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  • Exemplary 16 July 2018 | Comments (0)

    16th July 2018 | By David Jolley

    The Dementia Pathfinders presentation event at 44 Hallam Street last Wednesday was just as good as it could be. I missed the play reading – Fighting for life https://www.mariecurie.org.uk/blog/helens-fight-for-better-care/179099 taking account of train times and costs – But the message is there and it was great that this was part of the day.

    But there was much to see and people to meet and hear from lunch unto teatime:

    Tovertafel was there to demonstrate the power of its magic lantern https://tovertafel.co.uk/ I would like to have one!

    Arts 4 dementia were there: https://arts4dementia.org.uk/ we know the power.

    Agewell CIC: www.agewelluk.org.uk/ were there – and opportunity to meet up with Sandra who is with them 3 days each week and to celebrate their contact with STAA http://www.staa.org.uk/ and the fabulously creative Sharon Baker. Sandwell may be deep in the Black Country but it shines a light for art as therapy and fun. 

    Unforgettable were demonstrating some of their wares and offering a special teddy in a competition: www.unforgettable.org/ - I bought a book of quiz materials which we have already begun to use.

    Care Home Friends www.carehomefriends.org.uk/ is an organisation I should have known about. The principle of Friends to local parks is dear to me and the application of similar arrangements for care homes, hospitals, prisons etc seems to be an obvious follow on. As I read it the particular organisation here is about linking churches to care homes. This is something I understand but I would be keener on a less prescriptive/exclusive model which starts with each care home/hospital ward – and perhaps has overview from Dementia Pathfinders or the Local Authority – not to exclude faith organisations but ….

    There were other discussion tables too - I did not take them all in. 

    The work of Simon Ball in making an animated film which seeks to interpret the observation of someone who was living with Posterior Cortical Atrophy is quite marvellous – thanks to him and to the family. https://blog.alzheimers.org.uk/research/posterior-cortical-atrophy-see-i-see/

    The Margaret Butterworth awards were presented to four wonderful frontline carers by a husband and wife duo – he with mixed dementia – she being his main carer. The poetry of the situation gave extra meaning to the awards. http://dementiapathfinders.org/mba-2016.html

    Mike Parish and Tom Hughes shared the story of their lives with dementia – overcoming stigma and prejudice with grace and good humour. 

    We met the author of Phoebe and the Hot Water Bottles – now out of print and highly valued - https://www.amazon.co.uk/Phoebe-Water-Bottles-Picture-Lions/dp/0006616828 She now struggles with words but retains her sense of humour and fun – enjoying her own creation as it is read to her.

    All this was brought together by the extraordinary Barbara Stephens – She shared something of her current family life in addition to this devotion to the cause of people with dementia and their families. Let us hope the work can be recognised and supported to extend its influence – so much more real and honest than that we hear about from some other organisations.

    Best of all for me was to hear of the growth of Dementia Conversation on the Isle of Wight – and the spread and penetration of its influence into the services on the island. 

    Days like this are power points from which we can begin to do more – Thanks to everyone.

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    9th July 2018 | By David Jolley

    Wednesday is the annual review of the work of Dementia Pathfinders. I have seen the programme for the day and am amazed at how much is being done. I shall learn things and meet people, as well as having chance to say something about our small contribution at Dementia Conversations.

    Having attended my second meeting of the executive of Christians on Ageing I feel I am getting to understand and love the organisation and people. Thirty five years of effort have yielded a modest membership of 200 or so, some nice and relevant publications, though the one I am reading on Spirituality in later life is oddly frustrating in not including list of references which are cited in the text. It is felt that references might be off-putting to readers who are not used to them. There is huge potential and a need to increase the membership – surely every church should have a champion for older people – and an annual meeting to review what is being done and what is next on the agenda, would be a powerful mans of bringing the organisation to the awareness of a wider congregation. Let’s see if we can do this by 2019.

    In my parks’ life, we are struggling to keep up with the watering requirements of the most vulnerable plants. We were pleased with our visit by North West in Bloom but uneasy with the dialogue with the council and Amey – the independent contractor doing the work on parks and other places. The work of Friends groups is crucial to the maintenance and best use of parks in Trafford and elsewhere. More revenue is needed than is allocated because of reduced funds in Local Authorities. This can be countered by revenue generation and we have heard of good examples in Leeds, Wigan, Newcastle upon Tyne and elsewhere – I hope Trafford will use these examples to develop its own model. But success requires trust and mutual respect between the professionals and the volunteers of Friends groups. We need to be able to talk with each other whenever necessary – The official position here denies this and would insist on a formulaic communication through a website which makes no differentiation between Friends and everyone else – and has been seen over the past 2 years to be slow, unsatisfactory and to claim that work has been done when it has not. It is a great sadness that so many people are signed up to the religion of management theory – and adopt it even in their lives away from the office. What kind of life is this?

    Computers getting more like humans? Humans giving up their humanity to become computer-like. Addictive - can we regain control?

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    04th July 2018 | By David Jolley

    So much to think about and so much to study from the report of the Gosport Inquiry - I was pleased to take a look into another world of investigation into possible causes or complications of Alzheimer’s disease. There had been interest in the idea that viruses might play a part in causation – observations going back to the 1950s but new research offers detailed which demonstrate viral materials in excess ‘abundance’ in the brains of people with Alzheimer’s disease – especially in those regions most closely associated with cognition and the other changes which occur in the condition. https://www.theguardian.com/society/2018/jun/21/alzheimers-link-to-herpes-virus-in-brain-say-scientists

    1970s saw measles as able to cause an acute encephalitis – but also a delayed condition subacute sclerosing panencephalitis: the concept was established that a virus could linger for years within the Central Nervous System – apparently without causing symptoms or damage to the neurones, only to assume a more destructive presence after a period of years. 

