Review of my book ‘Living better with dementia’ in Mental Health Today


Many thanks to Fenella Lemonsky (@organiclemon) for this helpful review of my book in “Mental Health Today) [here is the link to the original article.]

I find reviews like this a useful steer on future work. Academics can be notorious in misjudging the ‘mood music’ of the main drivers behind the service: people who use the services, which in my case are people living with dementia, their friends and family and other carers. I am in a privileged position in having access to thousands of peer-reviewed papers, but also feel that I have learnt a lot about the dementias from people living after a diagnosis. My knowledge of dementia has vastly improved since I took myself away from the medical lens, and adopted a viewpoint of other professionals and practitioners and people living with disability.


The Forewords to this text are by Kate Swaffer (@KateSwaffer), Chris Roberts (@mason4233) and Beth Britton (@BethyB1886).


The book is on Amazon here.


The review:


Shibley Rahman, 2014, CRC Press, ISBN 978-1908911971, £29.99

There has been much written and spoken about dementia in the media recently as a result of the government’s Dementia Strategy, which aims to help those with dementia, their families, professionals and carers be more responsive to needs.

In this context, Living Better with Dementia, by Dr Shibley Rahman, a dementia expert who is qualified in medicine, neuroscience and law, is highly relevant.

Initially, Rahman talks about the stigma of dementia and how this has remained through the past century, despite dementia becoming better understood and having a more positive outlook in recent years. While dementia and the whole management perspective can appear a challenge as the older population survives longer, this book is encouraging and positive. Specific medication that delays the onset of dementia symptoms and other medication like antipsychotics are discussed at length, including their use in nursing and care homes and how specific practices that have no evidence base can be challenged.

Two chapters that for me stuck out as very important were on young onset dementia and on antipsychotics and innovation. Young onset dementia was first explained to me at the author’s book launch, where nurse lecturer Kate Swaffer from Australia, who has young onset dementia, gave a moving talk. The impact is huge for the individual, their family and peer network as well as professionals. It affects employment, career opportunities and has a huge stigma attached to it as it is still often misunderstood. This is all discussed in the book.

The use of antipsychotics and care homes is also discussed at length. This is an important chapter, especially for those who look after those going into residential care, and it can enable them be on alert to good practice and how to spot where medication is used inappropriately. Antipsychotics use in care homes is a complex issue. In many cases careful use can ease distress and agitation, but there seems to be concerning evidence that there is over-prescribing of antipsychotics where behavioural treatments are more appropriate. Using extensive research, Rahman explains why using antipsychotics needs careful thought.

Other chapters focus on deprivation of liberty, sporting memories, global view and leadership strategies.

This is a well-written, extensively researched, easy to read and important book for anyone interested or working with dementia.

Rating: Highly recommended.

Review by Fenella Lemonsky, mental health service user researcher

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


Book 2

Details here


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.

‘Living better’ can become a reality for people with dementia if they lead policy

In the penultimate chapter in my book, I provide a reasoned case why people living with dementia should be given a chance to articulate details of ‘policy’.

Virtually all of us who attended the event (“A conversation with Kate and Shibley” described in this previous blogpost of mine on this blog) found the afternoon ‘inspiring’ or the such like. Of course, this can be expected from fifty misguided hyperbolic attendees; but in fairness to us, we all had some sort of knowledge about dementia (in fact six of the delegates definitely could reasonably be called ‘experts’ living with dementia, so are experts in their dementia in their time.)

I brought up the idea that we appear to have a new national policy document every year almost. The wheel keeps on being reinvented. I cited the work of Wendy Hulko (@IncredibleHulko), that the views of people living with dementia had been systematically disenfranchised. I also cited the work of Ruth Bartlett (@RuthLBartlett) to do with reframing the narrative, e.g. away from a person being defined by his or her dementia.

The notion that “nothing can be done” is as untrue now, as it is untrue for the time in the future where we do happen to have stumbled across “cures” for the dementias in a piecemeal fashion in times to come. Here I’m arbitrarily defining a cure as a practical means of reliably stabilising a disease process of a dementia. For example, various psychological therapies have been demonstrated to improve cognitive functioning as well as other factors such as confidence and wellbeing. It’s likely that such psychological reablement and rehabilitation may provide some of resilience-boosting effect through the maintenance of appropriate activity-based neural connections.

