Tag Archives: Policy

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It’s not only the £ that’s plummeting. So is trust in the English dementia strategy.

It can’t have escaped you that the pound has recently taken an enormous battering. The pound has fallen by almost 20% against the dollar since the Brexit vote, trading below $1.22 and €1.10 on Monday, which is its lowest level against the euro since March 2010. It was reputed to have hit a 31-year low, then a 138-year low. But I don’t want to moan.

There is thankfully enough money to subsidise investment bankers in the City so that they can retain inclusion in the single market. Billions can also be spent on HS2 or on foreign wars. You see, these “free market” luvvies folks are suddenly all pro state intervention and public funding when directed at certain people.

You can of course decide to leave the entire English dementia strategy to the free market. Instead of recapitulating on the original Dementia strategy of 2009-14, “Living well with dementia”, the script suddenly stopped, only to be replaced by near annual piecemeal statements. A laissez faire approach meant that, apart from national diagnosis rates, scrutinised to create new markets, the level of planning at the personal budget was allowed to flourish instead of a national idea of what is going on.

Of course, not all people with dementia are bitesize individual units.  The late great Tom Kitwood used to emphasise the interconnectedness of us all as human beings. Most people believe that the essence of care is experienced in the moment when one person connects to another. Defining the meaning of care is stuff dreams of nursing education are made of, but is hard to escape that “caritas” comes from the Latin word meaning to cherish, to “appreciate, to give special, if not loving, attention to”. It represents charity and compassion, and generosity of spirit. It represents something precious that needs to be cultivated and sustained, often lost arguably with competition and CQUIN targets, some might say.

The Prime Minister’s Challenge on Dementia 2020 Implementation Plan prepared by the Dementia Policy Team speaks to the language of commissioning, personal budgets, big-pharma funded research. However, in the real world, we KNOW that being a full-time carer is a very demanding role, and that according to the 10-yearly censuses from the National Office for Statistics the number of unpaid family carers continue to sky-rockets. Respite care breaks are an opportunity for carers to take a holiday or simply spend some time looking after their own needs, safe in the knowledge that their loved one is receiving the very best care. And respite care can be a chance to meet new people, enjoy a change of scenery and try out some new activities and experiences.

Overall as a society, there needs to be a much greater recognition of how to support carers to do what they very much want to do and well, and indeed I am happy that the new NICE guidance on dementia in August 2017 will address this, yet further research, I feel, is needed to understand how family carers of people with dementia can be best supported and how resilience may contribute to the health of adults.

As two thirds of all people with dementia live in their own home, either alone or with family carers, it is vital that domiciliary home care providers are able to demonstrate good practice. I am happy that the Dementia 2020 speaks to “care planning”, but the reality is inescapable.

Look for example at p.6 of“Social care for older people” King’s Fund September 2016:

“Our assessment of national data and in-depth interviews in four unnamed local authority areas found that the past six years have also brought huge pressures on the social care market. Central government grant reductions to local authorities have been passed on to care providers in the form of reduced fees, or below in ation increases. Combined with shortages of nurses and care workers, higher regulatory standards and the introduction of the National Living Wage, this has put many social care providers under unprecedented pressure.

Many social care providers are surviving by relying increasingly on people who can fund their own care, but those dependent on local authority contracts are in difficulty. Home care services face particularly acute workforce shortages and are now in a critical condition everywhere, threatening to undermine policies to support people at home. e possibility of large-scale provider failures is no longer of question of ‘if ’ but ‘when’ and such a failure would jeopardise continuity of the care on which older people depend.”

You can therefore see at once that the language of “creating dementia-friendly health and care settings” in no way cuts it.

The Dementia 2020 vision consolidates the approach of prevalence, preventing well, diagnosing well, living well, supporting well, dying well. But where’s the “caring well”?

It could be that ‘caring well’ is subsumed under ‘supporting well’, but caring is substantially more than supporting. And take for example the aspect of caring which is mentioned in Dementia 2020, there is barely a mention of an infrastructure of electronic patient records neither at national or cluster-bombed transformation local level.

I was aghast to see that “respite care” and “domiciliary care” do not feature in Dementia 2020, along with “caring well”. And nor do clinical specialist nurses, which I indeed wrote about at great length recently with Karen Dening, head of research and evaluation at Dementia UK.

I believe clinical specialist nurses, including Admiral nurses, act as a glue in holding people together, for example providing specialist practical advice, and emotional and psychological support from diagnosis to post bereavement; acting as a single point of contact, helping to join up different parts of the health and social care system and meeting your needs in a coordinated way; and offering advice on referrals to other services and liaise with health and social care professionals.

But not needing to care well helps make savings which are modest even compared to the marketing budget of ‘Dementia Friends’.

Caring well potentially saves money for the NHS too, say for example in enhancing health in care homes, so the acute departments of the NHS don’t see as many incidents of falls, fractures, infections, mobility problems, delirium, sensory impairment, and so on; and of course a worthy goal in itself in improving the wellbeing of people including in residential care.

On October 11th, Chris Hopson, CEO of NHS Providers, told the Commons Health Select Committee that leaders of the forty four English Strategic Transformation Partnerships were working on plans which are “at risk of blowing up”.

The CQC didn’t mince its words either recently in its ‘State of Care’ report.

On the BBC’s Today Programme yesterday, Jeremy Hunt confirmed he was “putting together plans” to find £22bn in efficiency savings by 2020. Hunt’s words appeared to confirm reports that Theresa May had told health chiefs the NHS would receive no extra money as a result of Brexit.

In this brave new world, it’s not only the £ which is plummeting, but also trust in some of the senior leaders of Big Charity, government and the NHS. The tragedy of it all is that it might not be accident, and is in keeping with an approach made popular previously of “the small state”.

Ronald Reagan, as President of the United States in the 1980s, also had a ‘deficit problem’ and little prospect of balancing the budget in the near term, further forcing a shift in the responsibility for social and health services to states and localities. In this environment of fiscal restraint and small government ideology, policy approaches promising a “cure” were likely to prevail over those of “care”.

In this ideological boom of political and cultural conservatism, it is little wonder Jeremy Hunt talks of the clearly inane talk of ‘making every pound count’ when funding for dementia care is on its knees. And expunging ‘caring’ from Dementia 2020 is to put out of sight a resource-intensive activity, falling predominately on women in many jurisdictions, which is neither perceived “budgetable” nor appreciated at the policy level. This cumulatively has helped to legitimise the biomedical framework that deviates public support away from caregivers, as it feeds the hope for effective treatments or a cure for dementia, but we can no more await eagerly a cure for dementia  by 2025 than we can expect figures on the side of a bus to come true.

