dementia

I am in Helsinki, Finland, for a few days this week, sitting on a review panel for the ‘Joint Programme – Neurodegenerative Disease Research.’  It is the first time that this programme has involved patients in its review process for funding research so it feels a bit of a milestone moment.  This, after twelve months, of patients and the public coming together (lead ably by Mogens Horder in Denmark) to help develop an approach to public involvement that is practical, constructive and manageable for all concerned.  Another small step for public involvement you might say.

Helsinki Sparring PartnersThe meeting is taking place in the Helsinki Congress Paasitorni which, roughly translated, is the City’s Workers’ Hall. It is a rather magnificent building and last night I posted some of the art that adorns its walls, to my Instagram account.  Outside, in the square, is a sculpture of two sparring fighters as see here.  They certainly don’t seem that hostile towards one another do they?

Somehow it feels like a fitting metaphor for how patients and researchers should be working together in a review panel: sparring together to get better, challenging each other’s thinking, endeavouring to develop each other’s technique .  This is no bout between hostile combatants.  Or it shouldn’t be.

Yet, as well all know, what happens in the ring is dependent on many factors. From the quality of the referee (Chair) to how the ring is set up.  I am happy to report that this has been a good experience thus far.

Before I go….A good friend got in touch with me last week. ‘Have your ears been burning?’ they asked.  Before going on to tell me how my name had cropped up in conversation with a mutual acquaintance.

The saying – ”Have your ears been burning?’ – goes back to Roman times I understand.  It was believed that if your left ear burns, someone is speaking ill of you and; if your right ear burns someone is praising you.

But I am thinking we ought to update this bit of ancient lore to suit modern times.  Something along the lines of: if your right ear burns then someone is accessing your personal data for societal benefit; if your left ear burns someone is using it unwisely.  And if your nose itches then someone else is looking at your genome sequence.

Why? Because of late I have found myself reviewing a lot research proposals in which, almost without exception, researchers are proposing the collection of this or that sample, to generate data that might be linked or not linked with other data, to give new insights or not into this or that disease.  None of this is wrong or unethical of course.  Appropriate consent has been sought from the patient in every case.  Much of the proposed research could be highly significant in the search for disease causes and viable treatments.

In fact it is perhaps one of the less talked about practical benefits of research using personal data that: if people were being poked, prodded and questioned in person as much as their data can be, we might be facing research fatigue across the general population.  But it would still be good to know when, how and why in my opinion. Rather than relying on a feeling.

Still, you can take sayings too far. After all, the Romans also believed anybody could be a doctor.  And I don’t want to start a fight.

Alzheimer’s disease is getting a reputation for its merciless pursuit of the political elite of the 70s and 80s.  Think Harold Wilson, Ronald Reagan and now Mrs Thatcher.  One hopes that some good may come of it; a doubling of the efforts to find a cure would be a most suitable legacy.

Of their passing from this terrible disease what can one say?

My recollection of the day that former Prime Minister, Harold Wilson, died (24th May 1995) is that his battle with dementia in later life was barely acknowledged.  A look at one or two obituaries from the time would seem to bear that out.  Dementia did not even merit a footnote.   On the other hand these tributes did rehearse the speculation at the time of his resignation in 1976 about his growing ill-health and its impact on his formidable memory.  One very good reason why dementia was not referenced at the time is that his family never publicly acknowledged it. Or not as far as I am aware.  Only in the past few years has his wife, Mary Wilson, talked about it and movingly so.

A sign of the times. Or not.

Only the year before – on 5th November in fact – former President Ronald Reagan had publicly disclosed that he was suffering from Alzheimer’s disease.  Ever the showman, I think he would have liked the fact that his announcement coincided with fireworks night.  In fact he probably would have done it deliberately if he’d known.  The personal message he and Nancy sent to fellow Americans at the time is worth reading.  It is hard to convey the seismic impact their statement had at the time for the many families who had cared for or were caring for someone with dementia.

Loneliness is one of the first battles we must all confront with any illness not just dementia.  Having someone else out there who ‘we know’ and who is suffering from the same thing as us can bring considerable comfort.

So it was dispiriting how judgemental and disapproving commentators were when Carol Thatcher talked about her mother’s illness in 2008.  Similarly the reactions to the sympathetic if premature portrayal of Mrs Thatcher in the ‘The Iron Lady’ starring Meryl Streep.  It is also a little hard to put one’s finger on quite why this should be.  British reticence?  A modern inabillity to deal with the passing of life?  A dislike of talking about illness?  Pomposity?

