Couple Philip and Charman took part in the groundbreaking research (Image: Philip Robinson)
Simple changes to habits can improve the lives of people with and their family carers, a pioneering study has found.
Scientists at UCL developed a world-first programme which provides six hours of support for carers to learn about and test new techniques.
Philip Robinson, 70, and his wife Charman, 73, were among hundreds of volunteers who trialled methods including use of light boxes, increasing daytime activity and building bedtime routines.
Former dyslexia tutor Charman was diagnosed with primary progressive aphasia, a rare form of that affects speech and language, 10 years ago.
Philip said: “As things progressed, Charman slept much more lightly, would find it difficult getting to sleep and often woke early. It grew as a problem.
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“She was waking up at night, sometimes having some behavioural problems, she was unstable on her feet. If she got up there was a risk that she would have a fall.”
Charman was diagnosed aged 64 after she began struggling with mathematics and finding the right words. She is now unable to speak or write and has difficulty walking.
The couple, of New Malden, in Surrey, are passionate about taking part in research so enrolled in the DREAMS START sleep study.
Philip took part in six guided sessions, which helped him better understand how dementia affects sleep, and trialled a range of interventions.
They implemented changes such as reducing stimulation an hour before bed, listening to classical music and drinking hot chocolate.
Philip said: “When you’re living with someone with dementia, your routine gets knocked for six. So re-establishing, particularly that night-time routine, was one of the first things we did.”
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Philip and Charman, who have been married for 40 years and have three children, also tried to be more active, such as doing some light work in the during the day. And they used a light box to reset Charman’s circadian rhythm.
“We achieved better sleep for both, and for me a sense of being able to help Charman,” Philip said. “Having this support for six weeks brought me a bit more back into control.
“The situation when you’re living with someone with dementia can often feel like, where do I go next? This gave me some techniques.”
Philip said he would recommend the programme to others, adding: “Every single person is different with dementia but this is definitely something that has worked for us – and it could work for you.”
The UCL trial involved 377 people with dementia recruited from memory and older adult mental health services, and their family carers.
Half received standard care while the rest took part in the DREAMS START intervention. Their sleep was assessed before and after using a measure called the Sleep Disorders Inventory.
Levels of sleep disturbance were significantly lower among both people with dementia and carers who completed the programme, at four and eight months later.
Dr Penny Rapaport, a professor of psychological interventions in dementia at UCL, said sleep disturbances were a common problem and can mean sufferers have to leave their homes and move into care facilities.
She added: “Sleep medication can make people more likely to fall over and increases their risk of things like heart problems and death. It also doesn’t work very well so there’s a need for something to help people who are living at home.”
The team will check in with participants after two years to evaluate the long-term benefits. And they are considering whether the programme could be adapted for other conditions such as Parkinson’s disease.
It was delivered by facilitators who have a background in psychology but are not clinical specialists, making it cheaper to deliver than interventions requiring a doctor or nurse’s supervision, Dr Rapaport said.
She added: “It’s safe, it doesn’t cause harm. It has the potential to be rolled out widely in the NHS and make a real difference to the NHS.”
The findings were published in the The Lancet Healthy Longevity journal. The research was funded by the National Institute for Health and Care Research Health Technology Assessment programme.