Look for a silver lining

By David Jolley

This week has given us sunshine and no rain – Though this feels likely to change as this evening is cold with a north wind and a grey sky.

It has also given us time – time with our immediate family and neighbours – the latter at several arms lengths. Time for the present, but also time for days which have passed.

It is time to rescue the garden and parts of the park and a nearby greenspace we look after. There is no one else to do it. Work on this can surely count as exercise for the day – and for the health of body and mind. It also seems to me the best offering I can make to the effort to keep people well and cheerful – I would rather do this than be one of the army of volunteers now enlisting to support the NHS directly – There are different ways that we can contribute. Attention now will hopefully bring reward with a tidy park, healthy shrubs and trees and blossoming flowers – The wild flower strips have been uplifting these past two years – Let’s do it again.

Sadly the programme of events – a teddy bears’ picnic, Big Lunch, Dogs’ Delight, Jamming on the Park – all look likely to be lost. We have already lost the Easter Bonnet Parade – when I have usually worn an Easter hat – and lately led the parade with a drum borrowed from the BB. You cannot really have an Easter parade at any other time.

The stimulus of assessments by the Green Flag judges has been postponed – probably to next year I would think – Ditto the less austere review by the RHS/North West in Bloom – These standard setting events will not be here, but we will want to have things as good as ever. That is why we do it.

So the horticulture and attention to the aviary keep us grounded in the needs of nature and the seasons, though it is not so easy to be sure what day it is without our Monday health walks, Thursday pop-in café, Friday seminars and Sunday services. The absence of external diary cues leaves us to discipline ourselves to make good use of the time.

One hour a day is set to be used to sort out the papers and books which carry memories – but memories which have hardly been retrievable – distributed in my volcano version of filing. This is fine for the things which you need day by day and are kept within arm’s reach – but once things drift into the outer reaches – and year follows years without actual contact and usage – Well the detail of the memory fades with a promise that: ‘I will visit when the time allows’.

Now is that time.

Much that is clutter and never should have been kept, is on its way out. Other material which is wonderful but will not be used again by me or anyone else, is also going – with less gladness. Two ‘lost’ photograph albums and associated items of family history are here and being hugged. They define us – we are very glad.

So – we will look for the silver lining in this threatening, thought-provoking time.

People with dementia and the international coronavirus crisis

By David Jolley

This has been a week dominated by Covid-19. There will be many more.

We have heard the numbers and the stories from China, Italy, Iran and elsewhere, but now the reality is being lived within the UK – Daily presentations by the Prime Ministry, flanked by grim-faced experts remind us of the daily evening communications during the Falklands war. The metaphor of war is being used liberally.

In the face of any infectious epidemic people with weakened immunity will be more at risk of contracting the disease and more at risk of experiencing the most adverse effects – so it is that world-wide most deaths are concentrated amongst older people with multiple morbidities. Amongst these, dementia is a standout vulnerability factor. People known to have dementia living in the community, living in care homes, or having been admitted to a general hospital bed, are at greatest risk.

The situation has brought an urgency to the realisation that general hospital beds are a precious resource for people of all ages who have acute need for medical care. Beds occupied because an individual could not be helped to cope at home, or has not been discharged for want of community care or a suitable care home – represent obvious inefficiency within a system even more severely stressed because of this virus epidemic.

Money is now to be found to fix this: ‘£2.9bn to free up hospital beds, but “suitable support” is needed’ https://www.homecare.co.uk/news/article.cfm/id/1623053/Coronavirus-and-social-care-gets-almost-3-billion-to-free-up-15000-hospital-beds

Printing money may be possible. Mobilising competent and appropriate support to a timescale likely to be relevant to the epidemic is a greater challenge – It may prove to be impossible – But perhaps a revision of the balance of resourcing will be useful in the longer term.

There is experience of the diseases and its impact on the community of people with dementia from the countries first hit. Alzheimer’s disease international has produced a lecture/statement from Professor Huali Wang of China www.youtube.com/watch?v=zM6cd1QSSFo

This is an impressive and sober communications. It is short on stories from individuals, but perhaps that is as well – The overall message is horrific enough. What we hear is the sober and systematic application of well-informed good practice, immediately identifiable as what we will do here.

Within the scramble to be kind and caring to the vulnerable, prejudices and stigma reveal themselves – Not over 70s are alike – some are vulnerable – usually because of coexisting pathology – including dementia. Others are fit, able and have been and will continue to be carers of others and activists for good. The Centre of Ageing Better has recently released a report which addresses such matters “Doddery but dear? – Examining age-related stereotypes”, go to www.ageing-better.org.uk/publications/doddery-dear-examining-age-related-stereotypes

 

Stories

I am not one for stories for stories’ sake. Others may find time and enthusiasm for the fantasy worlds of imagined times and places and people, but mostly I prefer the real world.

