Tag Archives: Kate Swaffer

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A realistic discussion of the infrastructure of “dementia rights” is needed for powerful advocacy

Amidst the hullabaloo of social enterprises clambering to mount the bandwagon of the latest fad to make a quick commissioning buck in praise of ‘rights’, it’s easy to forget the actual importance of dementia advocacy services. I’ve long felt that the two biggest problems with ‘dementia friendly communities’ apart from the obvious concerns about ‘what is dementia?’ and ‘what is a community?’ is the concern that the dementia friendly communities and their powerful branding might be viewed as some cost neutral alternative to real local services, and the relationship between the State and the community remained poorly defined.

LBC presenter Shelagh Fogarty  (@ShelaghFogarty) yesterday asked a question to her audience, ‘What do you think is important in a community?’ You might not miss the shutting of a local butchers if an out of town supermarket opens up closeby, but you might miss a legal aid centre if you need to query some claim such as in the personal independence payment.

There is a meme circulating on Twitter at the moment that this photograph of dogs sitting round the board room table represents the ‘decision making body’ of laws about healthcare of cats. This was supposed to mock Donald Trump’s latest defeat about healthcare in the US Congress. This reminded me of how global dementia policy is framed for the most part by people already with substantial power and influence who don’t actually live beyond a diagnosis of dementia nor are care partners.

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The law can be an ass, and its problem is that it represents only source of rights; but within that, there are various often conflicting sources of rights.  As an advocacy tool, to say you have rights is important. Just look at Rosa Parks.

Civil rights activist Rosa Parks refused to surrender her bus seat to a white passenger, spurring the Montgomery boycott and other efforts to end segregation.

But it is the case that the law (and, more precisely, the State) considers itself ‘within its rights’ to deprive you of your liberty, under certain circumstances.  People beyond a diagnosis and care partners are crucially different in one aspect at least – they are not criminals, but coming to terms with a medical diagnosis.  The issue comes when certain features quite unique to dementia, such as loss of decision-making capacity, can interfere with the State’s decision to deprive you of your liberty. And views differ. Like most law, there are nuanced arguments, but it is my contention that placard or shroud waving about rights is not enough at a local level for this, although it is strongly desirable to imbue an ethos of ‘rights activism’. In a world where experts are largely derided and not invited into the committee rooms of revolving-door celebrity attendees of dementia policy decision-making, I feel it is rather important to understand where some of the problems have come from.

Centrally, the law domestically for us, the Mental Capacity Act, gives basic tenets relating to mental capacity. The MCA says (and this comes verbatim from the NHS Choices website):

    • Everyone has the right to make his or her own decisions. Health and care professionals should always assume an individual has the capacity to make a decision themselves, unless it is proved otherwise through a capacity assessment.
    • Individuals must be given help to make a decision themselves. This might include, for example, providing the person with information in a format that is easier for them to understand.
    • Just because someone makes what those caring for them consider to be an “unwise” decision, they should not be treated as lacking the capacity to make that decision. Everyone has the right to make their own life choices, where they have the capacity to do so.
    • Where someone is judged not to have the capacity to make a specific decision (following a capacity assessment), that decision can be taken for them, but it must be in their best interests.
    • Treatment and care provided to someone who lacks capacity should be the least restrictive of their basic rights and freedoms possible, while still providing the required treatment and care.

I’ve already provided a description of the rudiments of mental capacity law (and best interests) in my first book on dementia ‘Living well with dementia: the importance of the person and the environment” (CRC Press, 2014).

The Law Commission in their recent pamphlet (No 372) entitled “Mental Capacity and Deprivation of Liberty”, I felt, set out rather neatly the various problems with this area highly relevant to people living with dementia.

And this sentence from the pamphlet is striking, particularly when you consider the annihilation of dementia advocacy services which accompanied the David Cameron Dementia Challenge:

“It is not acceptable to continue with the current system where many people’s rights have become theoretical and illusory.”

The law has to be enforceable at all times, and yet the current situation of deprivation of liberty safeguards (DoLS) is not good. The official figures also show an increasing number of DoLS referrals being left unassessed and statutory time-scales being routinely breached; in England, only 43% of the 195,840 DoLS cases referred to local authorities for during 2015-16 were completed during the year, and of those only 29% were completed within the 21-day time limit set in regulations.

I should like to quote a case study from this pamphlet verbatim, under the conditions of the Open Government license, which shows for me how it is so essential to get this right for every individual involved. This concerns the case of London Borough of Hillingdon v Neary (Hillingdon LB v Neary [2011] EWHC 1377 (COP), [2011] 4 All ER 584).

“Stephen Neary was a young man with autism and learning disabilities. He lived at home with his father, with high levels of support services funded by Hillingdon Council. Steven lacked capacity to decide where or with whom he should live. In December 2009, his father reported to social workers that he was having difficulties coping. The local authority arranged for Steven to stay in a residential support unit. However, staff found Steven’s behaviour very challenging, particularly around food, and were concerned about him returning home. His father wanted him to stay for a couple of days but agreed to an extension of a couple of weeks in the expectation that Steven would then return home. In fact, the local authority kept Steven at the facility for a year, including a period when he was subject to the DoLS regime. The Court of Protection held that Steven had been unlawfully detained and ordered that he must return home to live with his father. The court noted, in particular, that the local authority did not properly discuss its concerns or its plans with Steven’s father, and that Steven expressed a desire to return home. The decision-making processes of the local authority were criticised by the court.”

As it stands, the DoLS are contained in schedules A1 and 1A to the Mental Capacity Act, added by the Mental Health Act 2007.  The DoLS aim to ensure that adults who lack capacity to consent to being accommodated in a hospital or care home for the purpose of being given care and treatment are only deprived of liberty if it is considered to be in their best interests. In simple terms, the DoLS do this by establishing an administrative process for authorising a deprivation of liberty and a means to challenge any such deprivation. The DoLS apply to all hospitals (including general hospitals and psychiatric hospitals) and care homes (including private care homes). They do not extend to deprivations of liberty in supported living, shared lives, and private and domestic settings. The DoLS provide that a hospital or care home (referred to in the legislation as the “managing authority”) must apply to the “supervisory body” for authorisation of a deprivation of liberty on their premises.

There are other problems, other than the sheer volume of cases. Many feel the DoLS exhibit a strange disconnect with the Mental Capacity Act: the Law Commission comment, “the DoLS are seen as incompatible with the style and empowering ethos of the Mental Capacity Act, to which they are attached. The two are often regarded as separate legislation with different legal and philosophical histories“.

There are a number of key recommendations made in the pamphlet, and these are worth noting as they will apply to some people living with dementia:

    • The DoLS should be replaced as a matter of pressing urgency.
    • The Liberty Protection Safeguards should be accompanied by the publication of a new Code of Practice which covers all aspects of the Mental Capacity Act.
    • The Liberty Protection Safeguards should enable the authorisation of arrangements which are proposed (up to 28 days in advance), or are in place, to enable the care or treatment of a person which would give rise to a deprivation of that person’s liberty.

It is worth noting that this will still have to contend with international law, and at the time of me writing this the UK government has no intention of withdrawing from the European Convention of Human Rights (ECHR) despite the imminent triggering of Article 50, commencing the official Brexit process.

In Convention law, a major instrument governing human right, Article 5(1) of the ECHR provides that no-one shall be deprived of liberty unless the deprivation is carried out in accordance with a procedure prescribed by law and is necessary in a democratic society on one of a number of grounds (including, notably, “unsoundness of mind”). Article 5(4) provides that everyone deprived of their liberty is entitled to take proceedings by which the lawfulness of their detention shall be decided speedily by a court, and their release ordered if the detention is not lawful. In summary then, the underlying aim of Article 5 is to ensure that no one is deprived of liberty arbitrarily.

But this is not the only Convention right at play. Article 8(1) provides that “everyone has the right to respect for his private and family life, his home and his correspondence”. The right is qualified, and State interferences with the various aspects of the right are permitted where they are in accordance with the law and necessary in a democratic society in the interests of, for example, the protection of health. This is yet another example of where ‘dementia rights’ do not exist in a vacuum, and while placard waving for marketing purposes has a function, it cannot possibly convey the real issues in the actual activation of rights comprising realpolitik.

I believe therefore in ‘dementia activism’, therefore, there should be practical operation of campaigning for rights. It is true that human rights are universal and inalienable, but also for people in England and Wales nobody is above the law (the ‘rule of law’). This is the practical heart of the issue, For example, on 19 March 2014, the Supreme Court handed down its judgment in “Cheshire West”. This was a conjoined appeal of two cases, P v Cheshire West and Chester Council and P and Q v Surrey County Council. I refer to this case in detail in my second book on dementia, published by Jessica Kingsley Publishers, “Living better with dementia: good practice and innovation for the future”.

Lady Hale, giving the leading judgment, held that human rights are the same for everyone: If it would be a deprivation of my liberty to be obliged to live in a particular place, subject to constant monitoring and control, only allowed out with close supervision, and unable to move away without permission even if such an opportunity became available, then it must also be a deprivation of the liberty of a disabled person. Indeed, many have been critical of the Supreme Court judgment in Cheshire West and
argued that it was wrong as a matter of law. I think the power of this controversial judgment, however, cannot be understated in the context of campaigning for ‘dementia rights’. In particular, the judgment undoubtedly “pushes to centre-stage the
understanding that human rights are universal and that what it means to be deprived of liberty must be the same for everyone, whether or not a person is disabled“, as indeed stated by the Law Commissioners.

