Derry man's shocking four year dementia diagnosis wait

“I went to the doctor in June 2018 and was diagnosed in April 2022.”

Two months shy of four years, that is the shocking length of time Graham, a Dementia NI member from Derry, had to wait for his young-onset dementia diagnosis.

“That was from initial referral to receiving a diagnosis,” Graham told Derry Now.

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“I first went to my GP because I was having a few issues around memory with dates and times and people,” he explained.

“My doctor did a memory test, which started the ball rolling. She said I hadn’t scored too well on the memory test, so she referred me to the memory clinic. 

“It took a few months for that referral to come through. I then sat  down and did a very similar memory test with them. They then discussed that with their colleagues and the process of diagnosis rolled out from there. 

“I am told there were three brain scans, a few more memory test meetings, and a few more meetings with a specialist because of my age. With young-onset dementia, they are hesitant to diagnose and they try to fob you off with different things.”

He added: “Everything is taken into consideration - your medical history, weight, height and family history. There is no family history of dementia in our family, either parents or grandparents.

“They build up a picture and then they talk to their colleagues, constantly. There is a meeting every couple of months. 

“Once you are diagnosed, which has to be done by a consultant, you are referred to your Trust’s dementia navigator, and you are never seen again, by anybody. You are diagnosed and good luck, basically. ‘Get your affairs in order’ is what they normally tell you. 

“The dementia navigator takes over and then, brilliantly, people like Dementia NI step in. Your dementia navigator, a nurse, will come out and assess you in your home. They will have a chat and see what your needs are and then signpost you to other services, like Dementia NI.”

Crucially, people must get a diagnosis of dementia before they can receive medication. 

“That is why it is so important to get an early diagnosis, said Graham, “because you can’t get medication until you get your diagnosis and you might need to try different medications before you find the right one.”

Graham said the time taken to get his dementia diagnosis caused “a major amount of stress”.

“Especially because you don’t really know what’s going on. You are not sure if you are having a nervous breakdown. I had an idea because of my symptoms. It causes stress within the family because no-body knows what’s going on. It generally makes life harder and the impact on mental health is difficult.

“It is like living in a fog. Mornings for me are very slow. It takes a while for everything to start working properly. I don’t like being asked questions or being talked to in the morning. It takes a while. Everything takes longer and life is a little bit slower. 

“You can’t process it as quickly and that was strange. And as that went on, no-one was able to tell you what was the cause. It was just, next appointment, next appointment, next brain scan or whatever and nobody tells you anything in the meantime because nobody wants to give you any false hope or the other way around. It is a long drawn out process.

“I was a volunteer. I did that every day during my diagnosis and I still do it. I find it a little bit harder remembering names now. I am also  terrible for appointments.

“Even though I have a calendar here, with everything written on it in big bold writing, I am still turning up on the wrong day at the wrong time.

“Dementia has its challenges. It is stressful. I have not told a lot of people. Professionally, anyone I shared the diagnosis with has taken a step back. My bank won’t even deal with me anymore. They deal with my wife.

“We have to do a thing called enduring power of attorney, if I get to the stage where I really don’t know what’s going on. However, the bank took that as activated immediately.

“They will only deal with my wife now so things like that are strange. Handling money and information is quite hard at the minute.”

Notwithstanding, Graham said he felt “relieved” when he finally got his diagnosis.

“Because I thought, ‘Now we can get help’. Because, until you get the diagnosis, to be honest, no-one will touch you because, obviously, they are not sure and they don’t want to jump in and start doing stuff if there is no diagnosis because there are a few other things it can be.

“It can just be a mental health issue. It can be depression. It can be lots of different things.

“So, when you get a diagnosis and meet the dementia navigator, they can signpost you to Dementia NI and one of its empowerment groups.

“Getting the diagnosis was still a shock, don’t get me wrong, but it is a relief. The downside of my diagnosis was it was done by video link. I think sitting in front of somebody and giving them their diagnosis would be better. It was myself and my wife in a room with a 70 inch video screen.

“It was basically, ‘Yes, we have looked at all of your charts. You definitely have. Alzheimer’s. You need to get your affairs in order. Any other questions?’ and that was that.

“I get fantastic support from Dementia NI. Our empowerment group has a facilitator and a volunteer to help out. It is just about meeting together and not having to explain yourself.

“There is support there. Dementia NI has lots of different activities going on. We get out and help / volunteer at different events, fundraising, doing awareness raising events, such as the recent dementia conference in the city.”
Graham said people were quite surprised when they found out he had young-onset dementia. 

“Everybody thinks dementia is an old person’s disease,” he said. “It is also about challenging the stigma, which is why it is great that Dementia NI gives us the platform to go out and do that because we are the people with the experience of dementia.”

Dementia NI members are often to be found at stands in supermarkets and community events informing people about dementia. 

“We talk to people about dementia and let them know there is hope,” said Graham. “You can very much live well with dementia.”

Graham said he would advise people to keep pushing for a diagnosis all through the process. 

“The waiting times for a dementia diagnosis need to come down, especially if there is medication that, if it is given quicker, helps. The medication I am on does not cure dementia but for some people it slows down the progression. 

“I would just like to get the word out there, if you are struggling in any way at all, if your memory is starting to slip, go and talk to your doctor, because there could be something there and the more people who talk about dementia, it is not a stigma anymore.”