My wife is an enthusiast for low tech approaches to getting things done without burning fossil fuels. We are both enthusiasts for being respectful to ordinary people and realising that we all have abilities which can be fostered or crushed.

This month’s issue of Small World caught my eye, especially the quotation from Dr Fritz Schumacher:

‘The gift of material goods makes people dependent, but the gift of knowledge makes them free – provided it is the right kind of knowledge of course’

He was thinking of developing countries where people lack basic resources including clean water and sanitation. But the ideas have relevance more widely.

In Manchester and no doubt other towns and cities there is controversy over decisions and ‘consultations’ which are requiring cessation of some sorts of surgery in local hospitals and their relocation to other hospitals which are designated expert. From Ashton under Lyne you go to Oldham for eye problems and Stockport for genitourinary disorders. The most recent upset will see general abdominal surgery removed from Wythenshawe hospital (University Hospital of South Manchester) to concentrate resources at Stockport. Colleagues quote figures which say that outcomes in these specialist centres are better. I wonder quite how ‘outcomes’ are being defined. I do not like a system which sees me as a collection of organs rather than one person who may have a number of pathologies but wants to be treated as someone.

How often are we to say: ‘The surgery was successful, but the patient’s life was ruined’?

My post-Christmas reading is: The Shepherd’s Life’ by James Rebanks. He accounts for the resilience and success of his family farm by their return to old fashioned systems which do not rely on subsidies or supplements from outside agencies. Old fashioned is good to me.

I am unhappy with the way that agencies in support of older people and people with dementia have lately gone to a central model providing handouts and commissioned services rather than a grass roots multiplex which feeds ideas and strength to a central liaison and information-exchange hub. I suspect that the experience of – Rose-Marie Droes from Holland which we heard about at Telford can help us. She began to encourage local people with dementia and their carers to come together and decide what they most needed. They found a meeting place and looked for resources which would work and that could be afforded. Thirteen centres in Holland, maybe more by now, are doing this. Other countries are picking up this the model: http://www.meetingdem.eu/. The extraordinary Dawn Brooker in Worcester is the UK lead.

I wonder if we might join this movement through our ‘Conversations’.

I have been privileged to work with Dr Michael Tapley, Ann Regan and other colleagues at Willow Wood Hospice, Ashton under Lyne since summer 2010. We have developed a specialist service to help people with dementia as they approach the end of their lives using the model pioneered by Dr Victor Pace, Sharon Scott and others at St Christopher’s Hospice. In doing this we have come to work very closely with colleagues in other sectors who are caring for people with dementia and their families. This led us to establish an informal tea time network event which meets once every two months at the hospice.

Tapley M, Regan A and Jolley D (2015) A UK hospice plays host to a local network of people involved in dementia care. European Journal of Palliative Care 22 (4) 165 – 168

This week the session was led by Pam Kehoe who is an Admiral Nurse and has the Dementia Lead within Tameside’s General Hospital. This is a massive responsibility and one which draws upon all Pam’s experience and personal qualities. She was sharing the story of Dr John Gerrard who suffered greatly when admitted to his local general hospital. This so motivated his daughter Nicci that she has established John’s Campaign: www.johnscampaign.org.uk/

This asks that when adults, including older people, disabled by dementia or similar conditions are admitted to hospital, their carers be allowed to stay with them and contribute to their care and treatment. The campaign asks that the families of older people are granted the same respect and privileges as the families of children in hospital. It is well established that children are more likely to make good recoveries and progress when properly supported – and the same is true for older people with disabling conditions.

Not rocket science – but it took an individual tragedy and an able and motivated family to make the point and begin to get things done.

Pam has support at Tameside’s Hospital for the campaign and its requirements to become active there. Over 200 hospitals around the country have signed up – Is your hospital one of them? – brilliant if they are – best tell the Chief Executive about it if they are not.

Lots of other simple but effective ideas were exchanged. A lady from Public Health (Public Health is doing wonders for people with dementia in Tameside) gave me a Twiddle Muff – I am ashamed to say I did not know about Twiddle Muffs – I do now – and they are being used to good effect to calm the anxieties of ladies in Ashton under Lyne.

www.best-alzheimers-products.com/twiddle-muff.html

Now muffs might be used by men too – but there is the alternative (for either gender) of a Twiddle Box – or some such bit of kit which has knobs and hinges holes and corners, maybe a drawer or two. There are versions which can be purchased – but the charismatic Pam was moved and astonished when men from the Estates Department came along and proudly presented her with 20 boxes they have produced for use in the Hospital. She had not asked – but they had heard the story and seen the effectiveness of the muffs (which are being knitted by knitting clubs all around Ashton!). They could see an opportunity to use their skills – hey presto!

www.nursingtimes.net/Journals/2014/08/07/p/t/t/130814-Low-cost-strategies-to-improve-dementia-care.pdf

So the Hospice is a safe place within the spectrum of services for people with dementia.

Meeting informally over tea and cake encourages friendships and generates and shares ideas. Nothing here costs a lot – but the outcomes are priceless.

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.

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