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  • 5th March 2018 | By David Jolley

    Time to look forward to the Dementia UK Congress in Brighton in November. It is good that the congress has moved around the country during these 12 years but, even though the series started in Bournemouth, Brighton has become its natural home. I’ll not forget my first Brighton Congress – walking down the hill from the station past relaxed pairs who were playing chess on the pavement. Playing chess on the pavement! It is a message which we can all take as our own: whatever the mad, mad, wicked world is up to – I will find time and a place to do life well.

    What I am wanting to do is to celebrate good things which have developed in recent years – and prospects for even better – but also to pay respect to where we came from and how improvements have been achieved. Learning from the past gives sound direction for the future.

    It is difficult to remember that, before Martin Roth performed his careful description of the clinical characteristics and outcomes of older people admitted to Graylingwell Mental Hospital, all serious mental disorders of late life were commonly pooled under the label ‘senile psychosis’. From then on we have known that depressive states in later life are usually recoverable with the use of ECT or antidepressants which were introduced during the 1950s, delirium may end in death but otherwise usually resolves, but dementia persists and progresses to an early death.

    Roth M. (1955) The natural history of mental disorder in old age. Journal of Mental Science, 101, 281–291

    There were few studies of the prevalence and incidence of dementia. Those that were known included Roth’s classical series in Newcastle upon Tyne:

    Kay DW, Beamish P and Roth M (1964) Old age mental disorders in Newcastle upon Tyne: 1 – A study of prevalence. British Journal of Psychiatry 110: 146-158

    There were at least five people living with dementia in ordinary housing for every one in any sort of institutional care: institutional care at that time would be a long stay hospital or local authority home. There were very few care homes or nursing homes within the independent sector. There were no major charities devoted to dementia. The legislation of the time made scarce reference to issue of capacity amongst the rising number of older people affected by dementia. Life expectation for someone with a diagnosis of dementia and entering care was short with hardly any surviving for more than two years.

    Our understanding of the biology of mood disorders and dementia has advanced considerably during the past 50 years. The pattern of care offered to people with dementia is radically different now from that of the 1960s – a shift determined in part by response to exposure of the scandalous regimes practised in some institutions, but also by issues of economy and political perspective. The funding of care has become complex and contestable, legislation has changed and will change further.

    Perhaps a reflection on these changes which have occurred during a working lifetime will be of interest and give thought for plans for the future.

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    Our Friday sessions are lively and informative affairs. This week was almost exhausting in the range of topics which required a least a mention:

    We had Von Economo neurons and Super Agers: www.theguardian.com/society/2018/feb/19/scientists-unravel-secrets-of-superagers The story is that a study of the brains of 10 people, who had remained lucid and exceptional in the preservation of their intellect until immediately prior to death in old age, found unusual concentrations of the large bipolar neurons which were first described by Von Economo and colleagues 1925. For most of us the name is just about recognisable but has no links. Earlier studies have remarked on reduced or increased numbers of Von Economo cells in subjects with Autism. They are present in the brains of all the great apes as well as human beings. What the significance of these reported findings will turn out to be we do not know – but it gives an alternative to confinement to the cul-de-sac which the Amyloid Hypothesis has become.

    We are reassured to find that a meta-analysis confirms that antidepressants are effective. It is particularly satisfying that this elegant study, which is free of drug house sponsorship, found that amitriptyline – one of the oldest tricyclics – stands out as the most effective: https://www.theguardian.com/science/2018/feb/21/the-drugs-do-work-antidepressants-are-effective-study-shows This paper will bear closer examination in the future. 

    We will need to return to Alan Maynard, whose obituary is untimely but reminds us of his contributions to the change in thinking and values which has occurred since the 1970s: www.theguardian.com/society/2018/feb/16/alan-maynard-obituary

    Mostly we were swept along by unexpected enthusiasms released by the report which begins: ‘It could, if the results stand up, be one of the most dramatic medical breakthroughs of recent decades. It could transform treatment regimes, save lives and save health services a fortune….’ https://www.theguardian.com/commentisfree/2018/feb/21/town-cure-illness-community-frome-somerset-isolation

    The project has been described more fully previously:


    and in a current issue of Resurgence and Ecology:


    The essence is that one General Practice in the village of Frome determined to break free from a model of treating illness, preferring to get to know people and to help them see themselves as individuals who are part of a local community. They brought together information of activities which might be of interest and have some therapeutic value and supported people in joining where they had previously been shy or reluctant. In Frome people like it and have derived personal benefits and contributed to enriching their community.

    This is an example of approaches which are being championed, especially by the palliative care community: www.kingsfund.org.uk/sites/default/files/media/Catherine_Millington-Sanders.pdf

    Wonderful – but it will never happen around here. It is all very well in Frome and maybe in Gnosall and rural Norfolk, but it could never work in urban Manchester – could it?

    The amazing turn of Friday was that there was a flush of excitement at the possibility of doing just that. Wythenshawe is made up of a series of village-like communities on much the scale of Frome. General Practices could become centres of similar social engineering for health and well-being. It will need more thought and work but we made a start by listing activities which might be core elements of most community networks:

    • Dog walking (animal welfare)
    • Community bus/taxi
    • Shopping
    • Men in sheds
    • Park
    • Handyman jobs
    • Intergenerational lunchtimes
    • Allotments

    Would Tesco help? – We heard of models based on sharing ‘out of date’ food to provide food for people who are short of funds and food but can learn how to make use of unwanted cast-offs to produce wholesome meals. 

