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I am going to give four free public lectures on dementia in Holborn, London

Shibley Rahman 0 Comments

It is with great pleasure that I can announce that Prof Carl Lygo and Prof Peter Crisp have given me permission to host four free public lectures on dementia at the BPP Law School, London.

Lecture Theatre Law School 
Wed  June 10th   6 pm – 7 pm : session #l1
Thu July 23rd  6 pm – 7 pm  : session #l2
Thu Aug 20th  6 pm – 7 pm : session #l13
Thu Sep 17th  6 pm – 7 pm : session #l14

I am indebted to Joerg Plechinger who kindly took this picture of me giving a talk at the recent Alzheimer’s Disease International conference in Perth, Western Australia; the conference took as its theme, “Cure, care and lived experience”. 11148818_10206396604176960_7020433520352739075_o

 

Dementia is important.

 

“Dementia” constitutes a large number of conditions. Most people mean dementia to mean an abnormal process affecting the brain, which leads the brain to becoming smaller, affecting any of the brain’s functions, say from planning and working memory to complex visual perception. There are 1000 billion billion nerve cells in the human brain, by and large linked to one another in some direct or indirect way, and that’s why fathoming out dementia, and the effect it has on persons, communities and societies, difficult. Despite decades of trying, and numerous failed attempts, there is currently no cure for the progressive dementias, and resources are allocated in the most part to offering drugs which do not slow down the progression of disease, but have a limited time window in efficacy on symptoms if at all. A much better approach, and this is generally cost effective for us as a society, as well as being a morally valid option, is to encourage and implement a culture of living better with dementia, to benefit people living with dementia and their ‘substantial others’ as other people have called them.   I  myself have written two very influential books on quality of life in dementia, read by a very wide range of people including those who’ve received a diagnosis of a dementia themselves, caregivers, professionals (including doctors, nurses and allied health professionals), and commissioners. The books are: “Living Well with Dementia: The Importance of the Person and the Environment for Wellbeing” (published in February 2014 by Radcliffe Health) and “Living Better with Dementia: Good Practice and Innovation for the Future” (due to be published in July 2015, by JKP Books). Prof John Hodges, one of the world’s most leading authorities on the semantic variant spectrum dementia conditions, described my book at the time thus in his Foreword:

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

This is an important arm of policy, with a huge plurality of evidence, behind the veneer of cheap sloganeering by some others. books

 

BPP Law School is a United Kingdom-based provider of professional and academic legal education and is one of the largest in the country (approximately one third of all entrants to the English legal profession are educated by BPP Law School). I will be hosting these four lectures in the BPP Law School, Holborn. This school is where many students are pursuing the ‘Legal Practice Course’, the bridge between the academic world and professional life in a solicitors law firm, and the ‘Bar Professional Training Course’, the course designed to ensure that students intending to become barristers acquire the skills, knowledge of procedure and evidence, attitudes and competence to prepare them, in particular, for the more specialised training in the twelve months of pupillage. The law school is actually a stone’s throw away from the Royal Courts of Justice, one of the largest and most outstanding buildings in the Strand where you can see the country’s leading lawyers including Silks in action. Tickets for my events will be allocated on a first come first served basis through EventBrite, and will be advertised on Twitter (@legalaware and @dementia_vision). The topics of the lectures are as follows.

Wed June 10th   6 pm – 7 pm : session #l1
Dementia: where are we know? From “friendly communities” to “inclusive communities”.
Thu July 23rd  6 pm – 7 pm  : session #l2
 What’s best for ‘choice’ in dementia services? Budgets or rights?
Thu Aug 20th  6 pm – 7 pm : session #l13
 Dementia: why integrated, joined up, services matter.
Thu Sep 17th  6 pm – 7 pm : session #l14
 Cure, care and research in dementia: do we need to fall out about this?
They will be given in the ethos of the Royal Institution Christmas Lectures, in other words in an easily accessible style, meant for members of the public who are generally well informed about current affairs, willing to learn in an open minded way, but who have no prior knowledge of the dementias.

I also intend, following a smart idea by Prof Carl Lygo, to record podcasts to boost outreach on a number of diverse topics in dementia; this might include, for example, important topics such as culture diversity, case finding and screening, Big Data and pharma, and so on.

Pathologising Alice

Shibley Rahman 0 Comments

I’ve now seen the ‘Still Alice’ film twice. Once I viewed it with loads of adverts on a bootleg website, and the other time I saw the film without interruption in the large Riverside Theatre of the Alzheimer’s Disease International conference last week in 2015.

The film ‘speaks to’ a specific gene mutation, pre-senilin 1, familially inherited, affecting a young professional with the dementia of the Alzheimer type in a high income country which is relatively resourced well.

There’s not a single physiotherapist, occupational therapist, dietician, or speech and language therapist. It’s just a single clean-shaven clinical neurologist, in a white coat, who can take time off to attend international conferences.

There’s no scene about Alice being recruited into a research trial. Alice even has a brush with residential care, when she goes to visit a home. Alice never discusses a cure by 2025.

Alice is given a diagnosis of Alzheimer’s disease, not any of the other hundred or so dementias. The author cannot possibly cover all possibilities – but she has touched upon two predominant narratives for dementia, “Alzheimerisation” and “medicalisation” of dementia.

Many people across many jurisdictions find themselves lost in a wilderness following a diagnosis of dementia. And indeed many find themselves subject to a ‘prescribed disengagement’, where they are told to pack up their job while their friends circle contracts.

In England, the direction of travel is towards integrating health and social care, with personalised care plans, pooled budgets, clinical care coordinators. Worldwide, the greater scrutiny being given to dementia has led to a rude awakening of the limitations of the medical model of dementia. The supertanker has, despite of Pharma, or maybe even as an abreaction to Pharma, has instead increasingly embraced a social model of disability, with recognition of the implementation of human rights.

Beth Britton once wrote a blogpost saying ‘Cure and cure – let’s not fight about it”. In main party politics, in many jurisdictions, we have an adversarial system. People play their expected rôles, as per “The Truman Show”. Often hearing the other side’s argument helps you to crystallise your own perspective.

The slogan “care for today, cure for tomorrow” is a serious one for some. Evangelists of the cure narrative claim it might be possible to eradicate Alzheimer’s disease if not the hundred dementias eventually. It is not clear in what form the therapy is going to take, such as arresting all dementias in a pre-clinical stage (highly hypothetical).

It has somewhat become more than a slogan or mantra. It fits very neatly into a neoliberal ideology of a small State. If the Pharma experiment fails in Alzheimer’s disease, you can bet your bottom dollar that the situation will be one of socialising the losses, rather than privatising the profits, pardon the pun.

The character Dr Alice Howland does, however, to all intents and purposes wish to live better with Alzheimer’s disease. She appears in coffee shops, going to her daughter’s play, and playing on apps on her smartphone. This is as much as I can go into without providing massive spoilers, of course.

The husband, of course, is awarded high performance grants for biological research, rather than research into living well or care.

But the film, excellent though it is, doesn’t ‘speak to’ low and income countries, but why should it? But the emerging situation is well on the RADAR, with initiatives such as the 10/66 programme of Alzheimer’s Disease International (ADI).

It is worth, however, being forced to think what particular aspect of dementia the film is ‘raising awareness of’. In the panel discussion, the general consensus was that it raised awareness, and it is tempting to find an excuse to dislike the good intentions of Hollywood possibly out of sheer envy.

And indeed we are coming from a very very very low baseline. I have reservations about the term ‘touched by dementia’, but unless you are ‘touched by dementia’, or happen to be involved with dementia somehow otherewise, it’s possible you can end up knowing very little about it. I have met many people who can’t tell me a thing about dementia.

It is not so much awareness which is needed, but outright education. It’s this education we need to address stigma, discrimination and prejudice.

Every long journey starts with the smallest step, and we are in a better place overall when it comes to putting dementia on the agenda. A minority of campaigners do the ‘cause’ a disservice by spreading misinformation about dementia, but, reservedly, any publicity tends to be welcome publicity if language guidelines are observed.

Alice is ‘Still Alice’. That was, by far, the most important message of all.

Does combating stigma offend the ‘rights based approach’ in dementia?

Shibley Rahman 0 Comments

Let’s for the sake of brevity keep the definition of ‘stigma’ short – but of course it has to be attempted in some way.

Stigma, according to the current Oxford English Dictionary is defined as follows firstly.

“A mark of disgrace associated with a particular circumstance, quality, or person:the stigma of mental disorder to be a non-reader carries a social stigma.”

One of the issues about human rights is that you can’t ‘pick and mix’ human rights. You have to take the full package. You can’t buy into some, and not the others. They apply to everyone however.

In vogue at the moment is a ‘rights based approach’, but, since mooting the issue, Daniella Greenwood (who is here at the ADI Conference 2015) voiced some concern it could encourage a checklist approach.

Checklists are essentially useful, I feel, as the information in them, and can provide inappropriate totality.

Like ‘person centred care’ (the phrase that is), the operationalisation and marketing can obfuscate the real sentiment.

For example, prior to the necessary legislation, racial discrimination was lawful in South Africa, so Gandhi was the ‘boat rocker’ to use modern NHS slang.

There was nothing on the checklist about racial discrimination so notionally it was not a legal issue.

Freedom of expression is a human right, article 10 in the English jurisdiction.

It immediately for many conjures up the famous saying,

“I do not agree with what you have to say, but I’ll defend to the death your right to say it.” ― Voltaire

Along with #JeSuisCharlie and other horrific incidents, there has been further scrutiny of the wider operation of this right.

Take for example this, “The Right To Offend? Mehdi Hasan Denies ‘Absolute Right’ To Freedom Of Speech”.

” Speaking opposite Times columnist David Aaronovitch at a HuffPost/Polis debate, on the right to offend, Mr Hasan argued free speech was being “fetishized” and claimed many free-speech campaigners in the west were guilty of “brazen hypocrisy.”

“How can you construct a civilised, cohesive society if we go round encouraging everyone to insult each other willy nilly? Yes we do have a right to offend but it’s not the same as having a duty to be offensive. You have a responsibility not to go out of your way to piss people off. I have the right to fart in a lift, but I don’t do it because it is offensive.

“Some people want the right to be offensive but then get cross when people are offended.” “

There are various ways in which ‘dementia’ has become medicalised, which has supported the power of the medical profession over others in discourses, arguably. In the 1960s, warehousing of people with problems with mental health meant that drugs could be easily delivered. “Living better with dementia” in the community would’ve have been unheard of.

