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Human rights in dementia. The only way is Kyoto.

It wasn’t that long ago that many people, after receiving a diagnosis of dementia, would be propelled head-first into an abyss of the health and social care systems, with no supportive ‘dementia friendly communities’.

As leading international campaigner Kate Swaffer provided in a talk in 2016, people beyond a diagnosis of dementia “are not provided with rehabilitation or other enabling post diagnostic support” and “are not provided with the same disAbility support as every other person with a disability”. It is widely recognised that people living with dementia are frequently denied their human rights both in the community and in care homes.

What I feel is the power in dementia is not as such the nebular notion of dementia, but that individuals with distinct lives of their own have rights. As Chris Roberts, also living beyond dementia, said this morning in Kyoto, “People with dementia have their rights trampled on – these are not just rights relating to their disability, but also their human rights”.

The back story is as follows.

The WHO International Classification of Functioning, Disability and Health (ICF) defined disability as ‘an umbrella term for impairments, activity limitations and participation restrictions’ (WHO, 2002, p. 2), referring to the negative aspects of the interaction between an individual with a health condition and that individual’s contextual factors (environmental and personal factors).

According to Article 1 of the UN Convention on Rights of Persons with Disabilities (UNCRPD):

“Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”

In UK law, the Equality Act [2010] states that a person (P) has a disability if:
 (a) P has a physical or mental impairment, and
(b) the impairment has a substantial and long-term adverse effect on P’s ability to carry out normal day-to-day activities.

The term ‘disability’ is therefore not meant merely stigmatising label to be imposed upon individuals. Nor is the term ‘disability’ in this context intended to focus on what a person can’t do, but rather the wider societal context in which a person with a disability lives their life and what they can do. This is significant as the act of the diagnosis of dementia not in itself be profoundly disempowering.

National laws and policies (e.g. mental capacity legislation, health and social care services, dementia-friendly communities, etc.) must be compliant with human rights legislation – disability rights are therefore potentially powerful levers for change.

Dementia Alliance International (DAI) is an advocacy group, the peak body and global voice of people with dementia. Their mission particularly includes Human Rights based approaches that are applied to the pre and post-diagnostic experiences of people with a dementia, in every way. This unique group advocates for a more ethical pathway of support that includes their fundamental  human right to full rehabilitation and full inclusion in civil society; “nothing about us, without all of us.”

I’ve found their pamphlet ‘The Human Rights of People Living with Dementia – from Rhetoric to Reality’ very helpful.

There’s been a huge amount of work about why the label of dementia can bring with it negative stereotypes and pre-conceptions. The literature since the seminal work of Becker in the early 1960s is now substantial into the field of “stigma”Stigma can be a contributing factor for why people with dementia do not claim their rights.

Owen Miller wrote originally as part of the Scottish Council for Voluntary Organisations (SCVO) #RightApproach campaign, the following.

“But too often people with dementia find their rights restricted by the stigma which often surrounds their condition. Assumptions are made about a person’s capacity to make decisions. Risk-aversion becomes standard practice. Attention turns to what a person cannot do rather than what they can. Often this comes about as a result of circumstances in which well-meaning attempts are made to protect the person from harm or do what is perceived to be in their best interests. However, it is often the case that doing so fundamentally fails to respect the person as someone with unique experiences, interests and abilities, who can still actively and meaningfully engage with their community.”

Kate Swaffer, Chair and CEO of DAI, was the first to use the term “Prescribed Disengagement®” to characterise the advice that she received to “give up work, give up study, go home and live for the time you’ve got left”. Her husband was told he would soon have to give up work to care for her.

Many people with dementia report a common experience of loneliness and social isolation which they experience when friends and family members stop visiting, Older people are more fearful of developing dementia than they are of cancer, a poll recently suggested. Two thirds of people over the age of 50 fear that they will develop the condition, while just one in 10 said they were frightened about getting cancer.

The 161 countries that have ratified the CRPD are required to submit regular reports to the UN CRPD Committee. Non-Governmental Organisations (NGOs) and Disabled Persons Organisationshave the right to submit ‘parallel reports’ which are taken into consideration in the Committee’s Concluding Observations and Recommendations. All of the articles are significant, but it is especially noteworthy that a right to legal capacity on an equal basis was enumerated in the CRPD in Article 12 as a subsidiary to the right to equal recognition before the law.

An accessible Users Guide to the Convention is here.

In March 2015, Kate Swaffer made three demands at WHO’s First Ministerial Conference on Dementia:

  • Policy and practice for people living with dementia should be based on the CRPD
  • Research should focus as much on care and support as on cure
  • A more ethical pathway of care, including pre and post-diagnostic support from a wide range of rehabilitation professionals in the community

It was further reported that, at the Alzheimer’s Disease International conference’s international conference in April 2016, the leaders of 38 national Alzheimer Associations committed to a human rights based policy and full access to CRPD.

Prof Peter Mittler CBE in August 2016 noted:

“But people living with dementia are at great risk of being left behind in the sustainable development groups because there is a pervasive assumption that dementia is the sole responsibility of Health ministries, rather than the inter-sectoral responsibility of all Ministries, including Housing, Transport, Social Care and Protection. These would enable us to have access to the whole range of supports, services and amenities available to persons with disabilities recommended in CRPD.”

The human rights based approach (HRBA) is important.

