Presidential visit

By David Jolley

This week has seen The Reverend Michaela Youngson and Bala Gnanapragasam, President and Vice-President of the Methodist Conference, visiting the Manchester and Stockport District. In the world of Methodism these roles are equivalent to being the Archbishop of Canterbury, but only for a year. This rapid turnaround goes with the Methodist tradition of an itinerant ministry – the standard arrangement being that ministers are attached to one place for only five years in the first instance, though this can be extended in small multiples of four. It has the advantage of bringing fresh ideas and enthusiasm to the leadership roles, but perhaps leaves considerable power in the continuity provided by the executive.

The three days of the visit covered a range of topics and locations: creative writing, public health and faith, local government, migration, a walk in the Peak District, MHA Sunday, Methodist Women hope and a Pentecostal celebration. I was pleased and fascinated to be invited with my colleague The Reverend Ros Watson, to be part of the discussion of health and faith – a consequence of our Dementia Conversations at Bowdon Vale.

It was an assembly to savour and to learn from: Bala himself has been Chairman of a major Acute Hospital Trust for eight years and has contributed to improved knowledge and services for people with HIV.https://www.christianaid.org.uk/contact-us/people/bala-gnanapragasam.

A is a retired nurse who worked up from cadetship to be a lead nurse. In retirement she is involved in a number of projects reaching out to ill and disadvantaged people, including people with dementia.

B1 is a minister whose adult son lives now in supervised care with his autism – the experience of trying to live with this as a family has been more than a learning curve.

Our hosts were C and F: handsome and gracious members of the Black Church where we were meeting – A building which looked to have been a two-storey workshop – with the upper floor now used as a church and centre for foodbank and other community activities. They emphasised the potential for churches to become involved in research and to contribute to discovering more about health and how to improve people’s health. They shared the surprising information that 80 percent members of the Black Community are associated with a church, so that researchers looking for subjects to investigate ethnic linked disorders find work with Black Churches extremely rewarding. Faye has been working on aspects of cardiovascular disease which is high amongst the black communities. Their great advantage in working with and through churches, is that the people trust the church and church workers, whilst they often have reserve or suspicion about mainstream health authorities and their advice.

Interesting – for my understanding is that a much smaller proportion of the white UK population are involved with a church, so that investigations amongst church goers are likely to be skewed by their atypical characteristics. In addition, my understanding would have it that many people today are suspicious and reserved about churches and religion – much more likely to have faith and trust in mainstream health care – and mainstream healthcare as a whole maintains a distance from religion. A recent review we looked at, at one of our Friday seminars declared itself to be about whole person medicine, but mentions only physical and mental dimensions: no room for a social context let alone spirituality or faith https://www.rcpsych.ac.uk/improving-care/campaigning-for-better-mental-health-policy/college-reports/2019-college-reports/cr222 (we must come back to this).

B2 has worked as a chaplain in a general hospital which went through years of criticism but is now managing better. Despite the setting and reputation of the Trust he has found people grateful for the care they receive and particularly pleased with the opportunity to share thoughts and feelings which the chaplaincy offers. His work extends to the local hospice which enjoys the highest regard and confidence within the town.

C is a GP who practices in the Peak District but makes time every week to travel to Salford to contribute to training which will produce a qualification for immigrant/asylum doctors to practice medicine in this country: a massive gift to these individuals and a boost to our services.

Ian is the minister at Manchester Methodist Central Hall which hosts a range of initiatives which reach out and provide home for the inner city peoples – older people left behind, homeless people, people whose first language is not English and who want to worship together www.methodistcentralbuildings.org.uk/ . Julie is a fabulous trainee minister, now in middle age but radiating raw warmth which has already reignited communities. Her current placement means she is Ian’s apprentice.

Dr Andrew Lunn is the Chair of the Manchester and Stockport District  www.mandsmethodists.org.uk/ – pleased to be part of this celebratory three days (now there is something: 3 days to change the world) – and thoughtfully enthused by this health and faith mini-forum.

