Month: February 2015

Good luck to Julianne Moore for #Oscars2015

Shibley Rahman 0 Comments

still alice still

Recently, I asked someone living with dementia whether he recommended I should watch “Still Alice”. He is yet to see the film.

He emphatically said, “yes”. In fact, he informed me that he would indeed buy the film if he thought it was any good.

“Still Alice” is a 2014 American drama film written and directed by Richard Glatzer and Wash Westmoreland and based on Lisa Genova’s 2007 bestselling novel of the same name. The film stars Julianne Moore in the role of Dr. Alice Howland, a Columbia linguistics professor diagnosed with early-onset Alzheimer’s disease.

Alec Baldwin plays her husband John, an ambitious medical researcher. Kristen Stewart, Kate Bosworth, and Hunter Parrish play her children Lydia, Anna, and Tom.

I was not looking forward to watching this film at all, despite its brilliant reviews. In a way, the film is in a ‘no win’ space of having not to over-glamourise dementia, and yet simultaneously not to depict it in overwhelmingly negative terms.

As someone who has been an academic and/or practitioner in this field since 1997, I really think the film is an excellent attempt at this very difficult topic.

No one person’s experience of dementia is the same as somebody else’s; and your perception of that person with dementia will depend on a huge number of factors, not least your own preconceptions and the coping strategies of the person living with dementia. The portrayal of Dr Alice Howland is completely believable though.

Dementia doesn’t just affect old people; although your risk of dementia increases as you become old.

The film is to be praised for emphatically demonstrating that the diagnosis of dementia affects friends and families, and not simply a person in isolation. Whilst the character Dr Alice Howland is initially told the possible diagnosis alone, it is clear that the whole family becomes involved.

There is a sense of the ‘prescribed disengagement’ which Kate Swaffer, living with dementia in Australia, has so graphically described. All too often the diagnosis of dementia is articulated as an ‘end’ rather than a beginning. I inevitably watched the film through the prism of how much it promoted the notion that it is possible to live better with dementia.

The effect on work in this particular story is interesting. I am mindful of other criticisms that portraying her as a linguistics professor is over-egging the topic somewhat, but reality can be larger than life. Prof John Hodges’ team in Australia, as is known publicly, was involved in charting the change in language profile of Iris Murdoch, renowned author and wife of Prof John Bayley who has recently sadly passed away.

In someone presenting with a clinical picture of early Alzheimer’s disease, with that particular distribution of abnormal amyloid protein in the brain (although we are not given precise details), as shown by PET neuroimaging, it might be entirely reasonable to seek out a genetic diagnosis such as a presenilin mutation. I realise that Dr Alice Howland is a fictional character, but the issue of how the issue of certain types of dementia might run in families is a very active one both in the US and here in the UK.

I quite liked the use of internet chat in the film. All around the world, there is interest in the intelligent use of technology to connecting unique individuals with dementia to others, and indeed to their past through the method of ‘life story’.

No film on this topic would be expected to be anywhere near perfect, and some of the issues will be raw for many, such as the choice of care homes and behaviour in them. However, I think that this film is as a good attempt as any to cover some hugely important issues.

I of course have reservations about aspects of the plot. Some people I know hated the film and the book. But I do wish Julianne Moore well, and I hope that she wins best Actress in the Oscars 2015 tonight/this morning.

Life story: an essential tool in living better with dementia

Shibley Rahman 0 Comments

story

A life story is the essence of what has happened to a person. “Life story work” is not just about gathering information about a person’s life. It can cover the time from birth to the present or before and beyond. It includes the important events, experiences, and feelings of a lifetime. It can be a very helpful tool for dementia care.

Someone’s life story describes a human process uniquely lived by an individual. It directs the individual’s way of looking upon her self or himself and is, therefore, an important component in a person’s identity. To have a feeling of personal value, it is essential that the individual is seen. Life story work can be helpful in understanding more about the person’s interests and preferences. Listening to someone else’s story is a powerful way of bestowing value on that person. From birth to death, people live through many struggles, joys, relationships, triumphs, and disappointments that structure the meanings assigned to their lives.

