Explaining the cognitive neurology of the reactivation of ‘sporting memories’

The dementia of the Alzheimer type is the most common type of dementia in the world, and is characterised typically in the earliest stages by problems in short term learning and memory. A prominent message relating to the notion that it is possible to live well with dementia is that, with careful attention, a person living with dementia might be able to focus on what he or she can do, rather than what he or she has difficulty with. Of course, trying to persevere at anything which is difficult can be inherently demoralising for the best of us. That’s why to put a person living with dementia of the Alzheimer type, where very old memories can be very well preserved compared to a memory for what was done yesterday, at ease, it is easier to engage in conversation about things way in the past.

Declarative memory is recall of factual information such as dates, words, faces, events, and concepts. Remembering the capital of France, involves declarative memory. Declarative memory is usually considered to be explicit because it involves conscious, intentional remembering. Procedural memory is recall of how to do things such as riding a bike.
Declarative memory  is of two types: semantic and episodic. Semantic memory is recall of general facts, while episodic memory is recall of personal facts. Remembering the capital of France and the rules for playing football uses semantic memory. Remembering what happened in the each game of the World Series 2014 uses episodic memory, for example. Declarative memory can be emotional or non-emotional.

fig 1

The bookcase analogy is well known to anyone who’s done ‘Dementia Friends’.

Fig 2

Here is the explanation openly searchable on YouTube.

While there is more to a person living with dementia than the clinical diagnosis, the clinical diagnosis – if correct – does give very good clues normally as to which parts of a distributed neuronal network might be affected early on in disease. Whilst most attention has been given to pharmacological interventions, there is increasing recognition that psychosocial interventions may have comparable value, and may be preferable in some contexts, e.g. where medication may be ineffective or have negative side-effects.

Anecdotal and empirical evidence suggests that emotionally important events hold a special place in memory, where they are bestowed with a unique subjective vivid character. The successful retrieval of information from long-term memory requires the integrated activity of multiple brain regions. And the information does not only come from post mortem studies.

“Sporting Memories Network” was established to promote and develop the use of sporting memories to improve the wellbeing of people through conversation and reminiscence.

“Bill’s Story” is a good introductory film to this unique initiative, only lasting a few minutes. Little was known about Bill Corbett’s sporting prowess as a fine footballer playing for Celtic. It became known through participation in the memory group that his personal history included playing for Scotland. So he became ‘unlocked’ as a person.

A diagram of how the brain might approach a ‘football memory’ is shown below.

fig 3
The cognitive and behavioural processes involved in reactivating a football memory are especially interesting, given what we know about their putative neural substrates. Reacting a ‘football memory’ is indeed a brilliant example of taking advantage of what a person living with dementia can do, rather than what he or she cannot do.

Some time last century, an amazing advance in the cognitive neurology of memory was made. In 1957, William Scoville and Brenda Milner published the now famous case of patient H.M. Scoville surgically removed large parts of the medial temporal lobe (MTL; including the bilateral hippocampi) in H.M., to relieve him from intractable epilepsy. This is the part of the brain quite close to the ear. The surgery was successful in controlling his epilepsy, however, it also elucidated that the hippocampus is essential for the formation of new memory traces. H.M. was severely impaired in learning episodic information and facts (declarative/explicit memory), although the formation of non-declarative (implicit) memory such as procedural memory was not disrupted.

Early theories proposed to explain the neuropsychological basis of emotion perception (Cannon 1929; James 1884) emphasised the importance of feedback from bodily responses to an emotionally salient stimulus in determining the nature and extent of emotional feeling, but they did not distinguish between the identification of the emotive stimulus and the affective state produced in response to this.

But not all memories are the same. In dementia of the Alzheimer type, as I have already described, older memories can be quite well preserved compared to the memory from yesterday. In humans, damage limited to the hippocampus produces temporally graded retrograde amnesia, with relative sparing of remote compared to recent memory. This observation forms the cornerstone of the idea that as memories mature they are reorganised in a time-dependent manner. In the late part of the 19th century, the French psychologist, Theodule Ribot, described how memory loss after brain insult was often related to the age of the memory: the effect on more recent memories was typically greater than that on older (or more remote) memories.

This observation forms the basis of the idea that memories are reorganised in a time-dependent manner. Within this general framework, the relative contributions of different brain regions may vary as a function of memory age. Accordingly, some regions may play important roles in the expression of newly formed (or recent) memory, but their contributions may fade over time. Conversely, other regions may play preferential roles in the expression of older (or remote) memories.

What happens when you get confronted by ‘football memories’?

Memories of events evoking strong emotions, especially fear, selectively persist because emotion enhances event-memory retention. The hippocampus is crucial in processing declarative and spatial long-term memory, whereas the amygdala drives emotion processing and emotional memory formation.

Whether or not emotion enhances event memory retention is controversial. By using photographs with affective valence as both encoding and recall stimuli, some authors found that emotion accelerates episodic memory encoding. However, others speculate that emotion simply heightens the subjective sense of remembering, and that increase in the subjective ratings of vividness, recollection, and belief in accuracy does not indicate accurate memory.

Overall, it appears that emotion can enhance memory accuracy, particularly for the fact that an event occurred, but emotion’s impact on the sense of the vivid recollection of details exceeds its influence on memory for those details per se. In other words, emotion boosts memory accuracy to an extent, but it affects the subjective sense of recollection even more.

The vital thing to note is that these memories are not divorced from us as people. They are intimately tagged in the timeline of our past. Autobiographical memories (ABM) of past experiences can be often elicited spontaneously; something we encounter in our environment or in our thoughts directly transports us back in time to mentally re-experience that one particular event.

But was it a happy match? Or was it the worst match of your life?

Gist is an interesting concept.

“Gist” can be defined as the global (overall) emotionality, whereby the scene can be rapidly identified as positive, negative, or neutral without having to explore the individual (local) features of the scene. To take as an example, a picture of the aftermath of the “Twin Towers scene” would hold a negative gist, whereby every scene feature would be negative and related to the overall “story,” e.g., buildings being demolished, aeroplanes crashing—there is not just one negative feature but an overall negative emotional valence. It is also possible that aversive, and potentially dangerous, stimuli, are processed as more immediately salient for survival than positive stimuli that usually signal feeding, procreative, or social opportunities.

The special nature of faces

Cognitive psychologists have been interested in this phenomenon because there is evidence that faces are somehow perceived differently than other patterned objects, and thus, may represent a ‘special’ class of stimuli.
In the human lesion literature, the recognition and identification of famous faces has commonly been used to study the neural regions critical for retrieval of information from long-term memory. It is generally acknowledged that famous faces produce automatic retrieval of person-identity information from long-term memory

“The smell of Bovril”

Visual memories do not operate in isolation.

