Month: March 2014

Chris Roberts’ plan to set up a dementia café: persons with dementia driving decision-making

Shibley Rahman 2 Comments

There’s been a persistent concern amongst many academics and amongst many persons with dementia themselves that persons with dementia are not at the heart of decision-making in dementia-friendly communities.

The notion of ‘no dementia about me without me’ has not been rigorously applied to dementia-friendly communities, with directors of strategy in corporates seeking to consider how to make their organisations dementia-friendly as part of a corporate social responsibility or marketing strategy.

Such directors are obviously fluent in how to present such a strategy as elegant marketing, to secure competitive advantage, to make money, so it makes absolute sense for them.

It also makes sense for the Department of Health and the Alzheimer’s Society, who are seeing through the policy of ‘Dementia Friends’ through a sustainable financial arrangement, to see this policy plank politically flourish. With every single newspaper article on dementia now mentioning ‘Dementia Friends’, it is hard to see how this campaign cannot succeed.

Norman McNamara, an individual campaigning successfully and living with dementia of Lewy Body type, reported yesterday on Facebook local success around the Brixham community area.

Brixham

Chris Roberts, another person in his 50s living with a dementia, also mooted the idea of setting up cafés himself.

“Since being diagnosed, i’ve noticed that there isn’t a lot for people in the mild to moderate stage. There are dementia cafes of course, but these seem to suit carers more than the people with dementia, we just sit there smiling when looked at while our carers and spouses chat away to each other, sharing there experiences and so on.”

“There are 100s of thousands of us in the same positition with nowhere to go or nowhere to be left! We could popin for an hour or for the day. We could practically run the place our selves, some where we could chat and share, watch tv, play cards, draw , we would arrange our own activities not led by someone who thinks they know what we want!”

“Yes we can live with dementia, yes we could even live well ! Yes we could live even better !”

The “living well with dementia” philosophy is all about enabling people to pursue what they can do rather what they cannot do. There’s a chapter on activities in my thesis on living well with dementia, reflecting the fact that activities are not only promoted in the current National Dementia Strategy but also in NICE Quality Standard 30 ‘Supporting people living with dementia’.

The National Dementia Strategy makes reference to such activities being ‘purposeful‘:

Section

And this gets away from the concept of persons with dementia sitting around calmly doing knitting when they might have been, for example, proficient motorcycle bikers:

comments

When one criticises that persons with dementia are often not at the heart of decision-making, these days I get a standard reply saying, ‘we always take serious note of the opinions of people with dementia; in fact there are two representatives on our board.’

Yet personal feedback which I receive is that persons with dementia resent this “tokenism”.

Having persons with dementia at the heart of decision-making I feel is important in the campaign to overcome stigma and discrimination against persons living with dementia. Persons with dementia running businesses of their own dispels the notion that persons with dementia are incapable of doing anything at all.

As a Fellow of the RSA, I intend to apply for a RSA Catalyst grant, as well as to the Wellcome Trust (who funded my own Ph.D. in decision-making in dementia fewer than 15 years ago now), to investigate collective decision by people in earlier stages of living with dementia to see how they in fact shape their community.

I am hoping that this will be in the context of their ongoing research work with the RSA Social Brain project, and I am hoping to hear from other Fellows about their work there, shortly. I will be putting my grant in with various people who are genuinely interested in this project.

Living well with dementia – lessons for ‘whole person care’

Shibley Rahman 2 Comments

There were of course huge structural problems in the much heralded Oldham report on whole person care was published this week.

It’s officially called ‘One Person, One Team, One System‘.

These structural problems are, not least, to what extent will the NHS be paid for out of general taxation in the long term. The issue is not fudged altogether, in that Oldham calls for a future government to look into this as a priority.

Nonetheless, the Oldham Commission does fudge the issue of how much integrated and social care systems can rely on private not state provision. This is a strange ‘elephant in the room’, given the emphasis of the report on individualised budgets (call them what you will, personal budgets or personal care budgets).

Oldham does however concede helpfully that ‘financial arrangements in the adult social care system are equally fragmented, with complex and overlapping funding and provision arrangements between private and public funding sources, and private and public providers of care. The multitude of private care providers adds to this complexity.’

The need to repeal section 75 Health and Social Care Act is pivotal to all this. In fact, a repeal of the whole Act, as Labour (as Andy Burnham and Ed Miliband have indeed promised), would be helpful. This is, quite simply, because legally integration might offend the competition legal infrastructure established by section 75 and its associated Regulations, and of course sit uneasily with EU competition law.

At the moment, the NHS and social care services are geared up to ‘reacting to events’. And this is reflected in the payment by results mechanism (a reincarnation of ‘activity based costing’).

“Public funding has increasingly focused on those with greatest needs – particularly as rationing of care has become more severe – driven by a reactive, crises oriented approach rather than a focus on early intervention and wellbeing.”

Wellbeing is of course not just the opposite of illbeing, though lessons can be learnt from poor hydration and nutrition, for example, in individuals with advanced dementia.

The Oldham Commission view health and wellbeing boards as a vehicle for collective system leadership for whole person care,” involving the leaders of existing organisations working together to coordinate care and align incentives across their geography.” And therefore it is critically important that they are fluent in what wellbeing is, and how to promote it. This is especially important for dementia, but I would say that wouldn’t I.