Sadly, the English dementia policy bus has skidded off the road into the ditch, entirely due to political ideology, and nobody appears accountable in this revolving door environment of top jobs.

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The UK budget 2016 has exposed convincingly the grim reality of 'dementia friendliness'

The most significant aspect of yesterday’s Budget was that UK growth is revised down last year, this year, and indeed every year it’s forecast. But it was the day last orders were given – failure to meet most targets, and more borrowing and national debt. The current Government boasts that it is only with a strong economy it can deliver on aspects of life, many of which are relevant to people living with dementia and all types of carers. But it is clear that the UK economy is still inherently weak. The concept of the ‘dementia friendly communities’ has been to the financial benefit of many people without dementia, but the key question remains about its license to operate from the perspective of people living with dementia and their significant others.

 

Instead, as a question of priorities, corporation tax has been cut and billions being handed out in tax cuts to the very wealthy. This is unlikely to be exhibited in any significant improvement in dementia friendliness by multi-nationals and high street chains.

 

It is right that the Chancellor has recognised the funding pressures facing councils and local services over the next few years and has not announced any more cuts to local government.

 

But it is indeed disappointing that the Conservative Chancellor has not accepted calls by councils, the NHS, care providers and the voluntary sector to bring forward the £700 million of new money in the Better Care Fund by 2019/20 to this year. The failure to do so means vulnerable members of the community still face an uncertain future where the dignified care and support they deserve, such as help getting dressed, fed or getting out and about, remains at risk. This is the grim reality of what is marketed as ‘dementia friendly communities’ has come to in the UK, a concept which still continues to benefit some rather than others. This is at a time when the Government is known to be shifting priorities from dementia to diabetes, to which instruments such as the ‘sugar tax’ and obesity strategy might more directly speak to. The morale of people expected to deliver high quality care, including junior doctors and nurses, is at the lowest it has been for quite some time.

 

Vital social care services are relevant to protecting and enable people in society, not just in relieving the massive problem of delayed discharges in the NHS. The threat of a care home crisis is still disturbing. The deficit in the NHS has risen to its highest level ever on record. Waiting times are up, the NHS is in a critical condition, hospital after hospital faces serious financial problems. The NHS should have the resources to concentrate on the health needs of the people, not do budgetary acrobatics to survive. With a distinct lack of influential people speaking truth to power, dementia policy in the UK is in a dire state.

 

At a time when the Public Accounts Committee have only just reported that NHS finances have deteriorated at a severe and rapid pace, we do not just need gimmicks from charities loyal to Government of ‘fixing dementia care’.

 

The whole system needs proper resource allocation so that people living with dementia can have their health and wellbeing enhanced, whatever the care setting. Mistakes here are compounded in a double lock from serious mistakes by Government civil servants in dementia. The recent Implementation Plan for the Department of Health 2020 document on dementia did very little to prioritise the importance of skilled workforce such as clinical specialist nurses in care pathways, and indeed was generally bereft of meeting the needs of people with dementia and carers in clinical settings.

 

We have also seen devastating cuts to public health budgets and mental health budgets, further having a devastating impact on English dementia policy. Previous governments have touted the use of these tools as promoting ‘choice and control’, and yet the rhetoric is clearly mismatched to reality. Earlier this month the Government forced through a £30 per week cut to disabled ESA claimants. As dementia is a disability both under domestic and international legislation, it is hard to see how the UK wishes to promote international policy of sustainable communities and independent living for people living with dementia under the lens of disability rights.

 

Finally, the UK needs to value and acknowledge the social capital of the huge army of upaid carers, as well as paid carers many of whom are afflicted by under-employment and insecurity. Security comes from knowing where your income is and knowing where your job is. We need to value all carers if the rhetoric of ‘dementia friendly communities’ is to have any substance.

 

All in all the UK budget exposed the grim reality of “dementia friendly communities”, and the stark impotence of key individuals now to speak truth to power.

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Time to put a stop to selling dementia fads

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I completely understand the sheer effort and energy which people put into their initiatives and endeavours to do with dementia.

But the reality is we have a malnourished NHS and social care service, and it’s been getting much worse in the last few years.

Sit down before I tell you this shocking news. Integration is not the ultimate panacea. It would have been possible to put in the infrastructure for elements of care coordination without the hyperbolic use of the term ‘breaking down the silos’ many many years ago.

In fact, ‘integration’ in one form or another has been in political party documents for as long as I can remember meaningfully in the field, and this is approaching twenty years.

New models of care, though admirable, have become a smokescreen for calling out what is wrong in the here and now. And explanations of ‘scaling up’ the ‘pilots’ have thus far been lacking; as have been the practical logistics of ‘spreading the innovations’.

Whilst I am all for beefing up the primary care team, I do not believe that NHS England, crazy though they are, should be thinking of training up a new model army of community pharmacists to diagnose dementia. Dodgy diagnoses would then flood a memory clinic service already at full capacity. If the NHS were running properly, this is a rôle which could be properly supported by GPs or specialist nurses in dementia. And the very worst reason for giving this rôle to community pharmacists would be the dubious motive that dementia-diagnosis community pharmacists would somehow be shielded from “the cuts”.

I think one of my worst snakeoil manoeuvres has been the aggressive pimping of mechanisms to ‘interpret the patient voice’ to clinical commissioning groups. The collapse of the recent Cambridgeshire contract shows what can happen when commissioning can spiral out of control.

The overuse of words like ‘inspirational’ and ‘incredible’ has become rather nauseating; people living with dementia themselves have told me that they find unease at being labelled ‘heroic’.

Genuine co-production including co-design of services by persons with long term conditions (or patients) is a wonderful thing. As Prof Edgar Cahn puts it, it is respecting the ‘core economy’ with no more throw away people.

I have mixed feelings about the Prof Debra Meyerson work on boat rockers. I am inevitably pleased that Dr Raj Mattu, an ultimate ‘boat rocker’ in the actual NHS, has been given a financial settlement after years of distress, but nobody would want to have been through what he has been through. It is either naïvety or sheer stupidity to think that the NHS is a safe culture for “radicals”. It’s almost, instead, got to a time where there needs to be a blossom of real sparky counter-insurgent radicals who can put this bunch of corporate shared values seekers to shame.