Ros and I spoke briefly about Dementia Conversations and I added a bit about Christians on Ageing – 35 years in action but unknown to all but three of this group. The conference which will be held in Sheffield on September 25th is an opportunity to reach more people and realise the potential https://christiansonageing.org.uk/.

Looking at themes we found consensus that churches can do a lot in health care – physical health, mental health, social life and spiritual life. Helping people to trust the mainstream and helping the mainstream to trust us and other communities of faith. For some the need is for education and health promotion, for others it is rescue from dreadful circumstances, for many – help with illnesses when they come and go – readjusting to life with less strengths and abilities sometimes, living with chronic or progressive disorders which may last until death which may come early. Dementia is perhaps the most prevalent of these latter – a model for caring and working toward adjustments. Communities of faith must be accepting of people who are different – by illness or by other attributes. ‘Dementia Friendly’ is one level toward progress. Conversations aim to go further.

This was a most encouraging and inspiring, frank meeting of thinking and active Christians. It will be good if the group stays together for a while to see what can be achieved.

People who lunch

By David Jolley

We began with what we called a ‘Biggish Lunch’ in 2014 – Joining in at short notice the national initiative of the Eden Project to encourage people of local communities to sit down one Sunday in June and get to know each other a little better. www.edenprojectcommunities.com/thebiglunchhomepage

It worked brilliantly, drawing people together and setting up a membership of Friends of John Leigh Park, which thrives and does a little more in the community around the park year on year. Friends of John Leigh Park

This year it rained a bit – and the forecast was for quite a lot of rain, so our numbers were down. That was disappointing, but in its way it brought the feeling of closeness even stronger. We had a great line up of things to interest lunchers: dance by a local dance-school – youngsters showing off the results of training week by week and interpreting modern music. Dance by the Bollin Morris – new for us but with a long history – Fabulous cloaks made traditional from strips of rag, flowing in the colours of blue and purple to simulate the flow of the River Bollin. Music from the violin, accordion and tambourine. Big black hats. Blued faces. Big sticks which are clattered in time. Oh how the dances can bounce in rhythm – and amongst the adults, smaller people – half their size – These are the Morris Minors! See how they dance – and we were invited to join in – instructed gently by these Minors – I couldn’t bounce – but the thrill of the music and the disciplined movement took hold well enough.

The powerful tones of the Cadishead Brass Band carried across the park and through the nearby roads and streets. Tunes which are there inside all of us – released and shared – The link between memory and emotion loosened in pleasure or sorrow. Nothing compares.

But later there were other tunes, with guitars and keyboard – bringing back the 1960’s, 70’s and more.

There were displays of woodcraft and baking and a Friendship Group which makes it easy for people to travel to places they have always wanted to – but have not dared – and can if they are in company.

There were cunning and hilarious games for smallish people – a relay through hoops and a tunnel and balls to take too and fro. No water this year! But fun that hugs in children and parents who have not known us before. Later we could decorate Ginger Bread People, and make a dream-catcher – Just like the BFG – made from twigs and strands of coloured wool. Magic.

There was a 5 a side footie squall – all endeavour and skills and determination. Triumph and cups and medals for eager and disciplined boys – Some of whom might sometimes stray to mischief – but this was straight – and just as joyful as joy can be.

We made teas and coffees and there were snacks and fruit and juice- Served by kindly ladies, including a local councillor and others with notable other lives. We didn’t do the gymnastics, and the slack rope walker did not show.

It rained a bit, but we did not mind. There were still ice-creams, and it was warm even if a little damp.

We were of all ages and from varied backgrounds. People talked of this and that and especially of other times like this with music and dances and games and picnics and sheltering from the rain.

It is old fashioned. It reaches memory and emotions in a painless therapy.