Unfortunately, a recent draft of the new Welsh dementia strategy referred to the UN Convention on the Rights of the Child (see e.g. p.15), for reasons best known to them. However, the critical piece of legislation for anyone who has been following this for the last few years, pursuant to the excellent campaigning work of Prof Peter Mittler CBE and Kate Swaffer CEO of Dementia Alliance International is the  UN Convention on the Rights of Persons with Disabilities, which was ratified by the United Kingdom in 2009.

This Convention’s purpose (UNCRPD) is to protect the rights of people who have long-term physical, mental, intellectual, or sensory impairments. Whilst not directly incorporated into our domestic law, it is applied both by the Strasbourg and domesticcourts as an aid to interpretation of the ECHR, including by Lady Hale in Cheshire West. The legal instrument is in my view pivotal in the analysis of Deprivation of Liberty Safeguards, and, if properly applied, could be a powerful legal weapon for people living beyond a diagnosis of dementia. However, its operation in England and Wales is affected by the decimation of law centres which came roughly at the same time as the David Cameron Dementia Challenge, and, while it is fantastic that social enterprises are now maximising value through the advocacy of rights, it is surely not to be forgotten that the stripping away of legal protection of people with dementia and carers has been a very real crisis following the Legal Aid and Sentencing and Punishment of Offenders Act (2012). The swingeing cuts to social care allied mental health professionals and others have been exasperating in contradistinction to the slick social media marketing of ‘I’m alright with rights’.

There are two articles in the UNCRPD which I think can be used to uphold the rights of people with dementia in the jurisdiction of England and Wales. Interpretation of these articles must take into account the parlous state of support legal advocacy systems for people with dementia and care partners. This might depend, in part, on recent legislation from the Care Act (2014) (see SCIE link).

The first is Article 14.

The guidelines on article 14 of the Convention on the Rights of Persons with Disabilities concerning the right to liberty and security of persons with disabilities state:

“6. There are still practices in which States parties allow for the deprivation of liberty on the grounds of actual or perceived impairment. In this regard the Committee has established that article 14 does not permit any exceptions whereby persons may be detained on the grounds of their actual or perceived impairment. However, legislation of several States parties, including mental health laws, still provide instances in which persons may be detained on the grounds of their actual or perceived impairment, provided there are other reasons for their detention, including that they are deemed dangerous to themselves or others. This practice is incompatible with article 14; it is discriminatory in nature and amounts to arbitrary deprivation of liberty.”

The second Article worthy of note is Article 12.

Article 12 of the UN Convention on the Rights of Persons with Disabilities provides that disabled people are entitled to legal capacity on an equal basis with others in all areas of life. Crucially, Article 12(3) obliges State Parties to provide access to the support that disabled people may require in exercising their legal capacity. Legal capacity is not actually defined in the Convention and interjurisdictional legal differences will exist, but it can be understood as the construct which gives our decisions and transactions legal significance, how we give effect to our preferences and choices in the real world. The significance of Article 12 lays in its demand that disabled people, including must enjoy legal capacity on an equal basis with others. Article 12 of the CRPD requires ‘equal recognition before the law’ for disabled people and Article 12(2) demands that State Parties recognise that disabled people ‘enjoy legal capacity on an equal basis with others in all areas of life’.

The key to this as indeed the Law Commission discusses is the notion of ‘supported decision-making”: viz,

“The main impetus for supported decision-making schemes has been the UN Convention on the Rights of Persons with Disabilities. In particular, Article 12 (the right of disabled people to enjoy legal capacity on an equal basis with others) has been interpreted by the UN Committee on the Rights of Persons with Disabilities as indicating that national laws should provide support to people with disabilities to ensure that their will and preferences are respected, rather than overruled by action which is considered to be in the person’s objective best interests.”

A danger, some argue, is that Article 12’s wording may permit the continuation of guardianship-style systems based on substituted decision-making, and the continuation of substituted decision-making models could potentially undermine the transformative potential of the entire Convention.

So the Law Commission fudge it a bit:

“We share the aim of ensuring that the person is supported so as to be able to exercise their legal capacity, including through making their own decisions, although, as noted above, we consider that there are some situations in which it may nonetheless be necessary and proper to overrule the ascertainable wishes and feelings of a person lacking the mental capacity to make a particular decision or decisions.”

This is very different from the soothing image of people holding up placards.

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The upshot is that member states must provide the resources and infrastructure necessary to develop models of supported decision-making. If indeed the disability rights community can encourage State Parties to interpret Article 12 in a manner consistent with the aims of the CRPD then it has the potential to deliver real improvements for the lives of disabled people. Ideally, the Dementia Alliance International with the support of their partner organisation Alzheimer’s Disease International, in synergistic strategic alliance with the International Disability Alliance, can pool resources and competences with shared aims.

As the Law Commission note, precisely what the CRPD requires in relation to laws that deal with mental incapacity is still not entirely clear. They claim rather contentiously that there has even been some debate as to whether the Committee on the Rights of the Persons with Disabilities (the UN body which monitors implementation of the CRPD by States Parties) has sought to impose obligations that are not contained in the CRPD itself.

The Law Commission in summary propose the following to outline the potential incompatibility with Article 14 and with Article 5(1) ECHR.

“(1) The Liberty Protection Safeguards are unlikely to comply with Article 14 of the CRPD as interpreted by the UN Committee, which contends that any deprivation of liberty on the basis of a person’s actual or perceived impairment (even where there are other reasons, including their risk to themselves) amounts to unlawful deprivation of liberty.24 However, and as noted in the consultation paper, it is not on its face possible to comply with both Article 5(1)(e) of the ECHR and this interpretation of Article 14 of the CRPD. Moreover, we note that the underlying right to liberty contained in the International Covenant on Civil and Political Rights (which the CRPD is intended to ensure is enjoyed equally by all, regardless of disability) is interpreted in a manner much closer to Article 5(1)(e) by the UNHuman Rights Committee.
(2) Within the limits of our terms of reference, we have sought to draft legislation that is in the spirit of the CRPD. In particular, we have sought to ensure that wishes and feelings are given a particular weight in best interests decision-making by our recommended amendments to section 4 of the Mental Capacity Act. We havealso provided for a regulation-making power enabling  a supported decision-making scheme to be implemented.”

The take home message is that it now looks as if the Dementia Alliance International, with their advisor Prof Peter Mittler CBE, were right all along in emphasising the importance of the UNCRPD. I would go a step further in arguing that the UNCRPD holds the key for lobbying of national governments to ‘up their game’ on national dementia advocacy services, far beyond the rhetoric of ‘dementia friendly communities’ and the ‘marketing of rights’.

 

@dr_shibley

 

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Why I nominated Kate Swaffer for a University of Wollongong alumnus award

Kate Swaffer has just beaten stiff competition to win the social impact category of the University of Wollongong alumni awards this year.

It was with pleasure that I, with no encouragement, independently decided to nominate Kate for this award.

On the one hand there are a few outstanding people advocating on behalf of people with dementia, an enormous heterogeneous group around the world.

These include individuals in the UK who are right at the forefront of policy decision making now and explaining in conferences what living with dementia is like and what they expect from services and research. But there is a growing band of people around the world who are also contributing diverse views, and together they build up a big picture.

So to isolate any one individual can be self-defeating, when they are all worthy of gratitude for the amount they put in.

I rarely make nominations, so I should like to feel that when I do so I mean it.

On the other hand, awards can be misappropriated for the marketing of organisations with a bottom line heavily involved. But taking a holistic perspective in the round, I think as a society we should appreciate people who are doing excellent work for the public good. We may not always agree on everything, but, to coin a phrase, a lot more unites us than divides us.

Part of my nomination request reads as follows:

“Kate Swaffer has most definitely demonstrated a hugely positive impact on both community and society. This work will have far reaching sustainable and enduring effects on the perception of dementia as well as the prestige of the University of Wollongong for very many years to come.

Evidence of impact is wide-ranging, I feel.

She lives with dementia, but this fact alone is barely to scratch the surface of her brilliance. Kate Swaffer is now Chair, CEO and co-founder of Dementia Alliance International, as well as Chair of the Alzheimer’s Australia Dementia Advisory Group. Within this year, she became a Member of the World Dementia Council, a remarkable achievement in itself as this is a board with highly restrictive membership with outstanding leaders in innovation in dementia service provision internationally.

Kate has also become Board member of Alzheimer’s Disease International, which means that she lies in an extremely pivotal position in the intersection of major stakeholders in dementia at a global level. As you will know, she is an Honorary Associate Fellow with the Faculty of Science, Medicine and Health, University of Wollongong. She is currently a Ph.D. candidate under Prof Jan Dewing and Associate Professor Victoria Traynor at Wollongong, proposing an autoethnographic study of dementia narratives and their ownership. As an academic in this field myself, I have every confidence that Kate Swaffer a remarkable and unique contribution to the academic field. She is in addition a trained Chef and a retired nurse, and these elements to her life can be felt, I feel, also in her almost daily blogging. This massively promotes wellbeing in society at large.

