Tracey Fox, a CQC Expert by Experience, shares how Lewy body dementia affects her father
Lewy body dementia is the second most common type of progressive dementia after Alzheimer’s disease dementia. Protein deposits, called Lewy bodies, develop in nerve cells in the brain regions involved in thinking, memory and movement (motor control).
This form of dementia causes a progressive decline in mental abilities. People with Lewy body dementia may experience visual hallucinations and changes in alertness and attention. Other effects include Parkinson’s disease-like signs and symptoms such as rigid muscles, slow movement and tremors.
In 2017 my father was diagnosed with Lewy body dementia.
I was living in the South of England at the time and my sister lived in Kent which meant Dad went through a very rough patch alone. I supported as best I could on the phone, making calls on his behalf, but it wasn’t adequate. He was hallucinating which distressed him, seeing people in his lounge and at times he worried about them being cold and not having anything to eat overnight. Initially he knew they were hallucinations but eventually it started taking its toll and he talked as if they were there.
I arranged for him to see his GP and follow-up referral, and he was put on medication. This proved to be the life line we all wanted and needed.
For the first six months, after the initial diagnosis, Dad became withdrawn. He was frightened and felt ashamed thinking his life was over. I relocated and now live three doors away from him and can support him completely. I remind him to take his medication, accompany him to medical appointments and have taken over his administration.
The medication has given him a new lease of life and he is still very capable. I’m lucky enough to be able to enjoy his company whilst being able to offer any support which is necessary. He can still get a bit of “sticky thinking” occasionally, which is part of the diagnosis, but we just deal with it as best we can at the time. Usually distraction techniques can work, but very occasionally he may have a distressing night because of the preoccupation with some thoughts. We discuss it the next day and see where that takes us. This has become a new normal for us as a family.
The ExE role is satisfyingly interesting and to be able to work in an area which has the influence to highlight services which may need to improve, and on the other hand to show those services that are doing well, is very rewarding. It is so important to give people who use services a voice and it’s something I’ve passionately believed in for many years.
October is Lewy Body Dementia Awareness Month.