Families Endure Months, Years of Waiting for a Dementia Diagnosis

Over a thousand UK families told the Alzheimer's Society they waited months or years for a dementia diagnosis. The charity wants an 18-week national standard.

Hundreds of families across the UK have gone months, and in some cases years, without a firm dementia diagnosis for a relative, according to survey findings gathered for the Alzheimer's Society. More than a thousand people caring for someone with dementia took part, and close to half reported waiting longer than six months for an accurate answer after their first appointment with a GP.

The charity is pressing for a fixed national target: a confirmed and accurate diagnosis within 18 weeks of a patient being seen and referred by their family doctor. That timeframe would bring dementia into line with the guarantees already attached to other serious illnesses, cancer among them.

The survey also captured the wider cost of these delays. Respondents linked the waiting to strain on their jobs, their household finances and their own mental wellbeing. For many, the uncertainty stretched on while the condition kept advancing.

Michael Fethon knows that pattern well. His father, Jim, went 18 months from the family's first GP visit to a confirmed diagnosis. Jim was eventually found to have Alzheimer's disease at 69, in 2022. During the long wait, Michael gave up his own job to look after him.

"I think my dad felt beside himself because he was experiencing symptoms. It wasn't just memory loss," Michael said. Over that year and a half, Jim lost the ability to drive and to shop, and in time struggled even to walk. His son believes an earlier answer would have changed the trajectory. "If we'd have had a diagnosis sooner, he could have started medication sooner," he said, noting that although the drugs do not cure the disease, they can slow its progress and blunt its severity.

Keith and Sue Andrews faced a similar limbo. The couple met at 15 and have been married since 1969 - 57 years together. Sue's condition has since worsened to the point where she lives in a care home. Keith says confirming her diagnosis took almost a year, and the not-knowing was punishing.

"I won't say it's easy, but you know where you're going, and you know where you're heading and you feel a lot more confident in what you're doing," he said. "Before that diagnosis, you don't know if you're doing the right thing or what to do even. And it's a horrible time, a horrible time."

That sense of relief once answers arrive was widely shared. Nine in ten families in the survey said a formal diagnosis made at least one part of their situation easier to manage. Those benefits ranged from making sense of symptoms and behaviour, to supporting the person with dementia, to reaching information and holding conversations with healthcare staff.

Michelle Dyson CB, of the Alzheimer's Society, said a confirmed diagnosis unlocks support and gives families a chance to prepare. "Too many families spend months, and sometimes years, waiting for answers while their dementia progresses," she said. "It is like trying to plan a journey without knowing where you are going or when you will arrive." She drew a pointed comparison: "You would never accept someone being diagnosed with cancer and then left to work out the next steps on their own." Dementia, she added, does not wait, and neither should its diagnosis.

The Department of Health and Social Care said it was committed to reinforcing the help available to people affected by dementia.

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