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


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

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

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

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

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


Chapter 1 : Overview

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

Chapter 2 – The caring environment and culture

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

Chapter 3 : Physical health and aspects of pharmacy

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

Chapter 4 : Wellbeing and mental health

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

Chapter 5 : Cognitive stimulation and life story

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

Chapter 6 : Oral health and swallowing difficulties

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

Chapter 7 : Activities

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

Chapter 8 : Spirituality and sexuality

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

Chapter 9 : Research, regulation and staff

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

Chapter 10 : Care homes in integrated care

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

Chapter 11 : Independence

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

Chapter 12 : Palliative care and end of life care

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

Chapter 13 : Living at home

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

Operationalising ‘the cognitive footprint’

It is widely accepted that well-being is a multidimensional concept encompassing multiple domains of human functioning (McGillivray, 2007).

Objective and subjective well-being is fundamental to many international economic strategy recommendations and the measurement and monitoring of both is increasingly required for policy development and evaluation.

There has recently been a surge in interest in measuring wellbeing at a national level, a policy plank which has grown to prominence in recent years. There is absolutely no reason why dementia should escape this approach, particularly since the promotion of wellbeing is the statutory aim of the Care Act (2014).

“Dementia 2012″ was the first in a series of annual reports for the Alzheimer’s Society. YouGov completed a poll of the UK adults for Alzheimer’s Society in December 2011. 2,070 individuals were asked about both their own quality of life and their perceptions of how well people are able to live with dementia.

That poll found that 17% of people with dementia responding to the survey said that they are not living well with dementia at all, 55% said they are living quite well with dementia and only 22% said that they are living very well with dementia.

This survey had been distributed to people with dementia via Alzheimer’s Society dementia support workers and dementia advisers in England, Wales and Northern Ireland.

Just shy of the weekend currently in progress, I read a contribution in dementia policy, co-authored by one of my previous bosses, Prof Martin Rossor. The other co-author was Prof Martin Knapp. The short piece is called “Can we model a cognitive footprint of interventions and policies to help to meet the global challenge of dementia?”, and is on the Lancet platform here.

Knapp and Rossor raised the issue of a “cognitive footprint” thus.

“Can we develop a so-called cognitive footprint that, as with a carbon footprint, can be either negative (impair cognition) or positive (enhance cognition)? A cognitive footprint could then be used to assess and model potential cognitive effects of medical and public health interventions through to social and wider public policies. It could be identified across many public policy areas, including health, social care, education, criminal justice, transport, sport, employment, and doubtless others. The importance of this footprint stems from links between cognitive skills and educational attainment, employment status, earnings, performance in instrumental activities of daily living, and (at national level) to income distribution and economic growth.”

There are methodological issues to do with a ‘mass survey’ of people with dementia.

First of all, there’s the ethical issue of consent. As such it’s not a clinical trial, and even then special considerations are being used to involve as many people as possible in research ethically as possible. One would have to confirm that this survey did not require local or national clinical ethical approval; and if not, such approval would have to be sought.

Secondly, one would have to select arbitrarily a size of the sample. A good starting point would be a comparable number to the Dementia 2012-5 samples. Also, there has never been any comment to my knowledge regarding the composition of these samples. For example, would the sample comprise of people with dementias reflecting the natural national prevalences of the different underlying conditions, such as Alzheimer’s disease? Might it be helpful to do a separate survey for people living with dementia under the age of 65 (so called ‘young onset dementia’)?

Thirdly, how would one do the survey?

It makes sense, for example, to do the survey electronically; but this raises questions how confident people living with dementia feel in participating in electronic surveys? Such surveys would be expected not to offend the Equality Act (2010). I know from my own personal experience that I blog sometimes with the option of the audience selecting a large size of print (this is for people living with a posterior cortical atrophy type of dementia, where reading difficulties can be noteworthy.)

And how to measure the wellbeing metrics?

I feel a useful starting point would be to use the methodology of the Office for National Statistics in measuring wellbeing currently. One example of their recent outputs is here.

There are other valid approaches. For example, this paper charts the development of the UK validation of a general measure of subjective well-being: the modified BBC subjective well-being scale (BBC-SWB) (“BBC paper”).

The ONS describe a whole plethora of measures and helpfully provide supportive literature. Particularly relevant here are the ONS’ attempts at measuring ‘social capital’, which could prove to be helpful to the measurement of ‘cognitive capital’ of Rossor and Knapp.  Also, the ONS provide a basis for ‘international comparisons’. Clearly, for us to make comparisons with other jurisdictions, one would need to run the same methodology abroad, say, with supportive charities (such as Alzheimer’s Australia or the Alzheimer’s Association), maybe under the auspices of the Alzheimer’s Disease International.

Table 1 of the BBC paper presents a series of questions for investigation, but they could be easily adapted to ask about the domains of the Rossor and Knapp paper.

“Are you happy with access to criminal justice?”

“Are you happy with opportunities to do sports?”

The document “Measuring  Subjective Well-being” from Lucy Tinkler and Stephen Hicks at the Office for National Statistics (2011) helpfully summarises the theoretical underpinnings of this type of work.

Three broad approaches have been identified when measuring subjective well-being; ‘evaluative’, ‘experience’, and ‘eudemonic’.  That’s why it would be important to include some ‘core questions’, viz:

  • overall, how satisfied are you with your life nowadays? (experience)
  • overall, how happy did you feel yesterday? (positive affect)
  • overall, how anxious did you feel yesterday? (negative affect)
  • overall, to what extent do you feel the things you do in your life are worthwhile? (eudaemonic)

The ONS approach to measuring subjective well-being “is a balanced approach, taking into account the different ways that subjective well-being can be measured.”

