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  • 22nd February 2016 | By David Jolley

    February 17th was a red letter day for Dementia Pathfinders with the publication of Pippa Kelly’s article on page 38 of Society in the Guardian. It tells a positive tale of learning and training to improve the lives of people who develop dementia when they are young.

    The full report of Pathfinder’s work which lies behind this is an impressive review which considers the experiences and needs of families and individuals from onset, through life with the condition, to dying, death and beyond http://www.youngdementiauk.org/sites/default/files/approaching_an_unthinkable_future_lr.pdf

    There is no doubt that individuals who develop dementia in their 50s or even earlier, have very special needs and require bespoke responses from those providing care and therapy. These are outlined and considered in some detail. It is a great thing that the work of Pathfinders has been showcased in this way and encouragement given that young people with dementia can expect better care and wider respect and recognition.

    The principles of care and understanding championed here are applicable across the age bands, gender, faith and social class, with or without multiple co-morbidities. I hope these principles can be applied in local groups drawing together families of people with dementia and similar conditions all around the country.

    Straying around the page, we were drawn to the stresses experience by professionals in their efforts to help people – stresses intrinsic to work with people who are unwell and disadvantaged, but made more difficult by lack of resources and service/management structures that do not always fit the needs and lack flexibility. Coaching, mentoring, supervision, knowledge transfer – all these are mentioned as approaches to the healing of the healers.

    Candace Imison holds out for the positive advantages which might come from digitalised data/the paperless world.

    I am not convinced. I see colleagues required to spend hours ‘feeding the beast’ of computerised records, studying on line to feed another beast of appraisal (sitting alone with a computer terminal). Who cares or who knows that what is really important is person to person contact: patient/carer/profession and other professionals. Nothing is as effective as continuity of a therapeutic or collaborative relationship between individuals who know each other – You cannot produce this by cobbling together bites of information across the ether.

    The reverse page (37): Dawn Foster gives the lie to the headlines of the week that more people are in work than for a decade: 47,728 households were removed from their homes by bailiffs during 2015 – the highest number since records began in 2000.

    Peter Beresford writes that remodelling of services to make them relevant and affordable will require involvement of people who need the services. Well fancy that! A conclusion which chimes sweetly with Pathfinders and Pippa Kelly’s article.

    But page 37 is dominated by an etching of ‘The Grim Reaper’: Stewart Dakers, who is older than I am, reflects on the impotent anger with which faithless devotees of modern culture address death. Surely this is not allowed! There must be a mistake!

    There is no mistake. This is life.

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    18th February 2016 | By David Jolley

    The journey of last week took me to a study day on ‘Mental Health in Palliative Care’ which was organised by Wigan and Leigh Hospice and presented at the Leigh Sports Stadium. 

    I have been to Leigh only once before and that was to a Sunday morning study day at the medical institute which was a beautiful facility accessed via a stunning terrace-house façade. I had learned it is possible to get to Leigh from Altrincham by wriggling through Warburton, over the toll bridge, onto the A57 and then cross country: no motorway driving! The map told me I should turn right onto the A57 and then left onto the B5212 which would take me to Glazebrook, then Holcroft to turn right on the A574 Warrington Road, left the A580 East Lancs and right on the A579 Lowton St Mary’s Road which becomes Atherleigh Road. That would take me to an island from which I should turn right onto Sale Way and the Leigh Sports Village. So – a bit of a wriggle – but what fun and what a pleasure to outwit the motorway grid. No accompaniment by SatNav Sal – I struggle to cope with the technology unless someone sets it up for me. But an outline map in my head of where I am going, checked against a handwritten sheet in BIG WRITING which rehearses the roads and turnings. Success is a thrill. But it was more than that – a rainy day was interrupted by sunshine travelling between the fields of the B5212. These fields and houses were new to me – startlingly green and fresh with the rain and low-angled bright illumination. 

    And there were rainbows. Rainbows are special and tell of something wonderful.

