Dementia

Time to press ‘refresh’ on innovative post-diagnostic care for dementia

Shibley Rahman 0 Comments

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There’s no way of avoiding the issue. The drive towards improving ‘the diagnosis gap’ for dementia has been dreadfully depressing given how incredibly poor the post-diagnostic systems can be.

NHS England, in collaboration with others, which has a formidable track record in getting things disastrously wrong in dementia policy, are said to be fine-tuning a possible NHS outcome measure for people living with dementia independently with a good quality of life. One can only imagine.

Doing things differently is not some cheap meme as a cover for huge cuts at local and national level here, however. The chance to improve lives after a diagnosis in recovery, enabling meaningful choices, giving the chance for people to take part in a mainstream services such as education, housing and transport, are all pivotal. And commissioning should reflect that. The legal framework now is considerable, but the final common pathway is arguably the NHS Standard Contract. Reflecting recent domestic legislative changes in recent governments, and of course the EU Procurement Directive, there is now express reference to innovative new contracting models, including lea provider, integrated provider hubs and alliance contracting.

At the one end, living better with dementia is a philosophy. At the other end, it involves a person with dementia and carer being ‘recipients’ of services. Alliance contracting is more suited for arranging the post-diagnostic care because of the less adversarial approach by multiple providers in arranging care, an ‘in it together’ modus operandi to meeting pre-determined outcomes, and sharing of risk and responsibility. Increasingly, there is recognition of outcomes and values, and standards, having to be met regardless of precise care setting. This might be, for example, in relation to functional outcomes, patient experience and view, or the external built environment.

I don’t think a medical model is the best way forward, but it’s utterly irrelevant what I feel. The starting point must be a reference group of people who’ve received a clinical diagnosis of dementia recently, whether that be in the younger or older age group, and finding out whether services following diagnosis met up to expectation. My gut instinct is that an annual check up in neurology or geriatric outpatients simply to report what cannot be done compared to the year before only serves as a demoralising experience, and fails to acknowledge what people can do (rather than what they cannot do). A clinic run only by clinical nursing specialists, social work practitioners and allied health practitioners is not some ‘money saving gimmick’. I feel it would be a far more effective way of organising post-diagnostic care in English dementia policy.

As in all other walks of life, the basics have to be done well, whoever does them. This means building up relationships from skilled practitioners and professionals, people who understand what happens in dementia, and what might be anticipated to happen. Of course, the wider environment is important, with people having inside knowledge of how the system works. Clinical nursing specialists understand the configuration of care pathways, and are in an ideal position to help with service reconfiguration, one feels.

Specialist nurses are very well versed in symptom control of long term conditions, and this has massive advantages, not only in leading a healthy active life (perhaps remaining in the workforce if desired), but also in avoiding places such as A&E. Knowing the best way to control symptoms is inevitably a specialist art, but one based on the up to date evidence base. They have a proven track record in coordination, communication and emotional support. They work extremely effectively with other practitioners and professionals, and take on a strong advocacy rôle on behalf of patients, acting as consultants to other members of the workforce too. They support carers in a number of ways, not least in emotional and psychological support. They furthermore have a pivotal rôle in education, training and practice development.

Large numbers of people with dementia, on the other hand, are admitted to hospital very year, and their experience can be poor both within the hospital and in trying to leave the hospital (delayed discharges).  Their needs as individuals are often very complex, many unmet ultimately by the hospital admission. However, the input of Admiral nurses in Southampton with people with dementia and carers at Southampton, for Medicine for Older People, has been very beneficial clinically, and cost-beneficial too, but notably as well as supporting the development and confidence of staff nursing individuals with complex needs. And the economic benefits in Southampton are clearly not a ‘one off’.  The current service provision of Age UK Admiral nurses in Norfolk is in its infancy and has already demonstrated that significant savings and benefits can be achieved by supporting families/carers of people with dementia.

But there needs to be a strong dialogue with the public. The public needs to be crystal clear about the advantages of such specialist nurses, say compared to a doctor. People need to have their information needs met about such a nursing service, and this needs to be ongoing. Information can be much hyped up in delivery of such a service, but it is very easy to understate its importance. This might include information in relation to budgetary considerations, setting up goals and action plans, information about peer and support groups, or information about self care and management.

Given the considerable co-morbidity of dementia, there is a rationale for tackling physical illness for people living with dementia. Arguably also tackling physical factors might prevent the rate of progression to disability in dementia too. Self care and management not only improves physical health outcomes, but inevitably helps with mental wellbeing, greater confidence and reducing ill being such as anxiety. None of this is of course to undermine a fully funded health service.

However, amongst this mass, the system needs to be flexible, and deliverable. There is no need which is ‘basic’, but people should be able to call on help with shopping, housework, dressing, companionship, and so on, as hoped in the full ethos of re-ablement. Clinical nursing specialists are already able to work successfully with certain agencies locally, for example Age UK. The NHS tries to inform about key national information choices with platforms such as NHS Choices. Increasingly they need to responsive to the exact ‘state’ of statutory services, and navigation through welfare instruments such as the personal independence payment.

It is impossible to escape the need for care coordination and overseeing progress in acute medical services. The Admiral DIRECT service was launched in 2007, as a national helpline and e-mail service, and has given comfort to thousands in offering specialist advice to people with dementia and carers. And care coordination is not fluffy stuff either. Advice might include medication reviews, referral to liaison services, or speedy discharge planning. There is a huge amount of care coordination and social care, too. The rôle of social care practitioners  in enabling and protecting in dementia policy is by no means to be underestimated in national dementia policy in England, having a pivotal function in the implementation of mental capacity and liberty safeguards.