Previous wellbeing research has thrown up some interesting anomalies.

For example, there’s the notion of the ‘happy peasants’, that very poor people can be extremely contented; or put another way, the relationship between income or GDP and quality of life or wellbeing is poor. Likewise, it has been shown that wellbeing does not necessarily correlate with ‘severity’ of dementia, howeverso defined or measured.

I fully expect future research to throw up some anomalies. We might find that countries with the highest incomes do not necessarily show the highest subjective ratings of wellbeing.

This brings up a final methodological consideration. How good are people living with dementia at rating their own wellbeing? This is a relatively under explored area of research, although there is a growing area of research in dementia into degree of insight into cognitive symptoms and lack of insight (anosognosia).

But Rossor and Knapp should be given credit for opening up an extremely area of research, which will be important both nationally and internationally.


Recommended reading

McGillivray M: Human well-being: issues, concepts and measures. In Human well-being: concept and measurement. Edited by McGillivray M. Basingstoke: Palgrave Macmillan; 2007:1–23.

Life all good selfies, co-production for research into dementia might not be as it appears

This was the famous selfie from the Oscars which went viral all over the internet, partly thanks to social networking sites such as Twitter.

selfie 1

But this snap photo explains why Liza Minelli was unable to make it.

selfie 2

That things might not be quite as they first appear is nothing new.

Kate Swaffer (@KateSwaffer), living with dementia in Adelaide, has remarked in the past how she feels like a duck all serene on the surface, but paddling really hard underneath.

The co-production of public services has been defined in a variety of ways – e.g. “Co-production means delivering public services in an equal and reciprocal relationship between professionals, people using services, their families and their neighbours” (New Economics Foundation).

Or in the alternative, “the public sector and citizens making better use of each other’s assets and resources to achieve better outcomes and improved efficiency” (Governance International).

Research into dementia, more so following the G8 Dementia Summit, has been dominated by analysis of Big Data genetics with a view to ascertaining risk pools and personalised medicine, possibly means for asymptomatic screening or early detection, and new pharmacological interventions.

The amount of resource allocation put into this some might say has not been matched by the successful outcomes from this research, though the corporate capture in the large charity, politics and media are well known.

But I believe strongly research into quality of care, or indeed living well with dementia in support settings, should not be regarded as ‘inferior’.

Careful research attention should be put into assistive technologies, assistive living, the innovation culture, design of wards and homes, and, of course, how you measure living well in the first place.

Co-production, however, offers a chance for people with early dementia to be able to shape the services for care, as well as to shape research.

I have latterly become involved in a crowdfunding campaign where I explain the critical importance of decisions for a person with dementia in the science of dementia as well as the implications for our law on mental capacity.

But I also want this to initiate a dialogue between people with early dementia and other interested parties with the law and neuroscience, and other possible stakeholders such as the NHS.

I’m mindful that my book ‘Living well with dementia’ does look through the “personhood lens” – a lens which has done much to challenge the stigma and discrimination associated with dementia – and some people don’t like that.

Darren Gormley (@mrdarrengormley) immediately pointed me to an area of work, in particular a paper called “From personhood to citizenship: Broadening the lens for dementia practice and research” by Ruth Bartlett and Deborah O’Connor in Journal of Aging Studies 21 (2007) 107–118.

“One of the main boundaries of personhood is its lack of political dimension. In cognate literatures, including social gerontology, critical psychiatry and disability studies, a citizenship lens is used to promote the status of discriminated groups of people to that of an equal citizen, with the same entitlements as everyone else.”

“These disciplines use citizenship to understand and expose discrimination against marginalized groups such as people with physical disabilities and to reframe and politicize understanding of the experiences of people with mental health conditions; the scope of this work is wide ranging and goes beyond care issues to include discrimination in the workplace and communities generally.”

The need to promote citizenship, as well as personhood, is beginning to be recognised within the dementia care literature, and I am hoping that this with an emphasis on living well with dementia will percolate into the research arena too.

A result of this shift is that, gradually, research has begun to emerge aimed at capturing the perspectives of persons with dementia. This body of research now clearly documents that persons with dementia are often quite aware of their situation, and can contribute important and unique insights about their experiences and needs.

I have often whinged about the word ‘sufferer’ so I was particularly interested to see the authors make the following remark.

“In addition, people with dementia were generally regarded as a ‘sufferer’ lacking insight into, and ability to articulate, their situation. This discourse silenced people with dementia. However, since attention was drawn to personhood and the exclusion of the perspectives of persons with dementia in understanding and influencing the dementia experience the focus has shifted to incorporating the voices and understandings of persons with dementia into both research and practice.”

However, my own particular interest is research for dementia, so this intrigued me massively since, if you pardon my phraseology, some of my best friends live successfully with dementia.

“The importance of making the shift to citizenship is further evidenced when one considers the potential direction of dementia care research. Currently, Alzheimer’s Society, UK has people with dementia on its research review panel, and there is a small (growing) body of literature to help academic researchers involve people with dementia more creatively in the research process.”

“People with dementia are clearly seen and treated as important players in the research process. However, little of the research looking at user perspective has gone to the next step of either pulling together or examining what happens in research projects in a way that is political.”

“For example, in most user perspective studies, individual needs are spoken of and contextualised using themes or general categories related to care provision; data are not generally seen in the wider political context of the need for social change.”

“Additionally, people with dementia are rarely involved in the early formulation and planning of projects, which raises questions about the relevance of current research to people with dementia. The point is not to criticize user perspective studies but to highlight how a shift to citizenship would ensure people with dementia were seen and treated as people with power, specifically people with the power to instigate and shape the research agenda.”

