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  • 25th July 2016 | By David Jolley

     

    Last Tuesday was THE hottest day.

     

    Steve and I travelled the lanes from Altrincham to Wilmslow to catch the train to London.  Temperatures there were predicted to rise above 30 degrees C.

     

    We were to attend Dementia Pathfinders’ celebration of what is going on, at the Hallam St Conference Centre. This is not far from Euston, so a walk is the best way there. Lunch at the Royal College of GPs – convenient, cool, quality and dignity with a modern twist – just the right mood.

     

    Starting with a hug from Sandra – this was to be a great afternoon. We met our colleagues from the Isle of Wight – Veronica and Vidya – it was they who, with Barbara, had begun the Dementia Conversations movement which we have followed and hope to see adopted in lots of other places. Strange how at ease you can feel with people of similar spirit, even though you are meeting for the first time. Veronica just twinkles openness and honesty in pursuit of truth. No fudges.

     

    Participants were skewed to female and youth – well, younger, and looking and moving with confidence and grace. These were people gathered together by Barbara, with a message and delivered with bubbles.

     

    The strength in this initiative lies in the real personal experiences of the main players, and their determination to harness these with their many skills and talents to make things better:

    We heard of love tested and not found wanting by dementia, which came too early. On reflection it does seem that Early Onset Dementia is something different – as Mr Alzheimer would agree,

    We were reminded of Margaret Butterworth and all she stood for http://www.kcl.ac.uk/sspp/policy-institute/scwru/events/mbchf/About-Margaret-Butterworth.aspx

     

    It was moving to hear the accounts of generous, dedicated care being provided by three modest front-line staff who were in receipt of rewards. They are valued in this – but how far is their value reflected in the status and financial recognition given to them in the routine weeks?

     

    Tina English is encouraging faith communities to use their strengths and memberships to take love and support to older people without visitors in care homes – a winner with minimal extra resources.

     

    Then there was dance – dance in several formats and then broken down to its basic elements so that we could follow and join – and soon Steve was dancing with Veronica – They were both surprised and very pleased.

     

    Music and movement – making magical communications where dementia had seemed to fragment all meaning and understanding.

     

    Dementia Pathfinders is stepping aside from the mainstream – not to deny its strengths, but to add some alternatives, which relate to individuals, to special places, to special individual strengths, shining through the difficulties.

     

    And then there were quiet conversations after the main event – or maybe this was the main event – for we discovered extraordinary connectivity, some based in unsuspected historical and geographical links.

     

    There is something special happening – it was a very warm day – a melting pot of possibilities.

    We will see what we can make of them.

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    17th July 2016 | By David Jolley

     

    The thing about meetings of our Conversations group is that one thing leads to another...

     

    In our opening discussions this week we found ourselves talking about journeys and their relevance to the difficulties encountered when people have memory problems - as in dementia and related disorders. We reflected on trams and trains – which sometimes don’t work and where there are losses of service because of repair works. There is need for help and guidance from others, when we don’t know a new system. Sometimes this is from professionals (men in orange vests).

     

    Buses offer more flexibility – but for many of us are a world of mystery. Again there are experts amongst us – we might learn from them. There are maps and time-tables but for many of us a human interpreter is necessary to make best use of them.

     

    People remembered getting about in WW2 with the Black Out. Often there was no transport and people walked miles to get to work or get home.

     

    Cars offer so much more immediacy and flexibility – but they may break down. Fast roads and lack of signs leave people bewildered. There is the story of the couple heading for Scotland but who spent the day going round and round the M25.

     

    We heard about the hazards of being in a strange place – R who disappeared during a hike in the Lake District and E who was lost in an airport. So these are times and places to take special care.

     

    We reflected that there are devices these days – iphones and others which can be helpful – and there are some devices specially designed to be used by people who cannot cope with complexity. People have discovered safe hands and safe places – a homecare service, a carers’ group, a local hospital which uses Memory Boxes.

     

    W had very good support made available to her when her dementia was identified in another town has not been replicated since moving elsewhere. In our previous session L and D had described in detail the limitations of services in their new setting. J and B described their disappointment and sadness that changes in services have left them without the good support they had previously enjoyed. J described a complex matrix of support from family, friends and services – some of the latter comes only because of involvement with a research project.

     

    I would say that most support will always rely on family and friends and the long-term health care input requires active interest and commitment by GPs and the Primary Health Care teams – the specialist Memory Services and Old Age Psychiatry Services are not funded to carry this work directly.

     

    Journeys are often given as metaphor for the progress of individual lives and in this discussion the metaphor and the reality of living with dementia came repeatedly mixed – mutually supportive and illustrative. There are virtual reality apps which may help us know more of what life with dementia is like www.bbc.co.uk/news/technology-36433868 but it seems to me that we can and do experience this in real life when we are out of our comfort zones, aroused with anxiety when there is any pressure of time, and when what was predicted does not work out.

