Tag Archives: carers

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Carers are like gold dust for living better with dementia

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According to Carers UK in May 2014, the 2011 Census figures for the UK showed an 11% rise in the number of carers since the last Census in 2001 – increasing by over 620,000 to 6.5 million in just 10 years. Under this definition, “carers” provide unpaid care by looking after an ill, older or disabled family member, friend or partner.

I recently found myself in such a caring rôle, unexpectedly so. Despite my medical training, or possibly even because of it, I found myself wholly unprepared for it. I must say that, like most carers, it brought me even close to the ‘care recipient’ in question; it was incredibly hard work, physically and emotionally exhausting, but very (non financially) rewarding.

When I was rung up by the North London Carers’ Society which provides support to people such as me, I remember being surprised being referred to as a ‘carer’. This was not out of shame, mind you. I just think that, like many things in life, I had not expected this ‘to be me’. But, as I do keep reminding myself, absolutely anything can happen to anyone at any time.

In my ‘day job’, I am an unpaid analyst of policy both nationally and internationally in dementia. This does not bring me to any conferences. I note recently a flurry of people with lived experiences complaining about such conferences, but as such I would relish the chance to be invited to one personally.

But it has struck me how it would be foolish to try to airbrush out of the discourse policy specialists and carers in discussing living better with dementia. And I feel certain things have to be said for sake of clarity.

A general longstanding principle about wellbeing is that somebody else’s wellbeing can depend upon your wellbeing. This means that if you’re physically, mentally or socially content, this will rub off on somebody close to you. The converse also happens to be true – if you’re physically or emotionally exhausted, this will rub off on the closest to you too.

Similarly, the legitimacy of your human rights depends on the legitimacy of others to exert their human rights. The human rights of a person with dementia and a carer are entirely complementary, in the same way that my freedom of expression might conceivably impact on your right to privacy.

But there are other important drivers for not ignoring the carers.

In England and Wales, since 2009 particularly, on the publication of the seminal report of Prof Sube Banerjee on the need to decrease the number of inappropriate prescriptions for anti-psychotics, and as a stated policy aim in the national strategy ‘Living well with dementia’, there has been huge success in this area of policy. A large part of this has been for professional staff to seek out the reasons why somebody might be agitated or anxious, and providing person-centred care? This is now being borne out by much meticulously conducted research. A person providing care, whatever the official job description, is a ‘carer’. The clue is very much in the name.

A strict interpretation of the jurisprudence would provide that only the person living with dementia could or should make a decision, and that international human rights in fact trump a domestic notion of legal capacity. The reality is that some people with dementia which has far progressed are unable to communicate their decisions, and this is particularly problematic if this lack of communication impacts on health and wellbeing.

It would be fine to argue that in an ideal world everyone can make their decisions in tricky situations known in advance, but the reality is that you cannot possibly anticipate every scenario in advance. Ideally, there’s a school of thought, however, that everyone should have some form of advance directive; for example in anticipation of a force majeure event such as a road traffic accident? And the further reality is that many people in England and Wales, and presumably other jurisdictions, with dementia have not actually been given a formal diagnosis of dementia. Many people enter hospital without a diagnosis of dementia only to be given one, and then can’t even be deemed to be safely discharged to their own home. They often can from that point go to a residential setting, or indeed die in hospital. But the law on capacity in England and Wales is, diplomatically put, a “good broad brush attempt”; we do know, for example, that in certain types of dementia a person can meet the legal test for capacity, but be making wildly abnormal types of decision; an advance direction might mitigate against this problem.

Carers, however so defined but invariably sons, daughters, husbands or wives, have a crucial further rôle to play on the admission of a person with dementia to a care setting such as hospital or hospice. Knowledge and information from carers can be invaluable in shared decision making about care; and it is impossible to know what the background cognition of anyone is without asking somebody close to him or her.

At one extreme, I have seen carers talk on behalf of people with dementia with them present; or carers ‘hog’ bulletin boards. But at another extreme, a discourse without carers is not adequate either. This is literally a case of practising what you preach, if you indeed believe that ‘no decision about us without all of us‘.

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Enhancing health and wellbeing in dementia: care homes and care at home

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I am very honoured that the main foreword will be by Prof Sube Banerjee, Chair of Dementia at Brighton and Sussex Medical School.

Sube is very influential in English dementia policy. His contributions have been outstanding. Indeed, he co-authored the original English dementia strategy ‘Living well with dementia’ in 2009 on behalf of the Department of Health.

I am very honoured that the other two forewords are to be by Lisa Rodrigues and Lucy Frost, who have substantial interest and knowledge in dementia.

The book will be a timely look at the evidence, with many of the topics being rehearsed elsewhere in policy, such as the NHS Five Year Forward View, or the NICE guidance on dementia (currently in development).

This book is likely to be published by Jessica Kingsley Publishers in the end part of 2016.

 

Chapter 1 : Overview

I will draw on the existent literature to consider what has emerged about a consensus about ‘care pathways’ for dementia, in particular the events which can lead up to “crises” or transfer to a residential settings. There has not been an adequate look at the work up in primary care for dementia, and I will consider how domestic policy might be harmonised with international guidance. In the presence of an evidence base for dementia advisors and dementia support workers, I will consider the potential of signposting to services. I will re-visit the evidence base for prevention of dementia, and the current evidence base for the use of cholinesterase inhibitors and other drugs, but will concern myself with the impact of human rights, disability and sustainable communities in current thinking. The largest part of this chapter will be considering quality of care, and novel approaches such as integrated personal commissioning and the personal medical care home. Throughout the book, there will be a detailed discussion of the need to promote the health and wellbeing of carers, both paid and unpaid, and to consider coping strategies which might help through clinical specialist nurses and social care practitioners, and other colleagues.

Chapter 2 – The caring environment and culture

This chapter will explore evidence for the components of the built environment and sensory stimulation and enhancing person and relationship centred care which enhance health and wellbeing across care settings. The main emphasis will be on considering what change might be needed, and under what leadership from all stakeholders, to ‘improve’ services, howeverso defined, and the rôles that risk and innovation might play in the future. If there are truly ‘no more throwaway people’, this chapter will also include how the social capital from people with dementia and carers might be consolidated to build more resilient communities co-designing research and services.

Chapter 3 : Physical health and aspects of pharmacy

Enhancing physical health is essential across all different care settings. This chapter will review the current evidence for management of falls, frailty, pressure sores, urinary tract infections, and hip fractures, as well as aspects of nutrition and metabolic medicine, from a multidisciplinary perspective, emphasising the role for allied health professionals. Aspects of prescribing will also be considered, including overuse, underuse and inappropriate use of medications, and what evidence base has thus far built up in the area of ‘therapeutic lying’ and its ethical implications.

Chapter 4 : Wellbeing and mental health

This chapter will consider aspects of mental wellbeing, including self and identity, and awareness and insight. Its will also consider various other issues to do with mental health, including agitation, apathy, depression, and sleep.

Chapter 5 : Cognitive stimulation and life story

A substantial evidence base has built up concerning non-pharmacological approaches to dementia. This chapter will consider diverse approaches including cognitive stimulation, reminiscence work and cognitive neurorehabilitation. This chapter will also consider the evidence base for ‘life story’ and how it has been approached across various care settings.

Chapter 6 : Oral health and swallowing difficulties

This chapter will consider a much neglected area of health and wellbeing, relevant to holistic health and wellbeing, that of oral health and disease. Current important issues in this field will be considered, including dysphagia and mastication, as well as possible areas of interest for the future.

Chapter 7 : Activities

This chapter will evaluate critically what exactly is meant by the term ‘meaningful activity’, and consider whether reframing of the narrative, such as promoting creativity’ might be more helpful. The chapter will discuss the importance of communication across this area, but consider specifically the arts, drama and theatre, dancing, gardening and outdoor spaces, humour, and music.

Chapter 8 : Spirituality and sexuality

Identity and relationships have emerged as key themes across various conceptualisations of personhood, including of course Tom Kitwood’s. This backdrop will be presented at first, before considering key issues in sexuality, spirituality and religiosity, not only in life after a diagnosis, but also for enhancing health and wellbeing across all health and care settings.