One of the most profound questions for neuroscientists of all interests is why the human brain has exploded relatively in size, compared to its counterpart in the animal kingdom. Prof Horace Barlow, a previous chair in physiology at Cambridge, thought this was fundamental for example why the visual part of our brain – the visual cortex – was so substantially different to the film of the eye recording images in the fly’s retina.

As Nigel Slater wrote in the Guardian on 23 July 2006:

“I am not the only one for whom many of life’s most intimate details come flooding back at the sight, smell and taste of particular foods. Everyone I speak to seems to have a favourite or, in some cases, a most hated dish with which they can recall particular moments of their lives.”

I have just provided examples of innovative approaches from art, music and “football memories” which comprise an alternative to pharmacological treatments for dementia. This is an important thrust of my thesis. Enhancing wellbeing through such priorities must be a legitimate aim of dementia friendly communities, and we are in desperate need of high quality research with the aspiration of living better with dementia.

[I gave a cognitive neurology explanation of ‘sporting memories’ in chapter 15 of my book ‘Living better with dementia: good practice and innovation for the future’ (Explaining the Triggering of Sporting Memories in People Living Better with Dementia) published by Jessica Kingsley Publishers (2014).

This was the first description of this in the world to my knowledge.]

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A need for ‘dementia awareness’ for some English commissioners?

It’d be wrong for me to suggest to commissioners how to do their job. I have met very few commissioners, or indeed managers in health or social care. When I was a junior doctor at major teaching hospitals in Cambridgeshire and London, I had met none in fact. I think living with a condition, and knowing how to prepare for a good death when the time comes, are positive things – overmedicalising someone emphasising illness overly, at the expense of appreciating personhood, is not helpful?

I perceive increasing ‘dementia awareness’ as very important, in fact. I included a section on the “Dementia Friends” programme, delivered by the Alzheimer’s Society and Public Health England, in my second book on dementia (“Living better with dementia: good practice and innovation for the future“); my first book, based on the NICE QS30 standard for promoting wellbeing in dementia, won best book of the year award for health and social care for the BMJ Book Awards in 2015 (click here to download the pamphlet on this).

The background is as follows. We are now fast approaching 1 million people in the UK living with dementia, and dementia is the most feared condition amongst adults. This fear can inhibit people from seeking a diagnosis, often leading to social isolation and loneliness at a time when support and care are crucial. “Dementia Friends” was intended to bring about a social movement so that people with some knowledge of dementia could help to combat stigma, prejudice and discrimination against people living with dementia.

It clearly is not enough to view success as the “number of friends”, as this gives you absolutely no indication as to the quality of understanding of the efficacy of an awareness campaign, in much the same way a political leader might be criticised for reading too much into the size of his rally. For some time people have been asking for some more sophisticated qualitative feedback on the efficacy of Dementia Friends, given the millions of pounds of taxpayers’ money invested in it; and no such information has yet been forthcoming.

That ‘awareness’ campaign, I see, as very much on the basic tier of education. On a much higher tier, there’s a need to have a framework for identifying a basic set of skills, knowledge and behaviours for dementia, and a good contribution to this is the “Dementia Core Skills Education Framework“.

One could legitimately ask what the point of the National Clinical Director for dementia is. Why legitimately? Prof Sube Banerjee, who co-wrote the 2009 English dementia strategy, has justified why such a strategy exists (in part his answer included raising the stakes of the importance of dementia given the size impact of dementia on society.)

But part of Prof Banerjee’s answer has always been a need to identify some sort of strategic vision as well as tactics – and this I feel is something to do with the issue of ‘why national?’ The five year English dementia strategy was never renewed after it expired in 2014, only to be succeeded by a number of unwhelming piecemeal contributions from the Department of Health.

There could have been an attempt to flesh out the elements formally of an integrated care pathway (such as preventing well – diagnosing well – living well – caring well – supporting well – dying well – grief), but apart from a blogpost from Alistair Burns there is not much written about this from the Department of Health. Whenever this, anyway, is presented in public, the abject failure to include ‘caring well’ speaks volumes.

It’s as if the contribution of specialist professionals to dementia care is on occasion wilfully airbrushed out. Whatever your opinions about residential homes, it is a fact that there are hundreds of thousands of people living with dementia and other co-morbidities in care homes, and therefore their right to health, enshrined under international law, is of fundamental importance to their wellbeing (codified in s.1 Care Act 2014). But the health of people with dementia is of course of fundamental importance to the rest of the system, take for example admissions, readmissions or delayed discharges.

It’s simply inadequate to let all commissioning decisions be driven by the bottom line and the notion of ‘avoidable admissions’. The theme of avoidable admissions is potentially dangerous in framing a hospital admission as failure. Young people (below the age of 65) live with dementia too, but the older you get the more likely is your chance of developing one of the hundreds of dementia, and with this an increased likelihood of a need for health and social care services. An unintended consequence of ‘avoidance admissions’ is furthering a culture of institutional ageism; what a previous consultant of mine in a prestigious flagship tertiary centre for general medicine used to warn me as ‘don’t stuff my wards full of old people on frusemide’.

I have contemplated before whether you need experience of something to manage it. For example, there are professors of haematology who’ve never had a blood disorder. This is sometimes put in the phrase: “you don’t need to have been dead to be entitled to go to a funeral”. It’s something I mused over when studying 360feedback as part of my specialist performance management training in my MBA.

But the impact of the importance of physical and mental health is undeniable. If you feel that some residential homes can inadvertently appear to have a closed culture, being at worst perceived as ‘fortresses’ or ‘prison states’, it is surely unacceptable for people languishing in care homes without their health needs being met. I might be talking about a person with capacity problems  having trouble communicating, but a difficulty exacerbated by the fact his hearing aid batteries ran flat months ago. Or a person with dementia with the occasional hallucination having real trouble in perceiving reality, a handicap made worse by the fact the NHS has delayed her cataract operations many times.

Vic Rayner is the executive director of the National Care Forum. Vic is excellent.

Her blogpost of 26 February 2016 (yesterday) caught my eye.

Take this section.

Where the heart is

The majority of growth in care home beds across England is in dementia specialism, with a national figure of 90%, and a not for profit comparator of 85%. This is not surprising in the context of commissioning priorities, and the raising of social care thresholds. However, what is interesting is the proportional growth in residential provision in the not for profit sector, in comparison to the wider UK sector. Two thirds of growth in the not for profit sector was in residential provision, and one third in nursing – in contrast to the growth patterns across the sector as a whole which have favoured the development of nursing provision over residential. This was mirrored in the closure patterns in the not for profit sector, where more care home beds were lost from nursing homes than residential settings.