    We heard of models from Scandinavia – Norway https://www.ijic.org/articles/10.5334/ijic.2217/

    So there is literature to help.

    But could we really do something like this in Wythenshawe?

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    19th February 2018 | By David Jolley

    Next month will see the second anniversary of our Dementia Conversations group. This month we met on Shrove Tuesday but did not brave the hazards of pancake making. It was the day before Valentine’s Day – so we did touch on romance with red felt hearts and the biggest heart-shaped chocolate cake.

    As people gather we make sure the room is warm and welcoming. There is tea, coffee or juice. This week the warm drinks were particularly welcome as the temperature outside was barely above freezing. Ros Watson opens and encourages people to share their thoughts and stories. This week we were joined by Louise and Liz from TIDE: http://tide.uk.net/

    We learned that TIDE has evolved from the carers’ part of Dementia UK. It now has a life of its own and is supporting carers and providing training so that they can speak about their experiences with confidence. This is good for the carers and provides education in various settings and informed representation in committees and lobbying opportunities. Their presence released powerful stories from people who have been encountering crises in their care situations. We learn how services can be contacted and respond. We see how reorganisation of services has meant they address extensive areas of Greater Manchester and seem to believe that when a bed is needed, one which is 15 miles away is just as appropriate as on nearby. These experiences also bring us to the realities and practical application of the Mental Health Act.

    Revision of the Mental Health Act is underway, as is consideration of a better legal and service framework for people who lack capacity by virtue of being ‘of unsound mind’, but for now we have Section 2 and Section 3 of the Mental Health Act and DoLS. There is nothing like using things for gaining an understanding of them.

    Tasked with advising on what to say to general hospital wards about the needs of carers when individuals with dementia are admitted, we were able to draw on personal, sometimes painful, experiences. These were the key points raised: Empathy. To be fully consulted – Daily updates. All aspects of discharge. Definite dates. Flexible visiting. ‘This is me’ https://www.alzheimers.org.uk/downloads/download/399/this_is_me_tool

    Safety first. Correct information. Respect. To be heard. Own clothes and possessions. Staff to have an understanding of mental health conditions including delirium.

    Clear communication with the patient. Mirrors, crockery, cutlery, routines.

    Carers to be asked how much they wish to be involved.

    A culture of kindness. A link worker for carers.

    Carers are concerned for their loved one: What have they been admitted for? Will their dementia needs be met? Continuity. Individual likes and dislikes. Not one-size-fits all. Respect. Dignity. Maintain well-being not just treatment of a medical condition. Decent food and hydration. Time to gain and give understanding and reassurance. A Dementia Friendly Ward. Trained nurses. Good signage. Someone for family to talk with. Occupational Therapy.

    • Respect
    • Information
    • To be listened to
    • To be involved
    • To be understood
    • To be offered help with stress and illness
    • To be offered education and maybe training

    Much to be said for asking the people who are living with these challenges – threats to their very being and sense of self – It is a good way of learning.

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    Limits 14 February 2018 | Comments (0)

    My friend Roger is in hospital in North Wales. He has a broken dislocated ankle having fallen whilst out on a regular Thursday walk with other friends, all in their seventies or eighties. The weather was bad and the terrain treacherous. Roger’s eyesight is not so good and he has been having falls. He fractured a patella in one such only a few months ago. Medication may also be making his balance less certain.

    The little group waited and shivered for over two hours before the mountain rescue team could get to them. Roger was shivering most and enduring dreadful pain. It is a relief that he has become safe in hospital and we hope surgical interventions will bring him back toward the state he was.

    Tomorrow we will be walking with a group of ten or more on our local park and maybe onto roads and green spaces nearby. There is walking and talking and time for more talk for an hour, followed by simple refreshments and more talk and chuckles. It is just to get out and to enjoy the pleasure of the air and what is to be seen and how your body feels to be used. We hear of one lady’s friend and neighbour who has not been out of her flat for more than a year. She spends her time with food and drink to either hand, TV before her – her legs have become weaker, her weight is increasing. Movement even within the flat is becoming an adventure, and hazardous.

    Somehow we have to steer a course which keeps people safe but lets people keep moving.

    As a teenager in the 1950s and 1960s, a hike in the countryside of Shropshire or Derbyshire was a treat to be experienced on Bank Holidays. Transport was a commissioned, ancient double-decker bus in blue livery. We went slowly along the roads, making heavy of any incline. All passengers were willing the engine to keep pulling so that we could get there – and hopefully get back. We had packed lunches, no alcohol, but easy sing-songs: just the wonder of the air and the scenery and the spiritual buzz to be close to the earth that God made.

    Roger’s group is the ‘graduate’ outcome of weekly hikes of young families from the 1980s. Can you have too much of a good thing? The children of the families have found other things to take their time. It is the senior men who have clung on to a routine which has obvious attractions, but dangers now as bodies and sensory apparatus are less flexible and less reliable.

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