Tag Archives: England

     blog (1)     

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.

Share This:

     blog (1)     

We need to define what we mean by 'post diagnostic care' for dementia

Let me lay my cards on the table: we need now to have a national or even local debate what “post-diagnostic support” for dementia actually means.

This discussion shouldn’t be between the same old same old; we need some fresh faces and fresh voices to help design a system fit for purpose for those who are diagnosed with dementia in England.

So far, there have been in effect two Prime Minister’s Challenges (2012 and 2015) which have highlighted the need for more research, the importance of a timely diagnosis, the essential nature of “post diagnostic support”, raising the profile of dementia with “Dementia Friends”, issues of risk reduction, training and hints at an enhanced rôle of primary care, not just GPs, in offering proactive care and support to promote wellbeing. This was a tall ask.

In March 2015, the Department of Health published ‘The Prime Ministers Challenge on Dementia 2020’ which details the vision for dementia care and support in the future. The document places importance of diagnosis, but also post-diagnosis support and high quality services for people with dementia.

 

 

I asked the ‘expert panel’ at the UK Dementia Congress last week in Telford at what dementia policy should be formulated; we’d heard the previous day comments made about approaches at country-wide level, as well as local commissioners making decisions which are best for the local population, as well as personal budgets. The somewhat idealistic objection to personal budgets is that it masks rationing of resources at an individual level, and do not necessarily promote the most clinical effective intervention, at a time when resources have become scarce through deliberate underfunding. I did the personal budgets debate is incredibly complicated, and I reviewed what I could in my current book ‘Living better with dementia: good practice and innovation for the future’.

The truth is : people with dementia are often still sent out in a wilderness following diagnosis, some even lost to follow up in England, and nationally it is estimated one third of people still do not have a diagnosis. There have been even calls for a ‘right to diagnosis’. It is estimated that one quarter of acute hospital beds are occupied by people with dementia, and there is increasing concern in English policy about whether the health and wellbeing needs, met and unmet, of people with dementia and carers are being addressed in the right place and right time.

There’s about 430,000 people living in care homes, and recent studies suggest that 80% of people in care homes have dementia. There is evidence to suggest that prescription of neuroleptic drugs is higher in this group. This is not solely England’s problem, but is an artifact, arguably, of the successful medicalisation and globalisation of a dementia strategy. There is now a huge interest in developing dementia care in post-diagnostic settings, whether at homes or in care homes. I see this work as completely continuous with the Prime Minister’s Dementia Challenge, and NHS England, CQC and Care England are key players.

The Care Quality Commission published an incredibly influential review of care services ‘Cracks in the Pathway’; that there is more good care than poor care in the care homes and hospitals that their inspectors visited, but that the quality of care for people living with dementia varies greatly. The report found that it is likely that someone living with dementia will experience poor care at some point while living in a care home or being treated in hospital which is unacceptable and cannot continue. People living with dementia, their families and carers have every right to be treated with respect, dignity and compassion. This of course is entirely consistent with a ‘rights based approach’, giving due prominence to the social model of disability, and promoted in the recent MHF document, “Dementia, rights and social model of disability.”

Care England’s perspective appears to be that social care and health services should be measured according to the difference they make to the lives of people with dementia. In particular it feels that commissioning should become more personalised and outcome focused through the use of increased numbers of personal budgets. The strand of policy of personalisation is a longstanding one, across all major governments in England. It was advanced in the Care Act (2014), and there has been a quietly-voiced assumption that the unified budget might become the final common pathway of health and social care integration. The political will, despite a Conservative government in 2015, is though somewhat nervousness of privatisation in places, given the considerable political backlash against the Health and Social Care Act (2012).

NHS England has led a successful programme of work across England to increase the rates of diagnosis for people with dementia as part of the Prime Minister Challenge on Dementia 2012 – 2015. This work has increased national diagnosis rates so that almost two thirds of people with dementia now have a formal diagnosis. It is now perceived that NHS England wish to turn their focus onto post-diagnostic support, but the real evidence for this currently thus far is somewhat mute.

In research, there are almost parallel universes in existence. On the one hand, there’s a goal for disease modifying drugs or symptomatic treatments by 2020. On the other hand, a systematic review of training manuals for person centred dementia care identified more than 200 available manuals, only four of which had been evaluated in clinical trials with evidence they conferred benefit to people with dementia. It is hard to tell the extent to which the transformation funds for new pharmacological therapies will elicit drugs which are inexpensive to get past NICE and to be made widely available in the NHS. It’s pretty likely that pharmacological treatments for the dementias will come in a piecemeal manner, though there’s a danger that this strand of research suffers from a bias towards Alzheimer’s disease and frontotemporal dementia. Time will tell on whether drugs in the near future have a meaningful rôle to play in enhancing the wellbeing of people with dementia past the point of diagnosis.

It’s pretty clear that leadership for dementia services needs to be improved system wide. I feel that regional ambassadors and working groups are a great way of seeing views filtered into national practice, as Scotland has shown the way. Research and spreading of good practice in dementia care should be encouraged. This is especially an issue given there are clusters or pockets of good practice, and part of the battle is trying to spread knowledge of what good practice in care homes looks like.

It should be recognised that everyone in the UK has a universal entitlement to healthcare services, currently some people living in care homes are being charged to access services. With the integration of health and social care, no party will be able to avoid long-term the issue of funding. General taxation is by far the most equitable way of funding dementia services. Implementation of private insurance mechanisms would be particularly disastrous for dementia given increasing ability to identify genes determining dementia, and, without the protection of genetic information non-discrimination as in the US, England will need to be vigilant if it pursues avenues in genomic and personalised medicine at some later date. It will be difficult to reconcile how to bolt on a means-tested social care system onto a universal system, but the somewhat arbitrary nature of what is health and what is social care has dangers at a personal level for those diagnosed.

