Tag Archives: dementia friendly communities

Were ‘dementia friendly communities’ the correct approach after all?

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Some time ago, the Alzheimer’s Society embarked on a programme of making a million (then two million etc.) “Dementia Friends”. These “Dementia Friends” were community ambassadors, not specialists in dementia, who went out to explain in standardised 45-minute chunks what dementia is.

To gauge how successful it has been has turned out to be rather difficult. To the best of my constructive knowledge, despite this investment costing millions, there has never been a peer-reviewed publication on the outcomes of that programme which consumed significant public money. The simple fact is, if this had been a project run by a social enterprise, it would have been subject to the most detailed of examination on value-based returns on investment.

I have no ideological beef with the Alzheimer’s Society. Far from it, I think in the last few years they have been uniquely successful in raising the brand awareness and brand identity of themselves and dementia. When the Health and Social Care Act (2012) was torpedoed by parliament, placing an emphasis on competitive tendering (despite much protesting otherwise), this was a useful competitive advantage for a lot of dementia policy.

There are well rehearsed arguments of where “dementia friendly communities” have been criticised, not just for the United Kingdom but in Japan. For example, it has been mooted whether the programme was primarily for the benefit for actual people living with dementia (here defined as people who’ve been diagnosed with dementia, not merely living with someone with dementia), or a carer. Or neither – it might have been primarily for the benefit of a high street shop or bank. Anyway, at the time, the ideology of behavioural insights and Nudge was beginning to gain momentum.

Indeed, Dementia Alliance International and Alzheimer’s Disease International, and indeed I, had some success in changing the vocabulary aware from ‘friendliness’, which for some denoted a rather patronising twang of ‘does he take sugar?’, to one of inclusivity and accessibility.

Where the Dementia Alliance International then had undoubted success, with the work of Kate Swaffer and Peter Mittler predominantly, was having ‘first mover advantage’ in realising the relevance of the United Nations Convention of Rights for People with Disabilities to the lives of people with dementia. I then discussed the importance of this to the World Health Organization’s policy of sustainable development goals, long before others “joined in”.

But I’m tempted now to heat and eat a strong dollop of humble pie. On the one hand, I have argued, quite vociferously, that promoting health must be a component of promoting wellbeing, and it was hard to sustain positive outcomes in dementia friendly communities against a backdrop of austerity or cuts, or a NHS and social care system perceived by many to be struggling to meet demand due to inadequate funding.

But actually, as put forward by the Alzheimer’s Society themselves, the experience of someone living with dementia, and his or her immediate friends or family, does not stop in a GP’s surgery or an acute admission. There is a wider community, where housing and transport could be ‘dementia friendly’.

Apart from a separate argument of whether it is appropriate to address persons in identity by one of their principal diagnoses (a conflict with person-centred approaches), it is evident to me that there is a strong argument for addressing the health assets of all people.

Indeed, as Chris Roberts, a leading campaigner in the UK said, and I hope that I’m not misquoting him, what is likely to be ‘dementia friendly’ is likely to be friendly for everyone. Should there be also  “frailty friends” or “cancer friends” for balance?

Taking a medical model of dementia even characterised by complexity and comorbidity, Chris’ approach is practical. Also, a move towards dealing with health assets would be a direct way of addressing health inequalities or the social determinants of health.

It also attempts to address the question of ‘what makes you healthy?’ as opposed to ‘what makes you ill?’  I feel that you can only measure value but asking people to identify what outcomes matter to them (ask ‘what matters to you?’ rather than ‘what’s the matter with you?’)

I remember first criticising ‘dementia friendly communities’ saying that it should be ‘dementia friendly networks’ (or similar), reflecting a potential online connectivity of all persons. But I am inclined to do a volte face on this too, in that it might not be possible to address all inclusion needs for people living alone with dementia from an app on a smartphone. As it happens, these are exactly the sorts of people who are genuinely ‘seldom heard’ at all – not just in conferences, but seldom heard from the NHS and social care radar until crisis point is sadly reached.

I think it’s now likely a more pro-active approach with advance care planning is needed to promote health assets for older people living with dementia and/or frailty. This is not simply a question of bean-counting, for the avoidance of admissions. This is not simply a question of reducing mortality or reducing morbidity, or being more cost effective. This, I feel, is good common sense?

 

@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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International solidarity needs to override domestic advantage-seeking to promote rights in dementia

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Dementia, legally, domestically and internationally, is a disability. There’s no escaping that simple fact.

Increasingly, I have become very worried about the bastardisation of rights for marketing purposes, losing sight of the real essence of what rights are (or indeed their jurisprudence basis, which is admittedly only a small part of debate).

Dementia friendly communities, although ill articulated (there are over a hundred different types of dementia, and the relationship between the community and the State has not progressed much with the evolution of the concept), are necessary but insufficient as a meaningful contribution globally. They are perfect for branding purposes of charity, including their ambassadors, but the level of discussion needs to be substantially more sophisticated.

The concept of dementia friends and dementia friendly communities was important because it seemed to mark a fundamental shift from a focus on meeting the physical and health needs of the person with dementia to an approach that recognises the need to support the person to achieve the best quality of life possible. But I believe this was fundamentally to misunderstand one crucial aspect: that mental and physical health are a crucial part of wellbeing. Put another way, you are unlikely to be able to participate in community and civic life if you are too depressed or immobile to go out.

