The ‘faces of dementia’

I am not actively antagonistic towards the medical ‘profession’, but I think I should be allowed to offer some healthy criticism of their activities as regards dementia. Their activities can tend to belittle people into a portfolio of clinical meetings and investigation results, charting decline in people with dementia, and not offering anything much in the way of life planning, care or support. The lack of drive for clinical nursing specialists, say compared to Marie Carie and Macmillan, is a testament to a profound impotence in clinical leadership in some places.


And yet UK dementia research is flourishing, a true envy of the world, while junior doctors sadly are thinking about strike action. The two cultures are fascinating, but, on the international scene, there are some remarkable people with dementia doing remarkable things. I do somewhat resent how little I was ‘taught’ about living with dementia at medical school, but I think ultimately I was to blame. The NHS ‘teaches’ you to treat clinical care in hospitals as processes which need to be ‘productive’ and ‘efficient’. I would encourage any junior in training to read up about living with dementia from any possible diverse source. For example, reading this piece on living with posterior cortical atrophy by Valerie Blumenthal will teach you much more about humanity and the condition, than many decades at medical school might.




My friend Helga Rohra was elected to the position of Vice Chair of Dementia Alliance International. Helga was already Chair of the European Working Group of Persons with Dementia, a group which has had success in mapping the concerns of people with dementia and carers onto European policy. Helga’s book is currently being translated from the German to English (we hope); and Helga’s career as a translator who spoke five languages is not to be dismissed lightly.


Every day, Agnes Houston MBE is active in campaigning about dementia. A proud member of the Scottish Dementia Working Group, Agnes’ own particular interests are sensory issues in dementia.




I have met some extraordinary people in the last two years, since my interest in dementia became less from the perspective of my medical training and more to one of essential humanity.


The late Tony Benn used to joke about how the term ‘activist’ tended to be used pejoratively as an insult. For example, a vicar might be a ‘religious activist’, or an author might be a ‘literary activist’. I still hesitate when I hear the term ‘dementia activist’, as I feel that it puts an unnecessarily militant overtone on extraordinary people doing extraordinary things.


Take for example Peter Mittler, himself an Emeritus Professor for the University of Manchester. Peter has in fact got an incredibly distinguished career behind him in inclusivity. Hilary Doxford was the first ever delegate living with dementia onto the World Dementia Council, a post which Hilary has executed brilliantly.




I will be in Birmingham NEC for the evening of Friday, to be there with my friend Chris Roberts, who has been nominated for the award of most exceptional person living with dementia in the National Dementia Care Awards 2015.




Also nominated is Ken Howard, who like Chris Roberts, came to our joint get-together hosted by me and Kate Swaffer in Arlington Centre, Camden. Ken, good luck!




I don’t like the term ‘stages of dementia’ for the very reasons which our friend Beth Britton describes here. Indeed, I remember Helga specifically railing against this in her plenary speech at the Alzheimer’s Disease International conference this year in Perth, Western Australia, in April 2015.


Last night (Aussie time), this morning (London), was Kate Swaffer, another extraordinary person doing another extraordinary thing. Kate is Chair of Dementia Alliance International, and was nominated for Australian of the Year (for Southern Australia). Jacinta’s also in this photo!




Kate Swaffer maintains a profound interest and expertise in cuisine; Kate even ran a restaurant. There’s very little Kate hasn’t excelled at previously, including poetry and nursing. Kate even achieved a distinction in her Masters in Dementia Care from the University of Wollongong recently.


Putting the ‘me’ back in dementia is no small desire; seeing the person beyond the dementia is essential, and I can’t emphasise this enough. I was thinking this morning of what I’d say for the new Nottingham initiative ‘Dementia Day to Day’, and I struck on the idea that what links us all, whether we happen to be living with dementia, carers (including friends and family), people in research, professionals (allied or otherwise), all practitioners including social care practitioners, and so on, is a strong sense of ‘bonding’ and community. I reckon I can spot quite easily people who aren’t ‘team players’. Unfortunately, there’s a minority who are so focused on the bottom line or the next target that such individuals have lost the plot of what living beyond dementia is all about. I think when you as an individual worry too much about your empire or the next grant to commission, more than the actual needs of people with dementia, met and unmet, or worry about your own standing in your industry, you should really begin to worry.