Walking together

By David Jolley

The week started with a group of local dementia activists joining us on our weekly health walk. They brought balloons. We had bubbles left over from a recent spring-clean in the toddlers play area of the park. These fragile, beautiful, coloured, floating ephemera welded our joys. Joy at the freedom to walk, togetherness in knowing and showing that sharing simple things has tremendous power for healing.

This was Dementia Action Week. The Guardian included a special enclosure fronted by Kevin Whately (Sergeant, later Inspector, Lewis). His article: ‘Conversation is so important’ tells of the support which he and others in his family gave to his mother during her years living with dementia. They were grateful for the contributions of neighbours and also had the unique facility of repeats of programmes featuring Kevin as Lewis. Every little helps – but this is quite a wonderful present for mum. His use of the word ‘conversation’ is so welcome. It is the title Barbara and Dementia Pathfinders gave to their initiative on the Isle of Wight and which we have adopted in Bowdon Vale. It works so well: Kevin Whately’s summary is ‘All it takes is a conversation to see we’re still us’.

Also within the supplement Neil Mapes of Dementia Adventure speaks to the benefits of time in the outdoors. Today’s paper recommends extra Vitamin D for everyone as current generations spend so much time indoors, locked to a computer of electronic game. We have reflected on the extreme indoors experienced by many residents of care homes who so rarely get as far as the garden. The same can be the case for people with dementia and older people with other frailties who are still at home – and almost always indoors. So our walk in the park struck the right chord. It is near to home. It is tailored to the strengths and weaknesses of those who come along. And there is tea and crumpets when we gather at the end and look forwards to next week.

There are other articles which float prospects for research into the basic biological characteristics and possible prevention or treatment of dementia, including an approach to modifying genes (led by Roger Bullock who I have known quite well). These may be fascinating, almost science fiction and powered by endless hope, but I remain happier to encourage the application of what we know. We know that the incidence of stroke and dementia is reduced when people live easier, better balanced lives. Some people take advantage of this. Others need modifications which only governments can control. We know that when dementia enters a life, it can be better lived with if we maintain conversations, make it possible for people to enjoy music, exercise and the fresh air in ways which are designed to be OK for them in their altered state.

ne more step along the road we go.

Conversation carries on

By David Jolley

We have been meeting monthly to share thoughts on living with dementia for over three years now. A dozen (baker’s) gathered on a fine afternoon. The discussion was frank and illuminating. We shared stories which told of the damage which dementia will do to individuals and relationships. We heard too, that individuals retain many aspects of themselves, and their place in the immediate culture despite dementia. PERSON with dementia.

A brother still living and working on the family farm in Wales. His losses of competence compensated by understandings all around – and the vestiges of previous routines allowed to continue, though the hazards are acknowledged.

The question of changes and how far a partner who remains at home can continue to be welcomed and play a part in everyday life when it is no longer shared. Trusting but monitoring another regime of care. Useful to hear what others are making of it – but a solution for one may not be right for others. Living with criticism harshly expressed, while beyond capacity, hurts even if it is invalid. Staying close and regularly there is what you do.

Looking to keeping a rich life of experience going, balancing risk of an adventure against the safety of staying in familiar territory, is taxing. Working on a hunch risks disappointment, expense and despair. Ask me and I might tell you not to try it. If you do it and succeed there is a flush of triumph – overcoming the monster – not letting it run your lives. In all things people will want to do what they believe, at the time, to be in the best interests of the individual with dementia – and respectful of lessons learned in a long-term journey of shared decision making.

We heard of the care which airlines will take when they know that an individual has dementia. We wondered about the insurance implications. We got to know that what for some of us would seem to be a very stressful prospect, for others has been taken as practised routine.

Study courses – including some excellent new material on-line – are valued. One of the outcomes people find is that they do already know a lot and are doing things at least as well as others in similar circumstances.

Soccer, head injuries and dementia are again topical, in the news and helpfully drawing attention to the long-term consequences of some activities – and of the issues which face people with dementia of any cause.

We touched on the House of Lords’ Report on Intergenerational Fairness – But there is more to be made of that.

