Time together – our most recent Dementia Conversations

By David Jolley

Our monthly meetings continue and are valued. I sometimes feel uncomfortable about the ‘Dementia’ bit in the title- These are conversations, and it is concern to make time to reflect on the experience of living with dementia that brings us together – but somehow it feels self-conscious and potentially constraining and off-putting.

Exchanges in the group centred mostly on the roles and experiences of care in care homes or hospitals. For some it proves possible to continue care at home, and we are thankful for this blessing – It depended on the changes which come as dementia advances. Quiet, increasing dependency makes for tiring hard work but often this can be sustained, supported by family, friends and professionals. It is the presence of added symptoms (Behavioural and Psychological Symptoms of Dementia (BPSD)) which make it so much more difficult/impossible. We heard of a persistent need to walk, variable recognition, falls and injury. We heard of pleas to return to cohabitation, mixed with return to wartimes and the strong friendship and shared fears and glory of those times. We heard of failure to follow systems of good practice, turnover of staff, lack of communication and respect for family. We heard praise and wonderment at what staff do achieve in the light of difficult, changing, challenging behaviour and limited resources overall – and less-than-appropriate personal rewards.

Through all there is the sadness of losing a feeling of communication with someone you have known and loved for years. This too varies between individuals and over time. Music, memories and routines can bring people closer again.

We touched on loss of capacity, the Mental capacity Act and Mental Health Act – and on their implications for funding – Things which can be visited and revisited but may be difficult to hold onto.

Melt-in-the-mouth cakes, cherries and more gave us sustenance at refreshment time – Which gave more chance for informal reflections.

People always ask what is new in the dementia world – we looked at some of the topics in the news:

We found a respected report which says Brain health food supplements are a massive waste of money.

We found The House of Lords says social care should have urgent £8 billion cash boost.

Healthwatch England report that less than half of people with dementia are receiving regular reviews of their care packages in a year. Councils can hardly afford to provide accepted good practice.

So the 7% increase in the number of people receiving a diagnosis of dementia rings as a hollow victory: welcome to the world of recognised dementia: we are not able to provide the services you need and deserve.

Prisoners with dementia and other non-cancer terminal illnesses are less likely to be given early release than prisoners known to be dying of cancer.

Carers of people with dementia are amongst the loneliest of people.

Scotland, as so often, seems to be getting it right before the rest of the UK with its Fair Dementia Campaign. We thought we should write to our local MP and ask if something similar can be done in England. Perhaps others will do the same.

Time together – well spent.

Christians on Ageing – A new challenge and a conference:

On Wednesday of this past week I found myself with a clash of priorities – North West in Bloom judges visiting our park, and a meeting of Christians on Ageing in Sheffield. Out team of volunteers on the park were well equipped to cope with the judges – by all accounts, the judges enjoyed their time with us. It is good to have chance to show people what is being done.

In Sheffield I found myself agreeing to become Vice Chair of Christians on Ageing. This is a great honour and a considerable challenge. This organisation has the potential to do a great deal for the cause of older people, including those who experience mental health problems or dementia. It also has potential to do a lot for churches and other faith communities. Let us see what we can do.

First is to host a working conference in September – here is the message we want to share: We hope you will think of joining us.
Old people are in the news: we are used to being seen as a burden. Now we are caricatured as unreasonably wealthy, and pampered by the state to the detriment of younger people; benefits risk being withdrawn. In reality, older people are loved within their families and localities. They have much to offer, and they have much to think about – past, present and future. Christians on Ageing are bringing people together to consider such matters.

Professor David Jolley, a retired consultant psychiatrist and vice-chair of Christians on Ageing, will examine tensions between the younger generations and older people and how they might be resolved. Youth workers in churches are common, but workers appointed to support older people few and far between. Helen McCormack, a Ministry with Older People Development Worker for the Methodist and United Reformed churches in North Yorkshire, will discuss her work, which involves both supporting older people and exploring the opportunities which later life can bring. Majors Rita and Paul Conley of The Salvation Army will outline their experiences and views arising from many years’ work with older men in prison. Finally, long-time secretary of Christians on Ageing’s dementia network and retired Methodist minister The Reverend Dr Albert Jewell will reflect ‘How far do we really appreciate what it means to be someone living with dementia, and how does it feel to be a family carer in that situation? What can be done to help our churches become truly more dementia-friendly?’