And that for me is the issue of a two tier nature of who decides research agendas in practice.

Kate Swaffer and I often discuss behind the scenes our concerns about ‘tokenism’, both from quite different personal viewpoints but with similar themes.

How things appear might not actually how they are in reality.

Ruth Bartlett, to her credit, has also developed a ‘toolkit’ draws on my experiences of using diaries for research into the lives of people with dementia who campaign for “social change”.

Like the famous selfie at the Oscars.

I really had not intended to start a ‘social movement’, but this is in fact exactly what I wish to do now.

And I’m clearly bound to be very happy that currently there’s a massive ESRC grant looking into this.

“Finding that people with dementia are willing and able to campaign, and presenting this at national and international conferences, has captivated academics and improved their understanding of people with this condition.”

This also has profound implications for service development for dementia consistent with the current trajectory.

A rhetoric of ‘user involvement’ became a central part of NHS policy during the establishment of the Community Health Councils in 1973. This had continued through the proliferation of “New Public Management” principles and the growing importance of measures of satisfaction in the 1980s. The NHS and Community Care Act [1990] established a formal requirement for service user involvement in service planning.

From 1997, patient and public involvement were a central tenet of New Labour’s NHS modernisation agenda, and the NHS Plan was committed to creating a patient-centred NHS with user needs at the centre of service design and delivery.

I dare say all of this will be known to Simon Stevens, incoming head of NHS England and one of the key-architects of the NHS Plan.

Arguably, the roots of the phenomenon of ‘experts by experience’, potentially an abreaction to the medicalisation of mental illness, can be found in a history of mental health activism as far back as 1620, when inmates at “The Bedlam Asylum” petitioned for their rights.

After some initial disgruntlement, I’ve now decided I would never dream myself of being an ‘expert’ in anything to do with dementia, but rather a well-informed enthusiast.

People living with dementia and all carers including unpaid caregivers are the real experts.

The somewhat political term “survivors” refers to those who have survived not only their mental health difficulties, but also experiences of psychiatric services, and/or the accompanying general social exclusion.

Or you can the viewpoint, particularly if you’ve been influenced by some, that ‘users’ of mental health services are ‘consumers’ and help to design them.

This is of course all very timely. The Kings Fund have recently published its interim report from the “Independent Commission on the Future of Health and Social Care in England” by Kate Barker and colleagues.

A lack of co-production possibly caused the problems in entitlement and funding which meant Sally (@nursemaiden) was at the receiving end of a bad experience of services looking after her father who was living with dementia.

In fact Sally has written about this in the Foreword to my book.

What unites both the consumerist subject position of service user and the position of “survivors”, is that they are both legitimised by virtue of their experiences of mental distress and/or of service (ab)use, and seek progressive developments in the treatment, perception and governance of the experiences of mental health.

I’m one such survivor, as I’m in recovery from alcoholism for seven continuous years now. I also live with physical disability.

It’s not enough merely to ‘involve’ carers though; carers patently need to be involved in research as without them the entire service would collapse. And carers themselves often need support, over all sorts of health issues, legal or financial matters.

It’s also essential to ‘involve’ people actually living with dementia who may or may not have some similar concerns, and some different.

But ‘involving’ is not enough.

I feel passionately that people with early dementia should be given the power and control to shape the research agenda in their interests, such as the brilliant work by Ruth Bartlett. This may or may not include living well with dementia: that’s not my choice, but I’m pretty sure I  know what the answer might be. Otherwise, ‘co-production’ is merely an illusion of involvement, and as regards living well with dementia is not at all what it seems. Suffice to say, I am not afraid about shouting loud about this on behalf of people living well with dementia.

I intend to promote the need of high quality wellbeing research at the SDCRN 4th Annual Conference on dementia in Glasgow today

This is the programme for today which I’m looking to enormously today.

I will be promoting heavily the cause of living well with dementia, to swing the pendulum away from pumping all the money into clinical trials into drug trials for medications which thus far have had nasty side effects.

In keeping with this, I have been given kind permission to give out my G8 Dementia Summit questionnaire to look at delegates’ perception of what this conference was actually about.

We need also not to lose sight of the current persons with dementia, to ensure that they have good outcomes in the wellbeing.

This can be achieved through proper design of care environments, access to innovations including assistive technology, meaningful communities and networks for people with dementia to be part of and to lead in, and proper access to advocacy support services and information which empower choice and control.

There’s a lot to do here – and we need to have high quality research into all of this arm of research too.

Coming back home to Scotland is like travelling back in time for me.

I was born in Glasgow on June 18th 1974, and my lasting memory of leaving Glasgow for London 37 years ago was how relatively unfriendly Londoners were in comparison.

Of course the train journey through the beautiful England-Scottish border countryside brought it back to me. There’s a lot to be said for getting out of London. It’s an honour to be here back in Scotland.

My book ‘Living well with dementia’ is here.