Integration of health and care makes care coordination infinitely easier improving outcomes. The St John Care Admiral experience in Oxfordshire with 71 care homes has seen Admiral nursing knowledge and expertise valued. And attention has to be given to end of life, in coordinating care between earlier faces of dementia to later faces. Evidence currently suggets during their last 90 days of life, people are twice as likely to die at home and are much less likely to need emergency hospital care. End of life is of course part of the continuum of care, and in the philosophy of person-centred care should not be seen as an unexpected event. There has been much emphasis therefore on a ‘good way to die’, and integrated care for dementia must take account of this best practice.

Programmes such as the ‘year of care’ with proper NHS support are significant to explore what is required to effectively deliver personalised care and support planning. Typical benefits to people with long term conditions include involvement patients in decisions about their care, and giving patients better understanding of their condition. The benefits for the wellbeing of people with dementia would be enormous, if the NHS invested here, to drive quality in improved quality of life, and observable by fewer complaints and less inappropriate use of medication. Even with conditions with a strong wellbeing component, such as diabetes and frailty, such approaches can be validly criticised for being overly medical. This I feel would be a wrong lever to pull, an overly medical ‘year of care’ – but one which emphasised reablement and rehabilitation in a social model of disability, advancing rights based approaches, would be very welcome here. Such an approach should be naturally attractive to commissioners, particularly if people living with dementia are actively involved in co-producing the roll-out of this programme. This would, arguably, provide a stimulus to the whole healthcare community to redesign services for long term conditions, ensuring the right care is provided, in the right place, at the right time, by people with the right skills, with the right funding tools; and fit in with QIPP.

Many helpful care services can be arranged through the local authority social services department. How services are organised, and the kinds of services offered, differs from one local authority to the next. Social workers have specific training and qualifications, and it is crucial that national policy no longer wilfully neglects social care in delivery of dementia policy (which might be ‘attractive’ given the recent catastrophic cuts to social care budgets). Social care practitioners may be involved in assessing a person’s needs for services, and in planning, co-ordinating and advising on services. They work in a wide variety of settings, and are known by a variety of names. For example, some work as ‘personal assistants’ in the person’s home, or in care homes as ‘care workers’.

Of course, the financial considerations are overwhelming, and services need to be a strong financial footing to be delivered effectively. But for too long innovation has been used as a lazy meme by people who don’t really understand it, used simply as form of marketing, and do not understand the critical nature of the diffusion of innovations in making them work. The change required for post-diagnostic care and support and dementia is a root and branch one. But the fact that people are crying out for it, and actually know they will have to be willing to pay for it, needs to be factored in.

The views of people living better with dementia, and their closest ones, matter intensely

Shibley Rahman 0 Comments

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There’s been a long history of people having difficulty in saying what they mean by ‘integrated care’.

Such debates nearly always converge on difficulties and ‘sustainability’ of funding. In the narrowest sense, it probably means health and care coming together under operational constraints such as pooled budgets and care coordinators. In the wider sense, it probably refers to the notion of the health and wellbeing of a member of the public being determined by standards in health and care, but also in the wider environment, such as transport, leisure or housing.

I personally don’t feel we are all ‘patients’ all of the time, as this means for me we are subject to a medical intervention of some sort. To explain what I mean here, I am an alcoholic in recovery. I do not take any pills to keep me in recovery – it’s simply a way of life. That is my belief; that is my lived experience.

Recent news headlines have drawn attention to the drive towards overmedicalisation. Deborah Orr did an excellent piece on it, and Dr Aseem Malhotra has been determined in getting this the exposure it deserves.

There’s been some confusion about how hospital patients live with dementia, and it might be that a figure round 45% is at the upper end of the scale. There has nonetheless been a helpful scrutiny of the experience of people living with dementia in acute hospital settings, with an acknowledgement that enhancing health environments has a wider rôle to play. Acknowledging that individuals have distinct identities, and are not simply fodder for the NHS ‘patient flow machine’, through respect of their biographies, through life story has played a huge in changing the narrative.

I have been both a junior doctor and a patient, in fact in the same major teaching hospital in dementia in London. Ward rounds are fast, and constitute the ‘operational business’ of seeing the patient briefly armed with recent investigations. But they are in no sense of the word the doctor getting to know the patient. They’re a snapshot, in reference to what more has to be done on an admission, with a view to discharge. People with dementia end up in acute hospital for the most part not directly due to the dementia but due to a concomitant problem such as pneumonia or urinary sepsis.

‘Measuring the patient’ serves no function unless you actually want to listen carefully to, and not just ‘hear’, the experiences of people with dementia and their closest ones. That’s why it’s important to listen to people’s point of views; a carer might wish to accompany a person with dementia into hospital, and that person with dementia might want it too. And ‘views’ on a service are not the same as the ‘experience’. I know somebody’s experience of how he received the diagnosis of dementia in a busy outpatients’ clinic in a noisy environment – but I also know full well his view on it, and I’m pretty certain it has never been acted upon by his local NHS Trust to improve the service delivery. And there’s little appetite of Big Charity to want to use their research monies to investigate this.

