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Covid in care and nursing homes in the UK has become the latest disaster, for example, “the disease may be circulating in more than 50% of nursing homes and mortality is significantly higher than official figures.”
Persons with cognitive impairment, examples of which include delirium and dementia, at the best of times can present a challenge for what we frame as “person-centred care”.
At a practical level, certain individuals who have been living with a chronic, progressive dementia for some time may lose all sense of what time of day it is. At night-time, they may get up repeatedly to check that the front door is locked, and get very anxious about this obsession unless that compulsive check is made. And, because they forget quickly, this can go on many times at night.
Or else, a person may suddenly have a drastic change in behaviour and thinking, and get quite aggressive or agitated, hyperactive, or even quite grandiose and flamboyant in behaviour. Such a flip into ‘hyperactive delirium’ might appear out of nowhere, but could result in a person also wanting to roam around, apparently without an easily understandable purpose.
Both dementia and delirium are significant issues in the era of “Covid19″, infection with the novel coronavirus. Dementia is a “frailty syndrome”, conveying the notion that people with dementia have an increased vulnerability, such that they never quite bounce back to where they were after a challenge such as an infection. The abrupt change which we call delirium can have a number of causes, which we largely view as predisposing or precipitating factors, but it’s relevant to Covid that a respiratory infection can cause hypoxia, electrolyte imbalances and sepsis/encephalopathy which all can produce or exacerbate a delirium.
I should like to focus here on delirium. Helpfully, the HELP team (“Hospital Elder Life Program”) has “created a resource page for all things COVID-19 and delirium, including a Patient Toolkit with all the materials necessary to help older adults maintain cognitive and physical functioning – and prevent delirium“. Delirium can occur out-of-the-blue in any care setting, including the acute hospital, care or nursing home, or at home. It’s tempting to ‘suspend’ personhood in someone experiencing an episode of delirium, as he is ‘not himself’. But this is a slippery slope, to denying personhood, identity of that person, and, at worst, might lead to denial of human rights. Human rights and person-centred care are enshrined in the clinical regulation of professionals, practitioners and institutions, so it would be unfeasible for delirium (and dementia) care to deny human rights or personhood. We know that there has been a number of attempts, presented as ‘social movements’, of activists, said to be ‘living with dementia’, publicised as upholding their rights. This has, of course, got a formidable precedent in the disability movement; dementia under English law is classified as a disability under the Equality Act because of the chronic effects of it. But such rights-based approaches, mainly presented en masse from charities and social enterprises, have tended to focus on a formulation of rights in an almost consumerist way, in a manner where they can be easily marketed through public communication channels such as the social media.
I believe rights are indeed important and indeed crucial – but such an approach has been rather to trivialise the significance of rights. The intentions are formidable, for example in raising awareness of rights and to try to stop and rail against elder abuse, which can lead to loss of fundamental rights such as liberty, privacy or dignity.
But such a simplistic, yet fundamentally important, approach can ignore what rights actually are. Rights have been the subject of considerable scrutiny in jurisprudence theory, as they are of course fundamental to the law. The late Prof Ronald Dworkin was professor of jurisprudence at UCL, and, through his seminal work, we are encouraged to believe that there are two fundamental frameworks; that rights are normally limited, but in exceptional circumstances absolute, or, otherwise, rights are normally absolute, but in exceptional circumstances limited. This led Dworkin to frame his ‘rights as trumps’ viewpoint, and, as an eminent lawyer trained under HLA Hart at Oxford, his thesis is certainly seminal.
But we all live in a civil society, meaning that rights come with responsibilities, and my ‘right’ has an effect on yours. In other words, you could argue that a resident with dementia can’t be allowed to roam around limitlessly, ignoring physical distancing, because of the risk of infecting others with a highly infectious agent. So it might be tempting, particularly if there are staff cutbacks (for example due to staff being ‘off sick’), to use pharmacological rather than non-pharmacological intervention in such a resident experiencing delirium.
In a recent ‘good practice guide’ from the British Geriatrics Society, entitled “Coronavirus: Managing delirium in confirmed and suspected cases”, it is mooted that, “here these interventions are ineffective or more rapid control is required to reduce the risk of harm to the patient and others, it may be necessary to move to pharmacological management earlier than would normally be considered.” And, observing the legal doctrine of proportionality, fundamental to English law where interventions are deemed both necessary and proportionate, this is a very sensible response to prevent other individuals becoming infected, and possibly because of underlying frailty themselves, difficult to treat.
But this is an admission that human rights are not in fact absolute, universal and inalienable, arguably. We have been conditioned to think that we can’t ‘pick and choose’ our human rights, or certainly can’t choose how or why we would choose to apply them, like an à la carte menu – in the same way we can’t choose which individuals to extradite (because readers of certain newspapers believe strongly that human rights are abused in certain circumstances.)
It might also suggest that our application of human rights in delirium care is context-dependent, which seems disturbing at an intuitive level. But this in itself is not a problem. We know from the recent furore elsewhere that guidelines are not meant to be applied in a blanket way, but should, rather, be tailored at a personal, individual level. The recent (excellent) SIGN 157 guidelines, “Risk reduction and management of delirium, a national clinical guideline”, March 2019, says carefully in the quick summary, “There is insufficient evidence to support a recommendation for the use of antipsychotics, dexmedetomidine, acetylcholinesterase inhibitors or benzodiazepines in the treatment of patients with delirium. Expert opinion supports a role for medication in specific situations such as in patients in intractable distress, and where the safety of the patient and others is compromised.” It says rather, “Healthcare professionals should follow established pathways of good care to manage patients with delirium“, referring to a suite of non-pharmacological multi-component interventions.
The problem with guidelines is that, in actual clinical practise, what originally seemed like a good academic idea can be impractical. Infection control is a key aim of treating the delirium in suspected or proven Covid, and we know that the medical regulator prioritises the prioritisation of treatment. We already know the range of arguments against the use of antipsychotics in delirium, which have been extensively studied elsewhere (for example this Cochrane review), but patient safety is the ultimate issue. The case for pharmacological intervention in residential homes for delirium can be easily made, but what happens in home care or domiciliary care where family members can find themselves easily stressed by a relative roaming around but where pharmacological intervention is not possible? Many persons with advanced dementia are living at home, and this indeed has been a goal of national policy, encouraging ‘independent living’ as far as possible.