We know that recruitment of nurses to the sector is a key issue for NCF members, and earlier this year NCF produced, in partnership with Skills for Care, a powerful document outlining the contribution of nurses to social care. In addition, the long awaited increase in NHS funded nursing care rates may encourage more not for profit care providers to think more positively about growth in nursing.”

I am all aware that as ever ‘money is too tight to mention’, but I really can’t emphasise enough that the health and social care systems really do operate as one. The distinction between health and social care for dementia is unacceptable.

The amount we’re prepared to spend nationally on health and wellbeing should not be an issue which we only contemplate conveniently at the time of Government spending rounds. And just because we ‘ringfence’ NHS spending does not mean we should be prepared to see social care implode and be driven to its knees. Nearly a fortnight ago, the King’s Fund and Nuffield Trust published a graphic and damning report “Social care for older people“, identifying some of the problems in the reality of provision of dementia care – including domiciliary care.

CCGs, clinical commissioning groups, are by law statutory insurance schemes, so they take a decision of spending based on their assessment of risk in a defined population – except no-one knows the ideal size of this population. This lends itself to liberalising the market, or atomising policy decisions. If then you reduce policy to the local level, coincidentally maximally convenient for rationing of scarce resources, and you approach national care through personalised health and social care budgets or postcode prescribing, then you might well ask what the point of a National Director for dementia actually is, together with a national strategy for dementia which expired two years ago?

I am mindful that as things get more frustrating the tendency is to look for people to blame, but, in the best spirit of an organisational learning culture, I would like to suggest that some input from experienced professionals and practitioners is necessary now in running of the NHS and social care in dementia. It might be heard to measure the impact of a clinical specialist nurse on care continuity across different care settings, on palliative and end of life care, on advice about caring for the carers, but not everything one values can be easily measured in monetary terms. As it happens, it is easy to make a financial case for clinical specialist nurses for their impact on avoidable admissions, which I mention earlier.

But I do think the health and social care for dementia would be massively improved for awareness for those commissioners who would like to ‘brush up on their skills’. This means less attention to shiny new product gimmicks, less time on Adobe Illustrator making sexy infograms, less time counting the ‘number of friends’ – but actually doing something to promote high quality patient care at the grassroots.

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My talk for BGS West Midlands (22 September 2016) on “Living well with dementia”

Thanks to the BGS West Mids group for a kind invitation to talk to them on the topic of ‘Living well with dementia’. I have not received a diagnosis of dementia which puts me at an disadvantage, but I will be giving a ‘big picture overview’ of some of the issues which are really hot topics now.

The full programme is here.

There’s been endless confusion about what ‘integration’ is. Like the word ‘Brexit’, it can conjure up a number of different possibilities, so ‘liking integration’ in itself can mean nothing.

Certainly, if you were to take out a blank sheet of paper, you wouldn’t want to start from here. The health and social care systems are worse than a complex maze, and even people with years of knowledge of the system can find themselves completely lost. The term ‘post diagnostic support’ for many takes on the demeanour of a limp lettuce, when it’s clear a lot more needs to be done to make this a meaningful reality.

In my talk for the regional BGS meeting next week, I’d like to take this representation as a starting point.


Karen Dening once suggested in a previous Dementia Congress that she saw care like making a cake – it wasn’t a case of simply having the right ingredients, but it mattered how much you had of each. Likewise, I feel that all elements I mention here are essential ingredients of any approach to dementia care, but how much you have of each is a fine art rather than a technocratic exercise.

  1. Rights.  Rights are not just legal ones, enshrined in statutory documents, but also are moral ones. Whatever one’s law in one’s jurisdiction, we should not tolerate wilful neglect or abuse of people ‘in care’, for example. And rights, which operate at the highest level whatever domestic arrangements, might mean that carers should accompany people with dementia in a hospital admission (right to private and family life), as in John’s Campaign. Or it could mean that persons with dementia who are incontinent should not be kept in soiled underclothing for days on end due to negligence (right to be free from degrading treatment). The question is of course how you make these rights ‘real’ for people, rather than an abstract exercise, and there’s been a lot of attention, some of it successful, in embedding a rights-based culture in provision of dementia care.

2. Interoperability. This term popularised recently by NHS England means that we could have shared systems for free flow of data in different care settings. Whilst there are concerns about confidentiality, the corollary, disclosure, can be seen as imperative for good care, where in real time there is a clear trail of encounters of any person with dementia with health and care services. If we believe in the notion that everyone is entitled to the best care whatever the setting, it is essential that we try to minimise barriers to information sharing between people involved in care, including with people with dementia themselves.

3. Health. A right to health is pervasive internationally from the World Health Organisation, and it’s often forgotten that health is an integral part of wellbeing. This means that people with dementia should not be languishing with unmet health needs in care homes, for example falls, fractures, infections. Some of it really is not rocket science – for example, a person with dementia whose hearing aid’s batteries are not replaced inevitably will face further obstacles to communication than need be. This entire approach means that no part of the person’s health and identity is left behind, and means attending to, if requested, enquiries about oral health, or sexual health, for example.

4. Interdependence and independence. No part of the system can function in isolation. We know that if one part of the system is weak, the rest is affected as in a ‘domino effect’. Only this week, for example, the King’s Fund and the Nuffield Trust presented their sobering report on social care in older people.

“The picture that emerges is of social care providers under pressure, struggling to retain staff, maintain quality and stay in business; local authorities making unenviable choices about where to make reductions; a complex set of causes of delays in discharging older people from hospital; and the voluntary sector keeping services going even when funding was curtailed.”

In any ‘care transaction’, despite the desire for reciprocity between the person providing the care and the person receiving the care, there can be, even with the best of intentions, a power imbalance. A bad situation to be in is being dependent on care, but likewise we need to acknowledge that none of us can function well on our own. And we can all learn from each other. Wouldn’t it be amazing if we can learn from palliative care and end of life care approaches from the hospice movement to improve care in other care settings, for example?

5. Enablement.

Take for example Newham Adult Social Care:

Enablement (sometimes called re-ablement or re-enablement gives adults the opportunity and confidence to relearn and regain some of the skills they may have lost because of poor health, disability or after a spell in hospital. Enablement is carried out at your home. by specially trained enablers for up to a 6 week period. Enablers will work with you to enable you to do these activities yourself. Equipment may be provided as part of the enablement service to promote independence. There is no charge for the service for 6 weeks.”

