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.

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).

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.

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’.

Easter without Good Friday?

By David Jolley

An oversight by the church office left the weekly notices, and the quarterly plan with no mention of Good Friday. There was a service and it was advertised on a notice outside the church. I went to a service in the Church of England tradition but which welcomed our local Methodist people.

It set me thinking about Easter without Good Friday, Easter being a celebration of new life – Jesus raised from the dead, having been crucified three days earlier. That is a very specific celebration within Christian beliefs and teachings. The timing is linked to the Jewish Passover, but also to the lunar calendar.

This places it at a time when trees and plants are showing wonderful greens and some are in blossom. Birds sing and hurry about their business of nest building and feeding. This is the season of lambs and baby chickens. All these are celebrated just for themselves. I am not sure, but I would guess there have always been celebrations of spring before these days became adopted for our Easter. So many people now live their lives with no reference to a faith, but special days such as Easter remain important to their personal and family calendars.

The point about Easter though for Christians is the return to life, all-be-it briefly in human flesh, of Jesus who had died by crucifixion at the hands of the Romans, but at the behest of the Jewish community of which he was a member. The belief is that his spirit continues as a force and a means of communication and support. This is a belief which gave rise to a powerful religion, adopted and spread by the Romans and still filling lives in almost every part of the earth.

The joy and strength which came on that Third Day were released from the anguish and sorrow which the painful government execution had wrought upon Jesus, and those who cared for him and the messages which he taught.

In the muddle of it all, as we progressed through readings, I held especially tight to the business of crucifixion as a means of punishment, humiliation and legalised murder which was used for centuries and is said to have been applied to thousands of people. The reality of the commonness and squalid nature of the practice is a surprise to me – Specialness and glory attached to the three crosses on the hill is what I have known. The true context has a power of its own: this was sharing something dreadful with many others who had experienced it and would experience it in future.

Somewhere in this I was reflecting on the experiences of people I know very well, who have been struggling with dementia or other illnesses which bring an end to their lives – Firstly by changes which mean they can no longer do all the things that they have been used to doing. They are not dead, but they are no longer the person they were. For the individual this is a great challenge – having to receive when they have been used to giving: this requires growth into grace. For those who have lived with them and love them still, the task is even more difficult. It goes on, is remembered, and will continue after death. There are new beginnings: finding a friend or professional carer who brings peace and maybe humour, finding a service which breaks up the week or the day and is enjoyed by the individual who is unwell, accepting that life in this care home is OK – better than OK – and better than I was doing. New lives. The joy is extracted from the struggle.

Easter without Good Friday? I don’t think so.

I hope all this does not amount to sacrilege.

Several steps too far

By David Jolley

Our Friday seminar drew us to be aware of a short article in this month’s issue of Age and Ageing from Cochrane Foundation, with the intriguing title: When is Alzheimer’s not dementia?

The authors had published in January an article making similar points in ‘Alzheimer’s and Dementia’

They are writing about guidance on the diagnosis of Alzheimer’s disease by the National Institute on Ageing and the Alzheimer’s Association (NIA-AA) issued in 2018 and published in ‘Alzheimer’s and dementia’ . This new guidance moves matters on from guidance of 2012 which recommended the use of biological markers as adjuncts to clinical characterisation of Alzheimer’s disease, to make the presence of biological markers diagnostic in the absence of clinical symptoms. The markers identify amyloid deposits, fibrillary tau and neurodegeneration. They are demonstrated by examination of the Cerebrospinal Fluid and neuroimaging.

The conservative and highly regarded Cochrane commentators point out that the relationship between the clinical condition, which is what patients, family carers and their professional carers and physicians are concerned with, and these biomarkers is far from equivalence: some people who have clear evidence of the clinical condition do not have the biomarkers. Most importantly in this context, people with the biomarkers do not have clinical impairment and often never develop it.

While the use of biomarkers to define groups for research purposes is reasonable, the extension of their application to clinical practice is unjustified and potentially harmful. ‘Clinical creep’ is the powerful warning term the authors use to describe the inclusion of thousands of normal older people into the diagnosis of Alzheimer’s as required by the new NIA-AA guidelines. This might suit some commercial organisations and even charities, but it would misdirect huge amounts of funds and other resources and raise unsubstantiated worries amongst individuals, families and the caring public. In most economies, the application will be unthinkable – unaffordable.

The enthusiasm of the NIA-AA authors is understandable but it would be inexcusable to adopt their criteria into clinical practice for this would surely do more harm than good. Let us hope that the wise words of the Cochrane Group can hold the day.

Nature’s Therapy

By David Jolley

My attention was drawn to a feature in The Times of April 4th which advises of the benefits of a walk in the park:

The stimulus for the Times Science Editor, Rhys Blakely, to write was a study of cortisol and other stress hormones amongst people with and without exposure to urban nature:

It is quite wonderful what can be achieved by modern science and what interest and satisfaction we get from laboratory studies and measures.

Jane Gilliard and Mary Marshall had edited an impressive collection of papers: ‘Fresh Air on my face’ for Jessica Kingsley 2011 addressing similar issues from a number of perspectives.

Time in the outdoors, especially in places which give you green grass, trees, flowers and the birds, insects and other animals which find their homes there, is therapeutic. Outings are usually accompanied by gentle physical exercise – walking as a minimum – and by social interaction if you go with someone else – and people watching and serendipitous conversations with passers-by. It is an accumulator winner.

Yet we know that many older people, especially those with dementia, are not able to get out and about much. One report is that the average time out doors for a care home resident is less than two minutes a week – Less than two minutes a week!

We can become so distracted by the sciences of biochemistry and pharmacology that we ignore more powerful and modifiable approaches to improve life experience. Anti-psychotic medication is issued with a blanket hazard notice for the statistically significant reduction of life expectation associated with prescriptions to people with dementia: so many thousands of people are said to die unnecessarily. But lack of music and fresh air are just as damaging – the evidence is there. What can we do about it?

Families will always try to give people time for outings. Increased frailty makes the practicalities more difficult to achieve, but even a short walk with a Zimmer frame or a ride in the wheel chair, is valuable and valued. Care Homes face a challenge, but the best homes do make time outdoors a priority. They will ensure their garden is a good place for residents and visitors to spend time in. They may organise regular walks in their local park. This is time and person expensive. It carries a degree of risk. In most homes, the staff will require support from volunteers and visitors to make this therapy possible. But it can be done.