Furthermore, it can be difficult to distinguish a propensity to roam around, pejoratively called ‘wandering’, resulting from advanced dementia – traditionally and unhelpfully called BPSD – from delirium. So not all people wandering around, with hyperactive delirium, will have Covid. We already know that older people can present altogether atypically, so not all people who are symptomatic or asymptomatic with Covid may have mounted a temperature or an obvious dry cough. So here does the precautionary principle apply, “a strategy for approaching issues of potential harm when extensive scientific knowledge on the matter is lacking. It emphasizes caution, pausing and review before leaping into new innovations that may prove disastrous“? Does erring on the ‘side of caution’ tip the balance from non-pharmacological to pharmacological interventions?
Arguably, there is a need for vigilance over this matter.
Look at the WHO definition of “elder abuse”.
“Elder abuse is a single or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust, which causes harm or distress to an older person. This type of violence constitutes a violation of human rights and includes physical, sexual, psychological, and emotional abuse; financial and material abuse; abandonment; neglect; and serious loss of dignity and respect.”
Inappropriate use of antipsychotics in “BPDD” in dementia or delirium, especially in the context of vulnerable individuals in society behind ‘closed doors’ with no visitors such as friends or relatives, might be an unintended consequence of behaviour in a pandemic that was intended as proportionate.
But, if all else fails, the whole issue for me has brought into sharp focus the relationship between rights and delirium in the context of person-centred care, and this is to be welcome.
Cited in a OECD report, it is reported that half of all people with dementia may have experienced verbal, physical or psychological abuse or neglect at some point.
We feel strongly that the discussion of ‘dementia rights’ is very serious, and far too important to be left to marketing leaflets.
Dementia rights affect many people, such as carers or care home managers, but not least people living with dementia themselves.
And yet it sometimes feels as if ‘dementia rights’ have primarily been interpreted according to the needs of the people other than those living themselves with dementia. And, disturbingly, there is no distinction between ‘consumer rights’ and other rights.
A wider of range of people should be involved in the future discussions of rights. There are burning issues to discuss, such as glaring inconsistencies in current law. What about those who have agreed to hospital admission, or at least show no signs of objecting to it, but who may still be deprived of their liberty in various ways – for example residing in a locked ward?
We know in theory that every effort should be made to prevent the need to deprive someone of their liberty. It must be used for the minimum time possible. The legislation is supposed to protect vulnerable people. But why the perpetual schism between rhetoric and reality?
The English Law Commission’s own recent report“372 Mental capacity and deprivation of liberty” noted that:
“It is concerning that people often do not feel safe, treated with dignity or that their human rights are respected whilst detained.”
Dignity is an essential intrinsic part of human rights law. It is not merely an ‘adjunct’.
In response to the war’s atrocities, the UN’s universal declaration of rights in 1948 provided that “all human beings are born free and equal in dignity and rights” under its article 1.
But Catherine Dupré comments:
“Protecting and defining dignity through human rights law is not always a straightforward business, especially because it often raises, in the words of the European court of human rights, a question of civilisation.”
It is critical now that we have an inclusive, wide-ranging debate, about how to progress. For example, an independent reviewhas set up for England and Wales, led by Professor Sir Simon Wessely, to look not just at our mental health laws, but also how they interact with services, good practice and the wider care system.
We must concede that changing legislation alone will not be enough to improve the lives of people affected by dementia, but, still arguably, a wider range of people with dementia and care partners should still have a seat at the table while this legislation is being changed.
In the “competence model”, a patient with dementia might be deemed incompetent to make a particular treatment decision, the decision must be based on an advance directive or made by a substitute decision-maker on behalf of the patient.
It seems that CRPD article 12 makes it impermissible to deny persons with mental disabilities the right to make treatment decisions on the basis of impaired mental decision-making capacity and requires the replacement of all regimes of substitute decision-making by “supported decision-making”.
The crucial difference is, therefore, that the “UNCRPD states that everyone with a disability should enjoy legal capacity on an equal basis with others in all aspects of life.”
Whatever local focus groups and tick-box “engagement meetings” take place, it is essential we have a thorough discussionof ‘dementia rights’ including specialists in law and dementia care, especially when so much is at stake. This is especially important as there are so many valid voices and actors in the ‘civil society’.
For some reason, the terms ‘person experience’, ‘patient experience’ and ‘customer experience’ have become conflated to a rather unhelpful degree.
I would like to be careful how I say this, though, because we do know that bad customer experience does exist for people living with dementia and care partners, and guidance or standards can help.
Corporate marketing can give high street brands a helping hand with adding competitive advantage, by making them more ‘dementia friendly’, and in return these high street brands can give a bit of marketing for the charity in return.
This is, of course, not the time for cynicism. ‘Dementia friendly communities’ have also in a more recent configuration which emphasises a rights-based approach.
I’ve often felt that the rights-based approach gets confused with party A taking party B to court over matter C, but they are much more of a question of a rights consciousness. The PANEL principles were originally proposed to articulate this rights-based approach, and are summarised here.
PANEL stands for Participation, Accountability, Non-Discrimination and Equality, Empowerment and Legality.
I have seen with my own eyes the subtle, and indeed not-so subtle, discrimination of society towards people with dementia. This is disappointing as the Prime Minister Dementia Challenge was fist introduced five years ago.
I might be standing in a room with my mother, known to have a diagnosis of mixed Alzheimer’s and vascular dementia, and a third person can often completely ignore her because of her diagnosis.
For all the millions of ‘Dementia Friends’ which have been created, the question remains whether a genuine cultural shift in attitudes has existed. Various unknowns exist, including how bad things would have been if there had been no public awareness campaign for dementia.
A significant problem which pervades all the work looking at whether there is merit in the dementia friendly communities approach is knowing how much time to give the dementia friendly communities to ‘take effect’.
Participation is something which can be looked at directly. Democratic inclusion is a matter of principle, and it would be interesting to know how many people with dementia, including in care homes, are actively supported to vote. This might involve making reasonable adjustments for participating in the voting process.
Many of these aspects can be looked at also by looking at how many persons with dementia, now patients of the NHS, are able to secure a GP appointment in the festival of ringing up at 8 am when the GP opens. Many barriers might exist, such as being oriented to the time, remembering the GP number, recalling the purpose of the appointment, and so on.
