Dementia

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

Shibley Rahman 0 Comments

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.

 

 

 

 

 

 

 

If life is like a box of chocolates, then surely dementia care is like a cake?

Shibley Rahman 0 Comments

If life is like a box of chocolates, then surely dementia care is like a cake?

Karen Dening (@KDening), Director of Admiral Nursing at Dementia UK, mooted this idea at the beginning of the UK Dementia Congress in Telford last week.

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The strands in national policy for dementia care include a timely diagnosis, where much of the emphasis in policy and resources has been placed.

But it is pretty uncertain how many of the diagnoses purporting to be dementia in fact turn out to be the minimal cognitive impairment (cognitive symptoms, but not dementia). Also, it is unclear how many diagnoses of young onset dementia, where memory is very often not the first symptom, are being missed.

The policy also includes ‘dementia friendly communities’, better conceptualised as ‘dementia accessible’ or ‘dementia inclusive’ communities. The ‘friends’ programme in the England was modelled on the friends initiative in Japan, but here, and in Europe, especially much more effort has been to link the policy with human rights and equality.

Dementia is a disability, as evidenced by the guidance to the Equality Act (2010). So the approach of the United Nations Convention on Rights for People With Disabilities is very relevant here. As such, dementia is in a similar place to where activism on racism a few decades has been.

It would be wrong to think that ‘dementia friendly communities’, however defined, are a ‘quick fix’. There is a temptation to think that, coupled with ‘greater awareness’, the essence, unlike Vanilla Essence, is ‘cost neutral’.

As Prof John Hardy expressed on Newsnight last night, UK research into dementia is of a very high quality, as it has the integrity of the NHS to draw from on. Nonetheless it’s still the case that research in the dementias in the UK dwarfs the budget of the US, and the relative monies invested in research in the UK in the dementias is a fraction of that for cancer or HIV.

Clearly with social care on its knees, and likely to remain so in the UK’s forthcoming comprehensive spending round, not even a budgetary magic trick of transferring funding for dementia from social care to public health can save the care sector.

In England, pressures on the care sector include demands necessary safe staffing, at above the minimum wage have demonstrated how fragile the business model of residential setting really is. The interview with Guy Hands, and recent predicament of Four Seasons, is testimony to that.

It might seem that the attractive, cheap, option might be to produce a new model army of a nation of dementia advisors or dementia support workers, but there is an inevitable danger of stockpiling the workforce with an abundance of relatively less skilled signposts to increasingly disappearing services.

Dementia is also not where cancer is, in the use of advance care planning advancing continuity of care, or a network of national clinical nursing specialists. Whereas Marie Cure and Macmillan have been spectacularly successful in clinical care of patients with cancer, the record of the dementia sector is abysmal.

On the other hand, Admiral Nurses, clinical specialist nurses from Dementia UK, are in a great place to offer care and support to people living with dementia and their carers. How wonderful it would be if the 850,000 people with dementia could rely on them as a first port of call to discuss with them the timely diagnosis, information about the condition and local services, medication reviews, continuity of care, advanced care planning, legal (e.g. power of attorney) and safeguarding issues, end of life, and even, later, bereavement issues. Admiral Nurses are as far away from a niche service, in representing unmet and met service needs, as you can get.

 

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It is abundantly clear that the so-called masterchefs of the current cake have in fact made a pig’s ear of dementia care policy, promoting dementia as a brand far too much, ahead of the overall needs of the people who are trying to live beyond a diagnosis of dementia and carers.

This has been down to too much of certain ingredients, and not enough of others. The proof of the pudding, as ever, is in the eating.

Babette’s feast – and learning to care

Shibley Rahman 0 Comments

For some time, Kate Swaffer had been suggesting to me that I should watch one of her favourite films ‘Babette’s Feast’.

In case you were unaware, one of Kate’s remarkable talents is high-end cuisine. Kate even ran a restaurant. I went past it in a mini van while I visited Adelaide suburbs earlier this year.

In case you haven’t yet seen this extraordinary, remarkable film, I do not wish to do any spoilers. I do need to tell you some basic details though – it involves Babette producing a meal for twelve people, consisting of top quality courses. She barely has any help, but does it all to budget. There is no money left at the end of the evening.

If you are desperate to know the plot of the film, please refer to the synopsis here.

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Health and social care often look to other sectors to look for best practice. For example, only this afternoon, Jeremy Hunt made reference to two hundred ‘avoidable deaths’ in the NHS every week; ‘the equivalent of an aeroplane’. Travelling by air, for example the use of checklists, has become a paradigm for patient safety.

I started watching ‘Babette’s Feast’ just after midnight this morning. It finished before 2 am. It is an amazing film. You’ll see why when you watch it.

But in passing I could not of course help but think about the parallels between preparing a complicated meal for guests with ‘dementia care’. I’ve always had problems with the term ‘dementia care’ as it can sound very robotic. I think it is a rather unemotional term for something at the heart of humanity – that is looking after someone.

Is it that ‘dementia care’ sounds transactional? I think this issue of carer versus care recipient is problematic if there is a problematic power imbalance.

Back to the dinner party.

It is no small achievement for Babette to provide a meal with a number of courses, such that all the dishes arrive on time. This is a big operational ask.

