Taking part in research after an early diagnosis: Graham and Jan’s story

Graham and his partner Jan say taking part in dementia research has given them a focus after his early diagnosis gave him a chance to join a trial.

The couple are participating in the TRAILBLAZER dementia study at the NIHR Lancashire Clinical Research Facility (LCRF). 

They want the chance to access a potential treatment currently unavailable on the NHS, to contribute to future dementia research.

Phase 3 of the trial showed the drug donanemab slowed clinical and cognitive progression by 35% to 60% over 18 months in patients with early Alzheimer's.

Because of his early diagnosis, research was seen as something that could help Graham and the couple have been attending the LCRF at Royal Preston Hospital for more than a year.

“I think it would have been different if we hadn’t taken part. We’d have felt more at sea,” said Graham.

“It allows you to focus on something – you can be positive at least something is being done.

“The team is fantastic – they make it comfortable for us. That’s the pleasure of coming here, because it’s a bit of journey and it’s not always easy to come here.”

Jan added: “We were fortunate in that Graham got an early diagnosis and straight away, even the GP said ‘TRAILBLAZER’!”

“And because the doctor comes in every time we’re there, you have the opportunity to discuss how things are going or address any of Graham’s concerns.

“The team is very professional and very friendly. We’ve got to know them and I’ve felt comfortable with them from the outset.

“They look after us in terms of hospitality. If we’re in the mood for chatting, they’ll talk to us and if we just want to read and sit quietly, they’ll leave us to it.”

The couple feel more people in similar situations would take part in dementia research if they knew the opportunities were available.

“Each of our friends and family had relatives who’d had dementia said they didn’t know you could take part in dementia research,” said Jan.

“So, I think it is important to get the message out that there are these opportunities, because people are looking for answers and looking for a cure - is there something that will slow dementia down? Or something that will help with the research?

“People know about cancer research - as soon as you get diagnosed people are aware you can take part, similarly with stroke, but with dementia, I don’t think enough people know. I think it has benefitted us.”

Jan added: “When I’ve mentioned Graham is taking part in research, they’ve all responded really positively.”

Graham is happy to continue to take part in research in the knowledge that others could benefit from it.

“I think it’s for the future, to help people in my position. It could conceivably help me too,” he said.

“I’d certainly be open to it yes. I’ve not ruled anything out and I’m certainly intending to persevere with this. It would be a decision we’d take together.”

Interested in taking part in dementia research? You can register your interest in other vital dementia research via the Join Dementia Research website. By taking part, you could make a huge difference for future generations.