Chapter 9 : Research, regulation and staff

Research and regulation are examples of ‘work in progress’. This chapter will consider the key directions of research in the dementias, both qualitative and quantitative, across various care settings. This chapter will also consider specific areas of interest, including barriers to drug development including regulation. The overall area of regulation will be considered in terms of proportionality, and celebrate areas of good practice. The chapter will also consider areas which also are of utmost importance such as abuse and neglect, and adult safeguarding in general. The chapter will also include a discussion of how the health and wellbeing of staff might be promoted better to meet the needs of people with dementia and carers.

Chapter 10 : Care homes in integrated care

There have been various fashions and fads in thinking about ‘integrated care’, and part of the problem has been the plethora of different perspectives and models. This chapter will adopt a practical perspective of people living with dementia and carers having their health and wellbeing attended to in the right place, right way and the right time, and consider various aspects concerning this. Consequently, the discussion will emphasise advance care planning, attending hospital, admission and re-admission, avoiding hospitals, care transitions, case management, the “future hospitals” initiative from the Royal Colleges of Physicians, improving patient flow, intermediate care and discharge, liaison psychiatry and CMHTs, specialist clinical nurses including Admiral nurses, and “virtual wards”.

Chapter 11 : Independence

This chapter will consider some important diverse areas which intend to promote independence, their progress and impact in overall policy. These include electronic medical and care records, “individual service funds”, and reablement. This chapter will also consider potential opportunities and risks from personal genomics and personalised medicine.

Chapter 12 : Palliative care and end of life care

It is beyond dispute that palliative care and end of life care are essential components of promoting health and wellbeing in people living with dementia and carers. Person-centred care, maximising continuity of care, is fundamental. This chapter will consider the special features of this approach which are very important, and also consider why there has been a reluctance amongst some to consider dementia as a terminal illness. The chapter will also consider the significance of grief, and also consider a possible notion of ‘pre-grief’.

Chapter 13 : Living at home

The first twelve chapters are very relevant to the final chapter on living at home. Whilst much of the media attention is on care homes and nursing homes, or residential settings in general, there is remarkably little focus on living at home, including living at home alone, despite enormous interest in this amongst the general population. This chapter will consider how this approach may have evolved from the philosophy of ‘successful aging in place’, and consider how specific home environments might be enhanced including extra care environments. This chapter will include discussion of, specifically, community nursing including Buurtzorg Nederland, day and respite care, self management. telehealth and technology, and smart homes. The pivotal role of social care and social work will be emphasised throughout.

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We need to define what we mean by 'post diagnostic care' for dementia

Let me lay my cards on the table: we need now to have a national or even local debate what “post-diagnostic support” for dementia actually means.

This discussion shouldn’t be between the same old same old; we need some fresh faces and fresh voices to help design a system fit for purpose for those who are diagnosed with dementia in England.

So far, there have been in effect two Prime Minister’s Challenges (2012 and 2015) which have highlighted the need for more research, the importance of a timely diagnosis, the essential nature of “post diagnostic support”, raising the profile of dementia with “Dementia Friends”, issues of risk reduction, training and hints at an enhanced rôle of primary care, not just GPs, in offering proactive care and support to promote wellbeing. This was a tall ask.

In March 2015, the Department of Health published ‘The Prime Ministers Challenge on Dementia 2020’ which details the vision for dementia care and support in the future. The document places importance of diagnosis, but also post-diagnosis support and high quality services for people with dementia.

 

 

I asked the ‘expert panel’ at the UK Dementia Congress last week in Telford at what dementia policy should be formulated; we’d heard the previous day comments made about approaches at country-wide level, as well as local commissioners making decisions which are best for the local population, as well as personal budgets. The somewhat idealistic objection to personal budgets is that it masks rationing of resources at an individual level, and do not necessarily promote the most clinical effective intervention, at a time when resources have become scarce through deliberate underfunding. I did the personal budgets debate is incredibly complicated, and I reviewed what I could in my current book ‘Living better with dementia: good practice and innovation for the future’.

The truth is : people with dementia are often still sent out in a wilderness following diagnosis, some even lost to follow up in England, and nationally it is estimated one third of people still do not have a diagnosis. There have been even calls for a ‘right to diagnosis’. It is estimated that one quarter of acute hospital beds are occupied by people with dementia, and there is increasing concern in English policy about whether the health and wellbeing needs, met and unmet, of people with dementia and carers are being addressed in the right place and right time.

There’s about 430,000 people living in care homes, and recent studies suggest that 80% of people in care homes have dementia. There is evidence to suggest that prescription of neuroleptic drugs is higher in this group. This is not solely England’s problem, but is an artifact, arguably, of the successful medicalisation and globalisation of a dementia strategy. There is now a huge interest in developing dementia care in post-diagnostic settings, whether at homes or in care homes. I see this work as completely continuous with the Prime Minister’s Dementia Challenge, and NHS England, CQC and Care England are key players.

The Care Quality Commission published an incredibly influential review of care services ‘Cracks in the Pathway’; that there is more good care than poor care in the care homes and hospitals that their inspectors visited, but that the quality of care for people living with dementia varies greatly. The report found that it is likely that someone living with dementia will experience poor care at some point while living in a care home or being treated in hospital which is unacceptable and cannot continue. People living with dementia, their families and carers have every right to be treated with respect, dignity and compassion. This of course is entirely consistent with a ‘rights based approach’, giving due prominence to the social model of disability, and promoted in the recent MHF document, “Dementia, rights and social model of disability.”

Care England’s perspective appears to be that social care and health services should be measured according to the difference they make to the lives of people with dementia. In particular it feels that commissioning should become more personalised and outcome focused through the use of increased numbers of personal budgets. The strand of policy of personalisation is a longstanding one, across all major governments in England. It was advanced in the Care Act (2014), and there has been a quietly-voiced assumption that the unified budget might become the final common pathway of health and social care integration. The political will, despite a Conservative government in 2015, is though somewhat nervousness of privatisation in places, given the considerable political backlash against the Health and Social Care Act (2012).

NHS England has led a successful programme of work across England to increase the rates of diagnosis for people with dementia as part of the Prime Minister Challenge on Dementia 2012 – 2015. This work has increased national diagnosis rates so that almost two thirds of people with dementia now have a formal diagnosis. It is now perceived that NHS England wish to turn their focus onto post-diagnostic support, but the real evidence for this currently thus far is somewhat mute.

In research, there are almost parallel universes in existence. On the one hand, there’s a goal for disease modifying drugs or symptomatic treatments by 2020. On the other hand, a systematic review of training manuals for person centred dementia care identified more than 200 available manuals, only four of which had been evaluated in clinical trials with evidence they conferred benefit to people with dementia. It is hard to tell the extent to which the transformation funds for new pharmacological therapies will elicit drugs which are inexpensive to get past NICE and to be made widely available in the NHS. It’s pretty likely that pharmacological treatments for the dementias will come in a piecemeal manner, though there’s a danger that this strand of research suffers from a bias towards Alzheimer’s disease and frontotemporal dementia. Time will tell on whether drugs in the near future have a meaningful rôle to play in enhancing the wellbeing of people with dementia past the point of diagnosis.

It’s pretty clear that leadership for dementia services needs to be improved system wide. I feel that regional ambassadors and working groups are a great way of seeing views filtered into national practice, as Scotland has shown the way. Research and spreading of good practice in dementia care should be encouraged. This is especially an issue given there are clusters or pockets of good practice, and part of the battle is trying to spread knowledge of what good practice in care homes looks like.

It should be recognised that everyone in the UK has a universal entitlement to healthcare services, currently some people living in care homes are being charged to access services. With the integration of health and social care, no party will be able to avoid long-term the issue of funding. General taxation is by far the most equitable way of funding dementia services. Implementation of private insurance mechanisms would be particularly disastrous for dementia given increasing ability to identify genes determining dementia, and, without the protection of genetic information non-discrimination as in the US, England will need to be vigilant if it pursues avenues in genomic and personalised medicine at some later date. It will be difficult to reconcile how to bolt on a means-tested social care system onto a universal system, but the somewhat arbitrary nature of what is health and what is social care has dangers at a personal level for those diagnosed.

