Some interesting ideas from Oxford

My daughter-in-law in law spotted this article and very kindly sent it to me:

http://www.oxfordtoday.ox.ac.uk/features/defending-brain

Most of the interesting article is about how Oxford University is trying to co-ordinate its research into dementia and bring together different disciplines with an interest in dementia:

Approaches to dementia, Mackay explains, have hitherto been fragmented between the different disciplines of gerontology, neurology and psychiatry — the latter two branches of cognitive science having diverged more markedly in the UK than in other countries. OxDARE aims to enable a more holistic approach, with the emphasis on translational neuroscience. This process of ‘translation’ involves bridging the gap between research laboratories and clinical settings, bringing science ‘from bench to bedside’ as Mackay puts it. 

This looks like a promising approach.

Another thought-provoking extract:

While dementia is chiefly associated with memory loss, it can involve cognitive impairment of all sorts, and ultimately describes a set of symptoms rather than a single disease. Psychologists are still debating whether there is a difference in kind rather than degree between dementia and regular old-age memory loss, which comes to us all. Since the physical differences in the brain that define Alzheimer’s or Parkinson’s disease are currently visible only upon autopsy, much research is being devoted to finding ‘markers’, from brain scans or blood tests, which will bring forward the point of diagnosis.

For now, there remains an uncomfortable, but ultimately humanising, sense that we are all subject to those small but significant memory lapses – magnified in the endearing stereotype of the scatty Professor – that place us somewhere on the same continuum as those who suffer from conditions such as Alzheimer’s. We owe it to those who are further down that line to name and face the reality of dementia, and give the research endeavour our fullest support. 

One cannot help agreeing with the conclusion.

Cameron's latest speech about dementia

A previous post (which has by far the most page views on AWD) discussed the Prime Minister's useful acknowledgement that Alzheimer's is a disease:

http://adventureswithdementia.blogspot.co.uk/2013/03/cameron-its-disease.html

Now, over a year later, he has addressed the subject again:

http://www.bbc.co.uk/news/health-27912473

I want to deal with this in more detail when I have the time so I'll just point out that he unhelpfully calls dementia a disease (which it isn't  -  see: http://adventureswithdementia.blogspot.co.uk/2014/06/alzheimers-or-dementia.html)

The comments underneath the article are the usual mixture of the insightful, the ill-informed and complete tosh.

Alzheimer's or dementia?

Someone asked online: What is the difference between Alzheimer's and dementia?

I can understand why the question was asked as the two names are often used interchangeably.

Dementia is not a disease but a set of symptoms which are a feature of many diseases, perhaps the most common being Alzheimer's.

There's a lot more than can be said but that is the basic difference.

It is very confusing that 'Alzheimer's' is used so often when actually 'dementia' is far more appropriate.

I was reading the blurb for the Alzheimer's Show which is coming to Manchester (isn't that's a bit odd, by the way, a 'show'?) and is described as 'the UK's only dedicated exhibition and conference for families and professionals caring for a person with dementia'. So why isn't it called 'The Dementia Show'?

A very unhelpful and unnecessary confusion, I would suggest.

A sad and disturbing story - An update

Here's the original story:

https://www.blogger.com/blogger.g?blogID=7237408454030911386#editor/target=post;postID=1838612873523825894;onPublishedMenu=posts;onClosedMenu=posts;postNum=9;src=postname

For our readers abroad and for anyone else who may have missed it, here is the latest:

http://www.telegraph.co.uk/news/uknews/crime/10892191/OAP-back-with-wife-after-poisoning-case-is-dropped.html

There are as, always in these cases, many questions left unanswered.  Why did it take three months to reach this conclusion?  Why was he arrested and kept without food and water for seven hours?  Why was he not questioned until late at night? Etc.

I will be watching for any further developments or statements, perhaps in three months.  But I won't be holding my breath.  He is, after all, just a poor and powerless old man of 83.

A pleasure to post this

So often, I read or hear about negative attitudes to people with dementia. Follow this link to see a short video which gives the other side of the story:

Heartwarming Video

There was also, incidentally, a recent online discussion which showed the UK police in a very favourable light in terms of their dementia awareness and willingness to help (this at a time when the UK police are under a lot of pressure because of their failings in other areas).

Maybe some people are worrying unnecessarily about their chances of developing dementia

I was quite shocked to find that a friend's mum and dad (both in their eighties) shared the assumption that her daughters (in their thirties) were bound to develop dementia.  This was based on the fact that both the friend and her mother developed dementia but ignored the fact that each of them had an entirely different kind of dementia.