But this conference is mainly about delegates – people who are old or interested in issues of ageing with a Christian faith within the context of churches in the UK today. So come and ask your questions! Come and share your ideas! We might find some answers.

Still living by faith, still seeking truth, still accepting challenge
25 September 2019
Sheffield: United Reformed Church, 60, Norfolk Street S1 2JB

10.00 Registration and refreshments.
10.30 Welcome and Introduction to the day – The world around us.
10.35 David Jolley, Honorary Reader, The University of Manchester; retired Consultant and Professor of Old Age Psychiatry.
Intergenerational Fairness & Provision: a reflection.
11.15 Break.
11.25 Helen McCormack, Ministry with Older People Development Worker in the Thirsk and Northallerton Methodist Circuit and Zion United Reformed Church, Northallerton.
Special Need or Special Contribution?
12.10 Information Exchange – An opportunity to share experience of being Church in the world.
12.45 Lunch.
1.30 Musical interlude – The world beside us.
2.00 Rita and Paul Conley, The Salvation Army – Older Prisoners: new ways of working.
2.40 Albert Jewell, former pastoral director and senior chaplain of Methodist Homes for the Aged (MHA).
People with dementia: a Christian response.
The world of Christians on Ageing.
3.20 All participants: Reviewing the day, planning our future.

To register – please see website: https://christiansonageing.org.uk/product/conference-2019/

Something about austerity

By David Jolley

Last Wednesday’s headline was: ‘funding crisis is putting tens of thousands at risk’. This followed the comments of the sober and highly respected Association of Directors of Adult Social Services (ADASS) on release of its annual survey.

Headline – but nothing new to most of us and certainly not surprising. The parlous state of funding for care services is in line with almost everything else which is required for a civilised society in this 21st century: police, prisons, the armed forces, education, healthcare, benefits, maintenance of roads and more.

There is need for investment for the safety and welfare of present generations and the future of able and disabled people in this country, not to mention our support of people who live in other countries which are less fortunate in their resources.
The reduction of services is attributed to austerity measures. Yet other figures tell a different story: many people are very well off. This is a rich country. Wealth is mal-distributed.

This summer the Personal Services Research Unit at Manchester University, where I am pleased to be associated, is undergoing change. Professor David Challis, who has led the unit with distinction and to multiple achievements since the 1990s, has retired. Now we are required to move to new accommodation: the fourth home for the unit since I joined 2006. We are moving to the Ellen Wilkinson Building.

This feels to be a right and appropriate association. Ellen Wilkinson was a northern suffragette and a significant figure in the Labour Government of the original Austerity Years 1945 – 51. ‘Red Ellen’ was small in stature but fearsome in her determination and strength to get things put right. Her work, and that of others of the time showed discipline and selflessness which, by means of some years of austerity, would sponsor a better world for people of all status, potential and need: education, welfare, health safety and security. This was a positive use of shared self-denial.

These were the lessons which she and others taught us.

There is so much more available to us now than there was 70 years ago – How frustrating that we appear to be unable, unwilling to use the advances cohesively and constructively The same issue of the newspaper told the story of research which suggests that abnormal variants of alpha-synuclein may travel along the Vagus nerve from the gut to the base of the brain, and there produce damage with is the basis of Parkinson’s disease. Now that is very interesting. There may be models which would find something similar to add to understanding of Alzheimer changes.