HRBA is based on participation of people with lived experience, as with the disability rights movement’s motto ‘nothing about us without us’. Yet there is a shocking lack of consultation with people with dementia throughout much of dementia care. It was recently found the quality of dementia care in OECD countries is very poor.

Rights pop in various contexts.

For example:

  1. In many countries people living with dementia are often physically and chemically restrained, even when regulations are in place to uphold their rights. Furthermore, people living with dementia can also be victims of neglect and abuse.
  2. More recently the broader concept of advance care planning (ACP), a multi-stage process whereby a patient and their carers achieve a shared understanding of their goals and preferences for future care, has been introduced. Evidence shows that one to one discussions with a trained professional over a period of time are the most successful. ACP may thus provide an opportunity for more person-centred care, although such discussions should occur while the person still has capacity.
  3. Sexual self-determination is considered a fundamental human right by most of us living in Western societies. Conduct follows strict rules relating to consent and coercion, but for older people with dementia living in residential aged care facilities, however, the issue becomes more complex. But it is hard to deny a wish for people to form loving relationships, and this is bound to happen too in the context of residential care. We are at danger of treating all relationships which occur in residential care with suspicion until proven otherwise. This arguably offends inalienable, universal human rights and a right to democratic citizenship.
  4. Article 8 of the European Convention on Human Rights concerns the right to family and private life. This includes the right to respect for an individual’s home and correspondence. The right contained in Article 8 is known as a qualified right which means that there may be circumstances in which some interference with it is justifiable. This right means that an individual has the right to the level of personal privacy which is compatible with a democratic society, taking into account the equivalent rights and freedoms of others. Any interference with this right by a public authority, such as CCTV video surveillance, may be subject to a test of acceptability. This might also clash with the so-called “deprivation of liberty safeguards”, where somebody with dementia might have his liberty taken away by the State.

There’s no doubt that human rights are a big deal, and I have no doubt that the WHO/UN Sustainable development groups/human rights approach will become enshrined within the new vocabulary of dementia friendly societies or age friendly cities in time.

@dr_shibley

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‘Dementia friendly communities’ – are you “luvving it”?

There is no universally accepted description of international marketing.

The American Marketing Association defines it as “the multi-national process of planning and executing the conception, prices, promotion and distribution of ideal goods and services to create exchanges that satisfy the individual and organisational objectives.”  Unless we’re careful, the corporatisation of dementia friendly communities will mean that this policy takes a turn for the worst.

The notion of ‘dementia friendly communities’ has a long and distinguished history. The concept of the Alzheimer Café was established in the Netherlands as a vehicle for providing a welcoming atmosphere in an accessible location for all people with or affected by dementia. The first Alzheimer Café took place in 1997 in a collaboration between Dr Bère Miesen and the regional branch of Alzheimer Nederland in north Zuid-Holland. There are now 230 Alzheimer Cafés run by volunteers in the Netherlands with around 35,000 unique visitors each year.

In #ADI2015, Kate Swaffer, world leader living beyond dementia, said pretty emphatically in a talk on ‘dementia friendly communities’ “It’s about our basic human rights.”

Kate at the time said that “people without dementia cannot really know what it means to live with dementia”, and I completely agree. When Donald Trump was surrounded by about ten men signing an executive order on abortion rights, the world was aghast.

There’s been a huge amount of preparatory work on what ‘dementia friendly communities’ might include, and the genuinely global examples all around the world cited in this ADI report are very interesting.

There have been some remarkable achievements.

Look at Dennis Frost, a member of Dementia Alliance International and also the Inaugural Chair of the Southern Dementia Advisory Group in Kiama NSW, which guides the DFC pilot project between the Kiama Council, University of Wollongong and which [Alzheimer;s Australia were also involved in nationally. Many consider this to be the gold standard dementia friendly communities project globally.]

“Two local groups were then formed to establish
a Kiama Dementia Action Plan: the Dementia Alliance, made up of people with dementia, carers, the local council, and service providers; and the Dementia Advisory Group, formed solely of people with dementia and carers. Information sessions for local groups and the public have taken place, the Kiama Community College is working towards becoming dementia friendly, local newspapers have published positive stories about local people with dementia, and the project is showcased online. Kiama is seeing improved community awareness about dementia and training has been provided to help community groups such as the local Probus club, choir, music and knitting groups support people living with dementia to participate/ remain involved with their groups.”

(ADI report)

There’s no doubt that ‘dementia friendly communities’ as a marketing brand is very difficult to disagree with. After all, as Kate pointed out in 2015, a definition of “friendly” is “favorably disposed; not antagonistic”. The work builds on WHO “AGE friendly cities” – and you can see from this checklist that many of the aims overlap with dementia friendly communities, though there are obvious differences (e.g. city vs rural community).

I think as the worldwide narrative on human rights for dementia becomes more fine-tuned later this year, through the groundbreaking work of Alzheimer’s Disease International and Dementia Alliance International, it is reasonable to take stock of what ‘friendly’ means, other than not being overtly antagonistic.

Kate at the time mentioned ‘respect’, ‘inclusion’, ‘equality’, and ‘autonomy’, and these are of course essentially the human rights based approaches (take for example the PANEL principles of ‘participation’, ‘accountability’, ‘non-discrimination’, ‘empowerment’ and ‘legality’).

As Glenn Rees, ADI chair, said in a recent speech:

“A lot has happened in the last two or three years in other countries in implementing dementia friendly communities. The principal message of this publication is that there is no right or wrong way to make communities dementia friendly, though projects will fail if they are not inclusive of people with dementia.”

