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  • NICE work 22 January 2018 | Comments (0)

    22nd January 2018 | By David Jolley

    NICE has produced drafts of a revised guideline: Dementia – assessment, management and support for people living with dementia and their carers. The final versions will be published later this year. The present drafts are shared for comments and suggestions.

    There is a short version of 33 pages: www.nice.org.uk/guidance/GID-CGWAVE0792/documents/short-version-of-draft-guideline

    The ‘full’ version is 421 pages: www.nice.org.uk/guidance/GID-CGWAVE0792/documents/full-guideline-updated

    There are appendices A – P which include ‘I’ – 56 pages of references. There is an Economic Model which can be accessed and there is an Equality Impact Assessment.

    It is a massive and impressive piece of work. The guide is designed to be read by professionals, commissioners and providers and by people with dementia, their carers and families. The language is good enough to be understood by all of these but the volume of material is such that few will read it all but may access parts when coming up against particular questions.

    Over all it is remarkable for being unexceptional. It is to be welcomed.

    There are some points to make, using the short summary version as source:

    Having established the importance of dementia via its numbers and impact on individuals and statutory services, page three asserts: ‘Providing care and support (for people with dementia) is very complex’.

    This gives notice of an atmosphere of awe and furrowed brows, which seems to me to exaggerate the facts, almost to excuse failings in what is essentially a simple paradigm: people need help – the help required should be tailored to the individual, be flexible and change over time as needs change. Help will be needed throughout the remainder of life, and family and other carers may require support and therapy even beyond death of the individual.

    Page four emphasises the financial implication of individual cases, but most particularly the costs arising within health and social care services. The impression is that the burden of these costs weighs more heavily than the impact on the lived experiences of individuals and their families.

    From this, a transition to information about new, complex and expensive techniques which require examination of cerebrospinal fluid, fits uneasily. These techniques have been demonstrated but to hint that they can reasonably add to good clinical practice seems less than wise.

    Page five explains that when the committee feels something should be done, it will advise that this should be ‘offered’. Where they have doubts, the advice is couched as ’consider’. There are also activities which are damned as ‘should not’.

    Reference is made to key relevant legislation since the 2006 NICE Guidance on Dementia.

    NHS England (2015) Accessible Information Standard www.england.nhs.uk/wp-content/uploads/2015/07/access-info-upd-july-15.pdf

    Health and Social Care Act 2008 (regulated Activities) Regulations 2014 https://www.legislation.gov.uk/uksi/2014/2936/contents/made

    Department of Health (2014) Care Act 2014: statutory guidance for implementation www.gov.uk/government/publications/care-act-statutory-guidance

    Department of Health (2014) Positive and Proactive Care: reducing the need for restrictive interventions https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/300293/JRA_DoH_Guidance_on_RP_web_accessible.pdf

    Health and Social Care Act 2012 www.gov.uk/government/publications/health-and-social-care-act-2012-fact-sheets

    Mental Capacity Act 2005 www.legislation.gov.uk/ukpga/2005/9/contents

    There is no mention in this summary of the Law Commission’s report on DoLS, though this is clearly very relevant to the future of dementia care. www.lawcom.gov.uk/project/mental-capacity-and-deprivation-of-liberty/

    Person-centred care, together with supporting carers, is identified to: ‘underpin good practice in dementia care’. People with dementia and carers should be involved in decision-making and must be given oral and written information which will enable them to know their diagnosis and likely prognosis, their legal rights and responsibilities and details of care which will be made available to them from health and social care and what else is available locally from other sources. The phrasing includes ‘which….professionals …. will be involved in their care … and how to contact them.’

    This sounds fine. It will be received with joy by people with dementia and carers – but it is far from reality in many places and this is a matter which requires thorough exploration. It is quite inappropriate to identify this as an essential feature of good practice if organisation and economics place it out of reach.

    The section on Advance Care Planning (page 9) is good and also requires ‘early and ongoing opportunities for people living with dementia and people involved with their care’ to complete and iteratively review such plans. Ethically and pragmatically desirable but logistically unobtainable for most without major revision of current services.

    General recommendations on the processes of assessment, examination and investigation to identify treatable causes or contributions to symptoms, or the confirmation of a dementia, are sound. Where there remains some uncertainty, time is a powerful ally. Most uncertainties will be resolved over a period of weeks or months – with little or no detrimental impact on the course of illness or the life which can be lived. Turning to CSF examinations with ultramodern techniques seems less than reasonable outside the realms of research (p11).

    Paragraph 1.2.23 (p 12) says: ‘Only conduct case finding for suspected dementia as part of a clinical trial that also provides an intervention to people diagnosed with dementia.’