Dedication • Acknowledgements • Foreword by Professor John Hodges • Foreword by Sally Ann Marciano • Foreword by Professor Facundo Manes • Introduction • What is ‘living well with dementia’? • Measuring living well with dementia • Socio-economic arguments for promoting living well with dementia • A public health perspective on living well in dementia, and the debate over screening • The relevance of the person for living well with dementia • Leisure activities and living well with dementia • Maintaining wellbeing in end-of-life care for living well with dementia • Living well with specific types of dementia: a cognitive neurology perspective • General activities which encourage wellbeing • Decision-making, capacity and advocacy in living well with dementia • Communication and living well with dementia • Home and ward design to promote living well with dementia • Assistive technology and living well with dementia • Ambient-assisted living well with dementia • The importance of built environments for living well with dementia •  Dementia-friendly communities and living well with dementia • Conclusion


Amazing … A truly unique and multi-faceted contribution. The whole book is infused with passion and the desire to make a difference to those living with dementia…A fantastic resource and user guide covering topics such as communication and living well with dementia, home and ward design, assisted technology, and built environments. Shibley should be congratulated for this unique synthesis of ideas and practice.’
Professor John R Hodges, in his Foreword

‘Outstanding…I am so excited about Shibley’s book. It is written in a language that is easy to read, and the book will appeal to a wide readership. He has tackled many of the big topics ‘head on’, and put the person living with dementia and their families at the centre of his writing. You can tell this book is written by someone who ‘understands’ dementia; someone who has seen its joy, but also felt the pain…Everyone should be allowed to live well with dementia for however long that may be, and, with this book, we can go some way to making this a reality for all.’ –Sally-Ann Marciano, in her Foreword

Book cover

My name is Shibley, and I’m addicted to buying my own book ‘Living well with dementia’

I’ve sat in more recovery sessions than you’ve had hot dinners….

.. possibly.

So I get a surge of dopamine whenever I receive yet more copies of my book from Amazon.

Worth every penny.


I am Shibley. and I’m addicted to buying my own book.

in a circle

But I also have a weird habit of getting people I know to sign my copy of my book.

I get withdrawal symptoms from not having enough copies.

I also get tolerance – I need to have an increasing number of copies to get the same “kick” from my book.

Thanks enormously to the following ‘well wishers’, though, who have signed my book.

A huge thanks to Gill  (@WhoseShoes) for her unflappable support of me and my book.

Here’s Gill’s blogpost.

And here we are!


I felt very happy to give a copy of my book to Prof Sube Banerjee, newly appointed Chair of Dementia at Brighton and Sussex Medical School. Sube has in fact been the lead for England for dementia – his work is quoted in my book, and I think he’s made an enormous contribution to the living well with dementia literature.


And what does the future hold for ‘living well with dementia’?

Other ‘signatories’ include:


Richard Humphries


I’ve known Lisa for yonks on Twitter. Lisa is one of the few people who’ve supported me through the bad times too.








But now you can ‘Look Inside’ to get a flavour of my book – as there is now a Kindle edition (thanks to Alice in my book publishers @RadcliffeHealth)

Here it is on Amazon.

Look inside

Here is a sample chapter from my book ‘What is living well?’

‘Living well’ is not some bogus mantra for the hell of it. It is an ideological standpoint which serves to promote the dignity of our fellow citizens who happen to also have a clinical diagnosis of dementia.

And here are the “beautiful people” who came to my book launch at the Arlington Centre, Camden, one afternoon in February. I can’t believe that this wasn’t even a month ago now!

Book launch

One of the happiest days, as well, was giving Joseph a copy of my book as a gift.

Joseph was in fact my carer when I could hardly walk or talk, when I was in physical recovery from meningitis on ITU (where I was unconscious in 2007).

And those were the days…

Royal Free

And THIS is the famous poppy.

This picture was taken by Twitter pal, @charbhardy, first amongst equals in the #dementiachallengers.

the famous poppy

After I said I was buying my own copies, @KateSwaffer asked:


But Kate has read a copy of my book from cover to cover:

And as @Norrms says – how can ‘living well with dementia’ fail?

Sure, it’s about dementia research stupid, but don’t forget about wellbeing.

The famous aphorism of Carville is: “It’s the economy stupid, but don’t forget about healthcare.”

This is the way I feel about certain dementia campaigners who unashamedly wish to sideline wellbeing, in the search for a ‘cure’ via well funded biology labs.

Australia will host the next meeting of the Group of Twenty (G20) in November. We ask our Prime Minister, Mr Tony Abbott, to place dementia prominently on the G20 agenda. A petition entitled, “Australian PM Tony Abbott: Make dementia research and prevention a priority agenda item at the G20″ has been created by Professor Perminder Sachdev (Co-Director), from the Centre for Healthy Ageing.

The campaign banner is here.


Firstly, let me say it would be impossible to write this article without acknowledging Kate Swaffer.

Kate is here on Twitter, @KateSwaffer.

Kate is Chair of the Dementia Advisory Committee at Alzheimer’s Australia.

I firmly believe that there is a clear priority for researching good quality dementia care, and wellbeing approaches, as well as funding research into basic biology and applied treatments; and possible preventions, acknowledging that vascular dementias are probably are our best bet for initially reducing the prevalence.

These are potentially exciting times.  See for example the recent work on GSK-3 inhibitors which has much promise, if they can tackle ‘known issues’ including potential side effects.

There’s a whole plethora of issues why dementia modifying-drugs have been found to be turkeys not to fly ultimately. These don’t just include a modest effect on benefits and outcomes, but also an inability of the drug to cross the barrier between the body and the rest of the body, and their prohibitive initial price of retail. Notwithstanding, dementia biological research is exceptionally vital to support, and the petition above must be supported for those reasons alone possibly.

But it really is about the quality of life ‘stupid’.

For example, the Dementia Alliance International is a non-profit group of people with dementia from the USA, Canada, Australia and other countries that seek to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

There is much to be gained by investing in understanding wellbeing and wellbeing improvements for people living with dementia, allowing greater independence where possible and appropriate. This involves a dialogue about the value that people with dementia bring to the community, along with us all, adaptations and innovations to improve vastly quality of life, design features in a person’s home, ward or external environment, greater choice about care services and better provision of information, promotion of leisure activities and techniques already proven to be of benefit (such as life story or reminiscence approaches).

