• Doncaster: November 2017 – 12th UK Dementia Congress organised by The Journal of Dementia Care 20 November 2017 | View comments

  • 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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