And yet despite this, a person living with dementia is actually the expert in his dementia in his place and his time, and he’ll tell you that he is far more than his condition. It’s essential to provide an environment where people can talk about their views, beliefs, concerns and expectations in an un-rushed, unstructured way, so as to bring out the details of greatest importance or interest to patients using the NHS or people using the care services.

A huge amount of effort is put into the machinery of feedback for the NHS but my experience of buckets of complaint forms and incident forms which were simply filed in file 13. If a person with dementia feels that something has gone ‘right’, in other words he has received useful advice about design of his home environment, useful help on managing other health conditions, or felt that he is living in appropriate housing, such ‘good feedback’ should be harnessed. Admittedly, this is probably less common than complaints, but they all feed into a culture of improvement, and it’s essential that the workforce should have the values where they should wish to embrace improvements in health and care, for both research and service provision.

I believe strongly as someone who has trained in the law that rights are useless unless they acted upon. We shouldn’t be afraid to tackle poor care knowing what we know about equality and human rights through bodies such as the Equalities and Human Rights Commission, in, say, upholding dignity under a right to be free from degrading treatment. But likewise we can’t rely on the market to deliver this in a patchy piecemeal market – private providers also need support in understanding the picture. People do need support, and they do need to feel there is some immediacy about an appropriate action happening.

A big part of where things have gone wrong in certain areas of service provision or research, such as in diagnosis and post-diagnostic support of people from various ethnic groups, LBGT groups, people with longstanding intellectual difficulties, younger onset dementia, for example, is that the systems are not sufficiently flexible and do not have the capacity or resources to cope. Co-creating improvement in a spirit of partnership, not “bums on seats” on panels, must be the way forward here.

Ultimately, I want professionals, academics, commissioners, practitioners, amongst others to be able to say, “You said and we listened” from the lived experiences to inform on policy in dementia in England. Sadly, we still are a long way from that, but we’ve begun in the right direction I feel.

Living with dementia in care homes – not just ‘commissioning services’

Shibley Rahman 0 Comments

An organic transformative cultural change towards a sense of ‘working together’ will drive the development of care home services which are driven ultimately by the people who need them.

The population of residents in care and nursing homes can often too have diverse and complex cognitive and behavioural needs. The mental health of residents, such as depression, can often be totally ignored, however remains amenable to treatment from psychological therapy. And yet care can be fragmented and poorly co-ordinated. Critical to this is understanding people’s individual backgrounds, or life stories, and, it is of course a workforce planning issue that staff of all grades including student nurses are fully trained in such approaches.

Poor co-ordination of care between different care environments can be distressing for all involved, not least NHS patients and carers, and can unfortunately lead to a breakdown of trust and compassion. The NHS is currently aiming for a whole system, sustainable model of integrated care. For example, multidisciplinary ‘vanguards’ have been established linking GPs to community beds, i.e. care homes, aiming for personalised care plans, improving person experience and avoiding hospital admissions where desirable.

“In-reach” services mean that a patient might be now cared for at home, enhanced by improvements in telecare and other technology innovations. Looking for high quality outcomes, rather than merely commissioning for services, arguably has become very important, with care homes well placed to become ‘community hubs’, priming reablement or rehabilitation after secondary care, or offering support for carers in the community. Reablement is being increasingly viewed as an opportunity allowing independent outcomes-focused living in the short and long term.

Care homes have come under recent scrutiny, not only in terms of high profile regulatory issues, but also in a shift in emphasis from minimal compliance to high quality outcomes from regulators. There has also been a greater focus on the need for anti-discriminatory language, the need to acknowledge the social care and nursing perspectives, and the desire to improve wellbeing and quality of care. But ensuring quality of care needs close partnership with private and voluntary sectors, in the context of trenchant local financial pressures. Austerity can never be an excuse for cutting back from less visible caring needs, such as mouth care, which requires expertise and full attention.

It is all too easy to use the term ‘person centred care’ as the solution to all quality of life and quality of care concerns, but it is now fully acknowledged that meaningful activity and occupation, high value staffing, and protection against “risky threats” such as neglect and abuse are all essential in delivering good care homes. People living with dementia tend to have specialist needs, such as co-morbidities such as frailty, often experiencing loneliness after the point of diagnosis, and this necessitates co-commissioning approach.

Tragically, too, there is a shortfall in quality and quality of research in care homes. Previously, it had become a default option for some to call people with dementia as having challenging behaviours, and yet we do need better research in synthesising perspectives of residents themselves, relatives and staff. Existential issues, such as religiosity or spirituality, might exist in residents, and it must surely be ethical for care providers to identify these issues accurately. End of life care requires in a care homes requires a complete understanding of residents’ life experiences in ‘accepting’ being in a care home, and is inevitably a delicate balancing act involving the views of ‘significant others’. Finally, we need to have much greater definition on what can cause the problems in residential care; such as poor physical environments, polypharmacy, poor mobility, falls, and infections. But we further must take a balanced approach with authentic leadership.

With recent devolution of other responsibility to local areas, such as in housing or transport, but one which emphasises looking for outcomes rather than commissioning services, hopefully residential care will be characterised in England by autonomy and a rich diversity. It seems sensible for us to take stock about where we want a joined up approach involving care homes to head, even if it is the case that most of us would not want to start from here.