If we spend our money wisely, we can prosper to the advantage of everyone……

Continuity therapy

By David Jolley

I have spent time re reading and making notes on the House of Lords Report on Intergenerational Fairness – Preparation for the conference which Christians on Ageing is holding in September. It is extraordinary to take in how many serious offers of evidence they received from organisations with obvious vested interests and how many learned professors were prepared to give advice. There are a lot of professors about these days. I should know. There is much to be learned and more to be reflected on. One of the prize professorial quotes said something like:
‘I cannot think of anything which I knew 20 years ago, which is useful to me today’
For me it is that most of the currency of today will be forgotten tomorrow – at no cost. But the lessons learned over 70+ years are with me, stay with me and are as of gold.
Our holiday was at Llandudno – not a town I know well – Our family holidays from the 1940s onwards have been at Rhos (Llandrillo-yn-Rhos) – but close enough for the dogs and us. We walked the prom and wondered at the Great Orme to the west and the Little Orme to the east. We heard and saw the seagulls – huge and handsome, noisy and intrusive. We saw the layers of the littoral zone: rocks, pebbles, sand, seaweed and ripples, heard the sounds of it and smelled the smells. The gardens along the front have many different plants and shrubs to appreciate. They might be better kept, but it is a huge gift even in its present form. They are faced by a mile of perfectly painted cake-icing hotels, each named to evoke the scent of favourite people, places or stories. This is a place with connections to Lewis Carroll (Charles Dodgson) and there are huge, scary bronze-coloured carved statues of Alice, White rabbit, The Mad Hatter to tell that story and raise memories at corners here and there. (You can follow the trail with an App. We just came across them).
On Sunday evening it rained so that the concert of Hymns of Praise on the front was cancelled. Monday the weather was fine and so the town brass band could perform. Perform it did – quite gloriously: Men of Harlech – of course. A fusion of ‘Air on a G string’ with ‘A Whiter Shade of Pale’. The music punctuated by friendly information from the splendid proud and dedicated conductor. We heard the music, felt the breeze and loved the light – and then came a friend and his dad – out of the mingle of kindred romantics. A friend who has been busy with other things and in other places – but here we were, side by side and sharing all this, just as we have shared in other adventures. Such coincidence strengthens faith.
Another day we went up the Great Orme – by tram and in the company of Jim who must be a hundred years old, perhaps ticking off a project on his bucket list, and schools of children in high vis vets and minded by almost-run-ragged teachers. And on two days we went to Rhos, to walk the beaches, see the dogs run and bite the little breakers at the water’s edge. To visit Nino’s – only to find that he is no longer the proprietor – and cheese and onion pasties, mash and mushy peas are on the menu – but not available today!
It does you good to live in harmony with our past. It says there is a future which makes sense.

Presidential visit

By David Jolley

This week has seen The Reverend Michaela Youngson and Bala Gnanapragasam, President and Vice-President of the Methodist Conference, visiting the Manchester and Stockport District. In the world of Methodism these roles are equivalent to being the Archbishop of Canterbury, but only for a year. This rapid turnaround goes with the Methodist tradition of an itinerant ministry – the standard arrangement being that ministers are attached to one place for only five years in the first instance, though this can be extended in small multiples of four. It has the advantage of bringing fresh ideas and enthusiasm to the leadership roles, but perhaps leaves considerable power in the continuity provided by the executive.

The three days of the visit covered a range of topics and locations: creative writing, public health and faith, local government, migration, a walk in the Peak District, MHA Sunday, Methodist Women hope and a Pentecostal celebration. I was pleased and fascinated to be invited with my colleague The Reverend Ros Watson, to be part of the discussion of health and faith – a consequence of our Dementia Conversations at Bowdon Vale.

It was an assembly to savour and to learn from: Bala himself has been Chairman of a major Acute Hospital Trust for eight years and has contributed to improved knowledge and services for people with HIV.https://www.christianaid.org.uk/contact-us/people/bala-gnanapragasam.

A is a retired nurse who worked up from cadetship to be a lead nurse. In retirement she is involved in a number of projects reaching out to ill and disadvantaged people, including people with dementia.

B1 is a minister whose adult son lives now in supervised care with his autism – the experience of trying to live with this as a family has been more than a learning curve.

