Do researchers understand Lewy Body Nightmares

 I got involved with research into sleep problems in dementia recently,  thinking that it may involve Lewy body dementia too.

However it soon became clear that those asking the questions had no idea about what they were dealing with, and it seemed as if the whole process was set up for those in the later stages of Dementia.

Yet in Lewy body Dementia you are dealing with a different life style as far as sleep patterns go, and a lot of people simply don’t understand this. A few years ago Peter Ashley an old friend and myself, who at the time were both Ambassadors with the Alzheimer’s Society helped to write a booklet about Lewy Body Dementia, and this included the graphic nightmares etc. This was before the Lewy Body Society had got off the ground, or at least I had not heard about it, and it was only later on that Peter told me about it. 

After the first publication was released, it was then scrapped by a new editor, who thought it was too graphic and would frighten people, needless to say both Peter and I lost interest, because it was obvious that this person knew nothing about the horrors of this illness. So in future editions the nightmares were removed from the booklet, yet this left many wondering why.

Yet as many people have said, these graphic nightmares are all part of the nightly horrors many people living with this illness have to put up with. 

These can be horrific when they start, and sometimes very hard to break free from. While these are going on it’s possible that the person going through the horror can lash out and cause a lot of damage, as I found to my horror over time. I demolished two bedside lamps along with other things.

It’s worth pointing out that our loved ones can be hurt if they get too close when trying to walk us up, as my wife found out one night, and she ended up with a black eye, something which I found very distressing the next morning.  

While doing this research it was obvious that they wanted me to change my sleep patterns, which included going to bed earlier, but as I always wake up at 6-30: each morning I did not see the sense, and another idea was to go to bed much later, but as my wife pointed out I still get up at the same time, so that means less sleep.

It was pointed out that some days I drop off to sleep straight after lunch for an hour or so, and nothing wakes me up, not even a telephone ringing next to me chair. I have no control over this yet they said it was bad to sleep during the day. But I have no control over this it just happens and can be embarrassing if we have visitors in the house.