But it is highly significant that the dishes had personal resonance for the guests – often invoking memories. Such evocation of memories, further, could lead to a massive outpour of wellbeing.

The meals together can cause the guests to feel much more content, such that they enjoy each other’s companies – overall the group’s wellbeing is much enhanced.

Therefore, Babette’s feast is more than a set of dishes. It has personal resonance for the people involved – making it unique.

Babette neither profits or makes a loss on the meal (for reasons I don’t want to go into, otherwise it gives a key detail of the plot away.) The ‘outcome’ is that all the guests end up very happy.

In this current climate, it is all very easy to become enveloped in the ‘costs of caring’ and operationalising care. But this is of course to take away something very special which you can’t bottle.

Choice is heavily emphasised in English dementia policy. Thinking about it more, choice is an inevitable consideration when the discussion becomes preoccupied that accounting phenomenon known as ‘scarce resources’. It is a political drive which can lead to rationing.

On the other hand, how much would you value ‘mercy’ and ‘compassion’ at? It is easy to know the cost of many things, and the value of nothing; and this is particularly so in residential dementia care I feel.

This quote for me summarises for me much of a shift towards a much healthier way of thinking for all of us:

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A brilliant film.

My final book on living with dementia: seeing the big picture

Shibley Rahman 0 Comments

The picture above was taken at Ljubljana in Slovenia where we had the 25th Alzheimer Europe conference on the theme of “Dementia: Putting strategies and research into practice”.

Perhaps one of the most overused terms of the century is ‘breaking down the silo’. I don’t know enough about the engineering of silos to comment, thankfully.

I wish to explain in my blogpost here the overall direction of travel for my final book to do with dementia. Like the previous books, it will be heavily guided by the current literature from the brilliant people doing dementia research around the world. This research comes from a number of different angles as usual: looking for therapies for particular dementias, as well as research which is more geared towards economics, law, psychology, or cognitive neuroscience. And crucially the lived experiences – great, good, and bad.

My final book will be on enhancing health in dementia. Health is not simply the absence of illness and disease, and the books will resume the social model of disability not the biomedical model. For my book, I will need to draw on current evidence and guidelines particularly from the medicine and nursing professions nonetheless, but only as relevant to “the big picture”.

The topics will mark a clear departure from my previous books ‘Living well with dementia: the importance of the person and the environment’ and ‘Living better with dementia: good practice and innovation” in some areas. There can be no denying that persons living with dementia in residential homes and at home are also living as part of “dementia friendly communities”.

I am particularly mindful of imminent developments in quality of post diagnostic support from the Alzheimer’s Society, Dementia UK, Care England, Care Quality Commission and NHS England.

Book 1

Details here

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Book 2

Details here

Bk2

Prof Sube Banerjee, Professor for Dementia at Brighton and Sussex Medical School, has kindly agreed to write the main Foreword for my third book. Sube will be joined by Lisa Rodrigues, formerly chief executive of Sussex Foundation Partnership Trust. Joining both Sube and Lisa will be Lucy Frost, clinical nursing specialist and campaigner.

They in fact join a great line up of brilliant people who have contributed forewords to my previous two books: namely, Kate Swaffer, Chris Roberts, Beth Britton, Prof Facundo Manes, Prof John Hodges and Sally Marciano.

The first book was written around the NICE Quality Standard 30 on “Supporting people to live well with dementia”. It was written just after the hugely successful Prime Minister’s Dementia Challenge, which coincided with a strong leadership drive to do with dementia around the world including the G8 and G7 legacy events. Another major event was the one hosted by WHO and Alzheimer’s Disease International in Geneva in March 2015.

My first book had a bias towards English dementia policy. My second book took a much more holistic view, and indeed included two chapters on global dementia strategies and diversity. In my second book, I introduced the importance of integrated care and whole person care in ‘seeing the person, not the dementia’.

In my third book, I will need to come back to recent service innovations in England, including the ‘vanguards’ and the ‘new models of care’. There is however a tendency though to be attracted to the ‘new and exciting’, and not to give proper scrutiny to on-running threads in policy.

It is going to be necessary to refer both to the developments in England’s policy, including also developments in system redesigns offering better value and system leadership, in my third book. I would also like to draw on best practice from other countries, for example the Alzheimer Society of Ireland’s anti-stigma campaign, or Scotland’s ‘Focus on Dementia’. The lead given on person-centred dementia care by ALLIANCE Scotland will be reflected.

There are a number of workstreams in Europe which are particularly relevant to this third book. I wish to address fairly addressing the health needs of persons living with dementia, whether in care at home or in a residential setting (such as a care home or nursing home). I should like this book also to retain the strong human rights theme developed in book 2, with discussion of how the UN Convention on Rights for Persons with Disabilities could be applied for dementia around the world.

My hope for the third book, like the previous books, will be that the content will be quite generic. It is hoped that I will showcase some of the outstanding work that has recently begun to emerge in journals and at conferences. I myself have been to, and spoken at, a number of conferences in 2015. This has been enormously helpful for me in weighing up the ‘hot topics’ for my book.

Quality of care is the overriding theme of my book. In keeping with parity of esteem, I wish to address aspects of mental health in a wide context (e.g. insight, effects of sleep hygiene, anxiety and depression) on a par with physical health (e.g. infections, frailty, fall, fractures).

