If the truth be told

By David Jolley

The 14th Dementia congress was held early in November 2019 at Doncaster Racecourse. We were there two years ago for an impressive meeting, notable for the excellent signage which had been designed by people with dementia. The signage was good again – as was much else.

The opening debate asked us to consider the issue of truth telling and in particular the pros and cons of design features in Care Homes which aim to produce an impression of being elsewhere: ‘environmental lies’. Many of us did not understand this terminology without explanation, but it was certainly good to be directed to the report from the Mental Health Foundation which has examined the issue in detail https://www.mentalhealth.org.uk/publications/what-truth-inquiry-about-truth-and-lying-dementia-care

The words ‘lie’ or ‘lying’ carry moral judgement – ‘a false statement made with the intention of deceiving’ (Chambers Dictionary). This tortured an otherwise sensible and sensitive discussion towards one which felt like a contrived conflict with some purists seeming to object to any décor which might bring residents, visitors or staff to feel the false comfort of a library wall (wallpaper), a street scene or bus stop. Having visited many people in their own homes, I have been endlessly surprised, entertained and amused by the variety of ‘mock-ups’ which people produce within their own homes: a church interior, a garden, public bar and so on. To describe such creations as lies seems absurd to me. They are well intentioned and intend to help people relax, be diverted and to live their lives, not to bamboozle them or make fools of them.

But what came over powerfully from the interchanges was the quality, commitment and caring credentials of the people who had gathered here.

Later in the evening gave change to share reflections and plans with Barbara and Jude over a wonderful meal at the Earl of Doncaster – All Art Deco – Living the lie if there was one.

Breakfast with Maria brought an update on the progress which has been made through the realisation of the power of the arts for the benefit of people with dementia and their carers – and for the rest of man and womankind. https://creativedementia.org/about/

I caught some of the Early Bird Wednesday morning session with Kim Wrigley and others describing developments in Greater Manchester with Dementia United: http://www.gmhsc.org.uk/news/dementiaactionweek2018/

In the gap before the main plenary session I went up to the Royal Box to check it out ahead of our Early Bird session there on Thursday. Situated on the fourth floor, the room and balcony offer a fabulous view of the racecourse and beyond. I was surprised to find Vivienne Depledge of Dementia Adventure out there on the balcony. She told me something about the work of her organisation and its belief that time in the outdoors is essential for good health. She implored me to hold our Thursday morning session on the balcony. This might have been interesting but the weather on the day argued against it.

The plenary session, led by Ron Coleman, Wendy Mitchell and members of tide (together in dementia every day) was inspirational. Jeremy Hughes had been delayed on his train journey, so Dawn Brooker held the Chair. The session had a title something life: ‘I believe in the benefits of new technology – however.’ We heard Wendy telling of getting used to a tracking system which regularly told her family she had taken off to China. We heard Ron, who comes from the Isle of Lewes (population about 1,000 – everyone knows everyone. We don’t lock our doors). He has an understanding wife and a special relationship with Alexa. The combination allows him to remain in the driving seat – but prepared to hand the steering wheel to others when needs be. ‘Technology without humanity does not work’.

We heard about Zoomettes: www.dementiavoices.org.uk/group/zoomettes/ Mondays at 5.30pm for ladies with dementia to talk on line.

We heard of Deepness Dementia Radio www.deepnessdementiaradio.com/

More inspiration – and massive admiration for these people.

We had no visit from a government minister – all bound to election duties. Jeremy Hughes arrived and gave a brief eulogy for the work of the Alzheimer’s society.

Professor Payam Barnaghi www.surrey.ac.uk/people/payam-barnaghi told us about ground-breaking work using machine technology – Just bewildering to the likes of me, but we will be pleased to make use of the discoveries when they come to us.

What a great start.

I watched videos produced by Dementia UK https://www.dementiauk.org/?gclid=CjwKCAiAh5_uBRA5EiwASW3IanXzruUJ1UGVZdoRvq77m-lEefsuLxATnh97Ft5-P-1dT0StJ1odrRoC0IEQAvD_BwE

These include an animation giving information for children and another which features interviews with young people who find themselves as carers of parents or grandparents.

And I met more people. They told me about their work – and also about themselves.