Why it is legal and medical illiteracy to sue your GP over a dementia diagnosis

Shibley Rahman 0 Comments

A recent article in Pulse magazine, entitled “GPs should be sued for ‘late’ dementia diagnoses, says professor”, claimed, “A leading academic has called for patients to sue GPs for failing to diagnose dementia, arguing that ‘the sooner someone sues a GP… the better’. Professor June Andrews, director of the Dementia Services Development Centre at the University of Stirling, made the comments in the Letters section of the London Review of Books, in which she said the ‘sooner someone sues a GP for failure to diagnose as early as possible, the better’.”

The full letter reads as follows:

LETTER STUB

If a doctor behaves in such a way so as to undermine clearly the medical profession, he could be suspended or struck off at worst by the General Medical Council on the grounds of not “working collaboratively with colleagues” under the code of conduct, “Good medical practice” (domain 3).

The particular subsection is rule 35, “You must work collaboratively with colleagues, respecting their skills and contributions.” June Andrews’ suggestion is offensive as it pits people against professionals in primary care, who are doing their best to practise medicine given the resources available to them.

I strongly commend to you the reply by Dr Margaret McCartney. There are about a hundred different types of dementia, not all presenting with memory problems (though Alzheimer’s disease, typified by problems in short-term learning and memory, in the beginning, is the most common type of dementia globally). Therefore, somebody may present with symptoms which are not easily recognised as a dementia. In the younger age group, the behavioural changes in frontotemporal dementia may be misdiagnosed, with no malintent, as depression or anxiety simply.

The issue that McCartney raises is a very important one. And yet it is reported that Andrews has had difficulty in discussing issues with professional colleagues in a sensible manner. Prof Sube Banerjee emphasised in a recent meeting of the King’s Fund, “Leading change in dementia diagnosis and support”, that dementia diagnoses in primary care had to be of correct quality, and professionals in primary care needed support in making these diagnoses. Banerjee further emphasised the considerable damage which might be done in given an incorrect diagnosis of dementia, to someone who did not have dementia. This has always been a risk with incentivising financially making the diagnosis of dementia as others have correctly pointed out, such as Dr Martin Brunet.

It might be that the symptoms do not progress and do not warrant a diagnosis of dementia in severity. The majority of such people with the diagnosis of “minimal cognitive impairment” do not progress to a full blown dementia, and such patients need to be monitored carefully with time.

Recent evidence on this is noteworthy (source above):

“The most compelling papers that concluded most MCI patients will never develop dementia include what are called “meta-analyses”, that is, they combined and reanalyzed the results from a number of different studies that the researchers considered to meet criteria for being well-designed and -executed.

For example, Mitchell and Shiri-Feshki (2009) analyzed 41 high-quality studies, some done on community populations and some in clinical trials.  They concluded that the annual conversion rate from MCI to a dementia is ~5-10%; and that even after 10 years, more than 60% of MCI patients will not progress to Alzheimer’s or any other dementia.  In fact, a substantial percentage actually revert to normal.  Other meta-analyses of long-term (5-10 years) studies reported even lower annual conversion rates, of 3.3 – 4.2%, and cumulative conversion rates of ~31% over 10 years.”

I have previously blogged myself on how the Wilson and Jungner WHO screening criteria may include case-finding, but the National Screening Committee, as McCartney points out, has consistently advised against screening in dementia for a number of years now (and last upheld in January 2015). The actual issues concerning when patients of the NHS decide to seek help over symptoms of dementia are complicated, and have often been investigated methodically. Such issues indicate the national ‘diagnosis gap’ for dementia is not simply due to General Practitioners ‘under-performing’.

All this raises the question of what the legal claim Andrews has in mind. As such, there is no direct contract between patient and doctor in primary care, for which the contractual term is that the doctor must make an accurate diagnosis of dementia immediately; such a claim would therefore be ‘breach of contract’. The claim, in the alternative, could be in the law of tort for breach of duty of care; this is ‘clinical negligence’. Such claims would have to satisfy the “Bolam” and “Bolitho” tests. They mostly would not, one might reasonably anticipate. In an unlikely case that a claim might be upheld, the civil procedure rules for litigation state clearly that the claimant must pursue other dispute resolution means first. This is according to the “pre action protocols” clearly stated under English law.

And how is the patient meant to fund such a claim? It has been widely reported that there has been no legal aid for medical negligence claims since April 2013. This is pursuant to the Government’s legislation the “Legal aid and sentencing and punishment of offenders Act“. In summary, Prof Andrews’ remark is neither held out by the standards of the legal or medical professions, and arguably should not have been made in a position of power.

All political ideologies, ranging from Edmund Burke or E.P. Thompson, do not condone abuse of power. Burke famously said, “The greater the power, the more dangerous the abuse.” It would thus be helpful if Andrews could withdraw her offensive remark, assuming the LRB have printed her letter correctly.

Whole-centred care for dementia

Shibley Rahman 0 Comments

Health and care need now to be fully integrated, for a number of reasons. There should be a parity of esteem, with mental health conditions such as depression not seen as of inferior importance to physical health conditions such as cancer.

Looking forward to 2015-20, I believe strongly England should head towards a ‘whole’ approach for the person with dementia; call it what you will, but it should be ‘whole-centred care’.

A focus on the person can take on a nuanced twang of individualism, and this lies uneasily with the context of a person within the community (thus far called ‘dementia friendly communities’, but more appropriately called ‘dementia inclusive communities’).

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At the point of diagnosis, one person is not the only person to be given the news. Closest ones are invariably involved. Some friends will drop by the wayside, but over a few years a person living with dementia will reach an equilibrated network of genuine close friends and/or family.