Nonetheless, it seems intuitive that health and care services should be aligned around the person, but this is an altogether simplistic view when one considers that the wellbeing of a person with dementia is intimately linked to the wellbeing of a carer and that a failure to cope from a carer can have severe consequences for the health and wellbeing of a person with dementia. Ultimately, it helps to conceptualise that care should always be person centred and integrated, in that people with dementia need to be able to move in and out of the right care settings with relative ease. Care planning is facilitated by that diagnosis of dementia, and care plans should be personalised, able to be shared and ideally electronic. Discussions about Advance Care Planning should be prominent from a very early stage, and two separate conversations should at some stage take place about when to engage palliative care services and when palliative care should commence. The problem with the term ‘end of life’ care is that it can be difficult to predict, especially for dementia, when end of life precisely occurs. When a bereavement does occur, the post-diagnostic support must have a way of helping the friends and family through this difficult time.

Ideally, all dementia diagnosis should be high quality and follow NICE guidelines. It is worth stating the obvious as the alternative is a huge amount of incorrect diagnoses, e.g. dementia which is in fact minimal cognitive impairment, or young onset dementia dismissed as “mid life crisis”. We therefore need some scrutiny of the way dementia diagnoses are validated across the system, and whether the workforce should include members of other specialties in addition to psychiatry or care of the elderly as ‘gatekeepers’ for the diagnosis, such as neurology, clinical psychology, general medicine or specialist nursing. There are especial difficulties with the efficacy with which the diagnosis is made, such as in people with prior learning difficulties or BAME populations. Diagnostic tools need to be redeveloped for people already in care homes who may have dementia. A diagnosis of dementia in residents of care homes, where clinically appropriate, is absolutely essential to ensure high quality post diagnosis support and care planning. All diagnosis should involve, as far as possible, the person with suspected dementia, their family and the care home staff. This is possibly the biggest caveat about the term ‘person-centred’, in that care should take in the views of friends or family (who are often unpaid carers), and shared decision making amongst all including professionals is important.

A clear narrative should be developed regarding the benefits of diagnosis – from the perspective of the person, their family, care staff and care providers. Even years after national campaigns such as ‘Dementia Friends’, it is not uncommon for the criticism to be voiced ‘but nothing can be done’. The language relating to dementia diagnosis/post diagnosis support should be made clearer and less intimidating, and there should be, I feel, systematic research into the fear of the diagnosis and subsequent symptoms of people given the diagnosis of dementia. I think there’s a legal conversation to be had at some stage after diagnosis, perhaps in the ‘life planning’ phase of post diagnostic support – this could include a discussion of wills, advocacy and power of attorney.

I think there’s a lot to be said for the notion that ‘post diagnosis support’ should be renamed to life planning (immediate) and care and support (medium to longer term) for people with dementia. There should be additional system navigation support for people diagnosed with dementia and their carers – clear outline of roles and responsibilities. I have written about whole person care in my current book ‘Living better with dementia: good practice and innovation for the future’. The trials and tribulations of Barbara Pointon and Malcolm’s care pathway are well known.

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Commissioners need to better understand the vital role of the voluntary sector in supporting people with dementia for services such as dementia cafés. There should be more trained advocates for people with dementia which will in turn support system navigation. GPs need greater support to understand local support and services available for people with dementia and their carers, and need to work closely with organisations such as the Dementia Action Alliance.

Standardised personalised commissioning for people with dementia could be increased through use of personal budgets, but I have explored at great length the opportunities of ‘choice and control’ in my first book ‘Living well with dementia: the importance of the person and the environment’; and subsequently personal budgets in my second book. Budgets are of course not the only way of addressing needs; people with dementia also have legal rights afforded to them under a range of international and international instruments. Shared records and integrated IT across social care and health would be a massive advantage for the development of integrated health and social care; the current Conservative administration has promised an electronic NHS by 2018, but one waits to see whether this promise will hold up.

Care home staff should have equal access to training and development opportunities as health care staff. I think there have been great strides in education of the workforce, including the new skills, education and training framework and Care Certificate from Skills for Care. I do worry about care homes being perceived as ‘outside of’ the community, and this might explain to some extent why a minority of care homes really do provide really bad care. Dementia friendly communities could have an increasingly important role to play. Care homes should become key parts of the community.

There needs to be greater definition of what makes ‘dementia friendly communities’ inclusive or accessible. Additional housing for people with dementia should be planned – better adaptation means more dementia friendly. And the same holds for transport. People with dementia should be paid consultants in the design of such services; I agree in co-production, but I do not condone exploitation. Valuing people with dementia and carers through paid work which is service-related, I do believe, is now a must for all levels of engagement and empowerment.

Greater investment should take place in services that prevent hospital admission and enhance discharge. People with dementia are very often living with other co-morbidities, and anticipating illness and disease must be fundamental to organising health and social care services. Adult social care has a pivotal rôle to play in upholding key principles of social justice, fairness and equality; as well as promoting wellbeing in the best traditions of Tom Kitwood. Perhaps health and wellbeing boards should be incentivised to integrate social care and health commissioning for people with dementia, or NHS England could ultimately detach itself from the activity-based tariff system which potentially promotes illness and fixing it towards a whole person-tariff to promote wellbeing.

Finally, I feel there are obvious gaps in England’s policy and strategy for dementia. “Achieving world class cancer outcomes: a strategy for England for 2015-20” from the Independent Task Force/Cancer Research UK was a massive advance earlier this year. I have no wish to dismiss the important role of dementia advisers and dementia support workers, but the harsh truth we are increasingly expecting people to signpost to rapidly disappearing services (in the name of austerity). Even specialists in cancer feel that they have progressed as far as they would have liked, but there personalised care plans and clinical specialist nurses are more accepted in the framework of national policy and debate. I think, as long as we do not plug this gap in system provision, and the benefits of clinical nursing specialists are well rehearsed elsewhere, England will not be in a position to produce a credible care pathway for dementia. Beyond the loud rhetoric, this would be a massive tragedy for people with dementia and carers.

 

 

 

 

 

 

 

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Dementia friendly supermarket checkouts are offensive and should cease now

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There are many burning issues in English dementia policy. One is mitigating against a high number of low quality and unreliable diagnoses of dementia due to poorly trained staff and inadequate resources in the system overall. Another is the poor coordination of care following diagnosis, due to the haphazard partial and inadequate roll out of anything appearing like integrated or whole person care.

The implementation of dementia friendly checkouts is yet another example of English policy having taken route which appears to have as its objective enhancing the brand profile of contributors from the voluntary sector, rather than genuinely enhancing the quality of life of people with dementia or carers. These are checkouts with huge banners with the word ‘dementia’, and literature from a particular source explaining about dementia.

How this situation has arisen is easy to explain relatively, however. In the name of ‘dementia awareness’, people have clearly abused the well meaning intention of ‘Dementia Friends’. Public education of dementia was desperately needed in the UK, is a global aspiration, and was indeed signposted in the 2009 English dementia policy document.

The 2009 English dementia policy document, the only five year strategy to date from the Department of Health, was published by the Department of Health. It was called ‘Living well with dementia’. There have been piecemeal policy documents annually, but it is recognised that the follow up to this five year strategy has not been published yet.

Unlike in cancer, there is no worked up care pathway. Cancer Research UK has made great strides in producing such a document for cancer. Cancer, like dementia, is an important long term condition where timely diagnosis, and encouraging people live to better is a priority. Cancer benefits from some effective medical and surgical treatments which not only have an effect on symptoms but on disease progression.

Justice delayed is justice denied. In cancer, it is well known that the provision of clinical specialist nurses have vastly improved the wellbeing of patients particularly in end of life care, such as from Marie Cure or Macmillan. There is no such provision of such nurses in dementia. Currently Admiral nurses, provided by Dementia UK, are finding it tough to get commissioned despite widespread demand. The lack of promotion of them in recent policy documents is not justified given the huge literature for them proving beneficial outcomes. They should be in the second English dementia strategy which has been delayed without any explanation. Justice delayed is justice denied.