The scale of ambition is also worth looking at. We could look at how many providers are providing NHS information in an accessible manner, but this is venturing into the area of competitive advantage, especially where providers in dementia services exist in a private market.
But what is interesting, with the problems in legal aid and access to justice aggravated from 2012 especially, is how many persons with dementia on receiving a diagnosis are able to secure a lasting power of attorney.
Again, we would expect a significant difference right now between communities which are ‘dementia friendly’ and those which are not.
So, in summary, I feel that the focus on customer experience in high street shops is a bit of a canard, and wider issues of access to health, access to justice, access to health or participation in the democratic process should have been tangible benefits of ‘dementia friendly communities’ by now.
Various inventions were predicted for 2015 in the film “Back to the Future”.
Of course, an invention is not the same as an innovation.
An invention is the formulation of new ideas for products or processes, but an innovation is all about the practical application of new inventions into marketable products or services.
About doing or making something completely new that has never been done before, which leads to a material change in thinking, behaviour or outcomes.
One of the brilliant inventions/innovations was the “hover board”.
Probably a good thing these haven’t been invented for the mass market yet – though some clever bod has come up with a prototype – the baggy jeans and Converse look is just so Nineties.
The background to the modifiable factors relating to dementia are well rehearsed.
Approximately half of dementia cases might be attributable to known modifiable protective and risk factors (Smith and Yaffe 2014). The protective factors include the factors that determine brain development in early life such as maternal nutrition and health, and nutrition and cognitive development in early years. Education and lifelong learning also protect against dementia as does involvement in social networks. The risk of dementia is raised by substance abuse in adolescents and young people, head injuries and depression. Dementia also shares important risk factors with the major non-communicable diseases (NCDs) including cardiovascular disease, diabetes, cancers. These are the behavioural risk factors of physical inactivity, smoking, alcohol and poor diet, and the linked intermediate risk factors such as high blood pressure, raised cholesterol and obesity.
There has been some difficulty in getting this relatively simple public health message across.
This is illustrated, for example, by the rather resistant belief amongst people that ‘nothing can be done about dementia’. In fact, an enormous amount can be done to promote living well with dementia. And some factors may indeed slow rate of progression or delay onset, in a way we don’t properly understand yet.
Some campaigning initiatives have started to gain momentum, though. This infographic is from the Alzheimer’s Disease International “World Alzheimer Month”.
And there are developments afoot in the provision of information for patients.
Here’s an example of what Highbury Grange Medical Practice seem to be offering.
The aim is for all patients in England will have access to their GP medical records online by 31st March 2015. This means you can have secure access to relevant parts (current medications, immunisations and allergies)of your record from devices that can access the internet.
And now Sir Bruce Keogh has got really into ‘wearable technology':
It sounds reasonably convincing.
Prof Sir Bruce Keogh believes that gadgets similar to fitness trackers, which are growing in popularity, and others resembling games consoles will revolutionise the monitoring of patients’ health, especially those with a serious condition.
“Technology is emerging which enables those to be brought together and transmitted through mobile phones or other methods where health professionals can analyse them and act upon any warning signs,” Keogh says.
Wearable technology could easily prove useful for people with heart failure – one of the most common causes of admission to hospital – and thus relieve the strain on overcrowded hospitals.
“I see a time where someone who’s got heart failure because they’ve had a previous heart attack is sitting at home and wearing some unobtrusive sensors, and his phone goes, and it’s a health professional saying: ‘Mr Smith, we’ve been monitoring you and we think you’re starting to go back into heart failure. Someone’s going to be with you in half an hour to give you some diuretics’,” says Keogh.
Technology “enables you to predict things, to act early and to prevent unnecessary admissions, thereby not only taking a load off the NHS but, more importantly, actually keeping somebody safe and feeling good”.
For people living well with dementia, simple apps could be made which could be installed on smartphones.
For certain persons living with dementia, prone to “wandering” (a term I very strongly dislike), GPS location devices might be of interest; but by no stretch of imagination are these devices relevant to all people living with dementia.
The app might also be able to monitor aspects of cardiovascular health. There is a strong link between cardiovascular health and cerebrovascular health, and indeed the success of tackling cardiovascular risk factors in primary care has caused some interest in the possible falling in England of the prevalence of dementia.
I have often ‘complained’ to other specialists in dementia how little we know about how easily people living with dementia, across different types of dementia, at different extents of ‘severity’, cope with all technology designed to help them live with dementia.
But it is possible that such apps could be designed to be compliant with the Equality Act (2010), offering giant lettering for those people with visual object perception problems, or ‘read aloud’.
There could be a set of questions like ‘Do you have trouble remembering dates?’, ‘Do you have problems remembering phone numbers”, “Do you have problems cooking?”, which could trigger further intervention by a community occupational therapist.
If someone living with dementia notices their legs going stiff, or they have trouble walking, a referral to a community physiotherapist could be triggered.
If someone living with dementia notices the development of a ‘sweet tooth’, a referral to a community dietitian could be triggered.
And so on.
There might be ‘menus’ which are more suitable to caregivers, who are often spouses, or children (particularly daughter and daughter in laws), but including paid carers. There are clearly ethical issues here.
I anticipate such apps will be of interest to people who’ve just been given a diagnosis of dementia, but the usual criticisms will hold (i.e. it’s another ‘to sell’ to someone with a personal budget, it’s “typical privatisation of health and care). But I feel we should be looking into the social prescribing of facility to those who desire them, as an alternative to expensive drugs which can have limited efficacy.
Back to the future..
or back to planet Earth.
Smith D. and Yaffe K. (2014) Letter: Dementia (Including Alzheimer’s Disease) can be Prevented: Statement Supported by International Experts. Journal of Alzheimer’s Disease 38: 699–703 DOI 10.3233/JAD-132372
“Thought diversity“, I feel, is fundamentally in tune with what I feel about the ethos of living well with dementia: recognising what people can do, rather than what they can’t do.
This is particularly useful in one particular context. The general topic of thought diversity in the workplace recently has received some deserved attention. There are two important approaches in this context of performance management in the workplace: equality and diversity.
I am certainly not about to suggest what an employer should do; nor what a person who may be about to receive a diagnosis of probable young onset dementia might do. I am just going to think about how thought diversity could be used to produce an effective skills mix for the employer, so that any individuals with young onset dementia can still contribute to the full.