Unless there is a genuine cultural shift in priorities, there’ll be a perpetual sense of ‘groundhog day’ in this. Only today, the UK government were requested to lead the way in improving access to buildings for disabled people, according to a new report. The document, Building for Equality: Disability and the Built Environment, published by the Women and Equalities Committee, highlights the challenges facing disabled people in accessing homes, public spaces and other buildings. It recommends that the government should develop a cross-departmental strategy bringing together all built environment policy affecting accessibility.

Whatever your view about ‘dementia friendly communities’, I feel that it is a dangerous mentality which has emerged that such communities need to be ‘commissioned’ and somehow overseen by a ‘provider’. I have known some excellent local initiatives to have been totally annihilated by not having the ‘appropriate’ backing. This has to cause alarm for anyone who is interested in equity. And it does rather beg the question of whether ‘dementia friendly communities’ have become too much of a brand, with slick marketing?

Take, for example, the notion that ‘dementia friendly communities’ should align to a certain specification or standards. Intuitively, this makes sense for streamlining the efficiency of the production of a dementia friendly communities, but dementia friendly communities are not BigMacs – i.e. the same product whether in Dublin or Dubai. With the rest of the world entrenched in austerity, it is curious that bits of the third sector should somehow consider themselves immune from financial pressures. What would have been helpful was whether the introduction of standards would unnecessarily cost money for what ideally should be organic initiatives led by persons living beyond a diagnosis of dementia. Also, whether the standards basically only benefited big business in some weird neoliberal ‘survival of the fitness’ by imposing a level of top level management where only the financially fittest could survive.

I disagree fundamentally with the assumption made so easily in conferences and commissioning pitches that ‘Dementia Friends’ is a social movement. I think any process where you can become a ‘Dementia Friend’ by clicktivism merits scrutiny. There’s no doubt that ‘Dementia Friends’ has had a formidable up-front investment, and the results of the quality monitoring of this unbelievably are still in development. ‘Dementia Friends’ is a brand. If you object to my characterisation of this, feel free to look at the number of diverse intellectual property classes it is registered for.

For example https://www.ipo.gov.uk/tmcase/Results/1/UK00002640312

Examples of classes

The product in ‘Dementia Friends’, a script delivered verbatim by many volunteers, a script so rigid and intransigent that you should not depart from it even if you happen to be a dementia academic or practitioner, is so homogenous  that I really feel it cannot even with the most generous will in the world be called ‘a social movement’. If you have private interests in dementia research or the collapse in social care (mitigating against the delivery of high quality dementia friendly communities), as a dementia friends ‘champion’, you are best parking them at the front door. Again: not a social movement.

But I do not wish to give a biased one sided view of Dementia Friends.

It was a highly effective programme for mitigating against the stigma and prejudice faced by dementia (though it is worth noting that five years after its introduction the English newspapers are still stuffed full of headlines about ‘dementia sufferers’ or ‘dementia victims’.) As a brand, across different jurisdictions, it has the promise to be cost-effective due to ‘economies of scale’, and well rehearsed marketing channels (possibly due to good relationships between large multinational dementia charities).
As a product, it is highly visible with good brand identity.

That’s the selling BigMacs in different continents without needing to change the product bit of the blogpost. But we know that there are huge cultural differences in perception of living beyond dementia and caregiving, as well as formidable socio-economic differences. So the argument runs that the homogeneous international marketing of a particular brand of ‘dementia friendliness’ runs the risk of squashing diversity and innovation, and at the very worst is a horrible form of cultural imperialism imposing one nation’s cultural views about dementia.

Global image of the brand can be effectively reinforced via the application of standardisation to integrated marketing communication strategy. The slogan of a global sports clothing company Nike, ‘Just Do It’ can be mentioned to justify this argument. This slogan effectively communicates the same marketing message and promotes the same lifestyles in the global scale, and so far Nike has immensely benefited from this strategy in terms of profit maximisation.

Nike

However, one wonders whether larger providers in the third sector are really the best people alone to build ‘dementia friendly communities’. If one is not careful, corporate and regulatory capture can both rear their ugly heads. Corporate capture refers to the means by which an economic elite undermine the realisation of human rights and the environment by exerting undue influence over domestic and international decision-makers and public institutions. Regulatory capture is a form of government failure that occurs when a regulatory agency, created to act in the public interest, instead advances the commercial or political concerns of special interest groups that dominate the industry or sector it is charged with regulating.

In international marketing, the “adaptation strategy” implies changing various aspects of products and services to a considerable extent in order to meet the needs of consumers in international markets taking into account their differences. Adaptation strategy offers advantages of meeting differences of local markets at various levels, and in this way achieving greater levels of customer satisfaction. But here it is worth noting why the language is in itself objectionable – people living beyond a diagnosis of dementia and their care partners are citizens, not merely consumers to be sold an ever increasing number of products in a ‘dementia friendly way’.

So Glenn for me absolutely hits the nail on the head for me in his speech for the 19th Asia Pacific conference:

“Across the world the concept of dementia friendly communities is being given practical expression in four different ways by;

  1. Being inclusive and supporting and protecting the rights of a person with dementia.
  2. Tackling stigma and lack of community understanding of dementia.
  3. Increasing the capability of the health and care workforce and availability of 
key services.
  4. Improving the physical environment – a topic that is central to the ageing cities 
movement.