Shifting the framing of dementia as a medical ‘problem’ which needs a ‘cure’, to one where dementia is a disability producing handicap and impairments which can be addressed to improve people’s lives, has been a big step forward. The trend of de-institutionalisation to independence has been a welcome one if people feel they are genuinely supported. And there are excellent examples say of hospital at home or community nursing providing a preferred alternative. Because of parity of esteem, the focus can’t just be on physical health – the mental health needs of people with dementia (e.g. anxiety or depression) should be identified in a timely way, and like the improvement of physical health in dementia (e.g. stopping smoking, avoiding ‘bad’ cholesterol’), enablement can accompany mitigating against excess disability and decline in dementia.

6. Multi-morbidity

Dementia never travels alone. Whilst dementia is not simply a disease of ‘old people’, your risk of dementia increases with age, and as you get older the trend is for you to live with more than one condition. It’s not uncommon for people with dementia to be living simultaneously with four or five conditions. The world of drug trials ideally involves younger patients with minimal comorbidity with no pharmacy. The reality is of people living with several long term conditions, with many drugs interacting with one another in an unpredictable way.

7. Complexity

There is complexity everywhere you look in the system, ranging from complexity of medical and social care issues a person is presented with, to complexity of how the health and care systems are organised.

I think, at least, recognition of the relevance of ‘complex, adaptive systems’ is vital.

Sarah Fraser and Trisha Greenhalgh (2001):

  • Neither the system nor its external environment are, or ever will be, constant
  • Individuals within a system are independent and creative decision makers
  • Uncertainty and paradox are inherent within the system
  • Problems that cannot be solved can nevertheless be “moved forward”
  • Effective solutions can emerge from minimum specification
  • Small changes can have big effects
  • Behaviour exhibits patterns (that can be termed “attractors”)
  • Change is more easily adopted when it taps into attractor patterns

8. Person-centred care (PCC)

I don’t really want to go into a history of person-centred care in dementia here, but I think we’re very lucky in the field of dementia to have the rich legacy of the work of Prof Tom Kitwood. A person with dementia is at all times in continuity with his or her past, present and future (even though the event of diagnosis can be a significant life-changing one in itself). And a person with dementia is intimately connected to his or her own environment. Put bluntly, it’s impossible to provide ‘person-centred care’ (howeversodefined) if you don’t look after your own staff in a person-centred way (leading to burnout), if there’s rapid turnover of teams on a daily basis (for example due to rota gaps), patients in hospital physically move location (e.g. boarding to outlier wards), and so on.

9. Care planning

I think it would be nice if people don’t make dismissive comments of others involved in promoting health and wellbeing. The advice in fact couldn’t be clearer – that the person with dementia, carer and professional should all share in the development of care plans (see the RCN/Carers Trust “Triangle of care”). This projection of future care issues might be a good way to anticipate problems, such as in avoiding hospital admissions (say in ambulatory care sensitive conditions).

10. Wellbeing

Promoting wellbeing is s.1(1) Care Act (2014).

And the statutory provision is really helpful, actually, here.

Care Act

Again, it’s a question of ethos. It’s more fruitful, arguably, to consider ways of ‘promoting wellbeing’ rather than the rather clunky word ‘activities’. Activities can inadvertently sound task-oriented rather than person-oriented. Promoting wellbeing might be done in a number of wonderful ways, not just restricted to the infrastructure of health and social care buildings, such as arts and theatre, music, gardens/outdoor spaces and gardening, massage, yoga, for example. Widening access should be a policy goal, and possibly feasible through ‘social prescribing’.

Could all this as such herald the ‘end of the disease era‘?

“…The time has come to abandon disease as the primary focus of medical care. […] The changed spectrum of health conditions, the complex interplay of biological and non-biological factors, the raging population, and the inter-individual variability in health priorities render medical care that is centered primarily on the diagnosis and  treatment of individual diseases at best out-of-date and at worst harmful…”

(Tinetti ME, Fried T. The end of the disease era. Am J Med 2004;116:179–85, cited in Cesari et al., 2016).

Time will possibly tell.



Cesari M, Marzetti E, Thiem U, Pérez-Zepeda MU, Abellan Van Kan G, Landi F, Petrovic M, Cherubini A, Bernabei R. The geriatric management of frailty as paradigm of “The end of the disease era”. Eur J Intern Med. 2016 Jun;31:11-4. doi: 10.1016/j.ejim.2016.03.005. Epub 2016 Mar 18.

The slides

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My book launch – speakers confirmed (integrated dementia care)


The event will be chaired by @lisasaysthis and I am delighted we will be joined by an unique set of brilliant speakers: @allyc375, @maneeshjuneja, @lucyjmarsters, @nurseslim, @learnhospice, @wendypmitchell and @aspirantdiva.

I am delighted that, as on previous occasions, we’ll be joined by @dementiaboy @rivkahmiar @mason4233 and @jaynegoodrick, and we’ll be welcoming too @3spirituknz.

I am honoured that Prof @martinrossor and Prof Dawn Brooker have allowed me to dedicate my book to them.




How to provide outstanding quality care and services for people living with dementia in all care settings




Every person living with dementia is entitled to the highest standards of wellbeing and health and social care services. This in-depth, evidence-based book identifies how outstanding quality care might be achieved, whether in residential or home-based settings.

Experienced dementia researcher Dr Shibley Rahman highlights the key contemporary underpinnings of integrated care that are required for wellbeing for living with dementia, including technology, staff performance, leadership, and intelligent regulation of services. The book addresses the major challenges to promoting person-centred care, and tackles difficult conversations around spirituality, sexuality and dying well. The crucial importance of promoting physical and mental health is emphasised. Taking into account recent developments in NICE guidelines and Cochrane reviews for dementia, this book presents an opportunity for all those involved in the provision of care for people with dementia to maintain a focus on delivering the best care possible, and to engage with the wider issues surrounding wellbeing. The book will be especially useful to commissioners following the NHS ‘new models of care’ “vanguards”.


Key Points


Authoritative – the author is an extremely active and highly regarded expert in the field.

References the recent changes to the NICE guidelines for dementia.

Practical focus on how to support the wellbeing of people with dementia in care homes and home care.



Target audience

Dementia care practitioners, managers, service providers and commissioners, policy makers, and peer support groups.

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Dementia’s calling card is complexity. Simplify it at your peril.

I have never thought the banal ‘dementia friendly checkouts’ idea should be immune from criticism for fear of offending people who have promoted it in press releases.

Take for example this.