The person living with dementia will need personal relationships to optimise wellbeing. The immediate environment, the social determinants of health, such as housing, transport and education, I feel are vital to the dementia inclusive community.

But where England now needs to be is not simply person-centred – person-centred can too easily become activity-centred or task-centred for a particular person, without duly acknowledging what it is like to be that person (understood, for example, through ‘life story’).

It’s, though, impossible to ignore the detail of Tom Kitwood’s articulation of personhood in the seminal 1997 “Dementia Reconsidered”.

This way forward is not altogether family-centred or relationships-centred either, or environment-centred.

England needs to articulate now ‘whole-centred care‘ for dementia.

And we need to give careful consideration to the parties we’re trying to help.

For example, there’s a case for clinical nursing specialists who can deal with the more subtle medical points which might prevent a person with dementia going into hospital. This point about avoidable admissions, as entering hospital can be a cause of both morbidity and mortality for a person living with dementia.

Effort into the design of the wards, or trained staff, is time well spent for hospital care, given the large numbers of adults in the acute general medical and surgical admissions daily.

But there’s also a case for some people, invariably unpaid family members in a care and/or support rôle, to have support for their resilience in mental health: such caring people invariably find their rôle deeply rewarding, but many find themselves with financial, social and psychological pressures of their own. They therefore need help with coping strategies sometimes, and their quality of life has a direct effect on the quality of life of people living with dementia.

Inability to deal effectively and conservatively with issues such as mobility, falls or incontinence might lead to a person with dementia heading towards a nursing home when he or she had not intended that fork in the decision tree. A clinical nursing specialist is expected to have a beneficial impact here, above that of a ‘dementia advisor’.

Such a rôle might be suitable conceivably for a psychiatric nurse who can cope with work both in hospitals and the community, who is able to take on a proactive case management load. But such nurses themselves have education and training requirements, and need help with making sure that they do not over commit themselves in work.

There is nobody more important in dementia care than the person living with dementia. That’s why it is crucial that all systems for service provision and research programmes are designed in the most part by these stakeholders themselves.

‘Professionals’ should not be abusing the power dynamics by using language, such as ‘challenging behaviour’, ‘wandering’, or chemicals, such as antipsychotics, inappropriately. Use of antipsychotics under the law inappropriately without consent might fulfil the definition of common assault in many jurisdictions.

But physicians and psychiatrists do have a rôle to play, but only if it is a transparent one. There should be no lying about the claims about existing drugs: cholinesterase inhibitors might improve symptoms for some for a limited time window, but are not considered to slow down progression according to the current evidence base.

Medications do have a role. For example, some patients with diffuse lewy Body dementia are best off not being prescribed certain types of medications, and may draw considerable benefit from being treated by others for some particular symptoms. But here medics have to be extremely careful about not pathologising behaviour pejoratively. Easily done.

For a person with dementia with complicated speech understanding and production issues, somebody with speech and language training might be able to advise on how best not to distress a person with a complex language problem – this might include careful repetition of some words (if there is a concomitant short term memory problem), or avoidance of complex sentence structures.

Social care practitioners are also at the heart of dementia care provision. They have an unique dual role in enabling and protecting people’s interests; but you do need to engage with risk to live well, and advice here is crucial. Social care practitioners have an unique combination of relevant skills, such as working with people professionally, understanding of legal issues – possibly with the help of legal professionals – such as equality, fairness and justice, or social science research methods. But I don’t want to leave this area by painting a misleading rosy picture – social care funding has been on its knees, having not been ringfenced since 2010.

At the moment, it’s simply not good enough to have people signposted to various services with services being decimated. While awareness from initiatives such as ‘Dementia Friends’ is undoubtedly to be welcomed, what we actually need is education, and this includes in the workforce itself.

We fundamentally need a rejigging of the health and care services, with prevention of bad health a top priority too. The system needs to be reoriented from fixing illness (but be able to do it when required), and more towards proactive forward-looking care. Many people find themselves totally lost in the system, not knowing what employment or welfare solutions (as well as health and care solutions), are available; a ‘whole person’ approach needs to be a central issue now.

It is now imperative to recognise that people with dementia have rights. This rights-based approach has a legal substrate. With recognition of instruments such as the UN Convention on People with Disabilities, we can force a rethink of what we understand by capacity. While there is a reasonable legal rationale for capacity in protection of parties, too often capacity is weaponised against the person living with dementia. This abuse has got to stop – the assumption in law, though, is that everyone has capacity until proven otherwise.

Whichever way you look at it, to survive, and for services to work well for the benefit of people living with dementia and their closest, there needs to be a flexible and adaptable approach, which places huge public value on stakeholder involvement. This is not simply a dry economic argument, it’s a social imperative for all of society – but better health, provided in a non-fragmented way, can help with the formidable budgetary constraints of the NHS in future.

On that note, it’s now further impossible to ignore that organisations such as the Dementia Alliance International, composed of and representing views of people living with dementia, will now have to be central to all discussions.

 

 

 

 

A single cure is not the only hope for living better with dementia

Shibley Rahman 0 Comments

Many people living with dementia, having been told to expect the worst sometimes from some professionals, find themselves surprised when they’ve found they’ve met some nice people after diagnosis, and learnt new things.

And guess what?

You do not have to be religious to have hopes. Addressing emotional and physical needs are important for meeting hopes. If we talk about ‘burden’ all the time, we see the price and cost of everything and the value of nothing, to lean on a saying from Oscar Wilde. But, seriously, if you have problems with engaging with the notion of ‘hope’, pretend temporarily it’s “quality improvement”.