The shift towards identifying the precise cognitive ‘make up’ of a person living with dementia allows identification of the precise abilities that a person with dementia at a given time has. This is a more productive use of the ‘follow up’. If in England services were commissioned fulfilling the s.1(1) Care Act (2014), to promote wellbeing, we could re-orient the Titanic that is the deficits-based medical model.

I gave a presentation on citizenship and living better with dementia as part of an event, co-hosted with Kate Swaffer, last Saturday. The slides for this presentation are here.

I am delighted that Chris Roberts accepted my invitation to give a brief speech in support of my book. Chris wrote one of the Forewords to the book (the other two are written by Kate Swaffer [@KateSwaffer] and Beth Britton [@BethyB1886]).

Both Kate and Beth need no introduction for their campaigning about dementia. I strongly commend to you blogs by Kate (here) and Beth (here) which will begin to introduce you to their substantial output.

Somebody in the audience, based on substantial experience of looking after her mum with dementia, warned against the volume of policies and strategies. This is not the first time I’ve heard this criticism, which invariably starts with, “I don’t know the details of these policies, but I do know what happened with mum”. Such feedback really is gold-dust.

That’s because in forming our views about how to progress with dementia care, there’s a feeling that “people don’t do ‘macro'”. In other words, people are more concerned about their living standards or zero hour contracts than they are about the national GDP. A person might be more interested in his or her personal wellbeing as a person living with dementia or carer, than the design of the post-diagnostic support systems (howeverso defined).

Through having completed two books on the subject of wellbeing in dementia, I’ve decided that there is a place for an overview of the general landscape. This is hugely fortified by personal experiences of people living with their dementias. Kate Swaffer is ‘unusual’ in that she can make sense of her living with dementia in the context of a huge and varied personal and professional background.

To work out what might be the lived experience of a Frenchman, you might ask a Parisian for an account (but even then this is a highly personal account for that particular Frenchman in his time and place). Or you can learn about the history, language, culture, infrastructure or geography of France as background, and still entirely miss what is important to that Frenchman. But that is not to say the cultural back story is entirely irrelevant.

But back to my primary point.

I think the way of turning around the iceberg is for people living with dementia leading on policy, not being ‘involved’ or ‘engaged’ with it at a superficial level. I’ve been struck by the remarkable success of Wendy Mitchell (@WendyPMitchell) in promoting research in dementia, amongst many other projects; or Ken Howard (@KenHowardUK) and Dr Jennifer Bute in a alerting people to what it’s like to live with dementia; or Hilary Doxford, as a member of the World Dementia Council, in alerting people to what matters to people living with dementia in global policy. I thank them all for their contributions on Saturday.

One of the many things which were discussed ultimately in how the media cannot be entirely to be blamed for negative perceptions of living with dementia. Part of a solution is for people living with dementia to present positive stories (as indeed Chris Roberts – @mason4233 – provided in a recent Alzheimer’s Society magazine, or Ken Clasper – @Ken_Kencdid too.)

One mechanism for people living with dementia to participate in membership of national bodies. That’s why I am hoping that some individuals will put themselves forward (e.g. living with dementia or in a carers’ rôle) for the committee revising the NICE CG42 dementia guideline; applications close at 5 pm on 5 August 2015

I hope, if you haven’t already done so, engage with these issues at a personal level in some way. I think it’s an enormous honour and privilege to be allowed a window into people’s lives. Dementia for me is not a medical ‘problem'; it is an opportunity for us to show, socially, solidarity and justice.

CJpgSyaWcAAsOR2.jpg-large   new profile pic 08.04.50CJoiEJCWIAA8Sl_CJonYYyWgAANu2Z  CJp6gANWwAEMluuCJpCy81WEAAcQUuDSC_0023

Kate did a separate – (much better in my personal view) – presentation. One slide from it says it all for me.


(“Living better with dementia” by me will be published in the UK on Jult 21st 2015, pre-order link here.)

Pharma can have an important rôle to play for dementia, but we should not be afraid to ask what


It’s a pretty big ask to call for ‘a cure for dementia by 2025′.

But I was thinking of it from the other perspective. What if there were ‘a cure for dementia’? Should one be ungrateful to all the world leaders, other politicians and various stakeholders for giving such prominence to this initiative?

Medicine is a funny old game. Patients ideally want certainty, not a diatribe of qualifications on what their diagnosis might be.