Nonetheless, it seems intuitive that health and care services should be aligned around the person, but this is an altogether simplistic view when one considers that the wellbeing of a person with dementia is intimately linked to the wellbeing of a carer and that a failure to cope from a carer can have severe consequences for the health and wellbeing of a person with dementia. Ultimately, it helps to conceptualise that care should always be person centred and integrated, in that people with dementia need to be able to move in and out of the right care settings with relative ease. Care planning is facilitated by that diagnosis of dementia, and care plans should be personalised, able to be shared and ideally electronic. Discussions about Advance Care Planning should be prominent from a very early stage, and two separate conversations should at some stage take place about when to engage palliative care services and when palliative care should commence. The problem with the term ‘end of life’ care is that it can be difficult to predict, especially for dementia, when end of life precisely occurs. When a bereavement does occur, the post-diagnostic support must have a way of helping the friends and family through this difficult time.

Ideally, all dementia diagnosis should be high quality and follow NICE guidelines. It is worth stating the obvious as the alternative is a huge amount of incorrect diagnoses, e.g. dementia which is in fact minimal cognitive impairment, or young onset dementia dismissed as “mid life crisis”. We therefore need some scrutiny of the way dementia diagnoses are validated across the system, and whether the workforce should include members of other specialties in addition to psychiatry or care of the elderly as ‘gatekeepers’ for the diagnosis, such as neurology, clinical psychology, general medicine or specialist nursing. There are especial difficulties with the efficacy with which the diagnosis is made, such as in people with prior learning difficulties or BAME populations. Diagnostic tools need to be redeveloped for people already in care homes who may have dementia. A diagnosis of dementia in residents of care homes, where clinically appropriate, is absolutely essential to ensure high quality post diagnosis support and care planning. All diagnosis should involve, as far as possible, the person with suspected dementia, their family and the care home staff. This is possibly the biggest caveat about the term ‘person-centred’, in that care should take in the views of friends or family (who are often unpaid carers), and shared decision making amongst all including professionals is important.

A clear narrative should be developed regarding the benefits of diagnosis – from the perspective of the person, their family, care staff and care providers. Even years after national campaigns such as ‘Dementia Friends’, it is not uncommon for the criticism to be voiced ‘but nothing can be done’. The language relating to dementia diagnosis/post diagnosis support should be made clearer and less intimidating, and there should be, I feel, systematic research into the fear of the diagnosis and subsequent symptoms of people given the diagnosis of dementia. I think there’s a legal conversation to be had at some stage after diagnosis, perhaps in the ‘life planning’ phase of post diagnostic support – this could include a discussion of wills, advocacy and power of attorney.

I think there’s a lot to be said for the notion that ‘post diagnosis support’ should be renamed to life planning (immediate) and care and support (medium to longer term) for people with dementia. There should be additional system navigation support for people diagnosed with dementia and their carers – clear outline of roles and responsibilities. I have written about whole person care in my current book ‘Living better with dementia: good practice and innovation for the future’. The trials and tribulations of Barbara Pointon and Malcolm’s care pathway are well known.

alzheimers_web_of_care._malcolm_and_barbara_1

Commissioners need to better understand the vital role of the voluntary sector in supporting people with dementia for services such as dementia cafés. There should be more trained advocates for people with dementia which will in turn support system navigation. GPs need greater support to understand local support and services available for people with dementia and their carers, and need to work closely with organisations such as the Dementia Action Alliance.

Standardised personalised commissioning for people with dementia could be increased through use of personal budgets, but I have explored at great length the opportunities of ‘choice and control’ in my first book ‘Living well with dementia: the importance of the person and the environment’; and subsequently personal budgets in my second book. Budgets are of course not the only way of addressing needs; people with dementia also have legal rights afforded to them under a range of international and international instruments. Shared records and integrated IT across social care and health would be a massive advantage for the development of integrated health and social care; the current Conservative administration has promised an electronic NHS by 2018, but one waits to see whether this promise will hold up.

Care home staff should have equal access to training and development opportunities as health care staff. I think there have been great strides in education of the workforce, including the new skills, education and training framework and Care Certificate from Skills for Care. I do worry about care homes being perceived as ‘outside of’ the community, and this might explain to some extent why a minority of care homes really do provide really bad care. Dementia friendly communities could have an increasingly important role to play. Care homes should become key parts of the community.

There needs to be greater definition of what makes ‘dementia friendly communities’ inclusive or accessible. Additional housing for people with dementia should be planned – better adaptation means more dementia friendly. And the same holds for transport. People with dementia should be paid consultants in the design of such services; I agree in co-production, but I do not condone exploitation. Valuing people with dementia and carers through paid work which is service-related, I do believe, is now a must for all levels of engagement and empowerment.

Greater investment should take place in services that prevent hospital admission and enhance discharge. People with dementia are very often living with other co-morbidities, and anticipating illness and disease must be fundamental to organising health and social care services. Adult social care has a pivotal rôle to play in upholding key principles of social justice, fairness and equality; as well as promoting wellbeing in the best traditions of Tom Kitwood. Perhaps health and wellbeing boards should be incentivised to integrate social care and health commissioning for people with dementia, or NHS England could ultimately detach itself from the activity-based tariff system which potentially promotes illness and fixing it towards a whole person-tariff to promote wellbeing.

Finally, I feel there are obvious gaps in England’s policy and strategy for dementia. “Achieving world class cancer outcomes: a strategy for England for 2015-20” from the Independent Task Force/Cancer Research UK was a massive advance earlier this year. I have no wish to dismiss the important role of dementia advisers and dementia support workers, but the harsh truth we are increasingly expecting people to signpost to rapidly disappearing services (in the name of austerity). Even specialists in cancer feel that they have progressed as far as they would have liked, but there personalised care plans and clinical specialist nurses are more accepted in the framework of national policy and debate. I think, as long as we do not plug this gap in system provision, and the benefits of clinical nursing specialists are well rehearsed elsewhere, England will not be in a position to produce a credible care pathway for dementia. Beyond the loud rhetoric, this would be a massive tragedy for people with dementia and carers.

