“Dementia’s where cancer was 40 years ago”. Is it?

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.

13 Responses to “Dementia’s where cancer was 40 years ago”. Is it?

  1. Jan Inman 25th February 2015 at 3:01 pm #

    Thank you Pippa for another great article and just like you it leaves me feeling flat .

    I have heard the Dementia is like the old cancer and I believe it’s not cancer we should compare it with. The stigma and often compleat ignorance and fear remind me of the first Aids advert and how the general public behaved for many years .
    Then as time went on and Celebrity’s picked up the cause and dare I say it almost made it fashionable and the rest is history

    Well as we know some people with so called celebrity status have been brave enough to come forward and help support Dementia , but it’s just not happening I have spent a whole year fighting for signatures on my petition and to date only have just over 5000 , which just shows how people react to Dementia take a look at how many signatures can be gained in 24 hours for almost every other cause .

    The mountain we have to climb seems insurmountable but we the people who now the truth and have shared experience of this dreadful disease fight on .
    If this is not tackled soon I believe it will be the biggest National health disaster this World has ever seen.
    Who will stand up who will ask the questions and who will admit that this is not a disease of the elderly if the general public knew how young people are being struck down with this then just maybe something might happen . Till then it’s people like you who keep the debate going .
    Thank you love Jan.x

    • Pippa Kelly 25th February 2015 at 3:50 pm #

      Many thanks Jean. Your writing is always so raw and from the heart that it never fails to move me. As you know I’m normally hopeful and I do think that things are now finally, slowly, changing in the world of dementia, but it’s all far too late for you and Ron, and that is so immeasurably sad.

      Do email me and let me know how you are.

      All the best,
      Pippa

  2. Tracey chapman 25th February 2015 at 3:04 pm #

    Hi Pippa
    The statistics are frightening which ever way you look at it but it is our job to continue to de – stigmatize dementia and promote the fact that you can live positively after diagnosis, things are improving all be it very slowly. I have been in post as a dementia nurse specialist for nearly three years and peoples attitudes are changing, Consultants are becoming more aware of the needs of a PWD whilst in hospital which is a huge step forward compared to just three years ago. However funding needs to be a priority and not just from our Government. We need a worldwide approach to try and find a cure for this disease because as we know it’s not just the UK that figures are set to rise.
    Perhaps if we had a mega celebrity to invest in the cause as Liz Taylor and Elton John did with the AIDS campaign we might be on our way ……..

    Kindest regards
    Tracey

    • Pippa Kelly 25th February 2015 at 3:52 pm #

      Many thanks Tracey. I think you may well be right about a mega-celebrity helping the cause in terms of funding and research. What an indictment of our society! I agree that things are finally beginning to change, but it’s all very slow, and very late. Huge thanks for taking the time to comment.
      All the best,
      Pippa

  3. Christine Morgan 25th February 2015 at 5:55 pm #

    I agree that the story so far is not great but think there are some seeds of hope.

    Picking up your cancer comparison I remember back in 1971 when my mum first had cervical cancer which she actually survived but the clincial and personal experience for her and us, her family, was grim. There was no internet so we were pretty much in the dark as to possible treatments and whether she would survive. There was no support beyond the clincial treatment. Any information we did manage to get was largely from health professionals who whilst well meaning were pretty cursory.

    Other anecdotal information came from family & friends if ‘it’ was talked about at all.

    Then in the 1990s mum was diagnosed with bowel cancer, which killed her in 4 years and whilst some information was more readily available the patient, even backed by family members, still had little control or say in how she was treated in that art of the country. Those 4 years were the worst of my mum’s life and I remain haunted by her suffering and anguish.

    But now we have the Internet and social media and not only is knowledge and information readily available it is global.

    Individuals are coming together and proving to be an irresistible force which is why I think there is hope for dementia, albeit measured and tempered by knowing there is a long way to go.