Things which might be included are:

  • factfiles: lists of likes and dislikes/preferences, mother’s name, primary school
  • personal accounts: stories about first day at school, a holiday, what life was like in X during a certain period of time. photographs, family trees.

A person living with dementia is just that: a person first and living. Often for the person living with dementia, their main interaction with others is focused on personal care tasks. Whilst these are essential, a person is more than a group of tasks and should not only be defined by what they need.

Despite the progressive nature of dementia, persons with dementia show they still have the ability to recall past memories and to experience improvements in their perceived wellbeing. This provides an opportunity for care staff and other professionals to use life review and life story book as a part of care activity to improve and maintain the wellbeing, cognitive function and mood of individuals with dementia as long as possible. The emphasis on individual’s life stories and experiences appears to help staff to get to know residents better, and offers the potential for more individualised, person-centred care which recognises the importance of the person’s biography.

According to Linde (1993), there are two criteria to be fulfilled in a life story. First, a life story should include some evaluative points, which communicate moral values of the narrator. Secondly, events included in a life story should have a special meaning and be of such significance to the narrator that it can be told and retold throughout life. The use of biographical and life story work has a long history in dementia care, although the opportunities for people with dementia to express themselves by telling their story may be limited.

But life story work is not just about gathering information about a person’s life. What is important is the way in which the life story information is gathered. The challenge is to ensure each person lives well. This can be achieved by really getting to know the person through the development of a life story and focusing on the person’s abilities now, what they were and what they are interested in.

There is evidence to support the view that life story work can improve the relationship, whether family or professional, between the person with dementia and their carer(s). Persons are likely to describe life story work as an enjoyable activity. However, it is not just the activity that makes the event enjoyable, it is the forging of companionship that accompanies the sharing of the book which matter too. Benefits reported usually include enhanced well-being; improvements in mood and some components of cognitive function; and reductions in disorientation and anxiety and improvements in self-esteem, memory and social interaction.

In his seminal book “Dementia reconsidered: the person comes first”, Kitwood (1997) recognised these threats to the personhood of people with dementia and stated that biographical knowledge about a person “becomes essential if that identity is still to be held in place” (p. 56).

Kitwood (1997) suggested that one way of holding identity in place is through the conduct, production and use of a life story. Kitwood here defined personhood as ‘a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being. It implies recognition, respect and trust.’

Other useful discussions of personhood are found on the Alzheimer Europe website.

Life story work offers a chance for family carers to illustrate the personhood of their relative; and allows care staff to get a sense of the person behind the dementia and make links between the person’s past and the present, so helping them respond more sensitively to need. Kitwood (1997) developed a framework of person-centred care that acknowledged the person with dementia’s sense of self, supporting care staff to act in ways that promoted a person’s sense of identity, autonomy and agency.

There is much debate in the literature as to what extent the self persists or diminishes in people with dementia. Some researchers contend that the self remains intact throughout the course of dementia. The common failure to recognise the individual’s continuing awareness of self can lead to low expectations for therapeutic intervention, to interactions that are limited to the task at hand (such as activities of daily living) and, therefore, to less than optimal experiences for a given level of dementia.

When a family member gradually loses the ability to tell or remember his/her life story, close family members often support the patient by taking over the storytelling or adding details to the story. Previous research has shown that this type of collaborative storytelling can be a deeply moral activity for the patient and his/ her close relative(s) in that there is a strong commitment to supporting the patient’s identity through the storytelling. Spiritual reminiscence, a type of narrative gerontology, has an important place in individual and community experiences of ageing. It is a way of telling a life story with an emphasis on what gives meaning to life, what has given joy or brought sadness. The process of spiritual reminiscence can identify issues of anger, guilt, or regret.

