I have written before about my father’s dementia. He was diagnosed with mild cognitive impairment in June 2018. His neuro-psychological test results indicated significant memory difficulties, but he was managing life well at that time and the photograph that I showed the consultant of his carefully cultivated vegetable garden, and his reports of daily shopping trips to the supermarket on the local bus, convinced her that he shouldn’t have a full diagnosis of dementia at that time. 

In a couple of weeks, he has an appointment for a follow up assessment when he will be required to answer a large selection of questions again. My expectation, this time, is that the outcome will be conclusive. 

I took my parents on a short holiday recently. We rented a small house which afforded each of us our own bedrooms. It was nice to get away and spend time with them, and this gave me a chance to watch my Dad more closely on a day-to-day basis, to get a sense of how he is functioning. 

Unsurprisingly he was often confused about where different rooms were, and, at times, he asked, “Where is this place?” and “When are we going home?” He struggled to find the downstairs toilet in the daytime and the bathroom at night, and he would often ask what day it was, and wonder about the time. 

His walking ability was also much worse than I realised: he shuffles his feet along on the ground, and on one day, he tripped up a pavement and fell. He wasn’t badly hurt, but a bit shaken. As someone who has a propensity to fall myself, I can completely understand how a person’s confidence is affected, and this might be one reason for his shuffling, he is trying to keep his feet in contact with the ground. There may be other health reasons for his walking difficulties too (he has type 2 diabetes for example) but dementia can cause balance problems, so this might be a part of the overall picture. 

One of the symptoms of dementia is difficulty in making sense of the surrounding environment. Objects and images can often be mistaken for things that they are not. Particularly when something unusual happens, or the person is in an unfamiliar place, disorientation and confusion can be aggravated. 

A specific incident during the week stands out. It was the middle of the night – something like 3am – and I heard my Dad up and about, so I got up to find out what was happening and to check that he was alright. I found him walking up and down the landing looking at the ceiling, not agitated, but clearly focused on something that was concerning him. “There’s a fire”, he said, “A fire in the roof. I saw it and I need to sort it out.” 

At first, I thought he had been dreaming, had woken up startled and was trying to solve a problem that appeared to be real to him, but was simply in his dream. “Go back to bed, Dad,” I said, “Everything is fine, there isn’t a fire.” But he was intent on fixing it. This was a problem that needed his attention. He wasn’t going to be persuaded that there wasn’t a fire, because he had seen it. “It’s red,” he said, “in the ceiling”. 

At this point I went into his bedroom and I saw immediately what the problem was. There was indeed a red glow on the ceiling. It was an image projected from a digital clock on the bedside table. The type of clock that displays the time onto the ceiling so that you can see immediately what time it is whilst lying in bed without having to move or turnover to look at the clock. A device that was totally unfamiliar to my Dad. When he woke up in the night, he saw a red light on the ceiling. Without his glasses he would not have been able to tell that this was an image of digits and, in any case, would not have expected to see a red light shining in the ceiling. He had mistaken the red glow for a fire. Perfectly sensible in the circumstances.  

Fortunately, I was able to explain what the red light was, and he looked at the clock and saw immediately what it was and how it was causing the red light. I took the clock away and he went back to sleep. In the morning he could remember nothing of the incident, and all was well. 

It is common for dementia to affect a person’s visual perception. Damage in certain parts of the brain responsible for interpreting visual cues, can cause the person to make their own sense of what they see. Looking at the world through their eyes – putting ourselves in their position – will help us to understand their world and how, at times, it can be frightening and distressing. 

My Mum slept through the ‘fire in the roof’ incident with my Dad, but I explained it all to her in the morning. She completely saw how easy it would be to misinterpret the red light in the ceiling, if you suddenly wake up in the night and see an unfamiliar red glow, without wearing glasses. 

Filmmaker, Simon Ball, produced an excellent short film about visual perception with people with Posterior Cortical Atrophy (PCA) – “Do I see what you see?” – which can be watched here. PCA is a rare type of dementia that particularly affects visual perception, but this can be a symptom of any type of dementia.

Please contact me if you have an experience to share: barbara@livebetterwith.com

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