There are two very different underlying objectives of dementia friendly communities which have as their end goal a better life for people with dementia. First, the objective of reducing stigma and understanding of dementia by greater awareness and meaningful engagement for persons with dementia of all ages – that is the lived experience approach. There is, unfortunately, a tendency for a ‘celebrity’ approach to the ‘lived experiences’, rather than collating the experiences, views or opinions, or back stories, of people with dementia even if at first they don’t appear ‘particularly sexy’ (or marketable). Second, the objective of empowering people with dementia in their own communities by recognising their rights and capabilities so that they feel respected empowered to take decisions about their lives – the rights approach.

However, I feel that the approach provided by the United Nations CRPD (Convention on rights for people with dementia) is entirely relevant here too. The CRPD sets the stage for a confrontation with the assumption that a disability may unduly justify coercive measures in the form of coercive detention  or as use of force. We saw this in care homes where people with dementia were being physically handcuffed to their chairs to prevent them from going anywhere. It is now incredible to believe that this was deemed possible, although it became institutionally acceptable for people to use the chemical cosh of antipsychotics inappropriately, sometimes, to have the same effect.

The CRPD instead requires that the individual’s self-determination and integrity remain paramount. Under the CRPD, member states have committed itself to raising awareness about persons with disabilities and respect for their rights. The initial failure of the World Dementia Council to have many people living with dementia was a spectacular example of offending this. Generally, persons with disabilities encounter prejudices that can affect whether they can obtain a job or make them feel that they are being discriminated against. The CRPD, rather, emphasises that persons with disabilities have equal rights to participate in political and public life, that is, to take an active part in the governance of Denmark. Even now, the World Dementia Council represents the views and needs of people without dementia already with power and influence, and vested interests, rather than the needs of people living with dementia or care partners globally.

Secondly, the right to live independently and to be included in society are protected by the CRPD. The Convention therefore obliges states to make efforts so that all persons with disabilities can choose their place of residence and not be compelled to live in institutions or institution-like accommodations. The UK and other countries, including low and middle-income countries, have been slow to join up approaches in health and housing, essential for dementia policy. This is going beyond the approach of the celebrity-driven dementia friendly community.

Thirdly, the CRPD furthermore requires that persons with disabilities should have equal access to health care. This I believe is incredibly important, yet many general practitioners and other specialists work in clinics that are not accessible to persons with disabilities, thus preventing persons with certain disabilities from being able to use their local doctor. The same applies to pharmacies and other places that are important for access to healthcare.

BRIDGE CRPD-SDG
The BRIDGE CRPD-SDG was devised to respond to increasing demands for trainings on the implementation of the CRPD and inclusive development, and how these link to achieving Agenda 2030 and the SDGs. It is a coordinated training investment, drawing from the resources and experiences of the IDA and IDDC networks and their members. I feel BRIDGE CRPD-SDG is now essential for dementia to move forward in a strong geopolitical context, away from domestic power games of people gaming the system domestically.

Discrimination of persons with disabilities is widespread – BRIDGE CRPD-SDG training results from common observations that despite great achievements to raise awareness about the rights of persons with disabilities through global advocacy, inclusive societies are still far from the reality experienced by persons with disabilities. Advocating for ‘all human rights for all persons with disabilities’ is urgent yet also complex. The CRPD sets high standards and obligations to ensure the effective realisation of all human rights (i.e. covering all sectors and dimensions of life) for all persons with disabilities (acknowledging diversity of gender, age, culture, impairments, ethnic origin, etc.).

Building a critical mass of skilled DPO advocates representing the diversity of constituencies in all regions requires coordinated efforts. The scope of work requires coordination of efforts drawing from different sources of expertise (e.g. in-depth understanding of the CRPD and its enforcement, inclusive facilitation skills, inclusive policies and governance). It requires drawing from the resources of diverse constituencies.

BRIDGE CRPD-SDG provides an important analysis.

  1. Mitigating against a disconnect between human rights and inclusive development, including the need to address concurrently CRPD provisions and policy reform (including through inclusive development and the SDGs) to avoid a disconnect between human rights standards, and the mechanics required to translate them into local realities.
  2. Inclusion of all persons with disabilities needs to be addressed. As it stands today, however, there are many problems with accessibility: persons who use a wheelchair can still not use public buses because the drivers or others are not permitted to run the ramp out to the wheelchair. Public websites are not always accessible to persons with disabilities. Many polling stations are not accessible, entailing that persons with disabilities are unable to vote at their local polling stations. The list could be much longer. People with dementia are not given the tools to perform the best they can, for example using memory aids or adequate housing or signage.

 

Dementia Alliance International and BRIDGE-SDG
I believe that Dementia Alliance International could foster a powerful synergistic strategic alliance with BRIDGE-SDG, and this could be a powerful key for member states to access rights.

BRIDGE CRPD-SDG strives to enact the general principles of the CRPD throughout its training objectives, content, and teaching methods:

By, for and with persons with disabilities. Advocates are needed with the skills required to participate and influence decisions that affect their lives, in line with the motto of the disability movement “nothing about us without all of us” and the objective of full and effective participation. This is indeed the motto of the Dementia Alliance International (see below). The CRPD is based on the recognition that persons with disabilities have the right to self-determination and autonomy, even when they have difficulty understanding complex issues or have difficulty expressing their views. This is going beyond mere tokenistic empowerment and engagement, or an illusion of involvement.

Ensuring and promoting diversity – Attention is paid to ensure the optimum representation of the diversity of the disability movement among participants, including gender balance, and representation of people with different types of impairments.

Participatory methods – BRIDGE CRPD-SDG is based on mobilisation of participants’ knowledge, and is very practical and participatory. It places emphasis on inclusiveness and strives to ensure inclusive facilitation for all groups and participants. Each participant is selected in relation to their experience, knowledge and active contribution to the promotion of rights of persons with disabilities, and they are expected to actively contribute to the content of the training. This is going way beyond selecting people who can market the shared values of domestic organisation with powerful vested interests.