When Robin Williams took his own life, and who had been diagnosed with a dementia, immediately the potential for media explosion was commenced.

This subject combined two taboos – “dementia” and “suicide”.

Take for example this Daily Mail article entitled, “Robin Williams’ suicide was triggered by hallucinations from a devastating form of dementia”.

The article soon reveals,

“Court documents obtained by TMZ reveal that Williams, who was found hanging from a belt at his home in California last August, was suffering from dementia with Lewy bodies.”

Whether someone ‘suffers from dementia’ has been revisited numerous times, and I don’t intend to  cover it here.

But the starting point, I feel, is that the stigma surrounding dementia goes a long way to explaining why people who have received a diagnosis of dementia don’t want to tell people about the diagnosis: sometimes called “coming out” with the diagnosis, to reflect perhaps a secret that could be hidden.

In response to Williams’ death, in the blog “Humanist Voices”, “Mental Illness: Stigma, Silence, Suicide — or Support?” Audrey in September 2014 had the following to say:

“Mental illness need not define a person as it often has in the past, but we have a long way to go to truly help those in need. Over the centuries, we as a society have ostracized, ridiculed, imprisoned, institutionalized, over-drugged, shamed, blamed, stigmatized and forgotten those who struggle with diseases of the mind. Quite unlike the history of physical ailments — which has had a distinctly different and more promising trajectory. Today we like to think we have a more enlightened view of mental illness, but countless people still fear the stigma of “coming out” with their mental health “issues” to peers and colleagues. How many among us try to hide our own struggles or those of our family members?

In the last half century society has moved away from overcrowded and often abusive mental institutions or asylums to a more humane community-based mental health approach. However, neither public funding nor insurance plans have ever provided the necessary support and resources to make such programs very effective. In fact, the lack of adequate community mental health services has given rise to jails and prisons becoming warehouses for the mentally ill in recent years. Even Minnesota faces a shortage of providers and hospital beds for those with serious mental illness as a recent legislative roundtable in west-central Minnesota revealed. And since William’s (sic) death, local media outlets such as Minnesota 2020 and MPR have been shining a light on the growing need for more mental health services across the state.”

So here we have one argument – that stigma is exacerbated by people not wanting to talk about their dementia diagnoses (“under expression”). Or, in the alternative, people feel bombarded with negative memes about dementia, e.g. “suffering”, “horrific”, “tsunami” or “time bomb”, in the general media. In any case, it can easily be argued that freedom of expression is a right that needs defending now as much as ever; it is therefore important to argue, say, freedom of expression “is the cornerstone of democracy, a vital foundation for tolerant societies.”. As this Amnesty International blogpost goes onto say, “According to the Committee to Protect Journalists, 61 journalists were killed last year in direct reprisals for their work. The most dangerous country was, unsurprisingly, Syria. Just over a week into 2015, and the CPJ’s figure is already at five. The most dangerous country? France.”

But is the content of the media something we should take some notice of?

Yes – for a start the ADI Conference has language guidelines.

According to Miriam Bar-on (2000), in the USA, ” based on surveys of what children watch, the average child annually sees about 12 000 violent acts,5 14 000 sexual references and innuendos,6 and 20 000 advertisements.”

Television has the potential to generate both positive and negative effects. It turns out that an individual child’s developmental level is a critical factor in determining whether the medium will have positive or negative effects.  Current literature suggests that perhaps physicians can change and improve children’s television viewing habits, or even excessive television watching contributes to the increased incidence of childhood obesity?

And interpretation of language is not new.

According to the Stanford Encyclopaedia of Philosophy, “Hermeneutics” is defined as follows:-

“The term hermeneutics covers both the first order art and the second order theory of understanding and interpretation of linguistic and non-linguistic expressions. As a theory of interpretation, the hermeneutic tradition stretches all the way back to ancient Greek philosophy. In the course of the Middle Ages and the Renaissance, hermeneutics emerges as a crucial branch of Biblical studies. Later on, it comes to include the study of ancient and classic cultures.”

Kate Swaffer, Co-Chair of the Dementia Alliance International and living with a dementia, argued this recently in Dementia Journal in an outstanding paper.

“It is therefore imperative that we aspire to change views of and about people with dementia, and begin to include them in the research and conversations about them. [Ken] Clasper (2014) writes a blog about living with dementia, and said: ‘…we wish to raise awareness of dementia, is that we all live on hope, that we can in our own little way go a long way to remove the stigma which we hear of every day in dementia’.”

So this is a case of ameliorating under-expresssion of information, consistent with the notion that prejudice and discrimination arise from lack of information and/or ‘lack of changing your mind’ when presented with new information.

And Kate explains, why despite Voltaire, it is in fact a big deal to be offended,

 “Whilst, we may have changed, we are all there. Whilst we may in fact suffer, many of us are not sufferers, and find that term offensive. We no longer refer to people with physical or intellectual disabilities as retarded or as retards, as it is offensive to them, even though technically they [we] are retarded. I place myself in the disabled category, as I have many disabilities caused by the type of dementia I have. Technically, people with dementia are ‘demented’ too; however, most of us find that and other terms offensive, and have a right to stand up and speak out about it.”

I have seen with my own eyes how the medical profession culturally in an institutionalised way harbour anti-dementia memes like “demented” when talking with other doctors. I’ve been on ward rounds where the Consultant has turned to junior medical staff, with the person with advanced dementia waiting to be discharged after an operation, and said, “But don’t worry about him as he’s got dementia”.

We have furthermore to be extremely careful or vigilant that the global policy of “dementia friendly communities” does not promote a sense of ‘otherness’, defeating the prime objective of inclusive.

Swaffer (2014) warns:

“The determination by governments and Alzheimer’s societies and organizations around the world to promote dementia friendly communities and dementia champions still mostly supports the ‘about them, with them’ position, which has the potential to further stigmatize people with dementia. To date, only a few people with dementia have been included in the discussions, planning and decisions about what makes a community or organization dementia friendly.”

But there’s little doubt in my mind that dementia friendly communities is a valuable concept, even if the nosology isn’t quite right?

Danielle White from Alzheimer’s Australia NSW hopes that “understanding of the condition will turn into action”, a similar if not identical to the sentiment behind the UK’s “Dementia Friends” initiative.

She has said: “These figures show why it’s so important for us all to look at how we can create communities where people living with dementia are included, respected, valued, and supported to maintain a good quality of life.”

In a paper entitled, “Dementia Discourse: From Imposed Suffering to Knowing Other-Wise”. Gail J. Mitchell, Sherry L. Dupuis, and Pia C. Kontos, this intriguing diagram pops up on page 12 which I felt was a useful summary infogram about the ecosystem of a stigma.

otherness

Venance Dey has said that, “awareness about the disease was almost non-existent in Ghanaian communities hence the formation of the AG to raise awareness about dementia in local communities that would encourage government to build systems for all those affected to have access to quality care and support they needed.”

But we should care about the age at which stigma memes might get implanted.

Psychologist Dr Jess Baker has for example in Sydney’s west observed a group of Scouts watching DVDs about dementia.  The video forum is part of a UNSW-led project that aims to create a more dementia-friendly society by educating the next generation. Information gleaned from the children will be used to develop an online education program, designed to align with Australia’s education curriculum.

.“We know that children are more responsive than adults to anti-stigma education because their beliefs are not as firmly developed,” according to Dr Jess Baker.

But the impact of mass media and popular culture should not be underestimated. A group of 11–14 year olds interviewed for a British dementia study made repeated references to the “dementors” in the Harry Potter movie series – half-dead creatures that feed on happy thoughts and memories leaving their victims in a mindless state.

According to Wikipedia,

“Rowling, by her own account, created the dementors after a time in which she, in her own words, “was clinically depressed”. Dementors can therefore be viewed as a metaphor for depression.”

First problem – the confusion between depression and dementia. Indeed, some depression might get confused as dementia (or vice versa); but there is a co-morbidity between depression and dementia.

“Despite their attachment to human emotion, dementors seem to have difficulty distinguishing one human from another, as demonstrated by Barty Crouch Jr.’s escape from Azkaban, wherein they could detect no emotional difference between the younger Crouch and his mother.”

Having abnormal emotional responses can be a feature of the frontotemporal dementias. Indeed, Prof John Hodges from NeuRA and Prof Simon Baron-Cohen have both been very interested in how the neural circuitry involved in reading others’ minds might go awry in behavioural variant frontotemporal dementia.

“The dementors are “soulless creatures… among the foulest beings on Earth”: a phantom species who, as their name suggests, gradually deprive human minds of happiness and intelligence. They are the guards of the wizard prison, Azkaban, until after the return of antagonist Lord Voldemort.”

source Melissa (30 July 2007). “J.K. Rowling Web Chat Transcript – The Leaky Cauldron”. The-leaky-cauldron.org.

In popular culture, dementia is often portrayed as robbing people of their happiness.

“The presence of a dementor makes the surrounding atmosphere grow cold and dark, and the effects are cumulative with the number of dementors present. The culmination of their power is the ‘Dementor’s Kiss’, wherein the dementor latches its mouth onto a victim’s lips and consumes its soul or psyche, presumably to leave the victim in a vegetative state.”

And of course there are people like me who feel that your “Self” is not “robbed away from you” during dementia.

And finally,

“Beneath the cloak, dementors are eyeless, and the only feature of note is the perpetually indrawn breath, by which they consume the emotions and good memories of human beings, forcing the victim to relive its worst memories alone.”

Emotional regulation is affected quite late on in Alzheimer’s disease because of the usual time path of the condition, but the analogy of which memories are “robbed first” does not even correspond to actual life – in actual life, in the dementia of the Alzheimer’s type, recent memories go much earlier than later memories (the “so called temporal gradient”), and in fact worst memories might be emotionally charged such that they’re actually very vivid (a similar phenomenon happens with the effect of the stress hormone cortisol on memory formation.)

If we ‘go’ with the “rights based approach”, it’s pretty likely we’ll have to take ‘the full package’, which includes freedom of expression conversing with a person with dementia but also a freedom of expression of a person with dementia. Except…. there’s a catch here. If somebody’s acting badly with a person with dementia, it might be ‘freedom of expression’. If the person with dementia dares to say something back, it ends up being ‘agitation’, ‘aggression’ or ‘challenging behaviour’.

It essentially is a finely balanced deck of cards, where it just takes one thing to make the whole thing come crashing down.

cards

Reading

Bar-on, M.E. (2000) The effects of television on child health: implications and recommendations,  Arch Dis Child 2000;83:289-292 doi:10.1136/adc.83.4.289.