The UK instead is focusing on ‘dementia friends’. How the number of Dementia Friends suddenly shot up from 700,000 to 1 million is a bit of a mystery, save for the fact that this increase in numbers happened to coincide with an online registration exercise. The danger of course was that people were using ‘Dementia Friends’ as a tickbox exercise merely.

Another indication that a tickbox mentality was being applied to ‘Dementia Friends’ was the large numbers of people, including commissioners notably, who kept on referring to the provision of information sessions as ‘training’. It is categorically stated in all official communications from the Alzheimer’s Society that it is not training. The policy reason for this is that nobody responsible wants to promote inadequate training for dementia care settings, where great strides have instead been made for example in the development of the ‘care certificate’.

The ‘Dementia Friendly’ checkout is striking in the context of the worldwide aims of dementia friendly communities. Supportive communities, howeverso defined, are meant to be inclusive and accessible to all. They are meant to be non stigmatising.

One of the aims of ‘Dementia Friends’ is indeed to see beyond the diagnosis. People are therefore not labelled by their diagnosis. It would be hard to conceive of a supermarket queue for ‘Learning difficulties’, ‘Depression’ or ‘First episode psychosis’.

When Mick Carmody or Kate Swaffer, both leading members of Dementia Alliance International (the only peer group of people living with dementia internationally and peak body), get told, “But you don’t look as if you’re living with dementia”, they have been known to respond, “That’s very interesting – but do tell me, what does a person living with dementia look like?”

It is actually very rare for someone with dementia to be living only with dementia. Co-morbidity is common. If you had dementia and depression, which queue would you join? The dementia friendly queue or the depression friendly queue?

When I was at the Alzheimer’s Disease International conference in Australia earlier this year, one of the speakers asked all people with dementia to stand up. Citizenship for people with human rights is a major drive for policy worldwide, and a principle aim of advocacy based on human rights is to protect people with dementia and carers against degrading treatment. This has been enshrined legally in some form or other since Roman times.

Asking people with dementia to stand up in a theatre is making a spectacle of people’s living in an undignified manner. Kate Swaffer, Co-Chair of Dementia Alliance International, even mentioned in her plenary speech how offensive it was.

It is highly unlikely that people living with dementia want to ‘out’ their diagnosis in a shopping queue, when many will be wanting to go about the life as normally as possible. Could you imagine the tannoy announcement, “Will all people with Alzheimer’s disease go to checkout number 9 please?”

As it happens, the vast majority of people living with dementia do not want to join that queue and hate the idea.

Dementia represents about 128 different conditions, depending on how you count them, ranging from Alzheimer’s disease at one end (very common) to anti-potassium antibodies paraneoplastic dementia (relatively rare). As dementia, a progressive condition affecting the brain, can in theory affect any of the thinking functions of the brain, in theory it is possible that any of the cognitive functions ranging from attention to higher order visual processing can be affected. So that is what could be in theory expected in a ‘dementia friendly checkout’.

It is hard to say why dementia friendly checkouts have been greeted with such enthusiasm. Certainly any reasonable leaders in the NHS should not associate themselves with such an unintelligent offensive policy. English dementia policy and their leaders should not be for the promotion of themselves at the expense of the wellbeing of people living with dementia or carers.

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The views of people living better with dementia, and their closest ones, matter intensely

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There’s been a long history of people having difficulty in saying what they mean by ‘integrated care’.

Such debates nearly always converge on difficulties and ‘sustainability’ of funding. In the narrowest sense, it probably means health and care coming together under operational constraints such as pooled budgets and care coordinators. In the wider sense, it probably refers to the notion of the health and wellbeing of a member of the public being determined by standards in health and care, but also in the wider environment, such as transport, leisure or housing.

I personally don’t feel we are all ‘patients’ all of the time, as this means for me we are subject to a medical intervention of some sort. To explain what I mean here, I am an alcoholic in recovery. I do not take any pills to keep me in recovery – it’s simply a way of life. That is my belief; that is my lived experience.

Recent news headlines have drawn attention to the drive towards overmedicalisation. Deborah Orr did an excellent piece on it, and Dr Aseem Malhotra has been determined in getting this the exposure it deserves.

There’s been some confusion about how hospital patients live with dementia, and it might be that a figure round 45% is at the upper end of the scale. There has nonetheless been a helpful scrutiny of the experience of people living with dementia in acute hospital settings, with an acknowledgement that enhancing health environments has a wider rôle to play. Acknowledging that individuals have distinct identities, and are not simply fodder for the NHS ‘patient flow machine’, through respect of their biographies, through life story has played a huge in changing the narrative.

I have been both a junior doctor and a patient, in fact in the same major teaching hospital in dementia in London. Ward rounds are fast, and constitute the ‘operational business’ of seeing the patient briefly armed with recent investigations. But they are in no sense of the word the doctor getting to know the patient. They’re a snapshot, in reference to what more has to be done on an admission, with a view to discharge. People with dementia end up in acute hospital for the most part not directly due to the dementia but due to a concomitant problem such as pneumonia or urinary sepsis.

‘Measuring the patient’ serves no function unless you actually want to listen carefully to, and not just ‘hear’, the experiences of people with dementia and their closest ones. That’s why it’s important to listen to people’s point of views; a carer might wish to accompany a person with dementia into hospital, and that person with dementia might want it too. And ‘views’ on a service are not the same as the ‘experience’. I know somebody’s experience of how he received the diagnosis of dementia in a busy outpatients’ clinic in a noisy environment – but I also know full well his view on it, and I’m pretty certain it has never been acted upon by his local NHS Trust to improve the service delivery. And there’s little appetite of Big Charity to want to use their research monies to investigate this.

And yet despite this, a person living with dementia is actually the expert in his dementia in his place and his time, and he’ll tell you that he is far more than his condition. It’s essential to provide an environment where people can talk about their views, beliefs, concerns and expectations in an un-rushed, unstructured way, so as to bring out the details of greatest importance or interest to patients using the NHS or people using the care services.

A huge amount of effort is put into the machinery of feedback for the NHS but my experience of buckets of complaint forms and incident forms which were simply filed in file 13. If a person with dementia feels that something has gone ‘right’, in other words he has received useful advice about design of his home environment, useful help on managing other health conditions, or felt that he is living in appropriate housing, such ‘good feedback’ should be harnessed. Admittedly, this is probably less common than complaints, but they all feed into a culture of improvement, and it’s essential that the workforce should have the values where they should wish to embrace improvements in health and care, for both research and service provision.

I believe strongly as someone who has trained in the law that rights are useless unless they acted upon. We shouldn’t be afraid to tackle poor care knowing what we know about equality and human rights through bodies such as the Equalities and Human Rights Commission, in, say, upholding dignity under a right to be free from degrading treatment. But likewise we can’t rely on the market to deliver this in a patchy piecemeal market – private providers also need support in understanding the picture. People do need support, and they do need to feel there is some immediacy about an appropriate action happening.

A big part of where things have gone wrong in certain areas of service provision or research, such as in diagnosis and post-diagnostic support of people from various ethnic groups, LBGT groups, people with longstanding intellectual difficulties, younger onset dementia, for example, is that the systems are not sufficiently flexible and do not have the capacity or resources to cope. Co-creating improvement in a spirit of partnership, not “bums on seats” on panels, must be the way forward here.

Ultimately, I want professionals, academics, commissioners, practitioners, amongst others to be able to say, “You said and we listened” from the lived experiences to inform on policy in dementia in England. Sadly, we still are a long way from that, but we’ve begun in the right direction I feel.

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A lack of patients' or carers' representative on the World Dementia Council is either an oversight or is entirely deliberate

In fairness, there’s nothing ambiguous about the stated intentions of the ‘World Dementia Council‘.

“The creation of a World Dementia Council was one of the main commitments made at the G8 dementia summit in December 2013. The council aims to stimulate innovation, development and commercialisation of life enhancing drugs, treatments and care for people with dementia, or at risk of dementia, within a generation.”

In the UK jurisdiction, there is much deep concern about the extent to which policy should be driven towards a ‘cure’ or ‘care’ for dementia.

Only this week, another story about poor standards in an English care home hit the headlines.