You’re 52, and your GP thinks your problems getting overwhelmed by everything and finding yourself around, as well as remembering names, and repeating yourself, might be due to the onset of Alzheimer’s disease. You’re less convinced; your partner recently passed away having been diagnosed with cancer, and you yourself have been nearly depressed.

You’re waiting for memory clinic to do a more lengthy assessment. And in the meantime – you walk into a supermarket and see a huge sign with corporate branding of ‘dementia friendly checkout’.

You otherwise feel ‘fine’, and actually have yet to tell anyone you are being investigated for dementia, something which in fact you are very frightened about. I think revealing to the world your possible diagnosis of dementia by entering a ‘friendly checkout’ would be an appalling idea. And what about reading in public a leaflet from the checkout entitled ‘You’ve just been diagnosed with dementia. Now what?’

It’s all very well having ‘friendly’ initiatives, but not if the purpose of them is to promote the promoters of them more than to encourage in a non-aggressive way inclusivity and accessibility. Sometimes you do have to wonder why and how common sense gets left behind by all these calls for action alliances. Maybe it’s a power thing.

On the other hand, I’ve been very impressed with the introduction of ‘slow shopping’.

The idea is now being trialled by one Sainsbury’s store in Gosforth, Newcastle-upon-Tyne, every Tuesday from 1pm to 3pm. During this time, people who want to use the service are greeted at the entrance to the store, where a Sainsbury’s member of staff is on hand to assist customers with their shopping. Chairs are also put out at the end of aisles to enable people who struggle to stand all the way round the shop to have a rest.

I think this is a brilliant approach, where you don’t require a person should become defined by a medical label. If one genuinely believes in seeing the person and not the disease, it is beyond contempt that you should want to define somebody by a label.

I myself am physically disabled, so immediately I can see the merits of having chairs at the end of aisles. Also, ridiculous though that the term ‘dementia friendly’ is, this particular example demonstrates why ‘dementia friendliness’ is much more than slick banners, branding and big money. Being truly inclusive is being thoughtful about culture.

I feel the only way to achieve this is to seek actively the opinions of people most likely to make use of your initiative. And also – if you also believe in ‘no more something for nothing’, and believe in the true spirit of co-production where nobody is left behind, you will wish – especially if your revenue as a charity or supermarket is enormous – to pay people for their wisdom as consultants.

‘Dementia friendly hospital wards’ is not just about pretty colour schemes, with dodgy supporting evidence. It’s about delivering a truly person-centred approach. That means having staff introduce themselves properly and regularly. That means buzzers being answered in a timely manner. That means adequate explanation for investigations,

And the same goes for the culture of that supermarket. It’s more about people not being rushed than about having glossy leaflets at the checkout promoting your charity brand.

I’ve often thought why the ‘big guns’ never admit they’re wrong.

Mark Twain was right with his observation, I feel.


But it does mean people who know a thing or two about dementia have to stick their neck above the parapet, even if they’re deliberately excluded from conferences or undermined by people with long titles.

Thankfully people who are true leaders are more interested in doing what’s right not just doing things right.

And it can be a very lonely path for some of us.


But dementia is not simple. It never travels alone – a person living with dementia is likely to be living with a number of other conditions. Because of this, a multi-pronged approach is needed, with all parts of the system properly funded including social care (we know the current problems of the NHS being in deficit). That’s the only way we’re going to get anywhere on this through what often appears like a bewildering maze.


Continuity of care is paramount, especially at ‘care transitions’. People should be supported wherever possible to live independently, but they must always have their human rights respected. We need to acknowledge palliative approaches for dementia with the help of people who are experienced in this, say clinical specialist nurses; and acknowledge the expertise of under-utilised people such as the hospice movement and all allied health professionals.

Above all, dementia is not just about friendly checkouts. It’s about complexity.



Dr Shibley Rahman’s book “Dementia health, care and wellbeing: a person-centred integrated approach” (with main foreword by Prof Sube Banerjee) will be published by Jessica Kingsley Publishers in early 2017.

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“Activating” dementia

I remember telling one certain person in May 2014 that she was about to become ‘activated’ as a person with dementia. She nearly jumped a foot in the air.

The context of this remark was an article which appeared in the Telegraph


which revealed


Language matters.

When I was compiling lists of patients for the post take ward round as a junior doctor in Cambridge, you’d frequently see patients described as “acopia” (meaning, of sorts, “can’t cope”) or “social admission”). When patients nowadays here of themselves becoming ‘activated’, they sound invariably quite amused, if not consequently quite miffed.

Prof David Oliver recently noted.

But this is of course classic creation of a new market to create profit. Self management has become such an ‘important issue’ nationally, even ahead of the severe funding crisis in the NHS, that even Buzzfeed News covered it a few days ago.

“Hundreds of health and medical apps abound on Apple’s App Store, but for
consumers, there’s no easy way to tell which ones are effective and tested — and which ones are useless, or even harmful. Medical experts and regulators have questioned apps that claim to calculate insulin dosages for diabetics, diagnose melanoma risk, measure blood pressure, care for patients with schizophrenia, and offer reproductive health advice but don’t mention contraception.”

Sadly, many fads presented as a boost to healthcare particularly from current NHS innovation gurus are there for a ‘fast buck’.

Rebecca Robbins gives a very raw example in the Scientific American:

“The brain-training giant Lumosity is recalibrating its strategy and facing new challenges as it reels from a federal crackdown on bold health claims about its digital games.

The company behind the Lumosity brand, Lumos Labs, has dramatically cut back on TV advertising. It is facing sharp questions about its much-touted research, which found that users enjoyed a bump in IQ. And there are signs that the growth of Lumosity’s once impressive mobile app business may have stalled.

Meanwhile, the Federal Trade Commission is preparing to send out rebates to thousands of customers who may have been drawn to Lumosity by its misleading ads. The agency has verified 13,000 requests for refunds, which will be funded by $2 million from Lumosity, but has yet to disclose how much each customer will receive.”

We are not all the ‘perfect consumer’. To exert perfect choice we need perfect information, and not even the very best of us are rational 100% of the time. Some of us, with or without dementia, can make appalling decisions, even with full legal mental capacity.

Recently – I asked a NHS patient what he happened to think of self management apps.

He answered “pretty useless, Shibs”

He further explained that his most direct experience of them was in the measurement of blood glucose, and said that ‘accessibility’ was still inadequately thought about by developers. Some people living with diabetes have eyesight problems, common causes being cataracts and retinal disease, so one would have thought that visual inclusivity would have been a factor to bear in mind, if you cared about widespread adoption of innovation.

Patient activation is thought to capture a number of core components of patient involvement, each of which is important for active engagement and participation. It is defined as ‘an individual’s knowledge, skill, and confidence for managing their health and health care’ (Hibbard et al 2005).