For research to be moral, we should consider whether it’s moral that Pharma should have the lion’s share. The last decade is littered with failures, with the people should shout loudest, not necessarily anyone with formal academic qualifications in medicine, nursing, social care, or specifically dementia, not acknowledging that the cholinesterase inhibitors do not slow progression in the majority of individuals with Alzheimer’s disease. The modest effects of these drugs on many comes close to being an offensive scam, though the drugs are clearly of benefit in some.

“At the recent G8 summit, the leading economies of the world made a commitment to developing a cure for dementia by 2025. The UK said it would double its annual research funding for dementia to £132m by 2025. The USA has increased its funding for dementia recently by 12.5%. However, all this comes from a low base, with research funding for cancer currently being about 8 times, and for cardiovascular disease about 6 times that for dementia in high income countries (HICs). A huge imbalance will continue to exist.”

Otherwise, we get stuck in the same old tired language of the pharmaceutical industry.

Please do sign the petition, but please do not tolerate these messaging devices which are designed to induce panic and fear. People with dementia do not deserve that.

“[Abbott] will follow the lead of the British Prime Minister who recently hosted the G8 Dementia Summit, and called dementia “the disease that steals lives, wrecks families and beaks hearts” and recognised it as “an increasing threat to global health”.”

This language of “burden” not value has been pervasive in many charities’ attempts at raising money for dementia historically:

“Of course, dementia is a global problem, currently costing more than $600 billion annually, and growing exponentially. The greatest growth is in low and middle income countries (LMICs). Already, there are more dementia patients in LMICs, and by the middle of the century, more than 70% of dementia patients will be in these countries, which are ill-equipped to deal with the burden of dementia.”

Without unpaid carers in the UK, the NHS care for dementia would collapse. And yet they are totally invisible in this narrative.

Certainly, globally low rates of dementia are unacceptable, but also unacceptable is the medical profession not talking about wellbeing at all with their patients preferring to stick to the rubric of “treatment”

If, like me, you’d like to give carers a voice, please support the work of Tommy Whitelaw (@TommyNTour).

“In many countries, there is a lack of awareness of the problem, dementia is poorly diagnosed and facilities for treatment and care are rudimentary. ADI estimated that 3 out of every 4 of the 36 million people worldwide living with dementia have not been formally diagnosed and are not receiving treatment and care. The “treatment gap” is most significant in developing nations. In Australia, the average delay between the onset of noticeable symptoms and a firm diagnosis is 3.1 years. Putting dementia on the G20 agenda and getting a commitment from the leaders of countries like China, India and Brazil is likely to have a remarkable impact on dementia awareness, care and research around the world.”

And the bottom line is..

“More funds are needed for the diagnosis, treatment and care of dementia patients. An investment into dementia research is urgently needed from all countries, led by but not restricted to the rich nations. In many parts of the world, research into dementia is non-existent. This, combined with the relative neglect of dementia research in rich countries, has created a major gap between the disability and suffering attributable to dementia and the research investment into its diagnosis, treatment and appropriate care. Greater research funding will help develop new treatments, but more importantly, exploit the current knowledge to develop strategies to prevent dementia or delay its onset. The G8 has set ambitious targets. We ask Mr Abbott to take the lead and make it a truly global fight against the dementia time bomb.”


It is now more essential than ever to ask persons or ‘users’ of the NHS, and those of jurisdictions beyond such as in Australia, what they want from a strategic response to dementia. This could include, justifiably,  better support for carers who include unpaid family caregivers working under considerable stress.

More than ever we need to have research funds to be allocated correctly. It’s going to be vital to have persons with dementia on these research funding allocation boards. For example, shouldn’t we know about the cost/benefit analysis of GPS trackers for people with dementia at risk of wandering?

With all the much trumpeted talk of ‘doctors being in the driving seat’, it cannot be acceptable that persons with dementia, if they are there at all, are tokenistically placed on funding boards.

Persons with dementia and carers should be empowered to tell the people with the money what matters to them the most. This could of course be the noble search for a cure, and much more parity for dementia research as compared with other conditions.

Sure it’s about dementia research stupid, but don’t forget about wellbeing.

#G8summit: Hazel Blears MP (@HazelBlearsMP) praises patients and carers, and calls for research into living well with dementia

On Thursday 28 November 2013, MPs debated the G8 summit on dementia. The debate was chosen by the Backbench Business Committee following a representation from Tracey Crouch. The application for debate was also sponsored by Hazel Blears and Paul Burstow.

This discussion, by parliamentarians, was in fact a very fair and balanced consideration of the practical issues facing the contemporary scene of dementia.

A lot has hopefully moved on from the attitude that, “Dot has gone a bit dotty”.

Diagnosis of the dementias is only part of the story.

The subsequent ‘treatment’ and ‘cure’ for dementia have been actively debated, but this parliamentary debate acknowledged that we have come on ‘leaps and bounds’ for enabling individuals with dementia potentially to live positively with dementia.

There’s clearly a complex parapluie of factors at play here. Does a current lack of cure for dementia lead to more stigma, or does stigma contribute to a current lack of cure for dementia?

Beyond the Prime Minister’s Dementia Challenge, there will need to be a long-term dementia strategy to expire next year, it is argued.

The UK is leading the discussion of dementia for the G8, but embarrassingly does not have a strategy yet for 2025 compared to some of its international colleagues.

There has been an increase in investment in dementia research, but this has come from a very low base, representing less than 1% of the annual science budget. It is hoped that this budget will increase, including funding for prevention as well as quality-of-life and wellbeing.