I indeed agree that patients are experts in their condition at their own particular time. I also agree that specialists who have been who have been associated with this field for nearly twenty years have something to contribute too.

This is not my beef. It’s the active flogging of ‘involvement’ and ‘engagement’ tools which has been encouraging insidiously a culture of dependency on third parties delivering care; this is been far from encouraging independence at all (of people with dementia that is, not grant applicants).

I have been equally disgusted by the commercialisation of personhood, including the commercialisation of all the contributions from the late Prof Tom Kitwood. These packages of selling care, I feel, have not taken on the field markedly in an original way since the time of Kitwood’s death. But they have been a neat packaging of freely existing original groundbreaking work, from which certain people have financially profited.

I think also it is time to call out some frankly mediocre professors in dementia whose research output or output of ideas has not been that stunning. I think at one extreme I am from an era when FR Leavis was given a lectureship in Cambridge aged around 50, but the hyperbolic titles for some people lecturing in dementia is a disservice to the majority who have contributed extensively to the field instead.

I think it is unfortunate all of this appears to have markedly deteriorated in the last few years. I do think social media has contributed. Democratisation is fine, but cult-like bandwagons are not. There are too many fads in dementia which proper leadership could be calling time on.

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

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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My talk for the panel discussion next week at the King's Fund #kfdementia

The talk will be based on the following, as time permits.

The Department of Health now needs to consider the next phase of work on Dementia, after the Prime Minister’s Challenge on Dementia, which is due to end in March 2015.

We are now in a much better place than where we were.

This is great.

There are inevitably formidable challenges for us in England on the formation of policy.

Where there seems to be money available on ‘the magic money tree’ available for foreign conflicts, the money spent on people currently living with dementia is in a financial strait jacket.

We know, for example, social care funding has not been ring fenced since 2010. We know that delayed discharges due to social care cuts can make life a misery for people living with dementia stuck in hospitals.

We have to try to make ‘whole person care’ work in the next few years. Various technological innovations have a massive role to play in the quality of lives of people living with dementia.

I believe that, although spending is potentially a ‘bottomless pit’, we pay for we what get to some extent.

We know that, by 2015, the intention was to have 1 million people as “Dementia Friends”. That £2.4 million programme was funded by the Social Fund and the Department of Health.

But we do need to know whether it’s had any effect?

How much communication has been turned into action?

People living well with dementia are not just potential customers for more welcoming high street shops.

As global policy is now recognising, it is not simply a case of being ‘dementia friendly’. People with dementia have human rights and expectations in equality law.

Increasing awareness about dementia, though, is inevitably important to reduce stigma and discrimination against people with dementia. We share this goal in common with other jurisdictions.

But cultural attitudes have been sadly slow to change. It took ages for a person living with dementia to become opted onto the World Dementia Council. And even there, there weren’t open democratic elections for this position.

But it would be hard to dismiss that we are in a much better place than we were in a few years ago. A challenge is, that by focusing too much on a ‘cure’, we ignore falling standards of care for those currently living with dementia.

And the public need to be told the truth about the likelihood of a cure for any of the dementias. There are about a hundred different types of dementia. So the world is being sold a pup potentially if we are talking about a single cure for dementia.

In June 2013, the Blackfriars Consensus statement concluded that risk in the population might be reduced so that fewer people at particular ages develop dementia.

This dialogue needs to be transparent. Last week, the World Innovation Summit for Health’s (Wish) Dementia Forum met. Scientific and financial challenges have meant that, between 1998 and 2012, there were 101 unsuccessful attempts to develop drugs for Alzheimer’s disease, with only three drugs gaining approval for treating symptoms of the disease, it said. In October 2014, it was reported that an astonishing nine in ten care homes and hospitals fail to provide the proper treatment.

The Care Quality Commission review found widespread neglect, lack of care, poor training and failings in communication. We can’t simply slash the bed numbers: population ratio and hope things will be ok.

And the caring culture is not just boosted by people selling the idea of compassion. A caring culture is boosted by not having carers on poor employment conditions. If things aren’t right, patients and carers need to know what advocacy routes are open to them.

The lack of progress, however, have enmeshed a number of different governments in England across the years.

The late Enoch Powell even robustly tackled the issue in his infamous ‘Water Towers’ speech of 1961. It should not be seen as a failure of medicine if people with dementia need to benefit from an acute hospital admission.

However, hospitals can be very disorienting places for people with dementia.

An aspiration for people with dementia to live well in the community is not an unreasonable one. Informal caregivers, friends and family, often know persons with dementia the best. And their wellbeing matters too.

Involvement of all of them with professionals to pre-empt problems and issues proactively is a valid aspiration. Improving specialist nursing capacity will be vital for this.

And how are we to measure ‘success’? All too often the English dementia wonks have ascertained success through “the numbers game”. The number of people recruited into dementia studies. The number of diagnoses of dementia. But we need high quality as well as an ethical quantity.

A diagnosis of dementia should be accurate. Some types of dementia react very badly to certain types of drugs.

We need a properly trained workforce which can make these accurate diagnoses in a timely fashion.

The next five years therefore have similar challenges, but the opportunities are also exciting.

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Where now for the English dementia strategy? My views on policy. #kfdementia

It is estimated that in 2015 there will be 850,000 people living with dementia.

Having decided at the beginning of last year that I would to any conferences on dementia, I found myself attending the Alzheimer’s Show in London Olympia and Manchester; the Alzheimer’s Association conference in Copenhagen of a book signing, Alzheimer’s Europe conference in Glasgow (which was themed on autonomy and dignity; and human rights), Alzheimer’s BRACE in Bristol on the future, Dementia Action Alliance Annual conference 2015 and the Dementia Action Alliance Carers’ Call to Action 2015. So, in other words, I utterly failed.

I will be a guest on a panel in the plenary discussion for “Leading Change in Dementia Diagnosis and Support: Actions to Inform Future National Strategy” to be held at the King’s Fund on Tuesday 24th February 2015.

Full details of this one-day conference are here.

The hashtag for this event is

#kfdementia

.

Details of our discussion are as follows.