The basic concept is:

Patients with high levels of activation understand their role in the care process and feel capable of fulfilling that role. Individuals with long-term conditions who are more highly activated are more likely to engage in positive health behaviours and to manage their health conditions more effectively.” (p. 7; Hubbard and Gilburt, 2014).

I don’t like the word ‘activation’ as it sounds like pressing a button.

At worst, the term itself implies that patients can be very lazy, whereas my experience is that the vast majority of people like me living with various long term conditions is that not a moment goes by without that condition being ’thought about’.

I feel parity of esteem, a longstanding aspiration in health policy meaning that mental health is meant to be of inferior priority to physical health, demands that we should be in principle be keen to develop ways of implementing patient activation for people with mental health needs, as well as say people needing ‘treatments’ for physical illness.

At the risk of NIMBYism, I am always worried that the army of a million or so people living with dementia get ‘left behind’ in such policy approaches.

I believe somewhat that part of the reason for this is due to stigma and discrimination, which can envelope dementia, and which still persists despite multi-million pound blockbuster efforts such as ‘Dementia Friends’.

Take for example this discussion of the use of ‘patient activation’ in a Hispanic population.

“Labeling a patient as having a psychiatric condition can result in providers’ questioning and doubting whether the patient’s complaints are due to a medical condition or are part of his or her psychiatric disorder, a phenomenon known as diagnostic overshadowing.”

(p.734; Cabassa et al., 2014)

Part of the major problem in developing innovations in dementia has been the obsession with ‘monotherapy’ in the medical model. But we know people rarely take drugs on prescription in isolation. The swathe of literature on patient activation generally seems to make short shrift of the idea of polypharmacy, or any social inequalities in compliance (e.g. living conditions).

In dementia, cognitive problems might prevent adequate use of ’activation’, say if you’ve got problems in learning and memory from the dementia of Alzheimer type.

But it doesn’t stop there. Say you’re in terms of behaviour particularly risk-seeking or impulsive, a feature of some with the behavioural variant of frontotemporal dementia.

Or say you happen to have some variant of Alzheimer’s disease where you are quite apathetic (this is now, for rather political correct reasons, being re-framed as ‘motivationally challenged’).

In a way, we’ve been here before. The same burning desire to implement personal choice and control, independent living, ran roughshod over such concerns with personal budgets in dementia. I dare say we will revisit this shortly with integrated personal commissioning for joint health and care budgets in dementia.

For some people, there should be a safeguarding component engaged by the Care Act, arguably

One can see though a parallel for dementia, however.

There is no doubt that this is a well intentioned approach.

Take for example this comment on the need for ‘patient activation’ for people with chronic schizophrenia.

“Recommendations for improving the quality of physical and mental health services suggest changing from more paternalistic models of care to those that are person-centered and person-directed … Clinically useful activation measures to assess individual differences in ‘activation’ (requisite knowledge, skill, confidence, beliefs for managing personal health and care) are important in tailoring care and intervening when care needs change—e.g., a less-activated patient may need additional information and encouragement compared to one more activated.” (Green et al., 2010; p.327).

When I was doing postgrad exams for medicine in 2004, you always had to introduce yourself to the patient in the communication skills mock-up. More than a decade later, this got re-invented as #hellomynameis. Likewise, the actual thrust of patient activation is nothing new. We as junior physicians always had to ask about the beliefs, concerns and expectations of patients, especially when starting a new drug. We saw this yesterday in the mainstream media when the case for/against statin drugs for lowering cholesterol re-exploded onto the mainstream media.

“Key factors associated with patient activation in schizophrenia may differ from those found in persons with physical illness. For instance, cognitive deficits and serious psychiatric symptoms in schizophrenia (e.g., negative symptoms) may interfere with the consumer taking an active role in illness management, altering the relationship between activation and health outcomes. In addition, psychiatrists report being less likely to involve consumers” (Kugler, Salyers and Lysaker, 2013; p. 339).

People living with dementia should be afforded dignity and respect, like every other human being. This is sadly not always true. But sadly it is not always true in the NHS and social care institutions (though, equally, lots of outstanding care exists.) If we are to progress safely and in a timely way from hospital-based care and support to one based in people’s own homes, it’s essential we iron out any inequity and unfairness in the system, especially for some who might be considered ‘vulnerable’. Whilst such approaches are often sold on the basis of being a ‘cost saving’, a false economy for those people who happen to be vulnerable will emerge, and this I feel is in no-one’s benefit.


Cabassa LJ, Gomes AP, Meyreles Q, Capitelli L, Younge R, Dragatsi D, Alvarez J, Nicasio A, Druss B, Lewis-Fernández R. Primary health care experiences of hispanics with serious mental illness: a mixed-methods study. Adm Policy Ment Health. 2014 Nov;41(6):724-36. doi: 10.1007/s10488-013-0524-2.

Green CA, Perrin NA, Polen MR, Leo MC, Hibbard JH, Tusler M. Development of the Patient Activation Measure for mental health. Adm Policy Ment Health. 2010 Jul;37(4):327-33. doi: 10.1007/s10488-009-0239-6. Epub 2009 Aug 29.

Hibbard JH, Mahoney ER, Stockard J, Tusler M (2005). ‘Development and testing of a short form of the Patient Activation Measure’. Health Services Research, vol 40, no 6, part 1, pp 1918–30.

Hubbard, J, Gilbert, H. (2014) Supporting people to manage their health. An introduction to patient activation, London: King’s Fund.

Kukla M, Salyers MP, Lysaker PH. Levels of patient activation among adults with schizophrenia: associations with hope, symptoms, medication adherence, and recovery attitudes. J Nerv Ment Dis. 2013 Apr;201(4):339-44. doi: 10.1097/NMD.0b013e318288e253.

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An audience with Prof Dale Bredesen at the Royal Society of Medicine

About 27 years ago, I had lunch with a guy who claimed he had invented cold fusion in a test tube, offering unlimited energy at room temperature. His name was Prof Martin Fleischmann, and he had a distinguished career including a chair in electrochemistry at Southampton. I remember him even now. I don’t think that that claim was ever resolved, but I do remember the general mistrust he had received from the scientific community. It was something akin to the treatment of Uri Geller and his extraordinary powers to bend spoons.

I rarely like to go to events these days for personal reasons, but I did manage to make it to Wimpole Street to the Royal Society of Medicine yesterday evening to attend a talk on how a nutritional supplement could ‘reverse cognitive deficits’ in dementia.