Information is obviously vital in decision-making along a path to wellbeing however defined. I, in fact, devote a whole chapter to decision-making in my book ‘Living well with dementia’.

Decision making flowchart

The exact mechanism of integration of voluntary organisations and health and care services to provide a combination of medical and non-medical support as part of the care pathway for older people living with multiple long term conditions needs of course to be put under greater scrutiny.

The ‘deal‘ between the Department of Health and the Alzheimer’s Society in promoting ‘Dementia Friends’ is of course welcome in promoting awareness of dementia. But we do need to be careful that, firstly, other dementia charities do not suffer in a ‘zero sum gain’ manner. Secondly, we need to be doubly sure that charities are not expected to pick up any shortfall in state provided services. Already there’s valid criticism of the way in which private companies can legitimately ‘cherry pick’ services to maximise their shareholder dividend.

Oldham’s group is right to refer to “a strong evidence base now exists to target key risks to health independence and wellbeing in old age.” Clearly there’s a balance to be struck between independence through assistive technologies perhaps of persons living with dementia in their own homes, and social inclusion with other persons face-to-face. Online communities offer great value for persons with dementia nonetheless.

Oldham’s team also helpfully reviews how Preventive aspects of whole person care must therefore pay attention to environmental factors. The emphasis in the Report is on diet, but this is valid too for dementias in the context of vascular dementias. Vascular dementias are common in older age groups, and certainly medical professionals, dieticians and others are keen at considering cholesterol and diet, and their interaction with other factor such as smoking.

Therefore, one of the conclusions is that, “Whole person care should not only include joining up services …”

It is inescapable that whole person care should include ‘joined up services’. Data sharing different disciplines, despite the concerns about #caredata, needs to involve a more effective dialogue with the general public, one expects.

The report also picks up on a number of other important issues.

One is the possible interaction with benefits. People with disabilities, for example, are right to wonder if benefits might be taken away if the system drives towards ‘whole person care’. On the other hand, it does not perhaps make intuitive sense for the care and benefits situation to work in isolation?

This is of course an intense political quagmire, given ATOS’ role in both the GP extraction scheme and the implementation of the much criticised disability and employment benefits.

Also, it turns out that 70% of people over 75 live with a major long term condition and a quarter live with two or more. Many persons living with dementia also live with otherconditions.

Furthermore, the Report notes that, “in all groups in society, housing has a large impact on people’s health and wellbeing.” As perhaps care embraces personhood in the true meaning of Kitwood or otherwise, the influences of other people in society, such as housing or the criminal justice system to name but a few, may become apparent.

But what the State is by that stage is anyone’s guess. In the meantime, the Oldham Report is fully consistent with my book ‘Living well with dementia’.

I had expected this to be the case. In fact, there’s a paragraph on whole person care in my book.

Let’s have a honest debate about whether off-the-shelf packages ‘bestow’ personhood

Shibley Rahman 3 Comments

We are continually being reminded that ‘money does not grown on trees’. Funds are said to be ‘unsustainable’. You’ve heard it all before.

And yet there is potentially a scanty evidence base for certain initiatives in the NHS, where every penny does count. For every contract awarded, there’s an equal and opposite contract which has not been awarded. Recent problems in health policy to do with the English NHS shows a genuine problem with trust, whether it’s implementation of the Health and Social Care Act (2012) or “Care Data”.

As entities get bigger, their presentation tends to get slicker. With economies of scale, things can be done more ‘efficiently’. The overwhelming danger is that everything becomes alarmingly centralised, actually deprofessionalising and lowering standards of what is being delivered. It can become all too easy to run courses, get the facilitator to run the DVD and read a pre-prepared script, and, even if the end-user doesn’t pay for it, the taxpayer does.

But the culture in the NHS is not right. People are scared to ‘speak out safely’ against practices which they do not agree with, even if the reasons are perfectly sound. The pattern of behaviour at people who have criticised, with good intentions, in healthcare has tended to follow a similar pattern: ignore – discredit – attack – ignore – ostracise. But increasingly as the same grant winners tend to get more grants, as they built up a dominant presence and brand loyalty, they are in a position to flex litiginous muscles.

It all has an “Emperor’s New Clothes” feel about it. “The Emperor’s New Clothes” is a famous short story by Hans Christian Andersen about two weavers who promise an Emperor a new suit of clothes that is invisible to those unfit for their positions, stupid, or incompetent. When the Emperor parades before his subjects in his new clothes, a child cries out, “But he isn’t wearing anything at all!” And that’s the position we’ve reached with various prestigious brand leaders.

And yet it is fundamentally an anethema to the whole basis of personhood as conceptualised by Tom Kitwood. There is an increasing army of people who are quite horrified, like me, how personhood has become transformed into marketing shills and glossies in a standardised package corporate-feeling sort-of-way.

There’s certainly concern about how dementia training and person-centred approaches have become commercialised, in a way that would have made the late great Tom Kitwood shudder.

Kitwood’s approach was more conceptually and theoretically developed, and highlights the importance of the person with dementia rather than the disease process itself. Kitwood argues that people with dementia do not lose their personhood, but rather can be maintained through relationships with other people.