I can do with Fairy Stories – short and with a message – usually couched for children, read or recited by mum or dad or grandma/grandad, and with a history of telling which goes back many generations. MostFairy Stories feature a battle against danger for one or more young person. If old people feature it is as a sinister evil, bearing a poisoned apple, or leading the innocent to a place of hazard or imprisonment. In most versions used today the young people will triumph, danger and foes will be vanquished. My daughter, who knows about these things, tells me that in their originals, the tales did not always end in this ‘happiness in the ever after’. Which reminds me of one of the few books which brings together Fairy Tales which feature older people as heroes: ‘In the ever-after’ by Allan Chinen. This is a topic which might repay a revisit.

We are used to conversations with friends, family and strangers. Our regular monthly meetings at Bowdon Vale and The Isle of Wight use the title ’Dementia Conversations’ and use the powers of shared narrative to learn from each other and obtain support in the process. This month we opened the meeting further by inviting anyone from the village or elsewhere to join us for a ‘Time for a Cuppa’ event – an open café for a couple of hours, raising awareness, raising funds for Admiral Nurses and widening the experience of this time and space for people to share their thoughts, memories and experiences. We met people for the first time. We heard stories from people we have known in other contexts, but did not know of the dementia-related diversions to their lives which they have hugged quietly.

Elsewhere I was involved in a study day where one main theme was stories and storytelling. In an exercise I heard of reconnection with a former mother in law. She rang in the night, looking for a conversation. She had forgotten that divorce had led to formal distancing and loss of contact for more than twenty years. The love had not been forgotten or lost, and wonderfully the phone number was still the same. The reconnection lasted meaningful and mutually helpful – The demons of age and dementia worked for good. Happy in the ever after.

Foot and mouth?

By David Jolley

High profile advocates for people with dementia and their families are having a difficult time. The heat of scandal associated with complaints about management practices within the Alzheimer’s Society has barely cooled – Now we have Professor June Andrews OBE (for services to people with dementia) FRCN, being pilloried for her comments to a Public Audit Committee of the Scottish Parliament.

https://www.thenational.scot/news/18287804.age-scotland-hits-former-top-nurses-barbaric-coronavirus-comments/

https://www.telegraph.co.uk/politics/2020/03/06/former-scottish-government-official-faces-backlash-arguing-coronavirus/

Video: June Andrews claims coronavirus pandemic would be ‘useful’ for NHS | Daily Mail Online

June Andrews followed Mary Marshall to the Chair of Dementia Studies within the Dementia Services Development Service at Stirling University. They are both redoubtable women and have personally and through the DSDC done a great deal to improve understanding and practice in the care of people with dementia, many of whom are old.

So what was she doing, saying that the coronavirus might be seen as a blessing by NHS Hospitals if it kills older people who are in hospital, thereby freeing beds for other (more deserving) people?

Watching the video – and staying with it beyond the fateful faux-pas – we can see that she was trying to make a point: There are people admitted to general hospitals and required to stay there inappropriately, because our systems are not well set for the needs of the population. We really need to do something about this, to achieve better use of finance and other resources, and for the benefit of people in need – including people with dementia – old and not so old:

’Here’s another nice mess you’ve gotten me into’.

It would be a counsel of despair which decided to ease the flow in the system by culling the most vulnerable – just the people the service exists to serve – But June Andrews knows that such thoughts are sometimes not far below the surface of frustrated, misaligned professionals.

We need a redesign with more space and flexibility in the system. No Draconian act of God will provide this. It may be that June Andrews, in opening her mouth unguardedly, has put her foot in it. But let us thank her for putting her finger on a subject which needs a cool appraisal of how we got here, and how we can make progress without too much more suffering through ignorance and pig-headedness.

Smoke and fire

By David Jolley

It is usually good to find ‘Alzheimer’s’ on the front page of the newspaper – It does not happen often – and perhaps most of the hot headlines prove to be red herrings. Today’s ‘Alzheimer’s charity ‘gave £750,000 in NDA Payoffs’ does not set the pulse racing: Alzheimer’s Society ‘paid out £750,000’ to staff amid bullying claims

The story is based on the witness of a whistle-blower, substantiated by comments from others who have worked for the society recently. It reports on an organisation where senior staff have been seen to be insensitive to alternative points of view, bullying and vindictive – and paying substantial sums to disgruntled staff who have left the organisation in return to their signing Non-Disclosure-Agreements (gagging Clauses).

It would seem that the senior staff concerned have all moved on from the Society to well-paid and responsible positions with other charities. This is not reassuring.

The Society has grown impressively since its modest beginnings in 1979. It has become a large company with a turnover of over £100 million pounds per annum. With its help dementia and Alzheimer’s disease have become well recognised and are now greatly feared, especially by older people – hence the massive donations to sponsor research and information activities. In addition the Society has become a major player in the delivery of community services.

Latterly the Society became centrally driven – HQ determining policy and rolling out plans to be effected in localities. All funds go to HQ to be distributed according to their priorities. Power and influence and finance are located there.