The mentor of the speaker, Prof Dale Bredesen, was a man whose work is very familiar to people in my field which is dementia – Prof Stanley Prusiner. Prusiner is prof of neurology at UCSF, and himself was awarded the Nobel Prize for physiology and medicine in 1997 for his groundbreaking work on prions (proteinaceous particles). These particles in the brain can be radically changed in shape from normal to abnormal, causing the brain to die in certain dementia conditions – the most famous of which is Creutzfeldt Jacob  disease, though others exist including kuru and Gerstmann-Slraussler-Scheinker. Prions exist in the normal brain, and one had been left wondering what the normal evolutionary advantage of such biology in the brain is. In 2002, I was then a junior physician on Prof Martin Rossor’s firm – Prof Rossor headed up the cognitive disorders and dementia unit, a post now held by Prof Nick Fox, who used to be our specialist registrar. The variant Creutzfeldt Jacob disease was a very real phenomenon (as it is now) when I was a junior. I remember patients having brain biopsies for their rapidly progressive dementias – it was just after the time there had been concern about the transmission of disease from ‘mad cows’ to men. Indeed Dr Giovanna Mallucci was my Specialist Registrar too, and now is a professor in Cambridge – a lovely person in her own right. I remember doing lumbar punctures for us all normally on a Wednesday.

I dare say there is a fine line between genius and not-so genius. I found Prof Dale Bredesen a lovely guy, very measured and sincere about his research, cleverly reasonable, with a genuine drive to make a difference to people living with dementia. His work is on a personalised medicine to people with cognitive deficits, which he described as not just mnemonic (amnestic) but also perceptual (e.g. in face recognition, i.e. prosopagnosia). And he was merely describing his clear results where patients had vastly improved given a nutritional supplement. Bredesen’s ability is no question – his junior posts included senior positions.

Modern medicine can have massive side effects. Even ‘harmless statins’ can rarely give people crashing renal failure in a condition called rhabdomyolysis. One is left wondering why a natural instinct is to question nutritional ‘interventions’ with seemingly more scrutiny than drugs in our own British National Formulary.

The push-pull effect of this type of research definitely includes the pull away from traditional Pharma research – which has had a disappointing score sheet.

Kate Swaffer, Chair of Dementia Alliance International, talks about a ‘prescribed disengagement’ expected of people newly diagnosed with dementia. Bredesen drew attention to one of the worst aspects which I have found awful from the US jurisdiction, of people unable to take out long term insurance from health maintenance organisations on account of being diagnosed with dementia.

In the US insurance-based system, where hopefully the NHS is not being led despite strong internal forces within our UK politics, if you’re at high risk, an insurance company doesn’t want to take you on for fear of being given a shellacking in paying for your future healthcare needs.

Bredesen I feel is right to question not just the culture of cure from the medical profession and biomedical industry (one which is being challenged in England in an iceberg-level of pace by social prescribing), but specifically the culture of drugs which have been validated through a process of drug trials for monotherapy. I believe firmly dementia’s hallmark characteristics are complexity and multi morbidity, whatever the age group, and this tends to entail polypharmacy. The thing is these drugs are validated in isolation, but it is a bit of a human experiment to guess how they might work in a different age group in combination.

But here Prof Trisha Greenhalgh brings up a good point. Whilst I’m a ‘believer’ in the n = 1 methodology made famous in social psychology research methodology, is this really endorsing anecdotes?

So it seems sensible indeed as Bredesen to tackle like with like, i.e. take a complex approach to a complex problem. In this framing of the narrative, no one size fits all; people are likely to benefit from a complex approach say of particular dietary supplements (or not). The magic bullet approach of acute illness seems fundamentally ill suited to the management of chronic long term conditions, something which the current NHS seems to be acknowledging slowly (but to do so properly will require social care to be adequately respected and funded.)

Prof Dale Bredesen is, though one would be frightened to accuse him so, is in fact caught between a rock and a hard place. He is expected to run larger trials with more ‘power’ to show his effect his real – and yet this approach could annihilate any dramatic benefits he has for particular individuals. This is in a way a general criticism of any approach regarding research in person-centred outcomes. But perhaps doing bigger trials will bring out the heterogeneity in course which does happen certainly in people with Alzheimer’s disease (better called a ‘syndrome’). I asked a question whether he felt he was being forced to make something so complex into a simple narrative, and Bredesen in a typically polite and pleasant manner suggested it was a ‘balance’. Still, the work is being published and the external scrutiny I hope will benefit him and his work.

With so much money ‘big money’ being wasted elsewhere in dementia on what is well and truly rubbish, it seems to me an injustice not to look more carefully at this work. He might be a ‘boat rocker’ in the modern parlance of the Twitter cult, but this might subject him to unnecessary attitudes such as to disenfranchise him and alienate him from the mainstream stream of discussion where I believe he should be. Bredesen talked at one point of reversing ‘Ockham’s razor’ to ‘Razor’s Ockham’, but I feel instinctively the tough nut that Bredesen needs to crack is sorting out correlation from causation. He should not have such a mixed bag of people with dementia and ‘pre-dementias’ such as SCI or MCI, as he can’t take it as given that all people with MCI progress to dementia. This is simply not borne out by the current evidence, howeverso Petersen and influential colleagues decide how to diagnose MCI. There are some people who will get spontaneously better without any intervention – in fact there are some forms of dementia, which have a markedly fluctuating cognitive time-course. One got a twang of these ‘accidental fortunes’ when Bredesen presented a person who had been exposed to a lot of mould at home but had been given therapy to ameliorate cognitive deficit; the issue here is of course how much we are all exposed to mould. Whilst it is important not to confuse correlation with causation, it is equally important for Bredesen not to get side-tracked by confounding variables – it could be a third thing which he feels to be a key feature of some people’s dementias could just be something which is extremely common (take for example the swathe of research looking at whether herpes simplex or cold sores can cause dementia).

Where I feel Bredesen is very right, irrespective of the actual story over this, is the need to ‘see the person, not the disease’, and indeed there could be much to learn here from other cultures.

I found Prof Dale Bredesen very likeable indeed, and genuinely thoughtful. The one concern I do have is one of US medicine in general – of over investigating people – but this is nothing to do with him. I think it is pretty likely in fact that certain lifestyle changes will massively benefit some people in slowing down or even preventing outright the onset of dementia. If this can be done with minimal side effects or draining on scarce resources it is an approach which could be much more equitable than a very costly drug developed from the traditional Big Pharma route. I feel it is the responsibility of people to give this work a fair hearing, and to take it further.

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Dementia health care and wellbeing: a person-centred integrated approach

I have now submitted the full manuscript for my book below. From the blurb below, it should be obvious what the book is about.

