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  • 4th January 2016 | By David Jolley

    Media attention over this holiday period has been dominated by concerns about the weather, rain and floods, especially in the north of England. Whilst this has been part of a global phenomenon of unusual weather, worries have surfaced that failure to provide the best flood defences in vulnerable places has contributed to the devastation.

    Attention has also been drawn to the murder of Rita King, an 81 year old resident of a care home in Essex by her 86 year old husband Ronald. There seems little doubt that Ronald was responsible for his wife’s death and had planned the act well ahead of the killing. She is said to have a diagnosis of dementia, her move into care was occasioned because he found he could no longer cope with her needs at home. He is himself disabled and had booked to stay at the care home over the holiday period, taking with him the gun which would be used. He is quoted as saying: ‘She had had enough’.

    No doubt more details will emerge about the background and current factors but this is a personal tragedy for Rita and Ronald and their family and friends. It is an alarming happening for other residents and staff of the care home and everyone in the care industries.

    www.theguardian.com/uk-news/2015/dec/30/essex-care-home-shooting-pensioner-ronald-king-charged

    www.mirror.co.uk/news/uk-news/pensioner-shot-dead-husband-pictured-7091586

    Death in a care home is usually a matter of routine. Sixty percent of people with dementia die in a care home. But death at the hands of another whilst in care is unusual.

    In 2014 Ryan Guest - a 33 year old man killed his grandmother – smothering her on the instruction of voices which he believed to be God. He has paranoid schizophrenia and is now detained in Broadmoor. He had left another prisoner in a vegetative state after a previous attack

    www.bbc.co.uk/news/uk-england-bristol-27936735

    www.bbc.co.uk/news/uk-england-bristol-30374727

    Similarities include kinship to the victim and altered health of the perpetrator, but there are likely to be many differences between these cases. It is a constant worry that when people are under stress and have responsibilities for vulnerable relatives, they may take action which they believe to be well motivated but are damaging or destructive.

    Reducing circumstances which produce or compound stress, identifying trigger times and taking preventative action are things we will want to do and ought to do.

    In contrast we are more used to reading of problems in care produced by neglect or orchestrated institutional abuse:

    www.telegraph.co.uk/news/health/news/11442024/Police-investigate-neglect-claims-following-death-of-care-home-pensioner.html

    Orchid View 2013

    http://www.dailymail.co.uk/news/article-2465955/Five-elderly-residents-died-neglect-care-home-institutionalised-abuse.html

    Such happenings are also identified as consequences of stress within a system where care to the most vulnerable is underfunded and low in priority and kudos. Crises receive dramatic, scandalised headlines for a few days but these are rarely followed up by shifts of funding, training and ongoing support which might reduce the likelihood of similar tragedies in the future.

    Dr Claire Hilton is currently researching the work of Barbara Robb whose investigations and publication of ‘Sans Everything – a case to answer’ in 1967 gave impetus to the movement which generated Psychogeriatric Services (AKA Old Age Psychiatry) and other more positive approaches. Much has changed in the interim, but much remains unchanged and is challenged only at times of scandal. Blame is too often and too easily directed at immediate relatives or hands-on staff.

    The current climate is reflected in some of the statistics gathered by Age UK:

    Median time to death after admission to a care home: 462 days 

    Growth in population 65+ since 2001 – 11% - Growth of places in care homes – 0.3%

    Estimate of older people abused per annum: 500,000 (150,000 being in care)

    Day care places halved 2014 – 15

    Spending on Social Care in England – reduced by £770m 2010 – 2015

    Threshold for the provision of any care: ‘Substantial need’ in 85% of Authorities

    900,000 people with care related needs receive no help from formal agencies

    www.ageuk.org.uk/Documents/EN-GB/Factsheets/Later_Life_UK_factsheet.pdf?dtrk=true

    This is a man-made microclimate which leads to man-made tragedies. It can be more directly modified than the phenomena which are causing recurrent problems to the Lake District and other parts of the world. It is a question of will.

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    29th December 2015 | By David Jolley

    For those of us who turn first to the sports section or back page of the daily paper. Anything which brings together football and dementia is likely to get attention.

    This weekend the Guardian ran the story of American Football, concussion, traumatic encephalopathy and the long-term increased risk of dementia.

    http://www.theguardian.com/sport/2015/dec/25/former-nfl-players-concussion-movie-will-smith

    There is a film about to be released.

    When we were in Wolverhampton, Michael Clark and I organised open lectures on mental health matters. One evening we were pleased to invite researchers Andrew Rutherford and Richard Stephens from Keele University who knew a lot more than we did about the relationship between soccer and impairment of cognitive function

    http://www.bps.org.uk/news/heading-football-and-brain-damage-there-really-problem

    Our interest had been stimulated by the story of Jeff Astle, a West Bromwich Albion centre forward who had been famed for his heading prowess. Jeff died with dementia aged 59 and the coroner linked his condition to the repeated trauma of his working life. Rutherford and Stephens pointed to the many other traumas encountered by players during games and in training. They monitored players throughout games and measured cognition, relating any changes to actual events during the game.

    It was a time when we would regularly see John Terry and others concussed, not by heading the ball, but by heading each other. This is the picture which is now appreciated across a spectrum of sport including soccer for men, women and youngsters, rugby as well as American Football. Despite all the protective clothing and helmets worn in some games, the impact of tackles and unplanned encounters is potentially massive and harmful.

    www.theguardian.com/football/2003/jan/21/newsstory.sport5

    http://www.theguardian.com/football/2015/nov/24/fa-new-guidelines-concussion-football-players

    Perhaps understandably, the sport industry has not been keen to accept the possibility that dementia can be the consequence of people plying their trade. Many players are equally reluctant to believe that they are at risk but evidence mounts and many clubs maintain contact with former players through social clubs. Seeing is believing and people are beginning to take it in and modify practice accordingly.