But, say, with the introduction of clearer genetic information, we’re now realising that many of the dementia presentations appear as a spectrum.

For example, the ‘semantic dementia spectrum’ conditions contain a mélange of different presentations of specific dementia conditions involving language, and a person may not easily fit into one diagnostic category.

Frontotemporal dementia contains a group of conditions which affect the frontal (front) and temporal (near the eye) parts of the brain. But it is not uncommon for doctors to revise their diagnosis that what they thought was predominantly ‘a frontal presentation’ turns out to be a ‘temporal presentation’, depending on the involvement of behavioural changes.

Dealing with uncertainty is an issue most of us feel uncomfortable with. Greater certainty is given for a dementia diagnosis following a person with time; the greatest certainty is offered post mortem, it might be argued.

In this ‘now generation’, it is not good enough for people to be languishing without a diagnosis. But I feel this diagnosis has to be in the right hands. It is a travesty to give someone a diagnosis when he or she does not live with a dementia; likewise it is a travesty to deny someone of a diagnosis.

We should be able to ask earnestly for more resources for primary care, if we wish them to be more confident about making the diagnosis; otherwise it is literally a case of leaving someone in limbo until the diagnosis is ‘sorted out’ by memory clinic sometime later.

A cure for dementia would heal some pain in providing certainty. But it is this ambition, I feel, which generates uncertainty we should confront with full transparency.

It is known that there are 47 million people living with dementia currently. What are we to offer these people even if we find a cure?

The most common type of dementia is the dementia of the Alzheimer type, with problems early on in learning, memory and attention. But will our ‘cure for dementia’ work for other dementias?

Will a ‘cure’ be a ‘cure’? Might be more accurate to say a condition is abated, in ‘total remission’, like cancer?

I find the drive for a cure for dementia interesting, as it is so poorly defined.

There are 1 000 000 000 000 000 nerve cells, all intimately connected with one another, so how for example are we going to target the pathological cells without affecting the healthy cells?

It is a brave man indeed who takes on the complexity of the human brain.

When you give a clinical diagnosis to someone, you are not only providing the diagnosis to him or her, but also his or her friends and family. Likewise, when we are building up expectations for a ‘cure for dementia’, what message are we trying to give the million or so caregivers, a majority family and unpaid, who are living with others’ dementia currently?

But likewise I think the contribution that Pharma could play in symptomatic relief for any of the dementias is not to be dismissed. Even then, one does not think of ‘curing asthma’ as we provide symptomatic relief through opening up airways through a bronchodilator, rather than some complicated intervention on the lungs.

Likewise, one does not easily think of ‘curing headache’ in that we are providing symptomatic relief by easing blood flow, perhaps, rather than some complicated neurosurgical operation on the brain?

It would be great for Pharma to be able to offer something, such as a pharmacological agent which could stop dementia in its tracks in its pre dementia stage. But we currently neither have the agent, nor the reliable identification of the pre dementia stage.

But we do have 47 million people wanting to live better with dementia – with concomitant caregivers – and it is our duty, with or without politicians, or with or without ‘Big Charity’ – to do something about that?

Contents to my new book ‘Living better with dementia: Good practice and innovation for the future’



Please note that this may or may not be the final book cover.

My new book ‘Living better with dementia: good practice and innovation for the future’ will be published by Jessica Kingsley Publishers on July 21st 2015.

The information about the book is here.

This is the official ‘blurb’.

What do national dementia strategies, constantly evolving policy and ongoing funding difficulties mean for people living well with dementia? Adopting a broad and inclusive approach, Shibley Rahman presents a thorough critical analysis of existing dementia policy, and tackles head-on current and controversial topics at the forefront of public and political debate, such as diagnosis in primary care, access to services for marginalised groups, stigma and discrimination, integrated care, personal health budgets, personalised medicine and the use of GPS tracking. Drawing on a wealth of diverse research, and including voices from all reaches of the globe, he identifies current policy challenges for living well with dementia, and highlights pockets of innovation and good practice to inform practical solutions for living better with dementia in the future. A unique and cohesive account of where dementia care practice and policy needs to head, and why, and how this can be achieved, this is crucial reading for dementia care professionals, service commissioners, public health officials and policy makers, as well as academics and students in these fields.

I can exclusively reveal the contents as below.


I am honoured that Kate Swaffer, Chris Roberts and Beth Britton have written the Forewords to my book: you can read them here.