Equality tackles an imbalance where some people may be considered treated badly due to the effect that a protected characteristic has (such as age, sexual orientation, or race, for example); diversity is simply accepting that everyone is different. Legally, dementia can be defined as a disability under the guidance of the Equality Act (2010).
It is essential to recognise the functioning of the Equality Act (2010) for dementia. Disability is a “protected characteristic” under that statutory instrument. Prohibited conducts, like indirect or direct discrimination, are unlawful; reasonable adjustments must be made for disability. The Act specifically states that employees are under a duty to take reasonable adjustments to provide aids/ auxiliary services if these could alleviate any disadvantages and costs and not be passed on to the employee.
What is this equality?
But in political philosophy, the question has, in sophisticated circles, become “equality of what?”
As Anne Phillips describes in a paper for the London School of Economics:
“Two themes have become part of the common-sense in current thinking about equality.
The first is that defining equality in terms of outcome – equalising where people end up rather than where or how they begin – displays a distressing lack of sophistication.
Such a definition immediately begs the question of what we are seeking to equalise (income? happiness? welfare?), and seems to forget that measures to deliver equality on one of these metrics will deliver inequality on another.
Equalising resources notoriously overlooks the diversity of preferences and tastes: since what people want varies enormously, any strict division of the world’s resources will leave each of us with an excess of what we consider worthless and probably too little of what we really desire.
Yet if we turn instead to equalising people’s sense of well-being, we may end up giving more to the constitutionally dissatisfied than to the easily content. Defining equality in terms of outcome presumes an easy answer to the ‘equality of what?’ conundrum, gliding over complex issues of what equality means.”
The “equality of outcome“, for example, causes a particular controversy, arguably.
“Researchers concluded that equality of outcome was patronising, humiliating and embarrassing to minority groups. It could be socially divisive and evidently fuelled hostility and resentment in areas where prejudice previously did not exist as a serious social problem.”
An approach based on equality for young onset dementia
The basic accusation is that attempts for equality end up being rather artificial, but it is true that treating dementia as a disability to promote equality, arguably, must be a more useful starting point that a policy where citizens are merely “friendly” to people living with dementia with cognitive impairments such as problems in memory. Dementia is considered ‘young onset’ when it affects people of working age, usually between 30 and 65 years old. It is also referred to as ‘early onset’ or ‘working-age’ dementia. And it might appear meritorious for an employer to everything in his or power to keep a person with young onset dementia in a job, by providing ‘reasonable adjustments’ such as adequate signage, diaries or memory aids.
But is this approach based on equality necessarily the right approach?
It’s already conceded there’s a fair distance to go to make enforcement against disability discrimination offences a reality. Making goods and services easier for disabled customers has been a policy rumbling on for some time (see for example this document). Only last month, it was described yet again that access for disabled citizens to high street shops was “shocking”. The legal underpinning of this failure in equality is in contrast to the aspirational nature of ‘dementia friendly communities’ involving high street shops, such as in Fareham. In theory, it is all very well to say that an employee newly diagnosed with young onset dementia should be given reasonable adjustments as dementia is a known disability.
But there are some problems here. Some people with ‘soft symptoms’ may not wish themselves to be labelled with a disability, or a diagnosis, even if this means that they might be able to access certain finances. Also, in the majority, people with cognitive problems, who later go onto receive a diagnosis of young onset dementia formally, leave formal employment long before they receive that formal diagnosis (at which point the reasonable adjustments would have kicked in). We all know of employers who would really not want the bother of having to make reasonable adjustments, either for a person developing a dementia. And we know that all sorts of excuses tend to crop up prior to appointment of some employees in the first place. Somebody applying for a job, who is open about the fact he may be developing an early dementia, is unlikely to receive a sympathetic hearing in shortlisting.
But hold on a minute. Is it actually the employers’ fault?
The situation is very serious.
Kate Swaffer describes, through the construct called ‘prescribed disengagement‘ she was the first in the world to articulate, how people who have received a diagnosis of young onset dementia are, rather, actively encouraged effectively to give up by professionals in the health and care sectors. Work engagement, with some focused attention, could conceivably work though the strong determination of employers. For example, Robertson and colleagues (Robertson, Evans, and Horsnell, 2013) recently described an innovative demonstration program called “Side by Side” that was initiated to assess the feasibility of supported workplace engagement for people with younger onset dementia. This is truly laudable. People with young onset dementia, even if they have been demoralised by a cultural phenomenon of ‘prescribed disengagement’, might instead be encouraged to pursue positions in their current place of employment playing on their cognitive strengths. And this is recognised in ‘thought diversity’.
Is #thoughtdiversity a better option?
According to Deloitte’s excellent paper on ‘Thought Diversity’, acknowledging different thinking styles or cognitive diversity can beneficial for organisations to ‘hire differently, manage differently, promote differently’. In other words, employees can be matched up to tasks according to their cognitive strengths, and this includes people living in early stage young onset dementia. Such an approach would be more positive, beneficial for the employer and employee, focusing on what a person living well with young onset dementia can do, rather than what he or she can’t do. Such a workforce, it is anticipated according to Deloitte, might show greater resilience, and also be far less prone to ‘group think’.
I feel we do need to think ‘outside the box’, innovatively, to think how we get the best out of people. People who are about to receive a diagnosis of dementia may wish to stay in employment for as long as possible, as that is where friends are made, and of course the source of income comes at a critical time when there might be other commitments such as family, a mortgage or pension. Human resources will in time need better tools for identifying different cognitive styles. There will be in any team people who are more suited to remembering things, people who are good with words, people who are good with planning. Cognitive assessments, whether relatively informal psychometric tests for different cognitive styles or more detailed, might be able to identify what individuals are good at, such that a team might as a whole consist of the ‘right skills’ and might display cognitive diversity. This would, I feel, be an altogether more constructive to approach the issue of employment for people with young onset dementia, based more on diversity than legal equality.
But I do think both employer and employee need to know that these legal equality rights do exist, as they are potentially extremely powerful indeed.
Robertson, J., Evans, D., Horsnell, T. (2013) Side by Side: a workplace engagement program for people with younger onset dementia, Dementia (London), 12(5), 666-74.
Strange through it may seem, I have been most influenced in my philosophy of living better with dementia by the late Prof Ronald Dworkin who died in 2013 at the age of 81 (obituary here).