    The Leigh Sports Village is based in the Leigh Rugby Stadium. Parking is in the nearby supermarket carpark. The people attending were drawn mainly from hospices and palliative care services around the North West. The programme for the day was bravely relevant in addressing the importance of mental health in palliative care and palliative care for mental health services. We need greater recognition of the relationship between these two worlds which should know each other. 

    • Helen Millar reviewed the management of palliative care needs amongst people with established serious mental disorders. Wow.
    • The effervescent Professor Marie Lloyd Williams took us through the importance of depressive states amongst people known to be dying, illustrated and given depth and understanding by her own studies. Marvellous. 
    • Alison Colclough took us to the growing community of people who are homeless in this country – making reference to the studies and experiences of St Mungo’s in London, but further illustrated from the streets of Cheshire. Here mental illness is common and death comes early. We were transfixed. 

    There were more presentations on mental health services and treatment options for psychiatric problems amongst people approaching death.

    My half hour looked at ‘Dementia and end of life care’. It was a chance to reflect on care at the end of life and deaths amongst people with dementia. Chance to reflect on the current shroud of fear which surrounds ‘dementia’.

    In the 1960s mental health services for people with dementia were based on mental hospitals with large wards and skeleton staffing: death would come within weeks or months of admission.

    Powick Hospital



    Thanks to Claire Hilton for these links

    Roger McGough was a young man and wrote about death and his preference for how and where it should come to him:

    Let me die a young man’s death. In The Penguin Modern Poets: The Mersey Sound 1968

    In recent years his thoughts have turned to the prospect of becoming changed by dementia in the years before he dies. Dementia and Alzheimer’s disease are the greatest fear of people in their 50s and beyond

    A fine romance. In The Awkward Age. Penguin 2010

    So this is where campaigns to advertise the importance of dementia have taken us 

    In the 1960s we were learning for the first time something of the social dimension of life amongst people surviving to experience dementia and frailty, summed from multiple pathologies, at home.

    Bernard Isaacs, Maureen Livingstone and Yvonne Neville. Routledge and Kegan Paul, London 1972

    And we had become painfully aware of the institutional neglect of older people in mental hospitals. This awareness through the publication of serial scandals was the springboard to do things differently, to do things better.

    Barbara Robb: Sans Everything. Thomas Nelson and sons. Camden 1967

    D J Jolley and T H D Arie (1978) Organisation of Psychogeriatric Services. BJPsych 132  1-11

    So much has been done, yet so much remains to improved


    It is encouraging to know people’s personal stories of good times into and out of dementia

    Tony Husband: Take Care Son. Constable and Robinson Ltd. London 2014

    And one of the very best developments is the involvement now of hospices in the spectrum of services reaching out to people with dementia and their families. Fabulous people to meet in Leigh – part of the impressive network of independent thinkers and practitioners who populate this sector.

    Tapley M, Regan A and Jolley D (2013) Hospice: putting the heart back into dementia care. Journal of Dementia Care 21 (5) 14-15

    It was a good day. This is a good journey with showers and sunshine, rainbows and hope.


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    07th February 2016 | By David Jolley

    Oh – This has been a week of challenges!

    The week began with the Guardian giving headlines on its front page to the proposition that: ‘Loneliness will cripple the NHS’. 


    And deeper in the same issue came a review of ‘Bed Blocking’ by ‘The Elderly’. 

    Well I was not comfortable with ‘loneliness’, nor with ‘cripple’; I thought we had outlawed reference to ‘bed-blocking’ some years ago and it is decades since Bernard Isaacs urged us the get rid of 'The Elderly'. (I gather he actually wrote "Let’s abolish ‘the elderly’").

    ‘The Elderly’ defines a group who are ‘not us’ – set apart for special treatment or with expectations that are at odds with the mainstream. They block beds, which should be (irrespective of age, gender, race, religion …. whatever) used for the proper purpose of the NHS, cure of younger people. Hence the perception that one way or another they are crippling this worthy animal (the NHS).

    Really the National Health Service is here to provide an appropriate response to the health needs – often complicated by social needs – of anyone and everyone.

    There is a misfit between what we are providing and what is needed. This goes across the health/social care spectrum. The problem is not with the needs – though maybe we can do something to reduce these; the problem has to be with the pattern and capacity of provision – and this we can certainly do something about. 