This is my follow-up to my book ‘Living well with dementia: the importance of the person and the environment‘.

I should like to admit that I think ‘Living well’ is the wrong term. It potentially sets people up for a fall, if they cannot achieve someone else’s external standards for wellbeing. This is wrong. An aspiration for all people to live better, I feel, instead is a reasonable one.



Kate Swaffer urges that research should not only focus on cure but also should examine care

This was my ‘pledge’ for #globaldementia

It reflects Kate Swaffer talking about people with dementia and caregivers being ‘equal partners’. I couldn’t agree more.

shib pledge

This is my enhanced version of ‘no decision about us without us’. It’s my way of saying “do not inadvertently create division” by making people with dementia seem like targets of a ‘does he take sugar?’ attitude. I feel personally that the ‘dementia friendly communities’ policy globally, as outlined here by the Alzheimer’s Disease International, is working well, away from the tokenistic patronising crap many of us have warned against.

And good on for @KateSwaffer, Chair of the Dementia Alliance International, for not only getting a seat at the table, but also making herself comfy at it and sending rhetorical nuclear missiles at the establishment.

Time for caption

In case you missed it you can watch it here. Kate spoke just after Jeremy Hunt in the session on Monday morning in Geneva, 16 March 2015.

Kate believes that “we must all include this in her goal”, “to think about how can empower people to live better with dementia”. But Kate was aghast that there had been no mention of rehabilitation thus far in the proceedings.

live well

Kate welcomed the significance of the appointment of Hillary Doxford onto the World Dementia Council. Hillary herself lives with young onset dementia. I myself campaigned for a person with dementia to be included as a member of the Council, but it was the Dementia Alliance International who spearheaded this.

Kate explained the need for better care, services and research into living better with dementia.

These are the three aims which Kate promoted.

three key issues

Kate called the ‘prescribed disengagement‘ which accompanied the disclosure of her diagnosis ‘unethical’. She emphasised, “we don’t have a cure yet. we all know that. we are not that much closer to a cure.”

In the article for Dementia journal, Kate describes it powerfully thus:-

“Following a diagnosis of dementia, most health care professionals, including neurologists, geriatricians, physicians, general practitioners, and dementia service providers prescribe giving up a pre-diagnosis life and put all the planning in place for the demise of the person newly diagnosed with dementia such as wills, powers of guardianship and other end of life issues. I was told ‘to give up work, give up study, and to go home and live for the time I had left’. By 2009, I had termed this Prescribed Dis-engagementTM, and I ultimately chose to ignore it. One has to ask the question: Why is it that one day I was studying a tertiary degree, working full time, volunteering, raising a family and running a household with my husband, and the next day, told to give it all up, to give up life as I knew it, and start ‘living’ for the time I had left?

This Prescribed Dis-engagementTM sets up a chain reaction of defeat and fear, which negatively impacts a person’s ability to be positive, resilient and proactive.”

Dementia is the only disease or condition and the only terminal illness that I know of where patients are told to go home and give up their pre-diagnosis lives, rather than to ‘fight for their lives’.

The families and partners are also told they will have to give up work soon to become full time ‘carers’. Getting yourself acquainted with residential care is recommended. All of this advice is well-meaning, but based on a lack of education and misperceptions and myths about how people can live with dementia. This sets us up to live a life without hope or any sense of a future and destroys our sense of future well-being; it can mean the person with dementia behaves like a ‘victim’ or ‘sufferer’, and many times their care partner as a martyr.”

She emphasised, “We need psychosocial interventions, and research into them.”

“It’s very clear to me that I could’ve stayed at work, and paying taxes.”

Kate made reference to some of the groundbreaking research which is happening to look at improving quality of life.

“HTA Goal-oriented cognitive rehabilitation in early-stage Alzheimer’s disease: multi-centre single-blind randomised controlled trial (GREAT)” is a collaborative research trial with Prof. Linda Clare as the chief investigator.

Early intervention offers the possibility of helping people with early-stage dementia (PwD) and their carers to manage the impact of the disease on everyday life, and reducing or delaying the progression of disability. “Cognitive rehabilitation” involves identifying realistic and achievable goals reflecting areas of everyday activity where the PwD experiences difficulty due to changes in memory and other cognitive abilities, and wishes to see improvements. needs are addressed in the context where they arise.