The upshot is that while Mrs Thatcher’s dementia has undeniably been acknowledged by in the British media’s in their coverage of her death, it has only been in passing. Or so it feels to this writer.  Curiously it is the foreign press who have focused more on her condition than their colleagues here at home.  And they have done so to ask interesting questions about stigma, the under-reporting of the dementia and how ill-health is an important part of each of our stories?  Surely there is nothing disrespectful about reporting it as fact but also about using it as a means to open up a discussion about something which affects millions of people across the world.

Still there is time for this to happen I suppose.  So far the coverage feels all too familiar in its effortless and unthinking combination of the pre-prepared and the reactive – all at 100 miles an hour.  I have no doubt that the best and most reflective pieces of journalism will come in the weeks ahead and that this is perhaps where Mrs Thatcher’s cognitive decline will receive appropriate treatment and for constructive reasons.  The Prime Minister – who did not mention Alzheimer’s disease in his tribute yesterday – also has an excellent opportunity to invoke Mrs Thatcher’s memory for the common good within the context of his own Dementia Challenge.

Maybe, just maybe, there is another chapter to be written on Mrs Thatcher’s legacy yet.

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If this blog reads like a criticism of any of the families mentioned above then I am sorry, it is not meant to.  It is a personal reflection prompted by my own experiences personal and professional with dementia over many years.  All families make choices and who am I to judge.

Here is the Alzheimer’s Society statement on Mrs Thatcher’s death.

 

We were decluttering the flat this morning and I came across this picture. It had been on my boys’ bedroom wall until it was replaced by a Crystal Palace FC 2013 calendar a few weeks ago!

A Summer Sail

In the late nineties I was living in the United States. Off and on, I volunteered for the Cincinnati Chapter of the Alzheimer’s Association.  They have a ‘Memories in the Making’ project  in which people in the early to middle stages of dementia are given the opportunity to express themselves in visual arts.  Given that most of the participants have little or no previous experience of drawing and painting, and that other means of communications have become increasingly difficult for them, the results are incredibly powerful.

This particular picture was painted by a man who signed his name as TM and is entitled ‘A Summer Sail.’  The inscription on the back says:

TM is a gentleman of many interests, one of which is camping and enjoying the outdoors.  During a (Memories in the Making) session, the artists reminisced about summer days, and with cueing, TM created this wonderful painting, ‘A Summer Sail.’  One can almost feel the sun and the summer breeze as the sailboat skims across the water.

I came to own the picture in a silent auction at one of the Cincinnati Chapter’s annual galas and I love it for many reasons. The fact it only uses one colour. The swooshing brush strokes with their energy and vigour.  Its optimism – you can almost feel the sun on your back watching this sailboat on the sea.  The fact that something so personal can have universal appeal.

Above all, I treasure it as a reminder that even though the growing clouds of the disease may clutter a person’s mind, there are moments of lucidity and clarity that allow them and us to connect so utterly as fellow human beings.

Space will be found for ‘A Summer Sail’ on our wall once again I assure you.

 

Expect lots of news pieces this week about Alzheimer’s disease ahead of World Alzheimer’s Day (WAD) which takes place on Friday 21st September.  This is one of the better ones I have seen, from the Observer yesterday.  Interesting how the language has changed although the message has not – what was once called a timebomb is now a tsunami.

In the UK, this year’s event has more urgency than hitherto thanks to the Prime Minister’s Dementia Challenge.  And the day actually marks the beginning of a sustained period of activity including a 3-month Government sponsored awareness campaign.

It must be about twenty years ago since the first World Alzheimer’s Day and we should not forget that the disease is a global issue.  If you want more facts and information about this then go to the website of Alzheimer’s Disease International who, it must be said, established World Alzheimer’s Day in the first place.  They also do one of the best international conferences going.

Recalling that very first World Alzheimer’s Day, I believe we tried to get off the ground an idea which essentially involved passing a petition around the world in 24 hours to be rather ceremoniously signed by all the world leaders.  It just shows you the optimism of that time that the stumbling block was not our belief that we could get people to sign it, but that we couldn’t trust fax technology! Who knows what you could do now that we have social media at our disposal – perhaps we are about to find out?

