Hundreds of families have reportedly waited months or even years for a dementia diagnosis for a loved one, because apparently, in the world of healthcare, urgency is a relative concept.
A survey by the Alzheimer's Society charity reveals that these long delays have a delightful knock-on effect on families' work, finances, and mental health. Because nothing says 'support' like watching your loved one decline while you simultaneously lose your job and your mind.
The charity is now calling for a national standard that would ensure someone with dementia receives an accurate diagnosis within 18 weeks of being referred by a GP. That would put dementia on a similar footing as other major health conditions, including cancer, which apparently is the gold standard for 'not waiting until it's too late'.
Michael Fethon knows this all too well. His dad, Jim, waited 18 months from their initial GP appointment to diagnosis. It was a delay that took its toll on Jim - and on Michael, who eventually had to give up his job to care for his dad. "I think my dad felt beside himself because he was experiencing symptoms. It wasn't just memory loss," Michael said. His father struggled to drive, shop, and eventually even to walk. "It almost spiralled in that 18 months of his condition, gradually getting worse. If we'd have had a diagnosis sooner, he could have started medication sooner, and whilst the medication doesn't cure dementia, it acts to sort of slow it down and eliminate the severity of it."
The survey, which included more than a thousand families and carers of people living with dementia, found that nearly half of them waited for more than six months for an accurate diagnosis after their first visit to a GP. So, for about 50% of respondents, six months of uncertainty is apparently just part of the fun.
Michelle Dyson CB of the Alzheimer's Society says a diagnosis can really help families access support and plan for the future. "Too many families spend months, and sometimes years, waiting for answers while their dementia progresses. It is like trying to plan a journey without knowing where you are going or when you will arrive," she said, adding, "You would never accept someone being diagnosed with cancer and then left to work out the next steps on their own. Dementia does not wait, and neither should diagnosis."
Keith and Sue Andrews first met when they were 15, and they've been married for 57 years. Sue's condition has deteriorated so much that she now lives in a home. Keith says they had to wait almost a year for a diagnosis, which was difficult. But once they knew for sure, life became more manageable. "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. Because you know you're doing the right thing, but 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."
Like Keith, 9 out of 10 families surveyed said that a formal diagnosis made at least one aspect of life easier, including understanding symptoms and behaviour, supporting the person living with dementia, accessing information, or speaking to healthcare professionals. So, for 90% of people, a diagnosis is actually helpful - who knew?
A spokesperson for the Department of Health and Social Care said: "This Government is determined to strengthen the support that is available both to individuals affected by dementia, and the family members who look after them. We are bringing forward the timetable for Baroness Casey's commission on reform of the social care system, and we are appointing a new dementia tsar to help lead our work in that area, as recommended by Baroness Casey. We are also implementing a new action plan for unpaid carers to ensure that they receive the support and recognition they deserve for the selfless work they do."
So, there's a plan. But for the hundreds of families still waiting, the clock keeps ticking.