One thing’s certain: Kate has played a blinder. In speaking so powerfully about the importance of wellbeing for individuals who’ve received a diagnosis of dementia, she has put a new set of cards on the table. Far from dismissing the effort for finding the cure, which she calls ‘the golden egg’, Kate has drawn attention to the 470 million or so people in the world living with dementia, and the crucial need for them to be involved in policy. Kate Swaffer undoubtedly has left a significant legacy in rights for individuals living with dementia which has been carefully now seeded in a number of jurisdictions.

Dementia Advisory Group

Oral health for living better with dementia in residential care settings is a whole person affair

Whole person care involves mental health, physical health and social care. It is not easy to see at once how oral health fits into this.

The need for good oral health is significant with older adults for a variety of reasons. The progression of dementia varies enormously, as does the ability to cope with dental treatment. Some people are comfortable with a visit to the dentist, while others find the whole experience very distressing. The dentist, together with the person with dementia and their family or carers, will discuss treatment needs and agree on the best treatment plan. A dentist can provide guidance and support on how to assist in cleaning another person’s teeth. The technique will vary depending on the individual concerned. Oral health in nursing homes has sometimes been described as “deplorable” with evidence that “a high proportion of elderly nursing home residents suffer from poor oral hygiene and oral health neglect”. Oral problems are partially, perhaps, a result of barriers to dental services and changed self-perception of oral health on the context of multi-morbidity.

There are two main types of dental disease – gum (periodontal) disease and tooth decay (dental caries, more commonly known as cavities). Gum disease can cause inflamed and bleeding gums, gum recession (where the gum tissue is reduced, causing the roots of the teeth to become exposed), loose teeth and bad breath. Both can cause discomfort or pain and can lead to the development of infection. Indeed both pain and infection can worsen the confusion associated with dementia.

Oral neglect, as well as poor oral health and oral hygiene, is highly prevalent among the institutionalised elderly. Residents with dementia, who are functionally dependent and cognitively impaired, appear to be worst affected. This is a challenge to the dental profession as the proportion of frail elderly with dementia and disabilities is projected to rise over the coming decade in most developed countries of the world.

Problems swallowing (dysphagia) and bad oral health have been found to be strongly associated with aspiration pneumonia in frail people. Consequently, adequate oral health care in care home residents with dysphagia may decrease the number of respiratory pathogens and diminish the risk of aspiration pneumonia.Furthermore, improvement of oral health care may improve the swallowing and cough reflex sensitivity. Risk factors of aspiration pneumonia, such as dysphagia, should be prevented in frail older people whenever possible. Aspiration pneumonia, an inflammatory condition of lung parenchyma usually initiated by the introduction of bacteria into the lung alveoli, is causing high hospitalisation rates, morbidity, and often death in frail older people. There are therefore clear repercussions of bad oral health and physical dis-ease.

It is argued that in the last three decades, the oral health of nursing home residents has worsened as a consequence of inadequate mouth care. The trend toward worsening oral health among nursing home residents is complicated by the rising numbers of persons entering nursing homes with some or all of their natural dentition; more than half of all nursing home residents are dentate. Residents, especially those with dementia, require meticulous daily mouth care because they often lack access to routine dental care. Older adults form plaque more quickly than their younger counterparts when mouth care is not routinely performed; this may be due to gingival recession, which exposes more tooth to the oral environment, and to reduced salivary flow.

The majority of nursing home residents arrive dentate. As their dementia progresses, the person may lose the ability to clean their teeth, or lose interest in doing so, and carers may need to take over this task. Older adults experience faster plaque production than younger adults because of the dual effects of gingival recession and reduced saliva production. The reasons for the poor oral health of nursing home residents may be multifactorial. Physical and cognitive impairment makes oral hygiene difficult, making residents increasingly dependent on other people and often resulting in poor oral cleanliness. Because reduced cognitive functioning frequently results in greater levels of dependency, including for oral care, carer are of crucial importance in maintaining oral health.

Poor oral hygiene causes periodontal disease which in turn creates tooth loss. The remaining teeth shift, causing loss of occlusal surfaces and subsequent chewing and swallowing problems. These problems place older adults at risk for malnutrition. Other systemic diseases associated with poor oral hygiene include aspiration pneumonia, diabetes, and coronary artery disease. The need for good oral hygiene is complicated by the dependence many nursing home residents have on others to provide basic care. Most require assistance in at least one activity of daily living while more than half are dependent on others for all activities of daily living, including mouth care. In addition, dental treatment provision to nursing home residents tends to be emergency-based, with little time spent on prevention, especially among vulnerable residents with cognitive and physical impairment. Oral health is therefore intimately linked to living better with dementia in residential care settings.