Dementia Alliance International 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 . Members seek to represent, support, and educate others living with the disease, and the wider dementia community. Members comprise an organisation that strives to provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.

@dr_shibley

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A design for dementia friendly communities to benefit the tyranny of the majority?

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Nobody lives with dementia on its own. Many people living with dementia live with at least a few other conditions. Their health needs are complex, particularly since ‘dementia’ embraces itself more than a hundred different conditions manifest in often very different ways.

At the time of the Prime Minister Dementia Challenge (2012), the Alzheimer’s Society found an instant magic way of getting people to volunteer into promoting dementia awareness. It would be naïve not to expect that some of them would become brand ambassadors for the Alzheimer’s Society, even though the Alzheimer’s Society claimed not to be the same as Dementia Friends (despite the owner of the trademark being the Alzheimer’s Society, the use of the same corporate font FS Albert, the copious mention of Alzheimer’s Society in press releases and press reports.)

Far from promoting diversity, “dementia friendly communities” in England seems to be channeled through some weird dystopic corporate capture, including favoured outcomes for grant applications with the term ‘dementia friendly community’ in it, official award ceremonies, and regulatory capture through the official ‘recognition process‘.

In the real world, dementia care is on its knees. Social care has never had it so bad, with its funding having not been protected since 2010. The vast majority of NHS Trusts are now in financial distress due to gross underfunding and the sequelae of private finance initiatives, meaning that people with dementia are stuck in hospital through no fault of their own. It’s all very well allowing carers to visit outside visiting hours, but this is not an adequate solution to the needs of carers, whose psychological resilience needs protecting to avoid premature illness of carers or premature transfer into acute hospital or residential care of people with dementia.

At every possible juncture, the undeniable value of clinical specialist nurses, dementia advocacy services, or respite care services have been consistently rubbished, culminating in the airbrushing of ‘caring well’ from the NHS Transformation Network for living with dementia altogether.

dementia-well-pathway

[Reproduced under then Open Government license.]

The English dementia strategy was not renewed in 2014, and its lack of direction, apart from promoting the corporate branding of the Alzheimer’s Society, arguably has become a huge embarrassment to many professionals and practitioners specialising in the field, who can see health and social care systems at breaking point. The phrase “tyranny of the majority” (or “tyranny of the masses”) re-surfaced in interpretation of the #Brexit vote, and had been used in discussing an inherent weakness in the system of pure direct democracy and majority rule. Tyranny of the majority involves a scenario in which a majority of an electorate places its own interests above, and at the expense and to the detriment of, those in the minority, where by that detriment constitutes active oppression comparable to that of a tyrant or despot.

Nobody as such voted for ‘dementia friends’ or ‘dementia friendly communities’, and yet millions of pounds have been pumped into this initiative, with no official report as yet about outcome measures. Newspaper headlines are still littered with phrases such as ‘dementia sufferers’ and ‘dementia victims’, despite a nirvana of grants being awarded for empowerment, engagement and language in dementia – while enhancing health and social care in dementia is on its knees. “Advocates” call cheerfully, amidst their conference appearances, for greater GP training, while not seeming to appreciate that GPs have gone way beyond breaking point e.g. weeks to get a routine GP appointment, no more than a few minutes to see each patient with multiple co-morbidities. Potentially, through tyranny of the majority, a disliked or unfavored ethnic, religious, political, or racial group may be deliberately targeted for oppression by the majority element acting through the democratic process.

Part of achieving a ‘tyranny of the majority’ is through a “centralisation excess” when the centralised power of a federation make a decision that should be local, breaking with the commitment to the subsidiarity principle. In other words, your dementia friendly community is fine, and can be ‘badged’, so long as it conforms with ‘our’ vision. The new trademark for the Alzheimer’s Society (UK00003172674) was entered officially on the UK trademark register in November 2016, including even Class 18 (for trunks and travelling bags; handbags, rucksacks, umbrellas, parasols and walking sticks). The word mark is “United against dementia”, but with the airbrushing of clinical specialist nurses in high quality care in dementia, or without any effort at adequate resourcing of the social care profession, the three words are at danger of being entirely vacuous.*

In a parallel universe, in other words of academic research, professionals and practitioners there has been real progress in the definition of health to promote ‘social wellbeing’, towards a more dynamic one based on the ability to adapt and self-manage. Three domains of health are now characterised by the World Health Organisation: the physical, mental and social domains. Physical health was characterised as being capable of maintaining physiological homoeostasis through changing circumstances. Mental health as a sense of coherence, which contributes to the capacity to successfully cope and recover from psychological stress. Social health was characterized by three dimensions: (1) having the capacity to fulfil one’s potential and obligations; (2) the ability to manage life with some degree of independence, despite a medical condition; and (3) participation in social activities including work (Huber et al., 2011). These domains are fundamental to WHO’s community based rehabilitation where enhancing health and wellbeing in dementia is more than a mere corporate marketing exercise for ‘dementia friendly communities’. It engages and empowers specialists with years of experience, such as physiotherapists, occupational therapists and community nurses, promoting human rights and social value. We should be looking for excellent islets of excellence abroad for inspiration for best practice (e.g. Buurtzorg), as well as some of the excellent examples in the ‘enhancing health in care homes’ project from NHS England.

