EXCLUSIVE: Lynsay Jaques’ husband, Rob, was diagnosed with young-onset dementia in April 2024, aged 44, after almost three years of raising concerns with healthcare professionals
Lynsay Jaques’ husband, Rob, received the life-changing news that he was living with dementia(Image: Lynsay Jaques/Alzheimer’s Research UK)
A Nottinghamshire man who received a dementia diagnosis at just 44 years of age delivered a heartbreaking reaction upon learning about his condition via letter. In a crushing development during April 2024, Rob Jaques, now 45, received the devastating confirmation that he was suffering from young-onset dementia, specifically dementia with Lewy bodies.
However, for Rob, from Nottinghamshire, who had previously been diagnosed with Parkinson’s disease in 2015 (receiving his diagnosis after merely 24 hours), discovering this new condition would take nearly three years.
Lynsay, aged 40 and employed as a community nurse, has subsequently revealed the “frustration” she experienced during their challenging ordeal and described feeling unheard and not “taken seriously” both as a healthcare worker and as a spouse.
She acknowledged that the swift Parkinson’s diagnosis wasn’t “typical”, yet the “classic hallmarks” were “immediately noticed and diagnosed”. Nevertheless, regarding Rob’s dementia diagnosis, the circumstances proved entirely different.
Lynsay has opened up about the “frustration” she felt throughout their journey(Image: Lynsay Jaques/Alzheimer’s Research UK)
Lynsay explained: “It took three years of raising concerns to healthcare professionals and two bouts of Rob being significantly distressed and unwell in hospital, to agree that his symptoms were not only related to Parkinson’s but to a form of dementia.”
When they eventually received confirmation of Rob’s secondary condition, the information arrived via letter, one month prior to their scheduled consultation with a neurologist. Upon reading the correspondence, Rob’s reaction would prove devastating.
Lynsay recalled: “I remember Rob said, ‘I don’t know why she’s written that’. 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.”
Upon opening the letter, Rob’s response would prove utterly heartbreaking(Image: Lynsay Jaques/Alzheimer’s Research UK)
Discussing Rob’s Parkinson’s diagnosis, Lynsay explained that he had initially consulted his GP regarding pain in his upper arm and how he had been dragging his foot whilst walking.
After being advised to attend A&E, Rob received his diagnosis that same day. She described how it was “wrong” that it was a case of Rob becoming acutely ill in hospital for “people to take notice”, stressing that it “shouldn’t be like that”.
Lynsay continued: “I feel like once we had Rob’s Parkinson’s diagnosis, we were put in a box. So any other symptoms – like his memory problems, processing issues, hallucinations and thrashing in his sleep – were attributed to that condition or to depression.”
Indeed, she claimed Rob wasn’t offered physical tests to confirm the condition, reportedly because he’d already received such tests whilst undergoing investigations around the time of his Parkinson’s diagnosis.
Rob and Lynsay have shared their story in a bid to raise awareness(Image: Lynsay Jaques/Alzheimer’s Research UK)
Moreover, Lynsay revealed that upon receiving the news, there was no immediate “emotional support”, and they were told a follow-up would occur in nine months’ time.
Rob and Lynsay have shared their story to highlight the need for improvements in the dementia diagnostic process, and have since discovered Join Dementia Research through Alzheimer’s Research UK.
Lynsay further stated: “One of the reasons we support Alzheimer’s Research UK is because we want everyone living with dementia to have access to a timely and accurate diagnosis.”
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.
You can add your name here