 

 

 

 

 

 

 

Share This:

     blog (1)     

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.

Share This:

     blog (1)     

Trivialising dementia – too much inappropriate rocking of the boat?

When I wrote my highly successful book, “Living well with dementia”, using the phrase deliberately from the 2009 English dementia strategy document for England, I never knew the phrase was being bastardised so much for often very trivial initiatives in dementia.

On the other hand, I had huge delight in seeing its immediate relevance to a carers’ support group I went to last week.

I feel deeply hurt that the serious issues in my book, such as advocacy for mental capacity, the presentation of the cognitive neurology of the dementias, or the use of ambient-assisted technology have not been widely discussed amongst the wider community.

In that, I feel the book has failed.

I welcome proposals for the next Government to maximise money into actual service, and to re-establish health funding in line with other comparator countries.

Commissioning in dementia is now not based on what is best for the person for the person with dementia, but what is best for your Twitter commissioner friends.

I look forward to the Health and Wellbeing Boards playing a pivotal rôle in establishing some sort of normality for what commissioning in living well with dementia might be as a value-based outcome.

The strangehold of “shiny”, “off the shelf” “innovative packages”, in the drive for the current Government to ‘liberalise’ the financial market in dementia has acted for a cover for disturbing, unacceptable cuts in dementia service provision in the last few years.

I remember ‘boat rocking’ the first time around from the elegant work of Prof Debra Meyerson.

I do not wish to promote frontline professionals, many of whom have spent seven years at least at medical school or in their nursing training, to become lambs to the slaughter in the modern NHS and social care.

Keeping it real, we know that real frontline professionals in medicine and social care, even if they are not in a downright toxic environment requiring whistleblowing, can find it dangerous being risk appetitive.

Indeed, being risk appetitive, while great for innovation and leadership, can literally be deadly for patient safety.

The next Government has enough on its hands with enforcing care home standards and sanctioning for offences against the national minimum wage for paid carers as it is.

We have to think for a second for the vast army of paid workers in the NHS, as well as the rather well paid people who like their shiny new boxes, I feel.

The schism between the social media and what is happening at service level I think is most alarming, and perhaps symptomatic about how the health and social care services have begun to work in reality.

All too often, I am having first hand experience of busy frontline nurses being dragged in front of entrepreneurs in their local dementia economy to hear shills beginning, “I don’t have first hand experience of caring in dementia, but…”, before the hard sell.

This is tragically being reflected on the world stage too, though I do anticipate that the G7 legacy event from Japan which is looking carefully at their experience with care and support post diagnosis, next year, will be brilliant.

It is important for leaders in dementia to have authenticity.

I have severe doubts and misgivings about what gives the World Dementia Envoy the appropriate background and training in dementia for him to be in this important post.

It is all too easy for ‘thought leaders’ in corporate-like medical charities to have no formal qualifications or training in medicine, nursing, or social care, and opine nonetheless about weighty issues to do with policy.

I am concerned that the global ‘dementia friendly communities’ policy plank appears to have been straightjacketed through one charity in England, when it is patently obvious that various other charities such as the Joseph Rowntree Foundation have made a powerful contribution.

The media have largely not engaged in a discussion about living well with dementia, but engaged simply with Dementia Friends or a story arising out of that.

I am alarmed about the lack of plurality in the dementia research sector.

I think the All Party Parliamentary Group (“APPG”) for dementia have done some valuable work, but their lack of momentum on specialist nurses including Admiral nurses, spearheaded by the charity Dementia UK, seriously offends me.

I am sick of how the notion of ‘involvement’ of people with dementia has been abused in service provision mostly, although I am encouraged very much by initiatives such as from DEEP and Innovations in Dementia.

I think there have been genuine improvements in engaging people with dementia in research, through a body of work faithfully peer-reviewed in the Dementia Journal looking at heavy issues such as the meaning of real consent.

I am now going to draw the line of tokenistic involvement of people with dementia to front projects without any meaningful inclusion.

And in fairness, this tokenistic involvement is, I am aware, happening in various jurisdictions, not just England.

All too often, “co-production” has become code for ‘exploitation’ rather than ‘active partnership’.

The prevalence of dementia is actually falling in England, it is now thought.

The ‘dementia challenge’ was our challenge to making sure that we adequately safeguarded against people rent seeking from dementia since 2012.

In that, I think we have spectacularly failed.

I am overall very encouraged, however, with the success of the huge amount of work which has been done, including from the highly influential Alzheimer’s Society, and from the communitarian activism of “The Purple Angels”.

All this ‘radicalism’ has taken on a rather ugly, conformist twang.

radicalism

Now is though time to ‘take stock’, as Baroness Sally Greengross, the current chair of the APPG on dementia, herself advised, as the new England dementia strategy is being drafted ahead of the completion of the current one in March 2015.

Share This:

     blog (1)     

Living well with corporate capture. What is the future of the Prime Minister's Dementia Challenge?

“Citizens have become consumers with status proportional to purchasing power, and former public spaces have been enclosed and transformed into private malls for shopping as recreation or “therapy.” Step by step, private companies, dedicated to enriching their owners, take over the core functions of the state. This process, which has profound implications for health policy, is promoted by politicians proclaiming an “ideology” of shrinking the state to the absolute minimum. These politicians envisage replacing almost all public service provision through outsourcing and other forms of privatisation such as “right to provide” management buyouts. This ambition extends far beyond health and social care, reaching even to policing and the armed forces.”

And so write Jennifer Mindell, Lucy Reynolds and Martin McKee recently about ‘corporate capture’ in the British Medical Journal.