According to Vernooij-Dassen and Jeon (2016), the added value of the concept of social health lies in various core features. It is an umbrella for an array of concepts reflecting human capacities to participate in social life, such as reciprocity and dignity, and resilience; and yet it is explicitly said in the pre-scripted patter of ‘Dementia Friends’ that Dementia Friends are not supposed to befriend people with dementia, a departure from the Japanese ‘caravan’ scheme on which Dementia Friends is meant to be loosely based. Social health is, rather, clear overarching concept facilitating communication between the psychological, social and biomedical sciences; it does not focus on deficits but on remaining capacities, and more importantly, it relates to normalcy. The new concept of social health proposed by Huber and colleagues, is in line with the social model of disability, which places an obligation to value what people can do rather cannot do, but likewise imposes an obligation to make reasonable adjustments for the things which people cannot do (e.g. memory aids for memory problems).

In the past few decades, research among people living with dementia has addressed several aspects of social health based on a variety of theories. This has resulted in a useful, but somewhat fragmented knowledge base in this field. For example, more than 40 years ago Lawton and Nahemow (1973) described the environmental docility hypothesis which relates to the first dimension of social health, focusing on the capacity to fulfil one’s potential within enabling or disabling environments. And indeed we can see the seeds of this in the WHO Aged Cities and RSA Connected Communities, which predate ‘dementia friendly communities’ from the Alzheimer’s Society. The NHS and social care infrastructure has a critical rôle to play in self-care and self-management, or “hospital at home”, highlighting the remaining ability to manage life, despite a medical condition, provided that improved resources for community services are front loaded prior to any savage hospital cuts. Based on such evidence, and building on remaining cognitive skills, several interventions have been developed in dementia care such as the home environmental skill building program, cognitive rehabilitation, and cognitive stimulation therapy. These would have been natural bed fellows of the dementia friendly communities approach, save for the issue that funding for psychological therapies has crashed too.

The concept of personhood (being a person in relation to others) primarily emphasises the importance of social participation for people with dementia. Interventions focusing on maintaining or improving social relationships with people living with dementia, e.g. person-centred care and reminiscence, appear to not only have beneficial effects on social interactions, but also improve mood and cognitive function, reduce the use of antipsychotics, and enhance the quality of life of people with dementia in residential care settings. Having dementia communities framed by a tyranny of the majority, for example the Alzheimer’s Society and Alzheimer’s disease International, cannot possibly allow enhancing health and wellbeing in dementia to flourish. Being ‘united’ in dementia would mean substantial funds from national societies directly to the world stakeholder group of people living with dementia, Dementia Alliance International (DAI), rather than national societies being rather obstructive in this cause? As an impartial independent observer, I can only say that DAI must be for the benefit of people living with dementia primarily rather than for the benefit of Big Charity.

The system though has been designed to cascade down a particular ‘vision’ of dementia friendly communities, where brand ambassadors can locally affect local economies through ‘badging’ dementia friendliness – this might include getting a chain of high street banks to say they’re ‘dementia friendly’, whatever the actual reality of the boots on the ground. The whole deception comes from the appearance of localisation despite strong central influences. This is understood best through the notion of “swarm intelligence” (SI) is the collective behaviour of decentralised, self-organised systems, natural or artificial. The concept is employed in work on artificial intelligence. The expression was introduced by Gerardo Beni and Jing Wang in 1989, in the context of cellular robotic systems.

SI systems consist typically of a population of simple agents or “boids” interacting locally with one another and with their environment.  The agents follow very simple rules, and although there is no centralised control structure actually dictating how individual agents should behave, local and to a certain degree random interactions between such agents lead to the emergence of “intelligent” global behavior, unknown to the individual agents. Examples in natural systems of SI include ant colonies, bird flocking, animal herding, bacterial growth, fish schooling and microbial intelligence.

Critical to this are the ‘dementia friend champions’, known in corporate world as the “brand ambassador”, a person who is hired by an organisation or company to represent a brand in a positive light and by doing so help to increase brand awareness and sales. The brand ambassador is meant to embody the corporate identity in appearance, demeanor, values and ethics. The key element of brand ambassadors is their ability to use promotional strategies that will strengthen the customer-product-service relationship and influence a large audience to buy and consume more. Predominantly, a brand ambassador is known as a positive spokesperson, an opinion leader or a community influencer, appointed as an agent to boost product or service sales and create brand awareness.  Big Charity is not concerned with ‘sales’ as such, though it appears to have been unhealthily obsessed with fund raising for the sake of it, and excessive use branding and public relations.

The term “brand ambassador” loosely refers to a commodity which covers all types of event staff, varying between trade show hosts, in store promotional members and street teams. The fashion industry however, solely rely on celebrity clientele in order to remain brand ambassadors. Furthermore, brand ambassadors are considered to be the key salesperson for a product or service on offer. Critical in the functioning of Big Charity has been the engagement of a super-breed of highly articulate and experienced “celebrity persons living with dementia”, adding the “authentic voice”, even if a consequence is to drown out professionals and practitioners who also want to make health and social care systems succeed.  It has become excruciatingly embarrassing to read that the outcome of ‘organic’ “involvement and engagement events” conclude with the advocacy of dementia support workers and dementia friendly communities, both high vis products of the Alzheimer’s Society, while the NHS and social care systems are on their knees? But be in no doubt the real patient carer voices are extremely important, but often a third party (e.g. social enterprise, university grant recipient) benefits too these days, and certain things might become lost in translation thus.

But when policy goes awry, it is the moral responsibility of people to say so, even if grants depend on it. As the great parliamentarian Edmund Burke said, “The only thing necessary for the triumph of evil is for good men to do nothing.”

References

Huber M, Knottnerus JA, Green L, van der Horst H, Jadad AR, Kromhout D, Leonard B, Lorig K, Loureiro MI, van der Meer JW, Schnabel P, Smith R, van Weel C, Smid H. How should we define health? BMJ. 2011 Jul 26;343:d4163. doi: 10.1136/bmj.d4163.