Additionally, the rate of edentulism is declining; the current generation of elderly has more teeth than previous generations and will live longer than their parents. Many older patients have no remaining teeth and are termed edentulous. These patients may or may not be wearing full or complete dentures and complete denture wearing may be rendered more difficult with the advent of dementia. Tooth loss from periodontal disease causes the remaining teeth to shift to the point where occlusal surfaces no longer articulate, interfering with chewing and swallowing functions and placing residents at risk for malnutrition. The reason for this is that successful (complete) denture wearing depends to a great extent of what is termed neuromuscular control. It is not uncommon, therefore, for carers of edentulous patients who are living well with dementia to request that new dentures be made for such patients. In reality, new dentures may not result in an optimal outcome, although the concept of template or copy dentures makes it easier for patients to adapt to new dentures.

The combination of increased dependency and increased retention of teeth will lead to a high-risk cohort with complex dental needs and more prone to dental diseases. Residential aged care facilities are residential facilities provided to frail elderly whose care needs are such that they no longer remain in their homes. Not only does the nature of the disease result in deterioration of oral health; anticholinergics and neuroepileptics used for its treatment result in salivary gland hypo-function that increases the risk for oral and pharyngeal diseases. One of the main side-effects of these drugs is a dry mouth. Saliva acts as a lubricant and dry mouth can cause problems with dentures, including discomfort and looseness.

Moreover, care-workers have reported several “barriers” in caring for elderly with cognitive impairment and behavioural difficulty, with oral hygiene among the most difficult care-giving task. This might reflect differences in culture between dental and nursing staff. It is possible that the dental professionals’ knowledge about the consequences of neglected oral care make them believe that oral care is a more important part of total care than do other health professionals. In addition, many nursing homes aim not to use force or restraint. The law says that before a legal decision about the use of force or restraint is made, trust-giving behaviour should be attempted.

Nevertheless, there is emerging evidence that there is a lack knowledge of the specific oral hygiene requirements of people living with dementia, or do not have the time needed for adequate oral care. Nursing home culture change aims to improve resident quality of life and staff well-being by aligning structures and processes of care with residents’ needs and preferences. It embraces a comprehensive philosophy so as to structure practices and policies such that they are consistent with individuals’ welfare. Within this whole person approach, discrete components of culture change practice are many, and include promoting the resident’s meaningful engagement The ultimate vision of a person-centred culture change is that individualised care will improve quality of life and outcomes. Outcomes of interest include those of both a psychosocial nature (e.g., boredom, helpless) and, increasingly, of a health-related nature (e.g., physical function, pain, pressure ulcers). What may be missing from the promotion of culture change is the incorporation of individualised, evidence-based protocols shown to improve daily care. And there is a strong social component to the effects of oral health malaise.

So, oral health in living better with dementia in the residential care setting is very much a whole person affair.

The introduction to my chapter on leadership in my follow up book on wellbeing in dementia

“All Russia is our orchard. The earth is so wide, so beautiful, so full of wonderful places. [Pause]. Just think, Anya. Your grandfather, your great-grandfather and all your ancestors owned serfs, they owned human souls. Don’t you see that from every cherry-tree in the orchard, from every leaf and every trunk, men and women are gazing at you? if we’re to start living in the present isn’t it abundantly clear that we’ve first got to redeem our past and make a clean break with it? And we can only redeem it by suffering and getting down to real work for a change.”

Anton Chekhov, “The Cherry Orchard”



The #G7dementia leaders imposed some degree of finality by promising a dementia treatment or cure by 2025. But they are not real leaders in this context as there is no guarantee that they will physically there, in which case it will be impossible to attribute blame or success to them. And those did appear rather oblivious to much of the world around them. ‘Living well with dementia’ is exactly the sort of arena which will not benefit from a hierarchy of power, mandating people how to live well; a request not to think of elephants will quite often elicit the opposite result. For a start, most people do not wish to be micromanaged. It is clear nonetheless that members of the public will wish any correct diagnosis of dementia not to be unduly delayed, and to be given appropriate guidance about their condition. Such advice might vary from how to cope with depth perception difficulties, to how to deal with being unfairly dismissed in an employment context. These are valid considerations, and in a way analogous to ironing out inefficiencies; but that is where the comparison with a business ends. It is impossible to measure success in a dementia policy in terms of productivity.