Alistair Burns, England’s clinical lead on dementia, recently concluded a presentation on the clinical network for London with the following slide:

Reminyl Speaker Training Showfile

Alistair clearly does not mean ‘Dementia is everyone’s business’ in the “corporate capture” sense. Instead, he is presumably drawing attention to initiatives such as Brighton and Sussex Medical School’s initiative to promote dementia awareness at all levels of an organisation (and society).

 

Microsoft PowerPoint - H1 Dementia Care Event

 

The comparison with diabetes is for me interesting in that I think of living well with diabetes, post diagnosis, as conceptually similar to living well with dementia, in the sense that living well with a long term condition is a way of life. And with good control, it’s possible for some people to avoid hospital, becoming patients, when care in the community would be preferred for a number of clinical reasons. Where I feel the comparison falls flat is that I do not think that it is possible to measure outcomes for living well with dementia easily. Sure, I have writen on metrics used to measure living well with dementia, drawing on the work of Sube Banerjee, Alistair’s predecessor. It might be possible to correlate good control with a blood test value such as the HBA1c, and it steers the reward mechanism of the NHS for rewarding clinicians for failure of management (e.g. laser treatment in the eye, foot amputation, renal dialysis), but the comparison needs some clinical expertise to be pulled off properly. The issue of breaking down ‘barriers’ between primary and secondary care is an urgent issue, and ‘whole person care’ or ‘integrated care’ may or may not help to facilitate that. But a future government must not get too enmeshed in sloganising if it means forgetting basic requirements of foot soldiers on the ground, such as specialist dementia nurses including Dementia UK’s ‘Admiral nurses’.

But the question of who gives the correct diagnosis of dementia, or even verifies it, won’t go away.

Having done Dementia Friends myself, a Public Health England the Alzheimer’s Society joint initiative, I feel the initiative is extremely well executed from an operational level. I think it’s pushing it for a member of the public to think that an old and doddering lady crossing the lady might have dementia and requires help, as medicalising ageing into dementia is a dangerous route to take. The £2.4 million programme is funded by the Social Fund and the Department of Health. Public Health England are planning to undertake an evaluation of the Dementia Friends Campaign launched on 7 May 2014, which will include tracking data and prevention message testing.

There are a number of important clinical points here. There are crucial questions as to whether persons themselves with a possible diagnosis, friends and/or families themselves want a diagnosis of dementia. A diagnosis of dementia in anyone’s book is a life-changing event. The concerns of the medical profession have been effectively rehearsed.  Notwithstanding, the ambition that, by 2015, two thirds of the estimated number of people with dementia should have a diagnosis, with appropriate post diagnostic support has been agreed with NHS England.  To support GPs and other primary care staff, a Dementia Roadmap web-based tool has been commissioned by the Department of Health from the Royal College of General Practitioners. The roadmap has now been officially launched, and will provide a framework that local areas can use to provide local information about dementia from health, social care and the third sector to assist primary care staff to more effectively support patients, families and carers from the time of diagnosis and beyond. Feedback from relevant stakeholders will be most interesting.

People with dementia need to be followed up across a period of time for a diagnosis of dementia to be reliably made, and ‘in the right hands’, i.e. of a specialist dementia service. Whilst NHS England are working with those areas with the longest waits, with the aim of ensuring that anyone with suspected dementia will not have an excessive wait for a timely assessment, there has to be monitoring of who does that timely assessment and whether it produces an accurate result. At an extreme example, clinical diagnoses of rarer dementias, particularly younger onset, can only be done effectively by senior physicians with reference to two clinical histories, two clinical examinations, neuroimaging (e.g. CT, MRI, or even fMRI or SPECT), lumbar puncture/cerebrospinal fluid (if not contraindicated), cognitive psychology, EEG, or even – extremely rarely – a brain biopsy. But this would be to propose an Aunt Sally argument – many possible cases of dementia can be tackled by primary care with appropriate testing perhaps in the future, and certainly adequate resources will need to be put into primary care for training of the workforce. Or else, it is literally a ‘something for nothing’ approach.  Some people have ‘mild cognitive impairment’ instead, and will never progress to dementia.There are 149,186 dementia friends currently. This number is rapidly increasing. The goal is one million.Furthermore, there are many people given a diagnosis of dementia while alive who never have it post mortem. And the diagnosis can only be definitively made post mortem. Seth Love’s brilliant research (and he is an ‘Ambassador’ to the Alzheimer’s BRACE charity) is a testament to this. Anyway, NHS England and the Department of Health are working with the Royal College of Psychiatrists to encourage more Memory Services to become accredited.

And when is screening not officially screening? This continues to require definition in England’s policy. The original Wilson and Jungner (1968) principles have appear to have become muffled in translation. The CQUIN has led to over 4,000 referrals a month, but this will only contribute to improving diagnosis rates for dementia if this is not producing a tidal wave of false positives. For quarter 3 2013/14, 83% of admitted patients were initially assessed for potential dementia. Of those assessed and found as potentially having dementia, 89% were further assessed. And of those diagnosed as potentially having dementia, 86% were referred on to specialist services. But we do need the final figure. This policy plank for me will also go back to the issue of whether policy is putting sufficient resources into the diagnostic process and beyond. Stories of people being landed with a diagnosis out of nowhere and given not much further information than an information pack are all too common. A well designed system would have counselling before the diagnosis, during the diagnosis, and after the diagnosis.