Hopes have to be meaningful. A hope for a better life cannot mean somebody inflicting on you ‘bingo’ or activities unless you happen to be interested in those activities in that particular time or place.

Hope might be wanting friends and family to be with you following a diagnosis of probable dementia.

Hope might be being inspired by people you respect. Here are Helga Rohra, Chair of the European Persons with Dementia group for @AlzheimerEurope, and Chris Roberts, Board Member of Dementia Alliance International (and Dementia Friends Champion, for example), who both live with dementia and spoke last week at the ADI international conference.

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People’s hopes differ, but finding out what people’s hopes are is important.  To be valued, whether in employment or not, or in a loving relationship, is surely essential.

We recently stayed with Kate Swaffer, Pete and Boris up in Adelaide hills. I commend to you Kate’s recent post on living well with dementia, which concluded as follows:

“Feel free to call yourself or your loved one with dementia a sufferer, privately. It is disrespectful to feel so free to publicly label all of us living with dementia as sufferers. It seems unreasonable to me, that others get upset that some of us feel like we can live well or better, even with dementia. And this does not mean there are not many times where we do suffer, but to always label us all in that way, as if that is the experience of everyone, is unfair and disrespectful. Let those of us wanting to, live with enablement and hope.”

Life is complicated and unpredictable. I’ve long felt that anything can happen at any time.

I have real concerns about clinicians pinning all hope on a “cure”. A cure might bring hope, if properly defined; but we have to be able to say what a cure might look like, for whom. But there is no doubt that a cure perhaps to stop the build up any causative toxic agents in dementia in the brain would be great if appropriately timed, and if safe, and collaboration I feel is a ‘must’ for this hope to have lift off.

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Moving the target from the “cure” to give people hope living with dementia, whichever one of the hundred of dementias that is, is not “giving up”. It is a fundamental reshifting of the narrative from the ‘managed decline’ philosophy of ‘prescribed disengagement‘ (as described by Kate Swaffer) to a genuine attempt to meet people’s beliefs, concerns and expectations.

An expectation might be for an employer to be sympathetic that a person who has just received a diagnosis of dementia is not wildly different to how he or she was just a few days ago.

That is, corporates, resources permitting, should be able to embrace ‘thought diversity’, and find a rôle for an employee which is most suited to someone’s cognitive abilities.

This is the fundamental aim of rehabilitation, and using an understanding of disAbilities to give control to people’s lives.

This is what I encountered many times in the Alzheimer’s Disease International conference last week at Perth, Western Australia, in discussions of “agency”. Mick Carmody is a person living with dementia from Queensland, Western Australia, who I have seen first hand to have benefitting hugely from encouragement from the Dementia Alliance International, a group of people living with dementia.

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With many people with dementia facing an incomplete recollection of events, sometimes relating to himself or herself, facing the future can of course be demanding.

Fear is a historic theme.

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But in the place of fear, some tentative plans can be made.

I spent this morning chatting with Prof Olivier Piquet at NeuRA here in Sydney, Australia.

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Olivier happens to be known well to two colleagues of mine, Prof John Hodges and Prof Facundo Manes who wrote Forewords to my first book, “Living well with dementia”. Olivier explained to me a tranche of his research on the cognitive decisions involved in making plans for the future, whether or not demanding an assessment of risk.

I was familiar with this from another context: a failure to anticipate future outcomes from making dodgy decisions, which is what can happen following problems with the anterior part of the frontal lobe, at the very front of your brain. Of course, living life to the full involves some risk, whether or not you live with dementia.

I live in hope of certain changes to be made in world policy: that is a shift from ‘dementia friendly communities’ to ‘dementia inclusive communities’, for reasons I have recently described. The term ‘friendly’, with good intentions, oversteps the boundary concerning “otherness” for me.

But here Alzheimer Australia and the UK Alzheimer’s Society, for example, have made massive inroads I feel.

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I personally derive hope from the people around me. I have double vision and am physically disabled, and in recovery from alcoholism, but I do not see myself as a ‘sufferer’.

Alice is ‘Still Alice’, and Richard is ‘Still Richard’.

Richard Taylor: I’m Still Richard from Dementia Mentors on Vimeo.

I have just spent two weeks in the company of the most wonderful people I have ever met, in fact.

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Dementia Inclusive Communities. Are we there yet?

Shibley Rahman 0 Comments

“Today’s local communities are strongest when they enable all, diverse citizens to participate socially, economically and politically. These inclusive communities have better health, improved economic development, stronger political institutions and more effective public services. One in 5 of us is living with a health condition or disability. Economic recovery and social well-being cannot happen without inclusion.”

Hold on a second, this sounds like ‘dementia friendly communities’ doesn’t it?  It’s actually the beginning of the description of ‘inclusive communities‘ on the Disability Rights UK webpage.

 

The most parsimonious explanation for the word ‘friendly’ in “dementia friendly communities” is that dementia friendly communities accommodate the idea of ‘friends’ – people who are sympathetic to what dementia is (or what the dementias are), and have a basic understanding enough to encourage more inclusion.

 

It is, of course, possible to have leaders without followers, as such. In that sense, can you have ‘dementia friendly communities’ without friends? In a way, the discussion is somewhat academic, in that the UK through various converging means has achieved an ‘ambition’ of one million friends by the intended time (March 2015). It, in a sense, depends on whether you define ‘friends’ in UK as people who’ve done the ‘Dementia Friends’ programme in some form; or whether they are sympathetic to the aims of the programme, raising awareness of dementia and turning communication into action, through some other way.

