• More to be said about the one day I was able to be at the 10th UK Dementia Congress 16 November 2015 | View comments

  • 16th November 2015 | By David Jolley

    Caroline Sutcliffe and I were part of a parallel session which took aEuropean view. To be honest I have not given a lot of time to the international field: I did once go to Holland and saw their enormous Nursing Homes and on another occasion followed, bewildered, in a group which visited Sweden and Denmark. We met lovely people who were developing services for older people with dementia and other mental disorders and there was real sense of shared mission.

    Over the past three years I have been privileged to share with colleagues in Manchester in an eight country study looking at current services and profiles of people with dementia cared for at home but on the cusp of breakdown, or recently admitted to a care home when life in the community was found to be too difficult. Caroline presented an overview of the study and its findings: http://sites.nursing.manchester.ac.uk/pssru/research/ServiceArrangementsandIntegration/RightTimePlaceCare/

    Social circumstances of people at home were quite different country by country, with a South to North drift away from living within multi-generational households (Spain) toward living alone or with a husband or wife (Finland). Arrangement of services and who provides what are also different. Never-the-less the characteristics predicting breakdown were consistent across countries: living alone, being very old, having more severe cognitive loss and more impaired abilities for self-care were all associated with breakdown, as was the presence and intensity of non-cognitive symptoms. Stress on the main carer, either directly from their involvement with the individual with dementia, or from a combination of responsibilities, was also a powerful contributor to moving into care. Amongst those people moving into care during the follow up within the study, measures of non-cognitive dysfunction were reduced once they had moved as were measures of carer stress.

    So I would say there is quite a lot within this that says we should view admission to care as a more positive option within the spectrum of services, than is currently fashionable.

    The most significant news of the week has been the death of Peter Ashley. He was a charismatic figure:  massive and unbowed by his diagnosis of Lewy Body Dementia. He was pleased to have the diagnosis as an explanation of symptoms he had not understood. He devoted his last years to making it clear that people with dementia are PEOPLE. They have knowledge, views and can make practical suggestions which are beyond those which professionals might offer. Famously he refused to sit in God’s waiting room to die:  

    ‘I am living with dementia, not dying of dementia.’ 

    That is not to say that dementia is not a terminal illness, it is, but the years of life with it are to be lived to full effect and enjoyment. As I understand it, Peter did not die of dementia but of another terminal illness, with dementia. I guess that will cause him to smile in reflection.

    He has been a hero and made a large contribution to bringing dementia out of the shadows and to counter the fears and stigma which have been associated with it. We will remember him with gratitude.



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    Susan Mary Created on 17/11/2015 19:14

    I am sorry to hear about Peter Ashley's death. He was amazing and did an enormous amount of good in showing that people with dementia can continue to contribute to those around them.
    I too know of people who thrive when they go into care and whose quality of life improves substantially. The trouble is that I can't tell who will thrive and who will hate it.
    I also feel that we don't share learning across Europe and we could gain a lot by sharing across borders.
    This is a brief comment. I'm on my narrowboat being buffeted by the storm at the moment. Keep up the good work Dave.

    David Jolley Created on 17/11/2015 22:15

    Thanks Susan Mary - Our lives are touched by the people we meet through their difficulties and the things they teach us in their adjusting to imposed limitations. Peter Ashley was one outstanding individual, but you know I met a dozen - patients and family carers - on Monday and there will be more tomorrow in Dukinfield. So much to learn from other counties - and we are feeling closer still to Europe. Keeping an open mind and not being rolled along unthinking by PC/NICE guidance: we must stand for the best interests of individual patients and carers. For the most part the decisions are made jointly - we are but informed servants in the process. Hope the boat can stay afloat through the storm on the cut
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