One recent campaign has the tagline ‘Right to know’ from the UK Alzheimer’s Society – about the right for you to know if you have dementia as a diagnosis, a right to treatment, and right to plan for the future.
I feel that people newly diagnosed with dementia have other rights too. I would say that, wouldn’t I. Above all, I feel that people who have received a diagnosis of dementia have a right to live well. This is truly a legal right, as this is not negotiable under the Universal Declaration of Human Rights. Recent case law, in the judgment from Lady Hale in R v Cheshire West and Chester Council (et al), re-emphasises that human rights are inalienable. And given that dementia is a disability under law, the right of that person with dementia is a right to dignity, reinforced by our universal human rights.
Focusing on a right to treatment further consolidates the biomedical model which I think is utterly unjustified. We have just seen the peak of one of the most successful campaigns ever mounted by Pharma and large charities for dementia to raise funds for pharmaceutical approaches to dementia. But at the expense of offering jam tomorrow there was very little on offer for people currently living well with dementia. The answer given to Helga Rohra by the World Dementia Envoy gave little in the way of concrete help for people currently trying to live well with dementia. And the ignorance of this is not benign – for the millions of dollars or pounds sterling spent on molecular biology and orphan drugs for dementia to meet the deadline of 2020, this amount of money is being taken out of the pot for developing the evidence base for and for strategies for living better with dementia in a non-pharmacological way.
Just a minute. Look at the evidence. The medications known as cholinesterase inhibitors are generally thought not to slow down the progression of Alzheimer’s disease in humans, even if they have a short valuable time window of use for symptomatic treatment In the UK, and across the world, there has been a drive for reducing the number of inappropriate prescriptions of antipsychotics for people living with dementia; there is now a growing consensus that where symptoms exist they often are due to a fundamental failure in communication with that person living with dementia, and often other therapeutic routes are much more suitable (such as psychological therapies).
The great FR Leavis, intensely under promoted at Cambridge, reminded us that criticism had to be free and flexible: and hence the famous description of the ideal critical debate as an ongoing process with no final answer: “This is so, isn’t it?” “Yes, but …”
Criticism of the English dementia policy may seem like criticism of senior clinicians, senior personnel in charities or senior politicians, but Leavis gives us a powerful reminder to stand up for what it is right. Surely, people living well with dementia have a right to comprehensive high quality dementia care and support? The evidence in support of multidisciplinary teams, including social work practitioners, speech therapists, doctors, cognitive neuropsychologists, occupational therapists, speech and language therapists, working to produce pro-active plans is now overwhelming. There is now increasing evidence that specialist nursing could prevent many acute admissions to secondary care.
As the late Ronald Dworkin asked us to consider, we might think about what makes an “interpretation” true. As Dworkin notes, psychoanalysts interpret dreams, and lawyers interpret contracts. I would go as far as to say clinicians, of various backgrounds, interpret whether a person presenting with a particular cluster of mainly psychological symptoms is presenting with a dementia. I don’t think the diagnosis of dementia is necessarily easy to make. Given that you’re giving a diagnosis of dementia not just to a person with possible dementia but also to his friends and family it is essential to get right; not to misdiagnose depression as dementia for example. My gut instinct is that doctors of all variety do their utmost to get this diagnosis correct. I think there is also a degree of interpretation in how much a person will successfully adapt to their diagnosis in taking an attitude of ‘living well’, or how they will put their faith in pharmacological treatments. The drugs do work for some people for part of the time after diagnosis, so their importance must not be diminished either. I think there is also a degree of interpretation of how disruptive a diagnosis of dementia might be for that person and his or her community.
Dworkin also notes you would be prone to sack a Judge who said, “I am not sure if this person is guilty or not guilty. I think he’s guilty, but you could probably find great many judges who finds the person not guilty.” It is possible that in the more complicated cases a Doctor might find a person living with dementia, another one not living with dementia. Dementia is presented as a definite diagnosis, a binary decision; but this would be to ignore that even the diagnostic criteria, such as the critical importance of memory (or not), has changed with time. Likewise, there has been a growing conflation of whether you fail a series of tests is the same thing as having a diagnostic label; see for example how some people recorded as having ‘delirium’ in the medical notes have in fact, strictly speaking, failed a specific set of screening tools.
But we can say that there are non-medical routes which are not an idle exercise but are of a person flowing from the diagnosis of probable dementia. This is there is much which can do to enhance the living environment of a person, whether a hospital ward, home or town. Or somebody can be directed towards advocates who can help persons with dementia communicate decisions. Or a person can be directed to inexpensive assistive technologies or lifestyle adjustments that can allow a person to live with dementia just like any other disability. This is framing long term care as living with a condition, rather than the single hit treatment.
Dignity, independence and a vast array of other values will, I feel, are a very necessary outcome of this more helpful approach to dementia. The person who has received a diagnosis of dementia is as much of a need of an acknowledgement of uncertainty as a water-tight explanation. The person who has received a diagnosis of dementia needs to be partnership with the people who wish to share that diagnosis with him or her.
I feel it is now time to unmask the medical professional who may simply be not be able to cope with this cultural shift. The medical profession does not know all the answers, nor indeed do all the people who’ve signed up to the Pharma script.
People who want to live better with dementia can be secure in the knowledge that that is their human right. They have a right to this solution, wherever it comes from.
Is there truth in interpretation? Prof Ronald Dworkin
The importance of the ‘lived experience’ at the Alzheimer’s Disease International conference in 2015
This year, the Alzheimer’s Disease International under Marc Wortmann has done outstanding work.
It is known for its huge impact in allowing nation states to flourish with dementia strategies
Its output is phenomenal (see for example this latest paper). I have no doubt whatsoever ADI will continue to flourish under Glenn Rees, the incoming Chair (currently Chair Elect).
I’m still very excited about the 30th International Conference of Alzheimer’s Disease International “Care, Cure and the Dementia Experience – A Global Challenge” 15-18 April, Perth, Australia, next year.
People who are very close to me will be there.
It is, also, a lovely city.
The conference website is here.
It was always emphasised that this conference would showcase the lived experiences of people with dementia. People living with dementia and caregivers were indeed encouraged to attend.
This is a part of the list of posters to be presented on Thursday 16 April 2014.
The two submitted by Chris Roberts and Truthful Kindness are shaded in a dark red.
The titles most clearly say ‘lived experience’ in the titles.