3.40pm Panel discussion: shaping a new national strategyTake this opportunity to put your comments and questions to our expert panel about the key issues that need to be addressed when designing and delivering the next national strategy. George McNamara, Head of Policy and Public Affairs, Alzheimer’s Society in conversation with:

  • James Cross, Area Manager and National Lead for Dementia and Mental Health, Skills for Care
  • Rachel Niblock, Carer’s Call to Action Coordinator, Dementia Action Alliance (invited)
  • Gary Rycroft, Solicitor and Partner, Joseph A. Jones & Co Solicitors and Member, The Law Society Wills & Equity Committee
  • Beth Britton, Expert by Experience

Beth’s father had vascular dementia for approximately the last 19 years of his life. She is now one of the U.K.’s leading campaigners on dementia and a Consultant, Writer and Blogger

  • Dr Shibley Rahman, Academic in Policy of Living Well with Dementia
  • Chris Roberts, Expert by Experience

Chris is in his early 50s and is living with young onset vascular dementia. Chris is a dementia friend champion and writes a regular blog to raise awareness.

The following are very familiar “mutual tweeps” to me, and I wish them all well for their involvement on the day too.

  • Professor Alistair Burns (@ABurns1907), National Clinical Director for Dementia
    NHS England and Professor of Old Age Psychiatry, University of Manchester
  • Jean Tottie (@Jean_Tottie), Chair of the Life Story Network and Former Carer
  • Jeremy Hughes (@JeremyHughesAlz), Chief Executive, Alzheimer’s Society
  • Dr Martin Brunet (@DocMartin68), GP, Programme Director, Guildford GP Training Scheme
  • Rachel Thompson (@raheli01), Admiral Nurses Lead, Dementia UK (invited)
  • George McNamara (@George_McNamara), Head of Policy and Public Affairs, Alzheimer’s Society
  • Richard Humphries (@RichardatKF), Assistant Director of Policy, The King’s Fund
  • Beth Britton (@BethyB1886), Expert by Experience
    Beth’s father had vascular dementia for approximately the last 19 years of his life. She is now one of the U.K.’s leading campaigners on dementia and a Consultant, Writer and Blogger
  • Gary Rycroft (@garyrycroft), Solicitor and Partner, Joseph A. Jones & Co Solicitors and Member, The Law Society Wills & Equity Committee
  • Chris Roberts (@mason4233), Expert by Experience
  • Tony Jameson Allen (@SportsMemNet), Director, Sporting Memories Network, and Winner of the Best National Initiative Award at Alzheimer’s Society National Dementia Friendly Awards 2014

 Last year, I got off my backside and published my first book on dementia. Called “Living well with dementia: the importance of the person and the environment“, the aim of it was not to sell the ideology of ‘person centred care‘. It was instead a well meant introduction to the original work of Prof Tom Kitwood and personhood, which has been pivotal in double declutching away from the Pharma stranglehood on dementia postdiagnost pathways. My point was that a person living with dementia had a past and present which were going to influence his or her future, and an interaction with the environment (such as the outside world or ‘built environment’, assistive technology, design of the home, design of the ward, dementia friendly communities) were major determinants of a positive wellbeing.

The book was broad-ranging, and I felt signified a change in direction of the narrative away from ‘treatments for dementia’. I also tried to cover in a balanced and fair way how the National Screening Committee had arrived at their original decision not to recommend screening for dementia. This decision has now been upheld. As it happens, I agree with the conclusion of the National Screening Committee, but for slightly different reasons. I feel a lot of people focus on the lack of sensitive and specific inexpensive screening tests – and this must be correct. But I also feel that because of the minimal effort to build up an extensive coherent evidence base on the effect of psychosocial interventions on living well with dementia, you are never going to be able to satisfy the last requirement, of improving morbidity (if you cannot improve mortality).

I have previously written about this here.

I essentially don’t want to rain on the parade of wanting to find a cure or effective symptomatic treatments before 2025. But this expectation, I feel, has to be much better, as the track record in developing treatments thus far has been poor. It is now well appreciated that G8 dementia was ultimately contrived as a reaction to Big Pharma on dementia, and it must be acknowledged, I feel, resources allocated into Pharma should not be at the expense of relatively inexpensive methods for promoting living well with dementia for people who are currently living with a diagnosis.

My original contents were therefore as follows:

Foreword by Professor John R Hodges; Foreword by Sally- Ann Marciano;Foreword by Professor Facundo Manes; Acknowledgements; Introduction; What is ‘living well’?; Measuring living well with dementia; Socio-economic arguments for promoting living well with dementia; A public health perspective on living well with dementia, and the debate over screening; The relevance of the person for living well with dementia; Leisure activities and living well with dementia; Maintaining wellbeing in end-of-life care for living well with dementia; Living well with specific types of dementia: a cognitive neurology perspective; General activities that encourage wellbeing Decision-making, capacity and advocacy in living well with dementia; Communication and living well with dementia; Home and ward design to promote living well with dementia; Assistive technology and living well with dementia; Ambient assisted living and the innovation culture; The importance of built environments for living well with dementia; Dementia- friendly communities and living well with dementia; Conclusion; Index.

The essence of my emotions about ‘living well with dementia’ is that living well with dementia is not a slogan to sell a product or service. It is a genuine change in philosophy from the medical model, of diagnosis and treatment, to one which requires a long term care revolution.  As Prof Sube Banerjee said last year at the Dementia Action Alliance annual conference, we don’t need high volume diagnoses which are of low quality; although we all agree that it is unacceptable that people should be languishing for ages waiting for a diagnosis, and diagnostic rates of people who want to be diagnosed appear poor. We need high quality diagnoses. And even Baroness Sally Greengross, the Chair of the All Party Parliamentary Group for dementia, readily admits that the post-diagnostic care and support could and should be much better.

Against quite a lot of resistance from people in the medical profession which at best was complete indifference and lack of recognition of my work, I found many people in the general public who have thanked me for my work. I am completely independent, so I do not draw an income from any of my work apart from minimal royalties for the book. I paid my way to go to all conferences I went to last year. I will again be paying my own way for travel and accommodation to go to the 30th Alzheimer’s Disease International conference in April 2015 in Perth, on “cure, care and the lived experience.

I was specifically asked last year by a panel representing the General Medical Council which people had benefited the most from my book. They expected me to say Doctors, but in all honesty I reported that the book had been extremely positively received by caregivers and people with dementia.

And I was staggered when a colleague of mine sent out this innocuous tweet which was well receive which had 151 ‘favourites’.

tweet

I do passionately want things to change for people with dementia and caregivers, but I don’t think of myself as a player in change. I don’t call myself anything in wanting change to living well with dementia; this is particularly because I really don’t believe in job descriptions or titles. I get fussy about the fact I am a person living well with recovery from alcohol, and physically disabled, but I am not ‘ill’ and as such I don’t see myself as a ‘patient’. I am on the medical register, but I do not feel defined by that (I have spent a few years not on the medical register due to consequences from when I was actually exhibiting symptoms of an illness). I have written numerous papers and two books on dementia, but I do not see my self as an ‘academic’. But I am hugely passionate about English and global policy.