    • Pippa Kelly 26th February 2015 at 4:19 pm #

      Thank you Christine. What a thoughtful comment – and yes you are right. The Internet has helped so much in bringing together people who share the same fears, challenges and experiences.
      I’m very sorry to hear about your mum. Although the Internet existed when my mum had dementia, I now realise that I knew so little and could have done so much more.
      I’ll take hope from your words.
      All the best,
      Pippa

  4. Chris Moon-Willems 27th February 2015 at 6:51 am #

    Another great, albeit depressing read Pippa. One of the striking differences between cancer and dementia is in specialist support. When my father was diagnosed with cancer a Macmillan nurse was present at the hospital, ready to give help and advice. She also gave us her card to contact her whenever we were worried and needed her help. When my mother was diagnosed with dementia there was no such support available. Sadly the number of Admiral nurses is significantly less than Macmillan and Marie Curie nurses. In addition to finding a cure for Alzheimer’s and other causes of dementia we need to help people and their families live well with dementia by offering the same human support people with cancer are offered.

    • Pippa Kelly 27th February 2015 at 8:35 am #

      Hi Chris

      You are so right. I am still trying to get to the bottom of the lack of Admiral Nurses, which are always described to me as “lifesavers” or “guardian angels”. Obviously cost is a factor, and a rigorous evaluation of what they offer for what they cost – something which I know Dementia UK is now tackling. I want to write a piece on Admiral Nurses as soon as I have all the facts. It is so sad – and very wrong – that people with dementia and their carers are not offered enough support, particularly as there is no cure.

      Thank you for your support for my writing. This last piece was unusually depressing – I think because what I discovered was worse than I’d thought.

      All the very best,
      Pippa

  5. Donna Thomson 1st March 2015 at 3:37 pm #

    Thank you for a thoughtful post which I’ve shared widely. Part of the issue, I believe, is the element of cognitive impairment in dementia and Alzheimer’s (you mention this). Almost every philosophical definition of being human involves the capacity for reason. This poses a problem of perceived, diminished moral personhood for those with Alzheimer’s, developmental disability and severe mental illness. The double whammy for Alzheimer’s is that it inherently speaks of old age, impending death and people do not want to be reminded of their own mortality. The dependency issues of all these conditions are not attractive to the general population and are anathema to the current cult of youth and independence.

  6. Pippa Kelly 2nd March 2015 at 8:38 am #

    Many thanks for your comments Donna and how right you are. I am sure that the double whammy, as you put it, of cognitive impairment (and the sense of loss – of another and of self – and the unpredictable behaviour this can bring) and the fact that 95pc of people with dementia are over the age of 65 makes it even more difficult to attract funding for research and care, and to diminish stigma.
    I have taken a look at your blogs and will certainly follow you now. I often describe the person with dementia and his or her carer as two sides of the same coin; they are interlinked and inseparable when we come to view the condition and all the various issues surrounding it.
    Do let’s keep in touch.

    • Donna Thomson 2nd March 2015 at 11:24 am #

      Yes, let’s do keep in touch! My interest is in giving and receiving care across ages and abilities. My Mum is 93 and is forgetful, but thankfully does not have dementia. I am an activist interested in broad societal change that will make it easier for people to care for one another and this includes funding research, accepting our own mortality and creating the economic and social frameworks that will enable caregivers and care receivers to survive economically and thrive in their neighbourhoods.

  7. Damian Murphy 22nd September 2015 at 12:15 am #

    Hi Pippa – wow so many thoughts cross my mind. in no particular order – recently had a conversation with a friend asking the same point – is it like cancer was 30 years ago? The difference we both recognised was that people with cancer did not really get militant. This is starting very slowly through the DEEP movement and blogs such as Wendy Mitchells ‘whichmeamitoday’ and Kate Swaffer’s brilliant and challenging daily testimonials. So we looked t it from another side. – I believe this does give us hope. I blogged today about how the stress and burden model has prevailed and may contribute to the pall of negativity that hangs around dementia. I agree with the point re scarcity of Admiral Nurses – so we need more initiatives that those with most contact (usually the least qualified but most empathic dom care staff, community-based workers etc) can support. The Getting Along programme is a project I carried out this year too looking at equipping couples in their own home with strategies to outmanoeuvre the presence of dementia driving a wedge between them. Anyway. a great piece, Pippa. We do need to find a light. Currently I see that coming from responding to and listening to the words, actions and shared experiences of people living with dementia themselves. Here’s hoping!

    • Pippa Kelly 3rd November 2015 at 12:28 pm #

      Many thanks Damian for taking the time to comment so comprehensively. I will contact you to find out more about the Getting Along programme, which sounds very interesting.

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