All in a day

By David Jolley

The webinar to India and beyond on Saturday was every bit as fascinating and moving as it could be. It was good to be reacquainted with colleagues still working in Wolverhampton – who told me they are looking after patients who remember me calling on them in our domiciliary clinics. Good times and a feeling of ‘family’.

Something like 400 people ‘attending’ and speakers from Japan, the UK and India. This was about health and loss of health amongst older people across the physical-mental health spectrum – with dementia featuring large.

India has a very big population – 1,380 million total, with 60 million aged 65+, near to the whole population of the UK. There may be 4 million people with dementia in India, while the UK is approaching one million. So, the numbers are there but for India it is matters relating to conception, childbirth, early years and youth, which are the main focus of healthcare planning and services. This is right and proper, so it is impressive that they and other middle-income and low-income countries are already taking such interest in the health and illnesses of older people, and especially the phenomenon of dementia.

By the1960s, the UK and other European counties had a large proportion of the population surviving into later life – about 15% being 65+ – and dementia had begun to swamp families and services. It was there, it had been known about as a phenomenon affecting older people, but there had been little interest or effort made to gain an understanding of its nature, causation or possible best treatment. The numbers and personal and societal costs made it an imperative.

Middle- and low-income countries now face similar challenges but with the benefit of what has been learned in 60 years.

I have been greatly impressed by a series of articles from Professors Steve Iliffe and Jill Manthorpe, which reflected on what has been learned. Their conclusion is that we know much more about risk factors, which increase the incidence of dementia – many of which can be reduced by appropriate actions by individuals and governments. Once dementia develops in individuals we have learned how to help them to live well despite the limitations which it produces – a safe place with informed and supported carers, continued involvement in activities, social, arts of all sorts – and maintained physical health through exercise and treatment as necessary. Only the cholinesterases and memantine have (small) beneficial effects on the dementia process. Despite vast expenditure on research no other medication has proved useful.

So this is what we said: where there was no hope, there is now much knowledge of at least twelve risk factors, which can be modified and could reduce the incidence of dementia, especially in middle and low-income countries by of the order of 40%. When dementia comes to individuals, approaches to tertiary prevention (reducing unnecessary complications, additional symptoms, suffering and costs) are understood and are effective.

It is a modest, honest worldwide story.

Some references:

Iliffe S and Manthorpe J (2017) Dementia: Is the biopsychosocial model vindicated? https://bjgp.org/content/67/661/344

Livingston et al (2020) Dementia prevention, intervention and care: 2020 report of the Lancet Commission https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)30367-6/fulltext

Journal of Geriatric Care and Research https://independent.academia.edu/jgcr

A smaller world

By David Jolley

My contacts from Wolverhampton keep me in touch with GeriCaRe, the brainchild of Dr Nilamadham Kar, who still works in Wolverhampton but has an international profile.

We wrote a book about dementia for India and he edits The Journal of Geriatric Care and Research.

This coming weekend he has involved me in an international webinar. This will use Zoom or something similar to reach people in India and other parts of the world. Like everyone else I will be sitting comfortably in my office. This is amazing.

The topics too are interesting and reveal the depth and breadth of interest which the health of older people is now receiving worldwide.

Promotion of a dementia-friendly community and extension of healthy life expectancy in Japan by Dr Yohko Maki.

Ageing joints by Mr Gopala Pemmaraju of Wolverhampton.

Prevention is better than cure in Type 2 Diabetes by Dr Biswa Mishra of Oldham.

Preventing late life depression and suicide by Professor Palanimuthu Sivakumar in India.

Knowing the self to prepare us to age in Happiness, by Professor Saamdu Chetri also from India.

And I am to speak to ‘Approaches to reduce the incidence of cognitive decline and dementia’.

It promises to be an enlightening and enjoyable event. It coincides with the very recent publication in the Lancet, which has reviewed 12 factors, which contribute to the genesis of dementia. Countering these, the authors say, might reduce incidence by 40% – the potential is greatest in middle income and low income countries. So, our webinar to India is especially well aimed. https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(20)30367-6/fulltext

Much room to be grateful for the advances we are seeing in understanding and services. I guess there will be comment too on the impact of Covid-19 on life in India and elsewhere and prospects for life hereafter.

Talking of trees

By David Jolley

It is funny how messages come together and you know you are being told something.

During the week we received a note in tremulous handwriting from Gill. We did not know here but she wrote: ’I have derived so much pleasure and comfort recently wandering around the park. It is a lovely place with something for everyone from little tots stamping in puddles, athletic types and old grannies. I enjoy the lovely old trees, especially the great oak and spring flowers’.

How marvellous.

