My dad and Lewy body dementia

As you may know, dementia doesn’t just affect the person living with dementia – it affects entire families. 

Our very own Customer Service Manager, Sue, wanted to share her story about her dad, who lived with Lewy body dementia. One of the most common forms of dementia, but one that is less well-known…


Sue’s Story

The first out of the ordinary occurrence with my dad was when the shed key went missing. He was forever in and out of the shed and the garden, always doing something.

One day, he looked for the shed key and couldn’t find it (fortunately we had a spare!) It was missing for quite a long time, eventually turning up in the sugar bowl!

We had many a laugh about that – me, mum and even dad himself. Then mum and I noticed that dad started walking with somewhat of a shuffle in his step. Putting it down to laziness and his slippers(!), we were constantly telling him to pick up his feet. He did for a short time and then reverted back to the slight shuffling.


Looking for a diagnosis

tea cupA few more things happened over a period of time until, eventually, our GP referred him to a specialist in Parkinson’s Disease, as his symptoms were very similar to the onset of that condition.

We went to the hospital with him and were all very relieved when the specialist confirmed that he did not, in fact, have Parkinson’s Disease. We were delighted.

Over the coming months, my mum became ill and spent quite a lot of time in hospital. I still lived with both of them and was looking after dad as well as visiting mum each day at the hospital.

I had noticed that dad had become a little more withdrawn but put that down to mum being in hospital. He was still his same cheery self in most respects, though, and was still more than capable of making a sandwich and a mug of tea for himself whenever needed.


Losing mum

Mum died in February 2002, which left just dad and myself at home. Some time earlier, I had bought him a combined TV/video for the bedroom and he would go to bed around 10pm each night and watch the TV and sometimes a video until mum went to bed later. 

After mum died, dad would still go to bed early but began to struggle using the remote control – switching it on, changing channels and such things; he just couldn’t remember how to do it. Then he became unable to comprehend how to use the TV/video despite how many times I tried to explain to him. 

A couple of months after mum died, I heard dad in the middle of the night shouting out. When I went to see what the matter was, he told me that we shouldn’t be in the house as a friend of his had dared him to come in and the police would be coming round to arrest us if we didn’t get out. After some time calming him down, he went back to sleep.

There was another episode of this type just a couple of weeks later and so I contacted the GP to see if he could find out what was going on.


Finally getting a diagnosis…

A short time later, a Consultant’s Registrar visited dad at home and did some cognitive tests with him. After having also spoken to him for a short while, he told me that he was pretty certain he knew what the problem was – Lewy body disease (he didn’t use the word dementia).  

I’d never heard of it.  The Registrar said he would go back to his Consultant and report on the visit.

lewy body dementia diagnosisFollowing the visit, we made an appointment to see our GP and he, by then, had received the report from the Consultant and prescribed the medication as per the Consultant’s instructions. 

Over the coming months, dad’s condition deteriorated in a number of ways; having always been fully active, he became less mobile and at times was prone to fall. Then he shut himself out of the house (which he had also done some months earlier when mum was still in hospital). 

His shuffling got a little worse and his ability to understand any type of technology was very much challenged. But he still loved to watch his sport!

He did, however, remain his lovely usual self and knew that whatever I did for him was the best I could do. My dad was always my hero and, to this day, remains so.

There came a time just a few months later when he became unable to stand up by himself. He had no strength whatsoever in his legs. He was taken into hospital and then, after a few weeks, was transferred to a ‘rehabilitation’ centre. I think this was just a term that was used. 

There is no rehabilitation for a person with Lewy body dementia. But he was looked after in there for a couple of months. 


Making decisions

Eventually, the decision had to be made as to whether he could come home and be looked after or go into residential care. This was my worst nightmare. I am not medically trained and would have been unable to lift him in the event of a fall. 

I still needed to work and so with these things being taken into account, after some terrible soul searching, the decision was made to put him into residential care. I was heartbroken. 

Fortunately, he was placed into a good residential home and they took care of him for the rest of his life, which was just over 12 months. I visited him every evening and was with him for most of the weekends, too.


Sue-2Living with Lewy Body Dementia

He still understood parts of conversations and was able to recognise people, although not necessarily anyone he didn’t know too well. But he always had a cheery hello for everyone. 

Dad had helped people out with things all his life – he was just that kind of person – and it was hard to watch him now have to rely on others to do everyday things.

After being in the home for just over 12 months, he became ill with sepsis and was admitted to hospital. They discharged him about a week later and he went back to the home. However, within two days he was back in hospital.  He never came out, passing away peacefully just 24 hours later; I was there holding his hand.

Dad never had much illness at all throughout his life. To see him go through the process of dementia was devastating. At that time, little was known about the disease and it’s probably only in the last handful of years that there is more awareness. 

The parallels between Parkinson’s Disease and Lewy body dementia are many fold. Misdiagnosis is quite common with Lewy body dementia, particularly in the early stages.

All types of dementia are terrible, for the people living with the condition and also their families and friends. We know there is research being carried out on all these conditions and, hopefully, one day we can stop the onset or at least control the effects.

We know how helpful it can be to read other people’s experiences, which is why we created this free e-book for you to download…

About the Author

Sue West

Customer Service Manager,

Sue is our fantastic Customer Service Manager, who’s passionate about helping all of our customers. So she was delighted to be given another chance to help by sharing her story.

Sue's working background has been largely in the role of personal assistant and also events co-ordinator.

Used to communicating with people both face to face and on the telephone, her customer service skills have developed over the years.