One of our founding members, Lynsay, has bravely shared a glimpse of the diagnosis process she and her husband Rob went through. It is a story that highlights just how difficult the path to a dementia diagnosis can be, and why change is so urgently needed.
Rob was just 35 when he was diagnosed with Parkinson's disease — a diagnosis that came within 24 hours of seeing a doctor. The classic hallmarks were immediately noticed. But when it came to concerns about his memory, processing difficulties, hallucinations, and disturbed sleep, it was a completely different story.
For three years, Lynsay — a community nurse and healthcare professional — raised concerns with doctors, only to be dismissed. Rob's symptoms were attributed to his existing Parkinson's diagnosis or to depression. As Lynsay puts it: "I feel like once we had Rob's Parkinson's diagnosis, we were put in a box."
It took two bouts of Rob becoming significantly distressed and unwell in hospital before healthcare professionals finally agreed that his symptoms pointed to something beyond Parkinson's. At 44, Rob was diagnosed with dementia with Lewy bodies — but the news came not in a face-to-face conversation, but in a letter, one month before a scheduled neurologist appointment.
"I remember Rob said, 'I don't know why she's written that'," Lynsay recalls. "I was very upset, both about the letter and Rob's lack of understanding. In the appointment, the neurologist confirmed the diagnosis. When she finished talking, she said 'I'm sorry', and Rob replied 'For what?'. I think him forgetting so quickly was a light bulb moment for her — she realised what I'd been raising about his memory all along."
The main emotion throughout their journey has been frustration. "I feel like I haven't been listened to or taken seriously. And I'm a healthcare professional, as well as his wife," Lynsay says.
Rob was never offered scans to confirm his diagnosis or information about research opportunities. Once he received the news, there was no immediate emotional support, and they were told there would be a follow-up in nine months' time.
Rob and Lynsay have since learned about Join Dementia Research through Alzheimer's Research UK, and they continue to advocate for better diagnostic processes. Their story is at the heart of why REDS exists — because no family should have to fight this hard just to be heard.
As part of its Dementia Unseen campaign, Alzheimer's Research UK has launched a petition to make dementia diagnosis a right for everyone living with the condition.