A great thing about this debate was its acknowledgement that not all dementia is Alzheimer’s disease; this is crucial for us to consider how best to allocate monies for research into other types of dementia too, such as the frontotemporal dementias.

brain areas

Another brilliant aspect was an appreciation that there needs to be support for carers, for avoidance of ‘crises’ – including support for the ‘Dementia Action Alliance’ – in the run-up to the #G8 dementia and beyond.

You can watch this excellent debate here.

Hazel Blears (@HazelBlearsMP) is the Labour MP for Salford. Her submission to the #G8 debate, as provided in Hansard, is as follows. Hazel is well known to be a ‘champion’ for dementia.

Hazel Blears (Salford and Eccles) (Lab): It is a great pleasure to follow the hon. Member for Chatham and Aylesford (Tracey Crouch), my colleague on the all-party group. It is also a great pleasure to see you in the Chair, Madam Deputy Speaker. This is my first opportunity to contribute to a debate under your chairmanship, and I would like to congratulate you on your election.

While I am handing out congratulations, I would like to congratulate the Prime Minister, too, on the personal commitment he has shown on dementia. [Interruption.] Credit where it is due. Those who have the presidency of the G8 have an opportunity to name a subject around which they would like to mobilise the international community. In playing his card at the G8, the Prime Minister has chosen dementia. I commend him for taking that action. I believe that international collaboration will be the way to achieve the next big leap forward, particularly on the research agenda. I support what the Prime Minister said at Prime Minister’s questions yesterday—that this issue is not a matter only for world leaders, important though they are; it is a matter for every single person in the community, whether they be a world leader, a health Minister or an ordinary citizen. Everybody has a role to play.

I shall start with the people who have dementia, along with their families and their carers. When we promote policy, do collaboration or talk about international research, we must constantly remind ourselves that the people with the disease and their carers and families are usually the most expert people in the system. Therefore, the services that we provide, the quality of care and the innovations we develop have to be shaped and guided by those people. We must empower them to make their voices heard in this debate. When we bring together our creativity, our imagination and the huge brain power in the research community, we must always bring to this issue, too, our own humanity. We must remember that people with dementia are valuable and loved human beings. If we can keep that at the forefront of our minds, we will make progress and be doing absolutely the right thing.

During Question Time yesterday I mentioned a lady called Joy Watson. I met her a little while ago. She is only 55, but she has early-onset dementia. Her family was devastated. When she went into shops, she might be a little confused over her change or what she needed to order, and the shops—and sometimes the customers—would be irritated with her, tutting and asking her to hurry up. She took to wearing a badge, which she designed herself, saying “I have got Alzheimer’s; please be patient with me”. She should not need to do that. Nowadays there is a scheme—I think it is called the purple angel scheme, and Joy is promoting it—so that people can wear a purple angel on their T-shirts as a means of raising awareness in every single part of our community.

In Salford, we have worked on this agenda for a number of years. We have just formed our dementia action alliance, with 30 organisations now committed to action plans to make us, I hope, the first dementia-friendly community in Greater Manchester. As well as health, education and housing bodies, we have the Lowry arts centre and our shopping centres included in the scheme. I think we have the first private-hire taxi firm in the country to be involved in this, Mainline Sevens taxis. It has trained 400 drivers and has an account system so that people with dementia do not have to fiddle with their money when they get in a taxi. All those groups are now dementia aware. That shows the really practical things that can be done.On the research side, I am delighted to say that tomorrow, Salford university will launch the Salford Institute for Dementia, bringing together the faculty of health and social care with departments dealing with the built environment, computers, IT, arts and media—showing the multidisciplinary approach that will apply. That group will draw together and disseminate research on living well with dementia. I think this is a fabulous academic development.

Hazel Blears therefore congratulated the Prime Minister for choosing dementia as a topic he wished to talk about.

It is noteworthy that patients themselves and their carers are the most expert in these complex conditions, and their voices must be heard.

Few will disagree with this.

Resilience in the midst of austerity: a challenge for dementia wellbeing

In Prof. Felicia Huppert’s latest chapter entitled, “The state of well-being science: concepts, measures, interventions and policie”s, to appear in Interventions and Policies to Enhance Well-being (Huppert, F.A. and Cooper, C.L. (eds.) ), Prof. Huppert re-establishes the perspective that it is possible to demonstrate wellbeing even in the presence of a label of a clinical diagnosis. This aligns itself  nicely with the argument which I have been advancing, that it is the possible to enhance the wellbeing of an individual with dementia through careful consideration of his or environment. For example, one could attempt to make the home or ward better designed, attempt to involve the individual with leisure activities or general activities (such as reminiscence therapy), seek to encourage adoption of assistive technologies or assisted-living technologies, or try to encourage more social activities including participation in a wider community. However, Huppert and So (2013), to establish what components comprise well-being, have examined carefully the internationally agreed criteria for the common mental disorders (as defined in DSM-IV and ICD-10) and for each symptom, listed the opposite characteristic. This resulted in a list of ten features which represent positive mental health or ‘flourishing’. These are: competence, emotional stability, engagement, meaning, optimism, positive emotion, positive relationships, resilience, self esteem, vitality.