A number of challenges can potentially present when using life story work with people with dementia. Private and personal stories might, perhaps, sometimes divulged during the life story work process. Also it might also be possible to have a life story book that is rushed, contains errors or is of poor quality somehow detracts from the person and their life. There is a need for a final quality checking process that includes the person with dementia and family members before life story books are completed. But life history information can be recorded in a range of different ways including life storybooks, leaflets, collages, memory boxes and/or electronic formats.

 

References
Kitwood, T. Dementia Reconsidered: The Person Comes First. Open University; Buckingham: 1997.

Linde C. (1993) Life Stories: The Creation of Coherence. Oxford University Press, New York.

The English ‘Dementia Vision’ is a despotic dystopic farce

Shibley Rahman 0 Comments

Dystopia

It’s a moot point whether the new ‘owementia Vision’ document, formally called the ‘Prime Minister’s Challenge on Dementia 2020′ will last longer than the current Prime Minister. Any reasonable person would feel that this has overstepped the line of political decency in being excessively partisan.

It was not so much published yesterday, but, rather, sneaked out under the RADAR of an announcement about how there were now one million ‘Dementia Friends’. Of course, this target was effectively gamed, by the offer of online routes for applying for a badge, and opening up new jurisdictions in the United Kingdom.

The new policy document is here.

One of the offerings in the new document is the reach-out to get a further 3 million dementia friends. Raising awareness of what dementia is is undeniably an important part of policy. But why could this project not been delivered across a number of dementia charities? Charities other than the Alzheimer’s Society have had their activities strangled off in an unbearably toxic atmosphere. The original press release claimed that “the £2.4 million programme is funded by the Social Fund and the Department of Health”. There is clearly also ‘mission creep’ in funding of this project. There then came the lucrative pitches for advertising agencies for this project as advertised by Public Health England. There’s overwhelmingly a need to lead a fight against dementia not necessarily to keep creative advertisers in gainful employment. How is it possible that the funds for a further reach-out for Dementia Friends can be successfully secured when social care is on its knees? Shouldn’t the responsibility of an independent dementia charity to campaign against a devastating situation in social care funding which has not been ring fenced since 2010? With nine out of ten care homes not meeting adequate standards for people living with dementia, David Cameron’s claim for the UK to the best place on the planet to have dementia is outrageously beyond contempt.

The first English dementia strategy was indeed an excellent document, making use of a wide variety of evidence; not simply documents produced by the Alzheimer’s Society. There is a vast number of Alzheimer’s Society initiatives mentioned, but not even with the most polite sop for others in the third sector. This complete lack of plurality in the third sector in dementia is reflected by the bare mention of specialist nurses, which have a huge amount to contribute in proactive case management. The fact that ‘Dementia Vision’ reads like a multi-author chain letter, rather than a coherent vision, is for me exemplified by the lack of acknowledgement that a national network of clinical nursing specialists in dementia would be in a great place to offer training and education of the workforce in dementia, and its different diagnosis.

But clearly this campaign has become severely muted in the rooms of the Downing Street and its friends, whilst the Health Services Journal is devoting a formidable supplement to it shortly. The whole issue of how people with dementia can avoid crises or hospital is a key one in health service provision, and whilst there is barely a mention of social care in the ‘vision’, apart from a ‘better care workforce’, there is mention of the infamous “Better Care Fund”:

better care fund dv

 

But even as Chris Ham, CEO King’s Fund, says, the Better Care Fund is not THE solution. And one of the main solutions on offer, with proper coordination of care, personalised care plans and data sharing, comes in the form of ‘whole person care’, completely airbrushed from the ‘Dementia Vision’ document.

Better Care Fund

The whole issue of the personalised care plan, as a mechanism for involving personhood throughout someone’s time post diagnosis with dementia, seems to be ignored, and the contributing members of ‘Dementia Vision’ are utterly wrong if they feel that they only apply to advanced care planning:

pcp

This is completely opposed to the current evidence-based literature. But this conveniently gets round the issue of clinical nursing specialists who are there at all points after the diagnosis of dementia. An Alzheimer’s Society “Dementia Adviser” will do. Funny that.

