Dementia and sensory challenges

I was known for having a good memory, but suddenly I couldn’t recall my clients’ names or how to do the x-rays. Eventually things got so bad that my boss suggested I get a brain scan. I never had a clue that it might be dementia. At the time I was looking after my Dad, who had dementia himself, but I didn’t think someone of my age could have it.

When tests revealed that I had early-stage dementia of the Alzheimer’s type, I was told by consultants that it was a long-term condition and there was nothing they could do about it. This was done in the kindest way, but offered no hope.

I didn’t see my Dad’s dementia as this awful thing as much as everybody else did. We were managing him – yes, it was at times a nuisance, but it had just become part of life. I thought we would just manage mine and deal with it day-to-day.

Initially, my family struggled; suddenly they’d lost this strong personality. It took them many years to realise I wasn’t going to be a ‘burden’ on them. We’ve created this other relationship now, with dementia as a partner in the family, like another brother or sister.

It took time to adapt to my dementia. I had put things in place for the memory symptoms, but then it began to affect my senses – with my vision first. I started to fall, my handwriting deteriorated and I was waking up blind in the mornings.

There wasn’t a lot of support out there for this, unlike the memory problems. Where were the professionals? Where was the information? In the end, other people living with dementia gave me tips, and I made up my own. We wrote a booklet called Dementia and Sensory Challenges. Amazingly, this has ended up going worldwide – 60,000 copies have been distributed so far.

I thought the booklet would be seized on by researchers, but when this didn’t happen, I realised I would have to take the research further myself. In 2016, I was awarded a Churchill Fellowship to travel to Canada and Ireland to meet with other people who have a diagnosis of dementia. I collected lived experience of sensory challenges and learnt more about coping strategies.

I’ve since received funding to write a handbook on sensory challenges which, with the help of my personal assistant, I have managed to do. Using the experience of my Fellowship, the handbook sets out what we can do about these challenges and where we can go for help.

I feel that when I was given a diagnosis of dementia, I had a choice: either sink into the corner and be ‘done to’ or take control of my life. I feel that I am leaving a legacy for others, so they can stand up and be a citizen and not a victim.

This blog post is based on an interview originally appearing in Elder Live-in Care. Read the full interview