    It is difficult to be sure what this oblique reflection is about. In some circles it has been interpreted as an attack on the Dementia CQUIN www.england.nhs.uk/blog/alistair-burns-16/

    We would not like to lose this contribution to improvement in practice which began in general hospitals and has been adopted more widely. It has meant that people with dementia are now more regularly recognised before they get into more difficulties. This is a benefit to them, their carers and the statutory services. 

    Care Coordination: paragraph 1.3.1 (p 13) Says: ‘Provide people living with dementia with a single named health or social care professional who is responsible for coordinating their care’ and this is followed by details of what to do and assumes ongoing review and provision throughout life. As with the commentary on Person-centred care – we are pleased to see this advice, but know that many services do not achieve this and would say they have insufficient resource to do so.

    Perhaps this guidance from NICE and the revision of DoLS suggested by the Law Commission can make it happen. In similar mode the advice on transfer of information and accessibility of services will be helped by this legislation.

    The paragraphs on ‘Interventions to promote cognition, independence and wellbeing’ and non-cognitive symptoms (pages 15 through to 22) are sound and unexceptional. Much of that which is covered relates to medication.

    There is disappointingly brief reflection on other approaches: ‘Consider providing structured group activities’, ‘Consider a needs-based re-ablement programme’, ‘Check for and address other clinical and environmental causes’, ‘As initial and ongoing management, offer psychosocial and environmental interventions to reduce distress in people living with dementia’.

    These are important comments but are not given space which gives them appropriate weight when we look at the totality and balance of care, treatment and support which individuals with dementia and their carers can benefit from through their careers with dementia. The extraordinary gains in wellbeing achieved by music, dance and other arts deserve mention and promotion.

    The importance of general health and the presence of comorbidities is properly addressed, as is the issue of pain, which is highlighted.

    There is one brief paragraph (1.9.1) about the hazards of general hospital admission and an important paragraph (1.12.1) addressing moves between care settings (something else which will be improved if the Law Commission’s suggestions on a replacement of DoLS are acted on). Yet overall there is little about the structure and dynamic s of services, the balance of numbers and modes of care available at home, in hospital or in care homes. Yet there are paragraphs advising on the education and training of staff. These are sound, though how realistic it is to expect that the standards will be achieved in many settings has to be doubted.

    Carers should be offered an extensive range of education, information and support. This is on the basis that these measures are known to be well received and helpful. How far services are resourced to deliver them has to be questioned.

    Palliative Care is rightly given some prominence: ‘From diagnosis offer people living with dementia flexible, needs-based palliative care that takes into account how unpredictable dementia progression can be.’ So again we are faced with the requirement to identify individuals with dementias early and to follow them up competently throughout the following years to death and beyond. We very much agree with that. We know it is what should be done. The challenge is to make it happen for everyone.

    There is recognition of the special needs and difficulties of younger people who develop dementia and their families, and of people with learning difficulties. There really should be something about people who have limited English and/or live within cultural situations which make understanding and management of dementia more difficult.

    The section on implementation places a baseline assessment against the recommendation as third in its list of actions. It is written as if for an individual organisation but really the review and action plans which follow will have to be across organisations and authorities and must include people with dementia and carers. But the revised guidelines do give us all a reasonable template on which to make measures and plan improvements – taking into account the reservations which we have listed here. Our comments might help produce an even more helpful template.

    Research?

    Suggestions for more research on:

    Case Management

    Staff Training

    Anticholinergic burden

    Delirium/dementia

    Care and support planning

    For me the only thing worth researching is how to get honest to goodness decent services going again, and available to all those who need them. It is not something which will be done by one or a million RCTs.

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    15th January 2018 | By David Jolley

    John R pointed to me a report carried by The Telegraph announcing Pfizer’s decision to pull out of Alzheimer’s research. Massive investment over many years has produced nothing worthwhile.  http://www.telegraph.co.uk/science/2018/01/08/hunt-alzheimers-cure-suffers-heavy-blow-pfizer-pulls-research/

    Within days The Guardian was confirming negative findings from the latest Lundbeck trial: https://www.theguardian.com/society/2018/jan/09/alzheimers-setback-as-promising-drug-shows-no-benefit-in-clinical-trials-idalopirdine

    We reflect on the debate at the Dementia Congress in Doncaster last November – this concluded that more should be spent on improving care and preventative strategies – less on the largely unproductive biological research. There is congruence here.

    A dreadful headline in the Manchester Evening News tell of horrifying profiles of the regime in one ‘Care’ Home. http://www.manchestereveningnews.co.uk/news/greater-manchester-news/care-home-where-pensioners-were-14142279

    We note the report that Lady Lucan is believed to have killed herself for fear of developing Parkinson’s Disease.

