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My book 'Living well with dementia' wins first prize for health and social care in the 2015 BMA Book Awards

Recently, my friends have been trying to motivate me to tell me that I should consider writing and researching about the quality of life as a full time job. I had recently been feeling as if my work was being largely unnoticed, compared to the usual players who frequent the conferences and the limelight. So it genuinely was a massive shock that my first book ‘Living well with dementia: the importance of the person and the environment’ was judged as first in the category of health and social care for the BMA Book Awards 2015. The book was published in January 2014, and remains one of the few books which gives an overview of the living well with dementia approach in English dementia policy. It’s fair to say that medics exhibited challenging behaviour in reaction to it, as it was the counterpoint to their comfortable medical model of dementia. I instead set the scene effectively for my second book ‘Living better with dementia: good practice and innovation‘ which is a more discursive look at the social model of disability, and its implications for domestic and global policy. I once told one of my regulators, the General Medical Council, that I had received excellent feedback on the book including from people living with dementia. I should like to mention particularly Kate Swaffer and Chris Roberts, who have always remained clear, from the outset, that they enjoyed the book and thought it to be of very high quality. This has kept me highly motivated, even when I have been feeling frustrated at the whole initiative.

 

 

I should like also to thank Prof John Hodges, Prof Facundo Manes and Sally Ann Marciano, who kindly did me the honour of writing the Forewords for this book. They can be viewed here.

 

The BMA Medical Book Awards take place annually to recognise outstanding contributions to the medical literature.

Prizes are awarded in 21 categories, with an overall BMA Medical book of the year award made from the category winners.

The judging panel awards books for their applicability to audience, production quality and originality.

The BMA Medical Book Awards were held on Thursday 3 September 2015

Download the 2015 Book Awards ceremony programme

The full list of prizes by category is here.

 

 

Category result

Health and social care

Community care, health promotion, health prevention, management, health services, medico-politics, medico-legal medicine, social medicine.

First prize

  • Living Well with Dementia: The Importance of the Person and the Environment for Wellbeing
    Shibley Rahman—Radcliffe Publishing, January 2014. ISBN: 9781908911971. £29.99

Highly commended

  • Evaluating Improvement and Implementation for Health
    John Øvretveit—McGraw-Hill Education/Open University Press, August 2014. ISBN: 9780335242771. £26.99
  • Human Factors in Healthcare: Level 1
    Debbie Rosenorn-Lanng—Oxford University Press, February 2014. ISBN: 9780199670604. £24.99
  • Seeing Beyond Dementia: A Handbook for Carers with English as a Second Language
    By Rita Salomon—Radcliffe Publishing, January 2014. ISBN: 9781846198922. £21.99
  • The Cities Report
    by UNAIDS—UNAIDS, December 2014. ISBN: 9789292530662. Free
  • The Sociology of Health and Medicine: A Critical Introduction 2nd Edition
    by Ellen Annandale—Polity, August 2014. ISBN: 9780745634623. £22.99

 

 

What the judges said:

Living Well with Dementia: The Importance of the Person and the Environment for Wellbeing

Shibley Rahman – Radcliffe Publishing, January 2014 ISBN: 9781908911971 £29.99

All public and health care professionals, patients, their families and friends

This unique guide provides a much needed overview of dementia care. With a strong focus on the importance of patients and families, it explores the multifaceted meaning behind patient wellbeing and its vital significance in the context of national policy. Adopting a positive, evidence based approach, the book dispels the bleak outlook on dementia management. Its person-centred ideology considers fundamental areas such as independence, leisure and other activities, and end-of-life care – integrating the NICE quality standard where relevant. It also places great emphasis on patient environment including practical home and ward design, the importance of gardens, and sensory considerations. The objective is to examine the number of people in the UK who currently have dementia and the cost that this places on the health care system. In addition to analysing the scale of this condition, it touches on the experiences of a person with dementia and how this effects their family, friends and those caring for them in an effort to prepare those facing this diagnosis. This unique guide provides a much needed overview of dementia care. Offers a highly practical and unique assimilation of theory and patient-centred practice.