But I suspect that this is an inappropriate cheap political point, rather like the title of the document ‘Prime Minister Challenge on Dementia’, rather than a genuine disregard of important policy both here and abroad. Personalised care plans are covered in detail in the work from the Carers Trust and the Royal College of Nurse, and simply because of this disregard of this ‘Triangle of Care‘, together with the airbrushing of social care, my inclination is to flush the ‘Dementia Vision’ document down the toilet.

Dementia V|ision

How the excellent 2009 ‘Living well with dementia’ strategy document got transmogrified into a water-downed ‘dystopic’ wishlist for the Alzheimer’s Society is anyone’s guess, but the chaos in its formation is indeed charted well in Hansard. Even originally in February 2004, and a few months afterwards, the current Government were maintaining a pretence of strategy rather than a wishlist of ambitions.

For example

timetable for NSD

There are indeed some positive aspects to this, for example the investment in carers.

Greater support for carers: £400 million has been provided between 2011 and 2015 so that carers can take breaks and the Government has introduced significant legislative changes to better support carers, who for the first time will have the right to an assessment of their eligible need.

But even here the issues with the Dementia Action Alliance Carers Call to Action are not discussed. Nor is ‘life story’ discussed properly. The lack of evidence base for ‘Dementia Vision’, I feel, is the most haunting aspect of the work which will come back to haunt their authors. Particularly worrying is the extent to which the document will bind future Governments. The general parliamentary principle is no parliament can bind its successor, but with the catastrophic cuts in funding in social care does a new Government, if different from the Conservative Party and the Alzheimer’s Society, wish to fund a package for induction of top FTSE companies into ‘dementia friendly communities’. The whole dementia friendly communities is not without a significant body of critics worldwide, who have called it divisive and patronising, but this is another shoo-horn for domination from the Alzheimer’s Society. taxpayer

 

But then again this would be mitigated against if this programme could be organised by more than one stakeholder, for example the Joseph Rowntree Foundation.  As I remarked earlier this week, the “Dementia Vision” document reflects the ‘squeezed middle‘, between prevention of dementia at one end, care homes at another end, and aimless direction for those individuals attempting to live well with dementia who are in the meantime stuck in the middle. Sure, it is all very well to be ‘dementia friendly’, and I recognise the document’s recognition of international law in human rights, but there is no convincing discussion of equality and human rights. In the overall scheme of things, there are some reasons to be cheerful, as Ian Dury and Sube Banerjee put it, for example the EU ALCOVE recommendations for dementia policy.

Consequently, taken as a whole, the entire ‘Dementia Vision’ has turned sadly into a despotic dystopic farce. Dementia UK must, however, be congratulated though for being mentioned in a number of footnotes.

 

 

50 shades of drivel in incentivising dementia diagnosis in primary care in England

Shibley Rahman 0 Comments

50 shades

Nobody wants a person waiting unreasonably for a correct diagnosis of dementia.

This discussion is NOT about that.

The now infamous odious scheme from NHS England was designed to give GP surgeries £55 for every patient on their list who has been diagnosed with dementia in the six months up to next March, as part of a drive to get the rate of diagnosis up from about 50% to two-thirds of all those who develop the condition.

Identifying dementia in primary care could minimise the impact of a late intervention; however, it shows high rates of misdiagnosis.

Any misdiagnosis as dementia is of course a disaster professionally.

One of the reasons for problems in primary care may bethe lack of knowledge of adequate cognitive screening instruments.

This is not because it’s the GPs’ “fault”. This is an incredibly specialised area which needs to be done by trained professionals.