Ideally, an appointed advisor would then see to continuity of care, allowing persons with dementia to be able to feel confident about telling their diagnosis to friends and/or family. The advisor would ideally then give impartial advice on social determinants of health, such as housing or education. Policy may be slowly moving in this direction. In April 2014 NHS England published a new Dementia Directed Enhanced Service (DES) for take up by GPs to reward practices for facilitating timely diagnosis and support for people with dementia. Patients who have a diagnosis of dementia will be offered an extended appointment to develop a care plan. The care planning discussion will focus on their physical and mental health and social needs, which will include referral and signposting to local support services. From 10 signatories in March 2012, to date, there are now 173 organisations representing nearly 3,000 care services committed to delivering high quality, personalised care to people with dementia and their carers.

But all this requires money and skill. There is no quick fix.

The areas of action for the Prime Minister’s Dementia Challenge are: dementia friendly communities, health and care and improving research.

In November 2012, The Secretary of State for Health announced a £50 million dementia-friendly environments capital investment fund to support the NHS and social care to create dementia-friendly environments. The term ‘dementia friendly communities’ is intrinsically difficult, for reasons I have previously tried to introduce. A concern must be the ideology behind the introduction of this policy in this jurisdiction. The emphasis has been very much on making businesses ‘business friendly’, which is of a plausible raison d’être in itself.  This, arguably, is reflected in the list of chief stakeholders of the dementia friendly communities champion group.

Dementia friendly communities board

It happens to fit very nicely with the Big Society and the ‘Nudge’ narrative of the current government. But it sits uneasy with the idea that it is in fact a manifestation of a small state which bears little responsibility apart from overseeing at an arm’s length a free market. The critical test is whether this policy plank might have improved NHS care. 42 NHS and 74 Social Care National pilot schemes were approved in June 2013 as national pilots. Most of the projects have now been completed, and they will be evaluated by a team of researchers at Loughborough University over the coming months. The evaluation will provide knowledge and evidence about those aspects of the physical care environment which can be used to provide improved care provision for people with dementia, their families and carers. But the policy has had some very exciting successes: for example the ‘Sporting Memories Network’, an approach based on the neural re-activation of sporting autobiographical memories, recently scooped top prize for national initiative in the Alzheimer’s Society Dementia Friendly Communities Awards 2014.

And meanwhile, the care system in England is on its knees. Stories of drastic underfunding of the care system are extremely common now. An army of millions of unpaid family carers are left propping up a system which barely works. There appears to be little interest in guiding these people, with psychological, financial and/or legal burdens of their own, to reassure them that all their hard work is delivering an extraordinary level of person-centred care.

But this for me was an inevitable consequence of ‘corporate capture’. The G8 World Dementia Council does not have any representatives of people with dementia or carers.

That is why ‘Living well with dementia’ is an important research strand, and hopefully one which Prof Martin Rossor and colleagues  at NIHR for dementia research will give due attention to in due course. But all too readily research into innovations, ambient assisted living, design of the ward, dementia friendly communities, assistive technology, and advocacy play second fiddle to the endless song of Big Pharma, touting how a ‘cure’ for dementia is just around the corner. Yet again.

So what’s the solution?

The answer lies, I feel, in particularly what happens in the next year and beyond.

The Prime Minister’s challenge on dementia was developed as a successor to the National Dementia Strategy, with the challenge of delivering major improvements in dementia care, support and research. It runs until March 2015. Preparatory work to produce a successor to the Challenge from the Department of Health (of England) is now underway in order that all the stakeholders can fully understand progress so far and identify those areas where more needs to be done. The Department of Health have therefore commissioned an independent assessment of progress on dementia since 2009.

There are a number of other important pieces of work that are underway, which will provide information and evidence about progress and gaps. For example, according to the Department of Health, the All Party Parliamentary Group on Dementia chaired by The Baroness Sally Greengross OBE are producing a report focused on the National Dementia Strategy, and the Alzheimer’s Society has commissioned Deloitte to assess progress and in the autumn will be publishing new prevalence data. Indeed the corporate entity known as Deloitte Access Australia (a different set of management consultants in the private sector) produced in September 2011 a report on prevalence of dementia estimates in Australia. Deloitte themselves have an impressive, varied output regarding dementia. But of course they are not interested in dementia solely. “Deloitte” is the brand under which tens of thousands of dedicated professionals in independent firms throughout the world collaborate to provide audit, consulting, financial advisory, risk management, tax, and related services to select clients.

But also it appears that the Alzheimer’s Society, working with NHS England, has commissioned the London School of Economics to undertake a review into the accuracy of dementia prevalence data. The updated data is expected to be published in Autumn 2014. Apparently, once all this work has been concluded a decision will be made on the focus and aims of the successor to the PM’s challenge.

The current Coalition government has been much criticised in parts of the non-mainstream media for the representation of corporate private interests in the Health and Social Care Act (2012).

I believe people who are interested in dementia, including persons with dementia, caseworkers and academics, should make their opinions known to the APPG in a structured articulate way in time. I think not much will be achieved through the pages of the medical newspapers. And only time will tell whether the new dementia strategy will emerge in time before the next general election in England, to be held on May 7th 2015. However, even the most ardent critics will ultimately. The present Government should be congratulated for having made such a massive effort in educating the country about dementia, which is a necessary first step towards overcoming stigma and discrimination. The Alzheimer’s Society has impressively delivered its part of it, it appears, but future policy will benefit from much more ‘aggressive inclusion’ of other larger stakeholders (e.g. the Joseph Rowntree Foundation, Dementia UK) and smaller stakeholders.

And special thanks to Alistair Burns, England’s clinical lead for dementia, a Chair at Manchester, and much more.

It could be a case of: all change please. But a huge amount has been done.

Share This:

     blog (1)     

"Drop in centres". Definitely "one to watch" in the new English dementia strategy.

Access to any sort of dementia service has become the focus of scrutiny in the English dementia strategy.

For example, NHS Bristol and Bristol City Council Health and Social Care have produced a strategy document entitled ‘Living well with dementia in Bristol’ to run 2011-2015. They helpfully provide the following table on page 32.

dropin

There is considerable interest in how much ‘support’ can be provided by the NHS and social care providers, and how much can be provided by charities and other voluntary entities.

