve discussed how to promote the study to groups who may not normally hear about research,’ she says.

‘We’ve also talked a lot about how people often don’t understand that research isn’t just about sticking needles into people, especially after all of the coverage of the COVID vaccination programme. 

‘We need to get word out there that there are a lot of other ways that people can get involved.’ 

If DREAMS:START works, researchers will look to make its successful elements more widely available as soon as possible.

‘It will mean that services can offer an effective treatment to improve the lives of people with dementia and their families,’ says Penny.

To find out more about taking part in this study, email Trial Manager Sarah Amador.