 

I introduced rehabilitation and recovery in book 2, and I wish to elaborate on this work in discussion of life story, reminiscence, cognitive stimulation therapy, and wider approaches.

I wish to look at the overused phrase ‘meaningful activities’, and to think about the place of these activities in both care at home and in residential homes.

I will look at the importance of relationships not only between residents and others to improve quality of life and care but also between staff to improve leadership and staff skills. I will also consider intimate relationships and sexuality, and spirituality.

All patients in all care settings in this jurisdiction are entitled to the best standards of NHS and social care, and certainly free from abuse and neglect. Intelligent use of technology is paramount for integrated care, including electronic health records and mitigation against prescribing errors. Many persons with dementia live with important co-morbidity, and technology is an important consideration in self-management.

For an integrated health and care system to work, persons with dementia should attend acute care only when necessary, care transitions should be facilitated as should patient flow and appropriate use of other healthcare settings. Careful case management including dementia advisors, dementia support workers and clinical nursing specialists, will be extremely important.

I intend to devote a chapter to end of life, particularly drawing on high quality research from palliative medicine. I wish to consider advance care planning, difficult conversations, anticipatory grief, reactions of residents, place of death, end of life in residential care, and dementia as a terminal disease.

Finally, it cannot be assumed that all persons living with dementia ultimately wish to live in a care home. Therefore, I will consider care at home, respite care, living alone with dementia; as well as possible future developments in extra care housing, smart homes, and the implications for the ‘aging in place’ policy strand.

I am hoping to cover this all in thirteen chapters in about 300 pages. I do not wish to promote any particular chain of care homes, but I would like to provide case studies of great practice. It is my intention to continue consulting as widely as possible. As regulation is a pervasive theme in this book, I intend to meet up with Andrea Sutcliffe from the Care Quality Commission. I also intend to liaise closely with people who have experienced the services in different regions of the UK including Wales, through, for example, voluntary sector organisations such as Age UK.

Dementia and ‘the numbers game’

Shibley Rahman 0 Comments

In some ways, reporting on the dementia prevalence statistics – that is, how many people are thought to be living with one of the 130 or so dementias at this time – is like reporting on the official unemployment statistics. An eager audience can quickly observe whether the overall statistics appear to be going up or down, and why.

The usual shrill of ‘every unemployed person is a statistic that represents a personal tragedy’ has its parallel with the diagnosis of dementia. The diagnosis of dementia is a significant life event not only for the person considered after all the investigations and medical history to thought to have a dementia; but also a huge event for those closest to him or her.

Policy by spreadsheet inevitably is an inadequate affair. Public health doctors are continually reminded to treat the person, not the data point. Nonetheless, the recent review of the epidemiological evidence and implications for public health policy from Prof Carol Brayne and many colleagues elsewhere was, I feel, very helpful.

The overall position is this: dementia has numerous causes, and may not be totally preventable for the most part. People disagree on the whole on the contribution of non modifiable risk factors to your chance of being diagnosed with dementia.

Parking this aside, the possibility that low education and low social class might be contributory factors to dementia are potentially interesting. This inevitably produces the ‘what about?’ arguments – in this case, what about the famous and celebrated novelist Iris Murdoch who was very educated and still developed dementia?

That there are features in your environment which not only might be said to be preventative for dementia but also relevant to the quality of life for a person with dementia is important. The co-morbidity of certain medical conditions, such as high blood pressure or high cholesterol, is relevant; so is requesting a lifelong smoker to give up smoking.

Their overall conclusion is ‘the number of people with dementia in some western European countries is stabilising, despite population ageing.’ But I suspect that it will be rather difficult for this simple message to combat the ‘dementia time bomb’ moral panic headlines. Sensational dementia reporting, even if inaccurate or bordering on fraudulent, sells copy.

If the overall numbers of dementia are going down, that might mean it’s harder to raise funds for dementia. But I think this is wholly to do with how charities big and small wish to pitch their ‘retail offer’ to potential supporters – the charity might wish to put all their eggs in the cure basket, or might wish to be actively supporting those people aspiring to live better with dementia.

Focusing on the numbers game might mean hitting the target but missing the point. I suspect a massive danger of focusing on the ‘numbers game’ is that we’re far too uncritical in considering the ‘numbers of what?’  We know that mild cognitive impairment represents a condition, not all people living with it go on to develop dementia; but how we classify the two matters.

Also, I really don’t feel we have nearly enough clarity about the numbers of people living with young onset dementia, in other words dementia before the age of 65. There are far too many swathes of policy which can be overtly ageist in approach, and I don’t want epidemiology to be one of them. We need to know about the impact (and value) of people with younger onset dementia, around the world.

People living with young onset dementia often have employment and financial considerations, young families and other social networks which are thrown into disarray with the diagnosis of dementia. Presenting a message that the overall numbers of dementia appear to be ‘stabilising’ doesn’t do much for them; and may be actively misleading, particularly if it happens to be the case that, even accounting for total population, the numbers of people with young onset dementia appear to be increasing.

On the other hand, the ‘numbers game’ does provide us with a useful metric to think about the effect of public health interventions, but then again this is in the suite of another possible instruments, such as ICHOM or ‘the cognitive footprint’.

This is definitely what might call ‘work in progress’.