Just as symptoms of mental illness are combined in specific ways to provide an operational definition of each of the common mental disorders, they proposed that positive features could be combined in a specific way to provide an operational definition of flourishing. The diagnostic criteria for a mental disorder do not require that all the symptoms be present; likewise, the operational definitions of flourishing (Keyes, 2002) do not require that all the features of positive feeling and functioning be present. There is currently a relative paucity of literature on the efficacy of psychological techniques such as “mindfulness” in enhancing wellbeing in individuals with dementia, but it is possible that innovative ways of improving any aspects of the multi-dimensional construct could be developed through such a technique. Among the reported benefits of mindfulness training in other populations, which are related to subjective well-being, are: reductions in stress and anxiety, increased positive mood, improved sleep quality, better emotion regulations, greater bodily awareness and increased vitality, and greater empathy (Huppert, in press.)

Clearly, ignoring the economic climate of an individual with dementia is not going to be possible, although I have thus far successfully managed to avoid such a discussion. The data reported in Huppert and So (2013) are from 2006/07, two years before the severe economic recession from which many countries have since suffered. Huppert (2013) argues that it would be very interesting to know if the recession has changed the prevalence of flourishing or its component features within and between countries, and the extent to which country rankings of the prevalence of flourishing may have altered. Relatively recent data from the Gallup World Poll show almost no impact of the economics crisis on subjective well-being in the UK (Crabtree, 2010). However, one clearly has to acknowledge the ‘social determinants of health”, famously described by Marmot (2012) as: “Mental health and mental illness are profoundly affected by the social determinants of health; psychosocial processes are important pathways by which the social environment … impact [s] on … physical and mental health … ”  Indeed McKee and colleagues (McKee et al., 2012) make a constructive but profoundly depressing link between illbeing and austerity:

“For many months, the political and financial aspects of the crisis have filled the headlines. However, behind those headlines, there are many individual human stories that remain untold. They include people with chronic diseases unable to access lifesustaining medicines, persons with rare diseases who are losing income support and forced to care for themselves, and those whose hopes of a better life in the future have been dashed see no alternative but to commit suicide. So far, the discussion has been limited to finance ministers and their counterparts in the international financial institutions. Health ministers have failed to get a seat at the table. As a consequence, the impact on the health and wellbeing of ordinary people was barely considered until they made their feelings clear at the ballot box.”

More optimistically, Huppert and So (2011) argue that this parcellation of the positive wellbeing multidimensional construct may be useful for developing targeted interventions:

“If a population group is high on some features of well-being such as positive relationships, but low on others such as engagement or resilience, it is clear where interventions should be targeted.”

resilience ability


Psychosocial resilience is a dimension of wellbeing which perhaps will be worth considering in detail, of how an individual and immediates might be able to cope and adapt to future adversity. This indeed is reflected in a definition of psychosocial resilience as provided by Williams and Kemp (in press) as “a person’s capacity for adapting psychologically, emotionally and physically reasonably well and without lasting detriment to self, relationships or personal development in the face of adversity, threat or challenge.”  Reaching a logical conclusion, whilst there might be aspects of life which encourage illbeing, a reasonable strategy might be to strengthen components which can help to improve specific aspects of wellbeing. This would not have been possible had it not been for the work of Prof. Felicia Huppert and colleagues emphasising that wellbeing is a multidimensional construct, in the same way that it is widely acknowledged that it is unhelpful to think of dementia as a unitary diagnosis.

The Department of Health (2012) policy document, “No health without mental health: implementation framework” very nicely produces a backdrop for emphasising the importance of wellbeing in dementia. Their core principles are set out “a clear and compelling vision, centred around six objectives: more people will have good mental health, more people with mental health problems will recover, more people with mental health problems will have good physical health, more people will have a positive experience of care and support, fewer people will suffer avoidable harm, and fewer people will experience stigma and discrimination“.

Notwithstanding this, it appears that the analysis of ‘living well in dementia’ is now benefiting from an approach which has led to an appreciation that no dementia is clinically the same; nobody’s wellbeing is exactly the same, because of the way in which all the contributing parts have come together. This approach is elegant, holds incredible promise for the future.






Crabtree, S. (2010) Britons’ wellbeing stable through economic crisis Gallup, November 24, 2010. Available at: http://www.gallup.com/poll/144938/Britons-W%20ellbeing-Stable-Economic-Crisis.aspx

Department of Health (2012) No health without mental health: implementation framework, available at: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/156084/No-Health-Without-Mental-Health-Implementation-Framework-Report-accessible-version.pdf.pdf

Huppert, F. (in press) The state of well-being science: concepts, measures, interventions and policies, to appear in Huppert, F.A. and Cooper, C.L. (eds.) Interventions and Policies to Enhance Well-being, Oxford: Wiley-Blackwell.

Huppert, F.A. and So, T.T.C. (2013) Flourishing across Europe: application of a new conceptual framework for defining well-being, Social Indicators Research, 110(3), pp 837-861.

Keyes, C. L. M., (2002) The mental health continuum: From languishing to flourishing in life, Journal of Health and Social Behavior, 43, 207– 222.

Marmot M. (2012) Health inequalities and mental life, Advances in Psychiatric Treatment, 18, pp. 320-322.

McKee, M., Karanikolos, M., Belcher, P., and Stuckler, D. (2012) Austerity: a failed experiment on the people of Europe. Clin Med, 12(4), pp. 346-50, available at: http://www.rcplondon.ac.uk/sites/default/files/documents/clinmed-124-p346-350-mckee.pdf.

Williams, R, and Kemp, V. (in press.) Psychosocial resilience, psychosocial care and forensic mental healthcare. In: Bailey S, Tarbuck P. (eds.) Adolescence Forensic Psychiatry, Cambridge: Cambridge University Press.

What is “living well”?

Before contemplating approaches to ‘living well with dementia’, and how you could even measure it, we need to have an understanding of what “wellbeing” might be, and why it is currently considered important in public health policy circles and beyond.