An undercover reporter had filmed a video appearing to show a partially paralysed woman being slapped at The Old Deanery at Bocking, near Braintree. The home’s owners have now sacked a total of seven staff and suspended one other. Essex Police said an investigation of the alleged abuse had been launched after detectives viewed the programme.

The reports of closure of day clubs and small social enterprises losing tenders stream in every week.

Meanwhile, in “Dementia Friends”, which is led by the Alzheimer’s Society, people will be given free awareness sessions to help them understand dementia better and become Dementia Friends.

By 2015, 1 million people will become Dementia Friends. The £2.4 million programme is funded by the Social Fund and the Department of Health. The scheme has been launched in England, and the Alzheimer’s Society is hoping to extend it to the rest of the UK soon.

It could be a genuine belief that industry leaders in economics, Pharma and innovations feel they do not need to listen to the views  of persons with dementia or carers.

But I totally reject this hypothesis.

It is a huge kick in the teeth not to have representatives on a body actually called the “World Dementia Council”.

It is impossible for Pharma, whose primary duty is admittedly to their shareholders, to enter the ‘dementia market’ without an understanding of the needs of the market involved.

Furthermore, all innovations need to be adopted.

The work of Prof Roger Orpwood, Emeritus Professor of Medical Engineering at Bristol, is well known to many experts in dementia innovations.

Orpwood recently retired as Director of the Bath Institute of Medical Engineering (BIME) after a career in engineering design and research, initially in Industry, and then in academia and the health service.

His groundbreaking work is cited in my book “Living well with dementia”, not least because his assistive technologies for dementia through his research grants have been amazing.

I also admire the painstaking way in which he tested all his assistive technology adaptations with actual persons with dementia. This is explained in great detail in all Orpwood’s peer-reviewed papers which I have cited in my references.

I have previous reported a straw electronic poll on who were the ‘winners and losers’ of the G8 dementia summit.

96 people took part. The results clearly showed that the vast majority of people thought that large charities, corporate finance and the pharmaceutical industry were clear winners. People with dementia and carers were the clear losers, in perception.

Consistent with this, the #G8dementia summit contained little in the way of patients’ or carers’ representations relative to the needs of corporate finance, Pharma-directed research and Pharma, in the discussion sessions.

The few that appeared were outstanding through, for example Beth Britton asked a focused question on the need for more research into psychological intervention. This feeds in fact into the point there are no patients or carers representatives on the World Dementia Council, making it far less likely for high quality research into living well with dementia – which we desperately need – to be mandated.

On a happier note, Peter Dunlop gave an outstanding speech wihich received a standing ovation.

And Beth’s video was extremely special indeed for many of us.

But an explanation for the lack of patients’ and carers’ representatives on the World Dementia Council can perhaps be found in the original raison d’être of the G8 dementia summit.

A BBC News website headline proudly boasts from 10 October 2012, “Hope over dementia summit boost to ailing industry‘.

Likewise, there were no patients or carers representatives at the G8 dementia summit itself, held last year in December 2012.

The general impression from my survey was that the G8 dementia summit was a ‘great opportunity’, but also a ‘waste’.

In the court of public opinion, and bear in mind that politicians and the pharmaceutical industry get their moral license to practise from their democratic acceptance, this lack of representation on the World Dementia Council has gone down like a ‘lead balloon’.

It’s simply untrue there’s a lack of good candidates of people living with dementia who could have done a brilliant job of representing views of people: Kate Swaffer and Richard Taylor immediately spring to mind.

All these shenanigans from the UK government-led policy are in total contrast to the enormous amount of warmth, goodwill and enthusiasm from the Dementia Alliance International, a stakeholder group led by people with dementia, at the Alzheimer’s Disease International conference currently under way in San Juan as we speak.

DAI15DAI11

the panel

Whatever the rationale for the decision, it is incredibly bad PR for the “World Dementia Council”, raising serious questions about accountability, transparency and governance like the Prime Minister’s Dementia Challenge itself.

Jo's comment

It is essential to make clear all potential conflicts of interests known of these clearly well connected people on the Council.

And if you think I am a lone voice.

I am not.

Here’s JeanGeorges CEO of Alzheimer’s Europe (@JeanGeorgesAE):

Things can only get better. Hopefully.

 

 

 

Appendix

Members appointed include

Sir William Castell, Chairman of the Wellcome Trust

Dame Sally Davies, Chief Medical Officer at theDepartment of Health

Tim Evans, Director for Health, Nutrition and Population at the World Bank

Franz Humer, Chairman of Diageo plc

Dr Yves Joanette, Scientific Director, Canadian Institute of Health Research, Institute of Aging

Professor Martin KnappLondon School of Economics

Dr Kiyoshi Kurokawa, Professor of the National Graduate Institute for Policy Studies and Science Advisor to the Cabinet of Japan

Yves Leterme, Deputy Secretary General of theOECD (The Organisation for Economic and Co-operation and Development)

Raj Long, Senior Regulatory Officer – Integrated Development, Global Health at the Bill & Melinda Gates Foundation

Professor Pierluigi Nicotera, Scientific Director and Chairman of the Executive Board at the German Centre for Neurodegenerative Diseases (DZNE)

Professor Ronald PetersenMayo Alzheimer’s Disease Research Center

Paul Stoffels, Worldwide Chairman, Pharmaceuticals,Johnson & Johnson

George Vradenburg, President and Chairman of theVradenburg Foundation and US Against Alzheimer’s

 

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Awareness about dementia is not just public ignorance: it's also critical to living with dementia

Often I’m struck about how the ‘awareness’ focus in dementia is making people in general public simply knowledgeable that dementia exists in 800,000 people in the UK.

But awareness about symptoms in persons living with dementia themselves is also a critical component, and cannot be factored out of the debate in current policy drive to identify the missing people undiagnosed dementia.

Policy wonks without a scientific or clinical training in dementia have become very adept at blaming GPs for underdiagnosis of dementia, but people who have some knowledge of this specialist field know that the situation is far more complicated. Other issues include perhaps a reluctance of people to seek a diagnosis because of the life-changing impact that such a diagnosis might make. There may also be nuances between different ethnic or social groups in society which might act as ‘barriers to diagnosis’. Also, some persons with dementia may be genuinely unaware of the extent of their own symptoms.

To be fair, it’s impossible for anyone who doesn’t have a diagnosis of a dementia to understand completely what living with dementia really means. Norman McNamara, who was diagnosed with dementia a few years ago at the age of fifty comments: “What can be worse than having dementia?” “It’s knowing you have dementia – it’s like having two diseases, having it, and knowing you have it.”

This is a helpful description of ‘insight’, that people with dementia can have into their own conditions. In this video, Norman reports symptoms which he knows are getting worse, and which knows are visibly getting worse to his wife, Elaine. Patients with neurological disorders are often partially or completely unaware of the deficits caused by their disease. This impairment is referred to as “anosognosia”, and it is very common in neurodegenerative disease, particularly in frontotemporal dementia.

The mechanisms underlying this phenomenon are generally poorly understood. It’s likely, however, memory for facts and events likely plays an important role. In addition, the frontal lobe systems are important for intact self-awareness, but the most relevant frontal functions have not been identified. Motivation required to engage in self-monitoring and emotional activation marking errors as significant are often-overlooked aspects of performance monitoring that may underlie anosognosia in some patients.

Another common type of dementia is a behavioral variant frontotemporal dementia (bvFTD), characterised by a slow change in personality and behaviour, is often unnoticed by the individual himself or herself. Loss of insight is a prominent clinical manifestation of this condition, but its characteristics are poorly understood. Indeed, Mario Mendez and Jill Shapira reported in 2005 some research into what appeared to cause this lack of insight in this particular condition. They found that it is associated with low blood flows in the right hemisphere, particularly the frontal lobe, the part of the brain near the front of the head.

For the most common type of dementia, the dementia of the Alzheimer type, the generally widely-held belief is that persons experience a progressive loss of insight as the severity of dementia increases. People with this type of dementia can get particularly forgetful. Most people aren’t fully aware of their impaired abilities, which doctors describe as a “lack of insight”. This can put them at risk of injury from unsafe actions and also make them less willing to seek and comply with treatment.

