Export trade of people with dementia

It has been a given of good practice that people are best cared for at home or near home, whether ill with a physical illness, or a mental illness or dementia. It is shocking to read that some older people with dementia are being placed for their last months of life in care homes at the other side of the world: https://www.theguardian.com/society/2020/jan/12/families-sending-relatives-with-dementia-to-thailand-for-care

This revelation comes from a study by researchers from Newcastle upon Tyne and the University of British Columba who found older people from the UK living in eight care homes that they visited. The reasoning behind individual placements no doubt varies with their specifics, but common themes seem to be the cost of care in the UK and its unsatisfactory profile – not enough staff to make people safe and comfortable, stories of rough handling and worse.

Correspondence in response to the initial article has been uniformly positive. Can Thailand provide better dementia care than the UK? | Letters

It comes from people who are well travelled and often have personal and continuing family involvement with Thailand. Even so one lady was able to visit her husband three times within a year. There are potentially serious and complex ethical and practical issues: freezing of pension and benefits, need to pay for all medical care, not to mention the matter of lost mental capacity and informed consent.

I have a memory of being involved in a Panorama ‘expose’ in the 1980s when old people from the South of England were being transferred to cheaper care in the North. It was suggested that the patients knew no difference because they were demented. We countered this by observing that people with dementia are more sensitive than ever to the nuances of shared language, culture, food, dress and ways of moving. The idea of moving people out of their natural territory at the end of their lives, like passive animals simply because this will be less expensive for them, their family or social services, is unpalatable. But it is happening everyday within towns and cities of the UK: the extension of the practice to an international scale is arguably a logical extrapolation of this.

To me all aspects of this are wrong: the premise that home is important to almost everyone, and the place we want to be when we are ill or dying, is sound and undeniable. When matters are too difficult for life in our own private household, a move to a good quality local alternative where our people can visit is the preferred option. We must find a way of making this possible.

Inherent jurisdiction

Return to our regular Friday seminars introduced me to the concept of ‘Inherent Jurisdiction’.

https://www.mentalcapacitylawandpolicy.org.uk/wp-content/uploads/2016/02/Inherent-Jurisdiction-Note.pdf

We heard the story of a gentleman in his late 90s who had been living alone and neglecting himself. His son came to live with him to provide help, but the son also had difficulties and was thought to be exploiting his father and the situation. An episode of illness took Douglas Meyers into hospital – from there he was placed in a care home and continued recovery. He was visited by his son and expressed a wish to be allowed to return home. Assessment of his mental capacity at first suggested he lacked competence to make a decision on this matter, but further assessment confirmed that he did have capacity. The situation was referred the High Court by the local authority and heard by Judge Sir Philip Drury Moor

https://www.publiclawtoday.co.uk/lexisnexis/550-lexis-lg/lexis/localgov/adult/40082-high-court-s-inherent-jurisdiction-for-the-protection-of-vulnerable-adults

https://sfe.legal/deprivation-of-liberty-inherent-jurisdiction-southend-on-sea-borough-council-v-meyers-2019-ewhc-399-fam/

His view was that Meyers, who is blind and has diabetes, has capacity but that his wish to return home would be hazardous if it was to be in the company of his son, and that his decision was influenced by pressure from his son. We understand that Mr Meyers has been enabled to return home with a comprehensive support package, and in the absence of his son www.bbc.co.uk/news/uk-england-essex-47574356

Overall this is an informative and reassuring story: The use of ‘Inherent Jurisdiction’ has allowed what would seem to be common sense to prevail in a situation where unthinking application of the rules of the Mental Capacity Act would have left a very vulnerable old man exposed to the risk of further exploitation and hazard.

