Our consultant Admiral Nurse Rachel Thompson has been finding out what life is like with sleep disturbance caused by Lewy body dementia from married couple Melanie and Keith.

Keith lives with Lewy body dementia and began experiencing sleep disturbances over 30 years ago. They made a visit to their GP and at the time, nobody realised that it may have been the start of the Lewy body symptoms, especially as some of Keith’s family members also experienced problems with sleeping.

“We just thought that it ran in the family.”

Melanie explains how Keith often acts things out during the night, sometimes prompted by what he’s been watching on the telly, and that he can become physical without knowing – however this is worlds apart from his personality when he’s awake.

He might shout or scream, try to break furniture or move objects around the room.

But Melanie said: “You couldn’t meet a kinder, gentler person. But Keith asleep is a different thing altogether.”

She explains how it affected her job when she was still working as a manager at a supermarket, as she would usually be woken up three to four times per night and struggle to get back to sleep.

Melanie now cares for Keith full-time and says that a routine helps to reduce his disturbances, such as going to sleep and waking up at the same time every day, as well as taking a scheduled nap.

Keith also uses melatonin and the medication mirabegron to manage his symptoms which are currently making a “big difference”.

You can watch the full chat with Melanie and Keith above.

For more information about symptoms of Lewy body dementia, please visit: https://www.lewybody.org/information-and-support/symptoms/