A coalition of high-profile figures, including broadcaster Jon Snow, has delivered an open letter to Downing Street urging the government to establish a national standard guaranteeing dementia patients an accurate diagnosis within 18 weeks of a GP referral. The call comes as new research reveals nearly half of carers report waiting more than six months for a diagnosis after first seeking medical help.
The letter, signed by 60,000 people and delivered on Wednesday, was backed by actors Sir Jonathan Pryce, Dame Meera Syal, Suranne Jones, and Vicky McClure—all ambassadors for the Alzheimer’s Society. The charity’s survey of 1,000 UK carers found that 45% waited longer than six months for a diagnosis, with 46% of those supporting someone with a formal diagnosis reporting the delay impacted their work. Among carers, 35% said the wait disrupted future planning, and 30% felt their lives were on hold.
Campaigners propose a 18-week target
The Alzheimer’s Society is advocating for a nationally recognized standard mirroring those for other major health conditions, such as cancer and heart disease. The proposed timeline would ensure patients receive a diagnosis, a care plan, and access to treatments where appropriate. The charity argues that without such a target, services could be reduced, leaving more patients waiting months or years as their condition worsens.
Personal accounts highlight delays’ impact
Michael Fethon, whose father Jim waited 18 months for a diagnosis, described the toll the delay took on his family. Jim’s symptoms—including difficulty driving, shopping, and walking—worsened during the wait. Michael ultimately had to quit his job to care for his father. "If we’d had a diagnosis sooner, he could have started medication sooner," Fethon said. "The medication doesn’t cure dementia, but it can slow its progression and reduce severity."
Calls for systemic action
The letter urges the government to:
- Set an ambitious goal to reduce dementia-related deaths;
- Ensure plans are in place for disease-modifying treatments as they become available;
- Support high-quality dementia training for the social care workforce;
- Guarantee early and accurate diagnoses for all.
Michelle Dyson, Chief Executive of the Alzheimer’s Society, emphasized the urgency: "A dementia diagnosis can bring answers, understanding, and access to support—but too many families spend months or years waiting for answers while their condition progresses. Leaving someone to ‘work out the next steps on their own’ would be unacceptable for cancer, but remains the reality for too many affected by dementia."
The Department of Health and Social Care has been approached for comment.