.There is no one size fits all in designing dementia friendly communities. But to be successful there are some key steps. 
First, to involve people with dementia as equal partners. Second, to determine what action is needed. 
Third, to ask people with dementia and other stakeholders if they consider their community to be dementia friendly. And if not, why not. 
Fourth, to form local dementia alliances involving businesses, local government, service agencies, medical services and hospitals. This may help attract funds for the project and a project officer.”

One way of avoiding the big corporatisation of dementia friendly communities is to support the organic initiatives which do not attract as much funding. The work of ‘Dementia Alliance International’ is particularly recommendable as it works closely with Alzheimer’s Disease International on the formation of global policy, including the application of the United Nations Convention on Rights of Persons with Disabilities’ and dementia.

Dementia Alliance International (here) is a registered non-profit organisation whose membership is exclusively for people with a medically confirmed diagnosis of any type of a dementia from all around the world . They seek to represent, support, and educate others living with the disease, and the wider dementia community. They are an organization that strives to provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

As they themselves say:

“Our work on claiming the Human Rights for all people with dementia means we are legally entitled to be included, and not just consulted, or represented by others. We are also entitled to the appropriate disability support that any other persons or groups of disabled people are afforded.”

 

That is surely where the discussion of ‘dementia friendly communities’ MUST start?

Enjoy #ADI2017.

 

 

@dr_shibley

 

 

 

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What would happen if there were no medical treatment options for dementia?

Currently, what will get physicians or psychiatrists grabbing for the prescription pad in dementia for a person living with dementia might be a need to prescribe a drug to produce a modest improvement in thinking, or a sub-domain of thinking such as memory. There’s been a drive, particularly since the famous report by Prof Sube Banerjee in 2009, to reduce the volume of inappropriate antipsychotic prescriptions. These antipsychotics were sometimes given inappropriately as a disproportionate chemical form of restraint, thus offending human rights, where other options might have been more suitable (for example finding out that a person with dementia had a treatable source of pain which could be treated appropriately.)

Whilst there’s a lot of hype to do with ‘change’, some of it unhelpful, some of the work in change is very helpful. I came across, via tweet from Helen Bevan, a very interesting activity called “BANNED“, from the Patient Safety and Quality Control Council.

I’d be very interested to hear of responses to this activity for the specific scenario where a clinical practitioner is unable to recommend or prescribe ANY medication for dementia. In the case of cognitive enhancers, these can have modest effect anyway (though it is worth noting for some the effect is significant and substantial).

I have therefore reproduced the activity instruction sheet accordingly.

“Sometimes turning your thinking on its head can be the best thing to do when trying to generate new ideas and solutions to old problems. The banned exercise gets you to create future scenarios based on imagining a world in which a product, service or experience no longer exists. It explores how people might adapt in this situation to generate new ideas and creative solutions.

You’ll need

  • 30 minutes
  • Groups of 6-8
  • Flipchart paper for storyboards
  • Marker pens

What to do

Decide on a scenario to investigate. For example, a world in which there is no medical treatment for dementia, for example there are no cholinesterase inhibitors or antipsychotics.
Determine time and scope for the scenario. For example, we begin when the person with dementia and care partner enter the room, with the person with dementia having been newly diagnosed with dementia.
Identify stakeholders. For example, patients, nurses, physiotherapists, occupational therapists, care aids, physicians, etc.
Create a storyboard by drawing your scenario. How would you adapt in your new world in which there were no medical treatment options for dementia? You might recommend memory aids or smartphone apps. Try to generate as many adaptations as possible.
Analyse the scenario through discussion. Explore your adaptations and how they might be put into practice.
Summarise insights. Discuss your adaptations and people’s reactions to them. Are any possible to test or implement?

Debrief

  • What did it feel like to imagine a world where medical treatment option no longer existed?
  • Were you surprised by the ideas that you were able to generate?
  • How could you apply this learning/experience in your work?”

 

@dr_shibley

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Is there enough competition in the “dementia conference industry”?

It’s exactly the same list of CBE speakers who are now on the programme of the latest dementia industry conference as the previous programmes in 2012, 2013, 2014, 2015 and 2016 (except a few years when these people were merely CEOs they were not CBEs then).

This perhaps raises an interesting question is: that is, does the consumer have enough choice between dementia charities and regulators in England?

One can predict the need for the regulator to update their regulation techniques, so that care homes which were rated ‘outstanding’ one day do not appear as the next Winterbourne the following day. (The overzealous reliance on regulation, rather than performance management, was also seen in heady days of the global financial crash where Lehman Brothers were given the top financial status one day but declared bankrupt the following day.)

For all the talk of “challenger banks” in the banking industry, the fact is new smaller banks are rarely successful in entering an industry dominated by a few giants. The result? That your bank will charge you the earth for unauthorised overdraft transactions when your bank attempts a transaction with no funds. This is merely the same as your inbox trying to accept a new email when you have reached your inbox limit.

When businesses have insufficient competition, they are prone to unconscionable practices. The way to get round these barriers to competition is to maximise harmonisation and interoperability – that’s why uniform methods of payment and initiation and account management electronically between banking providers can be actively promoted due to the new EU Payment Services Directive (PSD II). It is now my contention that we similarly have a dementia industry out of control, with some of the key players too big to fail whatever they do.