Michelle Howarth and others have reviewed the literature which confirms the benefits of gardens and gardening for health and wellbeing: https://bmjopen.bmj.com/content/10/7/e036923

Just being there in the open air, seeing and hearing and smelling and feeling what is all around invigorates body and soul. Engaging with the soil and plants to tidy or plant or prune, stirs up a special personal dialogue.

Sarah came back from a walk, beaming with pleasure at the sound of trees in the gentle breeze of the early afternoon. Differing sounds according to the tree.

And a friend has sent a link to a wonderfully instructive and peaceful programme on the susurration of trees: The Susurrations of Trees – BBC Sounds

There is powerful interest in the benefits of involvement in nature. This is given additional energy by the learning which has come from the deprivations of lockdown.

A lesson not too late for the learning – and it applies most surely to the frail and vulnerable.

Black History

By David Jolley

Running through the week has been The Guardian’s excellent Black History Time Line – presented as wall charts and interactive on line: Black History timeline

It is a free and timely publication and an unusual but engaging reminiscence aide.

Most of us will not be familiar with Septimius Severus, an African born Roman Emperor. But we know of St Augustine and, from the first sheet, Martin Luther King stands out. The thrill of his ‘I have a dream’ speech when I was in my early twenties still rings loud and true. I remember the room where I first heard it and the people who were gathered there. Maybe I was more thrilled than most.

Othello.

And on the second sheet is Windrush: the iconic Empire Windrush. What I did not know is that Enoch Powell led the recruitment drive to bring nurses from the Caribbean to become nurses for the National Health Service. The service and other care agencies have remained dependent upon their support. They, in turn, have deserved better recognition and treatment than they have received and continue to receive. Enoch Powell, MP for my beloved home-town of Wolverhampton, went on to deliver his infamous ‘Rivers of Blood’ speech. Incongruous when you know his role in encouraging immigration by the very people he was then to vilify.

Viv Anderson – footballer. Moira Stuart – news presenter. John Sentamu, who famously came to his inauguration as Archbishop of Birmingham on the tram.

Barack Obama, Jesse Owens, Nelson Mandela, Muhammed Ali, Idi Amin, and Desmond Tutu. Notting Hill, Paul Robeson, Roots.

All these people and events are hung with meaning and feelings which come back to life by just their mention. Not arranged neatly in a timeline for me – but each standing alone, powerful, unforgotten and unforgettable – indelible. For everyone there is a story to be told.

A good gift for these times.

 

God is at work?

By David Jolley

We have a reflection from a Baptist minister, which takes a positive view of the effects of the COVID-19 Pandemic – citing evidence in three themes: a sense of community has been restored (increased neighbourliness, clapping on Thursdays and on other occasions), increased attendance at (virtual) faith events, and ‘maturing of faith’ – as in the testing of steel by harsh and threatening times.

We are grateful for the thinking, but I would take issue with the interpretation and even the observations.

There feels to be much more of the Devil in this. The vulnerability of humanity and the planet etched deep in the restructuring of how we have become since the blessed years, which followed the two great World Wars. Lessons were learned and good visions brought, through sacrifice, to reality. But latterly greed and self-interest have put all that aside.

This week Boris Johnson guaranteed Care Homes and Care workers front page attention because of his bumbled address in Goole. I think he set out to say we have learned that we must improve care services, which is true. But his words betrayed this and he appeared to blame Care Homes and their staff for causing unnecessary deaths amongst residents. Care Homes and care home staff are innocent victims.https://www.theguardian.com/society/2020/jul/06/anger-after-johnson-appears-to-blame-care-homes-for-their-high-death-toll

I thought I knew something about care and the lives of the people who work professionally to provide care – in care homes and the community. But I am shocked and ashamed to read a powerful and upsetting review by Aditya Chakrabortthy, which exposes the conditions under which care staff work. Care workers with coronavirus face an awful choice: live in poverty or risk killing your patient | Aditya Chakrabortty

I knew their pay to be poor – comparing badly with those who stack shelves or mount the tills at supermarkets – but I have not understood that so many are employed on ‘Zero Hours’ – no job security, no sick pay. So poor people, providing essential, skilled and sensitive care have been faced with the dilemma of going to work when unwell – risking infection of the people they care for, or not going to work – thereby committing themselves and their families to penury and starvation.

Somehow, we have to get hold of this and rid our society of the grasp of greed.

Can this come from meetings of the faith communities?

Will it come from informal neighbourliness?

Have we the maturity to get a grip and reverse the direction of drift that has so eroded our communal strengths?

Whichever is your God – this can only be done if human beings are listening and become prepared to come out of their comfort zones of compliance and take action.