Swaffer, K. (2014) Dementia: Stigma, Language, and Dementia-friendly Dementia 2014 13: 709

Does a focus on choice not inequality fail people wanting to live better with dementia?

Shibley Rahman 0 Comments

fat pig

Equality means all things being equal. Critics of equality say it’s a race to the bottom, but I feel that anything which exacerbates inequality, such as marketisation of healthcare, will hamper the experience of a person living with dementia – in a market called a ‘consumer’.

But clearly inequality in service provision can clearly hamper choice: so the question comes for ‘consumer experience’, should one be concerned about any infrastructure which promotes inequality as regards living better with dementia? Categorically, the answer is “yes”. The Japanese has been promoting end-of-life care at home or at nursing homes, rather than at hospitals, which is expected to increase patients’ choices of places to get care. In 2006, a special fee schedule for clinics registered for providing planned home care was introduced, which highly values care in communities. One of the major difficulties is that almost all clinics in Japan are single-handed. Group practices and polyclinics are not so popular. Therefore, in order to provide 24 hour home care, clinics have to collaborate with other clinics and hospitals. This process is not so easy, and it is especially difficult to find other clinics providing the same level of home care in geographically small areas. One newspaper reported that around 30% of ‘home care support clinics’ had not provided end-of-life care in the community at all. In addition, inequality in the number of ‘home care support clinics’ among prefectures was reported in the newspaper.

Whilst the narrative appears to be pre-occupied by ‘consumer choice’, it is impossible to get away from inequality, and – with the lower the income – the less convincing the ‘choice’. This is important. If you look at the worldwide picture of dementia, it’s clear that inequality has a massive rôle.

Take for example Prince and colleagues (2012). They reported on a population-based cohort study of all people aged 65 years and older living in urban sites in Cuba, the Dominican Republic, and Venezuela, and rural and urban sites in Peru, Mexico, and China, with ascertainment of incident 10/66 and DSM-IV dementia 3-5 years after cohort inception. They found supportive evidence for the cognitive reserve hypothesis, showing that in middle-income countries as in high-income countries, education, literacy, verbal fluency, and motor sequencing confer substantial protection against the onset of dementia.

I feel that the notion of ‘choice’ has now cumulatively given consumerism a pedestal status in dementia discussions, when often this choice is either weak or absent altogether.  The idea of choice and competition, ideally suited to private sector ‘suppliers’ or ‘providers’, hides behind that the assumption that improved choice drives up quality (and possibly drives down cost). There is actually a weak evidence base for this, instead leading to the finding that few large suppliers tend towards a homogenised product at a higher profit margin. Certainly, the idea that this market competition drives up efficiency is virtually non-existent.  From this weak starting point, I see no reason to triangulate consumerism with care. I think it’s perfectly possible to articulate a narrative based on individuals following a diagnosis of dementia taking control of their lives (i.e. autonomy), and the aim of public policy should be try to address other key aspects which will affect this autonomy, such as other health, education, housing or employment. Unsurprisingly, therefore, I come from a ‘whole person’ aspect. It’s clear from a consistent stream of literature that pre-existing inequalities such as affluence or income or education can affect persons’ access to information.

Whatever one feels about choices ideologically, it is hard to escape quality of choices is in some way related to the quality of information. I feel our aim should be to reduce inequality through lack of information rather than to fixate people’s minds on ‘shopping around’.

Information can undoubtedly be useful. For example, the University of Wollongong has published a freely available booklet “Driving and dementia – a decision aid” (v3 2014). The decision tool is available for download as a hard copy and as an online version (see blogpost here).

“the aim of this booklet is to assist you in deciding when to stop driving after receiving a diagnosis of dementia . It is hoped that early planning for driving retirement from driving will avoid the need to stop suddenly”, Dr John Carmody, A/Prof Victoria Traynor, Prof Don Iverson and Cathie Andrew (OT).

Given that I feel the notion of choice can be bogus, I don’t think the emphasis on consumerism driving care is an appropriate one. This construct relies too heavily on a power imbalance between provider and recipient, and views social services and care as some sort of commodity like milk or sugar. But human relationships are hard to convert into a financial figure, and it is not fitting, I feel, to know the cost of everything and the value of nothing.

I think it is unsurprising that a properly resourced system where people’s relationships are maximised, say through the Senses Framework, will optimise the feeling of wellbeing in a person who has received a diagnosis of dementia, but this should be seen as a success of consumerism – rather, it should be more accurately be viewed as running in parallel with consumerism, if you are driven by the goal of maximising shareholder dividend.

But maximising shareholder dividend is not an ethic – it is a means to some sort of end.

Paul Krugman, for me, dealt with the problems of ‘consumerism’ in an excellent article for the “New York Times”:

“But something else struck me as I looked at Republican arguments against the board, which hinge on the notion that what we really need to do, as the House budget proposal put it, is to “make government health care programs more responsive to consumer choice.”

Here’s my question: How did it become normal, or for that matter even acceptable, to refer to medical patients as “consumers”? The relationship between patient and doctor used to be considered something special, almost sacred. Now politicians and supposed reformers talk about the act of receiving care as if it were no different from a commercial transaction, like buying a car — and their only complaint is that it isn’t commercial enough.”

Fundamentally, I feel that inequalities, not choice and consumerism, should be a focus of why some people with dementia aren’t living better. It is possible that consumerism improves health inequalities – but it is not at all probable, if we look at the evidence base? The consumerist exponents can pick numerous fruit from the commodification tree. When you focus the mind on spending, it focuses you on rationing – “not having a blank cheque book” at one end, but possibly somebody having insufficient money through a personal budget at another. The transfer of this rationing from the State to the consumer means of course that rationing of good care cannot be blamed on the provider, but the consumer or user of services.

But persons with dementia did not ever wish, I feel, to have the further label of ‘consumer’ on top their label which leads to the ‘prescribed disengagement’ articulated by Kate Swaffer.  And with the illusion of choice, there brings in the option of topping up choice, through an externality such as vouchers.   Relationships between people with dementia themselves are powerful, as you will soon learn from any person living with dementia involved in any peer internet group. While ‘experts’ are expected to share their knowledge, it is not as socially accepted for people without the expert status to lecture others. Social positioning theory looks out how people establish power relationships through speech, and how this can enhance a sense of Self and identity. This is of critical value, for example, in couples living with dementia, and it is that sort of approach which is valid in real life, whether or not anyone is ‘consuming’ services from somewhere.

The danger with treating services as commodities is that you treat the ‘end users’ of such services as commodities too. Ultimately what affects relationships is the quality of communication. The approach of  a clinician, not notorious for emotional intelligence, to assessment and management may not be culturally appropriate or relevant for diverse communities. But when working with such communities it is important to recognise the myriad differing understanding of wellbeing, health, illness, mental health and dementia, knowledge of service availability and pathways to access. These factors will vary widely and affect the way people interpret their situation and react to care and treatment. New initiatives can help a lot, but its value, here too, I feel can better explained by reducing inequality in healthcare rather than improving choice.

It might however be possible to improve a ‘consumer experience’, if you are paying for a care service, by reducing inequality. Elder abuse is any act that harms older people and that is carried out by someone they know and should be able to trust such as family or friends. Such harm can be financial, physical, sexual, emotional or psychological, including mistreatment or neglect. IIn 2009, Fraga and colleagues did a project on abuse of elderly in Europe (ABUEL) was conducted in seven cities (Stuttgart, Germany; Ancona, Italy; Kaunas, Lithuania, Stockholm, Sweden; Porto, Portugal; Granada, Spain; Athens, Greece) comprising 4467 individuals aged 60-84 years.

It had  already been known that there exists is a societal and community level dimension that adds information to individual variability in explaining country differences in elder abuse, highlighting underlying socioeconomic inequalities leading to such behaviour.  A three-year ECCV project has recently aimed to increase awareness of elder abuse in ethnic communities (2012-2015). ECCV has worked in partnership with ethnic and multicultural organisations and Senior Rights Victoria to deliver culturally appropriate messages about elder abuse, its prevention and pathways to support.

There can be a disparity between trainees wanting to work in rural and urban settings, and the solution to this is more to do with decreasing inequality than improving choice, even the upshot might be improved competition and choice in learning opportunities for trainees. The “Interprofessional Learning (IPL) program” at the Day Therapy Unit (DTU) in Geraldton, Australia, has facilitated the development of clinical competencies within a rural context for allied health students since January 2012. This program was developed through the ‘Allied Health Clinical Training Model’ project completed by Western Australia Country Health Service with funding from Health Workforce Australia for 2012-13. Feedback from students on completion of placements has been positive and has indicated an increased willingness to consider rural job opportunities. Additionally, four previous students have been recently employed in Geraldton.

It is difficult to deny the drive behind reducing inequalities, or facilitating personhood. But implanting care transactions by care providers in ‘person centred care’, because of the nature of the commercial market, itself imposes inequalities which can hamper a person living better with dementia. Any discussion of the ‘consumer experience’ must therefore co-exist with a critical look of whether inequalities have been minimised, why and how. And, if not, why not?

Marketing something as ‘person centred care’, where poorly motivated staff are on zero hour contracts with exclusivity clauses, cannot conceivably the all-embracing solution. Furthermore, there is a technical legal point, that as such a person cannot have a legal right to choice through a personal budget. On the other hand, a person can have a legal right to equality in many jurisdictions, where dementia is a protected characteristic under disability, and enshrined legal rights. See what I did there?

 

Reading

Fraga S, Lindert J, Barros H, Torres-González F, Ioannidi-Kapolou E, Melchiorre MG, Stankunas M, Soares JF. (2014) Elder abuse and socioeconomic inequalities: a multilevel study in 7 European countries. Prev Med,  Apr;61:42-7. doi: 10.1016/j.ypmed.2014.01.008. Epub 2014 Jan 15.

Prince M, Acosta D, Ferri CP, Guerra M, Huang Y, Llibre Rodriguez JJ, Salas A, Sosa AL, Williams JD, Dewey ME, Acosta I, Jotheeswaran AT, Liu Z. Dementia incidence and mortality in middle-income countries, and associations with indicators of cognitive reserve: a 10/66 Dementia Research Group population-based cohort study. Lancet. 2012 Jul 7;380(9836):50-8. doi: 10.1016/S0140-6736(12)60399-7. Epub 2012 May 23.

How will we know when the war against stigma in dementia is won? We won’t.

Shibley Rahman 0 Comments

stigma 2

How will we know when the war against stigma in dementia is won?