The case got us talking about similar scenarios we have encountered over our years in practice. It gave chance to remember individuals whose extreme conditions of neglect burned deep into our memories. We also remembered the families, staff and other colleagues who helped resolve situations. We were pleased to rehearse more about the Diogenes Syndrome www.thelancet.com/journals/lancet/article/PIIS0140-6736(75)91280-5/fulltext

Many people who get into such states are found to be mentally normal – not suffering from a major psychiatric disorder, though some do. In the presence of a mental disorder, the Mental Health Act might be useful. In its absence there was Section 47 of the National Assistance Act 1948. This was used variably by different authorities. There is a note in Section 46 of the Care Act 2015 that Section 47 of the National Assistance Act has now been superseded by the new legislation The Care Act 2014: Promoting well-being, safeguarding vulnerable adults and funding | Bevan Brittan LLP

The use of Section 47 was reviewed by Tim Spencer-Lane 2009.

Spencer-Lane T (2009) Lost in a legal maze: Community Care Law and People with Mental Health problems. Journal of Mental health Law pp 139-148.

Areas of experience and practice which give colour to our routines – to be remembered, but still encountered day by day.

Here’s the church, here’s the steeple

By David Jolley

We learned a nursery rhyme – a fingers game which went:

Here is the church,
Here is the steeple,
Open the door and see the people.

This last week Simon Jenkins wrote in the Guardian about the physical attractions of churches www.theguardian.com/commentisfree/2019/dec/27/britain-churches-cathedrals-anglican

He says he is a church-lover, but not a church-goer – by which I take it he means that he is not a person of faith but is attracted by the stonework, coloured window stories and the music which is associated especially with our parish churches and cathedrals. He also points to the vigour and financial success of cathedrals and Christmas services, comparing these with the small and fading congregations which characterise routine Sundays.

The article provoked seven letters published in response: www.theguardian.com/world/2020/jan/03/faith-in-the-church-and-its-ability-to-survive.

Leigh Hatts’ thoughts on how to respond to the falling congregations in rural and other churches have messages for us and the use we in the dementia world are making of the church network. She advises against a rotation of services between churches to a ‘complex railway time-table’. Instead we should respect the wishes of congregants who want to worship in their own place at a regular time, even if not many come. This would require modified services to be conducted by local people – devoted but not qualified.

Many church buildings from all denominations are being used as venues for dementia cafes, pop-ins and more. This fits with Barbara Stephen’s reflection on the potential of this readymade network. More and more church communities are working to be dementia-friendly, which is a big step forwards – see the people. But Barbara and the Reverend Veronica Brown took us further in their establishment of Dementia Conversations – This allows us to meet Dementia and its effects upon lives, self-belief, experiences and beliefs in spiritually, regularly, carefully and in a safe local setting. It will be good if the message can be spread more widely.

Writing wrongs

By David Jolley

I have been reading Cassandra Farren’s ‘I’ve lost my mum’. This is a short, self-published book in which she describes her experiences and feelings during the years in which her mum has been changing with a progressive dementia.

I might never have taken note of the book, let alone read it, but Cassandra was speaking of her experiences at the Dementia Pathfinders/Agewell celebration where I was privileged to deliver certificates of success to local people who had received training in the care of people with dementia.  There are now many books written by people with dementia or caring for family members with dementia. My favourite remains Robert Davis’ ‘My journey into Alzheimer’s disease’

https://books.google.co.uk/books/about/My_Journey_Into_Alzheimer_s_Disease.html?id=mDPOAPjQmAsC&redir_esc=y

Written 30 years ago, this is also a slim volume. It shares an honest, accurate account of feelings from a man being restricted and changed, and his pertinent observations on what helps and what does not help.

Every month our Dementia Conversations receive and share accounts of lives altered by dementia, and the responses from individuals, carers and others. There is therapy and learning in this. Cassandra has gone a step further by writing out her journey, sharing also those many other aspects of living which are concurrent with this time of seeing and feeling the changes in her mum. She lets the reader into the actions of everyday as revealed by transcripts of emails between her and her father and sister. This is a very open, raw method of communication.