“I would recommend this book 100%. It just makes sense to read. This will appeal to so many professionals going to be involved in the care of the elderly. And anyone who is doing research in this field should go through this book too. It brings together so many aspects of dementia care under one setting: an amalgamation of resources and guidelines. This book is targeted at anyone who is interested in public health, end-of-life care, dementia management and anyone in geriatrics really. It is a contemporary evidence-based textbook which brings together the concept of ‘wellbeing’ in the field of dementia care. This book is a really good read for any clinician who deals with elderly patients as it really opens your eyes to a the outside factors which play such a massive role in the care of the patient, such as the wellbeing of the carer, the psychological aspects of care, the public health perspective, economic aspects and so on. It also gives really thorough reference lists for every chapter so that it is very easy to go in to read a chapter and then look up the data to support it. It is an adequately easy read, there are many definitions. The layout of the book makes it easier to look up specific chapters without having to read everything before, but it also reads well if you read the whole book. I think this book would work well for anyone who is writing a dissertation, public health, or anyone who is doing a presentation on this topic as it is a very resourceful and complete book. The book really goes through all its objectives in a very clear and thorough manner. It is about the multifaceted approach to dementia care, and how to maintain this wellbeing of the patient, care changes, as does requirements and expectations as the disease progresses. As clinicians there are many things we can take from this book and apply to daily practice. For example, when a patient is been seen, it would be worthwhile making sure that the carer/family member is also managing as they found that the ‘psychological health of carers of people with dementia was impaired with social interaction and recreation most affected’. It is also a very good reminder for anyone who already practices well. The thing with dementia care is that, medical textbooks only really cover the types, pathologies, diagnosis and management where, really the contents of the whole of this book comes under a small paragraph as ‘social care/financial care/respite care/end-of-life’. But in reality, it is this whole idea of the wellbeing of the patient and their support network that we are working towards, and it does not stop at diagnosis and sending them away with a few things to take and do. This book opens your eyes how extensive dementia care can be. It is a complete text on the multifaceted approach to wellbeing although order to make it 100% complete, maybe a chapter on the classic dementia signs, symptoms, progression, pathologies, diagnoses, treatments.”

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Conferences for dementia or simply "give us your money"

When I told an events officer at an event on government policy in London recently that I literally could not afford to go to the conference, as I was not employed, I was told I did not qualify for a discount. But I was told to consider still going ‘as it was a great chance to network’. I decided not to go.

Actually it happens that I know quite a bit about the literature in dementia policy both here and abroad, so I know exactly who’ll be worthy of featuring in my final book on dementia – and who won’t.

I am not vindictive, but I have totally become underwhelmed by conferences. Like political conventions, speakers tend to be uniformly on message, with about as much conviction of a newsreader. The questions/answers, if they exist, are very constrained and are not a decent forum for discussion.

I actually don’t know what the business model is in offering the same speaker in engagement and empowerment in dementia or neuropsychopharmacology every time you go to a conference, regardless of venue, year or month.

It would make much more sense to rotate various speakers. For example, if a presentation is based on empirical data, it might be good for members of the research team to take turns in presenting findings.

Last week, I moaned about why I had not been given an opportunity to participate in a meeting in London. As it happened, the social media presence of the meeting was totally non-existent bar a handful of bland information-giving tweets.

I was told that should I wish to secure attendance at future events I should get my publishers to produce a stall where I could exhibit my and other books.

I am totally wholly convinced that dementia conferences are barely educational, in that there is nothing you discover there which you couldn’t discover from a good Google search. As for meeting people, I think it’s a long time – if it ever existed – since the days when one would arselick to get the equivalent of an internship or similar.

And the people running the events tend to be entirely clueless too. I have found many of the experiences similar in pleasantness to ringing a call centre in asking for a refund for an “off” pint of milk.

Where is the equity in people who can’t afford to go to dementia conferences, but who are striving away, not being able to contribute?

More importantly, though, what about the inequity of having an expert in engagement and empowerment or dementia friendly communities take up a slot at the expense of someone actually living with dementia who is very keen to present? This mistake has happened on very many occasions, to the point that it has become common practice.

When I recently commented on the social network Twitter that it was the ‘same old same old’ people in our dementia conferences, I was uniquely advised by somebody in Canada to go to Canada where it was also the ‘same old same old’ people – but different people.

This does not seem like a bad idea – taking, effectively, a sabbatical from conferences. But I can achieve the same by simply not going to conferences.

I don’t get it why the same field of dementia, like failed biomarkers, makes an appearance at the same conference every year, and yet my own field living better with dementia or quality of life never gets a look-in.

I was recently told that people living with dementia, who I think have much to offer in terms of their unique life experiences, can only ever appear at some of these conferences once. Wtf? Is this for real?

As it happens, I think the business model of dementia conferences is entirely sustainable, as it is, to all intents and purposes, not a meritocracy – but a “chumocracy”.

So it’s time to stop this profit making chumocratic racket – it is now a formidable barrier to forming policy.

But seriously – we should have an open debate about the ethics of dementia conferences, as well as the business model. Is it right that some speakers with big grants appear so regularly, with the same backing from the same publishing companies, so they utterly crush all intellectual opposition?

We can do better than this.

Rant over – and breathe.

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#WorldAlzheimersDay – who is protecting whom?

Assessing risk is a critical part of English dementia policy at all levels. I again found myself talking about risk as I saw responses to World Alzheimer’s Day which was yesterday on September 22nd 2015.

I don’t especially like the term ‘wandering’ for people with dementia. This term, like ‘challenging behaviours’ has become seemingly legitimised through the hundreds of papers on it in the scientific press, and the grants no doubt equivalent to hundreds of thousands of dollars probably. I think the term, intentionally or not, attributes blame. And as I moot in the tweet below, this is potentially a problem, especially one considers that a dementia charity should not ideally be fundraising out of sheer fear.

