Dementia patients call for major change as charity issues 18-week demand

Ministers must commit to an 18-week standard for dementia diagnosis, a leading charity has said, after polling found 72% of people backed the proposal. Alzheimer’s Society is demanding a nationally recognised maximum wait time to end distressing delays that leave families in the dark.

Ensuring patients receive a diagnosis and access to treatment or support within 18 weeks would help people like Sandra Kemp and her husband Paul. The couple were left “feeling lost and unsure where to turn” for two years while Sandra, 59, experienced worsening symptoms.

Paul, 59, said they initially suspected her brain fog and confusion were a result of menopause. He recalled: “It was silly little things. She struggled with counting change in shops, or she would go to get a bag of sugar and come back with tea bags.

“She had always enjoyed reading but couldn’t get her head around it. First she was diagnosed as maybe just having depression.” Former carer Sandra, of Kent, was eventually sent for cognitive tests and told she had mild cognitive impairment.

In June 2020, she was diagnosed with early-onset Alzheimer’s disease after a lumbar puncture. Paul said: “My heart sank. Because Sandy is quite young, we both understood Alzheimer’s was quite an aggressive thing in younger brains.”

The couple, who have been married for 16 years, found it difficult to access any social care support. Paul gave up work to care for his wife after she left the gas on in their kitchen. They have only recently begun having carers visit three times a day to help with Sandra’s personal care.

Paul said the delayed diagnosis meant they did not “know what to plan for” and an 18-week standard is “quite essential”. He added: “If Sandy had been diagnosed quicker, she could have been on medication that might have slowed it down.

“It can be very fast-moving. For two to three years she was on no medication at all, just letting it run wild. She’s regressed quite a lot now.”

Paul added: “The Government needs to stop talking about it and get on with it. No one should be left waiting for answers or battling for help when they’re already dealing with the reality of dementia.”

Last week, the NHS hit a target for more than two-thirds of people with dementia in England to have a diagnosis for the first time since the Covid pandemic. Figures showed 66.7% of people living with dementia were estimated to have been diagnosed as of September — totalling 523,081 people.

However, charities are demanding more ambitious targets. Alzheimer’s Society’s polling of just over 2,000 adults found 56% thought dementia should be one of the Government’s highest priorities over the next five years. This was second only to cancer (75%) and above heart disease (49%), mental health conditions (46%) and diabetes (17%).

Some 42% said ensuring that people receive an early and accurate diagnosis within 18 weeks should be the top dementia priority, followed by 39% who wanted to prioritise better access to dementia treatments. Some 37% also wanted to see improved coordination between NHS and social care services for people affected by dementia.

Alzheimer’s Society chief executive Michelle Dyson said a London pilot had shown that it was possible to give patients a dementia diagnosis, care plan and treatment within 18 weeks, while improving diagnostic accuracy.

She said this timeframe would “put dementia on a par with other major health conditions and give people a clear expectation of when they should receive help”.

Ms Dyson added: “People affected by dementia have told us for years that getting a timely diagnosis can be one of the biggest challenges they face.

“An early and accurate diagnosis opens the door to vital support, helps people understand what lies ahead and is becoming increasingly important as new treatments emerge.

“The strength of public support for action on dementia sends a clear message: this issue matters to voters. The UK Government must act now by committing to a maximum 18-week wait for a dementia diagnosis and providing the investment needed to make that target a reality.

“Without greater investment in diagnosis and the staff needed to deliver it, too many people will continue to face long waits for answers, support and treatment. With nearly one million people living with dementia across the UK, this is an opportunity the UK Government cannot afford to miss.”

A Department of Health and Social Care spokesperson said: “Dementia is a cruel disease that takes a huge toll on patients and their loved ones. A timely diagnosis is crucial to getting people the support they need, which is why this Government is working to improve diagnosis, care, and treatment.

“The NHS recently met its target of more than two-thirds of people aged 65 and over thought to be living with dementia receiving a diagnosis. This progress has been driven by work across the NHS, including better tools and data to help local teams improve diagnosis rates.

“We know there is more to do, and we’ll keep working with the NHS to build on this progress. We are investing record amounts in research, introducing a new framework to improve care and support, and our new national dementia tsar will help drive further improvements.”

Dr Jeremy Isaacs, NHS England’s national clinical director for dementia, said: “It is fantastic news that the NHS has hit its target for diagnosing more than two thirds of people with dementia for the first time since before the Covid-19 pandemic – and 50,000 more people than the last time this target was hit.

“As the number of people with dementia continues to rise, it’s vital that we look at how we can provide a fitting and sustainable way to deliver long-term care for people with this devastating disease who are sometimes overlooked, which is why we are working with government to develop a national vision for dementia care.”