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  • 11th December 2017 | By David Jolley

    The first response to my card asking people who attend the Drop In at Bowdon Vale:

    ‘Will you write a list of any things you feel this church could do for the village please?’

    Is encouraging in that it has come quickly. It lists: sing along, table tennis, beetle drive, cards, dominoes, film show. These are all simply social activities which might expand from what we do at the Drop In.

    There is nothing about spiritual life. Perhaps this a consequence of inadequate wording in the question or the context in which it was given. I did not want to be directive. It may be that people were just assuming the religious and spiritual would be ‘understood’ – that is what churches do.

    Thursday’s Manchester Evening News includes an article p 28 about Audacious Church in Salford. https://audaciouschurch.com/ This but is new to me though we have looked at similar phenomena with origins amongst students of the university in Manchester. The MEN article tells of plans for ‘A cathedral’ to accommodate 2,400 in its auditorium. The current building provides three services each Sunday for a total of 5,000+ worshippers. This is clearly a different world and I wonder quite what it is about. The plans include dance, sound and TV studios, offices for staff and management, business units, a well-being centre offering counselling, debt advice, mental well-being classes, a children’s church, activity rooms and a gym. There will be space for indoor sports, a prayer chapel and a rooftop garden. Something like a Trafford Centre of faith.

    In Paul Smith’s first article in The Methodist Recorder October 20th, he addresses the question of how to grow: First has to be desire, then intention and the development of a vision which informs a strategy: ‘discovering the unique place we have to play in God’s purpose’.

    ‘In growing churches there is always a strong emphasis on spiritual nurture’

    ‘Vibrant public worship is indispensable’

    ‘Consistency of pulpit ministry is important’

    I am thinking on these things in the context of my own ill-ease about falling congregations in churches, and the poverty of services for people who are unwell including people with dementia and their families.

    Major cardiac surgery for children and young people living in Manchester will no longer be available in Manchester – The specialist centre here will close and Liverpool is our nearest centre.

    My friend Robert has to travel to Salford to be seen by a neurologist.

    I have to have a routine blood test as part of my annual cardiac/blood pressure review. Simple thing a blood test – takes about 10 minutes maximum. First attendance at the clinic – there are no appointments - advised I will have to wait 90 minutes to be seen. Next day advised 120 minutes. Finally I have my blood taken after waiting an hour at another clinic on the last day of the week. This is the ultimate in treating human beings as objects to be processed with no thought for their convenience and well-being. Everything is dictated by the needs of the big organisations which are getting bigger and progressively less close and responsive to their communities. My personal irritation is small compared with the inconvenience and exhaustion which this scheme inflicts on people who are iller than I am and require repeated blood tests to check on progress and blood levels of dangerous medication. The talk is of ‘person-centred’ services. The reality is far from this.

    The networks of churches and chapels which characterise this and other countries are currently underused for what might be expected to be their main purposes: spiritual nurture and development, strengthening and confirming the faith of individuals and fellowships.

    The answers to my question to friends at the Drop In may mean that such concepts are not uppermost in the minds of older people in 2017.

    ‘Where have you gone to my lovely?’ Have we been sucked dry of awareness of our special being by the systems which deny us this?

    People are pained when they are ill and faced with prospects of suffering and worse – only to find that their humanity is set at very little by the systems sponsored and employed to help them at such times.

    I cannot see how personal spiritual nurture and development, strengthening and confirming of faith can be achieved by monstrous mega-super-store churches (cathedrals).

    Health will come more surely and successfully by better stewardship of networks which have their origins in the histories of local townships and their populations – Health spiritual, Health social, Health psychological, and Health physical.

    In all of this I marvel at the wisdom of one of our Conversationalists who, when asked what is most helpful to a person with dementia, said quietly: ‘Be there and love me.’

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    3rd December 2017 | By David Jolley

    The November issue of Age and Ageing includes two studies, which are beautiful in their simplicity and their roots in history by their methodologies.

    Bringing them to the attention of our seminar group, I was saddened to find that I was the only one present to be a member of the BGS (British Geriatrics Society). Almost all psycho-geriatricians of the 1970s became members – we worked closely with physician colleagues (‘Geriatricians’) – we fought battles together, developed joint services in the community, in clinics and in beds, and we did clinical and other research together.

    Some of this survives and is a blessing but changes in services and personnel have weakened the links. Would it be that the generous vigour which comes with the union can become widespread again.