     

    Important to see how safe reference points and kindly people can make things so much less terrifying.

     

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    12th July 2016 | By David Jolley

    There are papers and papers – so many papers published now that are relevant to dementia, people with dementia, or older people with difficulties of mental health in later life: some are really special.

    I think Carole Brayne’s papers are wonderful and amongst these ‘A two decade dementia incidence comparison from the Cognitive Function and Ageing Studies 1 and 2’ www.thelancet.com/journals/lancet/article/PIIS0140-6736(13)61570-6/abstract is especially important.

    The review of relevant literature reminds us of the Domesday forecast for the future of a world drowning in dementia. These forecasts are informed by extrapolation of prevalence rates and incidence rates identified in studies 20 years and more ago. There are a number of studies from the USA and Europe which hint of changes – lower incidence and lower prevalence maybe. These studies have shown trends but most have lacked power to obtain statistically significant, robust findings.

    The CFAS studies drew on large samples drawn from Primary Care Registers 1989-94 and then 2008-11. An earlier paper – Lancet 2013 Oct 26; 382(9902) 1405-1412 had found that the prevalence of dementia in Cambridgeshire, Nottingham and Newcastle (summed) had fallen from 8.5% to 6.5% between these two time slots. Extrapolating the 8.5% estimate to the population of England and Wales gives a national prevalence of 884,000. Using the actual prevalence discovered 2008-2011 the figure becomes 670,000. This is a reduction of 214,000 or 32%.

    This most recent paper looks at incidence – the number of new cases of dementia developing during a two year period from the baseline assessments. The findings are so interesting and so important:

    The easy take-home message is that incidence fell by 20%.

    The detail says that the fall was small in women, but evident in all but one of the age-bands included. For men the fall was dramatic – evident in every age-band and most emphatically amongst those who are 80-84 years and 85+.

    Estimates based on incidence findings from the early 1990s had forecasted in the order of 250,000 new cases per annum nationally by 2015. Using the updated findings, the calculation yields only 209,600 – a reduction of 40,000 or approaching 20%.

    So the picture is changing – it seems likely that education and health promotion, based mostly on cardiovascular risk factors, is having an impact.

    Most interesting to me, though, is the additional detail: falls in incidence are seen in Cambridgeshire and Nottingham, but not in Newcastle, where incidence rose from 16.7 cases/1000 person years to 20.6.

    Looking at the population by Townsend’s Deprivation Index and postcodes – incidence of dementia fell amongst the wealthiest and middle band of postcodes – but rose amongst the most deprived. The figures from the 2008+ cohort show a fairly steep gradation: 14.0 new cases /1000 person years amongst the wealthy, 18.7/1000 person years in the middle band and 20.6/1000 person years in the most deprived.

    The incidence of dementia is shifting – it can be shifted further if individuals take note and take action.

    On a bigger scale there is encouragement to provide better lives for the most disadvantaged so that they are less likely to develop dementia, with all that means to individuals and families.

    But dare we say it – the economics have to favour this egalitarian move, for reducing the number of people with dementia by a third will be a massive cost-saver. Any medication that had such robust evidence of benefits would be supported by NICE without hesitation.

    Do the people who can make these sort of changes know about this?

    Are these changed findings of incidence and prevalence, and their relationship to deprivation, reflected in the dementia map/calculator of NHS England?

    Should there be a revision of target numbers for GPs taking these new findings into account?

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    All I want 04 July 2016 | Comments (0)

    4th July 2016 | By David Jolley

    I can’t stand your meetings

    I’m fed up with your conferences and conventions

    I want nothing to do with your projects, your pretentious slogans and goals.

    I am sick of your fundraising schemes, your public relations and your image making

    Do you know what I want?

    I want justice – oceans of it

    I want fairness – rivers of it.

    That’s what I want. That’s all I want.

    This is not me raging against established charities, The Government or The Council – This is Rachel Lampard MBE making her statement on assuming her position as Vice President of the Methodist Conference: www.methodist.org.uk/news-and-events/news-releases/stop-trying-to-fix-the-poor-says-methodist-vice-president

    And these are not her words but come from The Message translation of The Book of Amos 5 21-24 – written in the 8th Century BC.

    Yesterday we were able to join the Methodist Conference service in which Ros Watson and others were ‘received into the full Connexion’. What a funny way of speaking these Methodists have – and even after this and having passed all their qualifying examinations, the new ministers had to go to another service in one of several churches near or in London to be ordained – We felt a reference to line two above might be worth a try.

    Nevertheless, it was a powerful experience – and summed with words from Micah, another prophet:

    And what does the Lord require of you but to do justice, and to love kindness, and to walk humbly with your God?

    Wisdom for all times, all places and all circumstances.

    As Dr Ann Johnson shared with us in 'Dementia Conversations' a few weeks ago:

    Do you want to know how to help me?

    ‘Love me, and be with me’

    And Robert Davies: ‘Don’t try to help me with words – Walk with me’

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