Some of us have been uncomfortable with this model from the time that it was inflicted on the Society

It may well be that things are not so bad as headlines imply – Let us hope so. Whatever the outcome, perhaps this will be a time to look again at the way the society is organised. Even the change of name – from ‘The Alzheimer’s Disease Society’ to ‘The Alzheimer’s Society’ seemed wrong. We are not about Dr Alzheimer but about dementia and similar conditions. Let’s make that much clear. A return to local groups and branches with their own elected officers and a budget determined by their local fundraising will be welcomed and allows scrutiny close to home. The Wolverhampton Branch of the 1990s was determinedly against providing services itself – it was proud to run regular support and information activities for carers and other interested people, and chivvied the powers that be to provide what they should be providing. Such a model is probably corruption-proof.

Turning a difficulty into a positive is always good for the soul.

Least amongst equals

By David Jolley

Articles in the British Medical Journal this week share a theme of the unequable treatment of people from ethnic minority groups by medicine, in medicine and the wider world of the UK.

Laia Becares and James Nazroo point to a failure of research studies to include sufficient samples of older people from minority groups: https://www.bmj.com/content/bmj/368/bmj.m212.full.pdf

The self-reported Health Survey for England 2004 found that estimates of poor health amongst 61-70 year olds was twice as common (and more) amongst people from Bangladesh, Pakistan, India or the Caribbean in comparison to white English people of the same age. That was 34% for white English, 86% for Bangladeshi, 69% of Pakistani, 63% for Indian and 67% for black Caribbean.

They suggest that these difference come from lifetimes of disadvantage and deprivation, low paid and low skilled work, institutional and inter personal racism and discrimination.

They find that the three UK national longitudinal birth cohort studies: The National Survey of Health and Development, The National Child Development Study and The 1970 British Cohort Study – all failed to include enough people from the minority groups to allow meaningful analysis of what happens and what might be done to improve matters.

These are salient reminders that when people are different – by age, class, gender, ethnicity, belief, education, language, accent or locality, we do not do well by them.

We do need the reminders. I would like to think that things have improved since 2004 – Could we find out?

It is not clear that the All Party Parliamentary Group for Longevity will give us answers.

But we will study it!

https://indd.adobe.com/view/85a7129f-f900-41fa-9a9d-024d13f0aaf5

Teamwork?

By David Jolley

Colleagues at the Social Policy Research Unit at The University of York invited me to a workshop – part of their HOPES project which seeks to learn about best practice in supporting older people who need help but are difficult to engage.

Getting there: right time, right place. All information provided by email in good time. Travel by rail – flawless booking at the railway station – extraordinarily inexpensive with a senior citizen’s rail card. First train – Northern Rail – heavily criticised and about to be nationalised. All seats taken but train on time – to Manchester Piccadilly and onto a Trans-Pennine train to York. Booked seat – which I found – but there was a problem in that the plan was for four carriages – and there were only three on the day. People with seats booked in coach D were disappointed and had to find space in A, B or C – along with others who had not arranged a booked seat.

So the beginning of a story or parable of getting things done when success, or simply coping, depends on links across different organisations, all with their ambitions but also constraints and limitations.

I found myself sitting across a table from a young man and younger woman who work together for a company. They were Coach D people – irritated that their foresight had not been rewarded by certainty – but glad enough to have somewhere to sit together. Both had laptops open throughout the journey and worked on them without breaks, though they did talk. The talk was office, and office related gossip and socialising. For the first half of the journey the talk was intense, earnest and personal. Meetings, plans, relationships, costs, dress, pleasure, frustrations: a whole world of what is important – in a world of meetings about stuff and interpersonal attitudes rather than anything practical. He made occasional references to home life. I reflect on a world of offices and meetings and laptops – and in all this people struggling to be themselves.

York station to the university – Taxi – Asian Taxi driver with what I learn is a York accent. He knows the way faultlessly, we see glimpses of the wonderful buildings of the city, smile at the prospect of the House of Lords moving here – But learn of his political view that the House of Lords, as currently constituted, should be replaced. Now finding your way in the maze of grey, flat-roofed buildings which is the University of York was difficult even for this experienced guide. We found a notice with words similar to the title of our desired endpoint. We were helped by a lady who took us part way and pointed to another block – ‘Just go round the end of the building and you will find a door..’ It was not quite that simple, but we got there to a warm welcome.

The workshop included about 30 professionals – researchers and staff of several multidisciplinary teams based in Yorkshire or Lancashire/Cheshire. All lovely people and dedicated to their work in supporting older people who have problems in coping at home. It was impressive and heart-warming to hear them discuss and analyse their approaches to situations which are challenging – Salt of the earth, making best use of experience and flexible resourcefulness to create individual models of care for individuals in need. Disbelief that they are often constrained by management (government) directives that each contact should be limited to a series over six weeks before discharge. For some people it takes six weeks to establish any contact, a basis of trust and the possibility of progress. Mostly they would find a way around this.

Return was with another taxi driver – but he and my first driver are long-term (from school days) friends and had been talking about us. This was more than a job to them. ‘I talk with him more than I talk with my wife’.

Trains back were a bit of a muddle – opting in the end to use tram from Manchester – A good illustration that there are more ways than one to get there.

Lessons from the day: People are making things work despite the fragmented structures they work in. We might do better, but we couldn’t have better people.