I don’t want post-diagnostic care and support in my jurisdiction to be so haphazard. I totally sign up to the drive towards better inclusivity and accessibility for people with dementia, but I personally wouldn’t call this policy drive in this country or abroad “dementia friendly communities”. I would feel uneasy with a policy called “black friendly communities” or “gay friendly communities”, as these terms encourage division for me. Besides, I know from my personal experience with disability that all manifestations of disability are not necessarily evident to external observers. To take as an example, I see double all the time due to a problem with my brain, after my six week coma due to meningitis in 2007 when I was in a coma. But no-one, from looking at me, would know that. I understand that some people who are disabled, even if they fit the ‘criteria’ of the term, do not wish to call themselves ‘disabled’.

But the point is that there is now extensive legal advice about the relationship between equality and human rights law and mental health (for example chapter 3 in the new code of practice over the Mental Health Act just published). I have in fact been invited to be on a panel to review what I anticipate to be a very influential document looking at how the law is influencing dementia policy from the Mental Health Foundation early this year. Putting this stuff on a legal footing means that it’s a serious requirement for facilities to be more than aspiration in meeting ‘dementia friendliness‘; it then becomes a legal obligation. Under this view, one would provide adequate signage for people known to have spatial navigation difficulties from a dementia, in the same way that you might build a wheelchair ramp for employees who used wheelchairs in your company.

I feel that this narrative is moving my way, and in the direction away from being given your diagnosis and the conclusion ‘nothing can be done’. Kate Swaffer, in Australia, has elegantly articulated this in detail as “prescribed disengagement” (for an excellent article on this, please see here). Kate has also written a paper on stigma in the Dementia Journal, which is particularly interesting as Kate lives with a dementia herself.

It is a general ignorance of dementia that was thought to contribute to stigma and discrimination against dementia. I often ask London cabbies what they know about dementia; these individuals tend to be extremely well informed about many things, but I have found that unless they have a personal ‘connection’ with someone with dementia they can know very little (but are extremely regretful about not knowing more). The “Dementia Friends” in the UK jurisdiction had an aspiration of making one million ‘dementia friends’, a figure arbitrarily plucked out of nowhere, but presumably based on the successful Japanese “befriending” campaigns.

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They had a target of one million ‘dementia friends’ by March 2015 originally, but I understand that this initiative will now run for the whole of the year. And, at the time of speaking, they look as if they might just make it, according to their website:

friends

I am a “Dementia Friends Champion”. I did my own Ph.D. in dementia at Cambridge under Prof John Hodges. I was the first person in the world to suggest a cognitive method for diagnosing behavioural variant frontotemporal dementia and explain its rationale. This paper is even cited in the chapter on dementia in the current Oxford Textbook of Medicine. I quite enjoy my sessions. I invariably get asked tougher questions in these sessions, which are well received, than I have ever received in academic conferences.

I have no doubt whatsoever that England will have its second national policy soon for 2015-20. An influential report from Alzheimer’s Disease International looked at the value of national plans in an excellent report last year. I have no involvement with the formation of the new strategy, but the composition of the group has been clearly provided.

Members of the ‘Dementia Advisory Group’ are:

  • Chair Clara Swinson, Department of Health
  • Deputy Chair Lorraine Jackson (Deputy), Department of Health
  • Jeremy Hughes, Alzheimer’s Society
  • Tom Wright, Age UK
  • Helena Herklots, Carers UK
  • Bruce Bovill, Carer
  • Joy Watson and Tony Watson, person living with dementia and carer
  • Graeme Whippy, Lloyds Banking Group (representative from the PM Challenge Dementia Friendly Communities Champion Group)
  • Sarah Pickup, Hertfordshire County Council (representative from the PM Challenge Health and Care Champion Group)
  • Martin Rossor, UCL (representative from the PM Challenge Research Champion Group)
  • Paul Lincoln, UK Health Forum
  • Helen Kay, The Local Government Association
  • David Pearson, The Association of Directors of Adult Social Services
  • Hilda Hayo, Chief Executive of Dementia UK
  • Graham Stokes, Chair of Dementia Action Alliance
  • Dawn Brooker, The University of Worcester
  • Martin Knapp, London School of Economics
  • Tim Parry, Alzheimer’s Research UK
  • Simon Chapman, National Council for Palliative Care
  • Jill Rasmussen, Royal College of General Practitioners Dementia Champions
  • Martin Green, Care England
  • Bridget Warr, UK Home Care Association

The terms of reference are here.

It is stated that the Advisory Group will:

1. Review the evidence on progress on dementia care and support over the last five years to identify where progress has been made, key challenges and gaps and priorities for action. This will include looking at the evidence on risk reduction and how the incidence of dementia could be reduced.

2. Consider what success could look like by 2020 in the following broad areas:

  • Improving the provision and continuity of personalised health and social care for people with dementia and carers – this includes risk reduction, prevention, diagnosis, post-diagnostic support, the role of technology and new models of care.
  • Promoting awareness and understanding.
  • Building social engagement by actions of individuals, communities and businesses.
  • Boosting dementia research capacity and capability, the opportunity for individuals to get involved in research and optimising knowledge transfer and pathways to impact.
  • Improving support for carers including improving their health, wellbeing and experienc
  • Cross-cutting: Supporting the education, training and development of the health and care and wider workforce.
  • Cross-cutting: Global action on dementia
  • Cross-cutting: Ensuring equity of access, provision and experience

This will include looking at what we can learn from international evidence and experience.

I feel that this would form a coherent strategy.

Whilst traditionally, it might be useful to consider campaigning for dementia in terms of ‘cure’, ‘care’ and ‘prevention’, in reality living well with dementia potentially straddles all three areas.

I believe it’s extremely important to have a large body of people with dementia and carers report back on what their needs are. Such committees have had a long history of involving people with dementia and carers which might appear tokenistic. The World Dementia Council has not even appointed a person living with dementia to sit regularly on their Council.

As far as future post-diagnostic care and support is concerned, we clearly can no longer have a situation where, once a diagnosis is made, some people with a diagnosis, friends and family are totally lost in the system, or even at worst lost to follow up. There appears to be little coordination of care, and sometimes there’s more signposting to services than actual services. There seems to be little coordination of information held for practitioner and professional care in primary and secondary care, and between health and social care. We have a ridiculous situation where people with dementia, some of whom can do very badly when they are admitted to hospital partly due to a distressing change in environment, cannot be discharged in a timely manner from hospital due to social care cuts in service provision.