    We are encouraged to find additional research confirms the positive benefits of time with nature: https://inews.co.uk/news/health/urban-city-walk-trees-birds-mental-health/

    But the thing which caught my eye was the headline: ‘Excitement as trial shows Huntington drug could slow progress of the disease’: https://www.theguardian.com/science/2017/dec/11/excitement-as-huntingtons-drug-shown-to-slow-progress-of-devastating-disease

    This report draws attention to work by Professor Sarah Tabrizi and colleagues at University College London. It made me go back and revise my memory of Huntington’s disease – otherwise and originally Huntington’s Chorea.

    This condition has been known by descriptions certainly to the Middle Ages and maybe before. But it was 1872 that George Huntington, a physician in Pennsylvania, wrote the classic paper which captured its clinical features and its inheritance pattern as a dominant gene abnormality. He traced families in America who were all descended from a family which had come to Boston in the 1660s. They came from the Suffolk village of Bures. Bures is not far from Colchester, where I worked as a student. It was there that I first heard about the disorder and met a patient.

    The clinical picture is of a neurodegenerative disorder which affects the sexes equally and usually shows itself in middle life, though onset in later life or early adult life is also known. Huntington described the onset of choreiform movements, loss of coordination and balance. In addition, subjects experience deterioration in cognition and develop a dementia syndrome with frontal lobe features. Psychiatric symptoms, particularly irritability are common. A notable feature is a much-increased suicide rate. Loss of weight, endocrine abnormalities and sleep disturbance emerge as the condition progresses. Eventually subjects will become bedfast and die after a period of maybe ten years or more, of inanition or intercurrent infection.

    More recent studies have found that the gene fault is located on the short arm of chromosome 4. It is now understood that the flaw is at the Huntingtin locus: this codes for the protein huntingtin which is essential for nerve cell growth and maturation. A sequence of the nucleotides Cytosine, Adenine and Guanine (CAG) in the DNA of the chromosome caries the information to form this. There are repetitions of the CAG sequence needed to produce healthy huntingtin, but in Huntington’s Chorea the number of repeats is excessive and results in the production of a toxic version of huntingtin. Normal people may have up to 36 repeats of the CAG sequence. 36 to 39 repeats make the emergence of Huntington’ Chorea possible and a greater number of repeats make it inevitable. The larger the number of repeats, the earlier the age of onset of the condition.

    It has been possible to test for the presence of the abnormal gene for some years. This poses complex ethical and practical issues for individuals, families and professions. These have been well reviewed by Professor Tabrizi and her colleague Marianne Novak http://www.bmj.com/content/340/bmj.c3109

    The breakthrough is the production of a synthetic DNA strand Ionis-HTTRx which binds to mRNA, which would inform the production of the rogue huntingtin (like Lego!), and neutralises it. Research involving treatment of 46 individuals, who were demonstrating early signs and symptoms of Huntington’s Chorea, across the UK, Canada and Germany has confirmed that levels of huntingtin in their cerebrospinal fluid (CSF) was reduced. The substance has to be injected into the cerebrospinal space at monthly intervals – so it is a highly skilled activity and not without some risk. Thus far it is not possible to say whether the change in concentration of will achieve worthwhile clinical changes. It would be an expensive mode of treatment.

    Similar research has led to the establishment of effective treatment for other genetically programmed illnesses: spinal muscular atrophy www.ncbi.nlm.nih.gov/pubmed/28884620 and retinitis pigmentosa http://ir.sparktx.com/news-releases/news-release-details/fda-advisory-committee-unanimously-recommends-approval are examples.

    Costs are prohibitively high – of the order of one million dollars per individual – and treatment techniques are complicated. It may be that we are making discoveries which show what can be done – but it seems the ethics and economics of such treatments, if they were to be prepared for more common conditions such as Alzheimer’s disease of Parkinson’s disease, will mean that they are not feasible.

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    Christmas 2017 08 January 2018 | Comments (0)

    20th December 2017 | By David Jolley

    Tuesday and Thursday in the week beginning December 11th were special days with carol services at Bowdon Vale for Dementia Conversations and then older people and a group with Learning Difficulties, who come to a regular pop-in. There were more than 30 people at each occasion.

    The chapel at Bowdon Vale was opened 1883, housing a congregation which had begun to meet at a cottage in the village from 1858. As I understand it, Bowdon had few residents until the mid-1800s when the Earl of Stamford sold land to rich merchants of Manchester, who built mansion homes on the sandstone ridge which provided clean air and inspiring views over Cheshire. The Vale from the west of the ridge to the shore of the Bollin River had been home to brick yards – still celebrated in street names – but few people. It became the place where smaller houses were built which would accommodate the gardeners, coachmen and washing women who serviced the mansion families.