Yokomizo, Simon and Bottino (2014) indeed suggested:

“[Screening] Tests such as 6CIT, AMT, GPCOG, Mini-Cog, MIS, MoCA, and STMS seem to be good alternatives to the use of the Mini-Mental State Examination when considering factors such as application time, sensitivity, specificity, and number of studies. However, there is a wide range of tests with different characteristics, therefore it is recommended that the professional gets some expertise in a few number of instruments in order to be able to choose which to use, or use in combination, depending on the setting and the profile of the patient.”

The way in which the policy of incentivised case finding for dementia was introduced is beyond contempt.

The dementia identification scheme was not approved by the BMA GPs committee in negotiations on the 2015/16 GP contract. But this is symbolic of the general arrogant way in which policy seems to be imposed in a ‘there is no alternative’ manner.

In October 2014,  the GPC deputy chair Richard Vautrey said GPs did not need a financial incentive to diagnose dementia, which was something they were already doing, and the investment would be better spent supporting practices to care for these patients.

He said,

“Diagnosis of dementia is important, but chasing government targets is not, particularly if this undermines the doctor-patient relationship, which this proposal could do.”

Historically, the incentivisation of General Practitioners (GPs) to diagnose dementia began in 2011 with updated dementia strategy.

It is now becoming a matter of transparency and integrity that NHS England publishes the official impact assessment which accompanies this policy, and identify clearly where the sources for this policy lie.

Major depressive disorder can present with profound memory problems; it can also present with other symptoms, more traditionally associated with problems in the front of the brain, such as poor planning or apathy.

Major depressive disorder with psychotic features is relatively frequent in patients with greater depressive symptom severity and is associated with a poorer course of illness and greater functional impairment than MDD without psychotic features.

Multiple studies have found that patients with psychotic mood disorders demonstrate significantly poorer cognitive performance in a variety of areas than those with nonpsychotic mood disorders. The Mini Mental State Examination (MMSE) and the Dementia Rating Scale, Second Edition (DRS-2) are widely used to measure cognitive functions in research on MDD with psychotic features.

Wagner and colleagues (2011) reported that:

“the suggested cut-off scores for the MMSE and the DRS-2 in patients with MDD with psychotic features may in some cases produce false-positive indications of dementia.”

A risk of the incentivising scheme is that it potentially undermines the bond of trust between doctors and patients by giving GPs for the first time a financial incentive to diagnose a specific condition.

Whilst certain people who are accountable to boards of trustees or shareholders, GPs are accountable to their patients and to the clinical regulator, the General Medical Council.

Putting it politely, GPs are sitting on quite an explosive matter, and it’s fair to say that existent memory clinics could be better.

It can be difficult to persuade a patient, who is generally apprehensive about the diagnosis, to go to the psychiatric hospital for a memory assessment, especially when post-diagnostic support can be so patchy and poor.

The scheme is a textbook perverse incentive. The initiative is intrinsically unfair because it potentially GP practices with the previously lowest rates of diagnosis the most money.

The policy, more importantly, offends many professional physicians, who have studied medicine, both intellectually and ethically.

Dr Martin Brunet comments:

“We need a Memory Worker in every GP practice; someone who will visit the home within days of a diagnosis, offering flesh-and-blood support to anyone living with dementia. They don’t need to be nurses – though they could call upon their expertise if things get difficult – but they need to have time: time to listen; time to sit; time to visit regularly so that they become a familiar face, a friend even; a travelling companion on the journey called dementia.

These Memory Workers would need to be trained. Get someone like the fabulous dementia campaigner Beth Britton to head this up – hearing her talk for half an hour is enough to inspire anyone to see the person behind the dementia and to recognise the importance of expanding horizons rather than closing them down. We would need thousands of workers, of course, even if each one covered two or three practices. Can we find people to do this work? Of course we can, but it will take time, so we need to start now.”

But a group of GPs (Bell and colleagues, 2015)have further broken rank in an article entitled, “A diagnosis for £55: what is the cost of government initiatives in dementia case finding”

“Not only are we concerned about not reducing the memory gap, but the incentivisation of diagnoses of dementia has the potential to make things worse. The dementia diagnosis rate in Sheffield is higher than most (62%), but this creates more follow-up and support for people with dementia.