However, understanding a person’s level of insight can help doctors and carers better manage their treatment and daily needs, but gauging insight can be difficult. The usual approach is to ask patients questions about their current abilities and compare their answers with those from an ‘informant’, which is usually a family member or someone else close to the patient.

But this method isn’t ideal, as it relies on the informant’s opinion of the patient’s abilities, which can be swayed by factors such as how well they know the patient and how distressing they find their behaviour.

Norman often states that ‘once you’ve met one person with dementia, you’ve met one person with dementia’. This means that for any one person with dementia there’ll be different extents of symptoms of illness, different extents of abilities, different levels of insight, and therefore different perceptions of ‘living well with dementia’. So, it is arguably difficult to compare whether one type of dementia is ‘worse’ than other?

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Who were the biggest winners and losers of the G8 dementia summit? My survey of 96 persons without dementia

G8

Background

The G8 summit on dementia was much promoted ‘to put dementia on top of the world agenda’.

It is described in detail on the “Prime Minister’s Dementia Challenge” website.

I went only last Monday to Glasgow to the SDCRN conference retrospective on the G8 dementia. It was a sort-of debrief for people in the research community about what we could perhaps come to expect. And what we’d come to expect, just in case any of us had thought we’d dreamt is was the idea of identifying dementia before it had happened or just beginning to happen and stopping it in its tracks then and there with drugs.

This is of course a laudable aim, but an agenda utterly driven by the pharmaceutical industry. My philosophy (not mine uniquely) “Living well in dementia” is called “non-pharmacological interventions” to denote a sense of inferiority under such a construct.

This slide had a lot of criticism

Aim

There has never been a media report on people’s views about the G8 dementia summit.

There has never been an analysis of the messaging of this summit in the scientific press, to my knowledge.

This study was conducted as a preliminary exploratory study into the language used in a random sample of 75 articles in the English language.

Methods

I completed a survey of reactions to the G8 dementia summit held last year in December 2013. I recruited people off my Twitter accounts @legalaware and @dementia_2014, and there were 96 respondents. Responses to individual items varied from 63 to 96.

I used ‘SurveyMonkey’ to carry out this survey. With ‘SurveyMonkey’, you cannot complete the survey more than once.

(I have also already collected 19 detailed questionnaire responses from Clydebank which I intend to write up for the Alzheimer Europe conference later this year, also in Glasgow. And also six people living with dementia also responded; and I’ll analyse these replies separately. I reminded myself by looking at the programme of the summit again what the key topics for discussion were – drugs, drug development and data sharing, with a sop to innovations and provision of high quality of information. It is perhaps staggering that there has been no detailed analysis of who benefited from the G8 dementia, but given the nature of this event, the media reportage and the events of my survey, this retrospectively is not at all surprising to me.)

Exclusions

Persons with dementia were directed to a different link (of the same survey.)

Results

The results encompass a number of issues about media coverage, the relative balance of cure vs care, and who benefited.

Media coverage

Overall, most people had not caught any of the news coverage on the TV (56%) or radio (55%). But most had caught the coverage on the internet, for example Facebook or Twitter (66%). 87% of people said they’d missed the live webinar. It was possible to answer my survey without having caught of any of the G8 seminar, however.

So what did people get out of it and what did they expect? Most people did not think the summit was a “game changer” (53% compared to 16%; with the rest saying ‘don’t know’), although the vast majority thought the subject matter was significant (82%) (n = 90).

Therefore, unsurprisingly, a majority considered the response against dementia to be an opportunity for policy experts to produce a meaningful solution (58%). However, it’s interesting that 24% said they didn’t know (with a n = 90 overall.)

In summary, they had high hopes but few thought it was a good use of a valuable opportunity to talk about dementia.

Many of us in the academic community had been struck in Glasgow at the sheer “terror” in the language used in referring to dementia. A large part of the media seemed to go for a remorseless ‘shock doctrine’ approach. Prof Richard Ashcroft, a medical law and bioethics expert from Queen Mary and Westfield College, University of London, wrote a very elegant piece about this, and his personal reaction, in the Guardian newspaper.

In terms of language, the respondents were consistent in not viewing the response against dementia as a “fight” (61%), a “war” (84%), a “battle” (72%) or an “epidemic” (70%) (n ranging from 83 to 86). 56% of people considered it unreasonable to speak of “turning the tide against dementia”. In terms of personal reactions, 82% considered themselves not to be “shocked” by dementia.

91% of people thought it was appropriate to talk of ‘living with dementia’ in the early stage (n = 85), but 82% of people did not think it was more appropriate to talk of people ‘suffering from dementia’ at this early stage (n = 86). In retrospect, I should’ve asked whether the appropriate phase was ‘living well with dementia’, so I suppose nearly 91% endorsing ‘living with dementia’ at all is not surprising. I have previously written about the use of the word “suffering”, as it is so commonly used in newspaper titles of articles of dementia here, though I readily concede it is a very real and complex issue.

living well suffering

The opportunity presented by the G8 dementia summit: cure vs care

Despite all the media hype and extensive media coverage of the G8 dementia summit, 70% of people “did not feel excited about the world or country’s response to dementia” (n = 86).

But it is possibly hard to see what more could have been done.

The presentation by Pharma and politicians for their dementia agenda was extremely slick. This may be though due to a sense of politicisation of the dementia agenda, a point I will refer to below.

Q21

Early on in the meeting, World Health Organization Director-General Magaret Chan reminded the delegates – including politicians, campaigners, scientists and drug industry executives – how much ground there was to cover.

“In terms of a cure, or even a treatment that can modify the disease, we are empty-handed,” Chan said.

“In generations past, the world came together to take on the great killers. We stood against malaria, cancer, HIV and AIDS, and we should be just as resolute today,” Cameron said. “I want December 11, 2013, to go down as the day the global fight-back really started.”

It is therefore been of conceptual interest as to whether dementia can be considered in the same category as other conditions, some of which are obviously communicable. In my survey, people reported that that, before the summit, they would not have considered dementia comparable to HIV/AIDS (88%), cancer (70%), or polio (92%) (n = 86).

This is interesting, as a common meme perpetuated also by certain parliamentarians (who invariably spoke about Dementia Friends too) was that the same sort of crisis level in finding a cure for dementia should accompany what had happened for AIDS decades ago.

Biologically, the comparisons are weak, but it was argued that AIDS, like dementia now, suffered from the same level of stigma. Dementia, however, is an umbrella term encompassing about a hundred different conditions, so the term itself “a cure for dementia” is utterly moronic and meaningless.

Also in my survey, 67% of people reported that they did not feel more excited about the future of social care and support for people living with dementia (n = 85), and virtually the same proportion (66%) reported that they did not feel excited about the possibility of a ‘cure’ for dementia (defined as a medication which could stop or slow progression) (n = 85).

This reflects the reality of those people living in the present, perhaps caring for a close one with a moderate or severe dementia.  It had been revealed that budget cuts have seen record numbers of dementia patients arriving in A&E during 2013. Regarding this, it was estimated that around 220,000 patients were treated in hospital as a result of cuts in social care budgets, which left them without the means to get care elsewhere.

It is known that the government has cut £1.8 billion from social care budgets, which is in addition to the pressure being applied to GP surgeries. In 2008 the number of dementia patients arriving in A&E was just over 133,000. The concern is that the Alzheimer’s Society, while working so close to deliver “Dementia Friends”, is not as effective in campaigning on this slaughter in social care as they might have done once upon a time. Currently, we now have the ridiculous spectacle of councils talking about dementia friendly communities while slashing dementia services in their community (as I discussed on the Our NHS platform recently).

Why Big Pharma should have felt the need to breathe life into the corpse of their industry for dementia is interesting, though, in itself. Pharma obviously is ready to fund molecular biology research, and less keen to fund high quality living well with dementia, and there is also concern that this agenda has pervasively extended to dementia charities where “corporate capture” is taking place. A massive theme of the G8 dementia summit was in fact ‘personalised medicine’. For example, there is growing evidence that while two patients may be classified as having the same disease, the genetic or molecular causes of their symptoms may be very different. This means that a treatment that works in one patient will prove ineffective in another. Nevertheless, it is argued the literature, public databases, and private companies have vast amounts of data that could be used to pave the way for a better classification of patients. According to my survey, despite ‘personalised medicine’ being a big theme of the summit, strikingly 66% felt that this was not adequately explained. There’s no doubt also that the Big Pharma have been rattled by their drugs coming ‘off patent’ as time progresses, such as donepezil recently. This has paved the way for generic competitors, though it is worth noting that certain people have only just given up on the myth that cholinesterase inhibitors, a class of anti-dementia drugs, reliably slowed the progression of Alzheimer’s disease in the majority of patients.