We see exactly the same unhealthy private market in conference organisers. It is rare for new speakers to break into the speaker circuit, despite there being a wealth of expertise in a range of different backgrounds. For example, you’re much more likely to hear of the latest failed big budget project from a large charity than an organic project with barely any funds from a stakeholder group of people with dementia. This is much to the detriment of moving things genuinely foreword in dementia care and practice.

This is not in the interest of anyone. When Deloitte did their famous report on thought diversity, it was argued that diversity in thoughts and opinions was exactly what you needed to avoid over-reliance on certain failed ideas from people prone to groupthink. This can mitigate against vulnerability to market shocks, and build up resilience.

By this virtue, there is absolutely no reason for ‘Dementia Friends’ to be run by a single charity amassing millions of new customers seemingly in perpetuity, as a result of multi-million pound marketing through a Government assisted initiative. This homogenisation of provision about dementia information provision results from an overzealous scripting of information sessions which  is intransigent and inflexible, and does not encourage any divergence from groupthink or innovation. It simply encourages intense marketing and branding by one charity which is blatantly uncompetitive, and I am deeply worried about the damaging impact this has on the rest of the dementia “local economies”. The mass-marketed “Dementia Friends” cannot even with the greatest generosity in the world be considered a ‘social movement’ – call what it is, please, thrat it is a highly effective mass marketing exercise akin to selling BigMacs around the world.

In English dementia policy, people like me are trying to encourage people with dementia to focus and work on what they can do, rather than what they cannot do. This is also known as an assets or strengths approach to healthcare, and is fundamentally important as a narrative solely based on deficits and impairments can be profoundly demoralising. Indeed, I made this a blatant theme of my first book, which won best book of the year award for the BMJ Books in 2015 in health and socIal care; this book was called “Living well with dementia: the importance of the person and the environment” (CRC Press, 2014).

C8jGqmHXsAA6lXU

But there is a very serious problem as a result of groupthink, lack of competition and, at worse, a sense of collective corporate arrogance – that is, mistakes can easily be made.

Take for example the lack of ‘caring well’ in the NHS England ‘Living well with dementia’ Transformation Network.

dementia-well-pathway

Whoever thought of a policy on dementia which airbrushes and expunges out ‘caring well‘ – e.g. clinical specialist nurses, respite care, domiciliary care, social care – even in the ideological drive for a small state cure-reliant approach, I feel, should be frankly ashamed of themselves. And it’s soul-destroying to see this substandard piece of work being pedalled at expensive conferences.

I spent 9 months out last year unpaid, and researched for myself the current state of play in domestic and international standards in integrated dementia care – and yes, some of it is not what you hear heavily marketed in big conferences, and is available for a mere fraction (up to tenth) of the price! It has received excellent reviews from other experts in the field, for which I am grateful.

I wrote 3 books in 3 years, completely pro bono, this way. It was intensely fulfilling to be able to contribute in my own way.

C8XQbDrXYAAFTj3.jpg-large

I strongly feel that we need international solidarity, away from financial vested interests, for people living with dementia to be genuinely enabled through instruments such as the United Nations Convention on Rights for People with Disabilities, as dementia is legally a disability. People with dementia don’t necessarily ‘need permission’ from others, such as large corporate charities. I feel words such as ’empowerment’ and ‘engagement’ are terms of inappropriate aggrandisement – I know as a carer that all I want is some space, time, and real practical help.

If indeed dementia ‘never travels alone’, why do clinical specialist nurses get such a raw deal in policy in dementia compared to in cancer (e.g. Marie Curie nurses or MacMillan nurses)? The hallmark of dementia is complexity and co-morbidity; it is very unlikely for you to find a person living with dementia living with no other physical or mental health condition. It is thus imperative we have adequate care planning, continuity of care, workforce training and caring for the carers in the English offering for ‘caring well’ – i.e. through Admiral Nurses. And to give her credit, the Chief Admiral Nurse of Dementia UK is superb, Hilda Hayo.

C8HdORHW0AAwJh4

I believe that you can learn a lot about dementia from people with the CBEs or with big cheque books at big conferences, but they are not the only source of useful information.

You do need to hear the other voices, often people living with dementia and care partners not in professional ‘engagement groups’ AND ALSO the voices of grassroots professionals and practitioners who have been dealing with this day in day out for decades but who rarely have time or resources to attend thee conferences, to get practical help.

But I don’t think that with the near monopolistic behaviour of certain players we are getting proper ‘coverage’ in policy of other aspects which can make a real difference to people’s lives.

 

C9M-BnaW0AI46nw.jpg-large

Big conferences are great fun – but only part of the story.

 

@dr_shibley

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A heart-felt plea: let’s move dementia policy forwards not backwards?

The most depressing thing about seeing exactly the same line-up of has-been speakers delivering the same pitches about dementia as in 2016, 2015, 2014, 2013 and 2012 is not simply a relentless feeling of ‘Groundhog Day’.

It is my genuine concern that we are trapped in a time warp, and that we haven’t taken things much forward since 2012, the David Cameron Dementia Challenge, the year coincidentally there was bonfire of the legal aid centres. So much for dementia rights then?

It could have been up to the Care Quality Commission to police ‘dementia rights’ in absence of the bonfire of legal aid? What are offences of privacy, degrading treatment, right to private and family life or deprivation of liberty if they are not fundamental human rights abuses?

There are some exceptions to my general rant, however, which I feel merit attention.