We won’t.

I once went to see Kay Redfield Jamison talk at the Society for Neurosciences conference in Miami in the late 1990s. She is both a professor of psychiatry and lives with from bipolar disorder.

She has previously gone on record to identify that stigma can prevent help-seeking behaviour, and this finding extrapolates across a number of conditions such as obesity or drug addiction.

“It was difficult to make the decision to be public about having a severe psychiatric illness…. but privacy and reticence can kill. The problem with mental illness is that so many who have it—especially those in a position to change public attitudes, such as doctors, lawyers, politicians, and military officers—are reluctant to risk talking about mental illness, or seeking help for it. They are understandably frightened about professional and personal reprisals.”

This “enacted stigma” is very dangerous.

Recently, at a meeting of the Mental Health Foundation, I was in a small roundtable discussion of ‘the visibility of dementia’.

One of the other delegates, himself in a wheelchair, argued that he was proud to be a wheelchair, but not proud of his dementia.

This observations raises a number of issues. Firstly, individuals react to disabilities in different ways. Secondly, it is not necessarily true that identifying a disability is empowering.

We were discussing this in relation to whether a rights-based approach, based on the legal rights which attach themselves to dementia being a disability, was an empowering phenomenon.

A right against being unfairly treated unlawfully constitutes ‘discrimination’, and use of the term discrimination orients unfair attitudes and actions of the perpetrators and society rather than on faults in the “service user” such a person with a mental health problem.

One of the lingering issues about ‘dementia friendly communities’ is how one recognises a person in the community to be friendly to; or maybe this is genuinely not the point, in that communities should be friendly to people whether they are ‘secret shoppers’ or not.

Prof John Ashton in discussing the recent devolution of health and care services in Manchester alluded to a whole ecosystem of services needing to be devolved including financial services. In the context of ‘integrated health’, it is now known that wellbeing is critically dependent on environment such as housing or transport.

Erving Goffman in his seminal book on ‘Stigma’ (1963) calls stigma ‘a trait which is deeply discrediting’.

He refers to the visibility of stigma:

“Some signs carrying social information, being present, first of all, for other reasons, have only an overlay of informational function. There are stigma symbols that provide examples : the wrist markings which disclose that an individual has attempted suicide; the arm pock marks of drug addicts; the handcuffed wrists of convicts in transit;or black eyes when worn in public by females”

A person experiencing a delayed discharge (perjoratively called a ‘bed blocker’) living with dementia may not visibly be living with dementia. There will not a label on his or her forehead saying ‘I live with dementia’ (but there have been initiatives where patients with dementia are identified in hospital to aim to improve their patient experience and outcomes).

Likewise, a person with the HIV positive serological status may not visibly have visible stigmata of disease.

And yet these are the people singled out by Katie Hopkins (dementia) and Nigel Farage (HIV).

But Hopkins language has maximum impact:

It, arguably, plays on a ‘perceived dangerousness’ of that person to society, in the same way that Farage’s allusion is to a person with HIV unfairly using up scarce resources.

This ‘perceived dangerousness’ phenomenon is common in stigma situations. Take for example people’s reactions to someone shuffling along the street – who then gets attached to the label “the stereotypical ‘chronic psychiatric patient’”. Even though the crowd do not know the specific label, the patient is avoided and socially rejected.

It is worth examining in ourselves what degree of offense we all tolerate. It is not uncommon for me to attend lectures from Professors specialising in stigma who use words like ‘dementia sufferers’ referring to people who are actually living well with dementia.

David Steele raises some perceptive issues here in a previous article in the Guardian:

“Even children’s television seems to have gotten in on the act. One study in the British Journal of Psychiatry found that out of a sample of one week of children’s television, 59 out of 128 programmes contained one or more references to mental illness. Terms like “crazy”, “mad” and “losing your mind” were commonly used to denote losing control. Six characters were identified as being consistently portrayed as mentally ill. These characters were almost totally devoid of positive characteristics. I’m not sure if one of these was SpongeBob Squarepants. Why would a porifera even need trousers? Some sort of body dysmorphia ?

The sign “You don’t have to be crazy to work here but it helps” has become so common that it’s a cliché. People describing themselves as “a bit mad” usually mean that they’ve worn a sparkly hat at some point. Terms like mentalist, psycho, bonkers, insane and barking are thrown around like loose pennies in a conversational washing machine. Look at Terry, the mentalist. He’s bonkers. He’s so drunk he’s gone outside to punch the thunder for annoying the moon. Mad!”

Two years ago, Thorpe Park was accused of ‘stigmatising mental illness’ for naming a Halloween attraction “The Asylum”. Mental health advocates warned that having actors chasing people around ‘The Asylum’ pretending to be patients reinforces stigma around mental illness, and yet a Thorpe Park spokeswoman said that the attraction is not meant to be offensive nor ‘a realistic portrayal’ of mental ill health.

In 2012, the Alzheimer’s Disease International ran a campaign on tackling the perceived stigma of people with dementia, citing that a societal shift was needed to change opinions, such that people with dementia felt included.

They warned that,

“Stigma could be a major barrier to finding solutions for the problems related to Alzheimer’s disease and other dementias, including low rates of diagnosis and service utilisation. Therefore, it is essential to take action to dispel lingering myths about dementia to reduce stigma.”

But they recommended that,

“Give people with dementia a voice and let them speak about their experiences in public. They have proved to be powerful spokespeople for Alzheimer associations.”

I don’t think that people living with dementia should say nothing on the one hand, but on the other hand I don’t feel we need to fuel this with yet further publicity (like this blogpost).

But I feel people who perpetuate stigma over health, including dementia, are dangerous people.

And when will we know the ‘war against stigma’ is won (as dementia likes its battle analogies?)

A world without Katie Hopkins or Nigel Farage?

No idea.

Rights-based approaches in dementia. What are they good for?

Shibley Rahman 0 Comments

I will be responding to a Mental Health Foundation report on disability and dementia on Thursday.

“Rights based approaches” hardly trips off the tongue, and it took me considerable time to get to the bottom of what it’s all about. I was, to be honest, a bit afraid whether it was “the next big thing” in dementia policy, like “dementia friendly communities”. My concern was that it is a bandwagon, which, like the “no decision about me without me”, is prone to becoming a slogan without people looking behind the sentiment. But on closer examination, I feel “rights based approaches”, which I will call “RBA” so it sounds less threatening, has much to offer.

For a start, it has a lot to offer people living with dementia themselves – this includes all individuals who’ve received a diagnosis of dementia, and living at all ‘stages’ of their dementia. I feel the danger with “dementia friendly communities”, apart from the basic problems of how you define ‘friendly’ for a start (is it the same as capable? inclusive? accessible?) is that it offers more to people other than people with dementia than the people with dementia themselves. However, this policy was clearly meant to be for the benefit of the person living with dementia, such as more ‘friendly’ design, transport or housing.

But human rights, such as right to be free from degrading treatment, apply to everyone. They are inalienable; they apply to everyone. There are problems in thinking that all human rights are legal ones. It’s often cited that the offense caused by Apartheid is a moral one and pre-existed legislation. The general issue is that rights do not need to be in law to be meaningful (but it certainly helps.) The fact that they are inalienable is an extremely powerful concept – that they do not erode as the dementia progresses. The way dementia is often framed in the media and even by professionals is an insidious “dehumanising” process.

And the United Nations are deadly serious about the implementation of human rights, to the extent it has produced a Convention on the Rights of People with Disabilities. It’s also given guidance on how corporates should behave responsibly to observe human rights. The Convention on the Rights of People with Disabilities, I feel, is valuable as it adds serious teeth to what might have seemed peripheral issues, such as the democratic representation of people with disabilities.

Its ethos about everyone being equal in front of the law has serious implications for our own Mental Capacity Act. And I don’t think it is a bad thing that we are forced to think about our understanding of capacity – and what ‘happens’ when capacity is ‘lost’ in a seemingly all or nothing matter. A law is only as useful as its enforceability, but a sense of ‘rights conciousness’ gives people with dementia a sense of entitlement to standards. Of course, it is counterproductive if people use this law to be compliant to prevent complaints, rather than use this law to acknowledge certain people have legitimate legal expectations.

I feel, particularly, that a RBA offers a mechanism to campaign as a social movement. People with dementia, numbering 47 million in the world, deserve to be treated as equals, not just to be ‘friendly to’. People with dementia can campaign for minimum standards in things which affect their health through constructs such as the Convention for People with Disabilities, such as in housing, education or democracy; in the same away as activism on public health brought about basic changes in sanitation in global medicine.

This should be of course a focus for public health anyway, but it is all too easy for Big Charity and governments to collude in a narrative on prevention and cure, squeezing out living well. But this prevention script is not innocuous either. A healthy lifestyle does not necessarily mean another dependency on cholesterol or blood pressure lowering drugs.

And the “pre-dementia” notion, often advocated for by Big Charity, potentially can make patients out of us all. The effect is we are all living in fear, some more than others, and ‘it’s our fault’ if we don’t do something to stop getting dementia (the “personal responsibility” narrative). A disability requires a long-lasting substantial impairment, and access to benefits on the basis of disability are de-incentivised by any simultaneous wish to ‘live well’. We get into slippery territory if we can recognise all people with ‘genetic handicaps’ over meticulous examination of their DNA through ‘Big Data’ innovations. Some people find the label ‘disability’ empowering, some disempowering, looking at the literature from all long term conditions. I personally find recognition of my physical disability ’empowering’, but each to their own?

And living better with dementia is important as it supports a move away from deficits and illness. Health is not just about an absence of illness, and people on receiving a diagnosis of dementia are entitled to lead lives in recovery akin to receipt of a diagnosis of schizophrenia. If a social movement such as ‘dementia activism’ gains traction, it’s perfectly possible this will provide further leverage, such as not seeing people with later stages of dementia being parked in residential homes. For decades, it was too easy for many individuals to be given inappropriate antipsychotic medications institutionalised like some sort of police state.

I think language is critical – and that’s why this from the Alzheimer’s Society back in 2009 did not impress me much.

PR

Victimhood is sometimes unwittingly exacerbated by Big Charity – which is why we all need to be vigilant. A RBA may help to reset the compass on this one.

In summary, I feel RBA are complementary to dementia friendly communities, and will make the weather. I think they are less reliant on codification by governments or governmental bodies, and can be ‘enforced’ in a legalistic manner, but the crucial strength in them is their ability to command a social movement for better dementia care and respect for people with dementia and carers.

