Dementia remains a terminal illness and it is right to invest more in research

First published 26 March, 2012, on Mail Online

Notwithstanding Meryl Streep’s superb performance, politicians publicly expressed disquiet when ‘The Iron Lady’ came to cinemas in January. Although the historical inaccuracies merited some comments, the subject that caused the most controversy was the portrayal of Lady Thatcher with dementia. Film-makers, they said, should have waited until she had died before depicting her as a frail lady with memory loss.

As I asked back in January, why? One in five of us who make it beyond the age of 80 will suffer with dementia (a mental illness over which we have no control) and frailty and increasing dependency will come to us all. There is no shame in this.

Today the government have announced that they will double the research spending on dementia. This is welcome and well overdue, although it still leaves unanswered the question of how we afford the social care support for those who develop dementia.

 

Three years ago when I was researching for a paper on new technologies and medicines, I came across two startling facts:

The first was that we spend eight times as much on cancer research as we do on dementia research, and much less proportionally in the UK – the equivalent of £7 per person as opposed to £52 per person in the USA.

The other shock was that there was no new approach being developed in research. In other words the focus of research is on how to modify and hopefully slow down the rate of disease progression, not cure it.

That is the hard truth with dementia – it is still a terminal illness with the average life expectancy after diagnosis being eight years. The attitude from many professionals has therefore unfortunately been one of resignation: what’s the point of diagnosing something you can’t prevent; or considering memory loss to be par for the course in older age?

In some groups being diagnosed with dementia is considered a stigma, and professionals can avoid investigations for this reason – but to be fair some individuals deliberately avoid the doctor, not wanting to be told or fearing they have dementia.

Hopefully this new announcement and the accompanying publicity will encourage greater diagnosis of the condition, especially as recent research has shown that the current treatment available is effective in slowing down the rate of progression in those with early stage disease as well as those who have more advanced dementia.

It’s a tragic disease which is no respecter of rank, but as well as investing more in research I hope the UK can also take an international lead in the way it takes care of those who suffer.

About Julia Manning

Julia is a social pioneer, writer and campaigner. She studied visual science at City University and became a member of the College of Optometrists in 1991, later specialising in visual impairment and diabetes. During her career in optometry, she lectured at City University, was a visiting clinician at the Royal Free Hospital and worked with Primary Care Trusts. She ran a domiciliary practice across south London and was a Director of the UK Institute of Optometry. Julia formed 20/20Health in 2006. Becoming an expert in digital health solutions, she led on the NHS–USA Veterans’ Health Digital Health Exchange Programme and was co-founder of the Health Tech and You Awards with Axa PPP and the Design Museum. Her research interests are now in harnessing digital to improve personal health, and she is a PhD candidate in Human Computer Interaction (HCI) at UCL. She is also dedicated to creating a sustainable Whole School Wellbeing Community model for schools that builds relationships, discovers assets and develops life skills. She is a member of the Royal Society of Medicine’s Digital Health Council. Julia has shared 2020health's research widely in the media (BBC News, ITV, Channel 5 News, BBC 1′s The Big Questions & Victoria Derbyshire, BBC Radio 4 Today, PM and Woman's Hour, LBC) and has taken part in debates and contributed to BBC’s Newsnight, Panorama, You and Yours and ITV’s The Week.
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