As a humanitarian, an activist and advocate for people with dementia, a published author, poet and international speaker, Kate Swaffer, in her own words, is now “living beyond a diagnosis of younger onset dementia” and came up with the elegant construct of ‘prescribed disengagement’ ®. Kate Swaffer is essentially someone who has refused to be ‘defeated’ by the supremely modest expectations of clinical professionals, in that Kate has kept her aspirations and ambitions at an outstanding level.

I should also like your panel to note further that, since my original application, Kate was a SA Finalist in the Australian Of The Year Awards 2016, winner of the 2015 National Disability Awards: Emerging Leader in Disability Awareness, winner of the 2015 Bethanie Education Medallion, and winner of the Stirling University 2015 International Dementia Leader Award. These, I submit, are clear examples of leadership, particularly in world recognition that dementia is a disability for which enablement is an obligation societally and legally.

As you will know, Kate Swaffer was also a plenary speaker at the World Health Organisation First Ministerial Conference on Dementia in Geneva in March 2015, the first person with dementia ever to have given a keynote speech at the UN World Health Organisation. Kate, I understand, still maintains close links with policy professionals in the World Health Organization.

And finally – Kate’s professional and research interests include quality of life and human rights and disability rights for people with dementia, stigma, discrimination and language in dementia. The SA Dept of Health produced a staff training DVD featuring her story. Her blog has been archived in the PANDORA collection of the SA and National Library, and is used extensively as an academic resource around the world. Her first dementia book “What the hell happned to my brain?: Living beyond dementia” was released in January 2016 by Jessica Kingsley Publishers in London. Her second book about dementia, co-authored with Associate Professor Lee-Fay Low, is to be released in September. I have constructive knowledge of feedback from people living with dementia, citing that the book has been instrumental in providing hope.

One person wrote to her stating that,

“Isn’t it amazing what some education, advocacy and peer counselling can empower us to do?””

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Kate Swaffer is admitted onto the World Dementia Council

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Late on Wednesday it was announced that the decision has been taken to admit Kate Swaffer to the World Dementia Council.

Kate Swaffer is Chair of Dementia Alliance International (“DAI”), which is a leading non-profit group of people with dementia from all around the world that seek to represent, support, and educate others living with the disease. DAI is an organisation that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

 

Kate, from Adelaide in South Australia, was diagnosed with semantic dementia – a form of fronto-temporal dementia – in 2008 at the age of 49.

Since getting her diagnosis Kate has become a campaigner, speaker and accomplished writer on dementia issues. In January 2016, her book ‘What the hell happened to my brain?” was published, and has rapidly become a landmark contribution of a detailed account of a lived experience with dementia.

In this excerpt from her first book about dementia, What the hell happened to my brain, Kate Swaffer has written this:

Subsequent to my being diagnosed with younger onset dementia at the age of 49, health care professionals and service providers all told me the same thing: “to give up work, give up study and go home and live for the time I had left.” On the way, it was also suggested I put my end-of-life affairs in order – even though at no time was I told dementia is a terminal illness. I was also told to get acquainted with aged care, including selecting a respite day care and residential care facility, sooner rather than later, so I could become used to it. My husband was told he would soon have to give up work to become a full-time family carer.  

Very quickly I termed this Prescribed Disengagement™, and thankfully I eventually chose to ignore it. Because Prescribed Disengagement™’ is a term I came up with, I was advised to trademark it before someone else did, and hence have done so.

Kate last year was awarded a distinction in her Master of Science in dementia care from the University of Wollongong.

 

The statement from the Dementia Alliance International reads as follows.

Dementia Alliance International (DAI) Chair Kate Swaffer from Australia has today officially become a member of the World Dementia Council, the second person with dementia to join this council. This is an important and significant appointment for DAI, and for people with dementia globally.  She joins another DAI member, who is also Vice Chair of the European Dementia Working Group, Hilary Doxford from the UK.”

Established by the last UK government, the World Dementia Council has the stated mission to champion dementia research and development and unlock investment around the world.

 

The membership of the Council is currently wide-ranging, but includes senior figures in dementia policy internationally.

On 16 October 2014, I wrote an open letter to DAI members which was indeed published on the official DAI blog, establishing my wish for the World Dementia Council to have members who are currently living with dementia. At the time, there were no such members, despite there being 47.5 million people estimated to be currently living with dementia in the world.

 

Kate’s admission to the World Dementia Council is a highly significant event.

DAI has been working towards full access for people with dementia to the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which is a global tool for achieving social change, this second appointment is particularly significant. Article 19 of the Convention is the right to live independently and to be included in the community. Indeed, Prof Peter Mittler is due to be presenting on this, on behalf of DAI, at the Alzheimer’s International Conference in Hungary in April 2016.

Article 29 on “participation in public and political life” enshrines an obligation for State Parties “to persons with disabilities political rights and the opportunity to enjoy them on an equal basis with others, and shall undertake to ensure that persons with disabilities can effectively and fully participate in political and public life on an equal basis with others.”

 

The four major prongs of the World Dementia Council’s work currently are integrated development, “optimising the path of medicines from research through to market by reducing barriers & encouraging regulatory flexibility”; finance and incentives – “looking at ways to increase the relatively low investment in funding dementia innovation by exploring new types of funding product”; open science – “unleashing the potential of open science for sharing information and knowledge to accelerate progress in developing new treatments and care approaches”; and public health/prevention – “The Council is also beginning an evidence review into existing research on how risk factors such as diabetes and heart disease relate to dementia, as well as looking into public health messaging on lifestyle and prevention.”

Even with the development of new drugs to delay the progression of the dementias, the leading cause of which is Alzheimer’s disease in the world, the need for prevention of progression of diseases through both cognitive and non-cognitive therapies will be essential. Kate’s input as a person living with dementia and as an accomplished student of dementia herself will be unique.

 

 

 

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Kate Swaffer is clearly a world class ambassador for living beyond dementia

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Err… since this photo was taken in the Hotel Adina, opposite the conference centre hosting the Alzheimer’s Disease International (ADI) conference for 2014, I have lost a lot of weight (I wish.)

But actually literally seconds before this snap was taken, Kate had said ‘you goose!’ in utter surprise when I suggested to Kate she should turn her roaming charges off. We were, of course, both in Australia, and the country of habitual residence of Kate is also Australia.

I have many happy memories of that conference, though overall I tend to be antagonistic of conferences. Most of the plenary speakers tend to be overwhelmingly underwhelming.

There are of course some exceptional speakers. I always enjoy the updates on Prof Martin Prince on epidemiology of dementia, with a focus on low and middle income countries. I know this is a complicated area, as I am sure Prof Carol Brayne from my alma mater will demonstrate in Budapest for this year’s ADI conference.

Many of the pervasive issues internationally about living with dementia also relate very much to domestic jurisdictions: including research, drug therapies, timely diagnosis, care and support, enhancing health, and dying well.

Sometimes it can be all too easy to become an innocent pawn in massive corporate agendas, which sometimes tragically reveal themselves in slick ads from ‘big charity’, raising money, but pushing stigma of dementia to do so.

I first spoke with Kate over a rather greasy lamb moussaka. Beth was there. Beth and Kate took a mutual interest in what the restaurant had to offer.

I showed Kate the manuscript of my first book expecting her to be wholly uninterested in it: actually, the opposite was the case.

Kate’s background is not straightforward. A devoted mother and wife, haute cuisine chef (trained with the best people in this field), a distinction in dementia care from a world famous University, nurse specialist in operating theatres, volunteer in bereavement counselling, and, of course, keen international speaker on dementia.

I think Kate manages to update her blog every day, and has introduced an unique term called ‘living beyond dementia‘, which sums up a positive and flourishing approach – novel and original – setting aside the negative aspects of the impact of the medical profession in imparting a diagnosis.

Kate was the first person in the world to coin the term ‘prescribed disengagement‘ which was a huge impact in the field of dementia.

As Kate says, “This Prescribed Dis-engagement(TM) sets up a chain reaction of defeat and fear, which negatively impacts a person’s ability to be positive, resilient and proactive.”

“Dementia is the only disease or condition and the only terminal illness that I know of where patients are told to go home and give up their pre-diagnosis lives, rather than to ‘fight for their lives’.”

It is all too easy to become ageist about dementia, but it is the case that dementia encompasses conditions of the age which can affect people below the age of 65. Particular considerations for the so-called ‘young onset dementia’ might include how the diagnosis is arrived at, as well as subsequent impact on real lives such as family or employment.

I personally don’t think that academics can have the moral integrity to present the full picture, when what is truly valuable and a scarce commodity is the expertise and lived experience of people living with dementia.

I think it goes further than ‘working with not for’ in fact: it is more of a question of ‘who’s in the room’ at all. I think of the co-production imperative as ensuring there are ‘no more throw away people’ as per Prof Edgar Cahn. This, as Prof Peter Mittler reminded me recently, has a parallel in the inclusivity literature as ‘No one left behind’.