Tweet 1

Don’t get me wrong. I think charities have an incredibly important part to play, and they do, in educating people about dementia; and generally ‘raising awareness’ howeverso defined. Take for example this helpful tweet from the Alzheimer’s Disease International containing a relevant infographic about the scale of the dementia epidemiology.

Infographic

I had a hunch that something was very awry about yesterday when my colleague Simon Denegri tweeted something which caught my eye. Let me introduce you to Simon. He’s Chair, INVOLVE, NIHR National Director for Patients and the Public in Research, and, importantly, a nice guy.

The tweet, and the main subject of the research, is pretty self explanatory in fact.

denegi

The point Simon raises is worth thinking about, I feel. Is updating the epidemiology of dementia every year, nay every month, or even every week, an effective way of genuinely raising public awareness – or is it rather a lazy way to campaign on it? Obviously, playing devil’s advocate, one should argue that this main issue should be raised until something happens, but with a cure for dementia a long way distant it seems that this option is not likely.

So how about offering some solution instead? In other words, having scoped the problem, why not offer hope instead of fear through the huge volume of research in improving quality of life for people living with dementia and carers. Here’s the thing: there are 850,000 people living with dementia at the moment currently, and there’s got to be something in it for them with all this coverage.

I call fixating on the ‘tsunami’, ‘time bomb’ or ‘tidal wave’ “the shock doctrine” to make you want to dig into your deep pockets, to make you donate to a dementia charity. BUT  – with social care funding on its knees, having not been ringfenced since 2010 – is this actually a luxurious response to a rather serious immediate problem? Long before #DementiaWords ‘got sexy’, I presented my poster (PO124) on the hyperbolic language used in the G8dementia proceedings, in the Alzheimer Europe 2014 conference.

Here’s the rub.

Jeremy Hughes and the Alzheimer’s Society have been hugely successful with the ‘Dementia Friends’ campaign, which has seen a roll-out of information sessions on the basics of dementia for the whole country. Yesterday was a good opportunity to talk about that.

Dementia Friends

But meanwhile Alzheimer’s Research UK, which indeed does formidable work for the research infrastructure on dementias in the UK, rolled out this in a blogpost yesterday. The phraseology of the remark, “At Alzheimer’s Research UK, our hope is for a different kind of future, one where future generations will be free of this life-shattering condition”, is the opposite to one of the central messages of Dementia Friends, that ‘it is possible to live well with dementia’.

shattering

I don’t, of course, want to downplay the huge significance of the disclosure of the diagnosis of dementia as a life event for all those involved, not least the direct recipient of that diagnosis.

Sadly, we’ve been here before. All of these came to the fore when Richard Taylor PhD, one of the founding members of Dementia Alliance International, (DAI), pleaded, “Stop using stigma to raise money for us”, in the Alzheimer’s Disease Conference in 2014 in Puerto Rico. Actually, the DAI, a group run by people living with dementia, has been working with Alzheimer’s Disease International to make things much better, in no small part at all due to the gigantic efforts of its current Chair Kate Swaffer (@KateSwaffer).

All of this leads to me wonder who exactly is protecting whom? I wouldn’t go so far as to say that the public needs protecting from large dementia charities, but the sway they hold on policy is not inconsiderable; whether this is on the cure v care resource allocation in dementia, or whether there should be specialist nurses as well as dementia advisors (as I argued this year both in the ADI and Alzheimer Europe conferences).

There’s no doubt, as regards safeguarding issues, that people with dementia need to protected from risk where it is proportionate to do so. As I have long argued, you need to embrace risk to live well with dementia. But it is worth thinking about on whose part we are negotiating risk? Damian Murphy’s excellent blogpost yesterday emphasises how we cannot necessarily assume that carers and persons with dementia have the same (or even similar) viewpoints: this is directly relevant, say, on whether a person with dementia with a carer gets a GPS tracking device?  (I duly anticipate and expect Damian’s contribution here, by the way, to be seminal one, by the way.)

A long time ago when I was reading some of the management literature, I was really impressed by a paper to which Prof Michael Porter contributed on strategy and society (co-author Mark Kramer) in the Harvard Business Review.

Mark in a slide once summarised four crucial tenets of observing this re-articulated corporate social responsibility thus.

Kramer

I, for one, would like to see all campaigning done by the dementia charities seen through this prism; and also bearing in mind the clinical, if not societal, question cui bono?

 

 

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#WorldAlzheimerDay 2015

There are about 47 million people in the world with dementia. It’s thought that there are about 850,000 people living with dementia in the UK alone.

Depending on how you count them, there are about 130 different causes of dementia. By far the most common cause is Alzheimer’s disease, which early on causes difficulties in short term memory, learning, attention, and finding your way around.