I mentioned this to my step-daughter.  As S's mum had vascular dementia, we had discussed it before and I had found reliable information online suggesting that the number of people who will almost certainly develop dementia as a result of their genes is fairly small.  After our latest conversation she sent me a PDF document from Alzheimer's Research UK entitled 'Genes and Dementia' which I feel is pretty reassuring.

You can see the document by following this link:
http://www.alzheimersresearchuk.org/siteFiles/resources/pdf/ARUK_Genes_and_Dementia_2014.pdf

Some people with dementia do just fade away peacefully

In this dementia awareness week, I feel it's important to try to make sure that people have a balanced view about the effects of dementia.  I spend a lot of time reading heart-rending accounts of the real suffering of people with dementia and their carers and the final part of the dementia journey is often a dreadful experience for them.

Without denying their experience, I want to share a little information about my mum's journey to show that some people with dementia do remain contented in the 'end of life' stage and die peacefully.

This photo was taken just after my mum's 90th birthday:

She died 3 months later (AD on the death certificate). At that point she had been bed-ridden for getting on for 2 years. We saw her a few days before she died.  She was still smiling.  Her later years were spent in a Methodist Home for the Aged. Although they didn't normally look after people with advanced dementia, they were happy for her to see out her days in their care because she had contributed so much, always helping new residents to settle in, for example. They looked after her very well. She died peacefully.

She was, comparatively, lucky. So were we.

Dementia awareness (part 2}

* Hurrying and dementia don't go together well  -  aural and visual impairment may complicate things

When talking to a person living with dementia, it's a good idea to talk slowly and as clearly as possible.  Depending on the progress of the disease, people may first of all have difficulty hearing what you say and may then take longer than you might expect to process what they have heard.

Similarly, every day tasks will often be carried out very, very slowly.  It is very easy, to become impatient.  And totally counter-productive.

As well as hearing problems, people living with dementia may also experience visual impairment and/or they may, like my wife, have their eyes closed a lot of the time.  I often have to suggest that S opens her eyes when climbing the stairs or getting into a car, for example.  It helps!  As do the same little prompts each time.

* It's not inevitable that people living with dementia will end up in a care home but it's not always possible for them to be cared for at home

Carers often appear divided about this.  Some are determined to see the role through to the end, others assume that there will come a point when they will not be able to cope.

In reality, while most people living with dementia end their days in a care home or in hospital, others do stay at home.

It is foolish for anyone to express certainty about their ability to cope right through to the end as no-one can predict how the condition will progress in any individual. Sometimes carers find their own health breaks down, perhaps as a direct result of the stress the role brings, and the decision is taken out of their hands.

* Most carers continue to care for a person even after they have moved to a care home

Many carers visit very regularly and try to make sure that everything possible is being done to make the person they care for contented.

Relatives often worry that the person living with dementia will forget who they are.  This is not inevitable, and the more often you visit the less likely it is.

Dementia awareness (part 1)

As promised, here are some of the things about dementia which everyone who wants to be 'dementia aware' needs to bear in mind.

* Everybody who has dementia really is different from everyone else who has dementia.

 Yes! Really.  As more and more people are being given a diagnosis of 'mixed dementia' ('a little bit if this and some of that') and as more and more different types of dementia are being named it may be time to accept that there are as many kinds of dementia as there are people living with dementia.

As the wise saying has it: 'When you've seen one person with dementia, you've seen one person with dementia.'

* It's not just about memory

The public at large, and the media, appear to believe that dementia is all, or mostly, about losing your memory.  It is, in part, but the difficulties involved in living with dementia go far beyond being unable to remember who the prime minister is, for example.  You can live quite happily without being able to recall stuff like that.  As Iris Murdoch is quoted as saying, in response to that question:  'I don't know.  Does it matter?'

Of course, when someone loses the ability to write and, usually later, to read, you can call that 'forgetting' if you want to, but that doesn't do justice to the devastating loss of these abilities.

And when someone loses the ability to swallow and therefore dies, which is how most people with dementia die, to say that they have forgotten how to swallow is akin to saying that someone who dies from lung disease has forgotten how to breathe.

