A quarter of people with dementia wait two years for diagnosis amid Covid backlog, research says

·4 min read
Care home - Andrew Matthews/PA
Care home - Andrew Matthews/PA

One in four people with dementia have symptoms for more than two years before they get a diagnosis, according to new research.

The study found that mistaking signs of the condition for signs of old age, denial, and long waiting times to see a specialist are among the chief reasons for the delays.

The research by the Alzheimer’s Society follows warnings of a sharp drop in diagnosis since the pandemic, with around 30,000 fewer diagnoses made over two years.

Waits of up to a year for diagnosis

Experts have warned that difficulties accessing GPs and memory clinics since the first lockdown have led to a backlog of cases, with some facing waits of up to a year for diagnosis after seeking help.

The charity’s poll of more than 1,000 people with dementia and their carers found that 26 per cent lived with the condition for more than two years before getting a diagnosis.

Of those, 42 per cent said the main reason for the delay was because they thought their symptoms were just signs of getting old.

Almost one third (31 per cent) said they had been in denial about what was happening.

And close to one quarter (23 per cent) of those who took two years to get a diagnosis said they had been referred for help by a GP, but had faced a long wait to see a specialist.

As many said that fear of dementia meant they had delayed seeking help.

Checklist to help identify symptoms

The charity has produced a new checklist with the Royal College of GPs to help people identify symptoms of dementia and seek help in getting diagnosed.

It includes whether people suffer memory problems, such as struggling to find the right words or repeating questions and phrases; issues with daily living such as struggling to pay bills or getting lost; and behavioural or emotional problems such as becoming aggressive, withdrawn, acting inappropriately or walking about.

The Alzheimer’s Society has launched a new campaign – “It’s not called getting old, it’s called getting ill” – to encourage people worried about their memory or that of their loved ones to seek support.

Kate Lee, chief executive of Alzheimer’s Society, said: “Asking the same question over and over again is not called getting old, it’s called getting ill.

“If you’re worried for yourself or someone you love, take the first step this Dementia Action Week – come to Alzheimer’s Society for support.

“The stark findings of our survey released today show just how dangerous it can be to battle dementia symptoms alone and put off getting help.

“Yes, getting a diagnosis can be daunting – I know I was terrified when my mum got diagnosed.

“But it is worth it – over nine in 10 people with dementia told us they benefited from getting a diagnosis. It gave them crucial access to treatment, care and support, and precious time to plan for the future.”

Only sought help at crisis point

Many of those polled in the new research said they only sought help on reaching crisis point.

Two thirds said they were struggling to look after themselves by the time they came forward, while a third came forward after an accident.

Ms Lee said the drop in the numbers getting help since the first lockdown meant it was crucial that anyone with concerns spoke to their GP.

She said: “With the pandemic causing diagnosis rates to plunge, it’s more important than ever to seek help. You don’t have to face dementia alone, we’re here to support everyone affected.”

Dr Jill Rasmussen, clinical representative for dementia at the Royal College of General Practitioners, said: “It’s vital for patients, their families and GPs that conversations with the potential for a diagnosis of dementia are timely and effective.

“The new checklist developed with Alzheimer’s Society is a simple, free tool to help patients and their families clearly communicate their symptoms and concerns during an often time-pressured appointment.

“This resource could make a real difference in identifying those people who require referral for a more detailed evaluation and diagnosis of their problems.

“We’re asking anyone who is worried about possible dementia symptoms to use the checklist and share it with their primary care team.”

‘Left in limbo’

Earlier this year a Telegraph investigation revealed that people with suspected dementia who did seek help from the NHS had been “left in limbo”, with waits of up to a year for diagnosis.

Charities said elderly people had been left in “excruciating uncertainty” after contacting their GP because of symptoms such as memory loss, only to end up stuck on long waiting lists without treatment or support.

Experts warned that such delays could lead to a deterioration of the condition, making it far more difficult for the vulnerable to cope.

The figures, from 28 NHS organisations, found 2,545 patients facing a wait of at least six months, after a referral for suspected dementia. At some trusts, patients were waiting as long as a year for a diagnosis, the investigation found.

It follows a warning that around 35,000 cases of dementia have been missed since the first lockdown. The figures for January of this year show a steep fall in diagnoses, compared with January 2020.