Dröes RM, Chattat R, Diaz A, Gove D, Graff M, Murphy K, Verbeek H, Vernooij-Dassen M, Clare L, Johannessen A, Roes M, Verhey F, Charras K, The Interdem Social Health Taskforce. Social health and dementia: a European consensus on the operationalization of the concept and directions for research and practice. Aging Ment Health. 2016 Nov 21:1-14. [Epub ahead of print]

Lawton, M.P., Nahemow, L. (1973). Ecology and the aging process. In C. Eisdorfer & M.P. Lawton (Eds.), The psychology of adult development and aging (6th ed.) (pp. 619–674). Washington, DC: American Psychological Association.

Vernooij-Dassen, M., Jeon, Y.H. (2016). Social Health and Dementia: The power of human capabilities International Psychogeriatrics, 28(5), 701–703. doi: 10.1017/S1041610216000260

 

* Please note that the publication of the trademark is in the public domain, and therefore under the law of equity I am fully entitled to publish a link to it under English law.

 

@dr_shibley

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Honey, I shrunk the dementia-friendly State

“I think most people thought the Big Society was utter drivel.”

Those were the words of Ian Birrell, journalist and political commentator.

The election result for David Cameron MP was disappointing. He had the opportunity of a lifetime to win a resounding majority for the Conservatives, despite the undoubted unpopularity of Gordon Brown as Prime Minister – and he blew it.

The 2010 manifesto for the Conservatives, unusually, was a big hardback book, acting as an ‘invitation for government’.

The Big Society was the theme which ran all the way through it, but it was an innovation which didn’t get adopted. The strands through it were devolution and localism, radical public service reform and social action. Voluntarism was important.

What’s there not to get excited about? Dementia friendly Manchester, personal budgets, Dementia Friends. Some winners have taken all.

The multimillion pound Dementia Friends project was a magnificent opportunistic brilliance from the Alzheimer’s Society, as they were able to secure money for dementia ‘knowledge and awareness’ which fitted in nicely with the Big Society.

It fitted in with the sweeping Lansley reforms, later known to be disastrous, which surrounded the Health and Social Care Act (2012), which Baroness Shirley Williams was critical in aiding and abetting despite initial reservations. This staple gunned private market competition and commissioning onto an already sick private market in health and social  care.

Nick Clegg MP also had a natural anti-state liberal sympathy, which fitted in nicely with the strongly ideological thrust of David Cameron’s ideas, camouflaged in a compassionate soft shell. The community would take the place of the State – and it work for the dementia friendly community too…

Many people resented the idea of the State delivering health and care, in the name of people reaching into their pocket to be ‘public spirited’. This could mean donating time for Dementia Friends, or donating money to boost Alzheimer’s disease drug research.

The idea that Britain stopped being a nation but being a burgeoning welfare state has of course been capitalised by UKIP to much success, which arguably helped to precipitate a win for #Brexit.

The spending cuts accompanied the re-invention of the State, and this was seen as an opportunity by the Coalition government 2010-5. Social care was no longer ring fenced, and it became clear despite public noises to the contrary from David Cameron and Theresa May later that NHS spending did not match the increase in demand.

These cuts immediately got in the way of what the Big Society was meant to achieve. The same thing is happening now. With cuts in NHS and social care, patients with dementia cannot be discharged from hospital due to social care cuts – care packages aren’t ready, which means that patients cannot be admitted to hospital. Despite all the multimillion pounds spent on Dementia Friends, dementia care has never been in such a parlour state.

Nowhere is this seen more clearly than in the airbrushing of ‘caring well’ from the NHS England Transformation path for ‘Well pathway for Dementia’.

dementia-well-pathway

Austerity was a political choice, not an economic one as is clearly seen from the fact that national debt has gone through the roof between 2010 and 2016 – further squeezing the ability of the State to deliver dementia care.

The Coalition government did not actually re-distribute the power to the society, nor did they improve democratic representation, leaving civil democracy untouched. So the entire thing had the look and feel of a trite marketing brand – and this is exactly what the English dementia policy sadly now has become.

With the disappearance of the State, respite care, domiciliary care and the capacity for clinical specialist nurses have all been sidelined as a low priority compared to getting a plastic ‘Dementia Friends’ badge for your lapel – this is, of course, a crying shame.

This year’s Autumn Statement was one of the final nails in the coffin. There was no mention of the additional money needed to make the Better Care Fund work; not even that, the ‘precept’ and the Better Care Fund were heralded as reasons by the Government for why social care has never had it so good.  With the Conservative majority government now delivering ‘Brexit’, and likely to campaign on in 2020 with the ‘let’s finish the job we’ve started’ mantra, and with SNP retaining Scotland, and UKIP chipping away at some Labour votes, it is not inconceivable there’ll be another Conservative majority government in 2020.

Dementia policy has become deeply ideological politically – and this is a total disgrace.

And with that you can say a final goodbye to the dementia friendly State, a policy which has scant regard for huge swathes from clinical specialists, social care practitioners to hospices. But fear not – there’ll be only five years to wait for one of the many cures for dementia on the horizon.

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Rights in the post ‘dementia friendly community’ world

Rights for persons living with dementia are at risk of being hijacked by persons not living with dementia but who want to ‘facilitate’ this industry. Taking the physical disability movement as a comparison, the assertion of disability rights continues to be most vocal from people living with physical disability. Likewise, rights for people living with dementia and carers cannot be sold as bitesize products for commissioners to be truly authentic, further marketed by appropriate ambassadors in third sector entities. The imbuing of a rights based consciousness is too important to be trivialised this way, in a world which lives post ‘dementia friendly community’.