The diverse faces of dementia deserve much better.

My survey on rights and dementia

This survey, which I am doing, is on rights and dementia.

This might mean rights you have a person living beyond a diagnosis of dementia (Kate Swaffer’s term) or as a carer.

This survey is not intended to make you feel bad in case you’ve never heard of these legal instruments or rights – simply answer ‘don’t know’. There’s no shame in that.

My view is that rights-based campaigning, which is adopted by the Scottish jurisdiction and increasingly by the English jurisdiction, is pretty rubbish unless people have heard of the rights which protect them.

The instruments referred to in this survey are rights includes ones which are automatically available to us, on the basis of being international instruments.

Thank you for your participation. It only takes a few minutes.

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.


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.








If life is like a box of chocolates, then surely dementia care is like a cake?

If life is like a box of chocolates, then surely dementia care is like a cake?

Karen Dening (@KDening), Director of Admiral Nursing at Dementia UK, mooted this idea at the beginning of the UK Dementia Congress in Telford last week.


The strands in national policy for dementia care include a timely diagnosis, where much of the emphasis in policy and resources has been placed.

But it is pretty uncertain how many of the diagnoses purporting to be dementia in fact turn out to be the minimal cognitive impairment (cognitive symptoms, but not dementia). Also, it is unclear how many diagnoses of young onset dementia, where memory is very often not the first symptom, are being missed.

The policy also includes ‘dementia friendly communities’, better conceptualised as ‘dementia accessible’ or ‘dementia inclusive’ communities. The ‘friends’ programme in the England was modelled on the friends initiative in Japan, but here, and in Europe, especially much more effort has been to link the policy with human rights and equality.

Dementia is a disability, as evidenced by the guidance to the Equality Act (2010). So the approach of the United Nations Convention on Rights for People With Disabilities is very relevant here. As such, dementia is in a similar place to where activism on racism a few decades has been.

It would be wrong to think that ‘dementia friendly communities’, however defined, are a ‘quick fix’. There is a temptation to think that, coupled with ‘greater awareness’, the essence, unlike Vanilla Essence, is ‘cost neutral’.

As Prof John Hardy expressed on Newsnight last night, UK research into dementia is of a very high quality, as it has the integrity of the NHS to draw from on. Nonetheless it’s still the case that research in the dementias in the UK dwarfs the budget of the US, and the relative monies invested in research in the UK in the dementias is a fraction of that for cancer or HIV.

Clearly with social care on its knees, and likely to remain so in the UK’s forthcoming comprehensive spending round, not even a budgetary magic trick of transferring funding for dementia from social care to public health can save the care sector.

In England, pressures on the care sector include demands necessary safe staffing, at above the minimum wage have demonstrated how fragile the business model of residential setting really is. The interview with Guy Hands, and recent predicament of Four Seasons, is testimony to that.

It might seem that the attractive, cheap, option might be to produce a new model army of a nation of dementia advisors or dementia support workers, but there is an inevitable danger of stockpiling the workforce with an abundance of relatively less skilled signposts to increasingly disappearing services.

Dementia is also not where cancer is, in the use of advance care planning advancing continuity of care, or a network of national clinical nursing specialists. Whereas Marie Cure and Macmillan have been spectacularly successful in clinical care of patients with cancer, the record of the dementia sector is abysmal.

On the other hand, Admiral Nurses, clinical specialist nurses from Dementia UK, are in a great place to offer care and support to people living with dementia and their carers. How wonderful it would be if the 850,000 people with dementia could rely on them as a first port of call to discuss with them the timely diagnosis, information about the condition and local services, medication reviews, continuity of care, advanced care planning, legal (e.g. power of attorney) and safeguarding issues, end of life, and even, later, bereavement issues. Admiral Nurses are as far away from a niche service, in representing unmet and met service needs, as you can get.




It is abundantly clear that the so-called masterchefs of the current cake have in fact made a pig’s ear of dementia care policy, promoting dementia as a brand far too much, ahead of the overall needs of the people who are trying to live beyond a diagnosis of dementia and carers.

This has been down to too much of certain ingredients, and not enough of others. The proof of the pudding, as ever, is in the eating.

The spectre of Bond, fusiform gyrus and ‘are faces special?’

Last night, I went to see “Spectre”, the new Bond movie, in the O2 centre on Finchley Road.

A review of it, in the New Yorker, is here.

Being careful not to do any ‘spoilers’, towards the end of a rather long but excellent film, there is a futuristic scene involving James Bond. The Bond baddie of this movie mentions ‘the fusiform gyrus’, which is indeed an interesting part of the brain.

Fans of cognitive neurology will of course recognise this part of the brain at once.

The temporal lobe, part of the brain near the ear, has a number of different functions including learning and memory. That’s why when, early on in the disease process of Alzheimer’s disease affecting the ‘hippocampus’ in the temporal lobe, persons often remark losing memory of whole recent events. Elsewhere in the temporal lobe is a distinct perceptual function – in particular for the higher order complex processing of objects. It’s been known for over thirty years now that there are neurones in the ‘superior temporal sulcus’ which appear particularly sensitive to faces.

One of the classic reports in the literature is here.

The superior temporal sulcus and fusiform gyrus are both parts of the human brain which are intimately connected in both structure and function. The question for future research will be to find out why and how.

The idea that a part of the brain has a particular function has been around for some time ago.

Phrenology (from Greek φρήν (phrēn), meaning “mind”, and λόγος (logos), meaning “knowledge”) is a pseudoscience which was primarily focused on measurements of the human skull, based on the concept that the brain is the organ of the mind, and that certain brain areas have localised, specific functions or modules (source).
All this came to a fore in a classic from the MIT Press from Jerry Fodor, “The Modularity of Mind” (1983).
It is of course a hugely powerful issue whether one part of the brain holds the key to a particular function. But it’s been latterly been realised that localised parts of the brain ‘doing function’ identified in a simplistic way, say the Wernicke area for language comprehension, may in fact be a rather complicated discrete distributed neural network.
An example of a recent paper from the cognitive neurology literature is here.
But are faces special?
This was indeed a hot enough question for the great Oliver Sacks to devote a piece of work to, entitled “The man who mistook his wife for a hat”.


That face perception in humans was truly recognised in Bodamer’s 1947 classic paper on prosopagnosia.

Problems in perception of face identity and facial expression can occur in isolation. Though there are methodological concerns, it could be that certain persons living with Huntington’s disease could have a real problem, for example, with the perception of disgust.

Dementia, the umbrella term usually given for chronic progressive diseases of brain, can affect any function – it’s not just about memory. Therefore unsurprisingly persons with dementia might theoretically have problems with face perception.

One intriguing example is the “Capgras delusion“. The Capgras delusion (or Capgras syndrome) describes where a person holds a delusion that a friend, spouse, parent, or other close family member (or pet) has been replaced by an identical-looking impostor.

There are various approaches which can be tried here perhaps.

One which is interesting is “entering the reality”, as described here.


This is part of the ethical debate about ‘therapeutic lying’ which was introduced last week in an excellent plenary session by Toby Williamson at the UK Dementia Congress 2015 in Telford.

Of course, entering the reality of James Bond is an altogether different matter.

My impressions of the Dementia Congress conference 2015



First thing’s first, I loved the company up there. I met people properly up there, including Prof Dawn Brooker, Prof Murna Downs, Sally Knocker, Damian Murphy and Philly Hare, whom I hadn’t really met bet before. I ‘get’ Dawn’s work, Murna has a terrific sense of humour, Sally’s completely lovely, Damian’s on the ball with his work and Philly I think has a heart of gold. I can see now why Philly and Wendy (Mitchell) get on so well. I was thrilled to see the leaders of the Lewy Body Society confidently presenting their society – lovely ambassador and work I’m very interested in (having received so many complimentary reports on Prof Ian McKeith’s clinical approach.)

