Approximately 800,000 people in the UK have dementia. The vast majority of those are diagnosed after the age of 65 – but around 17,000 people have been diagnosed with dementia in their early 60s, 50s, 40s and, in some cases, 30s. On Tuesday February 4 at 10 a.m., Victoria Derbyshire will broadcast from the country’s only dedicated day support service for young people with dementia. It’s called the Young Onset Dementia Centre and throughout the program we’ll hear from some of the people who use its services and their family and friends.
One of the people you’ll hear from is Ronnie Lomax. He’s 53. He was diagnosed with a type of dementia 12 years ago at the age of 42. He wanted to write this blog for 5 live about living with dementia:
“Forgetting names, forgetting faces. That’s something that happens to old people isn’t it?
“I was diagnosed with dementia 12 years ago. I was 42. I was the Duty Manager at a big leisure complex in Wythenshawe in Manchester, a Club Coach for the British Judo Association, I coached weight training and I was active and respected in my local community. I worked as a special constable. I was fit.
“I’m married to Elaine and we’ve got four children and 11 grandchildren. In 2000 I noticed that simple tasks were becoming more difficult. Like remembering phone calls I had minutes before, problems spelling words I knew I knew, and remembering discussions I had with people.
“I woke up one morning in 2002 with no feeling down my left side. I’d had a stroke. I couldn’t communicate, I had to retire from my work and after two years of speech therapy and occupational therapy I started to return to normality with the support of my family.
“When I eventually got an appointment to see a neurologist I was told my brain scan was clear and I probably had Munchausen’s Syndrome, or it was all in my mind.
“My family and I were totally dumbfounded. I was still forgetting things. I started questioning myself. Was I ill or was the doctor right?
“I had been going to a memory clinic and when I told them what the doctor had said I was sent for a SPECT scan – single photon emission computed tomography.
“I was told that I had vascular dementia – the second most common form of dementia after Alzheimer’s disease. It is caused by problems in the supply of blood to the brain. My dad died when he was 45 and my brother when he was 29. I didn’t realise that it was all to do with a family history of really high blood pressure.
“After we got the diagnosis I had many mixed feelings. I was angry because of the missed diagnosis. Worried about what was going to happen next. Guilty for what my family had gone through – especially my wife. Then I felt relieved – in part – because there was a medical reason behind my changes. So what is it like living with dementia? We are our memories; dementia takes away your memories, and you, a bit at a time. It can get quite upsetting when you forget names, especially those close to you. Grandchildren and other family members and friends.”
“Knowing what you want to say, or how to say it can become challenging and difficult for the people around you. Those who know you start to fill in words or correct what you have said.
“On a daily basis you feel that you are at war with yourself hoping for clearer days ahead. From a memory that has come to the surface and then gone. Wanting to say something and then it’s gone. Trying to capture a picture, a thought – then it fades away. We have to live for the moments we are in. Because our history of life, who we are, is slowly draining away.
“I’m bidding for money to get equipment here like a flat screen smart TV, laptops and a color printer. I’m going to be using the service for years. I need to do this while I still can.”
Gary Chandler is a prion expert. He is the CEO of Crossbow Communications, author of several books and producer of documentaries about health and environmental issues around the world. Chandler is connecting the dots to the global surge in neurodegenerative disease, including Alzheimer’s disease, Parkinson’s disease, Creutzfeldt-Jakob disease, chronic wasting disease and other forms of prion disease. The scientific name for prion disease is transmissible spongiform encephalopathy.