My dad could see things despite being blind

Another Presence is a film exploring the experiences, particularly hallucinations, of those living with dementia with Lewy bodies. It was created with the support of Alzheimer’s Research UK’s Inspire Fund, which supports creative projects to build understanding of dementia.

On the launch of the film, Ellen shares her own experience of the diseases and how it resonates with the experiences shared in the film.

My Dad first started showing symptoms of dementia with Lewy bodies (DLB) when I was 13 and he was around 75.

He started to have really vivid dreams that were very real and frightening to him, so Mum and I took him to get a brain scan thinking maybe he had a brain bleed or tumour causing these sudden changes.

When he was later diagnosed with Lewy body dementia, which covers both Dementia with Lewy bodies and Parkinson’s dementia, we were relieved to know it wasn’t what we were thinking, but we had no idea how his condition would affect him and his life for the next few years.

They couldn’t initially say whether it was Parkinson’s disease or dementia with Lewy bodies because Dad’s presentation wasn’t ‘the norm’ but we did get confirmation that it was the latter.

Because DLB can present quite differently for different people, as it did for Dad, it is so important people have different ways to share their thoughts and experiences when living with or supporting somebody living with dementia with Lewy bodies and Another Presence gives a snapshot into some of these experiences.

What made Dad’s experience and symptoms fairly unique was the fact he was also blind. He started losing his sight when I was a toddler and could distinguish patches of light and dark but nothing more than this, then this stopped too.

So, when Dad started having hallucinations this was a very surreal experience for us all. He knew what he was seeing wasn’t real because he knew he couldn’t see, but that didn’t stop them being incredibly immersive for him. In fact, the first hallucination he had was of a boy in our living room, and he could picture our exact room from his memory, so he felt he had his sight back in that moment.

These early hallucinations were almost comforting. Animals coming and going and this boy who just came round for dinner. As dad wasn’t distressed, Mum and I just chatted to him about what he was seeing and took his lead on how to respond.

This is one of the reasons Another Presence really hit home to me. It illustrated how Dad’s symptoms may have looked to him, being even more poignant as the background was blank throughout.

Following his diagnosis, Dad became frail quite quickly and being blind seemed to emphasise his dementia so it seemed his progression would happen almost overnight every few weeks but in distinct stages.

As his dementia progressed and his memory started to become more affected, the hallucinations and nightmares became worse for him. Mum and I took it in turns to stay up all night and reassure him. At this time I was studying for exams so it was quite a difficult time.

He would need to escape his nightmares and try to get up but would take a long time to come round from his hallucinations. Because he couldn’t see we were there for him, we had to rely on touch and comforting sounds – Classic FM became a soundtrack to our lives in the last few years.

Aside from the more ‘invisible’ symptoms of his dementia, Dad had tremors very often and his movement became very stop-start.

He stopped wanting to go out in public very early on as he couldn’t see what was happening around him and then also started finding everyday coordination, like drinking from a mug, difficult.

Dad was an incredibly proud man and wanted to remain as independent as possible. When he started to become less alert there would be long periods in the day where he would just sit quietly or sleep. His world became all about me and Mum and the routine of different meals.

He never once complained or showed any fear towards his condition, he noted changes and remarked on the last time he was able to do things but took a lot of happiness in the small daily joys and conversations.

Despite being the third most common type of dementia, there is still so much misunderstanding around the complexities of dementia with Lewy bodies. This can be incredibly isolating for people when it is their whole reality.

Dementia with Lewy bodies is far more than just some memory loss, and the fluctuations in alertness and symptoms means sometimes you have the person you know back for a while, but then that part of them slips away again.

So, I would urge you to watch Another Presence and share it with your family and friends and on your social media channels so more people understand what it is like for those living with the disease.

You can watch Another Presence here. The film was made possible by Alzheimer’s Research UK’s Inspire Fund, which supports projects that raise awareness of the different forms of dementia and associated research to audiences that need it in a variety of ways.