Pillows on a bed

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

Disturbed nights can be hugely challenging for people affected by dementia, but a sleep study is aiming to improve quality of life.

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.

Penny Rapaport, Anna-Louise Smith and Jane Ward

Penny, Anna-Louise and Jane.

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.

Join Dementia Research

Register your interest in taking part in great studies like DREAMS:START by signing up to Join Dementia Research.

Find out more

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Dear reader your advise about sleep deprivation is such a big issue with people who struggle with dementia on a daily basis, leaves a huge impact on one lives
affecting a person quality of life.
This debilitating disease robs the person of there life leaving devastating changes to there well-being.
This change can also impact on the person
who's caring for the person or patient for a long time, leaving them helpless at times to cope with a loved one.
This can have a huge impact on a carers life too, who's placed with a patient with dementia especially when a Care Plan isn't Correctly put in place to help the needs of that person/patient. This can result in all kinds of further distress to both, patient, family members and the carer especially when they know very little about the patient or nothing at all.
The overall care and
well-being is paramount otherwise the patient suffers greatly in silence through either being misdiagnosed, and or negligence which causes further distress encouraging fatigue, ,depression,and behaviour patterns which develope and escorlate like a child throwing there toys out of the pram.
This behaviour pattern sets in through not treating the person with respect, dignity and humility, also feeling of frustration most times when they cannot get out what they really want to say.
For them, being heard without feeling silly or stupid can make a person fear people who don't have a sense or knowledge of a person with dementia.
Feelings and behavioural problems can take a huge sense of quality of life.
These things are so important for the person progress, as lack of care through ignorance can cause the patient to revert inwouldly and loss hope of living,even self harm if the help isn't there they can revert back to the mind set of a child -like behaviour which most people wouldn't be aware of. these changes in there Loved one, unless they experienced it first hand can be fatel ... The saying goes like this "Once a Man, twice a Child". For some unknown reason, the brain is a powerful tool where you can, with the right help resets itself if caught in time. Depending of how advanced the dementia has progressed, there are method's and ways you can slow down the process of this disease, ìf the person, whom you are caring for, feels the love and warmth from the other person '(s) who are caring for them.
A loved one can be helped by taking them down memory Lane, helping them to remember there pass if they know anything, about the person which sometimes, good or bad can trigger some endorphins in the brain helping the patient to remember some things,slowing down the progression of this awful disease.
Trying to help the person feel alive and wanted, and loved so they respond to further help and treatment which can give them back a little bit of light/hope at the end of the tunnel, encouraging the person to respond with the help of laughter and a good support team in place show a huge improvement to the person's life.
Brain training can help with basis skills for improving the mind.
Some family photos also can have a huge impact on jogging the memory receptors in the brain.
My advise to all who are suffering in silence, don't give up with a loved one especially if you love them dearly, for they are worth saving.
Remember with any illnesses, I believe if caught early enough, you can help one another to heal.
Love is powerful with faith and endurance anything is possible.

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