This is for real. The lives we lead.

Heads – you lose?

By David Jolley

This being the last day of a fabulous soccer season, which has seen Manchester City and Liverpool FC compete so fiercely that they have finished first and second and 25 points clear of the third club Chelsea. English teams will provide finalists in both the Champions League and the Europa Cup. This is our national game and has a huge following at all levels.

On Saturday I received a press cutting from a friend and colleague, which reports his concern that heading footballs is so hazardous that it should be banned in games involving children under eleven years of age, and ‘curtailed’ in older players. https://www.telegraph.co.uk/football/2019/04/25/dementia-research-doctor-calls-ban-headers-under-11s/

This is a fairly old chestnut. My friend first shared observations on 14 professional footballers who developed dementia 16 years ago. There are several reports on the phenomenon in the intervening years. Perhaps most famously, a coroner declared that Jeff Astle, the West Bromwich Albion and England centre forward had died of dementia caused by his career-long fame as a frequent header of the ball. My memory is that subsequent post-mortem findings showed that his brain had evidence of cerebrovascular disease, rather than the Alzheimer changes we might have expected to be associated with repeated head trauma. It is changes of the Alzheimer type which are found in brain-damaged boxers. More recent studies have begun to talk of Chronic Traumatic Encephalopathy (CTE). www.ncbi.nlm.nih.gov/pmc/articles/PMC5325836/

I read an article a few years ago which reported a high incidence of dementia coming early to footballers in Italy. Other reports suggest that amyotrophic lateral sclerosis may be more common in professional sportsmen. https://academic.oup.com/brain/article/128/3/472/692974

There is general reluctance to accept and face this issue. We love the game. People who play it love it and some become famous and, these days, rich. More research is being conducted but Don Williams and others feel we know enough already to say that action must be taken.

He must be right – but what should be done?

While much discussion focuses on heading and the weight of balls, this is almost certainly not the only route to damage. Soccer is a contact sport and clashes associated with heading or attempting to head the ball are amongst the most alarming of its consequences, though fractured legs are dreadfully and immediately damaging.

Age related bans may not be popular, nor is the idea of wearing helmets routinely. I wonder if a modification of the rules for all categories of soccer to bring it in line with hockey might work: Foul called whenever the ball is raised above shoulder height.

Well – It is supposed to be football. I can see such a move would accentuate to primacy of skill on the ball and in passing. Goal posts would need to have the bar lowered.

All this is important in drawing attention to dementia of all causations, but it does offer the prospect of reducing the hazards for soccer players. Well worth it.

New life from old

By David Jolley

This Bank Holiday Monday we had three cars at Dunham Massey Village Car Boot Sale. We have had stands at Dunham or St Margaret’s church Bank Holiday sales since 2014. These are joyful days – usually in sunshine – or at least this is how I remember them, and with lovely people. Donations come to us as Friends of John Leigh Park, from members and supporters to raise funds for activities, plants and whatnot for the park. It is a way that many people feel they can help when they are pushed for time or lack the strength to help directly.

Items which come to us carry stories of lives which have passed, and now look to a future with others. A bag of golf balls – Bad back means the end of a golfing career – but maybe that back will be OK for our informal bowling sessions, and a young hopeful can practice away for a few pennies with the golf balls.

A boxed set of 50 original Mr Men books. Memories of stories read and eager faces which listened, rubbery pencil-tops with the wriggly arms of Mr Tickle – Do you remember? This lead to talk of Roger Hargreaves, the author, coming from Cleckheaton in Yorkshire and then on to Joseph Priestly who discovered dephlogisticated air (oxygen) and who came from Birstall – also in Yorkshire!

A newly acquired bunch of plastic flowers decorated a green vase which had been with us for a year or more – sold now to an early customer.

That old print in a frame marked with woodworm carried a story of its owner, now deceased, who had family connections in the village going back many years. The print is coloured – unusual for the times – and by Ernst Dorn, 1889 – 1927 of Munich. There had been a German Prisoner of War camp near the village and at least one German stayed on to work in the farms after hostilities had ended. Maybe this picture had something to do with them.