Leaders in healthcare, including the dementias, will increasingly have to discuss matters with leaders in other disciplines. Whilst the followers might be diverse, it is clear that leaders will have diverse aims. Such aims might include promoting world-class research in publications and conferences, or might include world-class innovations for knowledge management in the service. Or leadership might involve, as a clinical leader on the ward, explaining to colleagues why there might more to a plan than medication. It is likely that more momentum for living well with dementia will come from people living with dementia, and caregivers, rather than Pharma or even large charities which focus on cure, care and prevention. Much of it does involve breaking down silos, but the converse of this is to build strong networks with a shared mission. The idea that a person with dementia can be at ease with himself or herself and his environment is a very powerful one, and not easily achieved by consideration of manipulations of single receptors in the central nervous system. The case for improving the quality of life of people should be coherently communicated, and not get sidetracked by what costs more; it turns out that technology is more of a burden on the NHS budget than the ageing population in any case. The trick is of course not to throw the baby out with the bathwater in any change of approach, and, as a leader, to keep composed even if the world dynamics in dementia policy appear very turbulent.



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“Leadership is the art of mobilizing others to want to struggle for shared aspirations.”

“McLaughlin: Leadership has so many definitions that sometimes that term loses its meaning. How do you define it?

Kouzes: Leadership is the art of mobilizing others to want to struggle for shared aspirations. That part about struggling for shared aspirations may set our definition apart.”

I’ve also been though the motions of detailed study of leadership styles in my own MBA.

But this definition of James Kouzes really struck a chord with me.

This is of course not a particularly impressive ‘leadership style’, one sedentary guy with an iPad mini with a large product placement in shot?

shibley pic

I have fleetingly thought too about who is the exact target audience of my book.

While ‘Living well with dementia’ is not a ‘self help book’, it is a fact that many people living well with dementia have warmly received the book.

In fact, in the front row in my line of vision to the left, two people sat, a son and his mother with dementia.

It turns out the son found my talk ‘inspiring’, and thanked me, in front of his mother, for saying which he perceived as powerful: that it’s more important to concentrate on what people can do in the present, rather than they cannot do.

And what did I conclude was the driving intention of an international policy plank about living well with dementia?

I concluded that a positive wellbeing is about a person being content with himself or herself, and his or her own environment.

This is not an issue of being drugged up with a ‘cure for dementia’. It is though saying something equally positive about dementia, if not more positive.

I do not consider the Alzheimer’s Show an “event with a buzz”. For me, it was like a wedding of a best friend. I was thrilled to meet Chris, Jayne, Suzy, Rachel, Louise, Natasha, Joyce, Nigel, Tracey, Tony, and Tommy, some for the first time.

And what you see is what you get with them.

Chris concluded, “Living better with dementia would’ve been a better title.”

And Tommy agreed.


Chris and Tommy live well with dementia.

I agreed too. In a nutshell, ‘living well with dementia’ runs the danger of imposing your moral judgment or ‘standards’ on what living well with dementia is.

For me, living well in alcoholic recovery means not downing a bottle of neat gin when I get up, like I used to do in late 2006/early 2007 when I hit a rock bottom. (The actual rock bottom was when I had a cardiac arrest and epileptic seizure heralding a six week coma in the summer of 2007, rendering me physically disabled.)

But it’s a big thing for me that people who are living well with dementia are actually interested in – and supportive of – my book.

You see, I concede that I don’t live with a dementia yet to my knowledge – though many London cabbies conclude that I do [nicely], when I tell them the title of my book and they see me struggling get into their cab.

Chris pointed out something at first glance very true today – that I didn’t have many friends living with dementia as friends then, when I was writing my book.

Chris is in fact wrong. “Any” not “many”.

Tommy said something curious recently, that it’s ironic that it took an event such as the Alzheimer’s Show in Manchester to bring us all together.

But he’s right. We’re not there for any other reason than to share experiences.

Suzy commented that ‘I get it’. And I do think do, for all sorts of reasons, many of which were quite unintended.

I am currently writing ‘Living better with dementia: champions challenging the boundaries”. It’s going to be a toughie, but I think I can do it.