There is a clear drive to person-centred care, and I feel a very good way of discovering personhood is to adopt a ‘life story’ approach. I anticipate that networks for life story and carers will be invaluable during the lifetime of the next parliamentary term 2015-20.

The current Government has continued with the longstanding policy drive towards personalisation promoting ‘choice and control’. However, there are nuances to how policy can be implemented; for example a rights-based advocacy approach might be considered by some preferable to the promotion of personal budgets, which poses issues about the lack of universality of care, scope for co-payments, further marketisation, and complete lack of choice if you run out of money.

The next Government will be bequeathed developments in the handling of NHS data for service care provision, and of course the new Care Act. Some reflections are here on the Care Act:

//

I feel the the main challenge, in my opinion, in policy is to introduce safely and in a competent way “whole person care“. It’s going to take a lot of bottle to integrate properly health and social care, with all the challenges which endure, including breaking down organisational boundaries, cultural silos, facilitating competent knowledge sharing sand transfer, and a complete cultural change unfreezing from the biomedical model to one which recognises abilities not making feel inadequate because of their disAbilities. I would very much like to see the medical profession put some effort into the annual ‘follow up’. The point of this check up is not to chart with meticulous accuracy has changed in brain scans, psychology, or blood tests, meritorious though these initiatives are. The point about these follow ups is to ensure that there is a synchronised system of post-diagnostic care and support and everything is being done to improve living well with dementia (for example encouraging social networks and mitigating against social isolation). I feel personally the next Government should implement a “year of care” for dementia.

This change can only come from a social movement led by the major stakeholders themselves – people living with dementia and caregivers. A “top down reorganisation” will not work.

And I would prefer leaders in dementia not to be a Prime Minister but in fact to a person living with dementia. I think that way the needs of people currently living well with dementia will be better addressed, not just in service provision but also in research spend. I believe strongly that people newly diagnosed should have access to ‘dementia advisers’ and a properly resourced network of clinical nursing specialists. These nursing specialists are vital in pro-active case management, but the evidence base does need exploring further. The development of the personalised care plan, which can hopefully avert crises to encourage relaxed effective care out of hospital where possible. I have written about dementia specialist nurses, previously, here.

My interests are reflected in my new book ‘Living better with dementia: looking to the future’ due to be published on June 18th, 2015.

The contents are here.

1. Introduction. 2. Framing the narrative for living well with dementia. 3. Thinking globally about living well with dementia. 4. Culture and living well with dementia. 5. Young onset dementia and living well with dementia. 6. Delirium and dementia: are they living well together in policy. 7. Care and support networks for people living with dementia. 8. Introduction to autonomy and living well with dementia. 9. Can living well with dementia with personal budgets work? 10. Incontinence and living well with dementia. 11. Nutrition and living well with dementia. 12. Art and creativity in living well with dementia. 13. Reactivating memories and implications for living well with dementia. 14. Why does housing matter for living well with dementia. 15. Networks, innovation and living well with dementia. 16. Promoting leadership. 17. Seeing the whole person in living well with dementia. 18. Conclusion.

I think this book is more ambitious than the first one. In keeping with my original research interests, I consider why art and music are so important for living well with dementia. I also propose a new theoretical framework, the first in the world to my knowledge, why reactivation of “sporting memories” works. The “Sporting Memories Network” has been a very impressive initiative thus far in promoting wellbeing.

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Finally, I wish everybody luck in formulating our new English dementia policy to be implemented within the lifetime of the next Government. It is imperative that the views of the community of people living with dementia and the army of approximately 5.4 million unpaid caregivers are prioritised above the needs of others, I feel, above all.

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A powerful group led by persons with dementia may be just the disruptive innovation the world needs

This, rather than “The Golden Arches”, is fast becoming a symbol of hope.

symbol

The motor vehicle was supposed to be a major disruption for the horse and cart. Paper superseded parchment. The DVD long surpassed the audio cassette.

Progress and innovation, whatever your political philosophy, some might say is pretty inevitable.

In terms of technology, people have recently opined about three ‘industrial revolutions’, and “the shock of the new”.

Innovations can not just be about products. They can be about fundamentally a whole new way of doing things.

The traditional large charity for dementia model has its advantages. It, through economies of scale and large operational efficiencies, can implement large projects, liaise with governments, and have a lot of media backing in the implementation of their projects.

The down-side to this is that it can too easily suffocate innovation from small social enterprises. It can also pursue agendas which are biased in one particular direction.

One example is witnessed in the the appointment of the World Dementia Council.

This Council, quite strangely, does not include any representatives of persons with dementia or representatives of carers. If its primary purpose is to develop new innovations or drugs, they will need to know the efficacy of user adoption at some stage even from a management or industrial basis.

As it is, large charities, in promising to deliver new orphan drugs for dementia one day, can totally ignore the need for high quality research into living well with dementia. They can treat their associated persons with dementia as ‘subjects’ for future drug trials.

This is incredibly problematic and obstructive for those people with dementia – and their supporters including researchers – who wish to pursue an agenda of quality of life in dementia for current people living with dementia.

Even in the press bulletin for the first meeting of the World Dementia Council, dementia is referred to as a ‘timebomb’.

Gillings

This is incredibly  troublesome for some purists who note that the prevalence of dementia across two decades in England may in fact be falling, due to primary care managing successfully the vascular dementias.

So in this specific scenario – a timebomb it is not.

Of course, the ‘holy grail’ for drug companies, and large charities supporting them, is that there exists a ‘pre-dementia’ stage, of people without symptoms, who could be amenable for drug treatment later one day, or advice about lifestyle and risk factors.

Currently, the evidence for the feasibility of this approach is very poor, however.

But something quite amazing, and indeed “disruptive”, happened quite recently. To say it could be explosive for international policy is in fact an understatement.

The 29th International Conference of Alzheimer’s Disease International, entitled “Dementia: Working Together for a Global Solution” held on 1-4 May 2014 at San Juan, Puerto Rico, was beyond reasonable doubt a storming success.

The ADI welcomed Glenn Rees, current CEO of Alzheimer’s Australia, as its Chair-Elect. This is a highly significant appointment, and one which people who promote the living well with dementia philosophy extremely warmly welcome.

So what?