One stall was offering a free croissant to purchasers. They were raising funds for a trip to do good works in Borneo.

Another specialised in microscopes and provided free seminars on the topic, with enthusiasm and brought back hours in the biology lab examining the product of pond dipping.

There were refreshments prepared and served by cheerful ladies of the village. They shared stories too.

A great tradition. Therapy without the name.

Malignant alienation

By David Jolley

Our Friday seminar this week brought us into contact with what the presenter called, with apologies, ‘an old paper’. Hardly old in our terms as ‘Malignant Alienation: dangers for patients who are hard to like’ from Professor Gethin Morgan and Dr Darryl Watts was published in the British Journal of Psychiatry in 1994. Yet it is a classic.

Watts and Morgan were referring to the possibility of suicide amongst psychiatric patients, but their observations are applicable to every situation where people come under the care of others. The concept relates to those in care who lose the sympathy and support of staff who see their behaviour as provocative, unreasonable or over dependent. Sometimes staff feel that the cared for individual is manufacturing or exaggerating symptoms. As antipathy and loss of trust escalates, the cared for individual feels increasingly unsafe, under threat from those she should be able to turn to.

How can this ever happen? Patient factors, staff factors, patient-staff interaction and environmental factors are identified:

Patient factors: Studies have identified

  • A lifelong inability to form and maintain warm, mutually interdependent relationships
  • Marital isolation i.e individuals who are married but the marriage lacks open and warm feelings and communication
  • Distorted communication of dependency wishes – failing to demonstrate what the problems are in a way that makes them easy to understand and accept as genuine
  • Help negation – turning away well intended offers of help

Staff factors: studies identify ‘narcissistic snares’ which render staff vulnerable

  • ‘Heal all’ – but not everyone will get better
  • ‘Know all’ – the temptation to assume omniscience is sometimes fostered by flattery and expectations from the cared for individual or family. Sometimes things happen which are beyond previous knowledge and accepted wisdom.
  • ‘Love all’ – transference and countertransference may vary wildly from the imagined mutual bliss of generous caring, gratefully received

Much of ‘therapy’ depends on the personal contributions of the carer. When matters do not progress as hoped, this is as a personal injury – helplessness, guilt and rejection may follow.

Staff-patient interactions: Some people in care are identified as ‘difficult to help’. Amongst psychiatric patients studies characterise these as including: people who are psychotic and withdrawn, people with character pathology – manipulative, playing people off against each other, demanding, those who are depressed and suicidal, and people exhibiting violent or agitated behaviour we they are caring for. ‘It is just not acceptable – I came into this job to care’.

If these feelings are not recognised, acted on and defused they will show themselves – Malicious words or behaviour can be exhibited which is distressing and potentially dangerous. More subtly staff may withdraw from interactions, leaving the individual in a vacuum of non-personhood by aversion. This is arguably more undermining and less easy to identify and respond to than overt malice. In either of these scenarios the antipathy may not be formulated in words but is evident from non-verbal behaviour.

Alternatively the unacceptability of this may give rise to reaction formations – finding hate-fuelled feelings being unconsciously interpreted into over solicitous interventions and interference.

Rationalisation and projection may designate the ‘difficult to care for’ as guilty: ‘a hopeless case’, ‘a dangerous person’. Respect is lost and replaced by indifference and eventual rejection.

Reflection: These principles were elucidated by concern for potentially suicidal patients in psychiatric care, but Watts and Morgan observed ‘It may also be possible to extend these ideas out of the psychiatric ward and into other caring environments where malignant alienation could occur’.

This is surely true for people with dementia and for older frail people who require care. Such dynamics may not result in suicidal acts but will be associated with misery and reduced appetite for the life which remains, withdrawal, failure to thrive and death earlier than might have been.

Much to be learned from this ‘old paper’.