Who benefited?

In terms of who ‘benefited’ from the G8 dementia summit, I asked respondents to rate answers from 0 (not at all) to 5 (completely).

Research First of all, it doesn’t seem researchers themselves are “all in it together”. For example, these are the graphs for researchers (molecular biology) (n = 68) and researchers (wellbeing) (n = 68), with rather different profiles (with the public perceiving that researchers in molecular biology benefited more). This can only be accounted for by the fact there were many biochemical and neuropharmacological researchers in the media coverage, but no researchers in wellbeing.

37 38

Pharmaceutical industry But the survey clearly demonstrated that the pharmaceutical industry were perceived to be the big winners of the G8 dementia (n = 68).

Ministers are hoping a government-hosted summit on dementia research will help boost industry’s waning interest in the condition, and to some extent campaigners have only themselves to blame for pinning their hopes on this one summit.

The G8 Summit came amidst fears the push to find better treatments is petering out, and it is still uncertain how effective some drugs currently in Phase III trials might be, given their problems with side effects and finding themselves into the brain once delivered.

39

And the breakdown is as follows:

table

Charities  The survey also revealed a troubling faultline in the ‘choice’ of those who wish to support dementia charities, and potential politicalisation of the dementia agenda. It has been particularly noteworthy that this recent initiative in English policy was branded “the Prime Minister Dementia Challenge”, and ubiquitously the Prime Minister was (correctly) given credit for devoting the G8 to this one topic.

A previous press release had read,

“Launched today by Prime Minister David Cameron, the scheme, which is led by the Alzheimer’s Society, people will be given free awareness sessions to help them understand dementia better and become Dementia Friends. The scheme aims to make everyday life better for people with dementia by changing the way people think, talk and act. The Alzheimer’s Society wants the Dementia Friends to have the know-how to make people with dementia feel understood and included in their community.. By 2015, 1 million people will become Dementia Friends. The £2.4 million programme is funded by the Social Fund and the Department of Health. The scheme has been launched in England today and the Alzheimer’s Society is hoping to extend it to the rest of the UK soon. Each Dementia Friend will be awarded a forget-me-not badge, to show that they know about dementia. The same forget-me-not symbol will also be used to recognise organisations and communities that are dementia friendly. The Alzheimer’s Society will release more details in the spring about what communities and organisations will need to do to be able to display it.”

Therefore, the perception had arisen amongst the vast majority of my survey respondents that large charities were big winners from the G8 dementia summit. This is perhaps unfair as there was not much representation from other big charities apart from the Alzheimer’s Society, for example Dementia UK or the Joseph Rowntree Foundation.

I feel that this distorted public perception in the charity sector for dementia is extremely dangerous.

And this finding is reflected in the corresponding graph for ‘small charities’. Small charities were not represented at all in any media coverage, save for perhaps ambassadors of smaller charities there in a personal capacity at the Summit.

The numbers sampled for their views on large and small charities were both 67.

large and small charities

Paid carers and unpaid caregivers 

The major elephant in the room, or maybe more aptly put an elephant who wasn’t invited to be in the room at all, was the carers’ community.

Only recently, for example, it’s been reported from Carers UK that half of the UK’s 6.5 million carers juggle work and care – and a rising number of carers are facing the challenge of combining work with supporting a loved one with dementia. The effects of caring for a person with moderate or severe dementia are known to be substantial, encompassing a number of different domains such as personal, financial and legal. It is also known that without the army of millions of unpaid family caregivers the system of care for dementia literally would collapse.

These are the graphs for paid (upper panel) and unpaid (lower panel) carers and caregivers (n = 65 and n = 66 respectively), with the most common response being “not at all benefiting”.

caregivers

Politicians

But when asked if the politicians benefited, the result was very different.

Admittedly, few politicians were in attendance from the non-Government parties in England, and none from the main opposition party was given an opportunity to give a talk.

Both Jeremy Hunt and David Cameron gave talks. There is clearly not a lack of cross-party consensus on the importance of dementia, evidenced by the fact that the last English dementia strategy ‘Living well with dementia’ was initiated under the last government (Labour) in 2009.

The overall impression from 64 respondents to this question that politicians benefited, and some thought quite a lot.

politicians

Corporate finance A lot of discussion was about ‘investment’ for ‘innovation’ in drug research. Andrea Ponti is a highly influential man. He has been Global Co-head of Healthcare Investment Banking and Vice Chairman of Investment Banking In Europe of JPMorgan Chase & Co. since 2008. Mr. Ponti joined JPMorgan from Goldman Sachs, where he was a Partner and Co-head of European healthcare, consumer and retail investment banking, having founded the European healthcare team in 1997.

At the G8 dementia summit, Ponti advised that biotechnology and drug research can be a ‘risky’ investment for funders, rebalance of risk/reward needed. Ponti specifically made the point the rewards for investing in drug development had to be counterbalanced by the potential risks in data sharing (which are not insubstantial legally across jurisdictions because of privacy legislation).

Anyway, in summary, it was perhaps no surprise that my survey respondents felt that corporate finance were big winners of the summit (n = 65).

45

Persons with dementia And also for persons with dementia themselves?

One would have hoped that they would have been big winners according to my survey respondents, but the graph shows a totally different profile (with a minority of respondents rating that they benefited much.)

This is very sad.

66 answered this question.

The overall picture was this.

PWD1

And the breakdown of results was this.

PWD2

What will people do next?

Finally, it seemed as if the G8 Dementia Summit produced a ‘damp squib’ response with people in the majority neither more or less likely to donate to dementia charities (69%), donate to dementia care organisations (74%), get involved in befriending initiatives (72%), talk to a neighbour living with dementia or talk to a caregiver of a person living with dementia (58%), or get involved in dementia research (69%) (n varying from 73 to 78).

Limitations

Respondents were all in the UK, but the G8 dementia summit was clearly targeted in a multi-jurisdictional way.

It could be that there is huge bias in my sample, towards people more interested in care rather than Pharma. My follower list does include a significant number of people living with dementia or who have been involved in caring for people with dementia.

Conclusion

It would be interesting to know of any in-house reports from other organisations as to how they perceived they felt benefited from the G8 dementia, for example from patient representative groups, Big Pharma, carers and the medical profession. Pardon the pun, but the results taken cumulatively demonstrate a very unhealthy picture of the public’s perception in the dementia agenda in England, who calls the shots, and who benefits.

Given that this G8 dementia was to a large extent supposed to establish a multinational agenda until 2025, in parallel to the multinational nature of the response of the pharmaceutical industry, for those of us who wish to promote living well with dementia, it is clear some people are actually the problem not the solution.

This is incredibly sad for us to admit, but it’s important that we’re no longer in denial over it.

 

 

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In "Big Dementia", who cares about dementia carers?

Without the work of unpaid carers, the formal care system would be likely to collapse. Some feel that the State gets a “very good deal” out of this current system. The ongoing support from unpaid carers will be a particular issue for the care system in the future, as changing demographic patterns, shifts in family composition, labour force participation and increased geographical mobility will affect the availability of the unpaid care workforce. There are also significant issues emerging in care work.