 

Why do we need a million people, or more, to be “friendly”? As Helga Rohra remarks, “why don’t we treat everyone with respect?” Respect, as Kate Swaffer observes, should mean “real respect” about seeing the person living with dementia, not simply the symptoms. But taking it literally – one supposes that “dementia friendly communities” are communities, howeverso defined as a street, an entire village or whole city, which has achieved ‘dementia friendliness’, such as dementia-friendly buses, dementia-friendly buses, or dementia-friendly banks.

 

And, in this transactional society as a whole, “dementia friendly communities” can be postulated to have a number of beneficiaries, the recipients of friendliness, the people being friendly, and possibly the people promoting the idea (including charities). I published my blogpost “It’s time we talked about ‘dementia friendly communities'” in March 2014, and I don’t think my views have fundamentally changed since then. At the time, indeed, I referred to ‘inclusive communities’.

 

The problem is: I can still be friendly to you even if I strongly dislike you. More’s the point, I can be friendly without being inclusive. ‘Inclusive’ better reflects intergenerational aspects of the dialogue about living with dementia, and the issue that people living with dementia have different living well, timely diagnosis and service provision needs. It also reflects that people living with dementia are often living with a plethora of medical issues, e.g. arthritis, which might also limit their involvement with the community e.g. taking a bus.

 

It’s possible to have friendliness even in face of outright division and opposition. And it is possible to take friendliness to an extreme, encouraging a sense of victimhood within a person who happens to have received a diagnosis of dementia.

 

Helga Rohra, a leading campaigner living with lewy Body dementia, in her plenary for the ADI conference last week, remarked to a small ripple of spontaneous applause, “I do not want to be a victim of dementia, but I want to be a victor of dementia.”

 

My thoughts on this converged after the recent Alzheimer’s Disease International (ADI) conference last week, where I asked Chris Roberts’ daughter whether she felt the word describing a community’s attitude towards Chris, should be “friendly”. She paused, and said, “No”. And this matters hugely – as when a person is diagnosed with dementia, invariably the diagnosis affects the friends and that family of that person. That person is at that point at risk of social isolation, which any policy of ‘friendliness’ must mitigate against as one of its key aims.

 

I asked Chris. Chris too said “no”. I then asked Chris what might be a better word, and he suggested “inclusive”. I further asked Kate Swaffer, and she said “accessible”.

 

And “inclusive” and “accessible” are certainly constructs which go together happily, for example in the field of urban design of built environments, or ease of shopping or use of transport. Chris Roberts, Helga Rohra and Kate Swaffer had both referred to their lived experience post diagnosis of dementia last week. They all independently described their wish to be included in every conversation.

 

Dr Jess Baker included the term ‘inclusive dementia-friendly communities’, raising the possibility that dementia friendly communities could theoretically be non-inclusive.

Both inclusivity and accessibility both promote a sense of identity of the person accepted by the immediate world around him or her, and promote autonomy and dignity. People who have received the diagnosis of dementia are still the same persons they were before their diagnoses. ‘Alice’ is ‘Still Alice’ for example. Younger people who’ve received a diagnosis need to be kept fully integrated in society, including employment if so desired, shifting the debate from “cost” and “burden” to “value”; with coherent pathways of care and/or support.

 

Are we in a better place than previous to where we were before the 2012 UK Prime Minister’s Dementia Challenge, as regards the ‘consumer experience’ of those living with dementia? I think the answer is almost certainly yes, though one would have to ask the various consumer groups around the world. We need to keep momentum up, and make sure that we do not retreat from the massive progress which has been made.

 

I feel now there has been a critical momentum building up, and now is the right time to crystallise “dementia friendly communities” as “dementia inclusive communities”.

 

Dementia Alliance International provides “a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life”. Kate Swaffer, Co-Chair of the Dementia Alliance International, a large international group of people living with dementia, working now closely with Alzheimer’s Disease International to give people with dementia an enhanced platform, further emphasised the need for rehabilitation for people living with dementia. Such a perspective necessitates viewing dementia as a ‘disAbility’ (dementia fulfills the definition of disability in international law); the counterfactual therefore needs to be enabling of people with dementia through the dementia inclusive community.

 

The current legal frameworks in England for equality (2010) and human rights (2010), both internationally and nationally, pre-existed the UK Prime Minister’s Dementia Challenge (2012) by only a few years. The ‘genie is out of the bottle’, I feel, making it very difficult to backtrack on this seismic shift in policy. As Glenn Rees, now Chair of the ADI says, policy is strongest which evidence is blended with the actual views and commitment of consumers.

 

Possibly dementia is now reaching a place where sex equality and disability were, but I feel the term ‘dementia friendly community’ is rather anaemic in the absence of a legal underpinning.

 

But how will know whether ‘dementia inclusive communities’ are getting anywhere? We will see more signs of inclusivity and accessibility, say in banks, transport or the built environment. Less easy to define is when societal attitudes have changed. Standards such as the recent British kitemark for dementia friendly communities help to deter people who can say ‘job done’ with a ‘dementia friendly’ sticker.