Music – the gift horse that keeps on giving. My talk in Brighton on March 20th 2015.

Shibley Rahman 0 Comments

I will give a talk on the significance of music for living well with dementia.

The details of this talk are as follows.

Church

 

The location of this talk is the St George’s Hall, St George’s Road, Brighton, as stated on this poster.

I intend to give an overview of where we’re at in terms of our understanding of how the brain works in people living with dementia, and how music can ‘subvert’ this wiring to produce dramatic effects in people with dementia.

I would be pleased to see you there. I hope you can make it.

Details are available from @lucyjmarsters.

 

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Music and dementia – where to begin?

Sometimes we’re given a gift – and our tendency is to overanalyse it, not appreciating it’s a gift.

A gift horse is a horse that was a gift, quite simply.

When given a horse, it’s apparently bad manners to inspect the horse’s mouth to see if it has bad teeth.

Nature has given us a gift where music can have amazing effects for people having cognitive problems as part of their dementia.

We are only in our infancy of understanding how the human brain works, and it’s taken us a lot of time to get this far.

Also, we are only just beginning to work out why music is such a powerful stimulus for all of us.

But music and dementia go to the heart of what sort of NHS we want.

The NHS currently is set up as a fragmented, ‘illness service’.

It should be promoting wellbeing instead: in other words, quality of life.

A cure for dementia is laudable for 2025 – and so is a better consensus on how to prevent the dementias.

But world dementia policy including our own is rapidly spiralling into a catastrophic pit, of actually ignoring people currently trying to live well with dementia.

When I tweeted that I was to give a talk on music and dementia, somebody replied, “ the power of music in dementia care is priceless”.

And it’s easy to get bogged down in the epidemiological figures from celebrity epidemiologists, but what do we do about music?

It might be hyperbolic to see music as an ‘intervention’. It is after all part of our day to day life.

Many of us can relate to the sentiment, “This music reminds me of my childhood and my family”.

The starting point is that music is a cultural universal phenomenon.

Understanding of the cognitive and neurological bases for music affective dimensions of music have received much attention, the processing has advanced greatly in recent decades.

Processing of music in the brain uses a combination of cognitive and emotional processes.

Why is music so pleasurable?

It is simply a sequence of tones. Yet music has been present in every known human culture as far back as history dates.

The mystery lies in the fact that there are no direct functional similarities between music and other pleasure-producing stimuli: and it has no clearly established biological value (as compared to other rewards such as food, love, and sex).

It has no tangible basis (as compared to pharmacological drugs and monetary rewards).

It has no known addictive properties for the vast majority (as, for example, compared to gambling and nicotine and smoking cigarettes).

Despite this, music is consistently ranked amongst the top ten things that individuals find highly pleasurable, and it plays a ubiquitous and important role in most people’s lives.

At the heart of it all is the notion that the whole is significantly more than its constituent parts.

A piece of music makes much more sense than the exact combination of individual notes.

In his latest book, “Musicophilia,” Oliver Sacks has focused successfully on people who have developed remarkable musical powers — so called, “musical misalignments” that affect their professional and daily lives.

A composer of atonal music starts having musical hallucinations that are “tonal” and “corny”: irritating Christmas songs and lullabies that play endlessly in his head.

A “musical savant” with a “phonographic” memory learns the melodies to hundreds of operas, as well as what every instrument plays and what every voice sings.

So if music is so good for people with dementia, why don’t we have more of it?

We have a very medical model of doing things.

Big Pharma always calls the tunes, pardon the pun.

I think this is, in part, where we have gone wrong in English policy.

You see it everywhere in the language – the search for a ‘cure’ for dementia is relentless, such that anything less is a failure.

This is clearly setting policy up to fail.

Earlier this month, I was harangued by my hairdresser as to why people should want to receive a diagnosis of dementia.

He explained: “well, there’s no treatment for it, is there?”

Indeed, the current guidance from the National Institute for Clinical Excellence (NiCE) is that the cholinesterase inhibitors, used to treat symptoms of difficulties in learning and memory, have a limited time window for many.

Only a few months – and even then the disease process is not reversed.

The current main NICE guidelines, now nearly a decade old, on the management of dementia offered few evidence-based recommendations on psychosocial approaches because there were few good studies.

It therefore seems utterly reasonable for policy to aspire people living with dementia to lead a better quality of life.

Wellbeing in dementia is important, as the seminal work of Prof Sube Banerjee, Chair of Dementia, has shown in his work.

Positive wellbeing (i.e. happiness and life satisfaction) in later life is thought to be derived from being involved in activities that are personally meaningful and valued, especially informal social activities (Adams, Leibbrandt, & Moon, 2011).

Take for example this particular “YouTube” hit.

An African-American man in his 90s named Henry, is said to ‘lie dormant’ but is given an iPod loaded with the gospel music he grew up with.

The effect seems almost impossible and literally miraculous: Within seconds his eyes are open, he’s singing and humming along, and he’s fully present in the room, talking to the people around him.

This iPod has massively improved his quality of life, and the quality of life of those around him.

I say iPod, but I mean any mp3 player!

But we all have different musical capabilities.

Che Guevara, he tells us, was “rhythm deaf,” capable of dancing a mambo while an orchestra was playing a tango,

Research has in fact shown that your quality of life is improved when you improve the quality of life of others.

So why aren’t iPods available on the NHS?

Well, some believe that GPs should be able to prescribe an iPod for such individuals with dementia.

That’d be ‘social prescribing’ then.

Research from Nesta in 2014 by the innovation charity Nesta and the Innovation Unit suggests GPs across the country are increasingly keen on the “more than medicine” approach of social prescribing, which typically includes activities from dance classes to knitting groups and cookery clubs.

One of the challenges in caring for people with dementia is organising appropriate meaningful and stimulating activities.

Among 1,000 doctors surveyed, four out of five thought social prescriptions should be available from their surgeries, in particular exercise groups, help with healthy eating and groups providing emotional support.

Yet patient experience suggests the opportunities to benefit are limited. Nesta questioned 2,000 members of the public, with just 9% saying they had received a social prescription. More than half (55%) said they would like their GP to offer them.

And it is likely to be no less cost effective than a course of medication.

But we don’t have the research data to show this, as no one is researching it.

Blame the researchers – blame Big Charity – but blame anyone apart from me please!

The whole system is geared up in an unhealthy way the wrong way.

The aim is to ‘repair’ people with dementia, rather than to care for people with dementia.

The system disproportionately rewards clinicians for treating illness, whereas it should be geared up for encouraging people to lead happier, healthier lives.

The growing number of people with dementia, and the increasing cost of care, provides a major incentive to develop and test methods of supporting them in the community for longer.

But there is evidence that music has the ability to uniquely activate the brain.

Further evidence is now accumulating that music can activate pleasure and reward centres in the brain.

In residential homes, certain people with dementia can become increasingly frustrated, and communication problems play a large rôle here.

If unaddressed, such frustration can boil over into agitation or aggression.

And the good news we’re at last doing the research into all this.

For example, there’s now a project called “Music in Mind”, from the University of Manchester and Care UK, which has run in 123 residential homes for elderly people.

The aim is to find out if classical music can improve communication and interaction and reduce agitation for people in the UK living with dementia – estimated to number just over 850,000.

The quick fix solution is for a medic to implement the ‘chemical cosh’, but this brings a whole barrage of ethical questions.

How much better would it be, then, for a person to become happier with a mp3 player?

The most remarkable about this is how it seems to be working, even though neuroscientists can’t easily work?

Why do some people with dementia learn better after a short spell of Vivaldi’s “Four Seasons”?

One way to get behind this mystery is to learn lessons from other brain conditions, where the structure and function of the brain are affected.

Take for example stroke.

Oxygen can cut off blood supply to a part of the brain, meaning that you lose that part of the brain.

Bill was reported on the BBC website.

Bill, from west Berkshire, had been in hospital recently after having a stroke, but Jean, from an initiative called “Singing for the brain”, kept up the singing and said it has given them both a focus, even helping his slurred speech recover following the stroke.

And the description is quite remarkable.

“He is 82 and likes all the old time songs, but he also started singing some Beatles songs and songs from the Broadway shows and even some modern stuff as well.”

“He seemed to be able to slowly learn things again. I would take the song sheets home after the sessions and we would sing them at home. It enlivened him and he really enjoyed doing it.”

Evidence for the beneficial effects of singing in groups also comes from the ‘Singing for the Brain’ model, which was devised by the West Berkshire Branch of the Alzheimer’s Society and the Silver Song Club Project.

An evaluation of a three-session singing group demonstrated singing was an enjoyable activity for PWD and had the potential to enhance wellbeing and quality of life for them and their carers.

Specifically, “music therapy” worldwide is a psychological, social, behavioural and creative intervention in which trained therapists use music-making and words to support and enhance patients’ expression of feelings, their sense of self and their ability to connect and communicate with other people.

According to a critical review by Marshall and Hutchinson (2001) well-being and life satisfaction have increased among people with dementia who participate in different activities.

Studies have also shown that participation has decreased challenging behaviours such as agitation and aggression, improved and supported communication, improved quality of life, provided a way to express feelings, and improved self-esteem and self-respect.

Alzheimer’s disease is the most common type of dementia worldwide.

It is important, but not synonymous with all dementia.

Scientists are trying desperately hard to discover why it presents the way it does.

And that is – people find themselves forgetting more than the odd thing, find themselves quite lost in what used to be familiar environments.

You don’t have to be old for this to happen.

You have people in their late 30s to which this can happen, less frequently.

What goes wrong is a malfunction in a part of the brain near the ear, due to a build up of inappropriate substances.

But this malfunction occurs right bang in the brain circuitry involved in the formation of new memories.

Somehow, when we form new memories, these memories get shunted to somewhere else in the brain.

And we’re not exactly sure where.

However, what we do know, is that people with Alzheimer’s disease can have remarkably good memories for events which happened a long time ago, even if they have real problems in remembering what they had for breakfast.

Ribot, a remarkable French neurologist, in French, in 1881, called this ’The new perishes before the old’.

And weirdly enough music is quite easy to recall.

One factor in the popularity of such an approach is that it works with early memories, which are often intact for people with dementia, thus drawing on the person’s preserved abilities, rather than
emphasising the person’s impairments.

However, its popularity has not led to a corresponding body of evidence on its effects.

The ubiquity of music in human culture is indicative of its ability to produce pleasure and reward value.

Anne Blood and Robert Zatorre at the Montreal Neurological Institute, McGill University, Montreal in Canada have done some truly remarkable work here, I feel.

