word dementiaI’m old enough to remember where I was when John Lennon died – helped by the fact that his shocking, untimely death occurred on my birthday.  I was in my second year at Southampton university, vaguely getting to grips with how to cook for myself and occasionally dipping into the likes of Wordsworth and Yeats when I wasn’t down the uni bar.  It was another era.

It was 1980 – 35 years ago, the beginning of Margaret Thatcher’s lengthy rein, the Greenham Common CND rallies and the Austin Metro.  Back in those dim and distant days cancer was, to us as a nation, what dementia is now – or, as it’s usually put to me, “Dementia’s where cancer was 30 to 40 years ago”.  I’ve been told this so many times that I’ve decided to see if the statement’s true. Predictably, given that these are the untested investigations of an erstwhile student of the English Romantics, the answer’s rather wobbly.

There are similarities, particularly when it comes to the stigma surrounding dementia and lingering, though less so, over cancer.  Feeding into, and off, this stigma, are fear and silence.  Cancer is talked about more freely than it was 30 years ago, when I can remember grown-ups referring, in hushed tones, to the Big C (a phrase I never hear now).  Today, over 55s are more scared of dementia than cancer.

One reason for this fear is of course that there remains no cure for dementia, while some cancers are curable.   Despite this, society’s understanding of dementia is slowly being improved by the soft power of culture.

Just as, in 1965, with a few brave and well-chosen words, Richard Dimbleby (the “voice of the nation”) helped banish the stigma of the Big C by announcing on television that he had testicular cancer so, today, films such as Still Alice about a woman with Alzheimer’s, celebrities such as Prunella Scales and Terry Pratchett speaking out about their condition, and an increasing number of online, print, radio and television articles combine to achieve the same for dementia.

A friend of mine who lost her 77-year-old husband to dementia a few years ago offers another explanation for its persistent stigma.  “Because it affects the brain, dementia can make someone’s behaviour unpredictable or strange, and – in public places such as theatres or shops – this can be difficult to deal with, in a way that’s different from the challenges of cancer”.

Dr Katherine Sleeman, clinical lecturer in palliative medicine at the Cicely Saunders Institute, King’s College, London, describes the oft-repeated mantra comparing the two afflictions as a useful sound-bite.  “But for me as a scientist,” she adds, “I’d want to be sure, and it’s more complicated than the phrase makes it sound”.

It certainly is.  Let’s consider some facts.  In the 1970s a quarter of those with cancer survived; today more than half live for at least 10 years, while a quick scroll through the history of Cancer Research UK since 1980 reveals a compendium of breakthroughs, advances, new (sometimes life-saving) drugs, gene and hormone therapies, screening techniques and vaccines.

word cancerThe groundwork for the progress of cancer treatment in the past 30 years was laid down earlier in the 20th century.  Radium bromide was first used to treat mice in 1904; today 4 out of 10 cancer patients are treated with radiation, which cures more people than chemotherapy.  The first family trees showing hereditary bowel cancer were published in 1925, paving the way for the identification of genes linked with the disease in the 1980s.  The first warnings of the link between sun exposure and skin cancer, which came in 1935, still form the basis of today’s SunSmart campaign.

In marked contrast, the century or so since Dr Alois Alzheimer discovered the disease that bears his name (and is the most common of scores of different dementias) has seen few solid breakthroughs.  Only a handful of drugs (such as Aricept) sometimes, if taken at key stages, moderate the effects of certain dementias.

In recent days, a newly published report has revealed that between 1998 and 2010, 101 unsuccessful attempts were made to develop drugs for Alzheimer’s, with only three gaining approval for symptom treatment.   The report from the World Innovation Summit for Health (Wish) talks of “funding fatigue”, claiming that between 2009-2014, after “repeated and costly failures” to make a breakthrough, drug companies halved the number of research programmes into central nervous system disorders (including dementia).

Alzheimer’s Research UK has announced a £30m drug discovery alliance and launched three flagship institutes at the universities of Cambridge, Oxford and UCL (University College, London).   It’s interesting to note that in the 1960s – half a century ago – three flagship cancer institutes were created in London, Manchester and Glasgow.

It’s beginning to seem as if our knowledge of dementia might be more than 30 to 40 years behind that of cancer.  Alzheimer’s Society figures showing that in 2012-13, spending on cancer research (£502.8m) was seven times that spent on dementia (£73.8m) don’t do much to change that view, notwithstanding the Prime Minister’s recent pre-election announcement of £300m extra Government funding.

Put bluntly, to my unscientific eyes, it looks as though cancer statistics are moving in the right direction, dementia stats aren’t.

My layperson’s view is bolstered by the fact that mortality due to cancer started to fall in the early 1990s and is predicted to drop by around 17 per cent between 2011 and 2030 (thanks to earlier diagnosis and improved treatments), whereas the number of those with dementia is steadily increasing – 850,000 this year, predicted to rise to 1.14m in 2025 and 2m in 2050.  This amounts to a 156pc increase in 38 years, largely because we’re all living longer.

Phil McCarvill, head of policy and public affairs at Marie Curie, believes these two sets of diverging figures could have an impact on the hospice service in this country.  “We know that the majority of people who currently use hospices have cancer, yet as cancer survival rates increase the number of people with dementia is growing year on year; this means that hospices will have to accelerate the work they’ve been doing over recent years to ensure that they’re able to meet the needs of people with conditions other than cancer, specifically the increasing number of people with dementia”.

Dr Sleeman says that the comparative figures belie a situation made more complex by care settings.  “As their condition progresses, people with dementia tend to move into care homes, where staff can cope with their needs”.  In addition, she adds, doctors are usually able to predict when cancer patients are entering their final weeks, whereas this is harder in people with dementia.

However Dr Teresa Tate, whose distinguished career in palliative care has lasted over 20 years, is clear that hospices are designed to support those at the end of their lives regardless of their diagnosis.  “People, including those with dementia, should have access to hospices at times of specific need and then withdraw from their services, sound in the knowledge that they can return should they need to”.

Her view is shared by the National Council for Palliative Care, which has recommended a review of admissions policies, internal monitoring and staff education programmes to ensure that those with dementia have full access to hospice care.

Normally, whether I write about dementia therapies, hen power or grief (not a naturally cheery subject), I tend to type my last sentence feeling, if not uplifted, then satisfied that I’ve joined a few dots or at the very least laid to rest some ghosts so that I or others may be able to move on.

This post, on the other hand, has left me unusually flat.  It’s not just its lists of figures and facts, with which I’m never keen to boggle readers, but the laggardly progress they reveal in various aspects of dementia research, treatment and care.

If dementia is anywhere near where cancer was 30 to 40 years ago, it’s in the realm of stigma reduction.   The more we talk about dementia, the more we demystify it, the less fearful and more confident everyone becomes.  This is in our gift.

As for the rest – the game-changing breakthroughs, the life-saving drugs, the vaccines and screening programmes – we’re simply not there.  I’ve no idea (in those terms) how many decades behind cancer, dementia is; but the answer’s many more than 40 or 50 or 60.  Perhaps the phrase is misleading and I’ve been comparing apples with pears – it’s certainly, as Dr Sleeman said, a complicated issue.  The fact remains, whichever way I look at it, so far the story’s not great.