 

Memory runs deep

By David Jolley

It is interesting to read that a study from the University of Highlands and Islands has raised fears that Scots Gaelic is being lost. https://www.dailymail.co.uk/news/article-8482581/Scots-Gaelic-risk-dying-decade-11-000-speakers-left-study-reveals.html

We read that the language is currently used regularly by only 11,000 people – most of whom are old and live in the Western Isles. Even there less than half the population speak Gaelic. Road signs and notices in public places do offer a Gaelic version alongside English but this is mere tokenism. People in high office are urging efforts to preserve and celebrate the language and encourage its use by people of all ages.

Set against this a study from Cardiff has found evidence from fossils, poetry and place names to assert that Golden Eagles and White Tailed Eagles, now extinct in Wales, flew across the whole of Wales in the past. https://www.theguardian.com/environment/2020/jun/30/golden-eagle-white-tailed-once-widespread-across-wales

These are other worlds but remind us that even when memory seems to have been lost, there are clues deep down if only you know how to find them. We know the power of music and song to reach places when ordinary communication is failing, and it takes me back to the revelation that a former youth leader, more than a decade now into advanced dementia could still recite to celebrate Wordsworth’s 250 anniversary. http://www.wordsworth250.com/gallery-9.html#ewpopup/2/

Still grieving the loss of Barbara Pointon, her description of finding contact with the real Malcolm as layers of inhibition were stripped away by progress of his dementia, tell the story so well. https://www.emerald.com/insight/content/doi/10.1108/14717791111144678/full/pdf?casa_token=U2AYbL63uPEAAAAA:NVRS_1mPs_kct9zJNFh-ph5KQhGk9LBdzYPjbEh8hADUaQY08yeYcYJ0cCOVdt1_-QRS8uKXF5KCzr7TkTVNx3AePrqNLE5dyC4utrLlyS6-P4nYLRI

 

 

Barbara Pointon MBE

By David Jolley

We have learned of Barbara Pointon’s death https://www.alzheimers.org.uk/news/2020-06-23/tireless-dementia-campaigner-barbara-pointon-has-died

The message from the Alzheimer’s Society says that she lived the last two years of her life with dementia. She had lived with dementia for many, many years – famously as carer of her husband Malcolm – they decided early on to share their experience with the media and the world. In doing so they did so much for the cause – raising awareness of the disease – and publicising poor practice and good practice in services Malcolm and Barbara

After Malcolm’s death, 17 years from the start of his illness, Barbara continued to campaign as a champion for people with dementia and their families. She was a formidable, fearless woman. An example was her determination to help Malcom to continue to eat and drink despite medical advice that he should have a gastrostomy – he lived on for ten years beyond that advice – Barbara taking the time needed for him to cope with normal nutrition. In this and in many other aspects of care, she taught us professionals how things can be done with time, dedication, love and ingenuity. She fought the authorities to ensure that NHS Continuing Health Care could be paid to allow adequate care of Malcolm at home after a period in a care home.

Her closeness to Malcolm increased through the years with dementia – she would say that rather than his spirituality being eroded by the disease, she found it more possible to be in contact with the essence that was him. She sketched an onion-layered schema of the self – the outer defensive layers being stripped away by dementia, to expose the depths for communication. This analysis is a powerful reassurance to carers and families.

A hugely talented person herself, she was studiedly modest and always willing to give generously of her time. Professor Dawn Brooker kindly invited Barbara to a special lecture in Worcester. We were treated to a warm and gently inspiring experience which will not be forgotten.

We are losing too many heroes these recent weeks.

 

 

A time that never was?

By David Jolley

Our first Desert Island Discs at Dementia Conversations Bowdon Vale featured ‘The White Cliffs of Dover’ by Vera Lynn. The mood was set for the afternoon – dreamy memories of love, hope, determination against what seemed like impossible odds. A belief that was shared by ordinary people. A belief which prevailed.

Music is established as a most powerful resource in communicating with and by people affected by dementia – as in people who do not have dementia.

Vera Lynn was active and important through the war – and continued to be active and a reference point throughout her long life – still performing and cutting hits into her nineties. Her death and the dignified celebrations if her life, which have followed mark another punctuation to the flow of our lives associated with these extraordinary and stressful times of lockdown and excess deaths.

In her Guardian appreciation, Joan Bakewell reflects that the warm glow associated with these songs of hope are not true to the reality or generality of those times. There was much suffering, separation, anguish, deprivation, pain and losses by deaths. There were crooks who exploited the situation for their personal gain and to the detriment of others. There were indeed – but memories of the hopes and togetherness shared by many have lived on

Joan Bakewells ‘ We who are old mourn, in losing her, the vision she gave us of our younger, happier selves yearning for love and peace – as we still do.’ https://twnews.co.uk/gb-news/vera-lynn-s-soaring-voice-gave-britons-hope-when-hope-was-most-scarce-joan-bakewell is poetry and romance in itself and will move many, as it does me.

