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.

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About Julia Manning

Julia Manning is a social entrepreneur, writer, campaigner and commentator. She is based in London and is the founder and Chief Executive of 2020health, an independent, social enterprise Think Tank whose aim is to Make Health Personal. Through networking, technology, research, relationships and campaigning 2020health has influenced opinion and action in fields as diverse as bioethics, alcohol, emerging technologies, fraud, education, consumer technology and vaccination. Julia studied visual science at City University and became a member of the College of Optometrists in 1991. Her career has included being a visiting lecturer at City University, a visiting clinician at the Royal Free Hospital, working with south London Primary Care Trusts and as a Director of the UK Institute of Optometry. She specialised in diabetes (University of Warwick Certificate in Diabetic Care) and founded Julia Manning Eyecare in 2004, a home and prison visiting practice for people with mental and physical disabilities using the latest digital technology, which she sold to Healthcall (now part of Specsavers) in 2009. Experiences of working in the NHS, contributing to policy development, raising two children in the inner-city and standing in the General Election in Bristol in 2005 led to Julia forming 2020health at the end of 2006. Julia is a regular guest on TV and radio shows such as BBC News, ITV’s Daybreak/ GMB, Channel 5 News, BBC 1′s The Big Questions, BBC Radio, LBC and has taken part in debates and contributed to BBC’s Newsnight, Panorama, You and Yours and ITV’s The Week. She is mum to a rugby-mad son, a daughter passionate about Shakespeare, and wife of a comprehensive school assistant head-teacher. She loves gardening, ballet, Zimbabwe, her Westies Skye and Angus, is an honorary research associate at UCL and a Fellow of the RSA.
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