A plucky group of people with dementia emerged, gave talks, and presented cutting-edge research. It was no longer a case of ‘listening to people with dementia’, but rooms packed full of people mesmerised by original contributions from a totally different perspective.

One academic in stigma was overheard to say to a person with dementia: “You don’t look like a person with dementia.”

That person commented that the academic didn’t, either.

Dementia Alliance International is a non-profit group of people with dementia from the USA, Canada, Australia and other countries that seek to represent, support, and educate others living with the disease, and an organisaton that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

Membership in Dementia Alliance International is free and open to people with dementia only, in any country.

Membership is open to any person with dementia who would like to be part of a global community of others with dementia where members support and encourage each other to live well with dementia, or oin others in fighting against the stigma, isolation and discrimination of dementia.

In addition to the larger countries, there has been interest from  Taipei, New Zealand, St Maartens, Spain, Puerto Rico, and Japan, to name but a few. Of course, such an initiative is immediately attractive to a lot of other people who have the cash, including world philanthropists who have some personal connection with dementia.

This group has even been ‘noticed’ by the larger corporates and corporate-like entities in dementia, but people close to this group report that they are desperate to keep their autonomy and identity, despite possible (legal) enticements.

They know that they are on the threshold of massively disrupting current policy. They know they won’t be one or two bums occupying seats on research panels of large charities any more, only.

They will be there now leading the pack.

1. ADI staff get recognition for their work.

ADI staff get recognition

2. Final panel on Sunday includes person with dementia from USA, Scott Russell.

Final panel on Sunday includes person with dementia from USA, Scott Russell.

3. Final Panel with Scott Russell.

Final Panel with Scott Russell.

4. Person with dementia from Puerto Rico, Julio, speaks out as keynote. He got the only standing ovation of the morning’s speakers.

Julio

5. The DAI team

The DAI team

6. Kate Swaffer, from DAI, before her presentation of her model, “Prescribed disengagement”

DAI16

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A person newly diagnosed with dementia has a question for primary care, and primary care should know the answer

GP seeing his patient

Picture this.

It’s a busy GP morning surgery in London.

A patient in his 50s, newly diagnosed with Alzheimer’s disease, a condition which causes a progressive decline in structure and function of the brain, has a simple question off his GP.

“Now that I know that I have Alzheimer’s disease, how best can I look after my condition?”

A change in emphasis of the NHS towards proactive care is now long overdue.

At this point, the patient, in a busy office job in Clapham, has some worsening problems with his short term memory, but has no other outward features of his disease.

His social interactions are otherwise normal.

A GP thus far might have been tempted to reach for her prescription pad.

A small slug of donepezil – to be prescribed by someone – after all might produce some benefit in memory and attention in the short term, but the GP warns her patient that the drug will not ultimately slow down progression consistent with NICE guidelines.

It’s clear to me that primary care must have a decent answer to this common question.

Living well is a philosophy of life. It is not achieved through the magic bullet of a pill.

This means that that the GP’s patient, while the dementia may not have advanced much in the years to come, can know what adaptations or assistive technologies might be available.

A GP will have to be confident in her knowledge of the dementias. This is an operational issue for NHS England to sort out.

He might become aware of how his own house can best be designed. Disorientation, due to problems in spatial memory and/or attention, can be a prominent feature of early Alzheimer’s disease. So there are positive things a person with dementia might be able to do, say regarding signage, in his own home.

This might be further reflected in the environment of any hospital setting which the patient may later encounter.

Training for the current GP is likely to differ somewhat from the training of the GP in future.

I think the compulsory stints in hospital will have to go to make way for training that reflects a GP being able to identify the needs of the person newly diagnosed with dementia in the community.

People will need to receive a more holistic level of support, with all their physical, mental and social needs taken into account, rather than being treated separately for each condition.

Therefore the patient becomes a person – not a collection of medical problem lists to be treated with different drugs.

Instead of people being pushed from pillar to post within the system, repeating information and investigations countless times, services will need to be much better organised around the beliefs, concerns, expectations or needs of the person.

There are operational ways of doing this. A great way to do this would be to appoint a named professional to coordinate their care and same day telephone consultations if needed. Political parties may differ on how they might deliver this, but the idea – and it is a very powerful one – is substantially the same.

One can easily appreciate that people want to set goals for their care and to be supported to understand the care proposed for them.

But think about that GP’s patient newly diagnosed with dementia.

It turns out he wants to focus on keeping well and maintaining his own particular independence and dignity.

He wants to stay close to his families and friends.

He wants to play an active part in his community.

Even if a person is diagnosed with exactly the same condition or disability as someone else, what that means for those two people can be very different.

Once you’ve met one person with dementia, you’ve done exactly that: you happen to have met one person with dementia.

Care and support plans should truly reflect the full range of individuals’ needs and goals, bringing together the knowledge and expertise of both the professional and the person. It’s going to be, further, important to be aware of those individuals’ relationships with the rest of the community and society. People are always stronger together.

And technology should’t be necessarily feared.

Hopefully a future NHS which is comprehensive, universal and free at the point of need will be able to cope, especially as technology gets more sophisticated, and cheaper.

Improvements in information and technology  could support people to take control their own care, providing people with easier access to their own medical information, online booking of appointments and ordering repeat prescriptions.

That GP could herself be supported to enable this, working with other services including district nurses and other community nurses.

And note that this person with dementia is not particularly old.

The ability of the GP to be able to answer that question on how best her patient can lead his life cannot be a reflection of the so-called ‘burden’ of older people on society.

Times are definitely changing.

Primary care is undergoing a silent transformation allowing people to live well with dementia.

And note one thing.

I never told you once which party the patient voted for, and who is currently in Government at the time of this scenario.

Bring it on, I say.

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A need for much more effective regulation for dementia charities

All governments in the UK have recently thought about ‘reforming public services’, mostly in the context of public-private partnerships (PPP) or the private finance initiative (PFI). Third sector organisations, such as social enterprises and charities, especially large ones, are acting in increasingly private or even corporate ways.

Many feel that this has now become a dangerous policy issue in dementia in England.

There is much goodwill towards dementia as a cause, not least because there are 800,000 people living with dementia currently in the UK. On account of this, there should be a moral onus for fundraisers and politicians to act in the general interests of all people with dementia, and carers.

Take for example the report of the “Dementia Friends” initiative.

It is reported as, by 2015, 1 million people becoming Dementia Friends. The £2.4 million programme is funded by the Social Fund and the Department of Health. The scheme has been launched in England and the Alzheimer’s Society is hoping to extend it to the rest of the UK soon.