And above all – it is clear people having had a diagnosis of dementia feel great comfort from the experiences of other people in similar circumstances who have reconfigured their lives accordingly. Indeed this should be the analogous to how people with physical disability are given ‘reasonable adjustments’. Whilst reasonable adjustments is a rather legalistic clunky term, it is an aspect which has been seriously lacking in the drug-focused medical model of dementia.

Kate Swaffer, not just living with a dementia, has an important narrative to tell, which is continually evolving. It is totally unsurprising that her being Chair of Dementia Alliance International (DAI), an international stakeholder group for people with dementia, has been welcomed as a huge success by Alzheimer’s Disease International.

It always seems like a marathon not a sprint, and a long one at that. I thought it was unbelievably clumsy that the World Dementia Council, a steering group on world dementia work, did not have a single representative living with dementia currently.

I indeed wrote an open letter on October 13 2014, which is on the DAI website here. I was of course ecstatic when Hilary Doxford, a mutual friend and colleague, was appointed onto the WDC, as documented here.

Kate is a world-class advocate for people with dementia, and, take it from me, a force to be reckoned with.

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Vlog on @KateSwaffer's "What the hell happened to my brain?" (pub Jan 21, 2016)

I received this morning my copy of “What the hell happened to my brain?” written by leading international advocate in dementia, Kate Swaffer. This book is due to be released by Jessica Kingsley Publishers on January 21st 2016. I received an advance copy as I wrote one of the Forewords. The other Forewords have been written by Dr Richard Taylor Ph.D. and Glenn Rees AM Chair of Alzheimer’s Disease International.

Kate is Chair of Dementia Alliance International, the international stakeholder group run by people living with dementia. I feel this book will be incredibly useful for a diverse audience, including doctors – especially those completing specialist training in medicine (general medicine, neurology, psychiatry, surgery especially) – as well as members of the public newly diagnosed with dementia.

I know Kate Swaffer held Dr Richard Taylor Ph.D. in very high esteem. I found the chapter dedicated to him, and his Foreword, very moving.

This book is all about living ‘beyond a diagnosis of dementia” – Kate’s phraseology TM. Kate was the first to articulate and explain the phenomenon of ‘prescribed disengagement’ how people at the point of diagnosis are often put into a process of managed decline when they could be given opportunities for an enriched life. This of course goes together with essential practical help, such as things you can do such as driving. It also explodes myths out of the water – and ignites a provocative debate on the ‘big money’ in dementia, disability discrimination, an urgent need to rework the medical label of ‘challenging behaviours’, early vs late diagnosis, stigma, loneliness, inclusion, and guilt.

It’s not hyperbolic, nor puffery, to claim that you won’t be able to put this book down. It’s an outstanding book, and I strongly commend it to you.

 

Dr Shibley Rahman  London : 15 January 2016

 

 

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Review of my book 'Living better with dementia' in Mental Health Today

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Many thanks to Fenella Lemonsky (@organiclemon) for this helpful review of my book in “Mental Health Today) [here is the link to the original article.]

I find reviews like this a useful steer on future work. Academics can be notorious in misjudging the ‘mood music’ of the main drivers behind the service: people who use the services, which in my case are people living with dementia, their friends and family and other carers. I am in a privileged position in having access to thousands of peer-reviewed papers, but also feel that I have learnt a lot about the dementias from people living after a diagnosis. My knowledge of dementia has vastly improved since I took myself away from the medical lens, and adopted a viewpoint of other professionals and practitioners and people living with disability.

 

The Forewords to this text are by Kate Swaffer (@KateSwaffer), Chris Roberts (@mason4233) and Beth Britton (@BethyB1886).

 

The book is on Amazon here.

 

The review:

 

Shibley Rahman, 2014, CRC Press, ISBN 978-1908911971, £29.99

There has been much written and spoken about dementia in the media recently as a result of the government’s Dementia Strategy, which aims to help those with dementia, their families, professionals and carers be more responsive to needs.

In this context, Living Better with Dementia, by Dr Shibley Rahman, a dementia expert who is qualified in medicine, neuroscience and law, is highly relevant.

Initially, Rahman talks about the stigma of dementia and how this has remained through the past century, despite dementia becoming better understood and having a more positive outlook in recent years. While dementia and the whole management perspective can appear a challenge as the older population survives longer, this book is encouraging and positive. Specific medication that delays the onset of dementia symptoms and other medication like antipsychotics are discussed at length, including their use in nursing and care homes and how specific practices that have no evidence base can be challenged.

Two chapters that for me stuck out as very important were on young onset dementia and on antipsychotics and innovation. Young onset dementia was first explained to me at the author’s book launch, where nurse lecturer Kate Swaffer from Australia, who has young onset dementia, gave a moving talk. The impact is huge for the individual, their family and peer network as well as professionals. It affects employment, career opportunities and has a huge stigma attached to it as it is still often misunderstood. This is all discussed in the book.

The use of antipsychotics and care homes is also discussed at length. This is an important chapter, especially for those who look after those going into residential care, and it can enable them be on alert to good practice and how to spot where medication is used inappropriately. Antipsychotics use in care homes is a complex issue. In many cases careful use can ease distress and agitation, but there seems to be concerning evidence that there is over-prescribing of antipsychotics where behavioural treatments are more appropriate. Using extensive research, Rahman explains why using antipsychotics needs careful thought.

Other chapters focus on deprivation of liberty, sporting memories, global view and leadership strategies.

This is a well-written, extensively researched, easy to read and important book for anyone interested or working with dementia.

Rating: Highly recommended.

Review by Fenella Lemonsky, mental health service user researcher

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#WorldAlzheimersDay – who is protecting whom?

Assessing risk is a critical part of English dementia policy at all levels. I again found myself talking about risk as I saw responses to World Alzheimer’s Day which was yesterday on September 22nd 2015.

I don’t especially like the term ‘wandering’ for people with dementia. This term, like ‘challenging behaviours’ has become seemingly legitimised through the hundreds of papers on it in the scientific press, and the grants no doubt equivalent to hundreds of thousands of dollars probably. I think the term, intentionally or not, attributes blame. And as I moot in the tweet below, this is potentially a problem, especially one considers that a dementia charity should not ideally be fundraising out of sheer fear.

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Don’t get me wrong. I think charities have an incredibly important part to play, and they do, in educating people about dementia; and generally ‘raising awareness’ howeverso defined. Take for example this helpful tweet from the Alzheimer’s Disease International containing a relevant infographic about the scale of the dementia epidemiology.

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I had a hunch that something was very awry about yesterday when my colleague Simon Denegri tweeted something which caught my eye. Let me introduce you to Simon. He’s Chair, INVOLVE, NIHR National Director for Patients and the Public in Research, and, importantly, a nice guy.

The tweet, and the main subject of the research, is pretty self explanatory in fact.

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The point Simon raises is worth thinking about, I feel. Is updating the epidemiology of dementia every year, nay every month, or even every week, an effective way of genuinely raising public awareness – or is it rather a lazy way to campaign on it? Obviously, playing devil’s advocate, one should argue that this main issue should be raised until something happens, but with a cure for dementia a long way distant it seems that this option is not likely.

So how about offering some solution instead? In other words, having scoped the problem, why not offer hope instead of fear through the huge volume of research in improving quality of life for people living with dementia and carers. Here’s the thing: there are 850,000 people living with dementia at the moment currently, and there’s got to be something in it for them with all this coverage.

I call fixating on the ‘tsunami’, ‘time bomb’ or ‘tidal wave’ “the shock doctrine” to make you want to dig into your deep pockets, to make you donate to a dementia charity. BUT  – with social care funding on its knees, having not been ringfenced since 2010 – is this actually a luxurious response to a rather serious immediate problem? Long before #DementiaWords ‘got sexy’, I presented my poster (PO124) on the hyperbolic language used in the G8dementia proceedings, in the Alzheimer Europe 2014 conference.

Here’s the rub.

Jeremy Hughes and the Alzheimer’s Society have been hugely successful with the ‘Dementia Friends’ campaign, which has seen a roll-out of information sessions on the basics of dementia for the whole country. Yesterday was a good opportunity to talk about that.

Dementia Friends

But meanwhile Alzheimer’s Research UK, which indeed does formidable work for the research infrastructure on dementias in the UK, rolled out this in a blogpost yesterday. The phraseology of the remark, “At Alzheimer’s Research UK, our hope is for a different kind of future, one where future generations will be free of this life-shattering condition”, is the opposite to one of the central messages of Dementia Friends, that ‘it is possible to live well with dementia’.

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I don’t, of course, want to downplay the huge significance of the disclosure of the diagnosis of dementia as a life event for all those involved, not least the direct recipient of that diagnosis.

Sadly, we’ve been here before. All of these came to the fore when Richard Taylor PhD, one of the founding members of Dementia Alliance International, (DAI), pleaded, “Stop using stigma to raise money for us”, in the Alzheimer’s Disease Conference in 2014 in Puerto Rico. Actually, the DAI, a group run by people living with dementia, has been working with Alzheimer’s Disease International to make things much better, in no small part at all due to the gigantic efforts of its current Chair Kate Swaffer (@KateSwaffer).