Many people experience a particularly intense, euphoric response to music which, because of its frequent accompaniment by an autonomic or psychophysiological component.

These are sometimes described as “shivers-down-the-spine” or “chills”.

These chills are great to study as they represent a clear, discrete event and are often highly reproducible for a specific piece of music in a given individual.

Subjective reports chills are accompanied by changes in heart rate, and and breathing rate.

So there’s something going in the neural wiring of people here.

As intensity of these chills increased, cerebral blood flow increases and decreases were observed in brain regions thought to be involved in reward motivation, emotion, and arousal.

These include focal parts of the brain and brainstem, with long names, including the ventral striatum, midbrain, amygdala, orbitofrontal cortex, and ventral medial prefrontal cortex.

These brain structures are known to be active in response to other euphoria inducing stimuli, such as food, sex, and drugs of abuse.

“Singing for the Brain” is a service provided by Alzheimer’s Society which uses singing to bring people together in a friendly and stimulating social environment.

Singing is not only an enjoyable creative activity, it can also provide a way for people with dementia, along with their carers, to express themselves and socialise with others in a fun and supportive group.

Singing is one form of something called ‘triggering reminiscence’.

Reminiscence groups, run by professionals and volunteers, which use photographs, recordings and other objects to trigger personal memories are probably the most popular therapeutic approach to working with people with dementia.

So why does all this happen?

I reckon the key to all this is in a part of the brain very close to the one I studied in my PhD at Cambridge on dementia in the late 1990s.

That’s the subgenual prefrontal cortex part of the brain, close to your eye.

Ingrid Nieuwenhuisa and Atsuko Takashima from Berkeley California in 2011 proposed that the function of the subgenual vmPFC is to integrate information which is represented in separate parts of the limbic system (the hippocampus, the amygdala, and the ventral striatum).

I think that’s the place so crucial in the activation in musical memories.

Petr Janata had, in fact, brought this to life for me in a paper from 2009.

And it’s more or less where the subgenual prefrontal cortex is.

The medial prefrontal cortex is regarded as a hub of the brain that supports self-referential processes, including the integration of sensory information with self-knowledge and the retrieval of autobiographical information.

Janata cleverly used a form of brain imaging called “functional magnetic resonance imaging” and a novel procedure for eliciting autobiographical memories with excerpts of popular music dating to one’s extended childhood to test the hypothesis that music and autobiographical memories are integrated in the medial prefrontal cortex.

Janata’s results are indeed fascinating.

They suggested that the dorsal medial prefrontal cortex associates music and memories when we experience emotionally salient episodic memories that are triggered by familiar songs from our personal past.

But there’s a plethora of different types of dementia.

Possibly as many as a hundred.

Semantic dementia is loss of the knowing ‘why’ rather than the what, knowing that a bike is a form of a transport, rather than the fact you rode a bike on your sixth birthday.

Patients with semantic dementia have provided a unique opportunity to study the cognitive architecture of semantic memory.

Abnormally enhanced appreciation of music or “musicophilia,” reflected in increased listening to music, craving for music, and/or willingness to listen to music even at the expense of other daily life activities.

A patient reported by Boeve and Geda (2001) became infatuated with polka music several years after onset of semantic dementia at the age of 52.

Also, Hailstone and colleagues (2009) described the case of a musically untrained 56 year old woman with semantic dementia who became intensely interested in music, playing, and singing along to a small repertoire of recorded pop songs.

Phillip Fletcher, Laura Downey, Pirada Witoonpanich and Prof Jason Warren at the Dementia Research Centre, UCL Institute of Neurology, University College London, London, UK reported in 2013 that something quite remarkable about “musicophilia”.

That is, musicophilia was more commonly asso- ciated with the syndrome of SD (associated with focal anteromedial temporal lobe and inferior frontal lobe atrophy) than another type of dementia known as the behavioural variant of frontotemporal dementia.

The beauty about “administering” music to a person with dementia is that it offers a highly personalised approach.

It’s not like a drug, where it doesn’t matter what the background of the person was.

With an iPod, you can tailor the music playlist, according to the known preferences of a person with dementia.

And this is entirely in keeping with what many of us wish to see from the new Government.

A person-centred, rather than a patient-centred service.

One which cares, as well as repairs.

It’s furthermore deeply fascinating for those individuals who study the brain, like me, including cognitive neuroscientists and cognitive neurologists.

Perhaps the existence of distinctive brain knowledge systems for music suggests that music may have played a specific biological role in human evolution?

So many questions, and not enough answers.

But music works in ‘activating’ certain living with dementia.

It’s a curious phenomenon.

It’s a gift horse that something so practical could massively improve somebody’s quality of life.

Sometimes it’s best not to look a gifthorse in the mouth.

Dementia friendly communities and ‘the Big Society’ – my pledge for #NHSChangeDay

Shibley Rahman 0 Comments

If you trawl back ‘through the archives’, it is quite constructive to chart the origins of ‘the Big Society’. Often seen as the policy turkey which never flew, it was the idea that communities could produce measurable outcomes for the benefit of society through voluntary action.

The “Big Society” has had more policy relaunches than either David Cameron nor the Cabinet Policy would like to remember, but many feel it has never been officially laid to rest.

‘Dementia Friends’ saw a multi-million pound initiative, involving the Alzheimer’s Society, for providing information sessions to members of the public. It is in many ways an illustration of the Big Society; and in this particular case, ‘Dementia Friends’ aims to tackle ignorance and prejudice leading to stigma and discrimination. This is indeed a worthy cause.

I myself am a @DementiaFriends ‘champion’, and very proud of it.

“Dementia Friendly Communities” has been a policy construct which has been very popular amongst the Big Charities globally, including the Alzheimer’s Society and Alzheimer’s Australia. Like neoliberalism, globalism by definition knows no territorial bounds; and nor does this policy apparently.

David Willetts MP, often affectionately called “Two Brains” by both fans and political enemies, is known to be an intellectual power house of the Conservative Party. He is thought to have been the “brains” behind much of the private finance initiative thinking of the early 1980s in a policy document for the Social Market Foundation.

In 1994, he proposed a notion of ‘civic conservatism’. It is picked up here in an interview with Caroline Crampton, now of the New Statesman:

“He considers for a long moment, then says: “What does frustrate me is that, in the long years of opposition, it took a long time for the Conservative Party to get to grips with some of this stuff. I think we have now. If you look at the social action projects that the members of the new intake have done, their commitment to their constituencies, their understanding of the importance of the voluntary sector, we’ve made great progress. In politics, you have to be patient.” All the evidence suggests that Willetts is going to have to continue to be patient; there is no guarantee at this stage that his party will win a majority at the next general election, or that, even if it does, his highly intellectual approach to his brief will have delivered enough substantive change to justify his promotion ahead of others.”

The “dementia friendly communities” policy can be served up in whichever way you wish. You can argue it as a perfect vehicle to give the commercial market a slight ‘nudge’, so that ‘dementia friendly’ providers gain competitive advantage by being ‘dementia friendly’. This would benefit both customers and employers, conceivably. It makes sense of the motherhood and apple pie thinking behind providing ‘Dementia Friends’ sessions for the top FTSE100 countries, inter alia, in the current Dementia 2020 policy document (aka ‘The Prime Minister’s Dementia Vision’).

At the other policy end, it is impossible to argue against inclusivity and accessibility. It is impossible for someone like me who is a card-carrying evangelist for personhood to deny that relationships underlie what it is to be a person. Such relationships, often articulated in the hyper cerebral world of ‘relational ethics’, foster solidarity and justice as suggested here.

It is, however, politically interesting why the Big Society has been such a political turkey which never flew. One of the most toxic arguments against it was that it was in fact a cover for cuts. And, despite the Prime Minister’s hyperbolic claim that he wants the UK to be ‘the best place in the world to have dementia’, social care funding is on its knees. I indeed argued this as the King’s Fund when I was kindly asked to appear in their panel session.

on its knees

The rub is social care has not been ringfenced since 2010. It is quite impossible to consider the health and care systems to be divorced from one another, especially when you consider, for example, that cuts in social funding have been directly responsible for delayed discharges from acute hospital care into the community for NHS patients, including frail elderly people living with dementia. That’s what many of us mean by ‘breaking down silos’, for those of us with experience of acute medicine, albeit a long time ago.

“Dementia Friends”, although meritorious, poses a particular problem for people like me who are prone to conspiracy theories. It is, despite its good intention, an elaborate cover for cuts.

Whilst community action is undoubtedly a worthy policy construct for supporting people with all mental health issues, as indeed WISH some years argued, “Transforming lives – enhancing communities“, together with historic initiatives such as WHO ‘age-friendly cities‘, it is one approach. The other approach is to promote the autonomy, dignity and human rights of people living with dementia themselves.

This approach is firmly footed in equality rights and human rights, and in a way is a form of disability activism.  This is not altogether surprising, as I am physically disabled, and dementia is indeed referred to in the guidance for a qualifying condition regarding discrimination in the Equality Act (2010), legislated for by a previous government.

And you will have noticed one thing about a dystopic dementia friendly community, one in which the State is rolled back. Sure, for a dementia friendly community to work, it is perfectly possible to outsource social determinants of health including housing and transport. But likewise, it can be argued that a neoliberal concept of dementia friendly communities, as may or may not be promoted by Big Charity, does not particularly care about access to high quality specialist nursing (such as Admiral nurses) or access to high street justice (such as legal aid cuts and the recently legislated Legal Aid and Sentencing and Punishment of Offenders Act 2012).

But, looking on the bright side, promotion of individual rights is also very much at the heart of independent living (and de-institutionalisation which has been the scourge of mental health policy in England for many decades).

In particular, I should like to commend to you @DementiaBoy, Andy Tysoe, a dementia nurse specialist at the Countess of Chester Hospital, for his important work today for @NHSChangeDay.

So here’s my official NHS pledge: not to allow dementia friendly communities to be a cover for cuts, while supporting the overriding principles of inclusivity, accessibility, solidarity and justice, and “rolling back the State”, but to promote, simultaneously, legal enforceable rights of people with dementia in equality and human rights as legislated for currently in England.

Living better with dementia at home and “respite services”

Shibley Rahman 0 Comments

Dementia is not just about raging, but aging in place has emerged in international policy as a desirable societal image of growing old in a familiar environment. The majority of older adults prefer to continue to live in their current home and maintain their daily routines. Research has illuminated the ways in which living at home promotes a sense of personhood and “normality” in spite of multiple personal losses, age-related declines and chronic illness. The adverse consequences of relocation include stress, isolation, weight loss, depression, financial burden, and loss of personal possessions and personhood.