    A paper from the 10/66 group describes a study which uses data from 16,940 individuals aged 65+ living in China, India, Cuba, Dominican Republic, Peru, Venezuela, Mexico or Puerto Rica. In so doing it demonstrates the power based in the 10/66 initiative by its durability, recruitment numbers and diversity of populations included.

    The 66 refers to the percentage of people with dementia living in low and middle income countries. The 10 to the percentage of published population based studies of dementia conducted in these countries at the time that the study group was formed https://www.alz.co.uk/1066/. Their work has probably changed those ratios a little – and made for learning and improvements to services world-wide.

    Findings were that self-rating of health amongst these older people from the several countries showed an interesting pattern: in most instances more than half these populations rated their general health as good on a three point scale, no more than 10% rated their health as poor.

    Perception of health was better in towns than in the countryside and better in men than in women. There was a very strong positive association between a rating of good health and survival over four years. Such a simple question. Such a powerful predictor of health and survival.

    The second paper comes from Newcastle with an analysis of the relationship between grip strength and survival over 9.6 years by 845 people aged 85 years or older at the beginning of the study. Grip strength was measured by a hand-held dynamometer http://www.taheeltech.com/product/hand-held-electronic-dynamometer/. Weaker grip and progressive weakening after the baseline measure, were strongly associated with reduced survival. Again a simple measure with powerful and useful predictive value.

    When I began to read about psychiatric studies, we learned the techniques of Kraepelin, Bleuler and other classical, clinical researchers: Later I was reading Felix Post. Their methods required clinical observations with minimal equipment and careful follow up. These most recent papers in Age and Ageing use the same formula. It is so refreshing to see the well-tried, modest approach bearing fruit in this day when hi-tech may sometimes seem to be essential for any progress to be achieved.

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    27th November 2017 | By David Jolley

    A friendly and informative day with about 24 people – mostly ministers and chaplains working in the North West or near. 

    The ‘hellos’ gave me chance to mention our work at Bowdon Vale. I found I was sitting next to Kathy Deakin who now lives in Gnosall and knows our service there, she is a recently retired chaplain. Graham Hawley was to attend his PhD viva during the afternoon – everyone wished him success. We heard in brief from many initiatives. Interesting to me was an Irishman called O’Hanlon (not remembered his first name, though I had time talking with him). He is an artist working with churches in Wales – it reminded me of my friends at STAA.  http://www.staa.org.uk/index.html and this chap knows STAA and their leader Sharon Baker. I wonder if we might look at something like this.

    The first session was led by Clare McBeath (Rev Dr) https://www.northern.org.uk/Groups/261879/NBC/About_Us/Our_Staff/Clare_McBeath/Clare_McBeath.aspx

    She spoke of her work with the Centre for Theology and Justice http://www.theologyjustice.org/

    Some work relates to situations in the wider world – she cited Greece and Uganda – but also challenges to the churches in the UK to consider injustices and to take action. She referred to Foodbanks and the issues of poverty and inequality, the plights and rights of people without voices in this country. (The suggestion was made that older people, people with dementia do not have a voice)

    She commended the book – Journey into Justice:  https://journeyintojusticebook.wordpress.com/ (I cannot speak about it myself)

    She went on to reference Pope Francis’ approach and reflections on his ’Church of the poor’ www.amazon.co.uk/Church-Poor-Francis-Transformation-Orthodoxy/dp/1626982066

    and she spoke about the creation of an anti-monopoly game – I am not sure this is it https://www.youtube.com/watch?v=Fm1jL_OVd_g but we got the idea.

    She celebrated The People’s History Museum http://www.phm.org.uk/ We should organise a visit and follow this with reflections and action.

    She encouraged the idea of employing an Artist in Residence such as our friend from Ireland who is opening doors in Wales. We could do that.

    Next was Christopher Swift (Rev Dr) www.mha.org.uk/about-mha/management-and-governance/ (best I can do)

    Chris is the new Director of Ageing and Spirituality and has an impressive CV in chaplaincy and Ministry. He began by telling us about Tithonus www.greekmythology.com/Myths/Mortals/Tithonus/tithonus.html - advertising the nightmare of wishing for immortality without taking into account what happened to the ageing body and brain. He readily fell into the theme of the ageing of society and the burden of prolonged dependency which goes with it. I shall point him to: ‘Apocalypse: No’: https://socialsciences.mcmaster.ca/sedap/p/sedap59.pdf

    Chris wondered what might be the important questions to be asking – Looking for a corporate approach to research by MHA.  His thoughts were:

    How to we engage with the variegated and changing community which is older people? (Something like that)

    In what ways can we maximise resources? Or maybe ‘can we maximise the effective use of available resources’?