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If only Kate were there too…

Why I am extremely grateful to key individuals for thoughts on my new book

I have spent ages thinking about the contents of my new book on living well with dementia. I submit the manuscript at the end of October 2014, so I have a bit of time yet.

I think the easiest part is the published literature base on which to draw the narrative from. This gives an useful indication about the direction of travel of approaches to dementia.

It’s ‘awkward’ singling people out, but on this occasion, if I may, I would like to.

Jo Moriarty (@aspirantdiva) is at the Social Care Workforce Research Unit at King’s College London.

“Jo joined the Unit in 2002 following the transfer of the National Institute for Social Work Research Unit to King’s College London. Research interests include social work education and dementia care training for social care professionals.  … Jo is the Editor of the Innovative Practice Section Dementia: the International Journal of Social Research and Practice.”

Kate Swaffer (@KateSwaffer) is a close friend of mine, and we share between us many concerns in common. I don’t think Kate needs any introduction. Kate has educated me on various initiatives working globally, especially in Australia; but the odd combination of warmth and grittiness of the Dementia Alliance International, a group of people living with different causes of dementia, continues to inspire me.

Chris Roberts (@mason4233) is also a very good friend of mine. Although I’ve never met Chris, we’re hoping to do a @DementiaFriends session at BPP Law School on 1 December 2014.

Norman McNamara (@norrms) doesn’t know he has influenced my book, but the chapter synthesising the competing needs of persons with dementia, their friends and family and others in the use of GPS trackers as smart technology involves a balanced proportionate response on the basis of human rights, as well as an understanding of the cognitive neurology of why people with dementia might want to walk out of their local environment.

Tony Jameson Allen (@TJA_evonet) is somebody who shares EXACTLY my sense of humour. I once had a nice pizza with Tony off Oxford Street, and I explained there my wish to give a coherent explanation of the basis of ‘sporting memories’ based on current neuroscience. I intend to weave in an explanation of musical playlists for reminiscence too here.

I would not of course be so grandiose as to call my friends here a ‘steering group’, but a number of principles have come to light.

I now do not feel it would be useful to anchor the book in a single policy document, however currently influential, as it is indeed true policy documents come and go. They are often highly biased to the interests of their authors or their ‘paymasters’.

I cannot promote global policy if emanating from a single charity. This really does run the risk of promoting charities at the expense of promoting awareness of issues to do with living well with dementia, although often the two may collide.

There are huge problems with firmly entrenching the book in England only. The narrative is hugely relevant to Scotland, Northern Ireland, and Wales, as well as Australia and Argentina, where indeed the audience may even in fact be more sympathetic.

I do not feel that my book on dementia should be intended as a ‘bible’ of policy written for policy wonks. The people I have always been most interested in influencing are people with dementia, people in the care and support network, students (who include future leaders of tomorrow both within and external to the workforce), and practitioners.

I have, paradoxically, no interest in influencing academics, in that I really share the pain of academics needing to advance their own research grants and their own agendas. One of the best things about not being paid to do my research is that I can look unemotionally at the issues.

The other ‘issue’ is that I do not wish to articulate a vision too far forward in the future. Jo pointed me in the direction of a THES fantastic article on writing a textbook. Otherwise, the book ends up being too speculative and quite unhelpful for people currently at the coalface.

I have had it up to my neck in people ‘seeking opportunities’ in dementia. I of course do not wish to be hypocritical.

At quite large cost to myself, in the sense I am paying for my own flight, accommodation and conference pass, I have agreed to do a book signing session for ‘Living well with dementia’ at the @AlzAssociation conference in Copenhagen later this month. The details are here.

I will also likewise on my own present my non-clinical research on policy at the @AlzheimerEurope conference in Glasgow later this year. The details are here.

But I wish people ‘seeking opportunities’ well. I understand their pressures as small enterprises. But I have an agenda of my own – to share with the outside world the various ins- and outs- of how a person living well with dementia can interact positively with his or her own environment. This is not the same as promoting ‘person-centred care’, currently in vogue. And this is certainly not the same as promoting ‘purse-centred care’ as my friend Kate calls it (#KoalaHugs).

Political parties come and go. The greatest challenge I feel for persons living with dementia, their friends and families comes from the politicians mucking things up for them.

I think fixating on a cure serves to promote a narrow set of interests.

Bear in mind I’ve been in this field on-and-off for the last seventeen years.

Don’t promote your agendas in my name, please.