Dementia, caused by various conditions of the brain, can affect anyone at any age.  As I keep on telling my friends, anything can happen to anyone at any time, and this is theoretically the same for dementia (the risk of living with dementia gets higher as you get older). Arbitrarily, dementia occurring before the age of 65 gets called ‘young onset dementia’, but the cut off is totally arbitrary.

Common other causes of dementia, a progressive condition, include vascular dementia, diffuse lewy Body disease, and frontemporal dementia.

Some dementia runs tightly in families. In some there’s no family history at all. Roughly speaking, non-modifiable risk factors account for a huge amount of dementia; but there are important risk factors for dementia (e.g. the ones that cause cardiovascular disease). There’s no hard and fast rule about protecting yourself against dementia – for example, even highly educated individuals have developed dementia such as Oxford graduates Harold Wilson and Margaret Thatcher.

No two people living with dementia are the same. Even your perception of someone living with dementia is likely to be different to the perception of the same person by someone else. Dementia can affect any of the functions of the brain, including perception, planning, working memory or language. A dementia doesn’t have to be heralded by memory problems.

There’s a lot of it about. You’re very likely to know someone who knows someone who knows dementia at least. Sadly there are currently no treatments which have a longlasting effects on symptoms or delay disease progression. But this is changing – there’s currently a worldwide hunt for better treatments by 2025. All around the world, more money is being put into research, for cure, care, prevention and wellbeing, but such funds have typically far lagged behind those for cancer or HIV/AIDS for example.

You can do a lot to help by finding out a little bit about dementia;  or finding out about (and joining) initiatives such as the Dementia Action Alliance, or Join Dementia Research. If you’re living with dementia, you can join the Dementia Alliance International. If you’re a family carer or organisation in England, you can join TIDE “Together in dementia everyday”. Or you can support one of the many charities for dementia, and take part in ‘Dementia Friends‘ a national programme to raise basic awareness of dementia for the general public.

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Meeting Tommy Dunne

 

 

 

 

I met Tommy Dunne, I think, the first time I met Chris Roberts. This was at the Alzheimer’s Show in Manchester.

I met Joyce and Jayne there too.

Whilst the first time I met Tommy he told me how he received his diagnosis of dementia, I think our conversations have since then covered quite a range of topics. There’s absolutely no doubt that Tommy loves Everton; and Liverpool; and golf.

Tommy will explain to you, if the conversation comes up, how he was given the diagnosis with the words: “The good news is that you don’t have bipolar; but the bad news is that you have young onset dementia.”

There’s no reply to that really. I think as more research gets done we’ll uncover that there are many more people beneath the age of 65 who are living with dementia.

I have found all the individuals I’ve ever met with young onset dementia very interesting, in fact, but all very different. Invariably, they tell me how their diagnosis totally turned upside down their social and working lives, including interaction with friends and the employer.

Tommy mentions in this video (above) how his dementia was misdiagnosed as a mood disorder. I have found this quite common in fact, and on deeper inquiry I found this to be quite a consistent strand in the literature too.

This means that people with young onset dementia, including Alzheimer’s disease or vascular disease, get told they are primarily depressed or manic by the medical profession. Not only are they potentially given the wrong management, but they are also denied the actual correct way to progress.

There is no ‘right or wrong’ answer on the correct way to progress, but generally the approach is to value what people can do rather than home in on what people can’t do. This means playing to people’s strengths, not weaknesses.

An ability to live better with dementia is of course the essence of a ‘dementia friendly community’. It will have given Tommy enormous pride, as it will have done for Gina Shaw who is equally lovely, to receive one of the ‘Dementia Friendly Awards’ from the Alzheimer’s Society for the SURF project.

The best way to learn about what it’s like to live with dementia is simply to ask as many people you can about living with dementia. People closest to them, including friends and family, will give you a complementary perspective too. This is not information you can get from any books.

Meeting the person rather than fixating on the disease is not, however, to ignore the health and wellbeing needs of that person. People living with dementia and carers also get ill like everyone else, say with an acute exacerbation of bronchitis or asthma, and are entitled to the best care from the NHS too.

It’s an honour to have met Tommy and Joyce. The work that they both do to promote an understanding of dementia is incredible.

It’s not hyperbolic for me to say that I’m proud I know them.

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Dementia care has to improve, but the NHS can't do it on its own

With 850,000 people living in the UK, and 47 million people worldwide, with dementia, the challenge for care and support services after a diagnosis is colossal.

There is actually no such thing as ‘dementia care’. There are about 120 or so different clinical diagnoses which may result in a dementia, a progressive condition of the brain, different from ageing, which can affect any of the functions of the brain. Each person responds differently to a dementia, and your perception of that person is very likely to be different from that of somebody else.

On the whole, dementia care irrespective of care settings should improve, but islands of great care do exist. The big issue is how to share this good practice, and the clinical regulators have been latterly been moving into the territory of improving quality of care through recommendations. Offloading improvements in care onto the regulator would be a mistake though, and costly, because how staff operate effectively in teams and have the right leadership is a matter for concern.

