A third of people with symptoms of Dementia are reportedly keeping concerns to themselves. We examine the landscape of the disease ahead of Curia’s inquiry session on future dementia technologies.
A leading charity has found that a third of Britons who have concerns about whether they, or a loved one, might have dementia wait over a month to discuss their worries with others, even though early diagnosis plays a crucial role in receiving treatment, support, and planning.
The World Health Organisation estimates that there are over 55 million individuals living with dementia worldwide, and it is believed that 60-70 percent of these cases can be attributed to Alzheimer’s disease.
33 % of respondents took more than a month to discuss symptoms
A nationally representative online survey conducted by the Alzheimer’s Society, involving 1,137 adults in Great Britain, revealed that 33 percent of respondents took more than a month to discuss either their own symptoms or those of a loved one with others, with 15 percent of participants mentioning these symptoms right away.
When asked if they were worried that they or their loved one might be spoken down to or treated like a child following a diagnosis, 44 percent of the respondents expressed concerns.
Among those who hesitated to discuss their symptoms with others, 64% said they thought their experiences were a result of natural ageing, while a third said they had postponed discussions to prevent worrying others and 16 percent said they were concerned about the potential impact on their relationships.
The survey, carried out from March 30 to April 4, was completed by individuals who either had suspected or diagnosed dementia themselves or had a loved one with the condition. Additionally, the survey revealed that almost a quarter of the respondents waited over six months before seeking advice from a medical professional.
Early diagnosis of dementia could play a significant role
“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 play a significant role in uncovering the scale of dementia.
‘It’s not called getting old, it’s called getting ill’
The charity’s campaign – ‘It’s not called getting old, it’s called getting ill’ – encourages people across the country to seek support in getting a diagnosis and raises awareness of dementia symptoms with its online ‘symptoms checklist’.
New drugs could slow cognitive decline among individuals with Alzheimer’s disease
These findings follow the recent discovery of two drugs, both antibody therapies, that have shown promise in slowing cognitive decline among individuals with Alzheimer’s disease.
While lecanemab was found to reduce cognitive decline by 27% over an 18-month period in those in the early stages of the disease, donanemab slowed down the progression of the condition by 36% over the same duration.
Experts warn it is not yet clear how big a difference the drugs will make to patients
Despite excitement over the drugs – which are expected to herald a new era in the management of Alzheimer’s – experts have warned it is not yet clear how big a difference the drugs will make to patients. Furthermore, the cost and potential side effects of these drugs may also present obstacles to their use.
Lecanemab and aducanumab have been approved in the US
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 currently no cures for the diseases that cause dementia, both lecanemab and aducanumab 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, adding individuals can help through initiatives such as Join Dementia Research.
Spires-Jones further commented that the results from the Alzheimer’s Society could suggest 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.
With over 55 million individuals living with dementia worldwide, it’s more important than ever to raise awareness and stop the stigma surrounding the disease. People need to feel comfortable to consult with a medical professional about their symptoms and concerns. This will not only put their mind at ease but impact the future development of social care.
Lecanemab and donanemab are shown to work better in people who are diagnosed earlier. The US has already given the drugs the green light, and with more awareness and studies, we may be able to offer safe treatments.
NHS Innovation & Life Sciences Commission
Curia’s Dementia Commission is uniquely bringing national, regional and local leaders together to implement a plan to set out a plan to improve the life chances of all people living with dementia. Our commissioners will help the Curia research team produce solutions to improve implementation. Case studies on dementia and good examples of best practice will feature at a series of inquiry sessions and in the final report.
Three roundtable inquiries will create a vision for what the environment needs to look like to support people with neurodegenerative conditions, namely dementia and be ready for future treatment pathways. The roundtables will produce recommendations for how outcomes can be improved. Stakeholders will include clinical leads, commissioners and regulators including NICE, NHS England and patient organisations. Each roundtable will have a remit to look at how pre-existing policy can be implemented, identifying where gaps exist in the policy landscape and setting a series of recommendations to explore the improvement in the system for patients with a neurodegenerative condition.
Curia will publish the findings at a Parliamentary launch alongside the reports from roundtables to ensure maximum engagement.
To sign up to our first inquiry session on Monday 22nd May 13:00-15:00, see below: