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Clinical nursing specialists for dementia put the precise rôle of the third sector to the test

December 5, 2014 3:51 am / Leave a Comment

Ed Miliband, most people agree, is set to be the leader of the largest party at Westminster next year at least. This would give him overall charge of the legislature and the executive on 8 May 2015.

He has also pledged to produce 20,000 extra nurses, though talk is cheap. George Osborne has failed on virtually all ambitions that were set for the economic performance of the current Government. The Conservative-Liberal Democrat coalition therefore bequeath the next Government with a society with a terrible frail economy.

This UK economy is essentially a bargain basement one. It is easy to spot the major fault with ‘the record number of jobs’ meme, as the actual till receipt income is very low. And yet the Conservative want to pay for tax cuts – we’ve gone from an over bloated state to an under nourished one.

I had the enormous pleasure, with two other Dementia Friends Champions Chris Roberts and Jayne Goodrick, of giving a Dementia Friends information session at my law school yesterday. I can’t praise enough the amount of support we were given from the people who run Dementia Friends.

Forgive my photography. I am no David Bailey*. We actually had a good turnout, but I managed to capture the part of the audience which was very lean. Chris Roberts (@mason4233) lives well with a mixed type of dementia, thought to be a mixed Alzheimer’s disease and vascular dementia.

Somebody came up to me at the end of the audience and said, “It was absolutely brilliant as it was just incredible to see for my own eyes somebody living well with dementia.”

The “Dementia Friends” initiative has been a successful one. From the Alzheimer’s Society, and supported at a distance by Public Health England, it is modelled on the Japanese ‘caravan befriending’ movement. Its aim in policy terms was to break down the stigma, prejudice and discrimination which can happen against people living with dementia. These factors can contribute to the social isolation often experienced by people on receipt of a probable diagnosis.

“Dementia Friends” has been brilliant for myth busting, with actual facts about dementia too.

Recently, Kate Swaffer (@KateSwaffer), leading international advocate living well with dementia, and working with Alzheimer’s Australia, leading for the Dementia Alliance International, met Dennis Gillings this week in a small group of people for dinner. Gillings is the newly appointed World Dementia Envoy.

For reasons which are completely inexplicable, there is no established substantial representation on that panel from the communities of people living with dementia or caregivers, although Hillary Doxford was documented in the Communiqué of the last meeting just gone.

When Dennis met Kate recently, Kate quipped, typically characteristically in a beautiful tongue-in-cheek manner, she had not ben dribbling into her soup (Kate’s blogpost here).

But “Dementia Friends” is an interesting example of a private-public initiative with a £2.4 million funding base. Had this been left entirely to ‘market forces’, it is unlikely there would have been national outreach for this unique project. Inevitably the topic in policy terms is whether the substantial cost of Dementia Friends is offset by the value of raising the profile of dementia and caregivers. Where it might fail on its outcomes, and time will tell, is how the pledges of turning communication into action are actually hard evidenced through the number of pledges (irrespective of whether it will hit its target of one million within an extended deadline of the end of 2015).

In my opinion, it has been.

Two days previously, I enjoyed being at the Methodist Central Hall for a day for the Dementia Action Alliance.

And yet it is also true that social care is on its knees.

You don’t have be a great story teller to communicate a tale of the NHS on its knees.

This is somewhat cognitively dissonant with MPs wearing their Dementia Friends badges with pride, one could argue.

I agree with Jeremy (tweet here) in that the third sector should not need to apologise for fundraising. Making a surplus for a charity is a raison d’être for a charity akin to the duty to maximise shareholder dividend for a business.

But larger charities share many operational and cultural characteristics with corporates conceivably, and therefore the principles of a good ‘corporate citizen’ could easily apply to large charities with substantial revenues.

Sube Banerjee, long time supporter of the Alzheimer’s Society, and, perhaps more significantly here, co-author of the previous 2009 English dementia strategy came to the Dementia Action Alliance table with some noteworthy criticisms of how the current strategy had been executed.

Firstly, Sube, now a Chair of dementia at the Brighton and Sussex Medical School, commented on the devaluing of the ‘cost’ of a diagnosis to £45, and commented specifically on the culture of a ‘high quantity low quality’ approach to diagnosis.

Indeed, the 2009 English dementia strategy, called ‘Living well with dementia’, refers to the need for high quality diagnosis.

And the English dementia policy as it was then, before it got taken over by the Prime Minister’s Dementia Challenge, due to expire next March 2015, also warned about the lack of post-diagnostic support.

People living with dementia, and their family members, have consistently remarked to me how they have been told by medical professions that their rôle is at the very start and very end of “the dementia journey”. They won’t be there for them in between.

We are all aware of recent findings that 9 out of 10 care homes failing to meet standards set by the regulator the Care Quality Commission, reported not just in the Daily Mail.

So there is an overwhelming sense that people with a possible diagnosis of dementia are being set up for a fall by an inadequate care system, which is disjointed, increasingly privatised, and undervalued.

One of the undesirable consequences of this bargain basement economy is the sheer undervaluing of paid carers on zero hour contracts, some not even getting any travel expenses or the national minimum wage.

This poses serious questions about us as a society. So does the lack of support we appear to be giving unpaid family caregivers, an army of which nearing a million are the backbone of the entire system.

But Jeremy’s tweet does also pose serious questions about what charities could or should fundraise for. I say this as I remember one of own interview questions to read medicine at Cambridge – which I did between 1993 and 2001 – “to what extent should charities take the place of a properly funded NHS?”

Well, this question has taken on a new twist. I do not see there to be a ‘competition’ as such between ‘dementia advisers’ of one charity and ‘specialist nurses’ from another third sector charity. I think they co-exist. ‘Dementia advisers’ are possibly more useful for the more independent parts of the support of “the dementia journey”. ‘Specialist nurses’ are pivotal at all parts, including the care part of ‘the dementia journey’.

It has struck me how not only cost effective clinical specialist nurses are, in providing proactive case management for people with dementia with personalised care plans, ‘nipping in the bud’ complications from medical conditions. I know internationally one of the campaigning for fundraising themes is the substantial co-morbidity of dementia. People living with dementia often have a plethora of other problems, such as in joints, heart or lung.

Sally Greengross has long made it been known that the post diagnostic support for dementia is not good enough. Sally Greengross is the current Chair of the All Party Parliamentary Group on dementia. Her predecessor, Jeremy Wright MP, currently the Government’s Attorney General, launched the highly successful policy here in England of an ambition to reduce the number of inappropriate prescriptions for antipsychotics predominantly in care homes.

Hospitals can be some of the worst places a person with dementia to end up in. Likewise, it shouldn’t be conceived that secondary hospital care is necessarily synonymous with someone who has ‘failed’ somehow. But, say, end of life nurses will be able to provide expert help, wherever the appropriate care setting is deemed to be for a person living with dementia (and his/her friends or family).

And it is therefore possible charities such as Dementia UK and others might be able to fill these gaps in service provision. For a start, clinical nursing specialists comprise an innovative way of delivering the dementia post-support service. And the NHS has a statutory duty to promote innovation.

However, I should say that that statutory clause (14X) on CCGs is from the much loathed Health and Social Care Act (2012), about to be repealed by the next Labour government.

It is sometimes the case innovation can be incubated in places other than the NHS, and we’ve already seen a lot of goodwill and real-life financial support for Macmillan nurses. It would be impossible now to think of palliative care for nursing in cancer to be without Macmillan nurses – and the prime contractor model could be a way of providing sustainability in critical areas of services. This is ONLY provided that the quality and cost effectiveness components are managed correctly and for the benefit of the taxpayer. The next Labour government wishes to bring out a huge systemic innovation of integrating health and care into whole person care. This is long overdue, as, for example, it is impossible in places to discharge NHS patients to social care in s timely fashion. This is not cost effective; it is insulting particularly to patients including frail old citizens who do not wish to be in hospital anyway, and do not deserve the pejorative insulting label of “bed blocker”.

I am sure Alistair (@ABurns1907), or whoever ends up predominantly penning the new English dementia strategy, will wish to give careful consideration to how this post diagnostic support can be provided. Jeremy has a point, but up to a point.

*Joke by @JayneGoodrick.

Why are peer support groups for people living well with dementia so relatively under-researched?

November 9, 2014 5:22 am / 2 Comments

There has been in recent years a developing cross-party consensus on the ‘personalisation agenda’ in health and care, despite a growing army of serious critics. Individualism however co-exists in policy with ‘collective spirit’, the latter for example most notably in the policy plank known as “dementia friendly communities”.

People helping each other is a good thing. And this is, of course, motherhood and apple pie stuff.

For example, Vissier and colleagues (2008) found, in their investigation, that only staff members who received peer support reported greater skills and knowledge, consistent with previous research findings demonstrating that effective peer support for practitioners can be very useful (Edberg and Hallberg, 2001).

It has also been argued that it can be helpful to prepare for “possible personal and emotional responses in conducting clinical research in dementia”, for instance by ensuring that peer support or supervision are available (Ablitt, Jones and Muers, 2009).

The opening paragraph of a paper looking at ‘support groups’ states openly that it did not wish to look at the issue of the composition of support groups in their study (Snyder, Jenkins and Joosten, 2007):

This survey did not attempt to determine who is appropriate for a support group or who may or may not benefit. Indeed, the study sample is biased by the sole inclusion of those who volunteer to attend a sup- port group and continue participation in the group because of some presumed positive experience. This survey does, however, provide insight into why participants continue to attend their group and what aspects of the experience are most valuable.

It is totally unsurprising that the group that has been researched the most comprehensively in peer-peer support comprises caregivers (e.g. Greenwood et al., 2013), although there has been excellent research recently published on volunteering mentoring schemes (Smith and Greenwood, 2014).

We have all seen the hyperbolic claims of wishing to improve global research.

For example, Alzheimer’s Research UK earlier this year made the following point.

The G8 Dementia Summit in December 2013 was effective at galvanising the international community and promising clear and decisive action to tackle dementia. The Summit saw international leaders launch the ‘Global Action Against Dementia’ initiative with the stated the aim of finding a disease modifying treatment or cure by 2025.

And, yes, a lot of money does get pumped into activity which is cellular-related.

But men are not simply collections cells in Petri dishes.

I was immediately attracted the other day to a Facebook group called the “Young Onset Dementia Group”. It’s here.

The Dementia Alliance International (DAI) is a non-profit group of people with dementia that seeks to represent, support, and educate others living with the disease. DAI provides an international and unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life for people with dementia.

The DAI gave a talk at the Alzheimer’s Disease International conference held in Puerto Rico this year May 1-4 2014. Their slides are helpfully uploaded here.

Online support groups have become a formidable force. Such “self-help groups” moderated by people with dementia and others; there are no caregivers. They can be an alternative to local support groups that don’t meet their needs, or in absence of a local group. Increasingly, people with dementia turning to social media to connect with one another.

Here is one experience from this group:

With just a couple of days to go, it gives, for example, details of a survey by the National Health and Medical Research Council. They looking for input from people diagnosed with dementia as well as care providers, medical practitioners, family and friends. If you have a few minutes spare and you’re Australian, please complete their survey because telling them what matters to you is so important.

Kate Swaffer (@KateSwaffer) has written about it here. Kate, of course, will be known to very many of you as a champion of change in Australia – and around the world, living well with dementia as a ‘consumer champion, the first ever consultant living with dementia appointed by the influential charity Alzheimer’s Australia.

Kate is well known for her campaigning for issues which people living with dementia wish to lead on. She is heavily AGAINST tokenistic involvement, as her powerful article on stigma and dementia-friendly communities in the prestigious Dementia Journal recently illustrates.

Every month the DAI meet for “Café Le Brain” – an online Memory Cafe that uses video conferencing technology to bring people together from far away. Together, they enjoy conversation, new ideas, support, and some fun. People living with and without the symptoms of dementia are welcome to attend.

The date of the next meeting is Wednesday, November 19, 2014, with a start time: 1 p.m. in Adelaide, Australia; 12:30 p.m. in Brisbane; 10:30 a.m. in Perth; 1:30 p.m. in Sydney; 11:30 a.m. in Tokyo.

If you’re eligible to join, please go to their EventBrite page here.

The Café runs for approximately 90 minutes. To find out the start time in your city, click here. The hosts of that Café will be, on this occasion, Kate Swaffer, Secretary of Dementia Alliance International, Mick Carmody and Gayle Harris, Dementia Alliance International members.

In all honesty, however, it has struck me how there are peer-support groups, fairly well researched (but not extensively researched), where the peers are Doctors or caregivers; but there is virtually no published research on people living with dementia peer mentoring other people living with dementia. This is of course a complete travesty.

For a start, large corporate-like charities in dementia are pump priming lots of money every day into glossy reports on loneliness. And yet the money that goes into high quality in living well with dementia sees this discipline as a very impoverished relation while the never-ending searching for cures that don’t work continue.

But peer support for people living well with dementia is important.

Such networks have worked particularly well for people living with young onset dementia. A number of well known groups are helpfully listed on a “Young Onset Dementia UK” website page.

“Truthful Kindness” (@TruthfulKindnes) is fast becoming a trailblazing leader. Her blog on living with dementia symptoms is widely read. Her “Person with dementia experience” is widely read.

These networks are not new, but operational difficulties in ownership of such groups have long been a problem. Such groups can easily be ‘harvested’ by people not living with dementia. They are ripe pickings, for example, by large corporate-like charities, and indeed Big Pharma. Notwithstanding that, there has been a long and distinguished past for example the “Dementia Advocacy and Support Network International” or DASNI).

Chris Roberts (@mason4233), after a protracted diagnostic experience, was eventually given a diagnosis of mixed dementia. Chris continues to share his observations of that experience of diagnosis itself in public, which has been of huge interest not only to others who’ve found themselves ‘in the same boat’. But this experience should also shame the medical profession into making the process of disclosure of a possible diagnosis of dementia much better than it currently appears to be from many service users of the health service.

And Chris mentions here the improvement in his own wellbeing from participation in “Dementia Friends”, an initiative where Chris gives information sessions on what dementia is to all members of the public; and, also, Chris speaks fondly of his participation in “Dementia Mentors”, a peer support online forum for people living with dementia, as well as his involvement with the Dementia Alliance International, where he is indeed a Board Member.

Both these videos were filmed by me at the recent Alzheimer’s BRACE event, “Hope for the future”, which took place in Bristol earlier last week.

I feel it is likely there is going to be much interest in peer support groups for people living well with dementia, whether corporate-like charities wish to research it or not. It’s going to be essential that the research field doesn’t compartmentalise themselves into silos. For example, a open paper entitled ‘Personalisation vs friendsourcing’ from makes for very interesting reading:

“When information is known only to friends in a social network, traditional crowdsourcing mecha- nisms struggle to motivate a large enough user population and to ensure accuracy of the collected information. We thus introduce friendsourcing, a form of crowdsourcing aimed at collecting accurate information available only to a small, socially-connected group of individuals. Our approach to friendsourcing is to design socially enjoyable interactions that produce the desired information as a side effect.”

Further readings

Ablitt A, Jones GV, Muers J. Living with dementia: a systematic review of the influence of relationship factors. Aging Ment Health. 2009 Jul;13(4):497-511. doi: 10.1080/13607860902774436.

Edberg, A., & Hallberg, I. R. (2001). Actions seen as demanding in patients with severe dementia during one year of intervention: Comparison with controls. International Journal of Nursing Studies, 38, 271–285.

Greenwood N, Habibi R, Mackenzie A, Drennan V, Easton N. Peer support for carers: a qualitative investigation of the experiences of carers and peer volunteers. Am J Alzheimers Dis Other Demen. 2013 Sep;28(6):617-26. doi: 10.1177/1533317513494449. Epub 2013 Jun 30.

Smith R, Greenwood N. The impact of volunteer mentoring schemes on carers of people with dementia and volunteer mentors: a systematic review. Am J Alzheimers Dis Other Demen. 2014 Feb;29(1):8-17. doi: 10.1177/1533317513505135. Epub 2013 Oct 1.

Snyder L, Jenkins C, Joosten L. Effectiveness of support groups for people with mild to moderate Alzheimer’s disease: an evaluative survey. Am J Alzheimers Dis Other Demen. 2007 Feb-Mar;22(1):14-9.

Visser SM, McCabe MP, Hudgson C, Buchanan G, Davison TE, George K. Managing behavioural symptoms of dementia: effectiveness of staff education and peer support. Aging Ment Health. 2008 Jan;12(1):47-55. doi: 10.1080/13607860701366012.

What happens after a diagnosis of dementia? My quick survey.

October 18, 2014 10:11 pm / 3 Comments

There’s been a lot of diagnosis on improving the diagnosis rates for dementia in primary care as a result of the Prime Minister’s Dementia Challenge.

This survey which you can take only once asks seven quick questions.

Each scenario is separate.

Choose the best option out of the choices given.

You can only choose one answer. There is no “correct” answer.

The questionnaire does not abruptly end. You need to scroll down to see beyond question 1.

Create your free online surveys with SurveyMonkey , the world’s leading questionnaire tool.

Transforming dementia care is long overdue. Specialist clinical nurses in dementia are now vital.

October 18, 2014 5:37 am / Leave a Comment

In the G8dementia, particularly by large corporate-like charities, dementia has been compared to the cancers. Whilst there are many problems with this comparison medically, the aim is for research and service expectations to be met in dementia on an equal footing to those for cancer. There are different types of dementia and different types of cancer, and there is, according to NICE, no current treatment for Alzheimer’s disease, the most common type of dementia globally, which slows the progression of disease. The aim however is undeniably a laudable one. In terms of service provision, the hope is that medical conditions can be detected early (and not at the last minute), and over time care and support can be introduced and implemented in a non-panicky way. The low hanging fruit is for providers at the front end of the service to game the NHS QOF/CQUIN system to design ‘innovative’ packages which might diagnose certain forms of dementia, such as the profound short term learning and memory problems in early Alzheimer’s disease. But getting out of this ‘quick fix’ mentality is going to be essential for the long-term sustainability of dementia services in England I feel. I believe strongly that clinical nursing specialists would not just be a big help here: they are indeed vital. England will really benefit from senior people in dementia taking the bull by the horns, in keeping with a refreshing approach to the long term conditions (LTCs) in general, as helpfully described by the King’s Fund in this policy pamphlet from 2010.

But I have now spoken to two very senior specialist clinical nurses in the NHS. One who has been at the heart of policy for nursing in the last few years, and the other one who has been at the heart of one of the top clinical firms in cognitive disorders here in London for a few decades. They both said exactly the same thing to me: “What we’re fed up about is the fast turnover of services and personnel within them. It’s difficult to find the same person twice. And we’ve got too many people signposting services, and not enough people providing frontline care.” There is undoubtedly a rôle for a trained person who can help to navigate a person with dementia and his or her caregivers around a profoundly complicated system. I’ve heard that “dementia advisers” can be brilliant at a local level, but can easily come to the limits of the skills they can sometimes offer. The system is too bitty and disorganised at the moment; and persons with dementia (some of whom who become ‘experts by experience) and caregivers have a key rôle in optimising design of service and revision provision for dementia in the future.

As a person progresses along “a dementia journey”, a term itself which attracts some considerable criticism, his or her own needs will tend to change from living well independently with dementia to benefiting from increasing levels of support, and then increasing levels of care. Two big events could happen along this ‘journey': the loss of decision-making ability (mental capacity), and the preference to move into a residential home of sorts. The timing of these events can be very hard for people with dementia or their caregivers to predict. There can also be worsening problems in communication between people with dementia and those closest to them, including friends and family. If a person living with dementia needs suddenly to enter hospital as a ‘crisis’ at 4 in the morning, he or she might be blue-lighted in with an infected full bladder causing a deterioration in cognition and behaviour, without a care plan in sight.

Diagnosing dementia is clearly not enough, but a timely diagnosis can be helpful. Professional physicians, nurses and other staff will always consider their professional including moral obligations in how likely the diagnosis is, how much a person wants the diagnosis, and how much to investigate a possible diagnosis. And there are too many cases of the possible diagnosis being given in a busy clinic, often summarised as an ‘information pack'; at worst, some people lost to the system for years before anything new happens.

It is likely that England will develop ‘integrated care organisations’. This does not involve building new departments and new buildings, but is a shift in organisational mindset such that GPs with a specialist skill in dementia service provision can work alongside other trained professionals and caregivers, with the person with dementia. This ‘working together’ is nothing new. It has been brilliantly described in the policy work of the Carers’ Trust in their recent documents ‘A triangle of care’ and ‘A road less rocky’. Caregiving can be intensely rewarding, but can also be hard work with caregivers having specific needs of their own. Caregivers will also be at the very heart of any personalised care plans. A professional who might be involved is a speech and language therapist. There is a national shortage of experienced speech and language therapists which is a tragedy as some forms of dementia, for example logopenic primary progressive aphasia, might be characterised by substantial problems in language in the relative absence of problems in domains such as episodic memory.

As a dementia progresses, a clinical psychologist will be in a brilliant position to work out why a person might have practical problems in real life due to identifiable problems in thinking, such as planning. A planning problem might be manifest as a person being able to make a cup of tea, or to organise a planning trip. Or, a clinical psychologist will be able to tell a team that what appeared to be an optician-related matter with eyesight is in fact a higher order perceptual problem as found in the rarer posterior cortical atrophy type of dementia (where memory can be normal early on.) An occupational therapist can use his or her own expertise here. Whichever way you look at it, dementia service provision needs are likely to be met from clinical teams who are an integral part of the ‘dementia friendly community’, who have been somewhat disenfranchised out of the conversation so far compared to high-street customer-facing corporates. Professionals, even in the context of meeting their regulatory obligations, have, I feel, a massive rôle to play in providing personal communities even if they do not assume legal duty of care. It is now known that activities can not only enhance wellbeing, but can also possibly slow the rate of progression (although the evidence base for this finding is not particularly robust yet.)

In the last few years, since the Health and Social Care Act (2012), was introduced, there has been massive turmoil in the National Health Service (NHS), leading at worst to fragmented services resulting from slick pitches from well funded private providers unable to deliver on their contracts. And yet if the NHS were given the correct management and leadership skills, they could be at the heart of providing world class care in dementia. Economies of scale, with free knowledge transfer, can be advantages of large organisations. Given that there are a million people in the next few years living with dementia, the NHS should be planning ahead for this, not just counting the number of new diagnoses as a manifestation of glorified bean-counting. The drive to diagnosis has been a classic example of where the target has become the means to an end in itself.

Earlier this year in July 2014, it was reported that cancer care in the NHS could be privatised for the first time in the health service’s biggest ever outsourcing of services worth over £1.2bn. The four CCGs were involved, which care for 767,000 patients, are also seeking bidders for a separate £535m contract to provide end-of-life care. Whoever wins the cancer contract will then have to “transform the provision of cancer care in Staffordshire and Stoke”. The prime provider will “manage all the services along existing cancer care pathways” for the first two years after which “the provider will assume responsibility for the provision of cancer care, in expectation of streamlining the service model”, according to details posted by the CCGs on the main NHS procurement website.

Macmillan Cancer Support were able to bring clinical nursing specialists (CNS) to the table: the “Macmillan nurses”. This robust model, which had proper financial backing, has proven to work extremely well in the cancer setting (some details are here). A massive contribution of the CNS is widely thought has been thought to be the “proctive case management”, and not only is this is sound clinical sense but could in the long run save the NHS millions, averting emergency hospital admissions which have been pre-empted. The case for proactive case management has also been established in other neurological conditions such as multiple sclerosis. CNS have been described well for the community, but also have a rôle to play in hospitals. Indeed, continuity of care between the community and hospital will be vital, not least because people living with dementia can find unfamiliar people and physical environments extremely distressing. Warrington has seen the introduction of designs which put people living with dementia at ease and the valuing of specialist trained staff. The service provision there is a beacon of success, and shows what can be done if the NHS has a vision and motivation to succeed in this.

CNS could have been a pivotal component of the answer given to Lorely Burt, Liberal Democrat MP for Solihull, this week to the Prime Minister in the weekly PMQs. But it sadly was not.

Clinical nursing specialists, including the well respected “Admiral nurses” from the ‘Dementia UK’ charity, have been recognised as being crucial to developing world class care in dementia too here from our own English nursing strategy. Over 4o00 have signed a petition for more Admiral nurses on the internet. A much under-reported item of research from the Centre for Innovation and Leadership in the Health Sciences at the University of Southampton, established improved clinical outcomes and significant return on investment from CNS in dementia. Again, work in progress suggests that the proactive case management approach has a lot to offer here. A paper from Prof Steve Iliffe and Prof Jill Manthorpe and colleagues is particularly noteworthy here. The beneficial impact of CNS in averting emergency admissions is being well described for cancer by Prof Alison Leary, Chair of Healthcare and Workforce Modelling, and colleagues (see, for example, here). If in the next five-year English dementia strategy there is a strong commitment to flagship clinical integrated services with well established and respected clinical nursing specialist models implemented, this could really revolutionise dementia service provision. And it’s now becoming increasingly that commonalities in what works well, especially in relation to involving caregivers, is working across a number of LTCs. This is a golden opportunity for senior policy specialists in dementia to put the emphasis on sustainable models of care rather than shiny box gimmicks, and to design a system which will be of real benefit to patients with dementia and their closest ones.

My research on #G8dementia and on markets for the @AlzheimerEurope conference 2014

October 11, 2014 4:09 pm / 1 Comment

I will be presenting two posters on attitudes amongst the general public towards the ‘G8 dementia’ event as it was then.

I was aghast that out of 75 web articles that the phrase “Living well with dementia” wasn’t used once.

There was a huge bias towards the medical model of dementia. Respondents overwhelmingly felt that the major beneficiaries of that event were large charities, politicians and Pharma, and the people who benefited least were the actual persons living with dementia and caregivers.

I am honoured to give one of the oral presentations.

Information asymmetry between insurance provider and person is a big source of problems. I will showing preliminary data that the two phenomena “moral hazard” and “adverse selection” are likely to be demonstrated in attitudes of people who had received a genetic diagnosis of dementia.

However, I will be raising awareness of the danger of a policy based purely on genetic risk and private insurance; without safeguards against genetic discrimination, such a policy would be likely massively to disadvantage individuals with a higher family-based risk of dementia.

I am hugely grateful to my Twitter followers for taking part in my online surveys.

I am, finally, hugely grateful to the individuals living with dementia and caregivers, as well as other members of the public, who continue to drive the work that I do in dementia.

Whole person care, not misleading campaigning, will be brilliant for dementia

October 1, 2014 9:07 am / 3 Comments

I believe that whole person care, to be introduced by the next Labour government, will be brilliant for bringing together health and care professionals with persons with dementia, and carers and support workers. But we should also be extremely vigilant of dodgy presentation of evidence being used ‘in the name of’ campaigning for my pet subject, dementia, I feel.

We keep on being told that the ageing population is one reason why we can no longer afford the NHS.

The clinical syndrome of dementia, for which advanced age is a risk factor, has therefore taken on a special significance in this context. Health policy gurus and politicians are seemingly having to find increasingly elaborate ways to force their agendas on an unsuspecting public. “The Shock Doctrine: The Rise of Disaster Capitalism” (2007), penned by the Canadian author Naomi Klein, argues that libertarian free market policies have risen to prominence in some developed countries because of a strategy by some political leaders. These leaders deliberately exploit crises to push through controversial exploitative policies while citizens are too emotionally and physically distracted by these crises to mount an effective resistance. Crises are, though, useful instruments for bringing about change.

Within the timescale of this parliamentary term, the Prime Minister’s Dementia Challenge (launched in 2012) has seen a torrent of newspaper headlines with sensational memes. They invariably depict some sort of crisis in projected numbers of people with dementia, and have helped Big Pharma with the task of campaigning for increased funds to find ‘a cure for dementia’. The memes have largely had twangs of crises. For example, ‘dementia is the “next time bomb”‘ was an early news story from 7 May 2012. This messaging has continued consistently since, with the latest popular meme being “soaring numbers diagnosed with dementia“. Indeed, only recently with the arrival of the “Dementia UK (second edition) report” presented in a conference in Central London, a press release was published stating “Alzheimer’s Society calls for action as scale and cost of dementia soars”. But this messaging has caused utter confusion and resentment amongst leading academics and practitioners in dementia. The cumulative effect, instead, of such headlines and articles in public health has been to produce a feeling of ‘moral panic‘. As rightly pointed out by Dr Martin Brunet in “Pulse Magazine”, a well respected commentator on dementia policy in English primary care, recent evidence suggests rather that that the prevalence of dementia in over 65s in 2011 is lower than would have been expected. This “CFAS-II study” from Cambridge, which was published last year in the Lancet, is widely quoted, comprehensively peer-reviewed, and is extremely well known amongst people working in this field.

This is all incredibly self-defeating, as the “Prime Minister Dementia Challenge” was intended to bring greater awareness of the dementias amongst the general public not least to tackle the stigma faced by people living with dementia in their everyday lives. But you have to wonder what the intention of this approach is in the long term? The final report from the Commission on the Future of Health and Social Care in England (“Barker Commission”) was published on 4 September 2014. It discusses “the need for a new settlement for health and social care to provide a simpler pathway through the current maze of entitlements”. Labour intends to introduce ‘whole person care’ in the next parliamentary term, and it could be that this “scorched earth” approach for dementia has served a useful function. “Whole person care” is their new “big idea“. The Barker Commission recommends moving to a single, ring-fenced budget for the NHS and social care, with a single commissioner for local services.

On page 9 of their final report, the ‘ultimate star prize’ is described, the personal budget:

“Personal budgets, and care in hospital and out of it, would be provided from a single, ring-fenced budget. There would be one budget and one commissioner for individuals and their families to deal with, in place of health, social care and, in the case of those aged over 65, the Department for Work and Pensions. Commissioners would be freed to acquire care designed around an individual’s need for support and health care, largely dissolving the current definitions of what is a health need and what is a care requirement.”

And this of course is nothing new: it has been in gestation for quite some time. I myself, in fact, wrote about personal budgets for ‘Our NHS’ in my piece ‘Shop til you drop?’ on 4 September 2013. It is said that Andy Burnham MP, Shadow State of Secretary of Health, “welcomes the Barker Commission“, but one wonders whether he wishes openly to support the more unsavoury parts. Labour is desperately keen to introduce its policy changes on integrated care, without them being seen as another “top down reorganisation”. Any public resistance to their flagship policy will be political dynamite. Labour is instead currently campaigning on an anti-marketisation and anti-privatisation slate, and has pledged to repeal the highly toxic Health and Social Care Act (2012) (“the Act”).

One significant part of this repeal will be the abolition of “section 75″ and its associated regulations, which introduced competitive tendering in commissioning as the default option for NHS procurement. Nevertheless significant faultines in policy, described elegantly by Prof Calum Paton in his pamphlet “At what cost? Paying the price for the market in the English NHS” for the Centre for Health and Policy Interest (February 2013), still exist. They also are at danger of persisting, even if Labour triumphantly repeals the Act. There is a danger that unless these other pro-marketisation strands are addressed first, such as the purchaser-provider split, the “whole person care” policy will become engulfed in an intensely neoliberal direction. The counterfoil to this from Labour would presumably be that whole person care does not require a market in the first place. For this, clearly, Labour must not inflict personal budgets. A further big concern of mine is simple: not only will current scientific research into dementia have been completely misrepresented in the popular press, but also the field of dementia will be used to provide the raison d’être for yet another upheaval in service change.

And that upheaval could witness yet another change from the founding principles of the NHS. It could also be one too many.

Trivialising dementia – too much inappropriate rocking of the boat?

September 21, 2014 5:05 am / 1 Comment

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.

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.

Meeting the needs of persons with younger onset dementia and their supporters

September 18, 2014 12:12 pm / 2 Comments

There are many different types of dementia. I happen to believe it’s possible to live well with dementia.

That’s why I wished to travel to Robertsbridge from London Charing Cross to see Charmaine and family, and to give her a copy of my book which I had promised her.

“Living well with dementia” is also the name of the current (five year) dementia strategic framework for England, which is about to be renewed.

The ‘behavioural variant’ of frontotemporal dementia is normally a dementia which occurs in younger people (below the age of 65), with quite a subtle progressive change in behaviour and personality noticed by others.

Early on, in this condition, problems in short term memory and new learning are not in fact common, leading many persons with this dementia to score very highly on the MMSE screening test.

Meanwhile, the ‘temporal variant’ of frontotemporal dementia encompasses several different subtypes.

Primary progressive aphasia (PPA), one of these subtypes, is a language disorder that involves changes in the ability to speak, read, write and understand what others are saying. It is usually acknowledged to be properly described by Mesulam.

Problems with memory, reasoning, and judgment are not thought to be usually apparent at first, but can develop over time.

It is associated with a disease process that causes atrophy in the frontal and temporal areas of the brain, and is distinct from aphasia resulting from a stroke.

In 2011, criteria were adopted for the classification of PPA into three clinical subtypes: nonfluent/agrammatic variant PPA, semantic variant PPA and logopenic variant/phonological PPA.

Therefore the frontotemporal dementias are not usually, early on, characterised by problems in memory for events and facts.

PPA can, as it progresses, be accompanied with anxious behaviours manifest as obsessive-compulsions.

The ‘Dementia Research Centre’ (part of University College London, to which the National Hospital for Neurology and Neurosurgery and Institute of Neurology are associated or attached) hosts a number of superb support groups.

The PPA Support Group holds a number of support groups at regular time intervals. Their newsletter from August 2014 is here.

The convener is Jill Walton, at jill.walton@ftdsg.org.

I attended yesterday’s meeting.

My close #Twitter pal Charmaine, @charbhardy (Charmaine Hardy), invited me down to Robertsbridge, East Sussex, for Wednesday September 17 2014 from 12 noon to 2pm.

Charmaine describes herself as “I’m a carer to a husband with PPA dementia.”

Of course, Charmaine, her husband and me were in attendance as part of this impressive group of twelve delegates.

Charmaine also claims “Love my garden I post too many pics.” I disagree though on the latter half – Charmaine never posts too many pics of her garden. Here is a photograph I took of a very beautiful flower of hers.

This is in fact the pergola Charmaine’s husband built with Paul.

The meeting was held in one of the venue rooms at The Ostrich Hotel (“The Ostrich”), Station Road, Robertsbridge, East Sussex, T 32 5DJ.

The Ostrich is an outstanding B&B housed in a gorgeous Victorian location, with a spectacular tropical garden.

I had the pleasure of sampling a delicious supper with Charmaine and her husband.

Our couple of hours yesterday was an informal meeting for people affected by a diagnosis of PPA, their family and friends. We all thought the meeting was fantastic.

Jill showed a video for teaching purposes of what the language presentations of dementia, including PPA, are broadly like.

We all participated in an activity where we had to express the meaning of a sentence without using any of the words, e.g. “Part of my leg is hot and painful.” It was difficult!

The meeting was very enjoyable, but we were able to discuss many issues.

We discussed how the diagnosis of dementia could mean a contraction of your friends’ network, leading to loneliness.

We also discussed how greater education of what the dementias are would help to overcome stigma and discrimination against people living with dementia.

Overall, the feeling of the group was each person living with dementia must be treated with dignity as an unique individual with a significant past and present.

We also felt that the ‘one glove fits all’ approach of housing and accommodation doesn’t work, and forcing people with dementia into accommodation solutions they’re not happy with is bound to cause distress.

This can be a particular problem with younger patients with dementia, who wish to lead independent lives as long as possible, not wishing to be forced into an old people’s home.

If a younger person who receives a diagnosis of dementia it can be challenging to deal with your employer; the construct of ‘dementia friendly communities’, which is said to promote inclusivity, cannot adequately protect against unlawful discrimination if people are not aware of their legal rights and have inadequate access to justice.

PPA also has particular resonance in English policy as a noteworthy example of a younger onset dementia. A ‘younger onset dementia’ refers to a dementia which occurs before 65.

This cut-off is completely arbitrary, however (as arbitrary as the “retirement age”).

Younger onset dementia is a distinct group of people living with dementia, because the conditions which cause these dementias tend to be late presentations of “young” conditions or early presentations of “old” conditions.

In theory, the ‘younger onset dementia’ label is inaccurate, in that a dementia might start long before the symptomatic presentation of people with dementia. At one extreme, some people with the very rare genetic presentations of dementia are born with their dementias (or indeed have the genetic make-up in utero.)

It is therefore clear that we need a much greater sophistication in responding to the needs, beliefs, concerns and expectations of people with younger onset dementia.

The unique identity of people with younger onset dementia means that they have distinct research and service provision needs.

This is particularly true as some of the younger onset dementia can be accompanied by obvious movement and psychiatric symptoms, such as forms of prion disease (GSS and CJD) or Huntington’s disease.

A longstanding problem with the organisation of services is that mental illness problems have traditionally played ‘second fiddle’ to medical problems.

This is exacerbated by the drastic cuts in social care which have relentlessly continued in the last few years.

It is hoped that some of these problems in ‘parity of esteem’ might be mitigated against through ‘whole person care’, the expected policy from May 8th 2015 to integrate health and social care properly for the first time.

I had a very nice conversation with Fiona Chaâbane from the University Hospital Southampton NHS Foundation Trust.

Fiona’s rôle there is as a clinical nurse specialist in dementia, and as a clinical coordinator for Huntington’s disease and younger onset dementia.

I am hopeful that the ‘care coordinator’ rôle will be properly fleshed out in the next government, which will see a more substantial rôle for specialist and general nurses within networks comprising ‘dementia friendly communities’.

I feel that, in many of these conditions, cognitive or psychiatric features can be prominent early on.

My concern about the misdiagnosis of these dementias which do not have a strong component of a failure of memory is a very substantial one.

A misdiagnosis (e.g. of a dementia -> non-dementia such as anxiety or depression) can not only mean that person not obtaining the proper medical treatment, but can also mean that that person goes down a clinical pathway for which he or she is not appropriate. This can also impact on that person’s life and job in an utterly destructive way, particularly more so if before retirement age.

Thanks to Jill, Charmaine, her husband and the PPA support group for educating me properly about the dementias. It was particularly helpful to me too in confirming my concerns about research and service provision for the younger onset dementias in England, unfortunately. But at least we can now all begin to address them.

The references for chapter 1 of my book on prevention/risk factors in dementia

September 5, 2014 12:14 am / Leave a Comment

These are the references to Chapter 1 “Introduction”, mainly an overview of English dementia policy, prevention and risk factors, for my new book, “Living better with dementia: championing change for the future” (to be published early 2014).

Websites

“Call to action: the use of antipsychotics for people with dementia” http://www.institute.nhs.uk/qipp/calls_to_action/Dementia_and_antipsychotic_drugs.html

A letter to the Prime Minister charting progress on the Prime Minister’s Dementia Challenge (dated 7^th May 2014). https://s3-eu-west-1.amazonaws.com/media.dh.gov.uk/network/353/files/2014/05/10092-2902335-TSO-Dementia-Letter-to-PM-ACCESSIBLE.pdf

All Party Parliamentary Group (APPG) on dementia. (2012) Unlocking the diagnosis: the key to improving the lives of people with dementia http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=1457 (dated June)

Dementia 2013: The hidden voice of lonelineness http://www.alzheimers.org.uk/dementia2013

Dementia Roadmap. http://dementiaroadmap.info

Department of Health (2012) Prime Minister’s Dementia Challenge: delivering major improvements in dementia care and research by 2015 https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/215101/dh_133176.pdf

Making a Difference in Dementia: Nursing Vision and Strategy https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/147956/Making_a_Difference_in_Dementia_Nursing_Vision_and_Strategy.pdf

Memory Services National Accreditation Programme (Royal College of Psychiatrists) http://www.rcpsych.ac.uk/workinpsychiatry/qualityimprovement/qualityandaccreditation/memoryservices/memoryservicesaccreditation.aspx

NHS Confederation website/NHS Voices blog. (2014) A people-centred response to the 2015 Challenge is vital for the future of health and care, says Jeremy Taylor, http://www.nhsconfed.org/blog/2014/06/a-people-centred-response-to-the-2015-challenge-is-vital-for-the-future-of-health-and-care

PM Challenge on dementia (Alzheimer’s Research UK) http://www.alzheimersresearchuk.org/news-detail/10688/PM-Challenge-on-Dementia-a-year-of-progress-and-new-promise-for-research/ (dated 15 May 2013)

Public Health England and UK Health Prevention First (2014). The Blackfriars Consensus on promoting brain health: reducing risks for dementia in the population http://nhfshare.heartforum.org.uk/RMAssets/Reports/Blackfriars%20consensus%20%20_V18.pdf (“Blackfriars Consensus Statement”)

Rahman, S. (2014) “It’s time we talked about ‘dementia friendly communities’” Living well with dementia blog, http://livingwelldementia.org/2014/03/25/its-time-we-talked-about-dementia-friendly-communities/ (25^th March 2014).

Report on the prescribing of anti-psychotic drugs to people with dementia (author: Professor Banerjee) http://webarchive.nationalarchives.gov.uk/20130107105354/http:/www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_108303 (November 2009)

WHO (2013) [ed. Wilkinson, R., Marmot, M.] Social determinants of health: the solid facts. http://www.euro.who.int/__data/assets/pdf_file/0005/98438/e81384.pdf

Other references

Ahlskog, J.E., Geda, Y.E., Graff-Radford, N.R., Petersen, R.C. (2011) Physical exercise as a preventive or disease-modifying treatment of dementia and brain aging, Mayo Clin Proc, 86(9), pp. 876–84.

Albert, M.S., DeKosky, S.T., Dickson, D., Dubois, B., Feldman, H.H., Fox, N.C,., Gamst, A., Holtzman, D.M., Jagust, W.J., Petersen, R.C., Snyder, P.J., Carrillo, M.C., Thies, B., Phelps, C.H. (2011) The diagnosis of mild cognitive impairment due toAlzheimer’s disease: recommendations from the National Institute on Aging–Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease, Alzheimers Dement, 7, pp. 270–9.

Alzheimer’s Association Expert Advisory Workgroup on NAPA (2012) Workgroup on NAPA’s scientific agenda for a national initiative on Alzheimer’s disease, Alzheimer Dement, 8, pp. 357–361.

Bambra, C., Gibson, M., Sowden, A., Wright, K., Whitehead, M., Petticrew, M. (2010) Tackling the wider social determinants of health and health inequalities: evidence from systematic reviews, J Epidemiol Community Health, Apr, 64(4), pp. 284-91.

Barberger-Gateau, P., Raffaitin, C., Letenneur, L., Berr, C., Tzourio, C., Dartigues, J.F., Alpérovitch, A. (2007) Dietary patterns and risk of dementia: the Three-City cohort study. Neurology, Nov 13, 69(20), pp. 1921-30.

Bennett, D.A., Schneider, J.A., Tang, Y., Arnold, S.E., Wilson, R.S. (2006) The effect of social networks on the relation between Alzheimer’s disease pathology and level of cognitive function in old people: a longitudinal cohort study, Lancet Neurol, 5(5), pp. 406–12.

Beydoun, M.A., Beydoun, H.A., Wang, Y. (2008) Obesity and central obesity as risk factors for incident dementia and its subtypes: a systematic review and meta-analysis, Obes Rev, 9, pp. 204–218.

Biessels GJ. Capitalising on modifiable risk factors for Alzheimer’s disease. Lancet Neurol, Aug, 13(8), pp. 752-3.

Black, S.E., Patterson, C. Feightner, J. (2001) Preventing dementia, Canadian Journal of Neurology Science, 28 (Suppl 1), pp. S56–66.

Blackburn, D.J., Krishnan, K., Fox, L., Ballard, C., Burns, A., Ford, G.A., Mant, J., Passmore, P., Pocock, S., Reckless, J., Sprigg, N., Stewart, R., Wardlaw, J., Bath, P.M. (2013) Prevention of Decline in Cognition after Stroke Trial (PODCAST): a study protocol for a factorial randomised controlled trial of intensive versus guideline lowering of blood pressure and lipids, Trials, Nov 22, 14: 401.

Bond, J. (1992) The medicalization of dementia, Journal of Aging Studies, 6, 397–403.

Bowling, A. (2007) Aspirations for old age in the 21st century, what is successful aging? The International Journal of Aging and Human Development, 64, 263–297.

Boyle, P.A., Buchman, A.S., Wilson, R.S., Yu, L., Schneider, J.A., Bennett, D.A. (2012) Effect of purpose in life on the relation between Alzheimer disease pathologic changes on cognitive function in advanced age, Arch Gen Psychiatry, 69(5), pp. 499– 505.

Brodaty, H., Howarth, G., Mant, A., Kurle, S. (1994) General practice and dementia, A national survey of Australian GPs, Medical Journal of Australia, 160, 10–14.

Brooker, D., La Fontaine, J., Bray, J., Evans, S. (for the University of Worcester Association of Dementia Studies) (2013), Timely diagnosis of dementia: ALCOVE WP5 Task 1 and 2.

Brunet M. (2014) Targets for dementia diagnoses will lead to over-diagnosis, BMJ, 348:g2224.

Brunnström, H., Gustafson, L., Passant, U., Englund, E. (2009) Prevalence of dementia subtypes: a 30-year retrospective survey of neuropathological reports, Arch Gerontol Geriatr, Jul Aug, 49(1), pp. 146-9.

Buchman, A.S., Wilson, R.S., Bienias, J.L., Shah, R.C., Evans, D.A., Bennett, D.A. (2005) Change in body mass index and risk of incident Alzheimer disease, Neurology, 65, pp. 892–897.

Burns, A., Robert, P. (2009) The National Dementia strategy in England, BMJ, Mar 10, 338:b931.

Chang, M., Jonsson, P.V., Snaedal, J., Bjornsson, S., Saczynski, J.S., Aspelund, T., Eiriksdottir, G., Jonsdottir, M.K., Lopez, O.L., Harris, T.B., Gudnason, V., Launer, L.J. (2010) The effect of midlife physical activity on cognitive function among older adults: AGES—Reykjavik study, J Gerontol A Biol Sci Med Sci, 65(12), pp. 1369–74.

Cooper, C. (2013) G8 Dementia Summit: PM pledges to double funding for research by 2025, 11 December 2013, The Independent newspaper, http://www.independent.co.uk/life-style/health-and-families/health-news/g8-dementia-summit-pm-pledges-to-double-funding-for-research-by-2025-8996377.html

Crampton, J., Dean, J., Eley, R. (2012) Joseph Rowntree Foundation: Creating a dementia friendly York, http://www.jrf.org.uk/sites/files/jrf/dementia-communities-york-full.pdf.

Cunningham, E.L., Passmore, A.P. (2013) Drug development in dementia, Maturitas, 76(3), pp. 260-6.

Daviglus, M.L., Bell, C.C., Berrettini, W., Bowen, P.E., Connolly, E.S. Jr, Cox, N.J., Dunbar-Jacob, J.M., Granieri, E.C., Hunt, G., McGarry, K., Patel, D., Potosky, A.L., Sanders-Bush, E., Silberberg, D., Trevisan, M. (2010) National institutes of health state-of-the-science conference statement: preventing Alzheimer disease and cognitive decline, Annals of Internal Medicine, August 3, 153(3), pp. 176–81.

De Lepeliere, J., Wind, A., Iliffe, S., Moniz-Cook, E., Wilcock, J., Gonzalez, V., Derksen, E., Gianelli, M., Vernooij-Dassen, M. the Interdem Group. (2008). The primary care diagnosis of dementia in Europe: An analysis using multi-disciplinary, multi-national expert groups, Aging & Mental Health, 12(5), 568–576.

Desmond, D.W., Tatemichi, T.K., Paik, M., Stern, Y. (1993) Risk factors for cerebrovascular disease as correlates of cognitive function in a stroke free cohort, Archives of Neurology, 50, pp. 162–166.

Devi, G., Ottman, R., Tang, M., Marder, K., Stern, Y., Tycko, B., Mayeux, R. (1999) Influence of APOE genotype on familial aggregation of AD in an urban population, Neurology, 53: 789.

Devore, E.E., Grodstein, F., van Rooij, F.J., Hofman, A., Stampfer, M.J., Witteman, J.C., Breteler M.M. (2010) Dietary antioxidants and long-term risk of dementia, Arch Neurol, Jul, 67(7), pp. 819-25.

Downs, M., Turner, S., Iliffe, S., Bryans, M., Wilcock, J., Keady, J. (2003) Improving the response of primary care practitioners to people with dementia and their families: A randomised controlled trial of educational interventions. Final Report to the UK Alzheimer’s Society, Bradford: UK Alzheimer’s Society.

EClipSE Collaborative Members, Brayne, C., Ince, P.G., Keage, H.A., McKeith, I.G., Matthews, F.E., Polvikoski, T., Sulkava, R. (2010) Education, the brain and dementia: neuroprotection or compensation? Brain, Aug, 133(Pt 8), pp. 2210-6.

Gao, S., Hendrie, H. C., Hall, K. S, Hui, S. (1998) The relationships between age, sex, and the incidence of dementia and Alzheimer disease: a meta-analysis, Archives of General Psychiatry, 55, 809–815.

Gauthier, S., Leuzy, A., Racine, E., Rosa-Neto, P. (2013) Diagnosis and management of Alzheimer’s disease: past, present and future ethical issues, Prog Neurobiol, Nov. 110:102-13.

Gustafson, D.R., Backman, K., Waern, M., Ostling, S., Guo, X., Zandi, P., Mielke, M.M., Bengtsson, C., Skoog, I. (2009) Adiposity indicators and dementia over 32 years in Sweden. Neurology, 73, pp. 1559–1566.

Haase, H., Rink, L. (2009) Functional significance of zinc-related signaling pathways in immune cells, Annu Rev Nutr, 29, pp. 133–152.

Håkansson, K., Rovio, S., Helkala, E.L., Vilska, A.R., Winblad, B., Soininen, H., Nissinen, A., Mohammed, A.H., Kivipelto, M., .Soininen H., Nissinen, A., Mohammed, A.H., Kivipelto, M. Association between mid-life marital status and cognitive function in later life: population based cohort study, BMJ, 339:b2462.

Hansen, E.C., Hughes, C., Routley, G., Robinson, A.L. (2008) General practitioners’ experiences and understandings of diagnosing dementia: factors impacting on early diagnosis, Soc Sci Med, Dec, 67(11), pp. 1776-83.

Harvey, R.J., Rossor, M.N., Skelton-Robinson, M. (1998) Young onset dementia: epidemiology, clinical symptoms, family burden, support and outcome, London: Dementia Research Group.

Hofman, A., Ott, A., Breteler, M.M., Bots, M.L., Slooter, A.J., van Harskamp, F, van Duijn, C.N., Van Broeckhoven, C., Grobbee, D.E. (1997) Atherosclerosis, apolipoprotein E, and prevalence of dementia and Alzheimer’s disease in the Rotterdam Study, Lancet, 349, pp. 151–154

Holland, W. (2012) Competition or collaboration? A comparison of health services in the UK, Clinical Medicine, 10(5), pp. 431–3

Imtiaz, B., Tolppanen, A.M., Kivipelto, M., Soininen. H. (2014) Future directions in Alzheimer’s disease from risk factors to prevention, Biochem Pharmacol, Apr 15, 88(4), pp. 661-70.

Innes, A., Manthorpe, J. (2013) Developing theoretical understandings of dementia and their application to dementia care policy in the UK, Dementia (London), Nov, 12(6), pp. 682-96.

Ionicioiu, I., David, D., Szamosközi, S. (2014) A quantitative meta-analysis of the effectiveness of psychosocial interventions in dementia, Procedia – Social and Behavioral Sciences, 27, pp. 591 – 594.

Jenkins, C.R., Thien, F.C.K., Wheatley, J.R., Reddel, H.K. (2005) Traditional and patient-centred outcomes with three classes of asthma medication, European Respiratory Journal, 26(1), pp. 36-44.

Jiang, T., Yu, J.T., Tian, Y., Tan, L. (2013) Epidemiology and etiology of Alzheimer’s disease: from genetic to non-genetic factors, Curr Alzheimer Res, Oct, 10(8), pp. 852-67.

Johansson, L., Guo, X., Waern, M., Ostling, S., Gustafson, D., Bengtsson, C., Skoog, I. (2010) Midlife psychological stress and risk of dementia: a 35-year longitudinal population study. Brain, Aug, 133(Pt 8), pp. 2217-24.

Jorm, A.F., Jolley, D. (1998) The incidence of dementia: a meta-analysis, Neurology, 51, 728–33.

Kehne, J.H. (2007) The CRF1 receptor, a novel target for the treatment of depression, anxiety, and stress-related disorders, CNS Neurol Disord Drug Targets, 6, pp. 163–182.

Khachaturian, A.S., Meranus, D.H., Kukull, W.A., Khachaturian, Z.S. (2013) Big data, aging, and dementia: pathways for international harmonization on data sharing, Alzheimers Dement, 9 (5 Suppl), pp. S61-2.

Khachaturian, Z.S., Petersen, R.C., Snyder, P.J., Khachaturian, A.S., Aisen, P., de Leon, M., Greenberg, B.D., Kukull, W., Maruff, P., Sperling, R.A., Stern, Y., Touchon, J., Vellas, B., Andrieu, S., Weiner, M.W., Carrillo, M.C., Bain, LJ. (2011) Developing a global strategy to prevent Alzheimer’s disease: Leon Thal Symposium 2010, Alzheimers Dement, Mar, 7(2), pp. 127-32.

Kim, J.W., Lee, D.Y., Lee, B.C., Jung, M.H., Kim, H., Choi, Y.S., Choi, I.G. (2012) Alcohol and cognition in the elderly: a review, Psychiatry Investig, Mar, 9(1), pp. 8-16.

Kivipelto, M., Ngandu, T., Fratiglioni, L., Viitanen, M., Kareholt, I., Winblad, B., Helkala, E.L., Tuomilehto, J., Soininen, H., Nissinen, A. (2006) Obesity and vascular risk factors at midlife and the risk of dementia and Alzheimer disease, Arch Neurol, 62, pp. 1556–1560.

Kmietowicz, Z. (2012) Cameron launches challenge to end “national crisis” of poor dementia care, BMJ, 344, e2347.

Kmietowicz, Z. (2014) Recorded diagnosis of dementia in England increases by 62% since 2006, BMJ, 349, g4911.

Koch, T., Iliffe, S. (2011) Implementing the National Dementia Strategy in England: Evaluating innovative practices using a case study methodology, Dementia, 10(4) 487–498.

Kopelman, P.G., (2000) Obesity as a medical problem, Nature, 404, pp. 635–643.

Lautenschlager, N.T., Cupples, L.A., Rao, V.S., Auerbach, S.A., Becker, R., Burke, J., Chui, H., Duara, R., Foley, E.J., Glatt, S.L., Green, R.C., Jones, R., Karlinsky, H., Kukull, W.A., Kurz, A., Larson, E.B., Martelli, K., Sadovnick, A.D., Volicer, L., Waring, S.C., Growdon, J.H., Farrer, L.A. (1996) Risk of dementia among relatives of Alzheimer’s disease patients in the MIRAGE study: What is in store for the oldest old? Neurology, 46, pp. 641–50.

Leonard BE. (2006) HPA and immune axes in stress: involvement of the serotonergic system. Neuroimmunomodulation, 13, pp. 268–76.

Lieb, W., Beiser, A.S., Vasan, R.S., Tan, Z.S., Au, R., Harris, T.B., Roubenoff, R., Auerbach, S., De- Carli, C., Wolf, P.A., Seshadri, S. (2009) Association of plasma leptin levels with incident Alzheimer disease and MRI measures of brain aging, JAMA, 302, pp. 2565–2572.

Ligthart, S.A., Moll van Charante, E.P., van Gool, W.A., Richard, E. (2010) Treatment of cardio-vascular risk factors to prevent cognitive decline and dementia: a systematic revie, Vascular Health & Risk Management, (6), pp. 775–85.

Lincoln, P., Fenton, K., Alessi, C., Prince, M., Brayne, C., Wortmann, M., Patel, K., Deanfield, J., Mwatsama, M. (2014) The Blackfriars Consensus on brain health and dementia, Lancet, May 24, 383(9931), pp. 1805-6.

Lindsay, J., Hebert, R.Rockwood, K. (1997) The Canadian Study of Health and Aging – Risk Factors for Vascular Dementia, Stroke, 28, 526–530.

Lupton, D. (1999) Risk. London: Routledge.

Lyman, K. A. (1989) Bringing the social back in: a critique of the bio-medicalisation of dementia, Gerontologist, 29, pp. 597–604.

Masi, C.M., Chen, H.Y., Hawkley, L.C., Cacioppo, J.T. (2011) A meta-analysis of interventions to reduce loneliness, Pers Soc Psychol Rev, Aug, pp. 15(3):219-66.

McCullagh, C.D., Craig, D., Mollroy, S.P., Passmore, A.P. (2001) Risk factors for dementia, Advances in Psychiatric Treatment, 7, pp. 24-31.

McKhann, G.M, Knopman, D.S., Chertkow, H., Hyman, B.T., Jack, C.R. Jr, Kawas, C.H., Klunk, W.E., Koroshetz, W.J., Manly, J.J., Mayeux, R., Mohs, R.C., Morris, J.C., Rossor, M.N., Scheltens, P., Carrillo, M.C., Thies, B., Weintraub, S., Phelps, C.H. (2011) The diagnosis of dementia due to Alzheimer’s disease: recommendations from the National Institute on Aging–Alzheimer’s Association workgroups on diagnostic guidelines for Alzheimer’s disease, Alzheimers Dement, 7, pp. 263–9.

Milne, A. (2010) Dementia screening and early diagnosis: The case for and against, Health, Risk & Society, 12(1), pp. 65–76.

Mizutani, K., Nishimura, K., Ichihara, A., Ishigooka, J. (2014) Dissociative disorder due to Graves’ hyperthyroidism: a case report, Gen Hosp Psychiatry, Mar 19. pii: S0163 8343(14)00073-5.

Monastero, R., Mangialasche, F., Camarda, C., Ercolani, S., Camarda, R. (2009) A systematic review of neuropsychiatric symptoms in mild cognitive impairment, J Alzheimers Dis, 18(1), pp. 11–30.

Moroney, J.T., Tang, M.X., Berglund, L., Small, S., Merchant, C., Bell, K., Stern, Y., Mayeux, R. (1999) Low density lipoprotein cholesterol and the risk of dementia with stroke, Journal of the American Medical Association, 282, pp. 254–260.

Morris, J.C. (2005) Early-stage and preclinical Alzheimer disease, Alzheimer Dis Assoc Disord, 19, pp. 163–5.

Morris, M.C., Evans, D.A., Bienias, J.L., Tangney, C.C., Bennett, D.A, Aggarwal, N., Schneider, J., Wilson, R.S. (2003) Dietary fats and the risk of incident Alzheimer disease, Arch Neurol, 60(2), pp. 194-200. [Erratum in: Arch Neurol. 2003 Aug;60(8):1072.]

National Audit Office (2007) Improving services and support for people with dementia, London: The Stationary Office.

Ngandu, T., Helkala, E.L., Soininen, H., Winblad, B., Tuomilehto, J., Nissinen, A., Kivipelto, M. (2007) Alcohol drinking and cognitive functions: findings from the Cardiovascular Risk Factors Aging and Dementia (CAIDE) Study, Dement Geriatr Cogn Disord, 23(3), pp. 140-9.

Ngandu, T., von Strauss, E., Helkala, E.L., Winblad, B., Nissinen, A., Tuomilehto, J., Soininen, H., Kivipelto, M. (2007) Education and dementia: what lies behind the association? Neurology, Oct 2, 69(14), pp. 1442-50.

Norton, S., Matthews, F.E., Barnes, D.E., Yaffe, K., Brayne, C. (2014) Potential for primary prevention of Alzheimer’s disease: an analysis of population-based data, Lancet Neurol, Aug, 13(8), pp. 788-94.

Panza, F., Frisardi, V., Seripa, D., Logroscino, G., Santamato, A., Imbimbo, B.P., Scafato, E., Pilotto, A., Solfrizzi, V. (2012) Alcohol consumption in mild cognitive impairment and dementia: harmful or neuroprotective? Int J Geriatr Psychiatry, Dec, 27(12):1218-38.

Peters, R. (2012) Blood pressure, smoking and alcohol use, association with vascular dementia. Exp Gerontol, Nov, 47(11), pp. 865-72.

Piazza-Gardner, A.K., Gaffud, T.J., Barry, A.E. (2013) The impact of alcohol on Alzheimer’s disease: a systematic review, Aging Ment Health, 17(2), pp. 133–46.

Prasad, A.S. (2009) Impact of the discovery of human zinc deficiency on health, J Am Coll Nutr, 28, pp. 257–265.

Prasad, A.S. (2003) Zinc deficiency, BMJ, 326, pp. 409–410.

Ratnavalli E, Brayne C, Dawson K, et al. (2002) The prevalence of frontotemporal dementia. Neurology, 58:1615–21.

Redman, R.W., Lynn, M.R. (2004) Advancing patient-centred care through knowledge development, Canadian Journal of Nursing Research, 36(3), pp. 116-129.

Rissman, R.A., Staup, M.A., Lee, A.R., Justice, N.J., Rice, K.C., Vale, W., Sawchenko, P.E. Corticotropin releasing factor receptor-dependent effects of repeated stress on tau phosphorylation, solubility, and aggregation, Proc Natl Acad Sci USA, Apr 17, pp. 109(16):6277-82.

Ritchie, C.W., Ritchie, K. (2012) The PREVENT study: a prospective cohort study to identify mid-life biomarkers of late-onset Alzheimer’s disease, BMJ Open, Nov 19, pp. 2(6).

Rusanen, M., Rovio, S., Ngandu, T., Nissinen, A., Tuomilehto, J., Soininen, H., Kivipelto, M. (2010) Midlife smoking, apolipoprotein E and risk of dementia and Alzheimer’s disease: a population-based cardiovascular risk factors, aging and dementia study. Dement Geriatr Cogn Disord, 30(3), pp. 277-84.