Attendance allowance, ICHOM and avoidable admissions for dementia

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Almost like a ‘blind spot’ in English dementia policy is the effect of the benefits system on the wellbeing of people trying to live better with dementia and their closest ones who find themselves often being thrust into the rôle of unpaid family caregiver.

It is anticipated that there will be news of ‘ICHOM’ soon. ICHOM is the International Consortium of Health Outcomes, and will provided a much needed ‘better value’ focus on the delivery of healthcare and living better with dementia.

ICHOM bring together working groups, made up of clinicians, methodologists and outcomes experts, registry leaders, persons with conditions and their carers, social workers and allied health professionals – the multi-disciplinary team involved in the entire care cycle.

The language in policy of ‘productivity’ and ‘efficiency’ often are not the most appropriate in weighing up how good dementia care, unless one is considering the throughput of flow of the acute hospital admission possibly.

There have been some inroads into thinking about ‘unplanned hospital admissions’. Here there is a policy sensitivity in not wishing to frame the hospital admission as a ‘failure’.

The King’s Fund in a document called ‘Better value in the NHS’ helpfully identified a number of important factors which could be addressed.

There is evidence that the following interventions can help reduce unplanned admissions in the following selected patient populations: namely, for example, specialist clinics, education and self management, rehabilitation, care home liaison, care coordination, telemedicine and preventive health checks.

It is evident that there are key areas for improvement efforts: such as prevention of falls in the community, reducing admissions for ‘ambulatory care sensitive conditions’ such as COPD, urinary tract infections or pneumonia, tackling problematic polypharmacy, and reducing admissions from care homes.

The aim of ICHOM is to bring together working groups, made up of clinicians, methodologists and outcomes experts, registry leaders, persons with conditions and their carers, social workers and allied health professionals – the multi-disciplinary team involved in the entire care cycle.

This appears consistent with plans for the ICHOM ‘draft wheel’, which embraces a number of important areas potentially: neuro-psychiatric – includes anxiety, depression, behaviour, apathy, psychosis; cognitive – includes memory, orientation, verbal fluency and executive function; social – includes community affairs and relationships; daily living – includes activities of daily living, sleeping and eating; overall quality of life and wellbeing – includes autonomy, finance, enjoyment of activities, pain, dementia knowledge and understanding and life as a whole, communication; carer aspects  – includes quality of life, carer depression; falls; clinical progression including events such as confusion or delirium; and medication.

It would clearly be helpful if ICHOM does not operate in a ‘silo of its own’ in policy circles; and some effort is made to harmonise ICHOM with the social determinants of health (such as education, housing or transport), or dementia friendly communities/age friendly cities.

I am loathed to use the term ‘burden’ in relation to the carers, not because I do not want to airbrush out ill being, but out of respect for the intensely rewarding nature of caring for many. But there is no doubt that there are numerous factors which can cause strain on the carer, such as physical and mental health, or financial affairs, for example.

Some time ago, the Barker Commission from the King’s Fund reported on a ‘new settlement’ for health and social care. The Commission argued for much greater alignment between health and social care.

Critically the Barker Commission identified the Attendance Allowance as being a key benefit in the health and social care system: “It is paid to those who need frequent help or constant supervision, and the eligibility criteria for it have marked similarities to those for social care – ie, the need for support in activities of daily living such as preparing food, eating, washing, dressing, going to the toilet and medicines compliance, and whether someone is a risk to themselves or others.”

In March 2015, some infrequent research was published on the ‘quality’ of primary care and unplanned hospital admissions. This paper by Panagiotis Kasteridis  and colleagues was especially helpful as it threw some helpful light on dementia:

“This research adds to the sparse literature on the relationship between primary and secondary care for dementia patients and in particular on the ‘protective’ effect of higher quality primary care (as measured by the QOF) on emergency hospital admissions. Whilst this association does not necessarily imply the relationship is causal, we have made efforts to ensure the robustness of our methods and undertaken extensive sensitivity analyses to demonstrate our associations are qualitatively consistent. Our study quantifies the relationship using panel data to account for potential confounding effects, and is the first to explore the impact of under-diagnosis on the relationship between quality of primary care and hospital admissions. Another novel finding is that a social benefit, Attendance Allowance, was consistently associated with lower unplanned admissions (typically by around 2%) in practices where a higher proportion older people were living in income deprivation. Efforts to remove barriers to accessing social support could therefore be targeted towards these disadvantaged groups, and policy makers may also wish to investigate the level of benefit needed to prevent admissions. However, further research is needed to verify these findings and to guide policy.”

Whilst the overall tendency has to been to try to construct the narrative in ‘cost neutral’ terms if possible, in other words ideally getting a dementia friendly community without substantial financial investment, it is clear that money injected strategically into parts of the system will have a direct effect on the wellbeing of persons with dementia and carers. The rôle of the benefits system is one such area, and it would be timely of ICHOM to acknowledge their importance somehow.

It is the implementation of the law, not the law itself, which is holding back progress

Shibley Rahman 1 Comment

One of the key aspects about the law, both domestically and internationally, is that the law has to be clear and enforceable.

We can see this ‘in action’ where most of the criticisms of the National Minimum Wage have not been the way it’s been drafted, but the way it’s been implemented.

There can, of course, be ‘bad law’. Arguably, the freedom of information should contain a ‘carve out’ where public interest overrides commercial gain say for outsourced NHS providers (where surplus generation might trump safe staffing).