The Tom Kitwood Memorial Lecture was Chaired by Alistair Burns and delivered by Steven Sabat Treating people with Alzheimer’s: The non-pharmacological approach. | OUPblog

He is a sensitive, perceptive and caring man. He was clearly moved by the shared spirit of the congress. His humility called for the same from all of us.

I had gone back to the Truth seminar. This was not confined to décor but focussed on communications verbal and nonverbal and included references to Tom Kitwood’s observations on approaches which are helpful to people with dementia, and others which can be destructive. It was a good session and encouraged us to access the report – we will.

Lasting memory – a quote from a man with dementia:

‘If you treat people with brutal honesty, they will remember the brutality’.

Working with dementia:

By David Jolley

Our weekly seminar threw up another interesting and important challenge: advice to someone who is still working, wants to continue to work in their chosen career, but has changes which may mean they have dementia.

Many years ago I was one of three ‘wise men’ tasked with ruling on a colleague who had suffered a traumatic brain injury, was declared recovered and had returned to work in a skilled and responsible capacity. Over a period of weeks no reports had been received of any inadequacy in his professional work, but he had been involved in three accidents when driving his car.

At a simple level it seemed clear that his highly paid, responsible skilled work was less demanding than the task of driving his car competently.

We are often faced with questions relating to safety to drive and a diagnosis of dementia. It is agreed that the diagnosis itself is not sufficient to require that a licence is revoked, but an individual will be subject to careful assessment and regular review if it is felt that continuing to drive is reasonable for now.

https://www.alzheimers.org.uk/get-support/staying-independent/driving-and-legal-requirements

Much less is written about balancing safety and personal rights when it comes to continuing with work or hobbies when dementia is suspected or diagnosed. This issue is becoming more important as shift of the age threshold for receiving a pension, and removal of the routine expectation that individuals must retire at a proscribed age mean that more people are working in the age bands when dementia is more prevalent.

Chaplin and Davidson could find no relevant publication before 2016 and offered a study of five cases: https://journals.sagepub.com/doi/abs/10.1177/1471301213519252

McCulloch, Robertson and Kirkpatrick looked at 69 studies in 2016. They found only eight covered the ground and from these extracted some common-sense guidance and thoughts.

https://journals.sagepub.com/doi/abs/10.1177/0308022616665402

The Alzheimer’s society has recognised the growing problem and offers sensible observations: Alzheimer’s Society’s view on employment of people with dementia

It seems likely that guidance similar to that we have for driving will be required for a range of possible hazardous activities.

Dementia is everywhere.

Light and sound

By David Jolley

Not quite son et lumiere but something to take note of. Found in the Guardian this week a reference to research which has found that exposure to light or sound flickering at a particular frequency – 40 hertz has impressive effects on experimental mice. The neurones of the exposed subjects become more active. Where mice have been prepared as models of Alzheimer’s disease, the amyloid, plaques and tangles are cleared away by re-energised cells and the creatures return to a more able state.

I have not known about this, but the research has been developing and appearing in publications over a period of five years. The big step forward is that the flickering light therapy is being trialled in human subjects with evidence of the early stages of Alzheimer’s disease: https://www.theguardian.com/society/2019/oct/22/radical-light-and-sound-wave-therapy-could-slow-alzheimers

This might sound a little cranky but it is different and has just a feel that we may be on to something. I guess it is the haunting humility with which we recognise the power of music to bring people out of their locked-in state that says this approach may turn out to be productive.

Another enthusiasm is the return of aducanumab to the realms of promising wonder-drug, after months in the doldrums when analysis of trials showed it to be ineffective. Re-analysis has demonstrated a statistically significant improvement for a subgroup of patients in the early stages of Alzheimer’s disease. First drug that can slow Alzheimer’s dementia.

I am not sure this sort of cherry-picking – searching the data for parts which tell the story you want, is allowed. There will be more to run on this. The concept of zombies which keep on walking (beliefs which persist even though the evidence is against them) has a general applicability beyond the setting where I became introduced to it – The belief that our ageing population is a source of burden and expense.

Nearly time for Doncaster – And I have belatedly discovered Journal of Dementia Care is now in new ownership – Will the join be showing?

Safety in numbers

By David Jolley

As so often our weekly seminar drew attention to the state of our world. We considered two case histories, looking for lessons in practice and in sharing information effectively.

