How It Feels To Have A 50% Chance Of Developing Dementia

It’s too late for my mum, but by participating in research I have gained back a bit of control
HuffPost UK

It always felt a little strange as a child because no one else’s grandmother was the way my Nanny Nip was. I really didn’t understand what was wrong with her and why she was the way she was.

She developed Alzheimer’s disease in her late 40s and I remember my mum helping my grandad and other family members look after her.

Eventually she had to go into a care home. We would visit every Sunday and I always remember my mum getting really upset when we left and saying ‘please don’t ever let me end up like that’.

Unfortunately, some years later we noticed a change in my mum’s behaviour. She had various tests at University College London (UCL) and tested positive for the mutation in the APP gene, which runs in our family. A few months later she was diagnosed with early-onset Alzheimer’s. She’s now 58 and lives in a nursing home.

After my mum’s diagnosis I felt useless, so I decided to get involved with clinical research. It’s great to know I’m doing everything in my power to help change mine and my family’s future.

It’s too late for my mum, but by doing this I have gained back a bit of control and I know how important research has been to her.

Every couple of years I undergo four days of various memory and cognitive tests, along with MRI scans, PET scans and a lumbar puncture. These give the incredible scientists vital data that will hopefully help them stamp out dementia one day.

I have a 50 per cent chance of inheriting the faulty gene, but I haven’t been tested yet, so don’t know my fate.

When I turned 30 last year I made a ’20 things to do before I’m 50’ list – 50 because that’s the age my mum was diagnosed and 20 because that’s how many years away I am from that age.

One of the things on the list was to run a race. As I don’t do things by halves, I applied for a London Marathon place with the Dementia Revolution and much to my amazement (and horror) I was offered a place.

I have never done anything like a marathon before and although it is very exciting, I am terrified!

The training is so tough, especially as most of it will be during the winter with dark nights and cold air. But I am a very stubborn person, so I know I will finish – even if I have to crawl across the finish line.

My family and I have been through some tough times since my mum was diagnosed and to be completely honest there have been more bad times than good.

The doctors and researchers at UCL have been incredible with my mum and have helped her any way they can. Elsewhere not all healthcare staff have been so great.

In my experience it’s often felt like my mum has been treated more like a threat to society, rather than as a terminally-ill person requiring support and care, and I want us to change that.

I hope the Dementia Revolution can really make a difference in powering groundbreaking research. There are no survivors of dementia and we need to change that.

I also hope that by raising awareness of dementia we can ensure people living with the condition are cared for properly and with dignity from diagnosis to death, and ensure families like mine are supported too.