I suppose I did have different expectations of the event. I expected it to be ‘hard sell’ which it wasn’t. I expected the material to be light academically (I don’t mean this in an academic snobby way) – but it wasn’t. There was a real family atmosphere. Some members of the family perhaps were not that thrilled to see me (but didn’t say so), but on the whole I had a very happy time. Some of the family I’ve been around half way round the world with – like Chris Roberts and Jayne Goodrick to Australia.

It gave me great pleasure, from a completely egotistical perspective, to direct people to my book ‘Living better with dementia: good practice and innovation for the future’ to the JKP Press stand.  It happened also to be convenient shorthand whenever somebody asked for my thoughts on an issue.

I had become fed up with the question of ‘what do you do?’ I am bound to feel fed up with this in the sense that I genuinely feel I am not ‘doing’ very much; but what I ‘do’ I enjoy so much, it doesn’t feel as if I’m ‘doing it’.  But this time I was helped along by my name badge saying I worked for ‘Ground Floor Flat’. I said jokingly on Twitter I was hosting at Congress my launch party for  a brand new innovative, person-centred care for people living alone with dementia in relation to ‘Ground Floor Flat’. 11 people retweeted it. I withdrew the tweet. [Note to editors: both my regulators despite offences of dishonesty.]

Suzy Webster and Sarah Reed laughed so much about this. I wish Suzy had been there longer, and I wished I’d been there for Sarah’s session but I think it clashed with Andrea Sutcliffe’s session. I had a coughing fit during my session, which was probably divine retribution for me asking whether dementia policy should be governed by the free market.

I was a bit disappointed with the Ministerial video. It didn’t say much I didn’t already know. I perfectly understand her not being there because of a three-line whip, but wish I had come out of that video of hers knowing something a bit more about this current government’s commitment to dementia policy. I think Jeremy Hughes answered questions very skilfully – including my one asked of a panel on personal budgets.

I have very few criticisms of this event. One session overran, was appallingly timed, not much focus on actual empirical work (very anecdotal), and then did not allow time for questions. But on the whole the sessions were academically rigorous, thought provoking and presented to a very high standard. As I tweeted at the time, the session chaired by Zoe Harris on coordination of care and personalised approaches, featuring the titans Ian McCreath and Helen Sanderson, was the best conference session I’ve ever been to (and I’ve been to very many).

The need for clinical specialist nurses was very very loud in this conference, and so it should be given the overwhelming thumping clinical evidence for their importance in outcomes especially in coordination of NHS and social care. It was totally lovely to chat with Karen Dening, Rachel Thompson, Amy Pepper and Lucy Frost.

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Steve Milton inspired me massively, in doing huge amount of work and refusing to take credit for any of it. Toby Williamson continues to inspire me as being very understated but massively over delivering. I chatted with Toby personally about a common interest in rights and disability (the brilliant Mental Health Foundation report on this under Toby was published earlier this year.) I wish I had spent more time with Peter Mittler at this conference.  But I will catch up with Peter for definite. Peter’s put a huge amount into promoting rights-based advocacy approaches; he himself had a massive rôle in the development of this policy in the inclusion sphere and the UN Convention of Rights of People with Disabilities.

People living with dementia, like Peter, are the stars of the show. I loved seeing my old friends Ken Howard, Agnes Houston, Joy Watson, Tommy Dunne, and Keith Oliver. I see Keith as a very wise man, which he is. I have found Peter Ashley’s comments incredibly useful in the past – I share totally Prof Dawn Brooker’s regret at Peter not having been able to attend conference this year.

The plenary sessions by Prof R0se-Marie Drões and Prof Martin Prince on integrated person-centred care and global perspectives were superb.

My favourite session in the end was probably Lucy Whitman’s one based around her new book ‘People with dementia speak out’. I chatted with two friends of mine I adore, Larry Gardiner and Dr Jennifer Bute. Issues came up such as the impact of the diagnosis, and how it was more important to meet the needs of the person living rather than to get knotted into a diagnostic obsession. I loved speaking with Lucy privately – a terrific force for good.