And so it goes on.

A lot of effort has been put into an instrument called the United Nations Convention on Rights of People with Disabilities. Under the guidance to the Equality Act, dementia is clearly a disability. Framing dementia as a disability totally alters the nature of the narrative, where the emphasis shifts from ‘friendliness’ to legal rights of people with dementia.

That rights are universal and inalienable means that it is not legally possible internationally to discriminate against somebody on the grounds of mental capacity, or to breach fundamental human rights in a disproportionate way.

Prof Peter Mittler is a very modest man, quite remarkable given his groundbreaking achievements. He has had a glittering career as a leader in putting disability on the political agenda. One of his recent speeches will give you a flavour of his work.

Mittler in fact habitually resides in Manchester. #DevoManc won’t have escaped your notice. Manchester, in particular the local areas such as Salford, has been at the forefront of living better with dementia, not least due to the massive successful work of Hazel Blears. Blears’ work has been second to none as a parliamentarian in promoting dementia in English policy.

But here Mittler makes a fundamental point which should concern us all. That instruments such as the United Nations Convention on the Rights of People with Disabilities have been known about for some time. In our jurisdiction, the governing party is about to replace the Human Rights Act with another framework, a Bill of Rights. Currently it is unclear whether the UK will remain signatories to the European Convention on Human Rights, but most legal scholars expect us to be not least because of the legal mess in devolution agreements if we left. We are, notwithstanding, signed up to the United Nations Declaration on Human Rights.

The ‘rub’ comes into the enforceability of these rights, and for people at large to take these rights seriously. I personally notice a massive sea-change on the ground, in terms of the embedding of a ‘rights based consciousness’. Clicking on the link below will take you to Prof Peter Mittler’s question at the end of Dr Dennis Gillings’ progress report for the Alzheimer’s Society annual conference (#Dementia2015). Jeremy Hughes, CEO of the Alzheimer’s Society, brings up the correct point about the “rulebook”. Kate Swaffer, as Co-Chair of Dementia Alliance International, a group consisting of and campaigning on behalf of people living with dementia, is praised in Mittler’s comment.

Link to Audioboom recording

The two cultures and the dementia revolution

Shibley Rahman 1 Comment

dark matter

 

In the Senate House, on 7 May 1959, C.P. Snow gave the seminal Rede lecture at Cambridge entitled “The two cultures and the scientific revolution”. 

One seminal passage goes as follows:

“Literary intellectuals at one pole—at the other scientists, and as the most representative, the physical scientists. Between the two a gulf of mutual incomprehension—sometimes (particularly among the young) hostility and dislike, but most of all lack of understanding. They have a curious distorted image of each other.”

C.P. Snow’s  blistering attack on the arts, promoting the importance of the scientific culture, was in the tradition of a former conflict between the arts and sciences viz Matthew Arnold’s “Culture and Anarchy” (published in 1869, viewable here on Project Gutenberg) and H.E. Huxley (in the Royal Academy of Arts and elsewhere.) Arnold’s position, defending the arts, according to Prof Simon Shaffer, Chair of the history and philosophy of science at the Department of History and Philosophy of Science at Cambridge, is defined as a “defender of human values”.

Even today, if you were to study dementia in finals at Cambridge, you would do it in the Natural Sciences Tripos Part II rather than study literary accounts of dementia (such as John Bayley’s “Iris”) in English Part II.

Late in the 19th century and onwards in England, science had developed prestige, given science improved rights to access resources on the political stage. This indeed was a real cultural change. In Arnold’s world, the laboratory is not a central hub of culture compared to the new dominant scientific movement such as John Tyndall’s “scientific naturalism”.

Triumphantly, it was announced by the world that there would be a cure for dementia or treatment by 2025. I think this is exactly consistent with this ‘scientific technocracy’ of HG Wells’ “samurai” – called “evil” by the brilliant don at Cambridge and scholar of the English essay, FR Leavis. Like Leavis, I believe that this myth that scientific technocracy demeans our overall progress on dementia and understanding the lived experiences.

It is inescapable to conclude that in England that the social care system is currently ‘broken’.

I think it would be wonderful if some resources, in addition to enhancing shareholder dividend for Big Pharma or surpluses for Big Charity, could be diverted into finding breakthroughs in treatments for dementia. But it potentially it is a smoke and mirrors job to promote the ‘cure’ culture without addressing the ‘care’ culture.

And like C.P. Snow, we’re at danger of oversimplifying the dichotomy. Technology and innovation can be viewed as the creative part of science, and might be essential in improving care in dementia; creativity is thus important to both arts and sciences.

Living better with dementia is a vision I fundamentally believe in, for example, and one which transcends both cure and care. I do happen to believe that living better with dementia is possible by innovative ways in which one might live your life with dementia (as brilliantly reported for Dr Jennifer Bute recently.)

C.P. Snow’s lecture at Cambridge in 1959 came at a time when there could have been better representation of the sciences from decision makers in Government, but even then the claim always appeared to be science appeared to be downtrodden. You can hardly claim that science is downtrodden in 2015 with such emphasis on the scientific cure. Ironically, the English government as much now (if not more) is not predominantly composed of science graduates from a diverse range of universities, but from a pool of PPE graduates from the University of Oxford.