A major faultline in policy is how the third sector can lower the barriers to entry for ‘other providers’ for dementia awareness, other than the usual suspects. There is a growing momentum that any awareness is to be welcomed, wherever it comes from, but ultimately this awareness should not be for knowledge for its own sake, but should be an application to encourage inclusivity.

And all services can be a bit rushed, especially any services, medical or legal, where the end point of funding is activity-based. But conversely what people with dementia and those closest to them, whether in an official caring rôle or otherwise, invariably mention is the need for time and patience.

“Drop-in centres” have attracted much interest of late.

They offer emotional support, companionship and practical advice to people, including individuals with dementia who wish to live well independently in the community.

They’re generally run by voluntary organisations, local councils and day centres. Drop-in centre sessions usually run for a few hours at a time, one or more times a week.

The volunteers at drop-in centres are generally there to listen and provide support to those who come along, as well as to encourage people to make friends and take part in activities that interest them. Activities are especially promoted in the NICE Quality Standard 30, a strategy document which has as its aim supporting people to live well with dementia. Activities can include things like games and quizzes, arts and crafts, exercise and relaxation classes. There might also be TV, computer and internet facilities. Some drop-in centres offer educational and life-skills workshops, on topics such as developing confidence.

Individuals who use drop-in centres often have opportunities to help make decisions about how the centre is run even, and decision-making, choice and control have become key planks of dementia whichever political party is in office.

The overall aim is to provide a friendly, relaxed and unthreatening atmosphere.

Drop-in centres support people with a very wide range of needs, including older people, young people, people with learning disabilities, deaf or blind people, refugees and asylum seekers, or People facing specific health conditions such as cancer

Many drop-in centres are also open to carers, which may include families and friends of people who have these kinds of support needs. Many people in some sort of ‘caring rôle’ do not consider themselves ‘carers’, numerous successive studies find.

Drinks and snacks are often available at drop-in centres and some also offer hot meals. Some centres can help arrange transport for people who find public transport difficult to use.

And ‘drop in’ approaches might be particularly positive for people living with dementia. Often people living with dementia find the diagnosis stigmatising, but invariably people living with dementia on receiving a diagnosis still wish to live life to the full.

There are lots of services available for people living in the community who would like companionship or support during the daytime. Day centres open for longer hours than drop-in centres and offer support to older people and adults with disabilities or mental health problems. There are lunch clubs for older people too. If you feel lonely or cut off from others in the community, or can’t leave your home very often, then you might like to benefit from “companion and befriender services” arranged through the drop-in mechanism.

‘Drop in centres’ have developed a momentum of their own in England. For example, Age UK Shropshire Telford & Wrekin have opened five Diamond Drop In Centres to support local people with dementia and memory difficulties, their families, carers and friends. Previously it was reported that carers in Faversham have access to a drop in centre in their own locality. This Kingsfield team had created the drop-in service to offer support and information for both their residents’ relatives and people in the local community who are caring for someone with dementia.

Norman McNamara, Founder of Purple Angels, announced this morning that there might be plans to launch a drop in centre in Exeter. Norman admitted to being ‘quite tearful’ at having organised a previous ‘Day Lewis – Purple Angel’ drop in centre, particularly of the busy nature of the location. But it is well known that Norman McNamara has achieved an enormous amount through a remarkable amount of personal determination, as he lives with a type of dementia called diffuse Lewy Body type. This all is a noteworthy development of a campaign which ‘thinks global acts local’. Their ‘global’ website is here.

Norman3

Now it turns out that “Barchester” is in full support of the Purple Angel campaign. Norman had started this campaign in Torbay – an area with a solid reputation as a retirement destination. He began by generating awareness about dementia with local businesses and soon his iconic Purple Angel stickers started appearing in shop windows around the district to show solidarity and understanding of living with dementia

Norman 2

Many hope that ‘drop in centres’ will feature in the new English dementia strategy 2014-9.

Share This:

     blog (1)     

An innovative programme to encourage extensive knowledge sharing: the HE KSS/BSMS Primary Care Dementia Fellowship Programme

The HE KSS/BSMS (Health Education Kent Surrey and Sussex / Brighton and Sussex Medical School) have launched the “Primary Care Dementia Fellowship Programme”.

This is a programme for GPs, practice nurses and staff, and community nurses in Kent, Surrey and Sussex.

(Health Education Kent Surrey and Sussex will provide the funding to release Fellows to attend a regional skills development programme that will run from March to September 2014.

The Fellows will join with doctors and nurses from Kent, Surrey and Sussex (KSS) to build the knowledge and skills needed for them to create better dementia services in KSS.

Prof Sube Banerjee and Breda Flaherty of Brighton and Sussex Medical School (BSMS) are leading this initiative based on their successful experience in the NHS London Deanery.

It appears that the main aim is to build a network of Fellows who can act as ‘change catalysts’ (my words not theirs), to spread best contemporaneous practice in dementia care.

It’s important as dementia is one of the top five strategic priorities in the KSS Skills Development Strategy.

Modules will be led by Banerjee and Flaherty, with contributions from clinical experts in dementia; colleagues in social care; people in the care home sector; NGOs; persons living with dementia and carers; specialists in service development; commissioners and researchers.

I believe that such a course will have considerable competitive advantage in being totally disruptive in how traditional training for juniors in dementia is conducted.

The value is clearly in the collaborative ties between members of the network. By lowering the cultural barriers in this way, the team at Sussex have something very special here.

The set-up is perfect for boundary-less knowledge sharing, and this is enormously value as we all get to grips with what the priorities in local and national policy in dementia might be.

There are three modules running from March to June: good practice in dementia assessment and care, good practice in dementia, and changing practice.