They were submitted as oral presentations, as the two people involved did not want them as poster presentations.
Indeed they did not opt for the ‘poster/oral’ option specifically for that reason.
Communication with the world about my life’s experience with dementia after diagnosis
Arts and Engagement
Living well with dementia: a lived experience
Arts and Engagement
Truthful Kindness’ affiliation is Dementia Alliance International, Iowa; it was never submitted as United Kingdom. The irony about Truthful’s intended oral presentation is that she wished to explain how people with dementia can use all sorts of media to express themselves artistically and creatively. Arts and creativity is a huge policy plank in living well with dementia internationally.
It would have been clear to any diligent reviewer of these abstracts, from their submitted biographies, that both Chris and Truthful were genuinely living well with dementia.
Here’s Chris even holding the flyer of the Dementia Alliance International group, at Glasgow earlier this year in the Alzheimer’s Europe conference on dignity and autonomy in dementia.
Chris is currently a Board member of the Dementia Alliance International.
I understand, from having spoken to one of the juniors at the Alzheimer’s Disease International, that there may even be a chance for poster presenters to give short oral presentations of their work. But I think this possibly may be worse.
It has been explained to me that the environment for the poster sessions is very off putting. It is a crowded room, with not much space for the poster itself. It is a very noisy environment, which is very distracting. In other words, this can be an environment which is potentially disadvantageous to people with early dementia who wish to present.
I am, of course, pleased that the keynote speakers for this conference include two friends of mine, and whom I admire massively, and who are living well with dementia, Kate Swaffer and Helga Rohra.
As is known, I consider Kate to be exceptional in every way.
These are two symposia from the scientific programme in which they might have appeared: “younger onset dementia” and “engaging people living with dementia”. From eyeballing the titles of these talks, I don’t see many speakers talking about their own personal lived experiences.
The only parts of the conference yet to be revealed are the ‘workshops’.
The details of the workshops are given as follows:
Day 2 Dementia Friendly Communities
Day 2 “How to” topic to be confirmed
Day 3 Clinical trials
Day 3 “How to” topic to be confirmed
Day 3 Arts and dementia
Day 4 World Alzheimer’s month
Day 4 “How to” topic to be confirmed
I am extremely honoured to be on the international advisory board for the 2015 conference. I should therefore not want to criticise the organising committees in any way for their hard work.
But I cannot be a silent bystander to this either. The whole point about viewing dementia as a cognitive or behavioural disability secondary to a brain disease is that it then comes under international and domestic laws (for example, for UN Convention for people with disabilities and the Equality Act).
Ignoring two people’s wishes to have an oral presentation, as they cannot do poster presentations, is not making reasonable adjustments for their disability, one could easily argue.
I understand that the number of people with dementia fluctuates year on year, so it can be difficult to predict the number of people with dementia who wish to present. But, even with the limited number of places for the two symposia I have cited above, there doesn’t appear to me a big representation of people living well with dementia amongst the speakers, but I could be wrong. This also seems to be the case for other symposia, notably the one on “dementia friendly communities”?
I think the Alzheimer’s Disease International conference 2015 will turn out to be a brilliant opportunity for us to meet up; and we will also get a chance to discuss ‘cure’, ‘care’ and ‘living well’.
But Richard Taylor, living himself with a dementia, is right in his presentation from last year – where is the representation of evidence of psychosocial techniques?
I’d like to ask where is the evidence looking at ‘living well’, such as GPS trackers, design of wards, design of houses, the wider built environment, incontinence, eating well, assistive technology, ambient assisted living, advocacy, and so on?
On that note, I do strongly applaud the work of ‘Dementia Alliance International‘, which is truly representing the community of people living with dementia.
We hear words such as ‘challenge’ being used all the time in relation to dementia.
Hopefully the organisers will rise to the ‘challenge’ of living up to the reasonable expectations of those people with lived experiences wanting to take part fully in the ADI conference 2015 in a format they feel most comfortable with (and which makes reasonable adjustments if required).
There has been some startling consensus over the national political settlement, including as it applies to English dementia policy.
There has generally been cross-party agreement about personal budgets, even though the ‘direction of travel’ from the UK Labour Party is to favour a ‘rights based approach’ to advance choice and control rather than merely though a financial budget.
There are good reasons not to put many eggs into the personal budget basket for dementia; these include how the range of ‘products and services’ for dementia can be in places rather underdeveloped, and the formidable potential safeguarding issues for certain vulnerable individuals living with dementia.
Another consensus is to be found in wellbeing, or living well.
I was struck by a recent recommendation from the first ever report by the All Party Parliamentary Group on Wellbeing Economics, entitled “Wellbeing in four policy areas” (published September 2014):
“Health and Wellbeing Boards should bring together public health professionals, Clinical Commissioning Groups, GPs, and other stakeholders to develop strategies for ‘whole person care’ which effectively integrate mental and physical health.”
Unknown to me, they had been doing great work even prior to the last UK election. Their ultimate aim, unsurprisingly, is to make wellbeing into a pervasive policy strand that straddles across all areas of life.
This ‘wellbeing prism‘ has impacted on various areas of policy, I suspect, in the past, like ‘The Big Society’. I have always felt that the ‘dementia friendly communities’ policy in England, heralded in the Prime Minister Dementia Challenge, although clearly having some roots in the Japanese ‘caravans’ ‘befriending’, fits well into the ‘Big Society’ ethos.
One of the problems with both ‘dementia friendly communities’ and the ‘Big Society’ has been whether the civic sense of solidarity might diminish statutory obligations.
I have witnessed the problems with this, first hand, in writing my book ‘Living better with dementia: champions for enhanced communities’ which I hope to publish next year. The same tensions exist in statutory obligations in the form of equality and human rights law, and statutory entities, and non-statutory community-driven ones there too.
As the O’Donnell Report puts it, wellbeing:
‘leads us to place greater weight on the human factors that explain the big differences in wellbeing, but that tend to be pushed to the margins in traditional policy making’.
There has been some focus on how we need an ‘alternative measure to GDP’. Cynics unsurprisingly argued that such a measure might inevitably gather political momentum given the problems we have had with economic growth in the last few years.
But the general arguments from the APPG on wellbeing economics make an enormous amount of sense to me. Julian Huppert is the current MP for Cambridge, and I dedicated my current book to his mother Prof Felicia Huppert, Professor of Wellbeing at Cambridge. Julian is, to my knowledge, on the APPG on wellbeing economics.