A ‘dementia friendly community’ 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. It ran the risk of not only being patronising to a group of people, but being run for the benefit of business and third sector, and careerist people, wishing to seek competitive advantage. It further consolidated the notion of people who happened to have been given a diagnosis of dementia as passive recipients of services, leaving people to be ‘engaged’ at pre-fabricated meetings rather than genuinely involved in co-production. 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 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.

In a post ‘dementia friendly community’ world, often articulated through the prism of higher income countries, rights take on a different meaning as they are inalienable and universal. They therefore offer an alternative economy to the one occupied by personal budgets and consumer-directed care (again further reinforcing the idea of people with dementia and carers as passive recipients). The alternative economy of citizenship, mutuality and reciprocity, offers a new and important language for the whole 50 million currently living with dementia, and complementary rights for  those closest including unpaid and underpaid carers.

There is, I feel, a great advantage to reframing the debate into one of social capital as a collective good and which emphasises its collective benefits. Under this perspective, trust, reciprocity and strong social norms are seen to effectively regulate cooperative social relationships. The social capital makes the whole stronger than the sum of its constituent parts, and rather than people seen as individual bits in a competitive world behave to ‘fill in the gaps’ of  others. Combining a private and public good perspective, Inkpen and Tsang (2005) provide a network centric definition of social capital as “the aggregate of resources embedded within, available through, and derived from the network of relationships possessed by an individual or organization” (p. 151).

But there is no reason to believe that this other way of doing things should be necessarily denied inward investment; the crucial thing is that this is not just to ‘facilitators’ or big corporates, but for people living with dementia themselves and carers. Dementia is characterised by complexity, and you really have to simplify it at your peril. It also attracts a high level of multiple morbidity; it is extremely unlikely that a person lives with dementia alone, but also with a range of other issues such as heart or lung problems. Therefore, the idea of a ‘dementia friendly community’ is entirely bogus. A community as such which is friendly to ‘dementia’ should be friendly to all, and defining people by disease labels, while enticing to big corporate charities, is not how the real world works at all.

A social network perspective can focus on the enduring patterns of relationships among interacting social actors (i.e. entrepreneurs, firms) through examining the social, economic, or political network structures of ties that provide actors with opportunities and constraints. A core position derived from the network’s notion, as articulated by Mitchell (1974), is “that if people are tied to one another by a variety of links, then they will find it difficult to sever social relationships and therefore are obliged to carry out the expectations and obligations entailed in those relationships” (p. 283).

The ‘interconnectedness’, a term which was all too familiar to Kitwood, is further strengthened now by the ‘internet of things’. There is no doubt that the Internet has significantly expanded the meaning of community for older adults. Once tied to physical locations, communities created through online experiences transcend space, time, language, and financial, physical, and other traditional barriers. Dementia friendly communities became obsessed with the idea of big corporate banks or high street brands welcoming shoppers better; but this was to ignore the plethora of other barriers (such as financial) or physical disabilities stopping people engaging with such capitalist communities in the first place. Dementia friendly communities merely becoming an extension of David Cameron’s version of Nudge capitalism entirely defeated the purpose of promoting citizenship and rights of people living with dementia, unless you happen to believe that their most important rights are consumer rights.

But now there’s the “internet of things” (IoT). Essentially the idea is to give physical objects identities on the internet. Just like your computer or phone are connected to the internet now, in the not too distant future, so too will your car, house, fridge, and almost anything else you can imagine. This world of technology, if not subject to cyberattack or malfunction, might conceivably make one’s life easier. Gartner estimates that the Internet of Things (IoT) will support total services spending of $235 billion in 2016, up 22 percent from 2015. Services are dominated by the professional category (in which businesses contract with external providers in order to design, install and operate IoT systems), however connectivity services (through communications service providers) and consumer services will grow at a faster pace.

In the new post-dementia friendly era, it is imperative that “rights” are not simply viewed as a “nice to have” phenomena, or a new product to sell to commissioners. They can instead be the vehicle by which people with dementia (and other conditions) and carers can flourish. Social enterprise activities are local ventures that have both a market orientation as well as fulfilling a social or cultural purpose. Strengths-based approaches to community development emphasise the social “capital” assets of communities. Strengths-based approaches aim to reinforce local talents and build local capacity, and the critical thing is that, as for physical disability, people’s talents are best harnessed in particular areas. This approach is incredibly important to people who live with dementia still in employment, where neurodiversity means that people are in rôles most suited to them.

By focusing on local priorities and strengths and assets – rather than perceived community deficits – pride, confidence and motivation are enhanced. The rights-based approach uniquely offers people a chance to participate fully, and lessens dependence on external approaches to “solving” local community issues. Social capital, as measured by the strength of family, neighbourhood, religious and community ties, supports both physical health and subjective wellbeing, and raising social capital in local and middle income countries through rights based approaches is achievable.

The success of a ‘dementia friendly initiative’ might include a big grant, angel investors, venture capitalists, or private equity investors. And indeed the lazy wishing to make money out of ‘dementia rights’ will seek the same sources of income. But the interconnectedness of people is the disrupting factor here, arguably. Examples of the pervasive power of online social networks in the lives of older adults are everywhere, including Skype and FaceTime.