All of this leads to me wonder who exactly is protecting whom? I wouldn’t go so far as to say that the public needs protecting from large dementia charities, but the sway they hold on policy is not inconsiderable; whether this is on the cure v care resource allocation in dementia, or whether there should be specialist nurses as well as dementia advisors (as I argued this year both in the ADI and Alzheimer Europe conferences).

There’s no doubt, as regards safeguarding issues, that people with dementia need to protected from risk where it is proportionate to do so. As I have long argued, you need to embrace risk to live well with dementia. But it is worth thinking about on whose part we are negotiating risk? Damian Murphy’s excellent blogpost yesterday emphasises how we cannot necessarily assume that carers and persons with dementia have the same (or even similar) viewpoints: this is directly relevant, say, on whether a person with dementia with a carer gets a GPS tracking device?  (I duly anticipate and expect Damian’s contribution here, by the way, to be seminal one, by the way.)

A long time ago when I was reading some of the management literature, I was really impressed by a paper to which Prof Michael Porter contributed on strategy and society (co-author Mark Kramer) in the Harvard Business Review.

Mark in a slide once summarised four crucial tenets of observing this re-articulated corporate social responsibility thus.

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I, for one, would like to see all campaigning done by the dementia charities seen through this prism; and also bearing in mind the clinical, if not societal, question cui bono?

 

 

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'Dementia friendly' checkouts: more than a fad?

Tesco and Asda are two of the stores which have introduced ‘dementia friendly checkouts’ in supermarkets according to two reports.

Both reports refer to ‘training’ even though the Alzheimer’s Society state clearly ‘Dementia Friends’ is about information sessions, not training Both reports refer to the ‘Dementia Friends’ programme and the Alzheimer’s Society. I myself am a ‘Dementia Friends Champion’, and indeed I am due to give an information session at BPP Law School next thursday (details here).

Dementia Awareness Week was about sharing wider knowledge about dementia, rather than promoting the Alzheimer’s Society solely though the Alzheimer’s Society should be congratulated for giving the week momentum; and the the success of this, arguably, is reflected in the diversity and quality of tweets using the hashtag.

Alzheimer’s Research UK came up with an intriguing idea – the auction of hats to raise money for research into dementias. I myself know recipients of these grants, and the work invariably is outstanding. We must be keen to promote research into care as well as cure, however, and this needs the correct political lead.

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Of course, by doing ‘Dementia Friends’ you’re not supposed to be “locked in” to working only as a volunteer for the Alzheimer’s Society. There is no such exclusivity requirement. And there’s no better time than now to campaign for dementia, such as the petition here against Hull Clinical Commissioning Group in their short-sighted decision not to commission Admiral nurses (a type of clinical nurse specialist for dementia).

The ‘dementia friendly communities’ policy tranche is indeed global, and spearheaded by a number of protagonists, including Innovations in dementia and the Joseph Rowntree Foundation. At a time when there is still much stigma and prejudice against dementia in society, the aim was to provide an environment which was conducive for people living with dementia, friends or families to lead fuller lives. This is, of course, a very laudable policy aim, and involves not just the health and care systems, but the wider ‘social determinants of health’ such as retail and banking, housing and transport.

It is worth at this point considering the irony of the approach of ‘dementia friendly checkouts’ in the context of the ‘Dementia Friends’ programme. One of the five key messages of this information session programme is that ‘There is more to the person than the dementia’. This was explained to me last year in Glasgow by Joy Watson as “putting the ME in deMEntia”.

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The issue is that in person-centred approaches in dementia post-diagnostic care and support people aren’t defined by a label. For example, you should be very careful about the use of the word ‘elderly’. There are some NHS Trusts that define ‘elderly’ for the purposes of their acute medical take as patients above the age of 65; others above 85. And, as Chris Roberts said to me once, the differences between people aged 55 and 65, 65 and 75, 75 and 85, can be big or small. We all know 68 year olds who appear quite ‘frail’ but 85 year olds who appear quite ‘spritely’. But the issue is that, as far as commissioning is concerned in the NHS and the voluntary sector, things tend to get defined by their labels, such as new ‘million pound frailty units’. I’ve seen it before – that policy based on fashion or trends invariably ends in tears.

I think if you chat with people what they think about supermarket checkouts you will get a proportion of people who report that they’re chaotic stressful places. Many people without dementia dislike them. I in fact dislike them, not living with dementia; which is why I buy my shopping online. I also don’t know many people who meticulously count their coins in paying for their weekly shopping, so huge banners with coins may not help.

People living with dementia often describe members of the public raising the volume of their voice at them as if they’re ‘stupid’. It could be that you have problems in recognising the shapes of coins. This is called a ‘visual agnosia’. I know the late Sir Terry Pratchett described not being able to recognise a 50p coin from its shape, which is a touch form of the same cognitive condition, called ‘tactile agnosia’, which can signpost a diagnosis of ‘posterior cortical atrophy’ type of dementia.

As Pratchett was reported to have said,

“For some, they might struggle in a supermarket with finding the right change. That nagging voice in their head willing them to understand the difference between a 5p piece and £1 and yet their brain refusing to help them. Or they might lose patience with friends or family, struggling to follow conversations.”

Again a big banner won’t help. And for people with classical Alzheimer’s disease their long term memories will be very good as opposed to their short term memories.

A more appropriate term for examples such as the ‘dementia friendly checkouts’ might be ‘dementia inclusive communities’ – and this is indeed keeping with rights-based advocacy, where stakeholders uphold their equality (and for the time being human rights) rights under the law. But there maintains for me, and many others, this stubborn strand in policy in whether it is in fact creating inclusivity or ‘otherness’ for “people with dementia”?

“People with dementia” is a homogenous term which is not only an injustice to the hundred or so different types of dementia but also an injustice to the 47 or so million people living with dementia all with different abilities in cognition. ‘People with dementia’ are most likely to have cognitive disabilities more than ‘people with bowel cancer’, but one must be mindful of the fact one would think twice about having a special shopping aisle for people with operated bowel cancer (for people with colostomy bags).

Of course, the argument is at risk of getting utterly ridiculous. But this issue became very vibrant indeed as one of the producers of the film “Still Alice” asked the people living with dementia in a crowded lecture theatre in Perth, Western Australia, to stand up to identify themselves. The general ‘feedback’ is that this stunt was generally felt to be rather humiliating, and Kate Swaffer, Co-Chair of the Dementia Alliance International (DAI), received a number of complaints about it. The DAI is the leading international group consisting only of people living with dementia.

We are in a different place with stigma and dementia to where we were with physical disability, possibly. I am physically disabled, so I feel “within my rights” to discuss this. Many people find the word ‘disabled’ and being in a wheelchair “empowering” – many disempowering. You can take your pick as to whether people with dementia want to be identified in a separate shopping aisle in a public supermarket. But this criticism is not one which I have intended to level at proponents of ‘dementia friendly supermarkets’ – it’s simply a wider policy observation as to whether, yet again, the policy promotes inclusivity or otherness. There will be people who believe that ‘all publicity is good publicity’, but you can unfortunately have the wrong type of publicity (like the wrong type of snow).

And all this does matter if we are to bridge the lived experience of all people who’ve received a diagnosis of a dementia and what the crude policy levers are trying to achieve. I do, however, wish to thank the people behind ‘dementia friendly checkouts’ for their excellent work.

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Our #ADI2015 was a triumph of hope in place of fear

The mood music is changing.

We’ve had circular discussions on ‘suffering’ before, to the point we probably agree to disagree, but have learnt to respect other people’s well meant perspectives. But I think it’s fair to say that the happiness and camaraderie which accompanied #ADI2015 is a very real one. I took this photo at a chocolate factory in Adelaide Hills. Nutrition and dementia, as it happens, was a key satellite theme of the #ADI2015.

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Here’s a film by Arc Seven Communications of Beth Britton explaining the need to consider what people with dementia can do.

Living well with dementia from Arc Seven on Vimeo.

As it happened precisely on the day of our return, as I was travelling from Kuala Lumpur to Amsterdam, Australia aired a brilliant programme ‘Insight’ on living with dementia.

It had been a huge pleasure to have returned from spending time with Kate Swaffer, Peter Watt and Colin McDonnell who all featured in this remarkable programme. In place of fear, I felt a substantial integrity was provided by having so many delegates living with dementia attend this year’s Alzheimer’s Disease International (ADI, @AlzDisInt) conference. We met up in Perth, Western Australia, in the middle of April, for three wonderful days.

My talk was on whether dementia care would easily lend itself to private markets. I received a lot of useful feedback from delegates. I basically pointed out the problems of trying to put dementia care under the philosophy of insurance contracts because of the potential asymmetry in information between insurer and person/patient. This information asymmetry, I argued, could come from, say, a complete genetic screen, if NHS England get their way in moving towards personalised medicine/Big Pharma. The problems arise if someone with a high genetic risk for dementia seeks insurance knowing he or she is at high or low risk; or whether a person obtains an insurance policy and then behaves in a high risk behaviour. I argued that it was likely that there would need to be legislation in the English jurisdiction to protect against genetic discrimination, as in the United States.