Thus, Kitwood defines personhood as ‘a standing or a status that is bestowed on one human being, by another in the context of relationship and social being’. Within person-centred care therefore, the personal and social identity of a person with dementia arises out of what is said and done with them.

In other words, it IS highly personal and individual.

Anyone who has worked in the NHS knows likewise that one junior doctor covering all the medical wards in a hospital and acute admissions is bound to be rushed off his or her feet. Any emergency room nurse facing the common situation of being ten patients behind will know exactly how stressful the job is, propelled by ‘efficiency savings’ the NHS “MUST” make to resolve the “funding gap”.

A concerning strand has emerged therefore of marketising and selling compassion. This is a very strange concept as it implies that compassion in some way can be “imposed”.

In October 2013, it was mooted that  unregistered care support workers wouldsoon have to obtain a “care certificate” to show they have completed basic training before they are allowed to work unsupervised, the government has announced.

Health minister Earl Howe has revealed that Health Education England would lead work on developing a certificate of fundamental care, as recommended by Camilla Cavendish in her review of regulation and training in the sector earlier this year.

He said it was too early to know what the care certificate would look like, but said it would build on the national minimum training standards published by Skills for Care and Skills for Health in March, as Cavendish recommended.

This policy plank is incredibly difficult, for fear that the implication is that certain care staff are deliberately ‘withholding’ compassion. But it is patently more of a problem that junior care and nursing staff are in certain cultures finding it very difficult to speak out against unsafe levels of staffing cuts (a common strand in the dangerous ‘Keogh trusts’.)

The way some commissioners are tending to behave is fair-and-square a ‘tick box’ culture. What are we doing today?

“C” for compassion

And “D” for dementia friendly communities.

A Dementia Friends Champion is a volunteer who encourages others to make a positive difference to people living with dementia in their community. They do this by giving them information about the personal impact of dementia, and what they can do to help.

It is not supposed to be specialist in training for dementia.

But it can be argued that the whole set-up of Dementia Friends and Dementia Champions gives their organisers an advantage. It must have a business model somewhere, and presumably the Alzheimer’s Society is working with the current Government to deliver this initiative? Virtually every newspaper article about dementia these days mentions ‘Dementia Friends’. Parliamentarians mention it. And yet there is no mention of other dementia societies, such as Alzheimer’s BRACE or Dementia UK. For every penny in one direction, a penny is lost in another direction.

A strange phenomenon is that you don’t need to have any particular experience or skillset to be a Dementia Friends Champion.

This level of standardised packaging of ‘a training’  therefore has two inherent problems. Firstly, it denies the whole ethos of Kitwood’s bestowment of personhood. Secondly, it lends itself too easily to a ‘tick box’ culture from commissioners who can say ‘they’ve done dementia’ in a race to the bottom. And people who’ve done the Dementia Friends often report a dubious relationship about whether it is or it is not the Alzheimer’s Society, parking aside the statement that “Dementia Friends is an Alzheimer’s Society” initiative at the bottom of the ‘Dementia Friends’ website.

If a charity is being supported by Government in delivering the Dementia Challenge, this should be made much much clearer. This is because the charity ‘market’ is itself being distorted. And furthermore with access to the media commercial endorsements can deprive others of media attention, while ‘picking winners’.

The Alzheimer’s Society website reports:

“Our high streets are set to become more dementia friendly following a commitment from major British businesses today (Friday 28 February).

Our high streets are set to become more dementia friendly following a commitment from major British businesses today (Friday 28 February). Argos, Homebase, Marks and Spencer, Lloyds Pharmacy and Lloyds Banking Group, backed by Health Secretary Jeremy Hunt, have committed to create over 190,000 Dementia Friends in shops and banks across the UK.”

Certainly the staff at the Alzheimer’s Society are brilliant, and totally devoted to the cause.

This was Ian McCreath today.

and this emphasising that ‘Dementia Friends’ like the NHS is ‘free at the point of use':

Apparently the intention is that “Dementia Friends” is not ‘training’ as such:

But there is unfortunately a perception of “training” from two separate sources:

and they weren’t the only ones:-

but this is also true it turns out in terms of where the money is actually coming from:

Funding of dementia friends
so the money must be going somewhere.

Dementia is clearly a ‘good market’, and so is ‘compassion’ despite inability of some people in being to define it properly.

Nobody is denying the rôle for both to be prominent planks in English dementia policy, but the public needs to have trust that these are all effective use of taxpayers’ money. People who’ve done thousands of home visits, albeit as unregistered dementia care workers, including carers and other careworkers, or even people living with dementia, will have qualms about people without any specialist training themselves of dementia raising dementia awareness.

We do need an honest debate about how effective these initiatives are, especially in relation to the ‘getting most of your buck’ idea. The system is open to abuse, with powerful people getting more powerful, as a result of who you can get to deliver  your package fast and at the most competitive price.

But there’s scope to be positive.

But this has been an all too predictable consequence of a particular approach which has been festering in England here for many years now.

Beware of ‘suffering’ for persons with dementia

Shibley Rahman 3 Comments

David Cameron referred to the need for Britain to change its attitude to the “rising tide of people suffering with dementia” on May 26, 2012.

