"Research has given us hope": Phillip and Barbara's Alzheimer's research journey

When Phillip began having memory problems, he and his wife, Barbara, knew something wasn't quite right.

Phillip recalls one particularly worrying early experience: "The first time it happened, I just blacked out. Everything just went black, and I didn't know what had happened."

The couple began what would become almost a year of appointments, tests and visits to the Memory Clinic before Phillip was eventually diagnosed with Alzheimer's disease at the age of 67.

Receiving the diagnosis brought mixed emotions for them both. "It was frightening," Phillip said. "It's not something you really want to be told, especially with the family history with my dad."

For Barbara, after such a long period of uncertainty, there was also some relief in finally having an answer.

"It had taken the best part of a year to get a diagnosis, so it didn't really come as a terrible shock," she explained. "In a way it was also a relief, because at least it wasn't cancer or a tumour or anything life-threatening in that sense."

Choosing to take part in research

Following Phillip's diagnosis, the couple were introduced to a dementia nurse, who explained the support available and asked whether they would consider taking part in research.

"We said yes," Barbara said. "Mainly because we wanted to help people in the future."

They were soon contacted by the Lancashire and South Cumbria NHS Foundation Trust research team and invited to take part in the TRAILBLAZER study, a clinical trial investigating potential new treatments for people living with early Alzheimer's disease.

Phillip enrolled in the study, while Barbara became his study partner, supporting him throughout his research journey.

"There was a 50% chance of receiving the study drug or a placebo," Barbara explained. "We don't know which Phillip is receiving, but we're happy to be taking part."

Finding hope after diagnosis

For Phillip and Barbara, participating in research has offered more than regular appointments with the research team.

"It's given us some hope," Phillip said. "Whereas if you're not taking part, there's no hope, so it's got to be a good thing."

The couple have also appreciated the support they've received throughout the study.

"The team have been absolutely brilliant," Barbara said. "So friendly, welcoming and fantastic."

Phillip believes research is changing the future for people living with dementia.

Helping future generations

Research has become particularly meaningful for Phillip because his father also lived with dementia.

"My dad would have taken part if he'd had the opportunity," Phillip reflected. "Years ago, people just carried on as best they could because it didn't seem anyone could do anything to help."

Barbara has also seen how much dementia care has evolved.

"When Phillip's dad was diagnosed, nobody offered him research or dementia nurses," she said. "It was simply, 'You've got dementia.' Things have changed."

Encouraging others to get involved

Looking back, neither Phillip nor Barbara have any regrets about saying yes to research.

"If this research leads to a treatment that helps people in the future, then that would be fantastic," Barbara said.

Phillip hopes others will consider taking part if they are offered the opportunity.

"If you can do something, then it's worth a try," he said. "You've just got to hope they crack it in time."

Ready to make a difference?

Every research study relies on volunteers like Phillip and Barbara. Whether you're living with dementia, supporting someone who is, or simply want to contribute to future discoveries, there are many ways to get involved.

Visit the Join Dementia Research website to find out more about taking part in dementia research and discover studies that may be suitable for you.