David Sheard’s talk in the main hall of conference was awesome. It unfortunately produced an Amazon order of significant weight, but was entertaining, informative and educational in equal measure, in producing a thought provoking discussion of personhood in the light of recent trends in dementia care.

I am glad that this conference gave proper conference to the importance of carers in English dementia – TIDE carers were superbly represented by Louise Langham and Jean Tottie. The carers’ influence was also felt from a distance from Rachel Niblock, tweeting furiously, and in complete solidarity with Neil Mapes’ superb presentation on a response for Age UK to provide inclusivity.

For next year, I’d really like a unifying theme for the conference, which this year’s suffered from not having one. I also felt that the conference fizzled out, albeit with outstanding parallel sessions, and maybe there should have been a common plenary for all of us (particularly to stop people getting early trains back home.)

I thought the Hawker bunch were lovely – I spoke with Mark, the editor of Journal of Dementia Care, and Richard, the Editor in Chief, who was all round brilliant. Much missed was Tim Lloyd-Yeates. I remember when Tim phoned me up to tell me of his medical diagnosis, and we chatted about how anything could happen to anyone at any time. Thanks to the organisers of this conference for a brilliant evening event, including a tribute to Tim, showcasing art. Massive thanks to Sue Benson who clearly was a glue for much of this conference of two days.

I did miss Kate Swaffer though. Kate won best leader award at a different conference. Rightly so, as my chapter on leadership in dementia in my book had her in mind.



Book review: “People with dementia speak out” by Lucy Whitman

Published by Jessica Kingsley publishers, 2015.

ISBN-10: 1849052700
ISBN-13: 978-1849052702


It’s a necessity of civilised citizenship that voices are listened to. A particular issue with the narrative on dementia is that it has sometimes been unclear whose story we are listening to. It’s easy to ignore some stories if they don’t fit a big picture. It’s particularly easy to ignore those stories if you don’t actively seek them out.

Somewhat paradoxically I am also reading Koch on consciousness. This thesis is somewhat a reaction against the simply reductionist approach. It is inevitable that, in seeking out disease modifying drugs for dementia or possibly cures, the approach is somewhat blunt – but who’s to say it will not be effective?

I had to read Lucy Whitman’s book several times to understand it properly. Like a psychological thriller, somewhat, most of the power in the message is left entirely up to the reader to work out for himself. It’s a relic of Tom Kitwood’s work that no two people with dementia are the same – and this is abundantly clear from reading the diverse accounts of people living with dementia in this book. And yet important themes emerge – about how the diagnosis is unnecessarily bungled, often, by the medical profession, and how individuals come to terms with the diagnosis.

What is also revealing is the extent to which people have friends and family to rely on at this demanding time. But what is especially exciting, often, is that how people beyond the diagnosis of dementia (to use Kate Swaffer’s phrase) find a meaning in their lives. If you believe it’s not how you fall, it’s how you get up, it’s particularly educational to see how people have got on with their lives in the face of relatively little in an offering from the medical profession.

The book is very effective. The accounts sound authentic, and in no way homogenised by Whitman. The accounts are diverse, candid and sobering. It is a very well written book, which is a pleasure to read. I think the windows on various people’s lives would be wonderful background reading too for any professional in training.

No one account of dementia is any more relevant than the other, but this is not to say that all should have prizes. Every single person in this book has faced unique challenges and concerns. Lucy Whitman herself in the introduction confronts whether how representative the ‘sample’ is. Quite correctly, no one person is particularly representative, but I think it would be completely unfair, say, to say that there is no account from a particular diversity perspective.

But is this book entirely self-selecting? My issue with this criticism is that everything can be viewed through the self-selecting prism. What is it that makes someone write a book in the first place? Producing this book must have been a real ‘labour of love’ for Lucy Whitman, and her passion and enthusiasm seep through every pore of this book. One may in passing wonder the people with dementia are on the young side, some perhaps ‘professional activists’. But this would be entirely to miss the point – for example, as said before, is a vicar a ‘religious activist’ or an author ‘a literary activist’? One can certainly not ‘blame’ a person with dementia having a clear articulation of where he or she stands with the diagnosis. Whilst a person is not defined by any disease, its significance for the person, friends and family can never be underestimated.