    I railed at ‘loneliness’ because it is so often equated with an older person living alone. Solution is that everyone moves back to multi-generation households or communal living. There may be advantages to such arrangements for some – but you can feel quite ill at ease cum lonely in your daughter-in-law’s kitchen, and life for children and grandchildren might be strained by the presence of a loved one of another generation and of different experience and expectations. Living with or near other older people can have its advantages, but there can be downsides.

    ‘Loneliness’ is not an objective state of isolation but a subjective feeling of being bereft, that the social environment is hostile and not supportive. It is very common among young people and is usually best seen as a symptom of depression or other illness rather than a social matter per se. When older people feel lonely, their reversible unmet needs are likely to be health related. They require awareness of this possibility, accurate diagnosis and tailored treatment rather than dismissal – as ‘not for us’ in this world of triage. 


    Sally Davies wrote critically of the concept of ‘well-being’.


    Focussing attention on loneliness without acknowledging its complicated aetiologies may be as misplaced and potentially dangerous as easy reference to well-being. Beneath the fluff there are hard realities which we can address to useful effect.

    A Care Worker’s Diary puts our feet on the ground and hope on our hearts.

    ‘Dementia in this case can be beautiful ….’


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    Friday lunchtime with ten medical students – a wonderful opportunity for reflecting on the state of our world. The student – modal age 22 years, gender split equal have come to Manchester and to Medicine from many places: Bolton, Stoke (or near Stoke), London (where there?), Brunei, Germany, Malaysia, Mauritius and more. Manchester? ‘The only place which would have me’ (a sort of modesty – in fact it was his first choice).’ It is good for Medicine’.

    Medicine? Interesting, challenging – but underlying all – and scarcely admitted without a nudge – A wish to use talent and time to help others.

    The Guardian newspaper has continued its articles about the NHS – and also found top news stories which feature healthcare: ‘Cuts blamed as mental health death toll soars’ was the front page headline on Tuesday.

    These are not deaths amongst old people but the clients of inpatient and community services for patients with serious mental health problems of working age. Numbers in contact with such services have increased, beds provided have fallen: 751 patients killed themselves 2014-15 compared with 595 2012-13. Deaths from all causes have risen from 1,413 to 1,713.

    So we thought a bit about why people with severe mental illnesses die young. Some deaths are violent and may be at their own hand. Others are of natural causes – linked to illnesses of poor diet, poor habits and being poor. And we rage for a while on the lack of employment amongst the people who are known to psychiatric impatient and community services. We remember that the mental hospitals appreciated the therapeutic value of work. It was all they had before ECT and neuroleptics. Neuroleptics, antidepressants and mood stabilisers fail to help people achieve their potential if they have no work.

    The final column of page 11 provides insights into the working week of an Old Age Psychiatrist. Citing only one patient a day Monday to Friday the diary covers a range of scenarios and vignettes. It is puzzling that four of the five patients are men. That hardly reflects the world we know. Alcohol dominates the lives of two, depression the lives of a further two and dementia finds a place only on Wednesday and in a dementia specialist care unit. It gave us a structure to cover the experiences of mental health amongst older people. The theme of the session was: ‘Getting to know you’- and we sang a few lines of the song, as one might in a Cognitive Stimulation Therapy session. The point is that it is useful to know about conditions – but to be really helpful we must find the person and make a connections and work with them in their world of past, present and future. There is so much which can be achieved with the application of long understood therapeutic practices. 

    Page one today tells us that Addenbrook’s Hospital is £60m overspent and St George’s Tooting approaches £46m debt. Jackie Crowther rants on Facebook that hospitals must change to be better relevant to ‘Elderly Folk’ and I rail: ‘get rid of ‘The Elderly’’ after Bernard Isaacs. We do want hospitals to be kind to older people and to people with dementia. But they, like people with other mental disorders, are people.

    We can get it right for people of all ages, gender, origins – at home, at work as well as in hospitals by making best use of what we know and what we have.

    That is the message for these young people setting out on careers which will equip them to help others

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