These are followed by a ‘Next Steps’ conference and a period of evaluation and research.

Such an approach might become paradigmatic for future learning in the NHS in dementia.

 

Share This:

     blog (1)     

The real influencers of English dementia policy aside from #G8dementia

top 100

In a rather strange Stakhanovite way, certain health magazines are strangely obsessed with the fetish of the ‘top 100’. I am as such not a great advocate of, “Everybody has won, and all must have prizes.” immortalised by Chapter 3 of Lewis Carroll’s Alice’s Adventures in Wonderland, but as someone who has devoted all of his entire life to dementia academia I do find somewhat curious (to put it politely) the judgments of those outside the dementia field about who are most influential to other people outside the academic dementia field, in their “world of dementia”. However, corporates need ‘symbols’ of their ‘success’ to attract inward attention and investment, so I’ll simply leave them to their own pathetic whims.

The issue of who “influences” a given network is currently of huge interest in modern ‘actor network theory’ (ANT). ANT was first developed at the Centre de Sociologie de l’Innovation of the École nationale supérieure des mines de Paris in the early 1980s by staff and visitors. Network thinking has contributed a number of important insights about social power. Perhaps most importantly, the network approach emphasises that power is inherently relational. An individual does not have power in the abstract, they have power because they can dominate others.

Network analysts often describe the way that an “actor” is embedded in a relational network as imposing constraints on the actor, and offering the actor opportunities. Actors that face fewer constraints, and have more opportunities than others are in “favourable structural positions”. Having a favoured position means that an actor may extract better bargains in exchanges, have greater influence, and that the actor will be a focus for deference and attention from those in less favoured positions. However, a key deference is that the people mentioned below do not consider themselves as requiring deference or attention. Their devotion to the living with the dementias is crystal clear. There can of course be “inhibitors”. We all know who they are: they actively stifle the activities of some members of the community.

There are many laboratories around the world which publish widely in the world on cognitive and behavioural neurology: how people think, and the brain processes involved. Of the off top of my head, I can think of Prof Bruce Miller at the University of California and San Francisco, Prof Martin Rossor at the National Hospital for Neurology and Neurosurgery and University of London (UK), Prof Facundo Manes at Favorolo Hospital, Argentina, Prof David Neary at the University of Manchester (UK), and Prof John Hodges of NeuRA, Australia.

There are of course people in fields to do with living well, for example defining wellbeing, measuring wellbeing, assistive technology, ambient assisted living, design of the home, design of the ward, and design of the built environment. Research in all these areas in English dementia policy is currently extremely important. I would go so far as to say that the people successfully working in, and publishing on, these areas around the world are much more important than the health ministers and corporate representatives who spoke at the ‘G8 dementia’ conference last week.

One person who does deserve a special mention though, even though all must have possibly have prizes, is Beth Britton. Beth’s interview captured attention at last week’s #G8dementia, and rightly so. Beth’s father had vascular dementia for 19 years. It began when Beth was around 12 years old, and would go on to dominate Beth’s life in her teens and twenties. Her father, whom she clearly adores, went for ten years without a diagnosis and he then spent none years in three different care homes. He passed away in April 2012, aged 85.

Norman McNamara from Devon was diagnosed with dementia a few years ago when he was just 50. After his diagnosis, Norman, from Torquay, began blogging online about his experiences and during a phone call with a friend he had the idea of organising the first Dementia Awareness Day on 17 September 2011. Norman particularly is really helpful in offering insights about what it’s like to ‘live with dementia’. In his recent blogpost, for example, he talks about how he doesn’t wish to be seen as being on some ‘journey’. He talks poignantly about how he is ‘living with’ dementia, not ‘dying from’ dementia, stating correctly that we are all in fact dying if one took this approach.

Kim Pennock, from Thornton-le-Dale, gave up her part-time job at Beck Isle Museum to help care for her mother who has the dementia of the Alzheimer type. Kim has become one of only 50 worldwide ambassadors for a pioneering new project to make communities safer for people with dementia. When her mother was first diagnosed, Kim said the family found it almost impossible to find the information and help they needed. Conversely, Lee set up the incredible ‘Dementia Challengers’ website to help people with dementia and the carers the right info they need to help them to live well.

In Australia, Kate Swaffer is committed to meaningful dialogue with a wide range of stakeholders about the critical issues impacting a person living with a diagnosis of dementia and their loved ones. When a person with dementia ‘comes out’ about their diagnosis, and openly admits they are living with the symptoms of, and diagnosis of dementia, there are a number of reactions and responses. Kate is one of the world’s most powerful advocates for dementia and the elderly, living well with a diagnosis of dementia; and she describes herself on Twitter (@KateSwaffer) as an “author, poet, blogger, and always trying to be a nice person”.

Back in the UK, Fiona Phillips speaks directly from her first hand experience as her mother had Alzheimer’s until her death in May 2006 and her father, who was diagnosed with the disease shortly afterwards, died in February 2012. In January 2009, Fiona presented Mum, Dad, Alzheimer’s and Me, an incredibly moving “Dispatches” documentary on Channel 4, featuring Fiona talking candidly about her struggles caring for both her parents during their respective illnesses and investigating the difficulties faced by people with the dementia of the Alzheimer type, and their families to get adequate care and support. Fiona has written a book “Before I Forget”, about her relationship with her parents and their dementia.

There are certain people who do understand particular areas of dementia policy and education. Lucy Jane Marsters is one such example, being a specialist nurse. Gill Phillips has also been pivotal in raising awarneness, generally, of the significant to personal-centred approaches in questioning quite deeply entrenched assumptions. There are also some brilliant people in innovations, such as Mike Clark, Prof Andrew Sixsmith and Prof Roger Orpwood in telemedicine and telehealth. Activities and healthy living communities are also extremely important; despite challenges in funding, like many in the dementia world, Simona Florio has been utterly resolute in supporting members of the excellent Healthy Living Club in Stockwell.

