Living with Alzheimer's Disease
A grandfather who was diagnosed with young-onset Alzheimer’s disease is looking to raise as much awareness of it as possible.
Graham Herbert, 66, was diagnosed last year. Alzheimer’s disease is a physical illness that damages the brain, and is the most common cause of dementia.
He said: “Towards the end of 2021 I kept saying to my wife Jan, ‘For goodness’ sake, I keep forgetting my words,’ and she said why don’t I see the doctor.
“If she hadn’t suggested I go, I probably wouldn’t have done.”
His GP referred him to our North East Essex Dementia and Frailty Services and staff at the Crystal Centre, based on the Broomfield Hospital site in Chelmsford, tested his memory.
They referred him for an MRI scan at another hospital, which showed the right side of his brain had shrunk and he had probably had Alzheimer’s since he was 61 without realising.
He said knowing it’s a physical and mental attack on his brain is difficult to cope with and he can get “very depressed.”
The disease has affected Graham’s confidence and day to day life, to the point where he is not always comfortable speaking to people for fear of forgetting words.
“Sometimes if I’m at home, even if my wife is at home, I don’t talk a lot,” he said.
“Where I used to forget words occasionally, it’s now every time I talk.
“I can’t read like I used to. I can read the words but I find I can’t books because if I read a chapter today, I forget what’s been happening tomorrow and I can’t keep up with the storyline.
“I get a headache every day. It lasts a good couple of hours, sometimes it’s so bad I want sit down and don’t want to do anything.”
However, he is still fit enough to drive and remains busy and active.
Following his diagnosis, he was put in touch with the Alzheimer’s Society, and takes part in several group activities including walking football, four singing groups, organised walks, and Zoom meetings with other people from across the country with young-onset Alzheimer’s.
It has given Graham and Jan, who also accompanies him, the chance to meet other people who understand what they are going through. The activities also help with cognitive function.
“If these didn’t exist, the chance are I would probably spending most of the time at home,” said Graham, who used to work in a pharmacy.
Jan said: “Graham was very depressed as you would be when you first get diagnosed. This is something we can do and it just helps you realise that your life isn’t over.
“The way people see it, they think if you’ve got dementia you’re going to be 85 and senile and not know who anybody is.
“People don’t think of it as a slow, progressive thing and I think that’s one of the things there needs to be more awareness of. There’s a lot of people walking around with it and you can’t tell by looking at them.
“Either you can face up to it now and get on medication to slow it down, or wait two or three years until you’re much worse and that medication won’t work so well.”
Graham is trying to raise awareness of the disease for as long as he can, to help other people.
“At the moment I’m a lot better than some of the people I meet up with. I’m very keen while I can to tell people who don’t have dementia what it’s like and how to deal with people who do have it.”
He is among volunteers who work with the Alzheimer’s Society to educate businesses and organisations about how to make their buildings and services more inclusive.
For example, people with dementia find it harder to see objects if they are the same colour as the surrounding environment, such as a white toilet in an all-white cubicle, or a black box against a black wall.
Graham feels it’s important that people take dementia seriously. He would like to see more patience and empathy, as well as more support.
“I find it really depressing that I have been attacked physically as well as mentally by this disease,” he said.
“For me, it’s important for people to know having dementia is just as serious as having something like a heart attack or cancer.”
September is World Alzheimer’s Month, which is organised by Alzheimer’s Disease International to raise awareness and challenge stigma surrounding Alzheimer’s and dementia.
This year’s campaign, ‘Never too early, never too late’, focuses on the factors that increase the likelihood of developing dementia and what we can do to reduce our risk.
One in three people born today will develop dementia in their lifetime.
the Alzheimer’s Society offer help hope for everyone living with dementia.
For more information and support, please visit their website.
You can also visit the Alzheimer’s Disease International website.
Our Trust offers a wide range of services to support people with dementia. You can find out more on our services page.