However, I think I had most fun in the ‘poster session’, for me on Friday afternoon. I had the unexpected pleasure of chatting with Karen Harrison Dening at my session, over the need for a network of national clinical nursing specialists. As it happens, Karen has just published a brilliant book on culture and dementia, which I strongly recommend.

Poster to print for Australia.ppt

Thanks hugely to Chris and Colin McDonnell (@ColinMcDonnell) in helping me enormously during the poster session, which I do find stressful every time (particularly when you have curled up posters so vehemently they have no chance of sticking onto the board!)

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This was for me the most interesting poster of the whole conference – on challenging behaviours, by Kate.

This blogpost explains its rationale in part. Even putting aside the general consensus that the dementias are under diagnosed in many jurisdictions, there’s a feeling that the recent scrutiny in dementia policy has overall helped.

I was particularly impressed by the research presented by Prof Martin Prince on behalf of his group at King’s College London. I think Prof Prince has a clear understanding of the critical assumptions of his work, as you would expect him to have. I had a long chat with him after his lecture. He struck me as a very sincere, thoughtful man, who was open to wider repercussions of his work. In particular, we shared a common interest in seeking accurate estimates for the global prevalence of younger onset dementia.

The beginning of the conference (@ADIConference), I felt, was very surreal but pretty magical. I don’t particularly like the word ‘indigineous’ as I feel Aborigines as it can further division and divide, and I feel that Aborigines have experienced a very bad deal culturally from others exerting racial and cultural imperialism.

Here, I feel some of us must show some solidarity.

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I personally bought a didgeridoo which I gifted to my mother on return (although I am mindful of the physiological limitations of the use of didgeridoo as a musical instrument by females). I was surprised to hear that didgeridoos (sic) are not permitted in hand luggage, however.

The conference itself was incredibly well organised. You can still access the book of abstracts for the conference here and wider information about the programme. I helped to review abstracts for the conference; I was indeed on the international advisory board for the conference, so reviewed abstracts for dementia friendly communities and younger onset dementia.

I am at the end of policy involved with living better with dementia, which includes advocacy across jurisdictions. I found an intense sense of hope and confidence from the conference, as opposed to the shock doctrine of Pharma which can be striking elsewhere in global policy on dementia.

The “vanguards” of dementia advocacy, globally, one may argue, are Kate Swaffer from Australia and Helga Rohra from Germany.

So it came to pass that we were all hugely proud when Kate Swaffer, Co-Chair of the Dementia Alliance International, a group consisting of people living with dementia, came to give her plenary.

I understand that videos of talks given by members of the Dementia Alliance International will be uploaded onto their website in due course.

Here’s for example Helga Rohra, Chair of the European Persons with Dementia, giving her plenary. I was deeply honoured to be name-checked in her talk. Helga is a friend, and someone whom I deeply respect.

(video from the DAI You Tube channel)

One of the plenary speakers was Al Power (@alpower12), Allen Power. Basically, I thought Al is terrific. I have now read his book “Dementia beyond disease”, which I feel is a groundbreaking reframing of the narrative towards treating people living with dementia as individuals with dignity, and how they should not be the target of pejorative language or assault through inappropriate medication.

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I have known of Mick Carmody for ages. Mick has been instrumental in ‘rallying the troops’. I anticipate that his enthusiasm and focus will lead to greater things in global advocacy.

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But I fell in love with Mick and his wife Sue from the moment I met them. They’d come from Brisbane, Queensland, and were hugely thrilled about participating in an international conference on dementia. Mick lives with dementia in Australia, and, it’s fair to say, had not been given sufficient or appropriate encouragement, pursuant to diagnosis. What changed the game for him was finding the Dementia Alliance International.

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I am a card carrying member of the club that individuals who’ve been given a diagnosis of dementia are all unique individuals with a huge amount of experiences, and it’s not what people cannot do, as with us all, but what people can do. Here are Helga Rohra and Chris Roberts, powerful Dementia Friends Champion ambassador for the United Kingdom, as described here in the popular Alzheimer’s Society magazine “Living with dementia”. DSC00226

Helga is simply larger than life, and I found many things Helga shared with me profoundly interesting.  Society has come a long way, but there’s still a long way to go. Helga, I suspect, speaks up for a vast army of people who’ve been given a diagnosis as part of a large social movement, expecting dignity, acknowledgement of human rights, expecting improved employment relations post diagnosis, and calling for holistic care.

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The #ADI2015 was simply triumphant for the Dementia Alliance International. I think part of this confidence has come from the new strategic alliance with the Alzheimer’s Disease International organisation, which has supported DAI, but gone to great lengths to preserve the autonomy of DAI. This brand new arrangement is described in a recent ADI “Global perspective” newsletter. Credit must be given to Kate Swaffer (@KateSwaffer) and Marc Wortmann (@marcwort), CEO of ADI, who, I feel, have been instrumental in making this vaguely possible. Thanks especially to Marc Wortmann for his kind remark about my (minimal) contribution to the #ADI2015.

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It’s dangerous to underestimate how Kate Swaffer has totally altered the terrain of attitudes towards dementia, in a positive way. Kate was diagnosed with the temporal variant of frontotemporal dementia, and the personal story is well described elsewhere.

I travelled around Australia after the conference too with Chris, and I hugely enjoyed meeting John Sandblom (@jball49), Treasurer of DAI. We all basically agree John is a top bloke! DSC00235

Here’s a picture of Chris Roberts, Mick Carmody and Sue Carmody having a look at the posters presenting the latest research into the dementias at #ADI2015. That #ADI2015 was successful in disseminating research to people living with dementia, comprising 10% of the delegates of the conference, I feel is a huge achievement. DSC_0089

I found Daniella Greenwood entirely focused on what the needs of the people with dementia in the care sector are. In the Australian jurisdiction, persons are called “consumers”. Parking this difference in terminology, the plenary given by Daniella emphasised the critical importance of relationships, and I feel this is to be broadly welcomed, in her analysis of ‘consumer directed care‘. DSC00210

Chris was often to be seen manning the DAI stall in between satellites and plenaries at the Conference. But the atmosphere there was “buzzing”. DSC00241

We did enjoy each other’s company. I’ve known @TruthfulKindnes (@truthfulkindnes) for ages, living with a constellation of dementia symptomatology in the United States.

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One of Tru’s list of achievements has been acting like a conduit for the creative expression of many people living with dementia. She specifically mentioned, for example, the experience of visual hallucinations. Visual hallucinations can be a predominant feature, for example, of the diffuse lewy Body type of dementia, an important cause of younger onset dementia, typically with a fluctuating way of symptoms appearing. DSC_0134

Having witnessed Tru’s desire to promote the work of people living with dementia, and her wish to use her gift in public speaking to inspire people, I know how important it was for Tru to make it from California to Australia to promote the experience of people living with dementia.

Tru has a true gift for speaking, with perfectly modulated speech and content.

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Finding this hope to encourage others is deeply meaningful. Here, for example, is Simone Willig’s film (@SWHerborn) of Helga speaking about music therapy.

This year there were some truly outstanding satellite symposia. One that springs to my mind was the one on employment and dementia. I contributed there on the need for a greater understanding of disability law by employers in terms of unfair dismissal and discrimination, consistent with Kate Swaffer’s talk there, and I urged the need for cognitive diversity in the approach from employers, resources permitting.

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Research was a key pervasive theme of the #ADI2015, which took as its title, ‘Cure, care and the lived experience’. There was a keen sense of learning from each other, across jurisdictions. Again, I thank Marc Wortmann for his lead in the workshop I attended where Chris Roberts gave a powerful overview of the lived experience.

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Canada, I felt, offered an useful steer in this workshop on research.

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It is a remarkable testament to the solidarity amongst people living with dementia and people close to them that there’s a huge interest in dementia research; but this is, as many us feel, not just about testing new drugs like guinea pigs but a genuine interest in research in care and living well with dementia. Otherwise, in policy terms, I feel that living better with dementia becomes the ‘squeezed middle’ between prevention and the optimistic search for the cure by 2025. CD7imBGUIAAKAV5

I was struck too by the inclusion of social media in this narrative. DSC_0109

When a diagnosis of dementia is disclosed to someone, quite sadly often in a substandard manner by professionals, there is a clear impact on friends and family. I found the contributions from Jayne Goodrick (@JayneGoodrick) and Kate Roberts, Chris’ daughter, sensational, in telling delegates actually what is happening in real life.

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Tru devoted a substantial part of her talk in outlining the importance of the DAI, as well as her “swiss cheese” model of dementia.

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Completely by accident, I happened to bump into Glenn Rees (@Glenn_Rees), now Chair of the ADI. Everyone who has been following world policy in dementia is aware of Glenn’s remarkable steer of Alzheimer’s Australia, where he has been instrumental in promoting consumer views; and this has had a profound impact internationally on a number of arms of policy, such as campaigning against physical restraint, and campaigning against the inappropriate use of antipsychotic medication.

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Chris, I felt, was a true gentleman, and very engaging as a person. I loved travelling with him in Australia, and with Jayne and Kate. Many happy emotions are brought up in thinking of what we got up to; including Chris’ use of the phrase, “That’s the kind of guy I am!

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And it was incredible to meet for the first time ‘imaginary friends’, quite safe really, such as Jac (@JacintaLynch), here in Adelaide sitting with Chris.