Worse still, for so many carers, are the personality changes which occur in most, though not all, people who have dementia.  Sometimes, it is true, people change for the better, and a person who has been cantankerous all their life softens and may even become appreciative of the help they are being given.  But more often, it seems, there is a change for the worse.  People who have always been warm and gentle human beings can become verbally and physically aggressive towards those they previously loved and harangue or attack them night and day.  Imagine that.

Even people who retain some of the qualities that made them so loveable tend to lose the ability to empathise so that when they are told bad news about someone who used to be close to them, they might make an appropriate verbal response but give no indication of being upset.  I suppose they've 'forgotten how to feel'!

* A person with dementia is not a child

Though there are obvious similarities between the behaviour of someone with advanced dementia and the behaviour of an infant, it is very important to remember that the person living with dementia is not a child, but a person who has decades of experience and memories even though these may no longer be accessible in ways that we can recognise.  This post contains a quote which explains why this is so important:

http://adventureswithdementia.blogspot.co.uk/2011/12/this-struck-such-chord-with-me.html

* The best way to relate to a person with dementia is to try to to relate to them as a person

Try talking to them.  You may be able to have a perfectly normal conversation with them.  They may take a long time to reply.  They may not reply at all.  You'll soon get some idea of what they are capable of.  And, as you get to know them, they will probably still surprise you.

Dementia Awareness Week

Dementia Awareness week in England runs from 18th to the 24th May.  This link to the Alzheimer's Society website gives more information:

http://www.alzheimers.org.uk/remembertheperson

In each area there will be different activities and events taking place.  Anything that raises awareness about dementia must be a good thing.

Even since we started on our dementia journey I have found that more and more people have some understanding of the disease.

In my next post I'm going to try to identify things that I think people need to know and understand about dementia.

An invitation from a TV documentary company

Twofour Broadcast, the production company behind Educating Yorkshire (www.twofour.co.uk/broadcast  ) are making a three-part documentary series for Channel 4 all about dementia. The series  aims to document the lives of people with dementia and their families whilst  raising awareness about the latest progressive techniques being used to help those  living with the disease.  We want the series to send out a positive message about dementia, and to show that there are ways to cope and live better with the illness for the sufferer and the carer.

Each episode will look at a number of  families  who are caring for a relative with dementia at home who have reached a certain crisis point and are starting to access outside help, or/and consider other techniques that can help their situation . The idea is to follow a family through this difficult process whilst they meet different groups and organisations,  who are using the latest and most up-to-date progressive techniques in dementia care and therapies.

We hope to show that the work they do will help give the carer a better understanding of their relative’s particular type of dementia and empower them to take steps to care for and communicate with their relative in a new way. Within the programme,  would like to illustrate the life the relative has led and aim to work together with the family  to find out about their past through life story work, music therapy  and reminiscence work. In some cases, by bringing particular care approaches into their lives,  we hope to witness the person with dementia re-engage with an interest or activity they may have enjoyed in the past.

We are looking for families who make like to share their stories and take part in the series. We sincerely understand how sensitive the area of  dementia is but we hope the series will send an important message out generally, and help eliminate some of the stigma associated with the illness.

I have been contacted by : Ceri.Hubbard@twofour.co.uk.

She has explained to me the kind of programmes they are aiming to produce and sent me the above summary.  If anyone is interested in talking to her and/or taking part in the programmes, she would welcome a discussion.

As a retired education professional, I was very impressed when she told me that this is the company behind Educating Essex and Educating Yorkshire, two of the best and most thoughtful programmes about schools that have ever been produced. I know, from hearing interviews with the participants, that great care is taken to ensure that everyone involved is happy with the finished product.

Anxiety and hypochondria

I have read posts by several carers for people living with dementia which mention that they, the carers, have an ever-present fear of getting dementia.  Usually the simplest common memory lapse will activate this fear.

Sometimes, when they have parents or siblings with dementia they worry about the possible genetic links, but often it's their knowledge of how common dementia is that causes the worry.

I don't have this particular worry  -  despite the fact that my mum had Alzheimer's  -  though I have, and have always had, a degree of hypochondria and, at a few points in my life, I've been convinced that I was dying.  Obviously, I was mistaken (except that we're all dying)!

Now that my life is largely involved with keeping someone I love alive, I worry about my own health in a different way.  I'm concerned not just about my own future, but also the effect any health problem may have on my wife.

Also, of course, as one gets old, and more and more friends and acquaintances fall by the wayside, real health issues, whether serious or trivial, tend to increase.

It all comes down to the well-worn cliche about taking each day as it comes.  It's not easy, but it makes sense.