Our hosts were C and F: handsome and gracious members of the Black Church where we were meeting – A building which looked to have been a two-storey workshop – with the upper floor now used as a church and centre for foodbank and other community activities. They emphasised the potential for churches to become involved in research and to contribute to discovering more about health and how to improve people’s health. They shared the surprising information that 80 percent members of the Black Community are associated with a church, so that researchers looking for subjects to investigate ethnic linked disorders find work with Black Churches extremely rewarding. Faye has been working on aspects of cardiovascular disease which is high amongst the black communities. Their great advantage in working with and through churches, is that the people trust the church and church workers, whilst they often have reserve or suspicion about mainstream health authorities and their advice.

Interesting – for my understanding is that a much smaller proportion of the white UK population are involved with a church, so that investigations amongst church goers are likely to be skewed by their atypical characteristics. In addition, my understanding would have it that many people today are suspicious and reserved about churches and religion – much more likely to have faith and trust in mainstream health care – and mainstream healthcare as a whole maintains a distance from religion. A recent review we looked at, at one of our Friday seminars declared itself to be about whole person medicine, but mentions only physical and mental dimensions: no room for a social context let alone spirituality or faith https://www.rcpsych.ac.uk/improving-care/campaigning-for-better-mental-health-policy/college-reports/2019-college-reports/cr222 (we must come back to this).

B2 has worked as a chaplain in a general hospital which went through years of criticism but is now managing better. Despite the setting and reputation of the Trust he has found people grateful for the care they receive and particularly pleased with the opportunity to share thoughts and feelings which the chaplaincy offers. His work extends to the local hospice which enjoys the highest regard and confidence within the town.

C is a GP who practices in the Peak District but makes time every week to travel to Salford to contribute to training which will produce a qualification for immigrant/asylum doctors to practice medicine in this country: a massive gift to these individuals and a boost to our services.

Ian is the minister at Manchester Methodist Central Hall which hosts a range of initiatives which reach out and provide home for the inner city peoples – older people left behind, homeless people, people whose first language is not English and who want to worship together www.methodistcentralbuildings.org.uk/ . Julie is a fabulous trainee minister, now in middle age but radiating raw warmth which has already reignited communities. Her current placement means she is Ian’s apprentice.

Dr Andrew Lunn is the Chair of the Manchester and Stockport District  www.mandsmethodists.org.uk/ – pleased to be part of this celebratory three days (now there is something: 3 days to change the world) – and thoughtfully enthused by this health and faith mini-forum.

Ros and I spoke briefly about Dementia Conversations and I added a bit about Christians on Ageing – 35 years in action but unknown to all but three of this group. The conference which will be held in Sheffield on September 25th is an opportunity to reach more people and realise the potential https://christiansonageing.org.uk/.

Looking at themes we found consensus that churches can do a lot in health care – physical health, mental health, social life and spiritual life. Helping people to trust the mainstream and helping the mainstream to trust us and other communities of faith. For some the need is for education and health promotion, for others it is rescue from dreadful circumstances, for many – help with illnesses when they come and go – readjusting to life with less strengths and abilities sometimes, living with chronic or progressive disorders which may last until death which may come early. Dementia is perhaps the most prevalent of these latter – a model for caring and working toward adjustments. Communities of faith must be accepting of people who are different – by illness or by other attributes. ‘Dementia Friendly’ is one level toward progress. Conversations aim to go further.

This was a most encouraging and inspiring, frank meeting of thinking and active Christians. It will be good if the group stays together for a while to see what can be achieved.

People who lunch

By David Jolley

We began with what we called a ‘Biggish Lunch’ in 2014 – Joining in at short notice the national initiative of the Eden Project to encourage people of local communities to sit down one Sunday in June and get to know each other a little better. www.edenprojectcommunities.com/thebiglunchhomepage

It worked brilliantly, drawing people together and setting up a membership of Friends of John Leigh Park, which thrives and does a little more in the community around the park year on year. Friends of John Leigh Park

This year it rained a bit – and the forecast was for quite a lot of rain, so our numbers were down. That was disappointing, but in its way it brought the feeling of closeness even stronger. We had a great line up of things to interest lunchers: dance by a local dance-school – youngsters showing off the results of training week by week and interpreting modern music. Dance by the Bollin Morris – new for us but with a long history – Fabulous cloaks made traditional from strips of rag, flowing in the colours of blue and purple to simulate the flow of the River Bollin. Music from the violin, accordion and tambourine. Big black hats. Blued faces. Big sticks which are clattered in time. Oh how the dances can bounce in rhythm – and amongst the adults, smaller people – half their size – These are the Morris Minors! See how they dance – and we were invited to join in – instructed gently by these Minors – I couldn’t bounce – but the thrill of the music and the disciplined movement took hold well enough.