A newspaper article on dementia will now have a standard format. There’ll be the story itself, a bit about dementia, and invariably a bit about Dementia Friends. But the situation is very serious indeed. It wouldn’t be tolerated if all the discussions of groceries in newspapers or online media only made references to Sainsbury’s.

This is clearly problematic for other charities such as the Joseph Rowntree Foundation, who have their own longstanding friendship initiatives, but who have never publicly complained about this situation.

When the State goes into partnership with third sector organisations, the need for much more effective regulation in public-private partnerships is imperative.

This is what the OECD had to say about the issue in their document “Recommendation of the Council on Principles for Public Governance of Public-Private Partnerships May 2012”:

“Sound regulatory policy promotes the efficient functioning of regulatory agencies by ensuring that they operate under an appropriate and clear mandate, with the necessary independence from political influence and regulated subjects, that they are appropriately resourced and equipped, and that their decision-making is fully transparent and accountable,”

“Where PPPs are employed in the delivery of infrastructure facilities with natural monopoly characteristics, the role, design and organisation of regulators is important to secure value for money for the public sector and protect users and consumers. This role should be clear to all (staff, regulated entities and the community).”

“The appropriate sector regulator should consequently be consulted in the project design and subsequently monitor compliance with regulated service standards. This role is important not only in shaping the markets, but also with concrete issues such as service quality, profitability, tariffs and prices. Of particular interest in monopoly-like situations is the degree of profitability compared to the sector average using various benchmarks.”

There are good business management reasons why such entities are able to exert monopoly-like effects. Large organisations benefit from ‘economies of scales’, meaning that it is cheaper to do things in bulk. And large organisations can afford, say, to attend conferences, pay for posters, stand space, marketing pamphlets, etc.

It is simply impossible for smaller organisations to compete with this. For example, large charities are able to instruct commercial/corporate law firms to protect their logos and trademarks on intellectual property registers; and are able to exert competitive advantage that way.

And this was from Public Health England last year:

“The aim is to create a fully-integrated marketing programme which will help transform how the public thinks and feels about dementia, increase social connectedness and upskill society, so that people understand how they can help. It will encourage people to join the Dementia Friends programme, launched by Alzheimer’s Society, and invite businesses and communities to become dementia-friendly organisations.”

There’s been a whole plethora of cutbacks, which have thus far gone relatively unnoticed under the RADAR of the mainstream media. For example, it is reported that Essex County Council has just finalised plans to axe £200,000 funding for Mundy House, the only dementia day care centre in South Essex.

A number of people have told me in private that they cannot compete with the Alzheimer’s Society, but are increasingly having to find strategic partnerships with them otherwise they really would have no hope of competing in commissioning, even if they feel that their values and project are distinct.

The suboptimal nature of this sometimes bursts onto Twitter, where it can be difficult to have a highly managed media message. Tommy Whitelaw, well respected campaigner for carers’ voices, wished the Alzheimer’s Society to share his video, and these were some of the responses when the video wasn’t shared.

For all of twelve hours I had forgotten about this major problem, until this reminded me:

And a friend of mine on Facebook, who had been a longstanding supporter of the Alzheimer’s Society, and who himself/herself lives with dementia, complained last night that (s)he was very dillusioned about his/her views weren’t being listed to, amongst a plethora of other grievances about the current direction.

(S)he had just in fact read my survey about who were the winners and losers of the G8 Dementia survey according to about 90 of my followers on Twitter.

I think this situation is intolerable. I intend to write to the Alzheimer’s Disease International about my concerns, because we need a diversity and plurality in fundraising for all the dementias. I know that I already have the support of many who are equally concerned. All we need, I feel, is an open and transparent debate about what or who is calling the shots in English dementia policy.

And finally, this tweet has summed up my concerns. Thanks Bernadette.

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My name is Shibley, and I'm addicted to buying my own book 'Living well with dementia'

I’ve sat in more recovery sessions than you’ve had hot dinners….

.. possibly.

So I get a surge of dopamine whenever I receive yet more copies of my book from Amazon.

Worth every penny.

Packaging

I am Shibley. and I’m addicted to buying my own book.

in a circle

But I also have a weird habit of getting people I know to sign my copy of my book.

I get withdrawal symptoms from not having enough copies.

I also get tolerance – I need to have an increasing number of copies to get the same “kick” from my book.

Thanks enormously to the following ‘well wishers’, though, who have signed my book.

A huge thanks to Gill  (@WhoseShoes) for her unflappable support of me and my book.

Here’s Gill’s blogpost.

And here we are!

GS

I felt very happy to give a copy of my book to Prof Sube Banerjee, newly appointed Chair of Dementia at Brighton and Sussex Medical School. Sube has in fact been the lead for England for dementia – his work is quoted in my book, and I think he’s made an enormous contribution to the living well with dementia literature.

Sube

And what does the future hold for ‘living well with dementia’?

Other ‘signatories’ include:

@RichardatKF

Richard Humphries

@lisasaysthis

I’ve known Lisa for yonks on Twitter. Lisa is one of the few people who’ve supported me through the bad times too.

Lisa

@crouchendtiger7

CrouchEndTiger

@ermintrude2

ermintrude3

@mrdarrengormley

Darren

But now you can ‘Look Inside’ to get a flavour of my book – as there is now a Kindle edition (thanks to Alice in my book publishers @RadcliffeHealth)

Here it is on Amazon.

Look inside

Here is a sample chapter from my book ‘What is living well?’

‘Living well’ is not some bogus mantra for the hell of it. It is an ideological standpoint which serves to promote the dignity of our fellow citizens who happen to also have a clinical diagnosis of dementia.

And here are the “beautiful people” who came to my book launch at the Arlington Centre, Camden, one afternoon in February. I can’t believe that this wasn’t even a month ago now!

Book launch

One of the happiest days, as well, was giving Joseph a copy of my book as a gift.

Joseph
Joseph was in fact my carer when I could hardly walk or talk, when I was in physical recovery from meningitis on ITU (where I was unconscious in 2007).

And those were the days…

Royal Free

And THIS is the famous poppy.

This picture was taken by Twitter pal, @charbhardy, first amongst equals in the #dementiachallengers.

the famous poppy

After I said I was buying my own copies, @KateSwaffer asked:

Klaws

But Kate has read a copy of my book from cover to cover:

And as @Norrms says – how can ‘living well with dementia’ fail?

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