The general public need to have confidence and trust in people carrying out care. That is why the recommendations such as a certificate for carers have to heeded carefully. There is, unfortunately, a long and consistent history of recommendations not being implemented, for example the Francis reviews.

It is clear that the NHS cannot turn things around alone. There’s a postcode lottery currently of how well people living with dementia get treated in hospital, and also their success in entering or leaving hospital.

The funding in social care, in not being ringfenced since 2010, has been falling since 2010. This is likely to result in yet another crisis for the NHS, but politicians have long been screaming ’24 hours to save the NHS’. It would be wrong, however, to view social care as having to bail out the NHS from trouble.

Social care has a pivotal rôle to play in promoting wellbeing and to ensure that people with dementia are not discriminated against in the provision of local services. One of the biggest fallacies about ‘dementia friendly communities’ is that it is cost neutral. Local authorities are required to invest money in improvements, if services are to comply legally with a requirement for reasonable adjustments under current equality legislation.

Dementia as a long term condition is important for a number of different reasons. It places demands on both the person living with dementia and the person who is closest, friend or family member. It is also both a physical and mental health issue simultaneously. Therefore, having proper plans ahead of crises, involving input from different disciplines, is much better than acute admissions (which will also sometimes be necessary.)

People living with dementia also get ill with conditions other than dementia. It would be a neglect of duty for persons with dementia not to be given access to an acceptable standard of NHS care, whatever the care setting. A person with dementia might get depressed, might fall, might sustain a fracture, or might also have an infection.

Persons with dementia having other illnesses (‘comorbidity’) tend to worse in outcomes than those persons without dementia. They also tend to stay longer in hospital for the same event, such as an acute exacerbation of pneumonia.

The voluntary sector has a crucial rôle to play in the provision of dementia care and research, and building capacity of the voluntary sector will help to build improvements in dementia care.

There is a need for dementia advisors and dementia support workers, but there is also a desperate need for clinical nursing specialists in dementia.

In the same way that research funds for cancer far outweigh those for dementia, the kudos and investment in clinical nursing specialists in cancer, from Marie Cure and the Macmillan, is staggering.

It would be arrogant of the medical profession to say that shared decision making is inconsistent with the use of evidence based medicine, as if patients of the NHS are incapable of making the best evidence-based decisions.

Care pathways have hugely helped to decrease the uncertainty in cancer, and their use in cancer have been a spectacular success.  When most people receiving a diagnosis from their GP feel utterly bewildered, a war against care pathways is utterly inappropriate.

The NHS needs to be able to work with the voluntary sector, in improving the training and standards of care for people living with dementia and carers. For some, it will be difficult to give up deeply entrenched views about the doctor-patient relationship, but I strongly believe this would be dangerous. Shared decision making is hard to escape when you consider that the health and wellbeing of a carer can be a major factor in determining whether a person with dementia enters a residential care setting.

The NHS and social care need to be given the right resources to succeed, but likewise all parties need to be able to sit down round a table to work out how they can best benefit a person with dementia. In time, people from different specialties, such as housing or transport, will need to sit at this table too. Persons with dementia remain persons, whether or not they are patients, and the NHS should be ready to meet their needs.

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References for my last book 'Enhancing health for living with dementia: care homes and care at home'

The references are given as below. This will give you a good flavour of the topics I wish to cover in my final book.

I am honoured that the Forewords to my book will be written by Prof Sube Banerjee, Chair in Dementia at Brighton and Sussex Medical School, Lisa Rodrigues and Lucy Frost.

 

stub

 

Alderwick, H, Robertson, R, Appleby, J, Dunn, P, Maguire, D (on behalf of the King’s Fund (2015)) Better value in the NHS The role of changes in clinical practice. http://www.kingsfund.org.uk/publications/better-value-nhs

 

Alldred DP, Standage C (2011) Medication errors in care homes. Nursing Times; 107: 24, early online publication.

 

Alzheimer’s Society (2015) Dementia 2015: aiming higher to transform lives. http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=2700

 

Bahar-Fuchs A, Clare L, Woods B. Cognitive training and cognitive rehabilitation for persons with mild to moderate dementia of the Alzheimer’s or vascular type: a review. Alzheimers Res Ther. 2013 Aug 7;5(4):35. Review.

 

Banerjee S. Multimorbidity–older adults need health care that can count past one. Lancet. 2015 Feb 14;385(9968):587-9.

 

Bartlett, P. Sex, Dementia, Capacity and Care Homes Liverpool Law Rev (2010) 31:137–154 DOI 10.1007/s10991-010-9077-6, available at http://eprints.nottingham.ac.uk/1440/1/Sex_Capacity_and_Care_Homes_(published_version).pdf.