The powerful tones of the Cadishead Brass Band carried across the park and through the nearby roads and streets. Tunes which are there inside all of us – released and shared – The link between memory and emotion loosened in pleasure or sorrow. Nothing compares.

But later there were other tunes, with guitars and keyboard – bringing back the 1960’s, 70’s and more.

There were displays of woodcraft and baking and a Friendship Group which makes it easy for people to travel to places they have always wanted to – but have not dared – and can if they are in company.

There were cunning and hilarious games for smallish people – a relay through hoops and a tunnel and balls to take too and fro. No water this year! But fun that hugs in children and parents who have not known us before. Later we could decorate Ginger Bread People, and make a dream-catcher – Just like the BFG – made from twigs and strands of coloured wool. Magic.

There was a 5 a side footie squall – all endeavour and skills and determination. Triumph and cups and medals for eager and disciplined boys – Some of whom might sometimes stray to mischief – but this was straight – and just as joyful as joy can be.

We made teas and coffees and there were snacks and fruit and juice- Served by kindly ladies, including a local councillor and others with notable other lives. We didn’t do the gymnastics, and the slack rope walker did not show.

It rained a bit, but we did not mind. There were still ice-creams, and it was warm even if a little damp.

We were of all ages and from varied backgrounds. People talked of this and that and especially of other times like this with music and dances and games and picnics and sheltering from the rain.

It is old fashioned. It reaches memory and emotions in a painless therapy.

Walking together

By David Jolley

The week started with a group of local dementia activists joining us on our weekly health walk. They brought balloons. We had bubbles left over from a recent spring-clean in the toddlers play area of the park. These fragile, beautiful, coloured, floating ephemera welded our joys. Joy at the freedom to walk, togetherness in knowing and showing that sharing simple things has tremendous power for healing.

This was Dementia Action Week. The Guardian included a special enclosure fronted by Kevin Whately (Sergeant, later Inspector, Lewis). His article: ‘Conversation is so important’ tells of the support which he and others in his family gave to his mother during her years living with dementia. They were grateful for the contributions of neighbours and also had the unique facility of repeats of programmes featuring Kevin as Lewis. Every little helps – but this is quite a wonderful present for mum. His use of the word ‘conversation’ is so welcome. It is the title Barbara and Dementia Pathfinders gave to their initiative on the Isle of Wight and which we have adopted in Bowdon Vale. It works so well: Kevin Whately’s summary is ‘All it takes is a conversation to see we’re still us’.

Also within the supplement Neil Mapes of Dementia Adventure speaks to the benefits of time in the outdoors. Today’s paper recommends extra Vitamin D for everyone as current generations spend so much time indoors, locked to a computer of electronic game. We have reflected on the extreme indoors experienced by many residents of care homes who so rarely get as far as the garden. The same can be the case for people with dementia and older people with other frailties who are still at home – and almost always indoors. So our walk in the park struck the right chord. It is near to home. It is tailored to the strengths and weaknesses of those who come along. And there is tea and crumpets when we gather at the end and look forwards to next week.

There are other articles which float prospects for research into the basic biological characteristics and possible prevention or treatment of dementia, including an approach to modifying genes (led by Roger Bullock who I have known quite well). These may be fascinating, almost science fiction and powered by endless hope, but I remain happier to encourage the application of what we know. We know that the incidence of stroke and dementia is reduced when people live easier, better balanced lives. Some people take advantage of this. Others need modifications which only governments can control. We know that when dementia enters a life, it can be better lived with if we maintain conversations, make it possible for people to enjoy music, exercise and the fresh air in ways which are designed to be OK for them in their altered state.

ne more step along the road we go.