C.P. Snow can be legitimately viewed as an “anti-arts” by me, I feel. But I think the promotion of the scientific cure in dementia in 2025 is also, too, a modern alchemy. In the same way, there was magic in the way you could convert one substance to another by varying combinations of earth, wind, fire and air, I think there still remains a hope that by varying combinations of elements in chemical potions there might be an agent from Big Charity and Big Research which could ‘turn the tide against dementia”.

But this is to elevate science to a level of sophistication it may not merit yet. Most of the Universe, predicted with Earth veering towards a “large attractor” full of dark matter in 50-60 billions time, consists apparently of invisible dark matter exerting an influence on the visible universe we can’t understand.

There’s so much we don’t understand in science and specifically the future of the universe. At the time of C.P. Snow, Paul Dirac held the prestigious Lucasian chair of mathematics at Cambridge (a post recently held by Stephen Hawking); his seminal work consolidated the birth of modern cosmology and quantum physics, and indeed attracted the Nobel Prize “for the discovery of new productive forms of atomic theory”.

There is currently no reason to believe that understanding the molecular biology of dementia is at all any different. Whereas billions of neutrinos pass through us everyday, we have no idea what is passing through all those plaques and tangles in Alzheimer’s disease forming some of those 47 million people living with dementia currently.

We do not have sufficient monies for high quality research in care and living better with dementia, including lived experiences, compared to cures for dementia. This is a national and international disgrace. I believe that we are ‘due’ a revolution in dementia, but, unlike C.P. Snow, I don’t think it will be a scientific one.

 

 

My talk on my new book at the Alzheimer’s Show (London Olympia) June 6th 2015

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Today, I was honoured to be invited to speak about my work on dementia in a session called “Meet the authors” at the Alzheimer’s Show here in London Olympia.

Thanks to Nigel Ward for organising this year’s programme, and to my co-presenters Marion and Maggie who presented their books on personal life experiences of caring in dementia. I strongly commend these books to you; “Have you seen my daughter?” and “The Gift of Alzheimer’s“.

co-authors

A recording of my talk is provided here. Thanks to Gary Marsh (@mistersquash) for recording it on an iPad; please note that the concourse of the exhibition is very noisy, so there is inenvitably a lot of background noise despite the excellent sound system.

I greatly admire Angela Rippon for promoting policy issues in dementia, but especially in inter-generational education of living with dementia.

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This of course is a key policy plank in England and around the world; like ‘women and dementia’ (the 2015 report on this from Alzheimer’s Disease International was launched at the Alzheimer’s Show yesterday.)

Prelude

Any individual’s wellbeing is more than their interaction with health and care systems. Wellbeing is not simply an absence of ill being, and many factors are known to determine one’s health in the social strata such as housing and transport.

Many phenomena are not just physical buildings, such as hospices or care homes, and it is now being increasingly recognised that they act as community hubs in the wider community. It’s become ‘acceptable’ to celebrate very good care, and is in fact now being strongly encouraged in national policy to promote good practice. All too often boundaries can get established, creating distinct silos;  sharing is “king”, but secrecy can be fatal. Even regulators are taking on the mantle of trying to advance promote good care, as well as identifying when things have gone wrong.

It’s easy to unappreciate the potency of a number of different separate strands which have converged on the potential of ‘living better with dementia’. These include, for example, developments in the law, such as safeguarding under the Care Act to mitigate against neglect and abuse, initiatives to encourage ‘integrated care’ such as the ‘Better Care Fund’, the recent public health initiatives to increase knowledge about dementia in the public (“Dementia Friends“). Also, instruments in international law, such as the United Nationals Convention for People with Disability, have set the weather, in the way that, say, the Human Rights Act, possibly about to be repealed, might not.

But troublesome faultlines remain. For example, NHS spending is notionally being ringfenced, despite increasing ‘demand’ , but social care funding has not. The budget for Health Education England is substantially more than for Skills for Care, for example, reflecting different institutional priorities between professionals and practitioners perhaps.

When somebody receives a diagnosis, it’s invariably their friends and/or family who also deal with the diagnosis as a “team effort”. While the actual disclosure of dementia can be suboptimal, and here we need to be particularly mindful of success of people from different cultural backgrounds and with learning difficulties in obtaining a diagnosis, sometimes post-diagnostic support can be diabolical.

It might be a question of knocking on various doors, such as hospital services, or social care, but without proper care coordination, the system may present itself as a higgledy piggledy mess. Whilst research into better treatments is clearly for the benefit of society, we have to be realistic about we can achieve; we are unlikely to achieve ‘a cure for dementia’, in the same way that progress for the cancers, in treatments producing virtual remission, has been piecemeal across the years.

Progress is nonetheless being made, not least in identification of key issues. For example, people presenting with younger onset dementia often are testament to the notion that dementia’s not only about memories; some persons with ‘posterior cortical atrophy’ get driven round the houses seeing opticians for their complex visual problems, before seeing a cognitive specialist.

Above all in policy, we do need to learn from each other, and top of this must be the living experience of people living with dementia and those who find themselves in a caring rôle, often relatively underreported with little formal introduction from training. There’s been a lightbulb moment in policy, where it’s been OK to acknowledge that there’s space for all of us; for example, dementia advisers do different things to dementia support workers, or clinical specialist nurses. Not everything is clinical (indeed the policy drive has been to rely less on drugs where drugs are inappropriate). Different parties have different expectations, such as in the education and training of others, ability to enable and protect carers and people with dementia with coping strategies, or attention in specialist areas such as end of life.

