A third of Britons who have concerns about whether they, or a loved one, might have dementia wait more than a month to discuss their worries with others, a leading charity has found, despite early diagnosis being important for treatment, support and planning.
According to the World Health Organization, more than 55 million people have dementia worldwide, with 60-70% of cases thought to be down to Alzheimer disease.
Now a nationally representative online survey of 1,137 adults in Great Britain by the Alzheimer’s Society has found 33% of respondents reported taking over a month to discuss their own symptoms, or those of a loved one, with others, with just 15% mentioning them straight away.
When asked if they were concerned that they or their loved one might be spoken down to or treated like a child after a diagnosis, 44% said that was a worry.
Of those who were reluctant to talk to others about symptoms, 64% said they thought their experiences were down to normal ageing, while a third said they had delayed discussion to avoid worrying others and 16% said they were worried about how it would affect their relationships.
The survey, which was conducted between 30 March and 4 April and completed by people for whom either themselves or a loved one have suspected or diagnosed dementia, also suggested nearly a quarter of respondents took more than six months before consulting a medical professional.
“Our research shows that one in three are waiting over a month to raise symptoms of dementia issues because of fear and confusion,” said Paul Reynolds of the Alzheimer’s Society.
“One person develops dementia every three minutes [in the UK]. So that means by 2040, nearly 1.6 million people will be living with the condition,” Reynolds added. “And our health and social care system relies on an early and accurate diagnosis so we can at least treat and support people in the best way.”
Reynolds also suggested early diagnoses could help to reveal the scale of dementia, and hence influence both funding for research and the development of social care for the future.
The charity’s campaign – ‘It’s not called getting old, it’s called getting ill’ – encourages people to seek support in getting a diagnosis by using its online ‘symptoms checklist’.
The findings come after two drugs, both antibody therapies, were recently found to slow cognitive decline in Alzheimer’s patients.
Lecanemab was found to reduce such decline by 27% over 18 months in those in the early stages of the disease, while donanemab slowed progression of the condition by 36% over 18 months.
Despite excitement over the drugs – which are expected to usher in a new era for controlling Alzheimer’s – experts have cautioned it is not yet clear how big a difference the drugs will make to patients, while their cost and side effects could also pose hurdles to their use.
Prof Tara Spires-Jones, deputy director of the Centre for Discovery Brain Sciences at the University of Edinburgh, group leader in the UK Dementia Research Institute and president of the British Neuroscience Association, said that while there are still no cures for the diseases that cause dementia, lecanemab and aducanumab – a controversial new drug whose merits are debated – have been approved in the US.
“These are not yet available in the UK but there are ongoing scientific studies here for better and safer treatments and ways to detect dementia in the early stages,” she said, addingpeople can help with such work through initiatives such as Join Dementia Research.
Spires-Jones added the results from the Alzheimer’s Society suggests people still fear a stigma associated with dementia.
“But the science is clear – dementias are caused by diseases like Alzheimer’s and the earlier the disease is detected, the better the chances that emerging treatments will help,” she said.