Foreword by Prof Sube Banerjee

Prof Sube Banerjee, Chair of Dementia at Brighton Centre for Dementia Studies, has confirmed that he’ll be doing the main foreword to my third book on dementia. The first two were Living well with dementia: the importance of the person and the environment (which won BMJ Best Book of the Year Award 2015)  (Rahman, 2014); and Living better with dementia: good practice and innovation for the future.

Reviews of my 2nd book

These were especially good.The main themes of my third book are as shown below.

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

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

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

This new book is an immaculately researched guide to living with dementia in England in the 21st century, covering the subject from policy to lived experience, but always with consideration and compassion. There is no better introduction to the challenges and complexities that dementia brings to individuals, families and society. (Geoff Huggins, Director of Health and Social Care Integration, Scottish Government)

This book is informative and challenging in equal measure. It not only provides a thorough analysis of the issues currently facing dementia care, but it also offers a refreshing and thoughtful critique of the many challenges. Each chapter carefully combines research evidence, practice issues and policy influences, and contextualises these within the experience of those living with dementia, including their carers.

Whilst this book is complex and thought-provoking – I believe it is a highly welcome counterbalance to current thinking on how to improve the lives of all those who are affected by dementia. It will force the reader to challenge their own thinking about dementia, not just as an illness but as a social construct, and as such I would highly recommend it.
(Rachel Thompson, Professional & Practice Development Lead for Admiral Nursing, Dementia UK)

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

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

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

This is a well-written, extensively researched, easy to read and important book for anyone interested or working with dementia.
Rating: Highly recommended.
(Fenella Lemonsky, mental health service user researcher, Mental Health Today)

I would highly recommend this book to anyone who is interested or has contact with people living with dementia.
A particular strength of this book is the connection of policy to practice and practical implications. There are a number of examples where good practice can help to inform practical solutions for the future, making this a book that has value and use on many levels. A further asset is the conclusion chapter. This excellent summary draws everything together from the previous chapters under key themes and really helps to pull this book together.
I would highly recommend this book to anyone who is interested or has contact with people living with dementia; health and social care professionals, public health workers, service commissioners and researchers and students in this field. This is also a book that would be useful to members of the general public as well.
(Lynne Partington, head of research, Evaluation and Technology, The End of Life Partnership, Cheshire Nursing Times)

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. (StudentNurse.net)

Title of the new third book

Dementia health, care and wellbeing: a person-centred integrated approach
Dr Shibley Rahman (with main foreword by Prof Sube Banerjee
March 20th 2017
Jessica Kingsley Publishers


How to provide high quality care and services for people living with
dementia in residential settings and at home


Every person living with dementia is entitled to the highest standards of wellbeing and health and social care services. This in-depth, evidence based book identifies how high quality care can be achieved, whether in residential or home-based settings.

Experienced dementia researcher Dr Shibley Rahman highlights the key underpinnings of integrated care that are required for wellbeing for living with dementia, including technology, staff performance, leadership, and intelligent regulation of services. The book addresses the major challenges to promoting person-centred care, and tackles difficult conversations around spirituality, sexuality and dying well. The crucial importance of promoting physical and mental health is emphasised. Taking into consideration the recent changes to the NICE guidelines for dementia, this book presents an opportunity for all those involved in the provision of care for people with dementia to maintain a focus on delivering high quality care and to engage with the wider issues surrounding wellbeing.


Authoritative – the author is an extremely active and highly regarded
expert in the field.
References the recent changes to the NICE guidelines for dementia.
Practical focus on how to support the wellbeing of people with dementia in care homes and home care.


Dementia care practitioners and professionals (including leads), managers, service providers and commissioners and policy makers.

The book is centred around some key themes.


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Dementia health care and wellbeing – a person-centred integrated approach. My book for April 2017.

before editing

Dr Shibley Rahman

Queen’s Scholar BA (1st Class) MA PhD (all Cambridge); MRCP(UK) LLM MBA

Forewords by

Prof Sube Banerjee

Lisa Rodrigues

Lucy Frost

For publication: March 20th 2017 Jessica Kingsley Publishers

About this book:

This book brings different strands in dementia bang up to date. It coincides with the publication of the new NICE guidance “Assessment, management and support for people living with dementia and the carers” to be published in November 2017, as well as publication of the “Dementia Core Skills Education and Training Framework”. It is a coherent evidence-based synthesis of the importance of a person-centred integrated approach, and discusses how integrated care pathways might facilitate this. It is sometimes forgotten that a fundamental right to health underpins wellbeing across all settings, including in care homes (and nursing homes), at home and in hospices, but it is often forgotten that physical health is an important component of wellbeing. This book therefore covers a diverse range of topics including also mental health in care homes, meaningful activities in residential settings, the whole health and social care ecosystem including getting into and out of hospital in a timely manner, as well as enablement through targeted support. Key themes such as dignity in health, care and wellbeing straddle key strands in personhood, human rights and the biomedical approach, and these themes are of critical prominence in service improvement through research, regulation and nurturing of staff. The book will be of help to people living with dementia, carers, dementia leads, care home managers, commissioners, professionals and practitioners, and academics, as well as interested members of the public.


Chapter 1

Preventing well and diagnosing well

Chapter 2

Overview of caring well

Chapter 3

Caring well: physical health and medication reviews

Chapter 4

Caring well: mental health

Chapter 5

Cognitive stimulation, cognitive rehabilitation and life story

Chapter 6

Oral health and swallowing difficulties

Chapter 7

Promoting wellbeing

Chapter 8

Sexuality and spirituality

Chapter 9

Research, regulation and staff

Chapter 10

Care homes and integrated care

Chapter 11

Supporting well and independence

Chapter 12

Dying well and end of life

Chapter 13

Living well at home

Chapter 14




It is my great pleasure to dedicate this book to two people.

First, I am thankful to Prof Martin Rossor. I worked for Prof Rossor in 2002 as a junior at the National Hospital for Neurology and Neurosurgery, Queen Square. His contribution to clinical care and research in dementia has been exceptional.

Second, I would like to give special thanks to Prof Dawn Brooker. Whilst I have never personally worked for Prof Brooker, her contribution in personhood and dementia has been remarkable against the reality of the NHS, and she personally has been inspirational for many leaders in dementia around the world.

I should like to thank especially Prof Sube Banerjee, Lisa Rodrigues and Lucy Frost for kindly writing forewords to this book. And finally, I should like to thank enormously Chris Roberts for giving me the idea to write this book, the third in fact in my ‘trilogy’.




Dr Shibley Rahman

London, September 2016




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