Take for example my book launch event held in February 2017, for my third book on dementia: “Enhancing health and wellbeing in dementia: a person-centred integrated care approach”. I suggest you don’t listen to the whole event, all 2.5 hours of it, although it is very good. We embraced the novel concept of having new speakers talking about new things not charging an entrance fee.

It’s definitely worth listening to Reinhard Guss, highly knowledgeable chair of many things but a brilliant speaker in view on psychological approaches to dementia. Also worth listening to is Lucy Frost, who gave an insightful view of what it’s like to work in the NHS ‘in real life’ in dementia care.

Like it or not, there have been advances from Apple, Google and Amazon in voice-recognition assistive technology devices? In an outstanding presentation by Maneesh Juneja, Maneesh considers what impact these devices might have on supporting dementia care. Maneesh is a relatively lone voice in coming to this subject not on any commission, so is well worth listening to.

groupTerrific afternoonDiscReinhardGina 1Nicky RipaljeethahaLisa Kate and Marian

I think it is difficult to keep on milking the cow that is Dementia Friends. I don’t wish to see people being seen to learn about dementia turn into some giant experiment in clicktivism – it’s not good enough to count as a ‘dementia friend’ somebody who has spent minimal time on a website. Extending aspirations from one million to two millions is more an artefact of spending money in mass marketing than in bringing about a genuine social movement. And if things have changed so much why are there so many relentless headlines talking about ‘dementia victims’, or people living with dementia on 20 hour trolley wait in the NHS? Jeremy Hunt can apologise all he wants, but with only eight years until David Cameron’s cure for dementia, one can hypothesise that time is running out.

For all the engagement and “consultations” in dementia, social care is on its knees; home care is at breaking point. In policy, “caring well” has been expunged from the NHS England Transformation network “The Well Pathway for Dementia”, the wrong UN document appeared in the draft Welsh dementia strategy (rights of child as opposed to rights of people with disabilities) (see page 15), and the NHS England guidance on care planning offensively made no reference to clinical specialist nurses “Admiral nurses” in dementia who are vital for palliative care.

Having annual conferences with the same speakers and the same power grabs, vested interests and agendas is taking us no further forward. I beg colleagues to stop taking the UK into a dementia banana republic “hot bed of chumocracy”.

@dr_shibley

 

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An emphasis on outcomes not process is now much needed for dementia

Today was a pretty disastrous day for me as a member of the army of million unpaid family carers. Yes, I merely ultimately burnt dinner for us which I had slaved for for hours.

But I am enormously grateful to be in a loving relationship where it can be hard work – and I will definitely  still miss it.

I am trained as an academic physician in dementia, with both a research and professional, and personal, interest in the subject. Just ask anyone who has known me well for the last 25 years or so.

As an unpaid carer, but one of many, I don’t feel the aggrandisement of the words ’empowerment’ and ‘engagement’ are what I particularly want, though I think these interrelated concepts, popular with professional grant applicants, are very important.

As not a member of the ‘conference class’, I do not in any way resent those with the power, influence or ‘deep pockets’ fronting yet again conferences where the greatest and good can exchange best practice with one another.

As an unpaid carer, I think what I really desire are “dignity”, “time” and “space”. Of course these are not words which trip off the tongue of professional wonks or conference organisers, as they suffer from the perceived lack of ‘measurable outcomes’.

The managerial adage ‘if you value it, measure it’ unfortunately comes with some operational baggage, ‘if you don’t value it, don’t measure it.” To say I was alarmed at the lack of ‘caring well’ in “The Well Pathway for Dementia”, despite the consultation events which undoubtedly were seen to happen, is a mild understatement.

I don’t care about myself, but I do think it’s a kick in the teeth to those who are, or who are concerned with, unpaid carers, paid carers with parlous employment rights, clinical nursing specialists providing high quality care (including in end of life and palliative care), respite care (day centres, for example), care at home, and so on.

At the start of this year, I was able to celebrate with close friends and colleagues the launch of my third book on dementia, published by Jessica Kingsley Publishers, entitled “Enhancing health and wellbeing in dementia: a person-centred integrated care approach.”

My first book “Living well with dementia: the importance of the person and the environment”, written around the NICE Quality Standard 30, was published in 2014, and won best health and social care book of the year award for the BMJ Book Awards in 2015.

My second book, “Living better with dementia: good practice and innovation for the future” published in 2015, the first of mine to be published by Jessica Kingsley Publishers, with main foreword by Kate Swaffer was the one where I confronted eating well, incontinence, GPS ‘tracking’, whole person care, delirium, ‘sporting memories’, antipsychotics and diversity, to name but a few.

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Thanks to all my close friends who came to support me on this important day for me. All the speakers and all the delegates attended entirely free of charge – it was an amazing afternoon, I thought.

This third (and not the last) book reviewed extremely well from a wide range of interested parties. In this book, I considered what I perceived to be what elements of the integrated care pathway might need to be present.

After the diagnosis of dementia, which also can come with a sense of relief that there finally exists an explanation for a whole series of ‘difficulties’, many people describe their journey through the NHS and social care as baffling, perplexing and stressful.

At my launch event, I was lucky to be joined about a number of great speakers, who don’t often tour the conference circuit despite being heavily involved with aspects of topics which interest me in dementia.

I’d like to thank Majidur Rahman, a friend of mine from when I did my MBA 2011-3. Majidur meticulously archived the event in the film below in his rôle at Aleph Productions. Whilst it comes in at about 200 minutes, I hope you agree it provides a wonderful, illustration of what can happen when people come together with individual concerns and hopes.