This affect waiting lists in the memory clinics, which have increased. A lot of work and resources have been spent to reduce the wait. We investigated the quality of GP referrals to memory clinics. Seventy-six per cent of GP referrals to our memory clinic included cognitive screens. The screens such as the 6CIT have good sensitivity and specificity in distinguishing people with mild to moderate Alzheimer’s disease to health volunteers who responded to an invitation to help in research on dementia. These tools will not have the same sensitivity and specificity if conducted on people who attend GPs with cognitive complaints, as this population will likely include many with functional memory disorder and due to depression. GPs are asked to exclude reversible causes of dementia. Testing of B12 and folate was high, but mood screening was included in only 26%. Depression is a severe debilitating disorder that is treatable. It is also a common comorbidity in people with dementia. We suggest that the financial incentivisation of the diagnosis of dementia may not achieve its targets in reducing the dementia gap, will increase the strain on GPs and Memory clinics, which may adversely affect waiting times and the provision of good-quality post diagnosis care and support for people with dementia and their families.”

The question is: where are the clinical leaders who wish to speak out the problems with this incredibly problematic policy?

References

Bell S, Harkness K, Dickson JM, Blackburn D. A diagnosis for £55: what is the cost of government initiatives in dementia case finding. Age Ageing. 2015 Jan 24. pii: afu205. Citation  here.

Wagner GS, McClintock SM, Rosenquist PB, McCall WV, Kahn DA. Major depressive disorder with psychotic features may lead to misdiagnosis of dementia: a case report and review of the literature. J Psychiatr Pract. 2011 Nov;17(6):432-8. doi: 10.1097/01.pra.0000407968.57475.ab. The citation is here.

Yokomizo JE, Simon SS, Bottino CM. Cognitive screening for dementia in primary care: a systematic review. Int Psychogeriatr. 2014 Nov;26(11):1783-804. doi: 10.1017/S1041610214001082. Epub 2014 Jul 15. Citation here.

 

Why have people living well with dementia become “the squeezed middle”?

Shibley Rahman 0 Comments

There’s been a huge amount of discussion as to who the real victims of the great international economic crash, caused by investment bankers, are.

One term which has been used has been “the squeezed middle“.

Irrespective of who exactly constitutes “the middle”, there is some general disquiet that the word “squeezed” perhaps is not necessary the most appropriate adjective. “Squeezed”, as others have suggested, moots ‘a mild discomfort’ rather than something which should cause much concern.

Likewise, both domestic and international policy in the dementias, I feel, suffer from this “squeezed middle” phenomenon. Here, the people with dementia themselves, and friends and family, become squeezed.

Paid carers often have an unpleasant settlement, in having to deliver care in fifteen minute slots, little job security sold in the name of ‘flexibility’ through zero hour contracts, no reimbursed expenses for travelling time, and sometimes breach of the national minimum wage.

Since the launch of G7dementia and the Prime Minister Dementia Challenge, arguably a form of ‘glocal’ marketing, there has been much interest as to who has been calling the shots.

We cannot go on like this.

When people speak of ‘not losing the momentum’ from the Prime Minister’s Dementia Challenge, there is often completely inadequate analysis to accompany.

We do not know as yet how much ‘communication’ has turned into ‘action’ with Dementia Friends, though achieving 900 000 “Dementia Friends” has arguably been an achievement. As a “Dementia Friend Champion”, I feel honoured to have been part of this social movement.

But policy runs the risk of overplaying its hand in discussion of prevention and risk factors. It’s thought that non-modifiable risk factors comprise quite a significant proportion of people with dementia.

At the other end of policy, we have the unseemly spectacle of ‘thought leaders’, some of which with unclear conflicts of interest, suggesting reduction of antipsychotic prescriptions in dementia, when they were the very ‘experts’ who were promoting the antipsychotics in the first place.