“Beware of Pity” is a 1939 novel by the Austrian writer Stefan Zweig. It was Zweig’s longest fiction book.

The young lieutenant Anton Hofmiller is invited to the castle of the Hungarian magnates of Lajos Kekesfalva. He meets his paralysed daughter Edith and develops subtle affection and deep compassion for her. Edith falls in love with him. They get engaged for fear of ridicule and contempt, he denies the engagement to the public.

A typical newspaper article on dementia these days tends to have a tripartite structure. Firstly, there’s the story itself. Secondly, there’s a brief description about the dementia, invariably Alzheimer’s disease. And finally there’s a mention of ‘If you’re worried, go and see your GP or your local Alzheimer’s Society.’

There are in fact about a hundred different types of dementia, not all of which present predominantly with significant memory problems. Some can present in a ‘hidden’ way, much like any disability. Some persons with dementia have marked changes in behaviour and personality (with normal cognition). Some may present with quite focal problems, with impairments of memory of concepts, known as “semantics”.

Quite often, the title of the newspaper piece will have the word “sufferer” in it. And yet this word has been more divisive than unifying. The word “sufferer” encourages one, perhaps, to “do something about it”, perhaps with a financial donation, in the hope of alleviating somebody’s suffering. ‘Healing’ of suffering might then take place.

A person with dementia, poorly hydrated in severe pain, most would agree, ‘suffers’, and it would be inhumane to deny this phenomenon. A problem clearly arises with a person living with dementia, who does not perceive himself or herself as suffering.

Wikipedia’s definition of ‘suffering’ is reasonably noncommittal:

“Suffering may be qualified as physical or mental. It may come in all degrees of intensity, from mild to intolerable. Factors of duration and frequency of occurrence usually compound that of intensity. Attitudes toward suffering may vary widely, in the sufferer or other people, according to how much it is regarded as avoidable or unavoidable, useful or useless, deserved or undeserved.”

The word ‘suffering’ also plays into the hands of an uneven power relationship between the carer and the recipient of care. It rests also easily with the medical model of dementia, where you diagnose an illness and implement some form of intervention.

On the hand, some people believe that avoiding the term ‘suffering’ is being needlessly politically correct.

But it depends where this advice is being given. The UK “Office for Disability Issues” suggests,

“Avoid phrases like ‘suffers from’ which evoke discomfort or pity and suggest constant pain and a sense of hopelessness.”

It’s been conceived that some form of suffering in old age has been largely perceived as “inevitable and natural, a fact of existence that was to be ameliorated but not eliminated” (George, Whitehouse and Ballenger, 2001).

The term “living well with dementia” was in fact the name of the English dementia policy, about to be renewed later this year by the current Government. Putting emphasis on wellbeing also encourages people to interact with charities, carers or doctors, in the hope that things might get better once a ‘timely diagnosis’ is achieved.

To shed some light on this, I decided to ask a person living with dementia whether he considered himself to be a ‘sufferer’.

“I’m not a ‘sufferer’, but I do suffer from dementia. I don’t know of anyone with a medical condition who doesn’t suffer?”

“Well I have a medical condition – alcoholism. If I don’t drink, I don’t suffer.” I thought my reply was clever.

“If you drink, you suffer.” Not clever enough obviously.

Changing the goalposts I asked, “Do you suffer though?”

“No, I suffer when I can’t remember things, or I feel I’m losing my independence. But I’m very positive, always have been. I’m a very practical person. But I think people who know me well suffer from watching me.”

This last sentence is actually quite a subtle point.

It is suggested that many patients with dementia may be unaware of some of their symptoms, a phenomenon known to cognitive neurologists as ‘anosognosia’.

So symptoms may be more evident to friends and family, rather than the person himself or herself. And, regardless of this, the perception of symptoms may be worse for onlookers than for persons living with dementia themselves.

“I don’t like the word ‘sufferer’ as it implies I should be the recipient of pity.”

“Does a person with cancer suffer if he has no pain or weight loss?” he asked. It was at this point I knew I was losing, fair and square.

Suffering

A philosopher, Jeff Malpas, argues that if suffering threatens a breakdown in the intactness of the person, then the refusal to recognise the suffering of others potentially represents a double threat.

Malpas argues that it is a refusal to acknowledge the persons who bear that suffering, but in addition, it is a refusal to recognise our own connectedness to those persons, and so is a refusal of our own personhood, our own being human.

Another interesting philosophical position is also reached by Paul Ricoeur.

“It is the confidence that the self has in its ability to act and to suffer, to do and undergo things that it can impute to itself as its own doings and sufferings.” (his entry in the ‘Stanford Encyclopaedia of Philosophy)

In the legal sphere, the words “pain and suffering” are used somewhat interchangeably physical and emotional damage, as well as discomfort caused by medical treatment of the injuries (surgery, radiotherapy, etc.), limitations on daily activities, depression, scarring and disfigurement. Such judgments need to be accurately assessed, for the purposes of compensation. But judging the degree of ‘suffering’ of a person with dementia very rarely occurs in the context of an industrial compensation case.

In a completely different world, suffering and pleasure are respectively the negative and positive affects, or hedonic tones, or valences that psychologists often identify as basic in our emotional lives.