The next parliament, I hope, will see a continuation of a focus on wellbeing in policy. As pointed out in their first report, there is considerable overlap with the wellbeing field and that of the ‘social determinants of health’.
In my next book, I continue with analysing this overlap, using housing as an example. Housing is clearly an area which impacts upon the quality of life of people living well with dementia, not just from architectural perspectives of design, but also how spaces are organised to facilitate personal interaction.
Similarly, planning in the built environment is important, with considerations of inclusivity and accessibility.
These are all ‘desirable’ (or even ‘essential’?) attributes of the ‘dementia friendly communities’.
Unpaid caregivers and paid carers, like professionals, are vital in the social capital of these communities too.
It is said elsewhere that while there has been a strong focus on GDP-style economics the lack of focus on wellbeing means that we do not touch upon many policy areas, such as strife caused by marital breakdown.
I feel that this touches upon another tension of dementia policy, this time at a global level.
We know, for example, loneliness is an important source of emotional morbidity for people who have received a probable diagnosis of dementia all around the world.
Also, jurisdictions have been encouraging the aspiration of people living with dementia to live independently; in other words, not institutionalised in some form, as long as possible. This, I think, is intuitively right, so long as it is not perceived as a ‘failure’ if somebody does need the support and care provided from an institution.
There are some people who believe that the ‘successful ageing’ and ‘ageing in place’ movements have overplayed their hand; with cynics pointing out they fit nicely into the ‘small state’ narrative, a rather individualistic narrative, which takes little account of our cohesion as a society.
But this I genuinely think would be to analyse the issue too much but with one important proviso.
That proviso is that I don’t think you can value people simply in terms of their economic productivity.
I refer to this ‘equality of wellbeing’ even in my Introduction to my new book. Such equality of wellbeing throws a different light on equality driven by a purely economic sense.
In summary, in reference to the first ever report from the APPG in wellbeing economics, as the next Government and the Civil Service turn their minds into thinking about wellbeing and health policy, it will be forefront in their minds that we are about to embark on a huge behavioural change bringing together the NHS and social care.
This transformative change to ‘whole person care’ will bring great opportunities, I feel, as well as formidable challenges, not least funding considerations at a local and national level.
But I feel like the current Government, and like future ones hopefully, that a focus on wellbeing is desirable. O’Donnell is reported to have said, “If you can measure it, cherish it!”
Ideally, it would be nice to have some form of metric to see whether wellbeing interventions have any effect. I am mindful of the excellent work by Prof Sube Banerjee and colleagues on DemQoL, but others exist. And of course we should not want to end up where we started: in a target driven culture which hits targets but misses the point (as famously phrased by Sir David Nicholson).
There might be desirable effects of such metrics, though. They could be formally put into grants for research for living well with dementia; to see whether some activities are more beneficial in care homes, where there is a high proportion of people living with dementia often, than others.
The Baroness Sally Greengross asked me to put in a chapter on arts, music and creativity in my current book; so I did.
But, as the new APPG report on dementia this year rightly discusses, such a metric could be used to incentivise the use of the arts and creativity to improve the quality of life of individuals in society. And I have no doubt whatsoever that arts and creativity are a linchpin of dementia friendly communities too.
The APPG in dementia earlier this year, under Sally’s leadership, urged the importance of high quality commissioning in post-diagnostic support for dementia.
If we have more a ‘joined up’ approach to commissioning and policy, in parallel with the breaking down of silos needed for ‘whole person care’, I think England can consolidate its formidable lead in the ‘dementia friendly communities’ policy in the world.
Other jurisdictions might even follow suit.
Gus O’Donnell (Chair) – and Angus Deaton, Martine Durand, David Halpern and Lord Richard Layard(2014). Wellbeing and Policy. London: Legatum Institute. Accessible at: http://www.li.com/docs/default-source/commission-on-wellbeing-and-policy/commission-on-wellbeing-and-policy-report—march-2014-pdf.pdf?sfvrsn=2
Wellbeing in four policy areas: ￼Report by the All-Party Parliamentary Group on Wellbeing Economics (September 2014). Accessible at: http://b.3cdn.net/nefoundation/ccdf9782b6d8700f7c_lcm6i2ed7.pdf
All-Party Parliamentary Group on Dementia assesses progress of the National Dementia Strategy for England
2014 report: The National Dementia Strategy: Change, progress and priorities
Accessible at: http://www.alzheimers.org.uk/site/scripts/download_info.php?downloadID=1447
Ed Miliband, most people agree, is set to be the leader of the largest party at Westminster next year at least. This would give him overall charge of the legislature and the executive on 8 May 2015.
He has also pledged to produce 20,000 extra nurses, though talk is cheap. George Osborne has failed on virtually all ambitions that were set for the economic performance of the current Government. The Conservative-Liberal Democrat coalition therefore bequeath the next Government with a society with a terrible frail economy.
This UK economy is essentially a bargain basement one. It is easy to spot the major fault with ‘the record number of jobs’ meme, as the actual till receipt income is very low. And yet the Conservative want to pay for tax cuts – we’ve gone from an over bloated state to an under nourished one.
I had the enormous pleasure, with two other Dementia Friends Champions Chris Roberts and Jayne Goodrick, of giving a Dementia Friends information session at my law school yesterday. I can’t praise enough the amount of support we were given from the people who run Dementia Friends.
Forgive my photography. I am no David Bailey*. We actually had a good turnout, but I managed to capture the part of the audience which was very lean. Chris Roberts (@mason4233) lives well with a mixed type of dementia, thought to be a mixed Alzheimer’s disease and vascular dementia.
Somebody came up to me at the end of the audience and said, “It was absolutely brilliant as it was just incredible to see for my own eyes somebody living well with dementia.”
The “Dementia Friends” initiative has been a successful one. From the Alzheimer’s Society, and supported at a distance by Public Health England, it is modelled on the Japanese ‘caravan befriending’ movement. Its aim in policy terms was to break down the stigma, prejudice and discrimination which can happen against people living with dementia. These factors can contribute to the social isolation often experienced by people on receipt of a probable diagnosis.
“Dementia Friends” has been brilliant for myth busting, with actual facts about dementia too.