A system oriented at wellbeing necessarily expects you should look at what people can do, rather than punish them for what they cannot do. I myself am now physically disabled, so the idea of reablement and rehabilitation is one I philosophically enrol to. And such an approach has to be joined up; and personalised. We all prefer have own clothing tastes, reflecting our experiences in the present and future. You’d never embark on making people all dress the same; so therefore an approach which totally disregards personhood is now totally unacceptable.

We’ve come a long way, but I can’t emphasise enough how I feel ‘experts by experience’ must be in the driving seat in service design, even including ‘new models of care’ and research priorities. These issues are not easy, often controversial, but I feel strongly we should not “shy away” of confronting them.

Remarks about this title

‘I congratulate Shibley on writing a book that brings together so many of the challenges facing people who are living with dementia, their families, and professionals from many different disciplines, and takes them forward in a critically thoughtful way. This is a book that truly points the way to a future where living better is a reality for everyone affected by dementia.’

– Beth Britton, Freelance Campaigner, Consultant, Writer and Blogger

(bethyb1886)

‘This new book is an immaculately researched guide to living with dementia in England in the 21st century, covering the subject from policy to lived experience, but always with consideration and compassion. There is no better introduction to the challenges and complexities that dementia brings to individuals, families and society.’

– Geoff Huggins, Director of Health and Social Care Integration, Scottish Government

(@GeoffHuggins)

‘This book is informative and challenging in equal measure. It not only provides a thorough analysis of the issues currently facing dementia care, but it also offers a refreshing and thoughtful critique of the many challenges. Each chapter carefully combines research evidence, practice issues and policy influences, and contextualises these within the experience of those living with dementia, including their carers. Whilst this book is complex and thought-provoking – I believe it is a highly welcome counterbalance to current thinking on how to improve the lives of all those who are affected by dementia. It will force the reader to challenge their own thinking about dementia, not just as an illness but as a social construct, and as such I would highly recommend it.’

– Rachel Thompson, Professional & Practice Development Lead for Admiral Nursing, Dementia UK

(@raheli01)

‘Shibley Rahman follows his first brilliant book on dementia with this fascinating publication, containing insight and empathy in equal measure. This book will help readers – health professionals and the public alike – to understand people in their lives with dementia, guiding you through everything you ever wanted to know about dementia and could possibly want to ask. Shibley guides you through the challenges of caring for people and living with dementia. He doesn’t shy away from the topics that are uncomfortable, but he also gives space to examples of good living and practice that leave the reader with hope and positivity.’

– Jenni Middleton, editor, Nursing Times

(@nursingtimesed)

‘I commend Shibley for this valuable addition to the current thinking and discussion on what it is to live with dementia. This text builds quite significantly on his original work and continues to challenge professionals on issues of importance for families affected by dementia. I find his frank and open style refreshing, unreserved in his willingness to question both the semantics used in practice and assumptions that are too easily made on what it might be like to live with dementia.’

– Karen Harrison-Dening, Senior Fellow at Institute of Mental Health, University of Nottingham

Other information

Living Better with Dementia: Good Practice and Innovation for the Future

Shibley Rahman (forewords by Kate Swaffer, Chris Roberts and Beth Britton)

 The Amazon page (yet to be fully updated) is here.

What do national dementia strategies, constantly evolving policy and ongoing funding difficulties mean for people living well with dementia?

Adopting a broad and inclusive approach, Dr Shibley Rahman evaluates critically existing dementia policy. He tackles head-on current and controversial challenges at the forefront of public and political discourse, such as leadership, access to services for marginalised groups, stigma and discrimination, integrated care, care and support networks, rights and budgets, personalised medicine and the use of GPS tracking. Drawing on a wealth of diverse research, with voices from around the world, he also identifies positive avenues for living better with dementia, such as creativity, and highlights pockets of innovation and good practice to inform practical solutions for the future.

Shibley Rahman graduated in neuroscience and medicine from Cambridge University. There he also completed his PhD in frontotemporal dementia, commencing a lifelong interest in the timely diagnosis of dementia. He also trained to postgraduate level in medicine, law and business. Shibley speaks regularly about dementia diagnosis and post-diagnostic care, researches wellbeing and advocates rights-based approaches.

ISBN 978 1 84905 600 7

It’s time we spoke about ‘mild cognitive impairment’ in relation to dementia?

Shibley Rahman 1 Comment

pillsDiagnosing any clinical condition is arbitrary, as it depends upon a person meeting certain criteria.

For brain disorders, the extent to which people meet certain criteria or not might mean they satisfy the diagnosis of ‘dementia’. The word ‘dementia’ has a public perception of its own, that’s why clinicians are very aware that when this diagnosis is disclosed it’s effectively being disclosed to a person’s friends and/or family as well.

I myself am physically disabled, and yet I am able to live well with my physical disability. I see double ‘all of the time’, due to the meningitis I lived through in 2007. I am able to pay taxes, and do my shopping, on my own. As such, I am ‘functionally independent’.

If I have a memory problem, or mild problems in cognition, but which are not so bad, and certainly not bad enough to impinge on my everyday life, I might be classified as having a ‘mild cognitive impairment’.