Technology can be compared, for example, with traditional approaches of harnessing social capital such as “timebanking”. LinkAges’ Bay Area Time Bank (http:// timebank.linkages.org/) is a community-based service exchange network where members provide neighbourly services to one another  in exchange for time. Facilitating both online and of ine interactions, Time Bank members, including older adults and family caregivers, can address personal needs through exchanges with other members that focus on their interests and skills and explore new possibilities for meaningful engagement in their communities, exactly in the spirit of the timebanking as introduced by ‘true radical’ Prof Edgar Cahn.

Furthermore, there have been lots of potential opportunities in using crowdfunding to support and fund projects in developing economies. According to a recent Nesta blogpost, the countries that raised the most money in 2015 were: India ($27.8m), the Philippines ($26.9m), Nepal ($25.5m), Mexico ($24.8m), and Kenya ($19.9m). All of these countries — with the exception of Nepal — have budding crowdfunding ecosystems and could become leaders in their regions.

Be in no doubt – the language is changing from marketing of facilitation to genuine emboldening of rights, where people with dementia all around the world can call the shots. ‘Dementia friendly communities’ benefited corporate and large charities more than people with dementia themselves, and goodwill for this was bound to run out.

References

Inkpen AC, Tsang EWK (2005) “Social capital, networks, and knowledge transfer.” Academy of Management. Acad Manage Rev 30(1):21

Mitchell JC (1974) Social networks. Annu Rev Anthropol 2:21

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Dementia as a disability needs to encourage sustainable achievable goals

Earlier this year, Jessica Kingsley Publishers published my book ‘Living better with dementia: good practice and innovation for the future’.

As in previous work of mine, I wished to emphasise that the ‘nothing can be done for people with dementia’ philosophy is wrong. In fact, there is currently a legal obligation in England and Wales for any entity subserving a public function to obey the regulations of the Equality Act (2010). At an international level, the significance of viewing dementia through the prism of disability is further emphasised in a joint statement from Alzheimer’s Disease International and Dementia Alliance International published today.

Under this instrument, it states clearly that dementia is a disability. The consequences of this legally is there’s an obligation to make ‘reasonable adjustments’ for people living with dementia, treating any cognitive disability on par with a physical disability. In the same way you would implement wheelchair ramps to allow equal access to your buildings for your employees, you’d also give them the best way for them to do their job – if they needed, say, aids in reading out text on a computer.

Not all rights are enshrined in law, by any means, and there is the unintended consequence that laws which are not enshrined in law are perceived as not worth worrying about. But this is actually far from where we are on disability law. The United Nations in fact observes the International Day of Persons with Disabilities on Dec 3, 2015, and it can be tempting to see this arm of work as somehow totally different from other work such as “age friendly cities”. Rights are an important basis of advocacy, and I was determined to emphasise the rights agenda in my book – here’s an extract to explain.

This year, three themes are highlighted in the agenda: making cities inclusive for all, improving disability data and statistics, and including those with invisible disabilities in society and development. Of course, we don’t just have ‘age friendly cities’ or ‘dementia friendly cities’. You can develop a dementia at any stage, though the risk of developing dementia gets bigger as you get older. Dementia is not just something ‘old people get’. And we should be thinking about making all communities not just cities ‘friendly’, but a better philosophy is to require communities to be accessible and inclusive.

This cartoon conveys the sentiment felt by many of us: “dementia friendly communities” should be good for everyone, and the label jars uncomfortably with the aspiration not to label persons by their label – or specifically medical diagnosis.

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These themes echo the specific mention of persons with disabilities in five of the Sustainable Development Goals (SDGs): education; economic growth and employment; creation of inclusive, safe, resilient, and sustainable cities; reduction of inequalities; and data collection related to monitoring the SDGs. I think this is particularly important as dementia does not just affect people in more economically developed countries. All of us in policy need to make better links between the sustainable development goals and the ‘dementia friendly communities’, and to think especially how people living in low and middle income countries (LMIC) may also benefit from current initiatives too. I think the ‘care for today, cure for tomorrow’ oversimplifies the current situation, but through the sustainable development goals we have a means of achieving something sustainable and measurable.

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Meeting Tommy Dunne

 

 

 

 

I met Tommy Dunne, I think, the first time I met Chris Roberts. This was at the Alzheimer’s Show in Manchester.

I met Joyce and Jayne there too.

Whilst the first time I met Tommy he told me how he received his diagnosis of dementia, I think our conversations have since then covered quite a range of topics. There’s absolutely no doubt that Tommy loves Everton; and Liverpool; and golf.

Tommy will explain to you, if the conversation comes up, how he was given the diagnosis with the words: “The good news is that you don’t have bipolar; but the bad news is that you have young onset dementia.”

There’s no reply to that really. I think as more research gets done we’ll uncover that there are many more people beneath the age of 65 who are living with dementia.

I have found all the individuals I’ve ever met with young onset dementia very interesting, in fact, but all very different. Invariably, they tell me how their diagnosis totally turned upside down their social and working lives, including interaction with friends and the employer.

Tommy mentions in this video (above) how his dementia was misdiagnosed as a mood disorder. I have found this quite common in fact, and on deeper inquiry I found this to be quite a consistent strand in the literature too.

This means that people with young onset dementia, including Alzheimer’s disease or vascular disease, get told they are primarily depressed or manic by the medical profession. Not only are they potentially given the wrong management, but they are also denied the actual correct way to progress.

There is no ‘right or wrong’ answer on the correct way to progress, but generally the approach is to value what people can do rather than home in on what people can’t do. This means playing to people’s strengths, not weaknesses.

An ability to live better with dementia is of course the essence of a ‘dementia friendly community’. It will have given Tommy enormous pride, as it will have done for Gina Shaw who is equally lovely, to receive one of the ‘Dementia Friendly Awards’ from the Alzheimer’s Society for the SURF project.