There is currently no book like this. I suspect it will be incredibly hard to match it – and I feel somewhat this book taking the lived experience seriously is desperately needed given the relative abundance of books looking at dementia through other prisms, including strongly theoretical approaches, or books which are only accessible to a neuroscientific audience. Living realistically, and in a content way, with dementia is the big issue. What is particularly useful from this book is an overview of the sorts of services which are in existence following diagnosis (and which aren’t). I think this book fills that void after diagnosis where people often don’t know to whom to turn with the new news.

But the book, whilst fascinating and optimistic, also does depict a realistic view of the dire way in which ‘post diagnostic’ life is all too often organised from care and support services. But from this commissioners and other professionals can think constructively about what we’re missing, contemplate how we wouldn’t necessarily wish to start from here, and feel more than a morsel of regret about not looking towards people living with dementia in the first place.

So many congratulations to Lucy Whitman. This is a seminal and unique contribution, which deserves wide praise. It must be widely read, and I am certain it will be.


My day at the Alzheimer’s Research UK Supporters Group at the Wellcome Trust London

“Our vision is a world where people are free from the fear, harm and heartbreak of dementia.”

The history of the society is indeed formidable, described clearly from 1992.

I remember asking the late Prof Richard Doll, eminent physician, how he discovered the link between smoking and lung cancer. He answered with characteristic humility ‘serendipity’, and then quoted a definition of serendipity as ‘looking for a needle in a haystack and finding the farmer’s daughter’.

I think research does involve serendipity.

For example, it has only latterly been recognised that inflammation has quite a big rôle to play in neurodegeneration processes too; and my hunch is that this may one day form a way of approaching dementia pharmacologically.

How certain biological substances form and build up in the brain in dementia continues to be a curiosity. I remember being much inspired by the work of Prof Maria Spillantini at Cambridge, who was always incredibly modest about the advances being made in her laboratory.

I loved my day yesterday at the Wellcome Trust here on Euston Road in London.

Few people have really made an impact on me as when I saw Valerie Blumenthal talking about living with symptoms of a type of dementia called posterior cortical atrophy on BBC Breakfast. I am in fact hugely looking forward to Valerie’s book, which I anticipate will be brilliant.

Possibly it is in fact impossible to draft any strap line of a charity focused on dementia, but the mission statement of the Alzheimer’s Research UK is as good as one might reasonably wish for.

I happen to hold a personal position that research into dementia should be also be of benefit to those 47 million in the world who live with dementia daily. This not only might include treatment for symptoms, maybe memory, but also practical assistive help; or even therapy which might slow the disease process right down.

But it also does very much include active prevention of disease in people who already have developed dementia. I feel that the workstreams in non communicable disease led by WHO have had huge impact here.

Do I feel that there will be a pharmacological offering for dementia? For the whole of dementia, no, but for select different types of dementia, definitely maybe. I think we’ll be one day where cancer is, but this is only possible with parity of funding.

Do I feel it’s fair to blame charities on the woes of dementia policy elsewhere? No. It is up to voters and political parties to make the case for investment in social care, which clearly has been deficient until now. I don’t think it’s possible to make charities such as Alzheimer’s Research UK ultimately responsible for everything in dementia policy.

Do I feel I met some very nice people? Most definitely. I met members of public, ARUK staff and scientists who are extremely good people. Chris Roberts and Jayne Goodrick were there too – like family to me.

I think Hilary Evans leads the charity with remarkable clarity – to a degree that is really quite exceptional even in this crowded field – and had a very clear understanding of the raw societal challenges of dementia. My overall feeling, from doing a day of workshops which were thought provoking and enjoyable in equal measure, was that the charity is definitely in ‘listening mode’ and is in fact using its considerable responsibility to execute extremely good work. The charity is opposite to arrogant in its attitude, and had both a realistic and achievable view of what it hoped to achieve in the next few years.


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