Saleem, A., Sophia, R. (2014) Voltage-gated potassium channel antibody-associated limbic encephalitis, Age Ageing, Jul, 43(4), pp. 583-5.

Sapolsky, R.M. (1996) Why stress is bad for your brain, Science, 273, pp. 749–50.

Scarmeas, N., Stern, Y., Tang, M.X., Mayeux, R., Luchsinger, J.A. (2006) Mediterranean diet and risk for Alzheimer’s disease, Ann Neurol, Jun, 59(6), pp. 912-21.

Schliebs, R., Arendt, T. (2011) The cholinergic system in aging and neuronal degeneration, Behav Brain Res, Aug 10, 221(2), pp. 555-63.

Skoog, I., Kalaria, R.N., Breteler, M.M. (1999) Vascular factors and Alzheimer disease, Alzheimer Dis Assoc Disord, 13(suppl 3), pp. S106–S114

ofi, F., Valecchi, D., Bacci D., Abbate, R., Gensini, G.F., Casini, A., Macchi, C. (2011) Physical activity and risk of cognitive decline: a meta-analysis of prospective studies, J Intern Med, 269(1), pp. 107–17.

Sperling, R.A., Rentz, D.M., Johnson, K.A., Karlawish, J., Donohue, M., Salmon, D.P., Aisen, P. (2014) The A4 study: stopping AD before symptoms begin? Sci Transl Med, Mar 19, 6(228), pp. 228fs13.

Stern, Y., Gurland, B., Tatemichi, T.K., Tang, M.X., Wilder, D., Mayeux, R. (1994) Influence of education and occupation on the incidence of Alzheimer’s disease, JAMA, 271(13), pp. 1004–10.

Szewczyk, B. (2013) Zinc homeostasis and neurodegenerative disorders. Front Aging Neurosci, Jul 19, 5:33.

Tischler V, D’Silva K, Cheetham A, Goring M, Calton T. Involving patients in research: the challenge of patient-centredness, Int J Soc Psychiatry, 2010 Nov, 56(6), pp. 623-33

Tyas, S.L., White, L.R., Petrovitch, H., Webster Ross, G., Foley, D.J., Heimovitz, H.K., Launer, L.J. (2003) Mid-life smoking and late-life dementia: the Honolulu-Asia aging study, Neurobiol Aging, 24(4), pp. 589–96.

van der Linde, R.M., Stephan, B.C., Matthews, F.E., Brayne, C., Savva, G.M. (2013) Medical Research Council Cognitive Function and Ageing Study. The presence of behavioural and psychological symptoms and progression to dementia in the cognitively impaired older population, Int J Geriatr Psychiatry, Jul;28(7):700-9.

van Duijn, C.M., Hendriks, L., Cruts, M., Hardy, J.A., Hofman, A. (1991) Amyloid precursor protein gene mutation in early-onset Alzheimer’s disease, Lancet, 337(8747): 978.

Vellas, B., Gillette-Guyonnet, S., Andrieu, S. (2008) Memory health clinics-a first step to prevention, Alzheimers Dement, Jan, 4(1 Suppl 1):S144-9.

van El, C.G., Cornel, M.C., Borry, P., Hastings, R.J., Fellmann, F., Hodgson, S.V., Howard, H.C., Cambon-Thomsen, A., Knoppers, B.M., Meijers-Heijboer, H., Scheffer, H., Tranebjaerg, L., Dondorp, W., de Wert, GM, ESHG Public and Professional Policy Committee. (2013) Whole-genome sequencing in health care: recommendations of the European Society of Human Genetics, Eur J Hum Genet, Jun;21(6):580-4.

Verity, C.M., Nicoll, A., Will, R.G., Devereux, G., Stellitano, L. (2000) Variant Creutzfeldt-Jakob disease in UK children: a national surveillance study, Lancet, Oct 7, 356(9237), pp. 1224-7.

Victor, M., Adams, R.D., Collins, G.H. (1971) The Wernicke–Korsakoff syndrome. F.A. Davis.

Vileland, T. (2002) Managing chronic disease: evidence-based medicine or patient-centred medicine? Health Care Analysis, 10(3), pp. 289-98.

Wang, H.X., Gustafson, D.R., Kivipelto, M., Pedersen, N.L., Skoog, I., Windblad, B., Fratiglioni, L. (2012) Education halves the risk of dementia due to apolipoprotein ?4 allele: a collaborative study from the Swedish brain power initiative, Neurobiol Aging, 33(5). 1007.e1-7.

Warren, M.W., Hynan, L.S., Weiner, M.F. (2012) Lipids and adipokines as risk factors for Alzheimer’s disease, J Alzheimers Dis, 29, pp. 151–157.

WHO (Revised February 2012) Variant Creutzfeldt-Jakob disease: factsheet no 180, available at http://www.who.int/mediacentre/factsheets/fs180/en/ [accessed 12 June 2014].

Wilson, R.S., Scherr, P.A., Schneider, J.A., Tang, Y., Bennett, D.A. (2007) Relation of cognitive activity to risk of developing Alzheimer disease, Neurology, 69(20), pp. 1911–20.

Wise J. (2014) £90m package to improve dementia care is announced in England, BMJ, 348, g1879.

Zecca, L., Youdim, M.B., Riederer, P., Connor, J.R., Crichton, R.R. (2004) Iron, brain ageing and neurodegenerative disorders, Nat Rev Neurosci, 5, pp. 863–873.

Source of the graphic in the top left corner of this page is here.

The Barker Commission is helpful, but regulatory capture is an obstacle for dementia

September 4, 2014 7:46 am / Leave a Comment

I welcome the hard work from the Barker Commission at the King’s Fund taking yet another look at how the health and social care systems can be brought together.

I agree that the continuation of this would be to reinforce a somewhat historical relic, when the evidence in my own field dementia is that the silos of care are indeed unhelpful in our direction of travel.

Our direction of travel in dementia is to move away from someone somewhere prescribing an ‘anti-dementia drug’ such as a cholinesterase inhibitor which has a limited time window for its effect on symptoms in dementia (and no robust evidence for slowing disease progression).

And the direction of travel is to move towards to thinking how to improve the wellbeing of a person with dementia. A person with dementia only becomes a patient when he or she is ill, and the wish of the services I feel will be to try to look after a person long before he or she has a medical crisis.

Too often the debate about the fusion of health and social care system has been entrenched in the all important debate about merging a universal and means-tested system. I do not wish to deny that.

But on the other hand, it would, I am sure, for a dream to be realised that the National Health Service could look after the health of a citizen in a national way, rather than for the needs of a person to be ‘dealt with’ in a piecemeal, fragmented, way, where profit before people may be an overriding principle.

For me, personhood in medicine and social care is about understanding that person, the person’s past, present, and future, and in relation to the environment and community.

This means that there will need to be some retraining of the workforce and reconfiguration of the health and social care systems, but there should be intelligent kindness to a beleaguered workforce part of which has just had to cope with a £2 bn reorganisation through the Health and Social Care Act (2012).

Too often the focus for a person who has received a diagnosis of dementia is on the correct pill to prescribe. But clearly this is not good enough.

I am told all the time that what people want is some idea about the nature of their condition, how it might progress, what adaptations to their home might be necessary, what benefits might be available, what legal advice they can get ahead of the crucial time when mental capacity is lost, how the community will help if at all (for example banks), or how the environment can help (good signage if people are prone to navigation problems).

I do not wish to take the wind out of the sails of the important, valuable work by my medical colleagues in thinking about what factors might prevent dementia (e.g. intense social networks, exercise, certain foods), nor the search for medications which can interfere with the progressive biology of the conditions.

But people living in the here and now wish a practical, joined up solution in health and social care system, where information is freely shared in a necessary and proportionate way, mitigating for risks of sharing of personal information.

There are a number of obstacles to making this happen, but there is no doubt for me that ‘parity of esteem’ is a crucial factor. We have got to get out of the mentality of thinking of mental health and social care as unimportant compared to medical care.

This is a longstanding problem in policy, and there has been important progress in this. However, if we are to go down the route of making each pound count in the current NHS spend, in the avoidance of extra taxes or copayments, we should be bold enough to think of whether an adapted phone with big buttons and redials is more cost-effective than a pill for improving the quality of life of a person with early Alzheimer’s disease.

In the early stages of Alzheimer’s disease, the most common type of dementia worldwide, people living with dementia typically might experience problems particularly in short term memory and learning.

I think the regulatory capture of bodies such as NICE, and medical regulators, will help to perpetuate the medical approach to dementia.

But if we had unified regulators, including one which could directly compare the cost effectiveness of a pill with that, say, of advocacy advice, with a view to improving the outcome of a quality of life of that person, rather than the effect on two points on a memory screening instrument, this would be progress.

This will require political nerve, and leadership from people in the field. I hope all concerned are up for the challenge. But the Barker Commission is an useful start, I think.

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