    Several people offered their ideas.

    Mine would be:

    What is the relationship between MHA homes and community services and their local Methodist Churches?

    Chaplaincy: is the vision to be confined to providing chaplaincy to MHA Homes? All care homes are best seen to be hospices where residents and families have similar needs to those who are fortunate to be with MHA.

    Most residents of MHA Homes are self-funding, because the costs are higher than Local Authorities will/can pay. What are the consequences for poorer old people who have been regular worshippers within a local Methodist community – and may have helped support a MHA Home? How does this situation equate with justice?

    Chris commended the work of John Swinton and Harriett Mowat of Aberdeen University www.abdn.ac.uk/sdhp/personnel-185.php https://scmpress.hymnsam.co.uk/books/9780334049883/practical-theology-and-qualitative-research---second-edition

    In terms of relating to residents and older people in general, Chris’s advice is: ‘Bring your bag – And the residents will take it.’ Needs thinking about – but not for too long!

    After lunch Alma Fritchley reported on experiences collected and analysed for her BA Thesis. She is a down to earth person with a sense of humour: ‘After a short working experience (36 years) at the Inland Revenue, I found myself free to do something different’. The something different was to engage in study at Luther King House. This led to her beginning to spend time on a voluntary basis at a large local Care Home, which had been taken over by MHA. Firstly shadowing the chaplain, I think she was then employed as an assistant. Her study looks at the feelings of care staff when a resident dies. She opened with Nina Simone: Another Spring www.azlyrics.com/lyrics/ninasimone/anotherspring.html

    She spoke of ‘disenfranchised fragments’ and ‘residual fragments’, and ‘corporate grief’. From the perspective of staff, loss by death at the home, though saddening, is preferred to loss by transfer to die somewhere else.  An impressive and thought-provoking presentation.

    The final lead presentation came from Kathryn Lord and Carrie Twist, speaking enthusiastically about their Godly Play project in Sheffield https://godlyplaymutualblessings.wordpress.com/about/godly-play-in-elderly-and-dementia-care-settings/

    This is something we have some experience of. Sheffield is clearly making much more of it and there is much to learn of this a mode of communication and opening time and space for people who are otherwise too anxious or full of doubts, to share their feelings, memories, hopes and suggestions. This – like the idea of an artist giving time and space – emerged for me as the major theme and stimulation of the day. Reference to the writings of Jerome Berryman whose invention Godly Play is.

     

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    20th November 2017 | By David Jolley

    The opening debate addressed a motion: ‘Research has brought us no closer to a cure for dementia than we were a decade ago. Therefore funding should be switched to researching care and support’.

    I’ve not been keen on the debates in recent years as they have usually felt contrived and all-but tangential to matters of real importance. This, however, struck a chord and I was very glad to be there for it.

    Although over 800 people had registered for the congress there were, by my estimate, less than 200 in attendance at the debate – but they were engaged. A survey of thoughts before the debate found 40% in favour of the motion, 41% against and the rest on the fence.

    Two postgraduate students – previously a nurse and pharmacist respectively – treated us to a gentle review of the sort of things we should be considering in formulating our views:

    ‘Knowledge is of no value unless it is put into practice’, we were reminded came from Chekhov.

    Claire Surr, a social scientist from Leeds Beckett University spoke for the motion. James Pickett – head of research at the Alzheimer’s Society spoke for the status quo and the devotion of investment into biological research: much talk of genes and the inevitable coloured PET scans demonstrating success in removing amyloid from brains – but he did not confess that this success is not matched by clinical benefits. 

    Contributions from the floor flowed freely. They were well expressed and to the point and from particular perspectives. There were notable observations from people with dementia and carers. In summarising, Professor Surr reflected that mostly those living with dementia or caring for people with dementia were for a shift in research toward care. Dr Pickett could find no matching comfort. There was a substantial swing in favour of the motion. Very few remained on the fence. Everyone agreed that the total funding of research relating to dementia and similar disorders should be increased.

    This set the scene for two days of growing confidence in independent, sensible thinking – with a view to implementation.

    Our own early morning session reflected on work in the Isle of Wight and Bowdon with dyads of a minister of the church and a dementia professional hosting monthly sessions: ‘Dementia Conversations’. These are giving time and space for local people: with dementia, or caring or just interested, to come together and grow in understanding and to learn about the strengths and weaknesses of local resources and how to make best use of them. The mode is of guerrilla war, finding strength in each other through honesty to set against the facts and fictions of statutory and A-List charities. This sees the network of churches and centres of other faiths as something which can become more than passively friendly, but resting control for the people who really know, care and live with this.