 

Although a right to offend is legally possible, anti-segregation has been quite possible to legislate upon. Changes in South African law made Apartheid impossible, whatever the current opinions of people living today. At worst, I’ve heard a handful of people living with dementia describing their experience of society’s attitude towards them as ‘social apartheid’, and this separation is easier to maintain with demonising terms in reference to dementia.

 

That’s why we do need media guidelines for the general media, in talking about dementia. That’s why we do need to recognise the diversity of all people living with dementia in public. And we do need to see them included at the very highest levels of policy even, not simply in a tokenistic way.

 

As Kate Swaffer said last week at the ADI Conference, “It’s going to take a lot of courage for us to work together.” Indeed, Kate at the 2015 ADI conference advised a few key steps in establishing dementia inclusive commitments, such as raising education, promoting volunteering, advancement of dementia advisory groups and local dementia action alliances, and meaningful engagement of people living with dementia; and for this all to happen from the very first step.

 

All this, of course, is not to poo-poo the massive achievements that have been achieved so far, not least in the progress of the Dementia Alliance International’, but we are – regrettably – ‘not there yet’.

 

 

 

 

 

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

Shibley Rahman 0 Comments

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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.

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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.

“Alive inside: the story of music and memory”. A film screening in Brighton on March 20th.

Shibley Rahman 0 Comments

I always tell anyone I can meet, “Anything can happen to anyone at any time”.  I believe in persons not patients; I believe in looking at what people can do rather than what people cannot do; I believe repair is important, but so is care.

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Don’t let anyone fool you into thinking that the human brain is anything other than complex. There’s about 1 000 000 000 000 000 different nerve cells, some of which are connected w’ith other, but some aren’t.

“Alive inside: the  story of music and memory” is a film which charts a one-man mission of Dan Cohen to bring music to residents of residential nursing homes.

I am honoured to have been invited yesterday to introduce this film at St George’s Church, Brighton, to an audience of about 100-120 members of the community.

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I am truly grateful to Lucy Frost, a clinical nursing specialist in Brighton, and Rachel Mortimer, from “Engage and Create”, a social enterprise which promotes wellbeing in an evidence-based way.

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Music is a remarkable cultural phenomenon. Whatever side of your political fence, it’s true that the whole is more than the sum of the individual parts.

Music, as correctly observed by Prof Oliver Sacks, is in an unique position to involve numerous distributed neuronal networks involved in auditory perception, emotions, and attention. But what is also special about music is that it can raise powerful personal emotions, including ‘chills’ down your spine, and can compel you into voluntary movement and coordination.

Furthermore, it can bring back powerful personal memories from your autobiography. It is not uncommon for someone to tell you that they can vividly recollect the first time they heard a particular song.

Henry in his 90s, in a nursing home in a slumped posture in a chair, becomes ‘awakened’ when he hears music. But the remarkable thing is that this phenomenon is replicable.

I don’t feel ‘awakening’ is a hyperbolic word to use in this context.

I remember when I would put a horizontal cane in front of a person with Wilson’s disease, a rare copper metabolism problem; and who was ‘stuck’ in movement, like someone with Parkinson’s disease. The year was 1998, and the city was Warsaw as I was doing a study on cognition for my Ph.D.

This is reminiscent of the ‘Awakenings’ captured later in the famous film to do with the magical effect of a dopamine chemical medication on people with Parkinson’s disease symptoms, as following the outbreak of encephalitis lethargica.

Medical breakthroughs always come from the weirdest of places.

I think unlocking movement through a physical obstacle is akin to unlocking thinking through music.

In other words, I think the human brain responds well to external triggers when it cannot generate the computer program itself. I think the human brain has a form of human metronome which enables this response to physical obstacles and music in different contexts.

The late (and great) Prof Sir Richard Doll, after a lecture at Cambridge, said to me how he’d been told that, “serendipity is like looking for a needle in a haystack, and finding the farmer’s daughter.”

Numerous previous research studies have showed that your wellbeing is improved if you improve the wellbeing of others. Also, the effect of the musical ‘intervention’ is quite longlasting, in improving someone’s quality of life, or enhancing temporarily memory.

In this target-driven culture, where all outcomes have to be identified in meticulous detail, it is quite remarkable that music used this way has very few risks (e.g. it does not cause physical disease, it is not intensely costly if you have an inexpensive mp3 player which has relevant playlists.)

I managed to do a bit of ‘product placement’ for my own iPod Nano, even.

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And the potential benefits are enormous. Historically, it has been far too easy for certain professionals to abuse their power to prescribe antipsychotic medications as a ‘chemical cosh’ to “turn off” residents with dementia in homes.

The whole project forces us to justify whether the money put into prescribing medications which often very have modest effects on cognition and wellbeing, and have no proven effect on disease progression, is justified.

If Pharma did not have such a policy strangehold through corporate and regulatory capture, social prescribing, where doctors could prescribe a mp3 player, would be the norm not the exception. “Nesta”, the innovation hothouse, found in their report that most people want it but most people aren’t offered it.

As Kate Swaffer, Co-Chair of the ‘Dementia Alliance International’, a peak body representing people with dementia, emphasised last week addressing dignatories in Geneva for the World Health Organization, we need more effort to be put into research into living well with dementia.

“It is possible to live well with dementia” is in a way the first amendment of the Alzheimer’s Disease International. Bringing music back into some people’s lives might be a good start.

I was much more open about where I thought our English dementia policy has gone wrong, in a small pub in Brighton round the corner from the venue. Elated by my Diet Pepsi, I explained how we could be in a better place – but that’s for another day.

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