To put it succintly, “mild cognitive impairment” is a clinical diagnosis in which deficits in cognitive function are evident but not of sufficient severity to warrant a diagnosis of dementia (Nelson and O’Connor, 2008).

That’s why putting the diagnosis in primary care down to a simple question ‘do you have problems with your memory?’ can often lead to a doctor seeking confirmation bias for making the diagnosis of dementia, when the diagnosis might not be dementia at all. In an older person, it might be the mild amnestic syndrome, or even depression.

In fact, looking at the trials as indeed Christa Maree Stephan and colleagues did in 2013, there’s a lot of scope of fuzziness in whether or not a person might receive a diagnosis of ‘amnestic mild cognitive impairment’ (“aMCI”).

This is a figure reproduced from their paper (under the ‘Creative Commons’ licence).

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When, a few years back, some clinicians revised the criteria for the aMCI, they were aware that many people with dementia would become re-classified as having aMCI.

As I have stated many times before, however, the evidence of progression of MCI (mild cognitive impairment) to DAT is currently weak. It might be attractive to think that MCI is a preclinical form of dementia of Alzheimer Type, but unfortunately the evidence is not there to back this claim up at present: most people with MCI will not progress to dementia even after ten years of follow-up (Mitchell and Shiri-Feshki, 2009).

When NHS England decided to launch a policy of incentivising dementia diagnoses, most clinicians knew this was playing with fire, as it was setting people up to receive incorrect diagnoses of ‘dementia’. My colleague Dr Martin Brunet once elegantly referred to ‘the cobra effect‘, in a workshop I attended at the King’s Fund on their leadership in dementia day.

Ken Clasper recently brought up the subject in a blogpost called ‘Rediagnosis from one dementia to MCI’ on his popular blog ‘Living well with Lewy Body Dementia’.  Ken in this blogpost successfully touches upon the disorientating effect that this re-diagnosis can have.

I watched reaction to this blogpost on the social media, and many of the opinions were in the philosophy of clinicians ‘not doing their job’ properly. In fact, I have seen this approach taken regularly in recent years in videos instigated by caregivers with a subtext of ‘time to teach the medics’. And I certainly don’t deny that there is plenty of scope for teaching the medics on many things.

But one would think that, if a diagnosis needs to be changed, then it is better that the medic swallows professional pride and is open with the new diagnosis. There are valid reasons why the diagnosis might be changed, if only the diagnostic criteria have changed, or the symptoms of a person thought originally to have dementia are different to those expected.

And should medics be blamed for having incorrect diagnostic tools? Possibly. But I remember when I was a junior the eminent neuroradiologist at the time at the National Hospital for Neurology and Neurosurgery emphasising that you can never make a diagnosis of dementia on CT alone. There are people who have shrunken brains due to ‘normal ageing’. And likewise, I’ve seen many people who later develop clear-cut dementia who’ve had normal brain scans to begin with (particularly for some certain types of dementia, such as the behavioural variant of frontotemporal dementia).

But of course neither can clinicians be blasé about the diagnosis of dementia. One would have thought that England, which wishes to close the ‘dementia gap’ (i.e. finding the numbers of people who have dementia who remain undiagnosed with dementia), should wish to put resources into people who can make the diagnosis.

You’ll see from the table above it’s not that reliable to say for certain whether somebody’s developing a dementia from a ten minute chat in a busy GP surgery. You’d be fooled into thinking from the popular media that most GPs either do not want to make the diagnosis of dementia, or are incapable of doing so. This is of course a massive professional slur on GPs, but sadly had become an increasing trend as vindictive criticism of medics, as well as criticism of medics, has become a popular past-time.

The aphorism goes ‘the diagnosis of dementia is not meant to be a label, and it certainly is not meant to be disabling but enabling’. People’s lives are changed with a diagnosis of dementia inevitably, especially since the media have been far more successful in promoting the programme ‘Dementia Friends’  than in promoting the need for service provision from trained clinical specialist nurses or promoting the idea that it is possible to live better with dementia.

The mood music has changed. We’ve got another thrust of policy where we are all drug trial guinea pigs now. And many people have vested interests in promoting the idea that there is a pre-symptomatic phase of dementia, called “pre-dementia”, which is amenable to treatment. This of course is part of the whole problem of the over-diagnosis trend which Dr Iona Heath has brilliantly discussed.  Similarly, I feel Prof John Yudkin has been right to draw attention to the similar phenomenon of ‘pre-diabetes‘, which many of us feel serves the function of opening up new markets, patients who can become customers for drugs. Deborah Orr’s article on over-medicalisation of illness in general is brilliant, and I strongly commend it to you.

In a nutshell, it’s time we spoke about ‘mild cognitive impairment’ in relation to dementia? A certain bandwagon in dementia policy has gone ‘too far too fast’. This was a favourite catchphrase of Ed Balls – and look what happened to him.

 

 

Reference

Christa Maree Stephan B, Minett T, Pagett E, Siervo M, Brayne C, McKeith IG. Diagnosing Mild Cognitive Impairment (MCI) in clinical trials: a systematic review. BMJ Open. 2013 Feb 4;3(2). pii: e001909. doi: 10.1136/bmjopen-2012-001909. Print 2013.