I’d also like to thank Kate Swaffer, who kindly gave up time to see us all and to lead the discussion at the end of the day. Kate is CEO of Dementia Alliance International, the partner group of Alzheimer’s Disease International. For me, too much of what is not good in commissioning dementia is the obsession with unsound metrics. For example, whether or not you change hearts or minds in newspaper articles by saying or not ‘dementia victims’ in large font as the headline might not be covered with the overall number of ‘Dementia Friends’.

And special thanks to Lisa Rodrigues CBE – personal friend, personal inspirational mentor, fierce advocate for health – who hosted the whole afternoon for me brilliantly.

I agree with the need for public education about dementia, articulated well in the only English dementia strategy ‘Living well with dementia’ (Department of Health, 2009). I do, however, think it inappropriate to equate a multi-million pound intensely professionally marketed product, where the scripting of sessions is not only inflexible but also intransigent, with a ‘social movement’.

Measuring the wrong outcome is of course, whisper it, a cardinal sin. The ‘impact’ of dementia rights is not how many placards you can hold up saying you ‘like rights’ (in no way reversing the closure of law centres which happened around the time of the David Cameron Dementia Challenge 2012). It would, however, be relevant whether the national government listens to professional concerns over the alleged offences in the United Nations Convention on Rights for People with Disabilities (UNCRPD). Or whether the Care Quality Commission cares seriously about abuses in degrading treatment, privacy or liberty as actionable abuses of human rights.

I would like to suggest something now deeply politically incorrect now. You do need ‘experts’ to help make the case that ‘supported decision making’ for dementia might be abuse of the UNCRPD. Such arguments could be and should be coming from DAI as they negotiate policy at the world stage viz United Nations or World Health Organization.

Likewise, the success of empowerment and engagement cannot be necessarily gauged by the number of local groups run, the number of policy groups ‘influenced’ or the number of harmonised facilitation sessions executed according to strict guidelines. This for me is a triumph of market-led process over outcomes leading to the potential of high quality care.

I hope that you can find time to listen to our video above. It wasn’t “commissioned”, or “budgeted for”, and does not have “outcomes” which need “evaluating”, but it does convey the notion that some things fall outside of the scope of a dementia industry.

I have no doubt about the ‘feel good factor’ for these annual conferences. And I think it’s terrific that the #Dementia2020 organisers went out of their way a number of free places available. But these are the same speakers with the same tired messages with the same glaring omissions – for me only, but everyone’s different.

Here’s to a happy time for me earlier this year.

 

Enjoy!

Go, figure.

 

@dr_shibley

 

 

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Is a desire to keep ‘dementia friendly communities’ apolitical good for the wellbeing of people with dementia?

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I don’t think anyone ever thought ‘if dementia friendly communities are a success, people are bound to vote Tory’. That would be ludricous. Or, by the same virtue, people are counting down month-by-month until 2025 when David Cameron, former Prime Minister, is expected to deliver a cure for dementia as part of the David Cameron Dementia Challenge.

That there has been bordering on contempt for social care in high political circles has not gone unnoticed. When the Alzheimer’s Society talks about ‘Fix Dementia Care’. the attention is focused on hospitals. But any practitioner or professional, not necessarily charity employees, knows that the entire health and social care system acts as one big system.

Today the report from the House of Lords on the sustainability of the NHS reported that years of no pay rises for nurses had led to a culture of low morale in the NHS. This is of course no big surprise. That junior doctors also had contracts imposed against their will, and had to go on marches to protest lawfully, further compounded the demoralised ethos in the NHS.

And yet it is staggering that senior managers in the NHS, let alone the Secretary of State for health, Jeremy Hunt MP, could possibly deem the wellbeing of its staff as irrelevant to the delivery of person-centred care in hospitals. As hospitals run up deficits, not because of financial mismanagement but due to years of deliberate underfunding, there are political questions to be asked from senior people in charity as to why the NHS is failing.

That this question has not been asked publicly for England in the delivery of dementia friendly communities is disappointing. That there is no ‘caring well’ in the NHS Transformation Network for living well with dementia is also a failure of policy, in the delivery of dementia friendly communities.

But I am also concerned about what is more a subtle problem with policy. That is, the operation of the dementia friendly communities seems to be concerned about the quality of the interaction of a person with dementia with commercial businesses (so that these businesses can improve their competitive advantage) than other key aspects of living in a community.

A person living with dementia might be living alone, I applaud very much sensitivity to someone’s religious or spiritual beliefs, such as dementia friendly churches or Sikh temples, but I what I think is less impressive are religious institutions being plastered with big logos of charities promoting their services in the name of ‘dementia friendliness’.

I recently ran a Twitter poll on whether living at home should be a priority for dementia friendly communities. The reason I asked this is that care at home is most definitely part of the World Health Organization’s concept of a dementia friendly community.

That domiciliary care is on its knees, due to provider problems and deliberate social care cuts, should be a concern for the idea of living well with dementia, unless you believe that a person living with dementia has such good facilities and transport links that he or she never stays at home anyway.

Surely the purpose, however, of dementia friendly communities is for people to live independent lives, even if that means living well at home, with their basic human rights (such as right to health) being respected and valued.

Looking after the primary carer, whether this be a paid carer, unpaid family carer, or friend, is also pivotal to the wellbeing of a person living with dementia pursuing ‘independent living’, and we know that this can fundamentally affect the timing (if at all) of a person living with dementia moving into residential care.