One concerns a lady who is ‘homeless’ at the age of 70. She has been homeless for about three years, having run out of money spent from an inheritance following some years caring for an elderly aunt. She would work but only as a solicitor, for she believes she is qualified for this. She did work as a clerical assistant in a legal firm some years ago, but has no formal qualifications. For a time she slept on the streets or rode 24 hours on buses before being taken to hospital for assessment on an order of the Mental Health Act. Six months in hospital has been followed by 18 months in a flat, one of four designed to help people find their feet in the community after long periods in hospital. She should move on but does not find any of the options offered to her acceptable. She is only one person but her intransigence threatens to fuse the whole resettlement programme for a city. The flow of demand against supply finds the bottleneck of supply too tight. People are furious with her and with each other.

Our other scenario relates to a man in his eighties who has become confused, aggressive and violent in a care home. He has an obvious infection under the skin of his left leg. The doctor who went to assess him found himself pursued with a butter knife – Perhaps not too dangerous, but the intent was there. Request for support from an Approved Mental Health Professional (AMHP) revealed a waiting list of 30 requests for such support – Priority being given to younger dangerous persons in the community – So essentially do what you can. This tied up the doctor, staff at the home, four policemen and two paramedics for three hours: admission via A and E using common law. Pity there was not intervention before the infection developed to such a crisis. Pity there are not enough AMHPs, goodness knows there are not enough police to cope with routine needs let alone side-track four for all that time.

Thinking on from last week’s witness seminar I might dwell on changes to Mental Health Legislation since the 1960’s, but mostly I look at the loss of capacity within the system: not enough people, not enough beds, not enough options. There are comparisons made between the tightness of fit within the NHS and the need for some spare room to make things safe in the aviation industry and indeed in all others where there is a flow of demand which is variable. The tightness is counterproductive – leading to crises and miss use of resources in the short term just to cope – miss use which has longer term effects through the deprivation of response to people in lesser states of need until they become of crisis proportions.

Can we make things better within current budgets?

Are we hampered by too many rules?

I was shocked this week to be told by a group of older people considering Brexit, that any moves toward a fairer distribution of wealth in this country would ‘bankrupt the country’ within five years. And I wondered what it might mean to bankrupt a country. The House of Lord’s report on Intergenerational Fairness taught me that the government’s gross debt has risen form 33.7% of GDP in 2001/2 to 85.4% of GDP by 2017/18. Is this not bankruptcy?

Wiser use of resources of all sorts must be possible.

I was there

By David Jolley

Eleven years ago it was my privilege to attend a witness seminar in the University of Glasgow which brought together people involved in the early, pioneering days of Psychogeriatrics – latterly Old Age Psychiatry. https://www.gla.ac.uk/media/Media_196526_smxx.pdf

This last week I travelled to the Royal College of Psychiatrists which is these days sited in Prescot Street, East London, to a witness seminar focussed on ‘Psychiatric hospitals in the UK in the 1960s.’ The main participants were, by definition, now in their sixties or well beyond, for we were to talk about our personal experiences, to ‘time travel’ back into the era and describe what it was like then and how you were involved’.

We spoke from the perspectives of people who had been born and brought up as children of staff in a hospital, a medical student, a patient, a social worker, nurses, an occupational therapist, clinical psychologist and several consultant psychiatrists. Those present include trainee psychiatrists, historians, academics and others. Speakers were given five minutes only to introduce their session – which then ran to 30 minutes of discussion. It was a full day, the discussions informed and lively. There was time for refreshments, which were generous and good and released even more relaxed exchanges.

The transcript will be checked and corrected and then made available on line. A brilliant way to capture history in its facts and in the atmosphere of the time.
We were looking at the whole span of mental illness and the care and treatment of patients and families, essentially for adults, including older people. There was only brief consideration of younger people and children.

The 60’s were years of change in society as a whole. For Psychiatry there was the 1959 Mental Health Act and the arrival of new and effective therapies: medication, ECT and social and psychological approaches. The main setting was large mental hospitals: 2,000 beds and more. What we shared was the horror of life available to patients, families and staff before the revolution of care in the 1960’s, the exhilaration of being part of the changes and our debt to the brave and determined heroes – lay and professional – who carried these changes forward and brought education and information about mental illnesses and their treatment to the general public. There may have been a few flaws of memory and distortions linked to feelings, but this was a mighty day, remembering all this – and inevitably comparing the then with the now, which has so many advantages but falls frustrating short. Powerful lessons have been learned and lost. Are we allowed to use them anew?