 

Burns, A. (2014) Commentary by NHS England: Don’t let care home residents slip through the dementia net – Alistair Burns https://www.england.nhs.uk/2014/12/18/alistair-burns-12/

 

Cancer Research UK (2015) Achieving world-class cancer outcomes: a strategy for England 2015-20. http://www.cancerresearchuk.org/sites/default/files/achieving_world-class_cancer_outcomes_-_a_strategy_for_england_2015-2020.pdf

 

Care England (2015) Care England calls for funding to support Living Wage (published on June 25, 2015) http://www.careengland.org.uk/care-england-calls-funding-support-living-wage

 

Care Quality Commission (2014)  Cracks in the pathway. October 2014. http://www.cqc.org.uk/sites/default/files/20141009_cracks_in_the_pathway_final_0.pdf

 

Elliot V, Williams A, Meyer J. Supporting staff to care for people with dementia who experience distress reactions. Nurs Older People. 2014 Aug;26(7):22-6. doi: 10.7748/nop.26.7.22.e616.

 

Fiske, J., Griffiths, J., Jamieson, R., Manger, D. (2000). Guidelines for oral health care for long stay patients and residents. Gerodontology, 17, 5564.

 

Goodman C, Davies SL, Gordon AL, Meyer J, Dening T, Gladman JR, Iliffe S, Zubair M, Bowman C, Victor C8, Martin FC. Relationships, expertise, incentives, and governance: supporting care home residents’ access to health care. An interview study from England. J Am Med Dir Assoc. 2015 May 1;16(5):427-32.

 

Guss, R. and the British Psychological Society (2014). Clinical Psychology in the Early Stage Dementia Care Pathway (Collated on behalf of the Faculty of the Psychology of Older People. A collaboration of people living with dementia and the Dementia Workstream Expert Reference Group.) https://www.bps.org.uk/system/files/user-files/DCP%20Faculty%20for%20the%20Psychology%20of%20Older%20People%20(FPoP)/public/clinical_psychology_in_early_stage_dementia_care_pathway.pdf

 

Health Foundation (2012) A strong call to action. http://www.health.org.uk/newsletter/challenge-improve-medication-safety-care-homes#sthash.i6DVulZf.dpuf

 

Humphries R. Integrated health and social care in England–Progress and prospects. Health Policy. 2015 Jul;119(7):856-9.

 

Iliffe S, Davies SL, Gordon AL, Schneider J, Dening T, Bowman C, Gage H, Martin FC, Gladman R, Victor C, Meyer J, Goodman C. Provision of NHS generalist and specialist services to care homes in England: review of surveys. Prim Health Care Res Dev. 2015 May 5:1-16. [Epub ahead of print]

 

Johnston B, Rogerson L, Macijauskiene J, Blaževičienė A, Cholewka P. An exploration of self-management support in the context of palliative nursing: a modified concept analysis. BMC Nurs. 2014 Jul 23;13:21.

 

Jones L, Candy B, Davis S, Elliott M2, Gola A, Harrington J, Kupeli N, Lord K, Moore K, Scott S, Vickerstaff V, Omar RZ, King M, Leavey G, Nazareth I, Sampson EL.Development of a model for integrated care at the end of life in advanced dementia: A whole systems UK-wide approach. Palliat Med. 2015 Sep 9.

 

Learner, S. (2014) Profile: ‘Caring for my father was a privilege I wished had never ended,’ says dementia campaigner Beth Britton (February 2014) http://www.carehome.co.uk/news/article.cfm/id/1563115/profile-dementia-campaigner-beth-britton

 

Lundgren D, Ernsth-Bravell M, Kåreholt I1. Leadership and the psychosocial work environment in old age care.Int J Older People Nurs. 2015 Jun 15.

 

McCormack B, Roberts T, Meyer J, Morgan D, Boscart V. Appreciating the ‘person’ in long-term care. Int J Older People Nurs. 2012 Dec;7(4):284-94.

 

McKeown J, Ryan T, Ingleton C, Clarke A.’You have to be mindful of whose story it is’: the challenges of undertaking life story work with people with dementia and their family carers. Dementia (London). 2015 Mar;14(2):238-56.

 

Miranda-Castillo C, Woods B, Orrell M. People with dementia living alone: what are their needs and what kind of support are they receiving? Int Psychogeriatr. 2010 Jun;22(4):607-17.

 

NHS England (2014). Five year forward view: Time to deliver. London: NHS. http://www.england.nhs.uk/wp-content/uploads/2015/06/5yfv-time-to-deliver-25-06.pdf

 

NICE commissioning guides [CMG48] Support for commissioning dementia care Published date: April 2013, https://www.nice.org.uk/guidance/cmg48

 

NICE quality standard [QS50] Mental wellbeing of older people in care homes Published date: December 2013 https://www.nice.org.uk/guidance/qs50

 

Oliver D, Healey F, Haines TP. Preventing falls and fall-related injuries in hospitals. Clin Geriatr Med. 2010 Nov;26(4):645-92.

 

Sampson EL, van der Steen JT, Pautex S, Svartzman P, Sacchi V, Van den Block L, Van Den Noortgate N. European palliative care guidelines: how well do they meet the needs of people with impaired cognition? BMJ Support Palliat Care. 2015 Sep;5(3):301-5.