My Twitter poll not surprisingly provided that 95% of respondents felt that care at home should be a priority for dementia friendly communities, but an obsession for charity leaders to present dementia friendly communities as cost neutral or apolitical (e.g. “politeness costs nothing”) means that there are two unfortunate conclusions of policy. They are, firstly, charities can improve their branding under any definition of ‘dementia friendly communities’, and, secondly, the wellbeing of people with dementia and carers might suffer if the wrong political decisions are made locally.

This would be immoral.

 

@dr_shibley

 

 

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My first ever podcast for ‘The Dementia Monologues’ – on rights and dementia

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In 2015, I published a chapter in my second book on dementia, entitled ‘Living better with dementia: good practice and innovation for the future’, chapter 13 here. This contains a review of the cu

I am now proud to introduce my first ever podcast in a series which I have called ‘The Dementia Monologues’. It is on the subject of ‘dementia rights’.

 

The text of my podcast is below, in case you’d prefer to read it.

 

My name is Dr Shibley Rahman – and I am an experienced researcher, and a academic physician and academic lawyer by training.

 

This is the first of my series of podcasts which I’ve called “The Dementias Monologues”.

 

I hope you like them.

 

The law can be an ass, and its problem is that it represents only one source 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 somewhat astonishingly.

 

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’.

 

Reading something recently reminded me of how my own late father has been passed up for an opportunity on account of him being “colour-blind”.

 

Visual disabilities are interesting, but these disabilities occupy an unique position at the cusp between physical and mental health.

 

In fact any physical pathology in the visual pathway from retina to cerebral cortex in the brain can lead to an alteration in visual perception.

 

Visual disabilities are therefore interesting as they represent the entire spectrum from the medical model to the social model of disability.

 

Cataracts, or opacities of the lens in the eyes, are entirely peripheral.  Monet’s change in colour styles can be attributed arguably to his development of cataracts.

 

Cataracts can be ‘fixed’ medically as a day case surgery with laser treatment.

 

Compare this on the other hand to a dementia which affects the higher order visual processing in the brain.

 

This could happen, for example, in any dementia such as Alzheimer’s disease, and gets called ‘posterior cortical atrophy’.

 

But that is not the whole story.

 

“Rights based approaches” hardly trips off the tongue, and it took me considerable time to get to the bottom of what it’s all about.

 

The last big thing, a ‘dementia friendly community’, I feel, was wrong at so many levels.

 

The word ‘friendly’ was wrong, furthering a sense of oppression in a community which was far from homogenous in the first place.

 

At best it was merely patronising.

 

It further consolidated the notion of people who happened to have been given a diagnosis of dementia as passive recipients of services.

 

The human rights approach is not simply a list of possible ‘nice to have’ legal rights from your local Citizens Advice Bureau.

 

It is a CRITICAL way of holding large healthcare providers to account at one end, in terms of upholding dignity, privacy, and so on, and also in promoting the fundamentals of citizenship.

 

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.

 

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

 

In European rights convention law, a major instrument governing human right, article 5(1) of the European Convention on Human Rights provides that no-one shall be deprived of liberty unless the deprivation is carried out in accordance with a procedure prescribed by law.

 

It 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.

 

This essential human right belongs to everyone – including, crucially, people living with dementia.

 

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”.

 

Lady Hale, giving the leading judgment, held that human rights are the same for everyone.

 

As Lady Hale put it (at paragraph 33):  “The first and most fundamental question is whether the concept of physical liberty protected by article 5 is the same for everyone, regardless of whether or not they are mentally or physically disabled.”

 

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 recently.

 

The nuclear weapon for people with dementia I feel is the UNCRPD.

 

And the nuclear arsenal is completed by two incredibly influential advocates who “mean business”.

 

Prof Peter Mittler CBE and Kate Swaffer of Dementia Alliance International, a powerful advocacy group run by and run for people with dementia, ensured that the UNCRPD rose to the top of the agenda.

 

UNCRPD stands for the ‘United Nations Convention on Rights for People with Disabilities.”

 

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.

 

One of Articles 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

 

Rights are not the only solution, however.

 

If a 55 year-old female with dementia in a wheelchair, also living with multiple sclerosis, finds herself discriminated against, she might also have a valid claim in sex discrimination, age discrimination, or disability, depending on the material facts.

 

But to ignore the impact of inadequately addressing physical and mental health issues, as well as accommodation of disability, are significant barriers to participation in dementia friendly communities.

 

As Lady Hale put it (at paragraph 33):

 

“The first and most fundamental question is whether the concept of physical liberty protected by article 5 is the same for everyone, regardless of whether or not they are mentally or physically disabled.”

 

I feel, particularly, that a rights based advocacy offers a mechanism to campaign as a social movement.

 

People with dementia, numbering 47 million in the world, deserve to be treated as equals, not just to be ‘friendly to’.

 

Victimhood is sometimes unwittingly exacerbated by big corporate fundraisers – which is why we all need to be vigilant.

 

A rights based approach may help to reset the compass on a certain perception of dementia.

 

There’s nothing too small to make a difference.

 

“Anyone who doesn’t believe that small things don’t make a difference obviously has never slept with a mosquito.”

 

That’s from Malcolm Tucker.

 

Yes – for rights based advocacy, it’s important also to ‘sweat the small stuff’.

 

@dr_shibley

 

 

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