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I don’t drink alcohol. The reasons for this are well rehearsed.

But this did not stop me in any way loving the landscape of the environs of Adelaide Hills. Australia is of course well known for famous brand names in wine, and the Barossa Valley. It, ironically, took me a journey all the way to Australia to appreciate ‘black pudding’.

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The proof of the pudding was indeed in the eating.

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I learnt to trust the restaurant judgments of Kate Swaffer, a pretty mean chef herself (here’s her culinary blog).

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I don’t think Kate has the time to write a cookbook on top of her massive list of other commitments – but.. her work can be felt in remote areas too.

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And – seriously – I have never eaten such a perfect Thai curry ever (the lower dish): cooked by Kate.

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On a completely different matter, I learnt very many things in Australia; not least that kangaroos have big scrotums (sic).

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And that Chris can stand very close to emus, looking as if he’s in fact eyeing them up for dinner. One thing I certainly am thankful to Mick for is explaining how emus are bloody stupid creatures.

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I didn’t know what to expect from Sydney after the conference. But it turned out to be amazing – I spent time with “guess who” (Kate) and new found close friends Lynda Henderson (@yodsupporter) and Veda Meneghetti (@Veda_Meneghetti).

I have many happy memories of my time in Sydney – here are Veda (left) and Lynda (right).

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Veda is fast becoming a leading global ambassador for one of the lesser known of the temporal variants of frontotemporal dementia, the logopenic variant of progressive primary aphasia. She lives with it, and retains remarkable abilities from her life as a professional musician (aside: hence explaining the need for ‘life story’).

It’s yet again a case of what people can do.

Look at this – there’s no way I can sequence rhythms as well as this.

In fact, my supervisor from Cambridge, Prof John Hodges, who also shares a professorial position with Neuroscience Australia (@NeuraAustralia) happens to be one of the leading neurological authorities on this important condition.

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I was really impressed with my visit to see Prof Olivier Piguet, a mutual friend and colleagues of colleagues of mine, Prof John Hodges and Prof Facundo Manes. NeuRA, an innovative research hub in Australia, is something truly advancing the frontiers of cognitive neurology.

Whilst I did not have time to go to the Sydney Opera House (I think Kate has seen the iconic ‘Carmen’ there).. IMG_0316

I did have a very long chat with Prof Olivier Piguet. Olivier and I have the same strong interests in social cognition, the somatic marker hypothesis and the functions of the ventromedial prefrontal cortex, anticipation of future events, episodic memory and eating behaviours; the common link being the behavioural variant of frontotemporal dementia. This is of course what I specialised in for my PhD at Cambridge.

It is nice to be involved with promoting research in dementia, if only at a global level and not in this jurisdiction (England).

I am not, however, convinced that a US baseball cap is the best way to do this for me?

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I also discovered Olivier is much taller (and wittier!) than me! IMG_0342

Places like NeuRA do inspire me. They should inspire the rest of the global research community in cognitive neurology too. IMG_0360

And Veda, it turns out, was buzzing about the work of NeuRA. IMG_0366

Chris, it turned out, was amazing at throwing a spear as in Aboriginal culture. He did far better than the other visitors at Uluru, but of course it wasn’t a competition. When I delicately asked Chris how he came to be so proficient at throwing spears, he explained that he used to enjoy throwing javelin in school sports. So again it’s about what you can do – and I can’t throw a spear with my chronic double vision!

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Chris, a leading advocate for living with mixed vascular and Alzheimer’s disease, was pretty good at boomerangs too.

The landscape around Yulara Drive (and Uluru) was simply gorgeous. This per se of course is nothing to do with #ADI2015, but conveyed the flavour of hope and happiness that was present at #ADI2015.

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Chris, Jayne, Kate and I watched Ayers Rock change colour. Jayne in fact recorded a remarkable time lapse video of this. IMG_0420

Chris taught me how to take photos of people; consisting of 2 eyes and 1 ear. IMG_0427

Ayers Rock gave us plenty of time to think about the beauty of Australia. IMG_0447

But we had to ease our way back to the real world in a thud, albeit via a 4.5* hotel in Sydney near the international airport. IMG_0465

Currently, there is quite a lot of convergence in mutual research interests. Here for example is output from Alzheimer’s Australia taking as a spotlight prevention and social determinants of health (discussed in my new book).

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This was my old book ‘Living well with dementia‘ (from 2014), which I didn’t “flog” at #ADI2015 (though many were well aware of it, which humbled me.) The large poppy on the front is courtesy of, and photographed by, Charmaine Hardy (@charbhardy).

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I got Kate, Helga and Al to sign a copy of my book published last year – in a completely narcissistic way (I do apologise.)

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I myself met ‘virtual friends’, such as @JoanneAgnelli whose work on language and dementia is widely respected.

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My new book (“Living better with dementia”) is significantly more discursive than the last one, and should be published around 21 July 2015. Thanks very much to Jessica Kingsley for publishing it. It contains a chapter on whole person (integrated) care, which is due to reach a prominence, hopefully, after the UK’s general election on May 7th 2015.

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The ‘stub’ will give you a flavour of the topics I will cover.

“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”

And I think #ADI2015 has paved the way for this book (and my final one which will be on living at home and residential care settings in more progressed living with dementias.)

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Does combating stigma offend the 'rights based approach' in dementia?

Let’s for the sake of brevity keep the definition of ‘stigma’ short – but of course it has to be attempted in some way.

Stigma, according to the current Oxford English Dictionary is defined as follows firstly.

“A mark of disgrace associated with a particular circumstance, quality, or person:the stigma of mental disorder to be a non-reader carries a social stigma.”

One of the issues about human rights is that you can’t ‘pick and mix’ human rights. You have to take the full package. You can’t buy into some, and not the others. They apply to everyone however.

In vogue at the moment is a ‘rights based approach’, but, since mooting the issue, Daniella Greenwood (who is here at the ADI Conference 2015) voiced some concern it could encourage a checklist approach.

Checklists are essentially useful, I feel, as the information in them, and can provide inappropriate totality.

Like ‘person centred care’ (the phrase that is), the operationalisation and marketing can obfuscate the real sentiment.

For example, prior to the necessary legislation, racial discrimination was lawful in South Africa, so Gandhi was the ‘boat rocker’ to use modern NHS slang.

There was nothing on the checklist about racial discrimination so notionally it was not a legal issue.

Freedom of expression is a human right, article 10 in the English jurisdiction.

It immediately for many conjures up the famous saying,

“I do not agree with what you have to say, but I’ll defend to the death your right to say it.” ― Voltaire

Along with #JeSuisCharlie and other horrific incidents, there has been further scrutiny of the wider operation of this right.

Take for example this, “The Right To Offend? Mehdi Hasan Denies ‘Absolute Right’ To Freedom Of Speech”.

” Speaking opposite Times columnist David Aaronovitch at a HuffPost/Polis debate, on the right to offend, Mr Hasan argued free speech was being “fetishized” and claimed many free-speech campaigners in the west were guilty of “brazen hypocrisy.”

“How can you construct a civilised, cohesive society if we go round encouraging everyone to insult each other willy nilly? Yes we do have a right to offend but it’s not the same as having a duty to be offensive. You have a responsibility not to go out of your way to piss people off. I have the right to fart in a lift, but I don’t do it because it is offensive.

“Some people want the right to be offensive but then get cross when people are offended.” “

There are various ways in which ‘dementia’ has become medicalised, which has supported the power of the medical profession over others in discourses, arguably. In the 1960s, warehousing of people with problems with mental health meant that drugs could be easily delivered. “Living better with dementia” in the community would’ve have been unheard of.

When Robin Williams took his own life, and who had been diagnosed with a dementia, immediately the potential for media explosion was commenced.

This subject combined two taboos – “dementia” and “suicide”.

Take for example this Daily Mail article entitled, “Robin Williams’ suicide was triggered by hallucinations from a devastating form of dementia”.

The article soon reveals,

“Court documents obtained by TMZ reveal that Williams, who was found hanging from a belt at his home in California last August, was suffering from dementia with Lewy bodies.”

Whether someone ‘suffers from dementia’ has been revisited numerous times, and I don’t intend to  cover it here.

But the starting point, I feel, is that the stigma surrounding dementia goes a long way to explaining why people who have received a diagnosis of dementia don’t want to tell people about the diagnosis: sometimes called “coming out” with the diagnosis, to reflect perhaps a secret that could be hidden.

In response to Williams’ death, in the blog “Humanist Voices”, “Mental Illness: Stigma, Silence, Suicide — or Support?” Audrey in September 2014 had the following to say:

“Mental illness need not define a person as it often has in the past, but we have a long way to go to truly help those in need. Over the centuries, we as a society have ostracized, ridiculed, imprisoned, institutionalized, over-drugged, shamed, blamed, stigmatized and forgotten those who struggle with diseases of the mind. Quite unlike the history of physical ailments — which has had a distinctly different and more promising trajectory. Today we like to think we have a more enlightened view of mental illness, but countless people still fear the stigma of “coming out” with their mental health “issues” to peers and colleagues. How many among us try to hide our own struggles or those of our family members?

