Nottinghamshire Man’s Heartbreaking Dementia Diagnosis Journey

A man from Nottinghamshire, Rob Jaques, received a diagnosis of dementia at just 44 years of age, leading to a profoundly emotional response when informed of his condition. In April 2024, Rob, now 45, learned that he was suffering from young-onset dementia, specifically dementia with Lewy bodies. This diagnosis followed a previous confirmation of Parkinson’s disease in 2015, which had been established within just 24 hours of his consultation.

Rob’s wife, Lynsay Jaques, a community nurse aged 40, expressed her frustration regarding the lengthy process that led to the dementia diagnosis. She felt unheard and not taken seriously, both as a healthcare professional and as a spouse. Lynsay noted the stark contrast between the swift diagnosis of Parkinson’s and the extensive time it took to address Rob’s symptoms related to dementia.

“It took three years of raising concerns to healthcare professionals,” Lynsay explained. “It was only after two significant hospital stays due to Rob being unwell that they acknowledged his symptoms were not solely due to Parkinson’s.”

The confirmation of Rob’s dementia diagnosis arrived in a letter, one month before a scheduled appointment with a neurologist. Lynsay recounted the moment Rob read the letter, stating, “I remember Rob said, ‘I don’t know why she’s written that.’ I was very upset about the letter and Rob’s lack of understanding.” During the appointment, the neurologist confirmed the diagnosis, expressing her regret with, “I’m sorry,” to which Rob responded, “For what?” This interaction highlighted the severity of Rob’s memory issues, which Lynsay had previously raised with healthcare professionals.

Reflecting on Rob’s initial Parkinson’s diagnosis, Lynsay shared that he had sought medical advice due to pain in his upper arm and difficulty walking. After being directed to attend an emergency department, he received the diagnosis on the same day. Lynsay criticized the healthcare system, stating it was “wrong” that Rob had to become acutely ill in hospital for his symptoms to be taken seriously.

“We felt that once Rob was diagnosed with Parkinson’s, we were placed in a box,” Lynsay said. “Any new symptoms, such as memory problems or hallucinations, were attributed solely to that condition.” She mentioned that Rob did not undergo further physical tests, as he had already received extensive evaluations during the Parkinson’s investigation.

After receiving the dementia diagnosis, Lynsay pointed out that immediate emotional support was lacking, with a follow-up appointment not scheduled for another nine months. This experience has compelled them to share their story to advocate for a more efficient diagnostic process for dementia. They have since connected with Join Dementia Research through Alzheimer’s Research UK, highlighting the importance of timely and accurate diagnoses for all individuals living with dementia.

Lynsay 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.” In support of this cause, Alzheimer’s Research UK has initiated a petition as part of its Dementia Unseen campaign, advocating for the right to a diagnosis for all individuals facing dementia.