Remembering Dementia.

 Can we forget it?  Not if we have witnessed the effects of this devastating disease. Apprehension over the possibilities of dementia does in fact feature strongly in the fears of all those ageing into their sixties or beyond. And understandably so when the statistics show that one in three of us will go on to develop the disease. Dementia is, in fact, now the leading cause of death in the UK, accounting for more than 76,000 deaths in 2024 with the economic consequences ever-mounting as the cost to the U.K. economy soars to £42 billion in 2024.

Despite these facts, dementia has long been comparatively neglected as a major health condition, with late diagnosis, substandard treatment and insufficient support for afflicted families featuring as normal. Research from University College, London, shows that it takes roughly three and a half years from first symptom to full maturity of the condition for diagnosis, with up to one third of sufferers remaining undiagnosed.  My sister who died with the disease nine years ago is an example; she remained clinically undiagnosed, partly because her family held the popular belief that it was all part of the normal ageing process.

Last year, the UK Govt. announced a Modern Service Framework for Dementia and Frailty, to improve the quality of dementia care and treatment in England.  Michelle Dyson, CEO of Alzheimer’s Society suggests that this new framework provides a great opportunity to showcase two main ambitions; notably to reduce deaths and importantly, enable sufferers to live longer and better lives outside of care homes. Achieving this will require a two-pronged approach to prevention: earlier diagnosis and intervention, with that formal involvement backed by all departments across Govt. committing the same levels of urgency and ambition as that generated by early cancer campaigns. One of the biggest positives is the renewed backing for the Dame Barbara Windsor Dementia Goals Programme, an initiative originally campaigned for by supporters of  Alzheimer's Research U.K. This Programme is committed to speeding up research into new tests and treatments and is a key vehicle for delivering the Governmental promise to transform how dementia is treated in the NHS.

Perennial Problems

Late diagnosis and misdiagnosis can lead to problems for patients.  For example, many clinical trials where patients can try life-changing new treatments are only available to those in the early stages of dementia. Paresh Malhotra, Professor of Clinical Neurology at Imperial College, London, believes that earlier, specific diagnosis for everyone is needed. “Everyone in the country deserves an MRI scan and specific blood tests when they present with symptoms rather than having to wait years.” Linsey Farnsworth, Labour M.P. for Amber Valley, observed the longer-term effects of misdiagnosis for her father who was initially diagnosed with depression and anxiety, but then, eventually, with Alzheimer’s.  Several years after the initial diagnosis, he received a CT brain scan confirming he had frontotemporal dementia suggesting that his earlier treatment had been ineffective and the drugs administered had been mainly a waste of resources.

The NHS is expensive; the annual per-person cost of mild dementia is £28,700 compared with £80,500 for severe dementia and these escalating charges can lead to cost problems for any innovation. Two new disease-modifying therapies, donanemab and lecanemab, which slow down the progression of Alzheimer’s rather than just managing symptoms, were approved by the UK medicine’s regulator in April 2015 and are being used in private healthcare settings but not in the regular NHS. NICE decided that the small benefits of their use did not justify the cost. Yet, Professor Malhotra believes that their full benefits will not be realized until they are more widely used in clinics, and that, as new treatments are developed, then incorporated, into combinations of therapies,                                                                                                success will more likely be achieved.

Dementia patients are often discharged from specialist care such as neurological or psychiatric and sent back to their G.P. after diagnosis, which may well result in less specialized care and can lead to a lack of support for families. The new framework is seeking to trace a coherent treatment path for dementia patients where continuous care from specialists is available and patient information is shared between GPs, specialists, care home and clinical research programmes. Recent data shows that only 55% of care staff have received any dementia-specific training and Farnsworth has backed the Alzheimer Society’s call for dementia-specific training for the social care workforce. Meanwhile, Dame Louise Casey is currently undertaking an independent commission on reforming adult social care and has called for the creation of a dementia czar, rather like the creation of a cancer czar more than 20 years ago which brought significant success. 

Professor Malhotra believes that the medical emphasis needs to move from thinking about treating dementia to addressing the diseases and ways of living that cause dementia in the first place. It is estimated that nearly half of all dementia cases worldwide are preventable, with major contributors to its development being mid-life hearing loss, loneliness, physical inactivity and high blood pressure. And better public health messaging, like the effective ‘Stop smoking’ campaigns for cancer, could also raise awareness of the 14 lifestyle factors which increase dementia risk. C.E.O. of the Alzheimer’s Society, Michele Dyson, feels it is very important to provide much more help for carers and families and she urges that this new Modern Service Framework gives a once-in-a-lifetime chance to seize the opportunities presented by recent research to devise systems to respond to the immense challenges of what is being described as the UK's dementia crisis. For too long, dementia has been treated as an inevitability to be managed, rather than a condition where earlier intervention can make a meaningful difference to lives.