The metaphor of war does not feel appropriate to the international efforts being made to control COVID-19, nor to the encouragement of people to rally together in our efforts, which have been tinged with the notion of British exceptionalism. Yet the perceptions of people visiting or working in care homes most severely affected by the virus: ‘It was like going to war’ are raw and heartfelt and accurate https://www.theguardian.com/world/2020/jun/14/three-weeks-of-hell-the-peak-of-covid-19-at-hard-hit-uk-care-home-melbury-court

https://www.theguardian.com/world/2020/jun/16/more-than-16000-people-in-uk-care-homes-have-died-from-coronavirus

The loss of life in the UK has been great and the story is not finished yet 22 days in April: the darkest hours of the UK coronavirus crisis

There are wonderful things being done to support people and raise spirits during this crisis. None quite as evocative and enduring as Vera Lynn and her songs.

COVID-19 squeeze

By David Jolley

We are beginning to hear more of the consequences of reduced economic activity during the lockdown which has been designed to reduce the spread of the virus.

We hear that Local Authorities, already threadbare now talk of bankruptcy https://www.theguardian.com/society/2020/jun/11/covid-19-crisis-means-englands-local-authorities-could-go-bust-warn-mayors

There are increasing appeals for funds from charities to continue their work – for they find less people are affording donations: museums, schools, art centres are fearing closure for lack of revenue: https://www.theguardian.com/books/2020/jun/11/jane-austen-museum-under-threat-due-to-coronavirus

Some care homes and independent sector community care facilities are already precarious.

My old school, which I loved and was free to attend in the 1950s and 1960s for me, returned to its previous status as a fee-paying grammar school subsequently rather than be included in a comprehensive education model. This week I received a letter explaining that some families find they will struggle to find funds for next term. And there is the question of those few pupils who are supported by endowments.

This has made me think hard and long.

Encouragement comes from the news that the probation service is returning to public ownership: not because of COVID-19 but because its privatisation proved to be a disaster. Probation services to return to public control after Grayling disasters

Is it possible that the squeeze on finances consequent on the lockdown will allow a return to the model of services which I consider to have been a golden age? Some long-stay beds within health care, most residential care provided directly by the Local Authority, local staff proud of doing well for the community and each other, good integration between health and local authority staff, managers and elected members. Day hospital care and day care acting as a link between residential care and community support. Care at home provided directly by the Local Authority and NHS.

It worked. There was integration. There was trust. There was satisfaction. It had to be affordable.

Unthinkable of course. But we are in a situation where the unthinkable has its day.

Oh – and of course WGS would return to Direct Grant status – or maybe agree to be part of a comprehensive model.

 

 

Dancing with the daffodils

By David Jolley

A week of sustained high passion, but with the beginnings of consensus and with it a quieter resolve to take action. Polly Toynbee in the Guardian cites ‘the care home tragedy’ as a ‘stain on this government’: 22,000 excess deaths in care homes, NHS given priority, hospitals emptied into care homes – careless of the consequences. https://www.theguardian.com/commentisfree/2020/jun/01/care-home-dead-government-systematic-ageism-uk-covid-19

Her suggestion is that we move back towards integrated and nationalised care across the health-social care interface. More beds and all services free of means-testing.

News-night’s in depth study based on experience in a MHA setting, provided powerful – hopefully influential support Newsnight – 03/06/2020

There are informed and impassioned letters commenting on the genesis of the weakness of the care home sector. Conclusions very much in line with Polly Toynbee. https://www.theguardian.com/society/2020/jun/03/care-home-crisis-is-the-result-of-years-of-neglect

From my experience, the balance we had in the 1970s and early 1980s was good: almost all care homes being provided by the Local Authority (Part 3), staffed by local people who formed a proud group of respected, trained and supported women and men. The NHS provided long-stay beds for the most impaired and disturbed. These residential resources were linked to community services run by the NHS and Local Authority, and included Day Hospitals as well as Day Centres. Perhaps the financial impact of COVID-19 will lead to a return to this simple, effective, not-for-profit model.

Amongst the good news we read of a scheme whereby scout troops are becoming linked to care homes to offer a counter to isolation. https://www.theguardian.com/society/2020/jun/05/scout-troops-pair-up-with-care-homes-across-uk

But mostly this story from a care home shows that life in care with dementia can be sustaining and joyous. Barbara is 93 and has been in care for many years. I knew her as a youth club leader and school teacher in the 1950s and 1960s. Here she delivers a poem in celebration of Wordsworth’s 250 anniversary. http://www.wordsworth250.com/gallery-9.html#ewpopup/2/