The idea that people with dementia, once they have received a robust diagnosis, can live well jars with a reality where people with dementia are left languishing without any involvement from health or care services in England.

When I first mooted the idea of ‘living well with dementia’, it was accompanied by quite significant apathy from clinical professionals.

The full details of my first book, “Living well with dementia: the importance of the person and the environment”, are here.

I have mostly seen discussion of ‘living well with dementia’ reduced to sloganeering and trite soundbites, when a change in culture was necessary.

This nearly excited coincided with ‘change agents’, ‘boat rocking’ and so on, accompanied by a “feel the lurrrrve” style of social media campaigning, which excluded the very people who needed to be involved.

A glowing example of failure of inclusion has been the tardiness with which a person living with dementia was opted onto the World Dementia Council; and even there, in the end, the person was not elected, and parachuted in through what appears to have been decision-by-CEO-emails.

So, in between the drive to prevention and risk factors, which no doubt includes health clubs in the private sector, looking forward in a view of five years or so, and a drive to keep drugs in the spotlight in later stages, there are the “squeezed middle”.

In reviewing the effects of the Prime Minister’s Dementia Challenge, it would be great also to look at parts of policy which really have not worked well, like the slashing of legal aid and problems in equity for advocacy.

The talk of improving the wellbeing of caregivers continues, but talk is cheap. You have to put your money where your mouth is.

Why is it claimed that 9 out of 10 care homes fail patients living with dementia, even after the Prime Minister’s Dementia Challenge?

I’d be the first to be delighted if there were a cure discovered for any of the hundred or so dementias. But we need a bit of the sunshine disinfectant Jeremy Hunt is so keen to share.

It has recently been reported that:

“Scientific and financial challenges have meant that, between 1998 and 2012, there were 101 unsuccessful attempts to develop drugs for Alzheimer’s disease, with only three drugs gaining approval for treating symptoms of the disease, it said.”

The whole world waits with baited breath as to what the forthcoming ADI and WHO meetings in Geneva will present.

But I suggest you don’t get your hopes up with the convincing rhetoric.

Book launches by Kate Swaffer and Shibley Rahman in Camden in June 2015

Shibley Rahman 0 Comments

Kate and I are making available a limited number of tickets for our joint event, to celebrate publication of our books on dementia later this year. This event is mainly by invite-only. If, however, you wish to be considered for one of these other tickets, we’d be delighted to meet you. Details of the event are here.   We provisionally intend to hold this event on Saturday 27th June 2015 between 12 pm and 6 pm at the Arlington Centre, Camden.     1. Kate Swaffer (@KateSwaffer) and Dr Shibley Rahman (@legalaware) intend to do a joint book launch later this year. Both books are being published by Jessica Kingsley Publishers later this year. Kate’s book is called, “What the hell happened to my brain?” Details are here. Information about this book:

“Kate Swaffer was 49 years old when she was diagnosed with a rare form of young onset dementia. Here, she insightfully explores issues relating to that experience, such as giving up employment and driving, breaking the news to family, having a suddenly reduced social circle, stigma surrounding dementia and inadequacies in care and support. Kate also shares her experiences in dementia activism and advocacy, highlighting the important role of social media in combatting isolation post-diagnosis. Kate’s empowering words will challenge preconceptions on dementia, highlight the issues that impact individuals living with a dementia diagnosis, and act as a source of comfort for them and their loved ones. The book will also be of interest to dementia care professionals.”

2. Shibley’s book is called “Living better with dementia: looking forward to the future”, as a follow-up to his irst book “Living well with the dementia: the importance of the person and the environment” which was received with critical acclaim. Details are here. Information about this book:

“What do national dementia strategies, constantly evolving policy and ongoing funding difficulties mean for people living well with dementia? Adopting a broad and inclusive approach, Shibley Rahman presents a thorough critical analysis of existing dementia policy, and tackles head-on current and controversial topics at the forefront of public and political debate, such as diagnosis in primary care, access to services for marginalised groups, stigma and discrimination, integrated care, personal health budgets, personalised medicine and the use of GPS tracking. Drawing on a wealth of diverse research, and including voices from all reaches of the globe, he identifies current policy challenges for living well with dementia, and highlights pockets of innovation and good practice to inform practical solutions for living better with dementia in the future. A unique and cohesive account of where dementia care practice and policy needs to head, and why, and how this can be achieved, this is crucial reading for dementia care professionals, service commissioners, public health officials and policy makers, as well as academics and students in these fields.”