But some of the best awareness campaigns and efforts will undoubtedly occur locally.  One of my favourites from my time visiting Alzheimer’s Society branches all those years ago was the gentleman, a carer, who had plastered his car with Society logos and slogans as well as painting his car a ‘house’ yellow.

I seem to be involved in a variety of stuff around the dementia challenge at the moment and very exciting it is too. These projects include a national register for people with dementia and their carers to put forward their names to take part in clinical trials.  Hopefully I’ll be able to update people via the blog in due course.

Finally, a quick update on a previous blog I did about a PLoS one paper which highlighted the fact that people are not given good quality information about placebos when signing up to a trial.  Well, I’ve been contacted by the researchers today to say there is now going to be a follow-up piece of work to develop and pilot better patient information.  You can see their comment at the end of the original blog here.  Excellent.

The Cochrane Collaboration has just launched a new website which explains how systematic reviews work, and the ways in which consumers can use the Cochrane reviews to inform decisions about their own health.

Entitled ‘YourHealthNet’ there are some very honest and candid appraisals of the usefulness of Cochrane reviews, how the evidence can be both empowering but also pose other challenges for both patient and clinician.  An important piece of work.

 

This morning’s news bulletins are full of stories trailing the Prime Minister’s speech in London later today, when he is expected to launch a national challenge on dementia – from accelerating research funding and setting up a new academic science centre, to establishing a national screening programme and encouraging people to donate their brains to research.

Just over twenty years have passed since I climbed the steps to the offices of the Alzheimer’s Disease Society (now called the Alzheimer’s Society) then situated above a branch of the Abbey National Building Society on Balham High Street in South London, to begin work as their parliamentary officer. In those days I think the Society spent about £75,000 on research compared to the several million both it and Alzheimer’s Research UK spend today.  How far we have come?

Twenty or so of us were crammed into that office and I seem to remember working off the top of a filing cabinet for much of the next three months before we moved into central London.  Either that, or travelling round the Society’s local branches up and down the country; a network of the impassioned – spouses, sons, daughters and friends, brought together by their common experience of caring for a loved-one.  Yet it was also a community isolated by this shared experience, such was the stigma and lack of attention paid to dementia then.  And this sense of abandonment by society seemed cruelly accentuated by the very policy that was supposed to remedy it – community care; but that’s another story. It is still shocking to me that ‘then’ was 1992 and not 1892.

Over the last two decades, there has been much progress in terms of public awareness, the treatments available to people with dementia, and in terms of the quality of health and social care provided.  But the variables in determining whether, as a carer or as a person with dementia, you receive the right support and help are far too many.  The decisions by commissioners, providers and others that influence them, can feel far too abitrary.  The resulting isolation for loved-ones and their families, all too real.

For too long, dementia has suffered from a lack of attention and forward-planning at the very heart of Government which has been so pivotal to progress in other diseases such as cancer.  Today’s expected announcement by the Prime Minister, David Cameron, is therefore important not only because it comes from the top, but also because it begins to put in place key components of a strategy – from boosting research funding to improving diagnosis – which put dementia on a par with cancer, heart disease and other conditions as a national priority.  I am looking forward to seeing the full plan.

I hope also that the Prime Minister’s anticipated choice of words in describing what needs to happen  – ‘a national challenge’ – will begin to change the lexicon in common use when it comes to dementia; away from the numbing defeatism and ageism of ‘crisis,’ ‘timebomb’ and burden etc towards a more considered terminology which will inspire a shared commitment and endeavour.  We should never under-estimate the power and importance of language in these campaigns.

One final reflection.

It is pure coincidence that last week I had to pen the Foreword of a new book by a colleague.  In it, I mentioned how I witnessed people with dementia – aided by earlier diagnosis and new treatments – begin to have a voice and directly influence their care as well as local and national policy for the first time.  I have no doubt that their advocacy has been instrumental in getting us to this point.

Given the concerns over the quality of care home provision in the UK, it is essential that we invest in research that will improve care-giving in these settings for the future.

The Dementia and Neurodegenerative Diseases Research Network (DeNDRoN) have just launched a new toolkit (website) entitled ‘Enabling Research in Care Homes (ENRICH)‘ to help promote and facilitate research in care homes.  The website shows how everyone from researchers to residents and their families can take part.  And although the primary focus is on dementia, the guide has been designed in such a way so as to be applicable to other conditions too.

Apologies for the slow-blog week.  Four days out and about made it difficult to put pen to paper…