    My first consultant trainer John Johnson had been involved with research amongst boxers. The work confirmed a condition Dementia Pugilistica www.neuroanatomy.org/2010/005_007.pdf. JJ saw this most impressively amongst Light Weight boxers who made their money as fairground fighters. They might have many rounds every evening. Their technique of riding punches by allowing their neck to extend repeatedly was deemed to contribute most to the damage to brain cells. In this condition and in footballers, the emergence of dementia takes years and so the link to trauma from which people appear to have recovered is not immediately apparent

    Some boxers and some footballers have developed parkinsonian syndromes which have been attributed to their sport – Mohammed Ali in boxing and ray Kennedy in soccer are notable examples.

    There are many other hazards associated with a successful sporting life and systematic studies would be worthwhile. You would think that it should be possible to use some of the fabulous money which sport now attracts to clarify these suspicions and to develop strategies to minimise risks. These could and should be applied to amateur players – Being involved in sport is a marvellous thing and is good for physical and mental health and social integration.

    We have to accentuate the positives but do what we can to eliminate the negatives

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    21st December 2015 | By David Jolley

    I woke this morning to find a starry sky – quite a contrast to the dinge grey/brown which we have had for most days recently – grey-brown above and drizzle or worse from heaven to the squelching earth below. There is no moon to see but these little specks of reflected light give a shape and geography to the world and draw wonder and explanations which are beyond their limits.

    Lights in the darkness are everywhere at Christmas – we have twinkling coloured lights in the Magnolia and other houses and gardens are decorated to say ‘welcome’ and ‘happiness’ in ways which reflect the feelings of those who live in them. Some roads are busy with such messages, others stay quiet.

    Cards come from friends nearby and from friends and family who may be far away and perhaps seen only rarely now. They are still part of us and we of them and this time of exchange gives reassurance. For Hilda, living with dementia, the cards give pretty pictures. The names bring images of faces and movements which may have long-changed but when the names are read out they come to life and rekindle emotions – thanks and sadness, whist – maybe regrets – just for a while and then fading as fast and as gentle as a candle: ‘Fast Forgetting’ they say in the Memory Clinic. The great George Melly, who was dying of cancer but with dementia, had it: ‘This Alzheimer’s is a wonderful thing – Every day a new set of friends to meet.’ Sound philosophy at work. For Hilda, son Andrew, visiting for the holiday, is greeted every time he comes through the door as if he had just arrived from Edinburgh.

    Carols and other Christmas music are secure in her memory box and she joins in without a second thought when the radio or piano offer a lead. Others give voice too, close and equal in the celebration. Most words come right, most tunes are well held. Wish it could be Christmas every day.

    One way and another we fell to talk about ‘lucid moments’ with an example of Winifred whose words are usually difficult to follow coming out with: ‘Am I dead and come alive?’ in a setting designed to mobilise memories and feelings linked to a well-known bible story. Making sense of the moment.

    Is this so different from the way we think and cope with the daily charge to grasp continuity within the sequence of change which comes with every blink?

    Other thoughts are on loneliness and kitchens – best give them their own time and space.

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    14th December 2015 | By David Jolley

    On Monday (7.12.15) I was privileged to spend an hour with colleaguesin discussion with senior people of the Law Commission who are working to rescue us from the present nightmare tangle of personal misery and national wastefulness which has been produced by interpretations of the European Court’s directive to this country to make proper provision for people who lack capacity by virtue of mental disorder and are in need of care. 

    I was with Baroness Elaine Murphy, Professor Alistair Burns, Dr Adrian Treloar and Dr Gianetta Rands who are all psychiatrist with long experience in the care of older people and people with dementia. We were joined by Baroness Finlay of Llandaff, Professor of Palliative Careat Cardiff and Chairman National Mental Capacity Forum www.parliament.uk/biographies/lords/baroness-finlay-of-llandaff/3609

    The Law Commission team was Rt Hon Lord Justice Bean (Sir David Bean), Chairman the Law Commission, Tim Spencer Lane, Law Commission, responsible for coordinating the work of the Commission in this area, Patrick Tomison, Research Assistant Law Commission and Olivia Bird, Research Assistant Law Commission.

    This is a tricky subject. The Law Commission has received almost 600 substantial responses to its consultation paper which floated the concept of an alternative to DoLS - Protective Care.

    The burden of our message was that neither a fully funded DoLS nor Protective Care seem to be quite right. Both will be/would be massivelyexpensive of resource of all kinds and will produce little or no tangible benefits, but will ‘certify’ a large part of the population to their disadvantage and stigmatization. Money syphoned off to this bureaucratic/legalistic process will be lost to more worthwhile care or treatment opportunities.

    This message comes not only from us but from a range of other sourcesand via many MPs.

    On Saturday morning (12.12.15) I met with my MP – Graham Brady www.grahambrady.co.uk/ in company with Councillor Michael Young at Altrincham Town Hall. They are fully appreciative of the difficulties and costs being met by Trafford MBC. Like others they are keen to see the problems addressed ‘with common sense’.

    The discussion at the Law Commission was impressive and encouraging. These very able people have spent a lot of time in care in gathering information, visiting settings and circumstances, listening to peopleand thinking hard. They are still listening and thinking. One avenuethey will pursue is to review what other European countries are doing in the face of this phenomenon – Looking at processes and standards.

    In my view the standard set by Lady Hale at Cheshire West, welded into permanency by the catchy but perplexing ‘A gilded cage is still a cage’, is unreasonable and has entrapped us. With time and patience we must break free for the benefit of people with dementia and others who lack capacity – and to avoid the bankruptcy of this and other nations.

    Talking with people, including local MPs must be one good way to proceed.

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