    Our partner in this session was Julia Burton-Jones, from Rochester, who recruits and trains Anna Chaplains. Anna Chaplains have been growing in number since 2009. Their mission is to older people, including those with dementia. www.thegiftofyears.org.uk/anna-chaplaincy-older-people

    Their activities sound to be similar to those we see evolving in Dementia Conversations but apply to a wider group – Maybe there is sense in that. The chaplaincies are, I believe, funded posts and this too may be a strength in attracting resources and maintaining an impetus, though there is much to be said for voluntary initiatives and the freedom that is associated with these. I have a sense that we will learn from each other.

    Julia uses ‘Pictures to share’ to encourage conversations. Themes she encounters include: understanding and acceptance, religious belief and connection to the divine, things which bring love and respect, positivity, hope and peace.

    She touched on the relationship between Person Centred care and spirituality. Phenomena which bring spirituality to the fore include: being in the countryside, prayer, music/concerts, dance/sport, family/relationships.

    She referred us to the podcast: ‘Things unseen’ www.thingsunseen.co.uk/

    The first main hall plenary session is the keynote for the congress

    There was a very good turnout – I would think 800 was a fair estimate of numbers.

    The Three Nations Working Group www.dementiaallianceinternational.org/three-nations-dementia-working-group/ spoke impressively of their work which is in its infancy compared with the Scottish Dementia Working Group. Wendy from Stockport, who was to star at other times during the congress, showed humour and sincerity and introduced us to her blog: https://whichmeamitoday.wordpress.com/ 

    Great emphasis on positives: ‘Nothing about us without us’. Enthusiasm for the disability model and utilisation of a rights framework (unwanted effects from which need to be given some thought). But reflection that the group comprises articulate people with mild to moderate impairments at present, but they carry an awareness of what they called ‘the darkness of end stage dementia’.

    Cue the next speaker: The peerless Dr Liz Sampson of University College London. Her research and publications are well known. She is one of the people who have brought end of life with dementia to prominence and its proper place within thoughts and services. Despite progress there is much still to be done. She drew attention to the European Association White Paper on Palliative Care in Dementia www.eapcnet.eu/Portals/0/Clinical/Dementia/DementiaWP_PM2014%2C28%283%29.pdf

    She confirmed that dementia is now accepted to be the leading cause of death amongst men as well as amongst women – and she emphasised the important role of care homes in providing the setting for death by most people with dementia in this country. The recent Marie Curie tells us that more than 70 hospices are now working positively with care homes – a truly great development https://www.hospiceuk.org/media-centre/press-releases/details/2017/08/09/new-report-highlights-the-role-of-specialist-palliative-care-support-to-care-homes-in-delivering-high-quality-end-of-life-care

    Dr Sampson described a study of 85 people who had died with dementia which found that 81% had been receiving help from their GP, 28% from Palliative care services and 20% from Paramedics. Only 1% were in contact with a CPN or Geriatric services. More than 50% were experiencing problems with eating, pain or agitation in their last days. 

    Models of care based on hospice are emerging: http://spcare.bmj.com/content/early/2016/10/14/bmjspcare-2016-001138.long 

    Then came Jackie Doyle-Price who is Parliamentary Under Secretary of State at the Department of Health. She was welcomed – it was a relief and a treat that the minister came in person to listen and to deliver her communication. (The previous two years we had to watch a video!). Her speech was essentially a celebration of achievements. This included reference to £150 million to research in dementia – which will be added to by contributions from the Alzheimer’s society and Alzheimer’s Research. The UK claims world leadership in dementia services and research.

    She appeared to believe that ‘there is now greater access to care and support’. There was no opportunity for questions.

    My next session was End of Life, chaired by Jean Tottie. 

    Karen Harrison-Dening shared some of the findings from her PhD study which investigated the reliability of the views of carers on what they would wish when faced with decisions on being treated with antibiotics, being tube fed or offered CPR in different scenarios – 

    Most thought-provoking for me was her throwaway at the end: Advance Directive: ‘My present views trump those of me with dementia (and lacking capacity). Umph

    Rachel Hutchings from the Alzheimer’s society spoke about the Mental Capacity Act.