In the last half century society has moved away from overcrowded and often abusive mental institutions or asylums to a more humane community-based mental health approach. However, neither public funding nor insurance plans have ever provided the necessary support and resources to make such programs very effective. In fact, the lack of adequate community mental health services has given rise to jails and prisons becoming warehouses for the mentally ill in recent years. Even Minnesota faces a shortage of providers and hospital beds for those with serious mental illness as a recent legislative roundtable in west-central Minnesota revealed. And since William’s (sic) death, local media outlets such as Minnesota 2020 and MPR have been shining a light on the growing need for more mental health services across the state.”

So here we have one argument – that stigma is exacerbated by people not wanting to talk about their dementia diagnoses (“under expression”). Or, in the alternative, people feel bombarded with negative memes about dementia, e.g. “suffering”, “horrific”, “tsunami” or “time bomb”, in the general media. In any case, it can easily be argued that freedom of expression is a right that needs defending now as much as ever; it is therefore important to argue, say, freedom of expression “is the cornerstone of democracy, a vital foundation for tolerant societies.”. As this Amnesty International blogpost goes onto say, “According to the Committee to Protect Journalists, 61 journalists were killed last year in direct reprisals for their work. The most dangerous country was, unsurprisingly, Syria. Just over a week into 2015, and the CPJ’s figure is already at five. The most dangerous country? France.”

But is the content of the media something we should take some notice of?

Yes – for a start the ADI Conference has language guidelines.

According to Miriam Bar-on (2000), in the USA, ” based on surveys of what children watch, the average child annually sees about 12 000 violent acts,5 14 000 sexual references and innuendos,6 and 20 000 advertisements.”

Television has the potential to generate both positive and negative effects. It turns out that an individual child’s developmental level is a critical factor in determining whether the medium will have positive or negative effects.  Current literature suggests that perhaps physicians can change and improve children’s television viewing habits, or even excessive television watching contributes to the increased incidence of childhood obesity?

And interpretation of language is not new.

According to the Stanford Encyclopaedia of Philosophy, “Hermeneutics” is defined as follows:-

“The term hermeneutics covers both the first order art and the second order theory of understanding and interpretation of linguistic and non-linguistic expressions. As a theory of interpretation, the hermeneutic tradition stretches all the way back to ancient Greek philosophy. In the course of the Middle Ages and the Renaissance, hermeneutics emerges as a crucial branch of Biblical studies. Later on, it comes to include the study of ancient and classic cultures.”

Kate Swaffer, Co-Chair of the Dementia Alliance International and living with a dementia, argued this recently in Dementia Journal in an outstanding paper.

“It is therefore imperative that we aspire to change views of and about people with dementia, and begin to include them in the research and conversations about them. [Ken] Clasper (2014) writes a blog about living with dementia, and said: ‘…we wish to raise awareness of dementia, is that we all live on hope, that we can in our own little way go a long way to remove the stigma which we hear of every day in dementia’.”

So this is a case of ameliorating under-expresssion of information, consistent with the notion that prejudice and discrimination arise from lack of information and/or ‘lack of changing your mind’ when presented with new information.

And Kate explains, why despite Voltaire, it is in fact a big deal to be offended,

 “Whilst, we may have changed, we are all there. Whilst we may in fact suffer, many of us are not sufferers, and find that term offensive. We no longer refer to people with physical or intellectual disabilities as retarded or as retards, as it is offensive to them, even though technically they [we] are retarded. I place myself in the disabled category, as I have many disabilities caused by the type of dementia I have. Technically, people with dementia are ‘demented’ too; however, most of us find that and other terms offensive, and have a right to stand up and speak out about it.”

I have seen with my own eyes how the medical profession culturally in an institutionalised way harbour anti-dementia memes like “demented” when talking with other doctors. I’ve been on ward rounds where the Consultant has turned to junior medical staff, with the person with advanced dementia waiting to be discharged after an operation, and said, “But don’t worry about him as he’s got dementia”.

We have furthermore to be extremely careful or vigilant that the global policy of “dementia friendly communities” does not promote a sense of ‘otherness’, defeating the prime objective of inclusive.

Swaffer (2014) warns:

“The determination by governments and Alzheimer’s societies and organizations around the world to promote dementia friendly communities and dementia champions still mostly supports the ‘about them, with them’ position, which has the potential to further stigmatize people with dementia. To date, only a few people with dementia have been included in the discussions, planning and decisions about what makes a community or organization dementia friendly.”

But there’s little doubt in my mind that dementia friendly communities is a valuable concept, even if the nosology isn’t quite right?

Danielle White from Alzheimer’s Australia NSW hopes that “understanding of the condition will turn into action”, a similar if not identical to the sentiment behind the UK’s “Dementia Friends” initiative.

She has said: “These figures show why it’s so important for us all to look at how we can create communities where people living with dementia are included, respected, valued, and supported to maintain a good quality of life.”

In a paper entitled, “Dementia Discourse: From Imposed Suffering to Knowing Other-Wise”. Gail J. Mitchell, Sherry L. Dupuis, and Pia C. Kontos, this intriguing diagram pops up on page 12 which I felt was a useful summary infogram about the ecosystem of a stigma.

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Venance Dey has said that, “awareness about the disease was almost non-existent in Ghanaian communities hence the formation of the AG to raise awareness about dementia in local communities that would encourage government to build systems for all those affected to have access to quality care and support they needed.”

But we should care about the age at which stigma memes might get implanted.

Psychologist Dr Jess Baker has for example in Sydney’s west observed a group of Scouts watching DVDs about dementia.  The video forum is part of a UNSW-led project that aims to create a more dementia-friendly society by educating the next generation. Information gleaned from the children will be used to develop an online education program, designed to align with Australia’s education curriculum.

.“We know that children are more responsive than adults to anti-stigma education because their beliefs are not as firmly developed,” according to Dr Jess Baker.

But the impact of mass media and popular culture should not be underestimated. A group of 11–14 year olds interviewed for a British dementia study made repeated references to the “dementors” in the Harry Potter movie series – half-dead creatures that feed on happy thoughts and memories leaving their victims in a mindless state.

According to Wikipedia,

“Rowling, by her own account, created the dementors after a time in which she, in her own words, “was clinically depressed”. Dementors can therefore be viewed as a metaphor for depression.”

First problem – the confusion between depression and dementia. Indeed, some depression might get confused as dementia (or vice versa); but there is a co-morbidity between depression and dementia.

“Despite their attachment to human emotion, dementors seem to have difficulty distinguishing one human from another, as demonstrated by Barty Crouch Jr.’s escape from Azkaban, wherein they could detect no emotional difference between the younger Crouch and his mother.”

Having abnormal emotional responses can be a feature of the frontotemporal dementias. Indeed, Prof John Hodges from NeuRA and Prof Simon Baron-Cohen have both been very interested in how the neural circuitry involved in reading others’ minds might go awry in behavioural variant frontotemporal dementia.

“The dementors are “soulless creatures… among the foulest beings on Earth”: a phantom species who, as their name suggests, gradually deprive human minds of happiness and intelligence. They are the guards of the wizard prison, Azkaban, until after the return of antagonist Lord Voldemort.”

source Melissa (30 July 2007). “J.K. Rowling Web Chat Transcript – The Leaky Cauldron”. The-leaky-cauldron.org.

In popular culture, dementia is often portrayed as robbing people of their happiness.

“The presence of a dementor makes the surrounding atmosphere grow cold and dark, and the effects are cumulative with the number of dementors present. The culmination of their power is the ‘Dementor’s Kiss’, wherein the dementor latches its mouth onto a victim’s lips and consumes its soul or psyche, presumably to leave the victim in a vegetative state.”

And of course there are people like me who feel that your “Self” is not “robbed away from you” during dementia.

And finally,

“Beneath the cloak, dementors are eyeless, and the only feature of note is the perpetually indrawn breath, by which they consume the emotions and good memories of human beings, forcing the victim to relive its worst memories alone.”

Emotional regulation is affected quite late on in Alzheimer’s disease because of the usual time path of the condition, but the analogy of which memories are “robbed first” does not even correspond to actual life – in actual life, in the dementia of the Alzheimer’s type, recent memories go much earlier than later memories (the “so called temporal gradient”), and in fact worst memories might be emotionally charged such that they’re actually very vivid (a similar phenomenon happens with the effect of the stress hormone cortisol on memory formation.)

If we ‘go’ with the “rights based approach”, it’s pretty likely we’ll have to take ‘the full package’, which includes freedom of expression conversing with a person with dementia but also a freedom of expression of a person with dementia. Except…. there’s a catch here. If somebody’s acting badly with a person with dementia, it might be ‘freedom of expression’. If the person with dementia dares to say something back, it ends up being ‘agitation’, ‘aggression’ or ‘challenging behaviour’.

It essentially is a finely balanced deck of cards, where it just takes one thing to make the whole thing come crashing down.

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Reading

Bar-on, M.E. (2000) The effects of television on child health: implications and recommendations,  Arch Dis Child 2000;83:289-292 doi:10.1136/adc.83.4.289.

Swaffer, K. (2014) Dementia: Stigma, Language, and Dementia-friendly Dementia 2014 13: 709

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