Kate and Shibley have decided to make a limited number of tickets for this free event for this book launch available to all, but the event is generally by invitation only. If you’d like you to be considered for one of these limited number of tickets, please do let us know. Dr Shibley Rahman @legalaware

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

Shibley Rahman 0 Comments

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

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

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

This is great.

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

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

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

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

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

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

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

How much communication has been turned into action?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Communication skills for medical students on disclosing the possible diagnosis of dementia

Shibley Rahman 0 Comments

Dr Sharma and I will be hosting a communication skills session for final year medical students on Sunday.

We intend to use the following mock scenario on disclosing a diagnosis of dementia.

The aim of this session is to discuss how communication skills are assessed in medical examinations.

 

This is the actual example scenario on the MRCP(UK) website. The MRCP(UK) is the examination for the Membership of the Royal Colleges of Physicians.

The current marksheets are here.

The current criteria:

Clinical Communication Skills
Explains relevant clinical information in an Accurate
Clear
Structured
Comprehensive Fluent and Professional manner

Managing Patients’ Concerns
Seeks, detects, acknowledges and attempts to address patient’s or relative’s concerns
Listens
Confirms patient’s or relative’s knowledge and understanding
Empathic

Clinical Judgement
Selects or negotiates a sensible and appropriate management plan for this patient, relative or clinical situation
Can apply clinical knowledge, including knowledge of law and ethics, to this case

Maintaining Patient Welfare
Treats patient respectfully and sensitively and ensures comfort, safety and dignity

 

Scenario

Scenario

Scenario

Scenario


My bio for the King’s Fund meeting on dementia next week #kfdementia

Shibley Rahman 0 Comments

Dr Shibley Rahman

Academic in living well in dementia

(Independent.)

 

 

 

Dr Shibley Rahman primarily graduated from Cambridge in medicine. In his Ph.D. on dementia at Cambridge, he established the cognitive explanation for the presentation of patients with the behavioural variant of frontotemporal dementia, working closely with Prof John Hodges. As a keen research ambassador, he has published numerous peer-reviewed papers on cognition in neurodegenerative disease in well respected international journals. As part of his junior medical training, he worked on the cognitive disorders and dementia firm of the National Hospital for Neurology and Neurosurgery at Queen Square. His first book on dementia, “Living well with dementia”, was published in January 2014 to critical acclaim. His second book on further aspects of English and global policy is due to be published in July 2015. Finally, Dr Rahman is further trained at postgraduate level in English and international law and in business management. He therefore has a keen interest in service provision.

 

150 words

 

 

Shibley Rahman picture

 

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

Shibley Rahman 0 Comments

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

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

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

Full details of this one-day conference are here.

The hashtag for this event is

#kfdementia

.

Details of our discussion are as follows.

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

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

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

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

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

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

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

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

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

I have previously written about this here.

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

My original contents were therefore as follows:

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

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

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

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

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

tweet

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

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

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

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

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

//www.youtube-nocookie.com/embed/VD3epu4SB2Y

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

friends

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

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

Members of the ‘Dementia Advisory Group’ are:

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

The terms of reference are here.

It is stated that the Advisory Group will:

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

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

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

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

I feel that this would form a coherent strategy.

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

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

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

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

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

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

listen to ‘Clara Swinson Director of Social Care Policy DH ’ on audioBoom

//

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

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

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

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

The contents are here.

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

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

//www.youtube-nocookie.com/embed/rfjludYyeZU

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