    Anna Gaughan spoke about Life Story Work and especially about TIDE – Together in Dementia http://www.lifestorynetwork.org.uk/tide/

    The keynote Tom Kitwood Memorial Address was delivered this year by Professor Murna Downs. Murna brings both intellect and compassion to everything she does – so it was with this. She too wanted to emphasise pleasure at achievements – and chided herself for whingeing when things are not right. But it is important to balance optimism with honest observations of reality – that, for sure, was Kitwood’s way. She credits Kitwood with releasing people with dementia who were ‘in a cage with a lid on’ before his seminal communications. She celebrated the idea of ‘living well with dementia’, the recognition that physical health and mental health have reciprocal influences and the realisation that ‘we know that families are involved’. 

    All true and wonderful. Reference to publications in textbooks and journals show that the importance of general health and of families have been recognised since time immemorial, and considering a person with dementia to be a person is not as new as some would appear to believe. There is much to celebrate – there are heroes to thank over many decades, including Tom Kitwood and Professor Downs – we ride on the shoulders of giants.

    Design and Public Spaces – Took us to Hampton Court with Sensory Palaces: www.hrp.org.uk/hampton-court-palace/explore/sensory-palaces/#gs.b1UHlt0 An interesting idea and one which might be explored in other parts of the country with our noble houses.

    Mary Marshall took the limelight with ‘Let’s talk about toilets’. http://www.dementiacentre.com/shop/free-resources/toilet-talk-accessible-design-for-people-with-dementia

    Then the team from EDUCATE spoke brilliantly about their contribution to improved signage – I have written about this in last week’s blog.

    My final session for the Wednesday demonstrated the use of technology and films.

    Phil Joddrell from the University of Sheffield showed work from AcTo dementia – similar to the presentation by the Professor from Sheffield who gave the Tom Kitwood lecture last year https://www.actodementia.com/. A second Sheffield paper reported on the impact of Digital Reminiscence Therapy Software amongst patients in general hospital wards.

    A group from St George’s in London reported on positive benefits from MyLife software made available to residents of care homes. There was an uncomfortable intervention from a member of the audience who congratulated the researchers but said the software had been stolen by the MyLife company!

    Zoe Flynn and Bo Chapman then described an extraordinary project in which they had worked with residents and staff of a care home that was to close. The exercise was designed to ameliorate the trauma likely to be felt at this transition. The essence was to work together to produce a film, which included stop-go animation, to capture the life of the home which is to be lost – Thus that life is preserved in this informative, sensitive and amusing film. Brilliant. Watch it if you dare: https://www.youtube.com/watch?v=-IHGXWlzQEc 

    My involvement in The Thursday sessions was knocked about because of news that came to me during the morning:

    Early Morning I joined Clare Morris and Louisa White in a session discussing and demonstrating Kelly’s personal construct theory.  http://www.centrepcp.co.uk/whatis.htm . This sees the individual, including people being changed by dementia or other illnesses, at having a view of themselves and seeking validation from the environment. Where there is dissonance between how I see myself and others/objectivity see me – There can be problems.

    Clare provided beautiful and intricate coloured cards in a pool from which we could choose one – and from this we explored our projected meanings in pairs. Learning by doing. I have purchased a set of cards from DiXit to use in Dementia Conversations

    I went directly on to meet the Young Dementia Network. https://www.youngdementiauk.org/ Wendy Mitchell spoke passionately about the strengths she gains as someone who was diagnosed with dementia in her late 50s. She had found people, especially professionals were ignorant of the condition and hurtfully unhelpful. The activities of the network aim to counter this by information, education and research. The network has been in existence for 12 months and has 1,000 members – roughly 70 are individuals with dementia, the balance being other interested family and professionals of many backgrounds. There are few specialist services for people with Young Onset Dementia. I met a researcher from The University of Hertfordshire who is planning a review of what services there are and how well they work.

    Things then went into a spin as I learned that Tim Spencer-Lane, with whom I was booked to present an afternoon session: ‘Replacing DoLS’, had become unwell and could not attend. This meant the main presentation of the background and the Law Commission Report and suggested alternative for the future fell to me alone! The marvellous IT people at the congress located Tim’s slides so that I could speak sensibly to them. We added one on estimated comparative costs and benefits of fully funding the failing DoLS or funding the improved, more comprehensive system of Liberty Protection Safeguards. Lynne Phair chaired the session and Amanda Coyne of Rotherham Social Services joined me and provided a well-informed but less persuaded view of prospects. Basically either system will be very costly. The costs will fall mainly on Social Services who are already severely underfunded for what they have to do. We are encouraged that the House of Commons has recently prepared and circulated a briefing paper to all MPs on this topic. The Government’s interim response to the Law Commission Report on Mental Capacity and Deprivation of Liberty, published by Jackie Doyle Price (the same) is encouraging. There was an informed and productive discussion – another step along this difficult road.

     

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