It makes me angry to read how much she and her family feel left alone to find their own way with dementia by a specialist service which seems to see its task as complete when it makes ‘a good diagnosis’. Blame this on the commissioners of services, maybe. Blame it on those who have gone on and on about delays in obtaining an accurate diagnosis. Diagnosis is useful only if it is established within the context of a caring, supportive, informed service which will travel with the individual and their family through all the changes, to death and beyond.

There is my short rant! Heard it before? We will hear it again.

There is much to be learned from accounts such as Cassandra’s – learned by others who have family or friends with dementia, perhaps people with dementia, and certainly those who are engaged in providing and funding services. There is also much value for the writers. Ordering your thoughts, feelings and observation, setting them to paper where they can be revisited at different times and in differing modes of emotion, is therapy.

Not all such diaries will come to publication. They are no less worthwhile.

 

Taking it all in at Christmas

By David Jolley

Our recent General Election positions this country as determined to leave the European Union and hitched to policies which have increased poverty, homelessness, inequality and death rates.

Christmas finds our church foodbank choked with a glut of donations. The story of one elderly man’s fear of being lonely at Christmas drew sustained interest from the newspapers and television, which created the story: https://www.dailymail.co.uk/news/article-7784565/Pensioner-brought-tears-students-bring-Christmas-tree.html

Carols on the park drew a record crowd of about 500 people of all ages (John Leigh Park, Altrincham). We sang the well-known carols and heard the much loved stories and reflected on our good fortunes, and a wish for better lives for the less fortunate. As a step in the right direction a generous donation raised over £500 for local charities reaching out to the homeless and asylum seekers.

There is huge goodwill and humanity to be found and seen in our everyday and family lives. How to give this a satisfactory and productive harness?

The death of Martin Peters brought dementia securely into the limelight. There had been notes about his condition in recent years: https://www.independent.co.uk/sport/football/news-and-comment/sir-geoff-hurst-martin-peters-1966-england-world-cup-no-longer-remember-a7978486.html

The puzzling rash of dementia amongst famous footballers had become an irresistible story https://www.telegraph.co.uk/football/2016/12/30/11-football-greats-have-suffered-dementia/

At least three of the England World Cup winning team of 1966 are known to have developed dementia: Peters, Stiles and Wilson.

Epidemiological research seems to have settled the matter: https://www.bbc.co.uk/sport/football/50124102

www.nejm.org/doi/pdf/10.1056/NEJMoa1908483

But the Scottish study raises new puzzles. The increase in incidence of neurodegenerative disease in former professional footballers is not limited to dementia but also includes motor neurone disease and Parkinson’s disease. So whatever is going on in the lives of professional footballers, its effects are not limited to dementia. The increases are evident for goalkeepers, just as for outfield players. This suggest it less likely that heading the ball is the operative factor, which has been a persistent thesis over a number of years. The incidence of dementia in the cohort study, followed for a median of 18 years, was 1.5% – leaving 98.5% unaffected up the time of follow up. Deaths from all causes, including heart disease and respiratory diseases were less than seen in the age matched general population, so this is not an effect via failing general health.

We learn something new – But learn something more which demands understanding. Do we know what to do now?

Black Country Day

By David Jolley

It did not start well – with the 7.51 from Altrincham cancelled ‘because of shortage of train drivers’! So a cold wait, a missed connection and another chilly wait for the Bristol train from Stockport – which would get me to Wolverhampton too late for the originally planned journey to Smethwick Rolfe Street.

Then things took a turn for the better. My taxi driver from Wolverhampton was a Black Country Asian – well equipped with a local accent, living in Walsall, working in Wolverhampton and supporting Liverpool FC. We drove through South West Wolverhampton, Bilston and out into realms of the Black Country which are beyond my previous comfort range.

The Brasshouse Community Centre is flat roofed, much glass and plenty of space and essential facilities. The assembly was predominantly female, youngish to middle age with a scattering of older people, various races – all cheerful and positive, pleased with what they are doing and glad to be doing it together.