Recently, Kate Swaffer (@KateSwaffer), leading international advocate living well with dementia, and working with Alzheimer’s Australia, leading for the Dementia Alliance International, met Dennis Gillings this week in a small group of people for dinner. Gillings is the newly appointed World Dementia Envoy.
For reasons which are completely inexplicable, there is no established substantial representation on that panel from the communities of people living with dementia or caregivers, although Hillary Doxford was documented in the Communiqué of the last meeting just gone.
When Dennis met Kate recently, Kate quipped, typically characteristically in a beautiful tongue-in-cheek manner, she had not ben dribbling into her soup (Kate’s blogpost here).
But “Dementia Friends” is an interesting example of a private-public initiative with a £2.4 million funding base. Had this been left entirely to ‘market forces’, it is unlikely there would have been national outreach for this unique project. Inevitably the topic in policy terms is whether the substantial cost of Dementia Friends is offset by the value of raising the profile of dementia and caregivers. Where it might fail on its outcomes, and time will tell, is how the pledges of turning communication into action are actually hard evidenced through the number of pledges (irrespective of whether it will hit its target of one million within an extended deadline of the end of 2015).
In my opinion, it has been.
Two days previously, I enjoyed being at the Methodist Central Hall for a day for the Dementia Action Alliance.
And yet it is also true that social care is on its knees.
You don’t have be a great story teller to communicate a tale of the NHS on its knees.
This is somewhat cognitively dissonant with MPs wearing their Dementia Friends badges with pride, one could argue.
I agree with Jeremy (tweet here) in that the third sector should not need to apologise for fundraising. Making a surplus for a charity is a raison d’être for a charity akin to the duty to maximise shareholder dividend for a business.
But larger charities share many operational and cultural characteristics with corporates conceivably, and therefore the principles of a good ‘corporate citizen’ could easily apply to large charities with substantial revenues.
Sube Banerjee, long time supporter of the Alzheimer’s Society, and, perhaps more significantly here, co-author of the previous 2009 English dementia strategy came to the Dementia Action Alliance table with some noteworthy criticisms of how the current strategy had been executed.
Firstly, Sube, now a Chair of dementia at the Brighton and Sussex Medical School, commented on the devaluing of the ‘cost’ of a diagnosis to £45, and commented specifically on the culture of a ‘high quantity low quality’ approach to diagnosis.
Indeed, the 2009 English dementia strategy, called ‘Living well with dementia’, refers to the need for high quality diagnosis.
And the English dementia policy as it was then, before it got taken over by the Prime Minister’s Dementia Challenge, due to expire next March 2015, also warned about the lack of post-diagnostic support.
People living with dementia, and their family members, have consistently remarked to me how they have been told by medical professions that their rôle is at the very start and very end of “the dementia journey”. They won’t be there for them in between.
We are all aware of recent findings that 9 out of 10 care homes failing to meet standards set by the regulator the Care Quality Commission, reported not just in the Daily Mail.
So there is an overwhelming sense that people with a possible diagnosis of dementia are being set up for a fall by an inadequate care system, which is disjointed, increasingly privatised, and undervalued.
One of the undesirable consequences of this bargain basement economy is the sheer undervaluing of paid carers on zero hour contracts, some not even getting any travel expenses or the national minimum wage.
This poses serious questions about us as a society. So does the lack of support we appear to be giving unpaid family caregivers, an army of which nearing a million are the backbone of the entire system.
But Jeremy’s tweet does also pose serious questions about what charities could or should fundraise for. I say this as I remember one of own interview questions to read medicine at Cambridge – which I did between 1993 and 2001 – “to what extent should charities take the place of a properly funded NHS?”
Well, this question has taken on a new twist. I do not see there to be a ‘competition’ as such between ‘dementia advisers’ of one charity and ‘specialist nurses’ from another third sector charity. I think they co-exist. ‘Dementia advisers’ are possibly more useful for the more independent parts of the support of “the dementia journey”. ‘Specialist nurses’ are pivotal at all parts, including the care part of ‘the dementia journey’.
It has struck me how not only cost effective clinical specialist nurses are, in providing proactive case management for people with dementia with personalised care plans, ‘nipping in the bud’ complications from medical conditions. I know internationally one of the campaigning for fundraising themes is the substantial co-morbidity of dementia. People living with dementia often have a plethora of other problems, such as in joints, heart or lung.
Sally Greengross has long made it been known that the post diagnostic support for dementia is not good enough. Sally Greengross is the current Chair of the All Party Parliamentary Group on dementia. Her predecessor, Jeremy Wright MP, currently the Government’s Attorney General, launched the highly successful policy here in England of an ambition to reduce the number of inappropriate prescriptions for antipsychotics predominantly in care homes.
Hospitals can be some of the worst places a person with dementia to end up in. Likewise, it shouldn’t be conceived that secondary hospital care is necessarily synonymous with someone who has ‘failed’ somehow. But, say, end of life nurses will be able to provide expert help, wherever the appropriate care setting is deemed to be for a person living with dementia (and his/her friends or family).
And it is therefore possible charities such as Dementia UK and others might be able to fill these gaps in service provision. For a start, clinical nursing specialists comprise an innovative way of delivering the dementia post-support service. And the NHS has a statutory duty to promote innovation.
However, I should say that that statutory clause (14X) on CCGs is from the much loathed Health and Social Care Act (2012), about to be repealed by the next Labour government.
It is sometimes the case innovation can be incubated in places other than the NHS, and we’ve already seen a lot of goodwill and real-life financial support for Macmillan nurses. It would be impossible now to think of palliative care for nursing in cancer to be without Macmillan nurses – and the prime contractor model could be a way of providing sustainability in critical areas of services. This is ONLY provided that the quality and cost effectiveness components are managed correctly and for the benefit of the taxpayer. The next Labour government wishes to bring out a huge systemic innovation of integrating health and care into whole person care. This is long overdue, as, for example, it is impossible in places to discharge NHS patients to social care in s timely fashion. This is not cost effective; it is insulting particularly to patients including frail old citizens who do not wish to be in hospital anyway, and do not deserve the pejorative insulting label of “bed blocker”.
I am sure Alistair (@ABurns1907), or whoever ends up predominantly penning the new English dementia strategy, will wish to give careful consideration to how this post diagnostic support can be provided. Jeremy has a point, but up to a point.
*Joke by @JayneGoodrick.