Definition of wellbeing

The first thing to think about is: what does it actually mean to live well, in other words wellbeing?

Historically, Jahoda (1958) is usually regarded as the first person to have promoted the idea of positive mental health, which she defined in terms of six elements of positive functioning: ‘attitudes of an individual towards his own self’, ‘self actualisation’, ‘integration’, ‘autonomy’, ‘perception of reality’ and ‘environmental mastery’.

Huppert, Baylis and Keverne (2004) for their Royal Society meeting in 2004 further propose a definition of “wellbeing” as follows:

For the purposes of the Discussion Meeting, we defined wellbeing in broad terms as ‘a positive and sustainable state that allows individuals, groups or nations to thrive and flourish’. This means that at the level of an individual, wellbeing refers to psychological, physical and social states that are distinctively positive. Positive psychological states are exemplified by emotions such as happiness and contentment, attitudes such as generosity and empathy, and mental processes such as cognitive capabilities, interest and motivation. Positive physical states are characterized (sic) by vitality and physical capabilities, while positive social states include satisfying social bonds and loving relationships. Our definition of wellbeing also encompasses human resilience—the ability to survive and thrive in the face of the setbacks inherent in the process of living.

Wellbeing can be used to describe an objective state as well as a subjective experience. Objective wellbeing refers to wellbeing at the societal level; the objective facts of people’s lives, in contrast to subjective wellbeing which concerns how people actually experience their lives.

Wellbeing as a goal

Wellbeing has become an important goal in itself, both here and in the U.S. among many other jurisdictions.

Wellbeing is truly a concept that crosses across a number of different subject disciplines, and for many there are common attractions in using it as a national policy goal. Quoted by Juliet Michaelson (2012) of the New Economics Foundation Cente for Wellbeing, the head of the USA’s central bank, Federal Reserve chair Ben Bernanke, offered that:

“The ultimate purpose of economics, of course, is to understand and promote the enhancement of wellbeing. Economic measurement accordingly must encompass measures of wellbeing and its determinants.”


There are currently at least four good key reasons at least for a focus on wellbeing:

  1. Wellbeing indicators directly capture information about human lives. There is now substantial evidence showing that we may be able robustly to measure how people ‘feel’ about their lives, using indicators that converge with a whole range of other types of data. These have also been shown to predict future behaviour.
  2. Measuring wellbeing broadens the scope of an overly narrow politics. It is widely argued that politicians have become so used to their success or failure being judged according to the headline measure of economic growth that their scope of action (the gross domestic product or “GDP”) has become rather narrow. This may indeed have contributed to apathy and disenfranchisement with the contemporaneous “political process”.
  3. People support wellbeing as a goal for governments as well as themselves. There has long been evidence that people think wellbeing is an important goal for governments to pursue. For example, a BBC poll of 1996 found that 81% of people in the UK supported the idea that government’s prime objective should be the ‘greatest happiness’ rather than the ‘greatest wealth’.
  4. Measuring wellbeing is a fundamentally democratic approach. Directly measuring how people feel about their lives avoids the need for others making decisions about what is important to then: this is the much respected ‘no decision about me without me’ approach. In principle, then, this brings people’s voices into the heart of policy.

According to Norton, Matthew and Brayne (2013), population ageing over the first half of this century is likely to lead to dramatic increases in the prevalence of dementia. This will affect all regions of the world, but also (it is said) particularly developing regions. Dementia projections have been used extensively to support policy. It is therefore important these projections are as accurate as possible. By the middle of this century, around 1 in 5 of the estimated 9 billion world population are expected to be aged over 60-years, compared to around 1 in 10 in 2000 (United Nations, 2004).

Furthermore, according to Luengo-Fernandez, Leal, and Gray (2011), dementia was estimated to cost the EU €189 billion in 2007. 68% of total costs were due to informal care, 26% to social care, 5% to health care and 1% to “productivity losses”. Therefore, dementia has posed a significant economic burden to European health and social care systems, and society overall, and it is extremely likely that it will continue to do so. The EURODEM consortium found that among European studies, using similar methodologies and diagnostic criteria, there were only trivial differences in the age-specific prevalence of dementia (twelve studies) and DAT (six centres), concluding that ecological comparisons were unlikely to be informative about aetiology (Rocca et al., 1991).

Helpful sources

Jahoda, M. (1958) Current concepts of positive mental health, New York: Basic Books.

Huppert, F.A., Baylis, N., and Keverne, B. (2004) Introduction: why do we need a science of wellbeing?”, Phil Trans R Soc Lond B, 359, pp. 1331–1332.

Luengo-Fernandez, R., Leal, J., and Gray, A.M. (2011) Cost of dementia in the pre-enlargement countries of the European Union. J Alzheimers Dis, 27(1), pp. 187-96.

Michaelson, J. (and the New Economics Foundation) (2012) The importance of measuring wellbeing http://www.neweconomics.org/blog/entry/the-importance-of-measuring-well-being.

Norton, S, Matthews, FE, and Brayne, C. (2013) A commentary on studies presenting projections of the future prevalence of dementia, BMC Public Health, 13, pp. 1.

Rocca, W.A., Hofman, A., Brayne, C., Breteler, M.M.B., Clarke, M., Copeland J.R.M., Dartigues, J.F., Engedal, K., Hagnell, O., Heeren T.J., et al. Frequency and distribution of Alzheimer’s disease in Europe: a collaborative study of 1980–1990 prevalence findings. The EURODEM-Prevalence Research Group. Ann Neurol 1991;30:381–90.

United Nations (2004) World population to 2300, available at: http://www.un.org/esa/population/publications/longrange2/WorldPop2300final.pdf.