In particular, the number of persons with dementia who live at home for a longer period of time after diagnosis is increasing. There is a need for more knowledge about everyday life of persons with a dementia; particularly the lived perspective of persons who live alone. The wellbeing of people with dementia, living at home or in an institution, is influenced by several clinical variables, including cognitive deficits, behavioural and psychological disorders, degree of autonomy, and dementia staging. Analysis of cross-sectional data has, interestingly, revealed a lack of linear relationship between wellbeing and cognitive functioning for people with dementia living at home and in an institution. This observation is confirmed by the results of other cross-sectional studies.

The disappointing success of drug therapies in the dementias has, for many, underscored the need for disease management strategies that include non-pharmacological interventions and support for patients and their caregivers in daily life, especially in the home. Although, not much is known about what constitutes best clinical practice for  people with more advanced stages of dementia, most European countries’ policy is to try to keep people at home as long as possible, considering admission to a nursing home as a marker when the family is overwhelmed by the patient’s cognitive and functional impairment. But there are considerable jurisdictional differences, a reflection in part on the funding basis of health and social care in different countries. Notwithstanding, a primary goal of home care is to provide high-quality services at home, thus allowing people to age in place, educate individuals about living with their long term condition, and avoid or delay hospitalisations. The aim of home care is ultimately to provide community-based care based on individual choice and autonomy.

For such an approach to succeed, one has to have an accurate idea of what a person with a cognitive impairment can do as well as what he or she cannot do. Activities of daily living (ADL) comrpise an useful construct for working out whether an individual will be able to perform well at home. Retention of ADL performance is typically associated with personal, familial, and financial benefits, such as increased quality of life, decreased caregiver burden, and reduced care costs, as well as societal benefits such as a reduction in institutional rates. Basic ADL (B-ADL) is commonly defined as those most basic life skills constituting the ability to care for one’s self, which includes bathing, dressing, toileting, eating, and grooming. Instrumental ADL (I-ADL) refers to more complex life skills for managing family and home environment, which includes cooking, cleaning, and financial management.

In persons living well with dementia, residence at home depends on the size and the strength of the family networks but also on the availability of care services, which varies across countries and regions. In general, across many jurisdictions, two-thirds of people with dementia are cared by their families. In most cases, the best housing for people with dementia is their own home, close to the family and surrounded by the usual social environment because social environment is important for psychological balance in the elderly including people living with dementia. Here the existence of what is ‘around’ in the dementia friendly community becomes very relevant (e.g. how acccessible and inclusive are the built environments? how good is the local transport infrastructure? how good is health and care coordination in the locality?)

Dementia significantly alters family life, forcing caregivers to face important changes in their lives and usually coming to a progressive decline in physical and psychological state. Continuity of care, which involves health promotion, prevention, self management, disease control, treatment and disease palliation as applied to patients with dementia, requires interdisciplinary teams formed by professionals who provide distinct health and social services and ensure continuity of care with patient and family commitment.  Cognitive rehabilitation, introduced to improve cognitive decline, seems to improve, with varying degrees of success, daily living activities and the satisfaction of person with dementia (PwD), but this is most noticeable at an early stage of the disease. Health professionals should train or educate caregivers to improve their level of competence. As most patients with dementia reside in the community, any intervention designed for the home setting is especially advantageous.

In recent years, attention has turned to the possible role of physical exercise in the treatment of dementia, based on growing evidence of a link between exercise and cognition. Among persons with Alzheimer’s disease or other dementias, typically between 60 and 70 percent live at home where four out of five are cared for by family members. To illustrate, it has recently been mooted that a physical exercise intervention delivered by caregivers to home-dwelling patients with dementia is do-able, and associated with a trend for improved functional performance in this group of frail patients. Given the limited efficacy to date of pharmacotherapies for dementia, one can easily argue that further study of exercise intervention, in a variety of care setting, is warranted. Such interventions could result in improved quality of life for the person with dementia, reduce the physical and emotional burden on their informal carers, and reduce the costs to the community associated with community support and residential care.

Little is known about the consequences for the PwD of the quality of care provided by family members. But we do happen to know there is a vast army of unpaid family caregivers supporting people living with dementia, without whom the care and support structures would implode? Is care that is considered to be of high quality actually beneficial to the PwD, and if so, in what ways? Because the caregiver role is usually unanticipated, learning to become a caregiver typically occurs ‘on the job’. As a result of lack of preparation, caregivers adopt a variety of informal caregiving styles, some of which may be less than optimal or even harmful.

Physicians and other health care professionals, assisted living providers, policy makers, investors, consumers, and advocates wish to understand the impact these various processes and structures have on length of stay and ability to “age in place” in assisted living settings. Over 70% of American seniors live in private homes, which is where many prefer to be and stay. Older people fear loss of independence more than death, and independence is a major factor in quality of life in persons with dementia. Assisted living (AL) is an important and growing option in various nation’s long-term care system; indeed there is what some have articulated as a “long term conditions care revolution”. Due to differences, perhaps, in the philosophy of care among AL providers, there is considerable variation from one assisted living residence to another in structure, process (e.g. staffing ratio and nursing hours), type (e.g. specialised and nonspecialised care), and size of setting.

In research, more focus has been put on the situation of people with dementia who live with a spouse than those living alone. As the care needs of those living with a spouse becomes manifest, they are more likely to get around the clock support and the help needed in order to maintain a structured everyday life. Spousal carers play an important role for the person with dementia, and they contribute with household tasks as well as with the basics of survival. The spouse provides important support and care in the management of everyday life. Spouses especially, have reported feelings of depression and social isolation during the disease process. The feeling of isolation can occur due to reduced possibilities of talking to the person with dementia on the same premises as earlier on. Informal caregivers can feel that they are obliged to provide care, even if this is of their own free will, and be disappointed because this help can be taken for granted by the health care system. Research indicates that people with dementia who have a manifest care need and who live alone are more vulnerable than those who live with a spouse. They also live in danger of not managing their hygiene, not dressing properly, and even leaving their own home in search of a ‘home’.

In the UK, national guidelines from NICE and SCIE and the recent National Dementia Strategy both propose a systematic approach to the long-term support of people with dementia in the community,to correct the consistent deficits in care identified by a range of organisations. Home healthcare is proven to deliver better outcomes for patients, yield lower costs and reduce admissions to hospital. Home-based models of care are especially effective for patients with multiple diagnoses and co-morbidities with a high risk of hospitalisation. Today, 25% of all inpatients have a diagnosis of dementia although usually this is not the reason they come into hospital. It is widely accepted that many of these admissions could be prevented if patients and their carers were better supported at home. The challenge is to ensure that any new service model gets to the heart of the unmet needs.

It has been concluded that to implement effective service delivery, the experience of caregivers needs to be better understood. Carer service choices are affected by a complex array of other factors. These include individual personality traits – carers, for example, have varying levels of tolerance for their situations and the emotional, physical and financial costs of caring.

Respite services are part of social policy intended to relief the burden of care and to support caregivers’ coping strategies. Previous studies have pointed to the importance for caregivers to have private time and space, have highlighted that respite allows caregivers to re-assume a sense of their original lives. However, their precise effectiveness remains somewhat unclear and gender inequality in their provision has been observed in some quarters.

 

Respite

Conceptually, respite can be defined as: “A pause, a temporary cessation, or an interval of rest.”

For the wellbeing of people with dementia living at home, social care groups can be a crucial service. They also give the carer an opportunity to get some respite. Social care groups are therefore an important social activity for those living with dementia in the community. But not only does the availability of these social groups have to be recognised; the well-being and social experience gained through these groups also has to be analysed.

Services such as respite, either in the PwD’s home, in a day care centre or in a residential facility, can reduce this burden, easing-albeit temporarily-carers’ physical and emotional workload. The general impression is that respite services are under used, with only 30% of carers of PwD reporting having used a respite service even where referral has been made and services are readily accessible. It is somewhat surprising that the actual usage of formal respite services by carers of persons with dementia has been repeatedly shown to be relatively low. Possible conclusions here are that if respite services are under-utilised, then they may not be satisfying carer needs as identified above or there are negative connotations associated with its use.

However, debate by key researchers in this area has determined that respite has a dual conceptualisation. Respite can be seen both as an ‘outcome’ or as a ‘service’. Respite services may be delivered informally by family and friends or it may entail the use of a formal service. Formal respite services encompass different types of services, which range from in-home, adult day care centres, residential aged care facilities to hospitals. The type is determined by the needs of the carer and the person with dementia and the availability of services in the locality.

End of life with dementia in a residential care setting: the need for openness

Shibley Rahman 0 Comments

Certain conversations in healthcare, or in life generally, are difficult. Death has come to be an event I can expect again myself, personally, having had a cardiac arrest myself in 2007. From that time, I believe that anything can happen at any time. An unfortunate conclusion I drew from my time in medicine was that nasty things happened to nice people.

Receiving a formal diagnosis of dementia, as Richard Taylor, living with dementia, says, does not bring you any closer to the day when you would have died.

The change in emphasis to ‘living well with dementia’ is partly to get round the notion of preparing for death. Likewise, residential care settings can be unappealing for some, taking on the aura of a departure lounge for the journey ending ultimately in death. Dementia poses particular issues for end of life planning, and the general impression in policy that these issues have been generally under-addressed thus far.

The recently published ‘Prime Minister Dementia Vision 2020‘ even included a section on it.

end of life

We know that dementia is a progressive condition, but it is not always easy for care staff and family carers to tell when the end of life is approaching.  A lack of understanding about dementia has been identified as a barrier to providing excellent end-of-life care for people with dementia.  You can of course attempt to do something about this, as indeed the recent Government initiatives have tried through workforce training initiatives, and giving information sessions for the general public through ‘Dementia Friends’. Specifically, there is also a lack of research on the training of care staff to recognise and respond to the need for palliative care. the use of comfort. This means that people with dementia sometimes do not receive the end of life care they would have ideally wanted.

The waiting for death component as an inevitability is bound to cause stress, but it is hoped that this inevitability of death will not deter individuals living with dementia from trying to lead lives post diagnosis. Often, people who have received a diagnosis of dementia find themselves totally unsupported. The natural course of the dementias can often be rather protracted and all too unpredictable, with progressive physical and cognitive losses typically over many months and years.  The nature of disease progression makes death at home relatively rare, and death in a specialist palliative care institution or hospice particularly rare.