    Amongst the early investigators to suggest that herpes viruses might be implicated was Dr Ruth Itzaki – now Professor at Manchester University – working with Dr Richard Sutton at Withington Hospital. Richard Sutton was a virologist who established a small laboratory within the Psychogeriatric Unit which we ran as part of the first special service for older people with mental health problems in the North West of England. 

    Many reports have followed – often citing HerpesViride, HHV-6, HHV-7 as the viruses most likely to be implicated. 

    Recent reports suggest that microbes such as these can stimulate amyloidosis as a reaction to their presence in the CNS. This brings together the idea of an invasive virus underlying the emergence of pathological changes we recognise as characteristic of Alzheimer’s disease. 

    The study by Readhead et al reviews careful analyses of the brains of normal people, patients with pre-clinical Alzheimer’s Disease and patients with clinical Alzheimer’s Disease.

    In studies of tissue from 3 independent clinical cohorts HHV 6A and HHV-7 are more abundant in Alzheimer’s disease> Tissue from Superior temporal Gyrus (STG) (137), Anterior Prefrontal Gyrus (APFG) (213), Inferior Frontal Gyrus (IFG) (186) and Parahippocampal Gyrus (PHG) (107). 

    They looked for the presence of 515 viruses – entire viral sequences and individual genomes. The consistent finding was increased abundance of HHV 6A and HHV 7. 

    They looked for supportive evidence from other published cohorts - post-mortem data from: Religious Order Study (300), Memory and Ageing Project (298) and Mayo Temporal Cortex Study (278). 

    They did indeed find supportive evidence – the findings from these studies sum to a conclusion: multiple viruses are increased in multiple brain areas in Alzheimer’s Disease – predominantly HHV 6A and HHV 7 and Roseoloviruses. NB these excesses were not found in tissues from cases of other degenerative brain diseases such as Progressive Supra-nuclear Palsy (from the Mayo TC study).

    The question posed is: Is there chromosomal integration of HHV-6A with host DNA? – It looks possible i.e. the viral DNA changes the host DNA to a pathological formulation which will generate abnormal ‘alien’ proteins.

    Neuronal loss: The studies looked for apoptosis (the death of cells which occurs as a normal and controlled part of an organism's growth or development), necroptosis (Necroptosis is a programmed form of necrosis, or inflammatory cell death. Conventionally, necrosis is associated with unprogrammed cell death resulting from cellular damage or infiltration by pathogens, in contrast to orderly, programmed cell death via apoptosis.) and autophagy. This gave a measure of loss of neurones by these processes.

    They found a ‘strong negative relation between the neuronal fraction and the presence of HHV 6A’. i.e = where there was evidence of viral material, there was also evidence of neuronal loss.

    It is an exciting new insight into the basics neuroscience of the most common dementia. What it means in terms of potential for prevention, treatment or cure will be debated – and then explored experimentally.

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    25th June 2018 | By David Jolley

    This week we have been reading about deaths and care of patients in Gosport War Memorial Hospital https://www.theguardian.com/society/2018/jun/20/disregard-for-human-life-gosport-hospital-inquirys-key-findings

    The inquiry was chaired by Bishop James Jones who had previously chaired the Hillsborough Inquiry and is retired from his post as Bishop of Liverpool. I have not yet found a list of other members of the panel. Headlines describe hundreds of deaths caused or brought forwards over a period of 30 years by care a prescribing practices of a GP assistant. It is frightening and heart-breaking stuff. Whistle-blowers have been ignored, family concerns have been set aside.

    But I am not easy.

    There is also the story of worries about care of older people in North Wales https://gov.wales/about/cabinet/cabinetstatements/2018/tawelfanreport/?lang=en

    This story has received less attention in the national media. The Health and Social Care Advisory Service (HASCAS) http://beta.charitycommission.gov.uk/charity-details/?regid=1064523&subid=0

    Has undertaken a careful and independent analysis of care in a setting where concerns have previously been raised. http://www.itv.com/news/wales/2018-05-03/no-evidence-of-institutional-abuse-at-denbighshires-tawel-fan-mental-health-ward/

    Unlike a report from Donna Ockenden in 2015 http://www.wales.nhs.uk/sitesplus/documents/861/tawel_fan_ward_ockenden_internet.pdf

    HASCAS found there to be no evidence of institutional abuse and, indeed, described the care as ‘a credit’. (I am including the link to the Donna Ockenden report for, though it is marked ‘confidential’, it is freely available on the internet).

    So what was labelled ‘a scandal’ three years ago, is now understood to be nothing of the sort. This will be a relief to many professionals who have worked hard and honestly but found themselves scapegoated. It is felt to be a terrible betrayal by some families who have been convinced, and remain convinced, that their loved ones suffered as a consequence of poor or malicious care. www.bbc.co.uk/news/uk-wales-43962668

    It is a nightmare.

    We have to worry that people will be discouraged from working in a field which is already low in kudos. There has to be concern that patients will be denied effective palliative care and fruitless efforts to keep them alive will prolong or produce suffering and be wasteful of resources.

    I wonder if the ‘Choosing Wisely’ initiative of the Academy of Royal Colleges www.choosingwisely.co.uk/ can prove robust enough to support a calm and balanced resolution.

    Let us hope so.

    For the moment, I am more than uneasy with the immediate acceptance of the damning report on the care at Gosport War Memorial Hospital, though it will require some very brave people to raise the questions.

    In both these settings, the issues of time, resource and discipline to communicate honestly and openly with families and patients, and to record what is said and what is agreed and not agreed, emerge as basic. That is the first learning point for me.

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