 

UK Home Care Association. How to choose care.

http://www.ukhca.co.uk/choosingcareadvice.aspx

 

UK Homecare Association (2013). UKHCA Dementia Strategy and Plan, February 2013. Wallington: UK Homecare Association.

 

Zenthöfer A, Cabrera T, Rammelsberg P, Hassel AJ. Improving oral health of institutionalized older people with diagnosed dementia. Aging Ment Health. 2015 Feb 13:1-6.

 

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

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

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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.

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The energy of 'Dementia Friends' needs to be sustained as we begin to build the future

I had a terrific time between 2 and 5 September 2015 in Ljubljana in Slovenia for the 25th Alzheimer Europe conference: the theme of the conference (“Conference”) was “Putting strategies and research into practice”.

Helga managed to catch me on September 1 to invite me to come as an observer to the AGM. I enjoyed meeting Jens for the first time. This was the first time I’d seen Jean Georges chair a meeting, and there wasn’t a peep of dissent!

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Dementia, fundamentally for me and many others, is not about the European market, but about the European people. And here it’s useful for me to see where our endeavours, nation states of the United Kingdom, fit into the rest of the world (Alzheimer Europe last week and Alzheimer’s Disease International in Australia in April 2014). A pervasive thread in the development of global policy, done more in an incremental than revolutionary way on the whole, has been the ‘featuring’ of people living with dementia and carers. It’s become clear to me that people with dementia and carers have developed autonomy as independent groups on the whole, in that their views cannot necessarily be considered to be the same. The language has shifted subtlety from ‘engagement’ to ‘leadership’.

In talking with many people around the world, it’s abundantly clear that there is no comparison with where we are now compared to a few years ago. This does not mean we still haven’t got a long way to go. An imminent problem in the English policy is the future of social care funding. In the previous few years, there has been a relentless decrease in social care funding, which has not been ringfenced. The health of the National Health Service itself is dependent on the overall wellbeing of the social care system. The policy of dementia friendly communities took us from a very low baseline, that is people with dementia not feeling part of their community.

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The fact that there has been such a huge sign up to ‘dementia friendly communities’ specification programme is a testament to the interest in the notion of dementia friendliness, but, as the Alzheimer’s Society will be the first to admit, this is not meant to be a tick box exercise but the start of a commitment to making a community ‘dementia friendly’. Such communities are meant to promote independent living, not isolation.

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Some of the implementation of this inevitably is treating people with dignity and respect which in themselves are cost neutral, but the onus is on local authorities and employers to meet obligations under the Equality Act (2010) as the Regulations of this Act make clear dementia is a disability. The announcement by Marc Wortmann, the CEO of Alzheimer’s Disease International (ADI), will aim for ADI to be a signatory to the United Nations Convention on Rights of People with Dementia is highly significant, not least because of the clarity of leadership of the ADI in Marc and Glenn Rees, but symptomatic of a healthy relationship between ADI and international bodies such as WHO and the UN. Alzheimer Europe have had a longstanding willingness to sign up to the UN Convention. These developments, whilst gradual, all act together to make equality a reality, giving people with dementia true ’empowerment’ as nation states become accountable for their behaviour.

I am incredibly curious as to what other nation states think of the UK’s ‘Dementia Friends’ programme. ‘Dementia Friends’ is a mechanism, having started off in the UK in England, by which any member of the general public can sign up for a short 45 minute information session containing activities to learn about some basics of dementia. You don’t need to have heard about dementia beforehand. It’s a programme which is run by volunteers who themselves get trained up from the ‘Dementia Friends Champions’ programme. Fundamentally, our international colleagues are very impressed, and some blatantly envious.

But the endpoint, as such, is not whether there are one million or 4 million dementia friends, but it is encouraging that more than one million ‘dementia friends’ exist in the UK. All dementia friends have been encouraged to turn their understanding into a simple pledge, and it doesn’t matter how large or small this pledge might be. It could, say, write to a local newspaper to complain about the language referring to a person living with dementia if deemed derogatory. The Dementia Friends campaign, which was clearly signposted in the 2009 England National Dementia Strategy “Living well with dementia”, has helped to turn around the giant supertanker that is prejudice and discrimination towards dementia.

I hate military analogies, but all this means that the “war against dementia” is over. It is not in fact a “war against dementia”, but a war against poor dementia care standards, or a war against bigoted prejudice against people living with dementia. There is so much that can be done through a national programme, but the fact that there has been one at all, which has run smoothly, is a huge achievement. To take further the military analogy one is reminded of ‘Mission accomplished’. The “Mission accomplished” speech by George Bush from 2003 is extremely well known. It arises from a large barrier shown on the USS Abraham Lincoln aircraft carrier stating ‘Mission accomplished’, at a time when the vast majority of casualties were yet to occur. We don’t have a working definition of ‘post diagnostic care’, but Geoff Huggins at the Conference presented an overview of the various EU workstreams involved.