I was honoured to present certificates of achievements to those who had completed accredited training of the Open College. Warm and genuine congratulations and appreciation from everyone to everyone, and special thanks to trainers. We heard how the training and the process, funded by a Lottery Grant, had raise people’s confidence and self-esteem – and how this group is now reaching out to improve life for people with dementia and their carers in the community, in care homes and in hospitals.

Matter of fact – But WOW https://www.agewelluk.org.uk/

We had photographs. I had a cake with candles. It was a celebration.

In the muddling about between times I met Cassandra Farren who was to speak about her book: ‘I have lost my mum’. A powerful and useful sharing of her experience of caring. https://cassandrafarren.com/ive-lost-my-mum/

And I met a young woman from the Public Health unit in Wolverhampton. She says they are concerned that enough is not being done to understand the needs, and provide services for people from minority groups when they develop dementia. I hope we can be of help to her and her colleagues. Sadly she was unaware of the work we did in Wolverhampton in the 1990s and early 2000s – Proving that you have to keep working to maintain any progress you think you may have made.

Then there was Football Memories. Presented by a Brilliant Black Country Bloke. Tallish, bald and wiry – Black Country through and through. He demonstrated wit and knowledge, kindness, compassion and toughness. He is a leader in the memory club of West Bromwich Albion – the ground is just up the road form the Community Centre. His interest in local history is honed by involvement at the Black Country Museum, which is also nearby.

The stories he shared encouraged us to know that even dour men who are resistant to attempts to involve them, can be reached. Bill Shankly, former manager of Liverpool FC suggested the football was more serious than religion. Certainly there are many men, and some women, whose devotion to a club is immense, intense and as spiritual as anything we encounter in modern life.

There are similar memory clubs being developed and run by a number of the major and less well-known clubs. A great network.

https://www.bbc.co.uk/sport/av/football/43351623

https://www.wolves.co.uk/foundation/programmes-projects/health/molineux-memories/#

Altrincham FC, Sporting Memories Group

This was something which was to be helpful the very next day at a meeting of Dementia Conversations at Bowdon Vale.

We also learned a new version of the alphabet and stories of Ayli and Aynuk. The West Brom incarnations seemed to be smart in comparison with the Wolverhampton versions that I have known – earnestly and unashamedly dumb.

I did get to walk the platform of Smethwick Rolfe Street station on my way home.

A perfect day.

A date in the Black Country

By David Jolley

I have the invitation to a celebration of the work of Agewell and Dementia Pathfinders on Monday next. www.agewelluk.org.uk/

There will be presentations of certificates, updates on what the projects are doing in the Midlands and a keynote lecture by Cassandra Farren, author of ‘I’ve lost my mum’. https://cassandrafarren.com/ive-lost-my-mum/

What might have been a trial – travelling in adverse weather, aiming for Birmingham New Street and then asking a taxi to take me somewhere beyond, has been transformed by a quiet consultation of the A-Z Birmingham and National Rail Enquiries. This showed me that Smethwick is between Wolverhampton and Birmingham. Brasshouse Community Centre is near Smethwick Rolfe Street station and I can travel to Smethwick Rolfe Street via Wolverhampton, no need to go to Birmingham. No trial at all – A lovely adventure with chance to linger on Wolverhampton station for a few minutes on the way there and back.

There is such comfort and confidence to find when moving in areas that you know and have known through the years. There will be nattering with a Black Country accent and understanding if any of us find it difficult to follow what is going on and what to do next.

This will be a local event, but with wider implications. Our initiatives at Christians on Ageing include a weekly review of topics which have been in the media (papers) this week. The important thing is to identify stories and commentaries which relate to real people and real and enduring messages or questions. This means looking through the haze of urgent politics which are here today and probably gone tomorrow. Speaking Out