    The chapel was built on land donated by a wealthy architect and his family. It is of a simple design but has been modified over the years by the addition of a school room, the inclusion of heating and lighting, though it still remains without a telephone line!

    Services in the chapel benefit from the atmosphere generated by its wooden pews (original), a wooden pulpit – salvaged from another chapel which closed 50 years ago, an alter rail inherited from another chapel, an organ (not the original pipe organ but still providing good sound). It is a four dimensional scrapbook of life in Methodism here and nearby.

    One lady compared the feeling with that at another nearby church which has lively activities but no special place for worship. ‘This feels like real church’.

    Ros, our minister, involved people by as the nativity story unfolded with short readings and the popular carols. Graham’s playing carried the tunes sympathetically so that there was time for reflection as well as cheer. The candles of the Advent Ring were lit one by one by other members in attendance. We were surely part of this.

    Food, fellowship and games completed these afternoons. 

    We have an eye to continuing Conversations next year – starting with the newly fascinating research of possible treatment for Huntington ’s chorea: http://web.stanford.edu/group/hopes/cgi-bin/hopes_test/huntingtin-protein-and-protein-aggregation/

    Next meeting of Dementia Conversations will be January 9th 2018, starting at 2pm – Come along if you can.

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    18th December| By David Jolley

    The week has been dominated by weather – cold and frosty with some snow, windy so that banners have to be taken down, and rainy between times.

    But on Monday we walked – all-be-it with reduced numbers.

    Tuesday and Thursday were special days with carol services at Bowdon Vale for Dementia Conversations and then older people and a group with Learning Difficulties, who come to a regular pop-in.

    The chapel at Bowdon Vale was opened 1883, housing a congregation which had begun to meet at a cottage in the village from 1858. As I understand it, Bowdon had few residents until the mid-1800s when the Earl of Stamford sold land to rich merchants of Manchester, who built mansion homes on the sandstone ridge which provided clean air and inspiring views over Cheshire. The Vale from the west of the ridge to the shore of the Bollin River had been home to brick yards – still celebrated in street names – but few people. It became the place where smaller houses were built which would accommodate the gardeners, coachmen and washing women who serviced the mansion families.

    The chapel was built on land donated by a wealthy architect and his family. It is of a simple design but has been modified over the years by the addition of a school room, the inclusion of heating and lighting, though it still remains without a telephone line!

    Services in the chapel benefit from the atmosphere generated by its wooden pews (original), a wooden pulpit – salvaged from another chapel which closed 50 years ago, an alter rail inherited from another chapel, an organ (not the original pipe organ but still providing good sound). It is a four dimensional scrapbook of life in Methodism here and nearby.

    One lady compared the feeling with that at another nearby church which has lively activities but no special place for worship. ‘This feels like real church’.

    Ros, our minister, involved people by entrusting characters from the model nativity scene to them – and then to bring them to repopulate the model as the nativity story unfolded with short readings and the popular carols. Graham’s playing carried the tunes sympathetically so that there was time for reflection as well as cheer. The candles of the Advent Ring were lit one by one by other members in attendance. We were surely part of this.

    Food, fellowship and games completed these afternoons – But we have an eye to continuing Conversations next year – starting with the newly fascinating research of possible treatment for Huntington ’s chorea:http://web.stanford.edu/group/hopes/cgi-bin/hopes_test/huntingtin-protein-and-protein-aggregation/

    The final carols of this week have been sung on John Leigh Park – The fourth in an annual series of ‘Carols in the Park’ which is conducted by the talented ministry and music group from Altrincham Baptist Church. This is a short service of carols linked by the Christmas story and reflections on our lives of privilege and responsibilities toward others. We celebrate in the park which is a shared space where people of all ages and status come together for play, exercise and relaxation. This being the park’s centenary year we were especially keen to end the year in this way. The weather had been hard through the week – days frozen, days drenched and the forecast for Sunday afternoon was of rain, getting heavier and worsened by a strong wind from the west. It looked doubtful that we could put on the show, for people would be out in the weather for several hours setting up before the short event. It feels like a minor miracle that the forecast modified, the temperature rose, the rain stopped and the wind stayed calm until 5.20pm. Despite the forecasts about 200 people – all ages but well wrapped up – came along with cheerful faces and twinkling eyes. Children took the microphone for ‘Away in a Manger’, we had warm drinks and mince pies.

    Some things are ageless. It seems they can go on.

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