The evolutionary role of physical and mental suffering, through natural selection, is considered to be quite primitive in nature: it warns of threats, motivates coping (fight or flight, escapism), and reinforces negatively certain behaviours (punishment).

The brain areas involved in someone’s perception of suffering using this reductionist approach might be identifiable. But who’s to say what you measure in a brain scanner is the same as a person’s perception of suffering?

And if the disease process alters the parts of the brain involved in the perception of suffering, have such individuals lost an ability to perceive suffering?

Consistent with ‘personhood’, individual opinions will differ, and nobody has a ‘correct opinion’ as such. For as many who feel that ‘suffering’ is a very genuine phenomenon over which it is dangerous to be in denial, they are others who do not feel that persons with dementia should be specifically targetted for special treatment.

So, beware of saying ‘dementia sufferers’. You may be opening a can of worms, even in the title of a well-meaning article on dementia.

#MyNameIs not being invited to #NHS14Expo on #NHSChangeDay to talk about #dementia

Shibley Rahman 1 Comment

One of the more nauseating aspects of #NHS14Expo were people asking me as usual why I hadn’t gone to #NHS14Expo.

It’s quite simple.

I wasn’t invited.

I had a chat with Martin Rathfelder, the Director of the Socialist Health Association, about it. I’m currently on their Central Council.

Like one of my followers @RoyLilley, I have a vague interest in English health policy – as evidenced perhaps by my 300 blogposts on the matter this year?

“You would have loved it Shibley! You should’ve come!”

Arrggghhh.

But then Martin suggested a number of routes by which I could legitimately come next year – one of them was joining a CCG, or becoming a NHS Foundation Trust governor.

I do have a cursory interest in postgraduate medicine, and have in fact written some books on it.

Martin also suggested I could capitalise on an interest in long term conditions.

As is well known, I survived a six week coma due to meningitis in 2007. That’s how I became physically disabled. I’ve been in recovery from alcohol ever since, and successfully regulated (and rehabilitated) by the Solicitors Regulation Authority who oversee lawyers.

Martin also suggested dementia as an inroad.

I have an interest in this too.

My paper in Brain in 1999 was the first to explain the symptoms of frontal dementia.

It has been quoted over 300 times by major labs.

It’s even in the current Oxford Textbook of Medicine in their chapter on dementia.

My pal Prof John Locke politely suggested that, as I had actually done a MBA, I was more than capable of marketing my own book.

In fact, in that MBA I also did come top of innovation in the year (though I did come top of both domestic and international marketing too).

Or is it because I am a total social recluse?

Tell that to my 11.7K followers on @legalaware, including David Nicholson, NHS England’s CEO.

David’s Twitter is @DavidNichols0n and his colleagues Clare Gerada (@clarercgp) and Alistair Burns (@ABurns1907) who also follow me.

Tell also fellow followers @helenbevan and @JoeMcCrea1966, two of the principal architects of #NHSChangeDay.

Or is it that I didn’t do a pledge for #NHSChangeDay?

No – I did a pledge. It’s here.

I’ll think about Martin’s advice.

On a happier note, I’ve been given a desk to do my research questionnaire on perception of #G8Dementia at a one day conference in Scotland.

Glasgow of course was where I was born. I like their dementia policy too.

And they’ve given me a chance to talk about my evidence-based book on living well with dementia – it’s here, and my marketing opportunities are non-existent.

Of course, I wasn’t actively excluded.

And one final note.

My book on ‘Living well with dementia’ is here – go and buy it, I beg you! Pleeeeeezzzzzzzzzz

Rant over.

“Life story” – an interesting example of networks being used constructively for innovation in dementia

Shibley Rahman 1 Comment

Innovations which have a goal of improving wellbeing have a very good future in dementia care. Those which harness networks are likely to be particularly successful.

There are currently 800,000 people with dementia in the UK, with over 17,000 younger people. There are therefore serious questions as to how to maximise their chances of living well as individuals, as far as possible.

New innovations for people living with dementia are not at all trivial. One broadly accepted definition of an innovation is “the adoption of an idea or behavior, whether a system, policy, program, device, process, product or service, that is new to the adopting organisation”. A “strategy innovation” means thinking in an entirely new way about the basis on which the organisation, system or industry operates.

The assumption that dementia is best managed through a medical model with drugs that can cure or treat well the symptoms has necessitated challenges, not least because many of the medications are ineffective for many.

A ‘person centred approach’ places the person at the centre of their own care, and considers the care and support provided by others, and not simply as someone with dementia. “Person-centred” care, to improve individuals’ wellbeing, was first initiated in the U.K. in the 1990s by professor Tom Kitwood, who treated people with dementia as individuals, referring to their “personhood” to reinforce the fact that they still experienced emotions, both positive and negative.

Indeed, Prof Sube Banerjee, the new Chair of Dementia at Brighton and Sussex and Medical School, has demonstrated with colleagues that wellbeing in dementia can be dissociated from cognitive performance.

A plan for person-centred care in dementia, launched in France in 2008 together with the use of internal day care centres within nursing homes, dramatically reduced the prescription of anti-psychotic drugs – in some cases to zero. So a clinical and financial rationale for such innovations can be found.