It can be argued that some carers in dementia, whether unpaid carers or paid care workers, are perceived rather unfairly by society, and this is a matter of real national concern. The issue of researching personalised medicines, and pooling clinical drug trial data, across a number of different jurisdictions, is a curiously international phenomena. It feeds into the ‘big is better’ narrative, which is of course a key aspect of why large multinational companies like ‘Big Data’. But converting our response to dementia to a solution for Big Pharma is not solely the answer. The answer is not simply ‘Big Dementia’, much as that might be attractive for the corporates. It is just as crucial to consider who cares about dementia carers. The two are not necessarily mutually exclusive of course. In an ideal world, we should like to offer the best care for people with dementia, as well as effective symptomatic treatment as well as a cure. However, it’d be a disaster if we could hold our hands up, and say that we could in all reality offer neither. As the international economies recover after the global financial crash, caused by the effects of poor global regulation of securitised mortgage products, it might seem fitting that the international landscape can be tweaked to make dementia profitable for Big Pharma. However, it is clear that our own national parliament, in the recent ‘dementia care and services’ debate on 7 January 2014, wishes to have a frank and sincere debate about who cares for the carers. As a society, this is dependent on economics within our control. If people need to talk about about the ‘cost’ of dementia relentlessly, there might be an equal and opposite need to talk about the value of carers; and this needs to be a national debate.

The usual tired mantra from politicians would of course be trotted out, particularly from those of a certain political inclination, that as the economy improves our living standards will improve. But it has been a concern of all main political parties that living standards for the many are not expected to rise as the economy recovers. In this jurisdiction, there’s a particular phenomenon of how the very wealthy seem to have been relatively immune from the global financial crash. This ‘cost of living crisis’ has been partly attributed to big corporates colluding legally to maintain prices to promote shareholder dividend rather than customer value. In England, the Health and Social Care Act (2012) was legislated by the current government to promote a quasi-market in the NHS in England. The aim was to introduce competition, bolster an economic market regulator, and to produce a mechanism for fast managed decline of ‘failing’ NHS Foundation Trusts. Clinical commissioning groups (CCGs) and health and wellbeing boards were also introduced new parts of the NHS in England. CCGs plan and buy local health services, while health and wellbeing boards influence the local decisions that shape health, public health and social care. In this new political and socio-economic landscape, it has been particularly striking, but encouraging, that the shared vision of the “Dementia Action Alliance” is of an England and Wales where the health and wellbeing of carer of a person with dementia are of equal priority to those of the person for whom they care. Ideally, for competition to thrive, it should not be in the hands of a few corporates and corporate-like charities, but all stakeholders should be given a fair slice of the action.

The wellbeing of carers of dementia in England is related to both its national economy and law, and this is something which is not within the powers of the G8 arena. In keeping with previous Conservative governments, George Osborne has warned that “self-defeating” increases to the minimum wage could “cost jobs”, and John Major, the Prime Minister 1990-7 had argued strongly the dangers of the national minimum wage. Many of the same arguments are likely to resurface as the UK Labour Party will undoubtedly raise the importance of the “living wage”, prior to the general election to be held on May 7th 2015. Cabinet ministers including Business Secretary Vince Cable and Work and Pensions Secretary Iain Duncan Smith are reportedly pressing, currently, for an “above-inflation rise” of 50p or more. Mr Osborne said he too wanted to see the £6.31 hourly minimum wage rise, but he said it should be left to the Low Pay Commission to set the appropriate level.

As Norman Lamb said in the parliamentary debate the other day, “We ask carers to do some of the most difficult work that one can ever imagine but the rewards and the training and support they get is minimal.”

An emerging political consensus has promisingly emerged that “we can never get good care on the back of exploiting very low-paid workers”, as Lamb put it. It turns out that carers are currently paid the national minimum wage if they are lucky. That is, of course, a breach of the minimum wage legislation. According to an authoritative study Dr Shereen Hussein, of King’s College London, estimates that there are between 150,000 and 220,000 care workers in this position. And this is using conservative assumptions – the real number could be higher. The flouting of national minimum wage has, however, become alarmingly widespread.  There are a variety of employment practices that result in the minimum wage being circumvented, the most common of which is when councils sign contracts with private providers who recruit staff to provide short slivers of care in the home. A quarter of an hour can be all that a care worker gets to wash, change, feed and talk to someone with dementia. Dignity for the client is often the first casualty: a variety of groups representing the vulnerable, as well as some of the more scrupulous employers, fear that rushed care contracted by the minute often means inadequate care. Previous findings suggest almost half of councils still set 15 minutes as their minimum time slot.

Furthermore, many paid care workers are on zero-hours contracts. Unison’s ethical care charter  aims to put an end to poor pay and working conditions in home care services. Under the charter, for example, Islington council has agreed to implement the charter’s main principles of getting rid of zero hour contracts, ensuring travel time is counted in employees’ paid hours and implementing the London living wage, as well as setting up occupational sickness schemes. Islington, alongside Southwark council, has been an early adopter of the recommendations put forward by Unison in the their report into home care. Published in 2012, the report found that good carers were being lost to “easier jobs that pay more, like in supermarkets” after finding themselves unable to support their family on an inadequate and unreliable salary.

Many paid care workers also do not get paid for travelling between the appointments they undertake, but clearly care workers must be paid when they are travelling from one home to another. Furthermore it is common for remuneration systems to pay only pay per minute actually spent with clients, not the travel time between them. Dozens of these work-related journeys could be made each week as it’s a core part of the job. Not being paid for this time means those who care don’t get paid for a full day’s work.

It is also important for councils commissioning care work to be absolutely clear with those they contract with that they expect total compliance with the law. If a council is commissioning in a way which almost becomes complicit in a breach of the law, that is completely unacceptable. On the other hand, NHS Wiltshire has commissioned an “outcomes based continuing healthcare service” designed to improve quality, reduce cost and link up with social care – but which completely restricts patient choice. The “Help to Live at Home”  service has been commissioned jointly with Wiltshire Council. Contracts for the £23m service. The provider a patient receives will depend on where in the county they live. All health and social care services will be delivered by that provider and payment will depend on achieving a set of agreed outcomes.

There is a big difference between “care workers” and “unpaid carers”. A phenomenon worth keeping an eye on is that of “family caregiving” which has been on an upward trend in various jurisdictions, in part due to the economic recession. Some families lack the financial capabilities to pay professional caregivers. In fact, a huge group of carers comprise the “unsalaried family caregivers”. Family caregivers of people with dementia, often called the “invisible second patients”, are critical for people living with dementia. The effects of being a family caregiver, can be both positive and negative, with high rates of burden and psychological morbidity as well as social isolation, physical ill-health, and financial hardship. Indeed, it is mooted that comprehensive care of a person with dementia can include building a partnership between all health professionals and family caregivers. Many family caregivers of people with dementia might also employed, of whom many have reported that they missed work; a proportion may have even that turned down promotion opportunities or given up work to attend to caregiving responsibilities. There is furthermore no doubt that the benefit system is confusing, and it had been hoped that universal credit would be a method of simplying that. If you care for someone with dementia, you are normally advised to check that you are both getting all the benefits and tax credits you are entitled to. For example, you may be able to claim Personal Independence Payment or Attendance Allowance for the person with dementia, and Carer’s Allowance for the carer. You, or the person you look after, may be entitled to a discount on your council tax. Again, the situation can be complicated, and many people get simply put off from applying for the benefits for which they could be entitled due to sheer complexity and/or lack of guidance.

So, how will we eventually know when carers are being looked after? We will hear that carers of people with dementia are confident that their own health and wellbeing needs and requirements are recognised and supported, so that no carer feels alone, and are given regular breaks. This is in keeping with how local and national guidance for working time should be implemented anyway. Carers of people with dementia are also recognised as essential partners in care, assuming an approach which could be best called “coproduction”. Furthermore, carers of people with dementia would also have access to expertise in dementia care for information, advice, support and co-ordination of care. The “Dementia Action Alliance” has been the coming together of over 800 organisations to deliver the National Dementia Declaration; a common set of seven outcomes informed by people with dementia and their family carers. The Declaration provides an ambitious and achievable vision of how people with dementia and their families can be supported by society to live well with the condition

It would be incredibly valuable to have carers have a voice on CCGs and health and wellbeing boards, especially since commissioners are supposed to be promoting wellbeing pursuant to the Care Bill currently being discussed in the House of Commons and the House of Lords. The demands of caring for someone with dementia are great and many carers say they feel  totally unsupported. How to include unpaid care workers in this commissioning  debate is undoubtedly a difficult issue, but one which simply cannot be ultimately parked for convenience.

“Big Dementia” may not provide all of the answer, unless care is combined with cure.

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