For years, magnificent Scot Tommy Whitelaw travelled the world running global merchandising operations for the Spice Girls, Kylie and U2. However, over the past few years he had become a fulltime carer my late mum, Joan, who had vascular dementia. His motivation as a carer came from the love he had for his own mum, and his experience has shown me just how tough it is to live with dementia and how many struggles it can bring. For the last year, he has been collecting carer’s life stories to raise awareness. Tommy is now working on The Dementia Carers Voices project with the Health and Social Care Alliance which will build on my ‘Tommy on Tour’ campaign by engaging with carers, collecting their life stories and raise awareness amongst health and social care professionals on both dementia and caring.

Caring for someone with dementia clearly infuses some with an incredible passion for the subject which you simply is hard to match. Sally Marciano has talked openly about supporting her mum supporting her father who later died of a dementia. She has talked openly about how the system didn’t work properly, but is very constructive about raising awareness and educational skills in the healthcare sector.

In March 2013, filmmakers and scientists come together at an event to increase the public understanding of dementia. A series of short films about dementia was presented by James Murray-White, will precede a discussion with researchers from the University of Bristol and other institutions supported by “Alzheimers BRACE”, a local charity that funds research into Alzheimer’s disease and other forms of dementia. James’ activities include being a freelance writer, journalist, reviewer, and filmmaker. James was in fact featured in last week’s #G8dementia media coverage.

Sarah Reed’s mother had Alzheimer’s disease for ten years. As a result of this, she became passionate about the quality of life of older people, especially those with dementia.

 She left a design career to found “Many Happy Returns” in order to innovate, research and develop evidence-based products to connect young and old, especially those with dementia, more meaningfully. Her goal has to change the experience of dementia for those who have it for the better, by persuading care organisations and carers everywhere that good care counts for nothing without good communication – and then helping them to deliver it.

And of course there are some brilliant influencers in the world of medicine who don’t simply regurgitate the copy fed to them. Dr Peter Gordon has produced a number of original films and articles about the ethics of the diagnosis, particularly the need for a ‘timely’ rather ‘early’ diagnosis, and potential conflicts of interest between the medical profession and the pharmaceutical industry. Dr Martin Brunet has likewise become massively influential in articulating the debate, especially, from the medical profession’s perspective of a policy ‘target’ to increase diagnosis rates. While Martin’s work is not easy, his perspective and substantial experience as a GP is invaluable, particularly in redressing other people’s motives which can too easily be too motivated by surplus and profit.

And, of course, a top influencer, even though ‘all shall have prizes’, is Prof Alistair Burns. Alistair is the clinical lead for dementia in England, and has a highly influential position in NHS England. Alistair clearly has a number of different stakeholders with which he needs to have a fair legitimate discussion about English policy. He has nonetheless steered the policy through rather turbulent times. As a senior academic and person within higher education, and someone who clearly has a very ‘human perspective’ too, his contribution to English dementia policy has been much valued and much appreciated.

Actually, I’m being totally ingenious. Most of us are actually one big happy family in the network I’m in. We have our disagreements, but we value each other. We don’t inhibit one another (which is what can go wrong with networks). For a list of #dementiachallengers, please go to the list in the top right corner of this blog. You’ll see for example Charmaine Hardy, who cares for, and adores, her husband who has a very rare form of dementia called primary progressive aphasia. Though having a well deserved break for once in Norway, for once, you can catch her on Twitter!

Share This:

     blog (1)     

My personal view of the importance of high quality #research in dementia for the #G8summit

Dementia research

I have a foot in both research camps.

I believe in good quality research about the ‘medicine’ of dementia.

In the world of research, I am known to have contributed an original paper in the diagnosis of the frontal-variant of frontotemporal dementia.

This paper explained why people with a dementia could even end up having a diagnosis of this type of dementia, even though presenting in clinic with normal blood tests, psychological tests or brain scans.

Such patients did, however, have profound changes in behaviour and personality noticed by their closest ones, usually friends and family.

The paper itself has been quoted in the current Oxford Textbook of Medicine chapter reviewing the most common types of dementia, their diagnosis and management.

I do however have academic views on the importance of the ‘timely’ correct diagnosis of dementia, rather than early diagnosis.

I never give advice about anything on Twitter, as I am not a physician, but it is nice when what you say has an impact on general education of people about dementia.

I can be found on both @dementia_2014 and my other Twitter account (as I am trained in academic law as well as research in dementia) @legalaware.

Take for example how depression can be in the wrong hands misdiagnosed as dementia.
Shibley

This is an example, perhaps, of where a diagnosis is a label, and disabling not enabling.

But for very many a correct diagnosis of a type of dementia will be a key to the door for opening up the relevant care.

I feel that, whatever the ‘fiscal constraints’ the NHS finds itself in now and the future, despite the argued need for transformational change in NHS services, people with dementia should be at some stage diagnosed by somebody with specialist medical experience.

This is reflected here in a recent excellent article in the Telegraph.

The other camp is this, and oddly enough there is some overlap in my wish for people with dementia to be given the highest priority in society.

I also firmly believe in good quality research of allowing people to live as best a life they can.

This is intensely personal, as I am physically disabled, and I am all too aware about how people can make crash judgments of you.

I am about to publish a book on ‘Living well with dementia’ on January 13th 2014.

I am honoured to be well respected by academics in the field of dementia, including Prof Alistair Burns the current lead for dementia in England.

Burns tweet

I thrive from the research contributions daily all around the world in research into dementia.

I would like to see the UK play a part in leading the research community about all aspects, including the medicine of the condition itself, its possible cure one day, and current practical help in improving quality of life.

Finally, I think with the current academic community in the UK in dementia, the UK can and should achieve this.
Human brain

Share This: