“I wish someone had told me in the beginning what it [sensory symptoms] was.” Helen
Many people think dementia is all about memory and forgetting, but for many people it involves much more than this. Agnes Houston is a person with dementia who experiences sensory and cognitive challenges. As Agnes spoke to other people with dementia she found she was not alone, but that there was very little written about sensory challenges and dementia and so people struggled feeling they were the only ones with these problems. With the funding for the Life Changes Trust, Agnes has produced a leaflet which explains how dementia affects the senses and impacts on people with dementia.
Agnes’ booklet – Dementia and Sensory Challenges – draws on the experience of people living with dementia from several countries who talk about the sensory challenges they have with dementia. In her research, Agnes found that people with dementia had similar sensory problems regardless of their age, so the problems weren’t just due to age alone. She also found that sensory problems made memory and other cognitive impairments more difficult. Some people had problems with their spatial awareness and with processing visual information. For example, they didn’t see steps and tripped over or had double vision. Others had problems with perception, for example seeing a black mat as a hole in the ground. When people saw the optician, it was clear they had good eye sight, the problem was how their brains interpreted what they were seeing. Agnes calls this ‘Brain Blindness”.
“In shops they always have a big black mat and that looks like a hole, so it is perception and a leap of faith to actually step on to it.” Tommy
“I started tripping over a lot … it wasn’t seeing the steps…I saw the optician and my eye sight’s fine.” Chris.
Other people had problems with hearing, being hypersensitive to noise and information overload. Some people found that words got missed out, or were unable to think in a noisy environment and getting angry with high noise levels.
“In noisy environments I just can’t think…my brain shuts down.” Agnes
“Difficulty with loud noise … this has a huge impact in my life .. social and family.” Helen
Some folk also had problems with touch, taste and smell. For example not being able to differentiate between hot and cold, changes in appetite and sense of smell, feeling the cold. Finally Agnes found that some people had hallucinations – visual, vivid dreams, smells and auditory.
“Everything is quite bland now so you don’t want to eat.” Archie
“My taste has changed…never liked coffee now I am mad about it…” Liz
“I think I heard a noise in the house and I am looking for it and there is nothing there ..” Alan
Agnes asked people what helped them. The things that made difference were having more time process information, wearing the correct glasses or hearing aids and making sure they are clean and working; improving the environment by having bright light or quieting the room. Explaining to others and understanding what is happening, helping to calm and slow things down can also make a big difference. People around can help by understanding dementia, offering reassurance, being calm and not trying to correct the person with dementia.
So if you want to help someone who might be having sensory problems, then talk calmly, remove excess noise or busyness in the environment; be reassuring and don’t try and correct them. Think information overload and think how frightening and disorientating it must be.
Donna, Agnes’ carer and daughter helped with the booklet and she identified 4 themes running through the stories:
- Awareness – being aware that dementia is about more than memory and that people can have sensory challenges too
- Acceptance – of the problem and addressing it
- Adaptation – taking steps to manage the problem by creating an environment which supports people
- Avoidance – avoiding environments and situations which make problems worse
There is also a FILM where people with dementia discuss their experiences which shows the lived experience of people with dementia where people explain what it’s like in their own words.
As Agnes says:
“We are ordinary people living ordinary lives, who happen to have a long term condition called dementia. Please help us to continue to live in our homes and our communities, which is something we can do very well if society understands how to support us and our sensory challenges.”
Thank you Agnes and the Life Changes Trust!!