In all ways. I am glad to have been there.

Words and music

By David Jolley

This weekend we have visited the past – a Sunday service built around the songs made famous and popular by Dwight Moody and Ira D Sankey in their Christian revivalist campaigns of the 1870s in the USA and Great Britain. Moody and Sankey in Great Britain, The Gospel Awakening, Dwight Lyman Moody, Christian Classics books at BibleStudyTools.com

This was following on from our recent Dementia Friendly Harvest and aimed to capture something of the nature of life and togetherness of these times, past now, but with strands of songs which still come easily to mind even after all these years.

The tunes are lively, sometimes quieter and thoughtful but always simple and easily picked up. Joining in is not a problem.

Taking note of the words was revealing for they tell of life of those times – and the dominance of mortality which is pocketed away for special times only in our current world.

We began with Praise Him, Praise Him! A song for children but laced with the need for protection, bleeding and dying of our blessed Redeemer. What did they make of it?

Count your blessings is the happiest of choruses, but set against a background of life’s billows, a load of care, conflict and envy of those who are rich on earth.

Will your anchor hold is a firm favourite and still the anthem of the Boys Brigade. Fabulous certainty in a world of danger.

Softly and tenderly Jesus is calling – a pleasant and alluring enough refrain – but verse three reflecting:’ Shadows are gathering, deathbeds are coming, coming for you and for me. True of course.

Fascinating to know that renditions of these songs drew thousands of people of all ages to follow Moody and Sankey and pledge their lives to the church.

We had a copy of a sketch of Moody with his ‘guttersnipes’ – pretty dreadful looking street urchins who, we are told, joined his bible study group and loved him! D L Moody and his guttersnipes – Google Search

Not a formula that feels likely to work today, but worth trying the weight of and acknowledge the lasting impact of those times on the lives of generations.

Time together in Sheffield 2019.

By David Jolley.

September 25th Christians on Ageing held their first conference since 2015. We met at the URC church in Sheffield which has been the location for AGMs and Executive Committee meetings for some time. It felt like home and we were able to welcome 40 delegates to a day which brought people together (networking?) with time to talk, presentations on some key themes, a review of publications and reflections on what the organisation has done and might aim to be doing from here on.
There was a steady flow of hot drinks or cold, biscuits and a very satisfactory lunch c/o Mark’s and Spencer’s. Everything was done ‘in house’ using the URC kitchen. It felt like home.

There were delegates from the far South and from Scotland, and pretty well the full geography of the UK, but with a dominance of the immediate North. There were more women than men and a fair spread of ages from 20s into 80s (and maybe beyond).
Quite wonderfully we found that we could not make the computer system work, so there was no PowerPoint, and viewing of a newly produced short video will need to be via the website at people’s leisure. The microphone was not on the best of form first thing but improved later. We should do better on these technical quirks, but we were not dismayed and made good use of basic communication skills.

The introduction reviewed some of the work which has been done during 35 years and drew attention to the considerable success of producing a new and responsive website. This, together with a quarterly email newsletter, the quarterly magazine ‘plus’ and the six monthly Dementia Newsletter represent the means by which Christians on Ageing makes contact and shares its messages. There were presentations on the position and perception of older people in the UK 2020, the potential and practice of dedicated ministry to older people, humane care for older prisoners, and current understandings of dementia, its impact on individuals and families, and the potential of churches to help. These were of uniformly high quality with combinations of information and inspiration. Written versions of each paper will be published in plus quite soon. Questions were perceptive and sometimes searching.

There were two discussion sessions, the first in small groups around tables and the second, and last session, an open forum. These were vigorous, enjoyable opportunities to sound out ideas, raise doubts, identify prospects and establish links and friendships. From them we have a range of suggestions for the future – The heart of the organisation is beating a little faster and a little stronger.

Lunch was followed by 30 minutes of music – led by a Sheffield U3A Ukulele band. They gave us tunes we knew and words we might remember. It was a bonus of coordinated relaxation which pointed to the values of togetherness which must mark all we do. A brilliant fillip.

We are thankful for the URC’s generosity in making their facilities available and to their staff for their guidance and support. Thanks to everyone who helped organise the day and make it happen. Glad for all who came and shared themselves and gave prospects for the future.

Thanks to Dementia Pathfinders, for the model of their annual special days encouraged us to break the ice.