One such work stream, for example, is in residential care.

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I’ve now heard Jeremy Hughes, CEO of the Alzheimer’s Society, speak about Dementia Friends several times now. And, a bit like giving the Dementia Friends sessions myself as a Champion, I always glean a tiny incremental addition every time.

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I recently reviewed diversity in dementia around the world in my thesis ‘Living better with dementia‘, with forewords by Kate Swaffer, Chris Roberts and Beth Britton. It’s quite easy to under-estimate how bad it can be for people with dementia living abroad, but I feel that we can learn from other jurisdictions and their awareness campaigns.

Here was the context in Morocco presented last week – an example of a very successful awareness campaign instead.

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On the other hand, I have reviewed abstracts where there’s been, say, a release of balloons signifying an ‘end to Alzheimer’s’, but one does wonder about the efficacy of such publicity stunts in making a real difference. That difference is whether people with dementia are accepted in society as equals and as valued citizens. I’ve been hugely impressed with developments from the Alzheimer’s Society Ireland, notably their ‘Listen, learn, link ‘ campaign (“#forgetthestigma”).

 

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And the ‘out of the shadows‘ campaigning theme in Ireland has been effective. This reflects the notion of some people living with dementia becoming ‘warehoused’ and given inappropriate antipsychotic medications, for example. At worst, we occasionally hear about physical restraint which clearly implicates human rights. At another level, it’s about people in society simply being able to say ‘I live with dementia’, and not then be the recipient of funny looks, or pity.  Helga Rohra, Chair of the European Working Group of People with Dementia. is another such person who has emphatically come ‘out of the shadows’.

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There has been a shift in tone and content in reporting on dementia in mainstream media too, I feel. The progress has been sluggish perhaps, but it’s evident. I have found myself finding stigmatising language in the headline of a very positive story about dementia many times.

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I have written many times on the potential weaknesses of the term ‘Dementia Friends’ in inadvertently and unintentionally promoting otherness and victimhood, but one can only assume that ‘Dementia Friends’ is consistent with the drive behind building ‘dementia friendly communities’. The narrative of ‘dementia friendly communities’ has definitely evolved further to ‘dementia inclusive communities’ or ‘dementia accessible communities’, but the term ‘dementia inclusives’ would certainly seem odd to many. I have likewise had qualms about ‘#dementiachallengers’, in that it’s unclear to me what the challenge is – although one challenge certainly is the lack of prioritisation of social care funding and training in dementia. Nonetheless, logically, one can only assume #dementiachallengers have a common bond in working on the Prime Minister’s Dementia Challenge.

 

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I have had the hundred or so ‘Dementia Friends’ I have ‘created’ produce very diverse pledges. I have been struck though at the genuineness and sincerity of these pledges though. These have included a salaried GP thinking about how to talk about dementia with patients more effectively, or a nutritionist in training to thinking about how to promote eating well with dementia on a hospital ward.

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I think changing the way people talk is going to take time – and the potential danger is of course preaching to the converted. I think tackling this might involve something as fundamental as making sure responsible reporting of any mental health issues, including dementia, are on journalism courses. Journalists pride themselves inevitably on their high degree of professionalism, so they shouldn’t be coming up with such facile headlines on such a regular basis.

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The Alzheimer’s Society are part of a wider international narrative about the creation of dementia friendly communities. As an aside, there is quite an interesting conversation to be had about whether residential care (including care homes) are part of the ‘community’ – and many strongly believe that they are indeed ‘community hubs’. The danger however for ‘Dementia Friends’ is that becoming a ‘Dementia Friend’ becomes a quick fix for private care providers to say staff are ‘trained’ in dementia. The Alzheimer’s Society are very clear that Dementia Friends is not ‘training’ for such a responsibility or rôle, and to imply that having signed up as a Dementia Friends means that you are of a sufficient standard in dementia to care in a care home is wrong. The current manual given to all Dementia Friends Champions states categorically that the Dementia Friends sessions are not ‘training’. I personally though would like to see the development of accessible training for people in caring roles at home or in residential homes, but the questions remain cost, equity, and quality. Possibly a ‘Dementia Friends Plus’ for professionals interested in an extended period of such service improvement might be part of the solution at least.

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The Alzheimer’s Society of course do not work in isolation. The voluntary sector as a whole is vital in ensuring support for people with dementia and carers, but should not be expected to be doing so in the context of relatively underfunded services.

It’s hard to ‘measure’ the ‘success’ of Dementia Friends, and indeed I have brought up the issues of relying on the ‘numbers game’ in proving an initiative’s worth.

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We do live in times where everything does have to be costed carefully. I think we do need to be thinking about having the system properly resourced at all levels, including acute hospitals, primary care, hospices, dementia advisors, dementia support workers and clinical nursing specialists, but all interventions have to be financially do-able as well as promoting health outcomes. I even said so in my own talk in Ljubljana (and thanks very much if you managed to make it there!)

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