The number of people living and dying with dementia is increasing.  The proportion of people with dementia will increase rapidly during the coming decades, and end-of-life practices in dementia care concern a significant number of old people and care professionals worldwide. Person centred approaches to dementia care assumes that people with dementia can actively participate in decisions about their lives, and this is generally consistent with what policy is trying to aim for folllowing diagnosis: a person-centred approach.

It is a generally accepted belief that people wish to die peacefully. Nevertheless, literature on ‘dying peacefully’ is rather limited and a bit noncommittal. The concept of ‘dying peacefully’ is broad, and it is often referred to as ‘tranquillity’, which may be connected to various aspects of emotional and spiritual well-being, such as feeling close to loved ones and feeling deep inner harmony.  Providing quality end-of-life care for individuals in residential care settings with dementia is a growing concern.

The statistics are actually quite staggering. In some countries, one-third to one-half of people with dementia live in residential or nursing homes. Three-quarters (76%) of all deaths occur in hospitals in Japan, probably the highest proportion in the world. In contrast, only 4% occur in nursing homes. But this generally is not that representative. Across Europe, most people die at an older age, which makes listening to their preferences regarding care, treatment and place of care and death especially important. A shift from hospital to care home deaths has been observed in Belgium and the Netherlands from 1998 to 2007, especially for patients with dementia.  Dying is part of care home life, and an important aspect of the overall quality of care provided. Here at home, both service provision and research tend to consider care homes as unique environments for the elderly. We do not know whether individuals with young onset dementia feel comfortable being in residential care settings with much older inhabitants; it would be dangerous to make assumptions here as elsewhere in policy.

Dying is not an unexpected outcome following a move into a care home, although often not acknowledged at the time of entry.   In the UK, the generic term ‘care home’ encompasses the provision of two types of care: nursing care and/or personal care.  Care homes for older adults are an important setting for end-of-life care provision. In the UK there are an estimated 15,700 care homes providing nursing care and/or personal care to more than 400,000 older people with a range of different needs in England and Wales. In fact, the majority of deaths of people with dementia occur in institutional settings such as care homes and hospitals, where unmet needs and concerns about care quality appear most pervasive.

Residential and nursing care homes, along with other long-term care settings have increasingly become places where people spend the final stages of their lives.  Care homes are the place of abode until their death for many older people, and how older people die in this care setting raises particular challenges.  An understanding of where people die is essential to develop health policies aimed at improving end of life care. In addition, place of death can be an important indicator of the quality of end of life care. National policy is clear that people should receive good end-of-life care irrespective of the condition with which they die, yet evidence suggests that people with dementia and their families receive poor-quality care in the final stages of their lives.

The place of death has also been recommended as a quality indicator of palliative care; in the UK death in the usual place of residence (which may be a care home) is a “key performance indicator” for those providing end of life care.  However, remaining in a familiar care environment is not always possible, and end-of-life care transitions, particularly transfers from long-term care facilities to hospitals, are common in this patient group.

In health and social care, the palliative care speciality has an acknowledged expertise in the management of dying across all ages. The term ‘palliative care’ is often used to describe care for people who are approaching the end of life. The World Health Organisation (WHO) defines palliative care as:

‘…an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.’

For those who are living at home or in care homes, definitions of end-of-life care are often imprecise, and it is unclear whether generalist palliative care frameworks address the needs of people with dementia.  In England, despite recent initiatives to improve this population’s access to palliative care services, the experience of the older person is largely unknown. The “Gold Standards Framework in Care Homes” was a system-based organisational approach, developed in 2004, to optimise the end-of-life care provided by generalists within a care home context. It is argued that failure to recognise dementia as a terminal condition may preclude access to palliative care. Reported problems include under-diagnosis and poor treatment of pain, painful and unnecessary investigations, and inappropriate use of aggressive treatments.

There is still relatively little research on the provision of specialist palliative care support and the integration of services for people living and dying in care homes.  However, there is no single universally agreed definition of end of life care.  In some contexts it is used to describe the care given in the last few months of a person’s life or when their death is no longer unexpected, whereas in others it refers to the final few hours of life or even death itself.

According to the General Medical Council (GMC), the regulator of doctors, people are approaching the end of their life when they are likely to die within 12 months.

End of life care and dementia care are areas of growing prominence in health and social care policy, and there have been a number of government initiatives in England aimed at improving both end of life care and support for people with dementia. Professional and policy guidance on care for people with dementia nearing the end of life do indeed emphasise the importance of advance care planning, co-ordinated working between health and social care, and the adaptation of palliative care frameworks and tools for people with long term conditions. Reviews of evidence to date have drawn heavily on evidence from settings where there is access to medical and specialist palliative care services for this population. Generalist palliative care frameworks may increase awareness of the issues for people with dementia.

Enabling people to make genuine choices about the care they receive towards the end of life is a well recognised value in palliative care. Despite some encouraging trends from The Netherlands and the U.S. regarding improved symptom management in dementia, improvement of end-of-life care for dementia can be slow to advance. Thee provision of high-quality end-of-life care for nursing home residents with dementia is essential. However, the literature reports numerous shortcomings in the end-of-life care for dementia, psychotropic drugs and poor decision-making in the last month of life of nursing home residents with dementia.

As the dementia time course nears its end, a number of treatment decisions may be considered including the use of resuscitation, hospitalisation, artificial nutrition and hydration, antibiotics, diagnostic tests, and analgesics.  The universal goal of care for advanced dementia is to maximise comfort and treatments and interventions that will address this must be a priority. Determining pain and discomfort in persons with dementia generally presents a challenge, yet every effort should be made to determine the possible cause of distress (e.g., position, incontinence, pain).  Experts generally agree that in end-of-life care, the emphasis should be on comfort, pain and other symptom control, continuity of care, and a familiar living environment with familiar people. Pain and shortness of breath are the most prevalent symptoms at some point in the process of dementia, with a peak when death approaches. Symptom control is an important factor in maintaining or improving quality of life in end-of-life care. So far, treatment has been mostly empirical or based on general palliative care guidelines, which are not tailored to dementia.

In dementia, hospitalisation of people nearing the end of their lives can have a profound detrimental impact, with patients experiencing problems such as pressure sores, worsening of behavioural problems, and increased confusion. Reducing the use of hospital-based care in advanced dementia has also potential economic benefits. Transferred residents are indeed at worse health; higher risk of functional decline and mortality and many are at higher risk of delirium, anorexia, incontinence and falls. High rates of burdensome transitions are also related to other indicators of poor end-of-life care, such as tube feeding which may result in aspiration pneumonia, intensive care unit admissions, decubitus ulcer and late hospice enrolment. Burdensome hospital transitions of nursing home residents with dementia and stays in intensive care units are not unusual.

Good quality palliative care in care homes, rather, is reflected by a number of markers. These include a plan of action for end-of-life care, the establishment of mechanisms to discuss and record the preferences of residents approaching end of life, ongoing review of a resident’s need for end-of-life care, and access to staff training. Investment in training and facilitation for care home staff in end of life care has demonstrated the potential and value of structured approaches that encourage advance care planning, reduce unplanned admissions to hospital and increase staff confidence in their ability to provide end of life care.  The knowledge, experience and perspectives of care home managers and staff and older people residing in care homes and their family carers has yet to be fully integrated into the initiatives.

There are barriers to appropriate use of palliative care for persons with advanced dementia including nursing home residents. Too often, death is looked upon as a medical failure instead of as a part of life. Family members may not perceive dementia as a terminal illness, perhaps due to its protracted and yet unpredictable course. There is a further difficulty in recognising “possible dying” and identified triggers that can stimulate end-of-life care discussions, such as health status decline of older adults.  Lack of knowledge regarding the person with dementia’s wishes is also likely. However, family carers tend to wish to express strong personal needs during this period: they appear to want frequent contact with staff, they seek also empathy, reassurance, understanding, guidance and communication. Carers particularly feel validated when values and beliefs were shared by professionals and fear, anger and guilt when they were not.

As people with dementia gradually lose their ability to make informed decision themselves, family carers will play a more prominent role in making decisions about medical treatment and care. To enable the provision of appropriate care for people with dementia who are incapable of decision-making themselves, family carers should be aware of the medical status of their relative. Good communication with staff is highly valued by family carers, but, overall, staff and family members may find it difficult to openly discuss death and dying, and staff may not feel confident answering specific questions about end-of-life care. Making treatment decisions on behalf of another person inevitably places an emotional burden on family carers, but care staff can help by informing them about what is happening and what to expect. Poor communication about nursing homes is a barrier to making difficult choices about care for their loved ones with advanced dementia, including resuscitation, hospital transfer, feeding options, and treatment of infection.

People with dementia may be willing and able to discuss preferences even when they are no longer considered to have the capacity to make advance decisions in their legal form. Older people may wish to plan ahead, so that if in future they cannot make decisions, their wishes about their care will be known; this is especially relevant in dementia, where patients experience an extended period of mental incapacity but may retain physical health. More recently the broader concept of advance care planning (ACP), a multistage process whereby a patient and their carers achieve a shared understanding of their goals and preferences for future care has been introduced.  ACP is a way to improve the quality of end-of-life care and to provide person-centred care by focusing on individual preferences. ACP is especially important for people with dementia, as this disease is characterised by the gradual loss of cognitive abilities. Therefore, ACP discussions with people with dementia should start when they still have sufficient communicative and cognitive abilities to express personal preferences.  Where wishes are written, relatives report lower levels of emotional distress at the end of life.

Advance care planning aims to discuss and prepare care choices for the stage in life when people no longer have the capacity to make decisions. When a person moves into a care home, there should be opportunities to discuss advance care plans sensitively at a carefully chosen time or when the moment arises. However, it is also important to respect the wishes of people who do not want to specify in advance what end of life care they wish to receive.  In summary, advance care plans, or similar expressions of views, are important ways in which people with dementia can express their wishes about end of life care. Currently it is arguable that not enough is known about how to implement these wishes effectively, especially where there is disagreement between a person’s advance care wishes and the views of family members or professionals.

To date, research has largely focused on describing the experience of patients with advanced dementia and the care they receive. This work has delineated abundant opportunities for improvement. Addressing those opportunities must be the overarching objective for advanced dementia research in the coming decade.

So, end of life care for people living with dementia is potentially complex, but does demand our attention. Whether you’re a politician, a person living with dementia, or a caregiver, or someone completely different, not talking about the complexities won’t make the issues go away.