A nice example of a community interest group which has implemented networks in introducing a philosophy is called “Life Story Network” (LSN).

Specifically, a ‘life story’ or’ life history’ is the term usually given to describe a biographical approach, which involves reviewing and evaluating an individual’s past life events. It involves working with a person and/or their family to find out about their life, recording that information in some way and then using the information with the person in their care.

It therefore is an excellent example of a person-centred approach in dementia care.

Whilst based on the principles of reminiscence and storytelling, it is distinct in that it also involves a critical review of life events and identifies present/future wishes.  Ultimately relevant aspects of a person’s past and present life are recorded with the aim of using this information to benefit them in their present situation.

As interest in integrated models of care continues, see for example the recent “Oldham Commission in Whole Person Care“,  this matter has become particularly relevant to all leaders in NHS and other care providers (including social care).

Everybody has a life story. These are rich and varied and can be used to communicate who we are to the people around us. People with dementia sometimes need help to communicate their histories and identities, and ‘Life Story work’ might provide a way for them to do this more easily.

LSN is a social enterprise which works with a range of partner organisations individuals. Social enterprises are well suited to deliver person-centred care, as they are typically dynamic and diverse businesses set up to address social or environmental need. promote the value of using life stories to improve the quality of life and wellbeing of people and communities, particularly those marginalised or made vulnerable through ill health or disability.

The benefits of such an approach include promoting increased understanding of the person and supporting the delivery of person-centred care. Other benefits include improving relationships between family caregivers and staff within inpatient settings.

Life stories also provide a valuable insight into the life of someone especially when they have difficulty in sharing this information themselves. Life Story work can be used to help develop a better understanding of someone needs and wishes so that care can be provided in a person- centred way.

According to the “Your Community Matters” Report produced by LSN in July 2013, there is a wealth of evidence, both global and national, which supports a more integrated, community based wellbeing approach to enabling individuals to remain connected with their support networks where they live. This approach puts a positive value on social relationships and local support networks, on self confidence and the ability of people to take control of their circumstances.

People with dementia and their families are to play a pivotal role in a pioneering study being led by Kate Gridley into the effectiveness of using Life Stories to influence their care and improve their quality of life. This new 30-month study will provide an essential evidence base for the technique which has the potential to help many of the people in the UK with dementia, as well as the people who care for them.

Researchers will carry out a systematic review of literature on Life Story work and gather qualitative data through focus groups involving people with dementia, family carers and professionals. They will then develop a theoretical good practice model of Life Story work as well as surveying the current use of Life Story work in dementia care across England. Finally, the researchers will assess the potential effects and costs of using the technique in specialist inpatient and long-term care settings, and consider further evaluation.

Networks are crucially important for the functioning of networks. A view has arisen that social networks such as Twitter act as innovative broadcasting devices, connecting people’s need for information and attention. But they are fundamentally collaborative.

The basic premise of social networks – allowing users to build a custom group of friends and colleagues with whom you can choose to selectively interact –is its broad appeal. But this premise has, in fact, been around for many decades in science research. Contrary to the popular image of the lone scientist toiling away in an isolated lab, just about all scientific discovery is a collaborative effort that requires extensive networks of lab teams.

The Twitter account @LifeStoryNetwrk is relatively young. People can choose also to interact with traditional competitors on such networks, and this can drive innovation. The dilemma is: if these actors collaborate, they become stronger competitors, but they also strengthen their rivals’ positions.

The advent of the Internet has provided new opportunities for collaboration thought impossible just a few years ago. Exchanging ideas and work by e-mail or Wikis, for example, has opened up new avenues for spontaneous communication.

Virtual teams such as  “Collaborative Innovation Networks” (COINs) are already in existence. COINs are virtual teams of self-motivated people with a collective vision, enabled by technology to collaborate in achieving a common goal – an innovation – by sharing ideas, information, and work.

An example of a COIN in the LSN is its online forum, where information can be shared and discussed. This demcoratising effect means that we can influence the future, through contributing in an online network to Commission on Residential Care which is secure and typified by peer support. 

This approach was been widely adopted already in the dementia sphere. Towards the end of last year, exciting new proven benefits in the training of dementia staff in Australia were published.

It is very likely that social enterprises will act as drivers of good innovation practice in dementia care. Pooling of abilities in the EU SELUSI initiative, for example, is a testament to this. One of its aims is “to create a trusting environment with social enterprises across Europe, as well as generate new evidence that could usefully inform the practices of network organizations” (sic).

Working together to improve the wellbeing of a person with dementia is not simply an innovation. It’s common sense, as it potentially improves something for persons with dementia we can do something about.

That is, their wellbeing.

The David and Goliath problems of the English Dementia Charities

Shibley Rahman 0 Comments

To be clear, I think the work of the Alzheimer’s Society is fantastic.

Since their restructuring, with the support of the Department of Health, they have done really important work in activities to do with dementia, not just Alzheimer’s disease.

Goliath (Hebrew: גָּלְיָת,) is a a giant Philistine warrior defeated by the young David, the future king of Israel, in the Bible’s Books of Samuel (1 Samuel 17).

Britain’s energy market is said to be dominated by the Big Six gas and electricity suppliers. All markets need competition to function effectively, with genuine choice for consumers.

