A glimpse into my dad's world of dementia

My dad was always a gentle, calm and peaceful soul, never one to be angry, frustrated or confrontational.   This all changed when he got vascular dementia. He became frustrated, angry, anxious and totally confused in the world he was living in.  I believe that the world  around him was so foreign, he didn’t know what else to do other than react to how he was feeling. 

His first stroke gave him visual agnosia.  Which meant his brain couldn’t tell him what he was looking at.  I can clearly see him sitting at the table eating his porridge; he knew he needed to add something to his porridge.  He picked up and looked at various items, and then decided to put margarine on his porridge.  In that moment I realised that his brain couldn’t tell him what he was looking at and he took a lucky (or unlucky) guess!

Mum also had dementia, so she couldn’t remember or understand that there was anything wrong with dad.  So, she would ask him to make a cup of tea, and Dad would stand in the kitchen looking bewildered, opening cupboards, with no idea what he was looking at.  Remarkably, over time, his brain was able to rewire and he could make a cup of tea with the right ingredients!

Initially I was frustrated with Dad, but over time I realised that I had to change the way I interacted with Dad to help him adapt to his vision changes. For example, giving dad a cup of tea meant lining it up in front of him for his tunnel vision.  Standing in front of him was the only way he could see you, but even then, he sometimes didn’t know who I was; usually when he was highly anxious and stressed.  Tunnel vision is a very common issue for people living with dementia, which is often missed and misunderstood.  Remember, when standing in front of a person living with dementia, it is important not to invade their personal space, and to get their permission first before physically connecting.   

I realised loss of colour contrast was another vision change dad experienced.  He had no idea where the toilet was.  White on white provides no colour contrast, which makes it very difficult for people living with dementia to navigate.   I learnt to guide his hand to the toilet seat so that he could feel it; he would then know what it was and often sit by himself.  This also helped with his lack of depth perception, which is another vision change that people with dementia often experience.  Guiding his hand to things like the chair, his cup, his cutlery etc gave him understanding and helped him to function better in his daily tasks.  

Vision changes for people living with dementia are very common, which I believe adds to their confusion, anxiety and stress.  We therefore need to think about our approach to people living with these vision changes.  We need to make them feel safe and give them the right support to encourage them to continue participating in daily activities and life.