Mentions of the Alzheimer’s Society are extensive.

This is for example Hazel Blears on 16 December 2013:

Blears Hansard

And here is the recruitment drive of Jeremy Hunt, four minutes in into his speech at the G8 Summit in December 2013:

It really has become a gigantuan operation for smaller charities to compete also in the social media:

David and Goliath tweet

Last week, it was announced that staff at Marks & Spencer, Argos, Homebase, Lloyds Bank and Lloyds Pharmacy will attend special sessions to help them understand the needs of customers with dementia and support them better.

The Alzheimer’s Society makes clear that the drive towards ‘Dementia Friends’ forms part of the six-month progress report on the Prime Minister’s Challenge on Dementia.

And it has been a success we can all be proud of. Norman McNamara is also soldiering on with his “Dementia Friendly” Torbay initiatives.

As a result of commitments from  various businesses regarding “Dementia Friends”, over 190,000 staff will become Dementia Friends – 60,000 from M&S, 70,000 from Lloyds Pharmacy, 50,000 from the Home Retail Group, which owns Argos and Homebase, and 11,500 from Lloyds Bank.

And yet ‘dementia friendship’ is a global initiative.

Supportive communities are well known in Japan.  For example, Fureai kippu (in Japanese ふれあい切符 :Caring Relationship Tickets) is a Japanese currency created in 1995 by the Sawayaka Welfare Foundation so that people could earn credits helping seniors in their  community.

An initiative from another charity, the Joseph Rowntreee Foundation,  “York Dementia Without Walls” project looked into what’s needed to make York a good place to live for people with dementia and their carers.

They found that dementia-friendly communities can better support people in the early stages of their illness, maintaining confidence and boosting their ability to manage everyday life.

There are various reasons why it is so easy for the Alzheimer’s Society to ‘clean up’ in the dementia charity market in England.

These are helpfully summarised in this summary slide, derived from the work of Michael Porter, Bishop William Lawrence University Professor of Business Management at the Harvard Business School, USA.

Porter

The Alzheimer’s Society have protected their visual mark for “Dementia Friends” on the trademark register for the IPO, as trademark UK00002640312. It is protected under various categories. This is across various classes, including ‘gymnastic and sporting articles’.

picture 3

It would have cost a lot for the Alzheimer’s Society plus the cost of instructing their lawyers, which are cited here as the big commercial/corporate law firm DLA Piper in Leeds. It’s simply impossible for smaller charities to compete resource-wise over this arm of intellectual property.

Currently, according to the UK trademark office, it costs £170 to apply to register a UK trade Mark if you apply on-line (£30 discount applies for on-line filings). This includes one class of goods or services. It is a further £50 for every other class you apply for.

And the pattern of news stories about dementia has now reached a consistent homogeneous pattern. For example, this story about Prunella Scales being diagnosed with dementia has a standard line with the word ‘suffering’ (“Fawlty Towers star Prunella Scales is suffering from dementia – but is determined not to let it stop her performing, her actor husband Timothy West has revealed.”)

But the language is not one of ‘living well with dementia’, consistent with other metaphors such as ‘timebomb’, ‘explosion’, ‘flood’ and ‘tide’.

And crucially it is very rare to have any other dementia charity named apart from the Alzheimer’s Society because of their strong brand presence inter alia.

There are other dementia charities in England, however.

BRACE is a registered charity that funds research into Alzheimer’s disease and other forms of dementia. Their role is to help medical science understand the causes of dementia, find ways of diagnosing it earlier and more accurately, and develop more effective treatments.

Dementia UK is a national charity, committed to improving quality of life for all people affected by dementia. They provide mental health nurses specialising in dementia care, called Admiral Nurses. And yet there have been cuts to the Admiral Nurses service.

On December 13th 2013, the Dementia Advocacy Network reported that they would be closing after 12 years of supporting independent advocates (this is the current link to their website.)

DAN closure

An article in the European Journal of Marketing (Vol. 29 No. 10, 1995, pp. 6-26), entitled “The market positioning of British medical charities” by Sally Ann Hibbert from Department of Marketing, University of Stirling, Stirling, Scotland, does throw some light on this issue.

Hibbert notes that clusters of people who donate to charities exist overall.

“Following on, the next highest scores are revealed for cancer and deaf charities, the former investing notably in education and research for cures, the latter focusing largely on treating the effects of deafness to improve the quality of life for people affected. This trend from preventive approaches to care services can be traced down through the charities on the vertical dimension to hospices, which are primarily carers.”

In the absence of a reliable marker through scans or psychology before symptoms, and in the absence of good treatments of dementia which stop the condition “in its tracks“, it was hard to make the pitch for molecular biology research and treatments. The industry was described as “ailing“.

That’s why it was so crucial to compare dementia to AIDS (see video above).

There is a legitimate concern that driving policy towards limited angles in this way could obscure the need for funding a grossly under-resourced community care services for dementia.

And living well with dementia is an appropriate policy plan for persons currently with dementia and their caregivers.

But specialist groups of people with dementia are beginning to emerge. For example, the “Dementia Action Alliance” is a non-profit dedicated to improving the quality of life for people living with the effects of dementia.

The DAA Carers Action (@DAACarers) also do incredible work .

Like the Government has been to provide an “equal playing field” for any qualified provider of NHS services, it is impossible to think that the playing field for raising money for dementia through charities and people such as the Purple Angels is anything like an “equal playing field”.

This is a major flaw in current policy, and could mean that there are some losers and some winners. This ‘zero sum gain’, simply, is not on I feel.

It is deeply concerning that “might is right”. We should try to work together.

Sale proceeds from Norman McNamara’s books will go to ‘Young Dementia UK’

Shibley Rahman 0 Comments

Young Dementia UK is a very interesting charity.

The original name of the charity, “The Clive Project”, was a tribute to Clive and Helen. Our name change to YoungDementia UK is aimed at strengthening that tribute well into the future.

Clive was in his mid-40s when his career as an Army officer suddenly nose-dived. He had difficulty communicating with his colleagues. He was made redundant in 1992; he was 45 and his children were 3 and 4. He never worked again.

After a fraught year of failed job applications and difficulties in coping at home, Clive was forced to look for a reason for his difficulties. Clive was diagnosed with early onset dementia in December 1993.

There’s another great initiative worth noting, involving this ‘Give as you live’ website.

This website enable people to donate to a charity of their choice, just by doing their normal shopping online. You sign up to their website, then just do your shopping as you normally would (but via their website), and then they donate a percentage of the shop to the charity of your choice.

Major retailers have signed up for it – John Lewis, Tesco, Amazon etc.

So many people do their food shopping online, or buy presents and household items online. Imagine if a small donation was made to YDUK (“Young Dementia UK”) every time how much money could be raised? And as I say, it doesn’t cost the person shoppping a penny or take up any of their time!

And in another great move – sale proceeds from Norman’s books (twitter here) will go to this years nominated charity of 2014 which is Young Dementia UK.

You can view the books here on Amazon UK.

 

 

Silent Voices “My Battle With Alzheimer`s Rages On [Paperback]

Me And MY Alzheimers: Me and My Alzheimers, join me as fight the fight of my life against this awful illness: 1 [Paperback]

More Than Words, Poems by An Alzheimer`s Sufferer [Kindle Edition]

More than words, poems by an Alzheimers sufferer: My everyday fight with Alzheimers: 1 [Paperback]

The Ghost Of Marnie Jones: 1 [Paperback]

Silent Voices “My Battle With Alzheimers Rages on” [Kindle Edition]

Me And My Alzheimers [Kindle Edition]

The difficulties of the delayed diagnosis for dementia in primary care

Shibley Rahman 1 Comment

If a surgery appointment is booked for someone over 65, a ‘participating GP’,  might be incentivised to ask about memory problems in a patient at risk of dementia due to heart disease, stroke or diabetes.

There is a concern that some people are missing out on a timely diagnosis of dementia.

It is claimed that some people go undiagnosed for around ten years even, and a large proportion of persons with dementia have never received a formal diagnosis of a dementia.

A further worry is that certain people with much lesser degrees of memory impairment will be plugged into the dementia care pathways, according to Dr John Cosgrove.

At worst, this policy, where individuals are said to be ‘ambushed’ in the video above, may put people from going to see their GPs about other problems.

The risk factors, heart disease, stroke or diabetes, are not known to be risk factors for many types of dementia, although they are certainly treatable risk factors for the ‘vascular dementias’.

There is a concern about what then happens to those people who then receive a possible diagnosis of dementia.

It is known that many of these individuals do not actually want further investigations. In fact, for some, they will not even turn out to have a dementia at all.

A probable diagnosis of dementia is certainly ‘life changing’, and it can mean that a person has access to support services.

But a full work-up of a dementia, ideally, needs more than a quick chat over memory problems.

In one type of dementia, frontal dementia, common in the younger age group (that is, below the age of sixty), memory problems are not even prominent. This type of dementia is characterised by an insidious change in behaviour and personality, often noticed first by those closest to the person with that type of dementia.

And dementia is not the cause of all memory problems: depression in the older age group is an important cause of memory problems.

It is not entirely clear what the medical model offers for dementia; many of the drugs for memory have modest effect if that in Alzheimer’s disease, the commonest form of dementia worldwide.

In fact, Prof Sube Banerjee last week in the Brighton and Sussex Medical School as the new Chair of Dementia there voiced concerns about the relative ineffectiveness that antidepressants can have in dementia; this comes on top of previous concerns that antipsychotics may be relatively contraindicated in some patients particularly, and might even lower the objective quality of life of an individual with dementia.

It’s impossible also to ignore the effects that a diagnosis of dementia might potentially have on the ability of a person to drive a motor vehicle.

And a diagnosis of dementia might put pressure on well informed people concerning financial considerations through ‘lasting power of attorney’.

One wonders how the drive for diagnosis in primary care can enable a balanced discussion of all these powerful issues, against the background of this government policy to improve diagnosis rates of dementia.

At the tail end of Cathy Jones‘ excellent Channel 5 report, the lack of adequate funding of social care is raised.

Further details of Dr Cosgrove’s concerns are described clearly in this blogpost.

This policy as it stands could do much more damage than good,with many unintended consequences arising from false diagnoses.

But there are pressures at play which might give this policy a sustainable momentum for the timebeing.