The best way to learn about what it’s like to live with dementia is simply to ask as many people you can about living with dementia. People closest to them, including friends and family, will give you a complementary perspective too. This is not information you can get from any books.

Meeting the person rather than fixating on the disease is not, however, to ignore the health and wellbeing needs of that person. People living with dementia and carers also get ill like everyone else, say with an acute exacerbation of bronchitis or asthma, and are entitled to the best care from the NHS too.

It’s an honour to have met Tommy and Joyce. The work that they both do to promote an understanding of dementia is incredible.

It’s not hyperbolic for me to say that I’m proud I know them.

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In 'dementia friendly communities', it's how we relate to one another which really matters

I actually don’t know what ‘a better shopping experience’ is, although I’ve had plenty of awful shopping experiences down Oxford Street in the run up to Christmas. Joking aside, despite the developments in anti-discrimination legislation in England for people with physical disability, there’ve been concerns that there’s still room for improvement.

Anecdotally, people living with dementia tell me that there’s been a huge ‘sea change’ in their shopping experience on the high street. Some of this might be due to the Prime Minister’s Dementia Challenge, or initiatives such as from the Alzheimer’s Society regarding ‘dementia friendly’ banks or businesses.

A major aim of the policy of ‘dementia friendly communities’ was originally to enable independent living, by having transport and housing which was ‘fit for purpose’. With the current problems in social housing nationally, and with cutbacks to certain transport infrastructure projects, it is utterly reasonable to think about how ‘friendly’ policy is, let alone ‘dementia friendly’.

Try listening to George Osborne’s budget this week through the prism of dementia friendly communities. Listen especially to the political rhetoric about ring fencing NHS spend (but probably not in reality at a pace in keeping with increased demand). And listen to the deafening silence about the continued cuts in social care.

One aspect of a community is the relation of members of that community with statutory services or other providers. If one takes a ‘supply side’ approach, you are meant to have better choice if there are more providers. Then you get into the language of the consumer and the market, and we end up going down a certain ally. ‘Dementia friendly businesses’ then exert competitive advantage by ‘adding value’, in other words by being civil to people with dementia.

But of course it should be more than that. People living with dementia in fact have civil rights – some of this comes from the law, some of these rights are moral rights. But whether your religion is the Human Rights Act, the UN Declaration of Human Rights, or the UN Convention on Rights for People with Disabilities, these rights definitely exist. In theory, they can be exerted through bodies such as the Equalities and Human Rights Commission, but the reality is that any law is as good as its implementation – take the national minimum wage for example.

Whilst dementia friendly communities had (and still does) have a thrust in promoting independent living, it’s also been mooted that care homes form a ‘community hub’. A big proponent of this idea is Prof Martin Green, Care England’s CEO. There’s a huge swathe pointing in the direction of why many would like living in a care home to be reconcilable with independent living.

For a start, residents in care homes are still individuals who are entitled to the best standards of NHS care. It’s said moving into a good care home should mean that all you’re doing is ‘changing your address’. There have even been yet further pilots looking at the implementation of personal budgets in care homes – but we’re all too aware of the direction of travel of these pilots. The aim is, somehow, to see ‘care homes’ de-institutionalised, a form of ‘home’ where there’s ‘care’.

At first blush, the term ‘dementia friendly communities’ is awful as it implies a ‘them against us’, with people with dementia identifiable as a single homogeneous mass. But I think the strength of the word ‘community’ comes from if we’re all considered as citizens, with equal participatory rights, bounded in powerful relations to one another.

It matters enormously that we understand culture and diversity. This is NOT so we understand ‘BAME’, ‘LBGT’, ‘low/middle income countries’, ‘young onset dementia’ and ‘prior intellectual disabilities’, in isolation.

Each member of these groups is an unique individual. We cannot homogenous all Asian people, in the same way we can’t homogenise all people above the age of 65, or all males. But these groups matter overall in understanding how the relate to others. This is NOT a case of meticulously charting their similarities and differences, but learning from each other so that we understand our community as a whole.

While I’m on the subject, if you’re a citizen who’s just been given a diagnosis of dementia, vast inequalities do exist in the quality of the diagnosis and ‘post-diagnostic support’ (howeverso defined). It’s crucial we begin to understand these inequalities to improve health and social care as a whole.

As is often the case, the whole is much stronger than its individual components.

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Should there be a legal duty ensure people with dementia get help to manage their finances?

A press release on the new Scottish Social Attitudes report about dementia (and caring) was published late yesterday evening.

I found the findings very positive taken as a whole, in relation to the Scottish dementia policy transposing ‘dementia friendly communities’.

However, one of the ‘issues’ that dementia friendly communities as a policy was supposed to address still remains a stubborn problem area.

That is, a very large majority of people (83%) said they ‘agreed’ or ‘agreed strongly’ with the statement that ‘caring for someone with dementia is often very lonely’.

Latest initiatives such as TIDE, “Together in Dementia Everyday”, will be in this context most welcome. Joining up family carers in a support network is a very sensible thing to do, for a whole host of reasons.

Another finding for me was particularly noteworthy, although the findings on stigma continue to be of huge interest to me (especially in the area of employment especially for people with younger onset dementia).

That was, “88% of people thought that the Scottish Government should require banks to have a legal duty to make sure people with dementia get help to manage their finances.”

Any law has to be enforceable, so there are operational questions about how such a civil law would come to effect, taking offences on the civil standard of proof, the ‘balance of probabilities’.

A legal duty for banks to ensure that people with dementia get help to manage their finances assumes that such individuals can be easily identified. The first problem is whether a person with dementia will necessarily know they need help in managing their finances. For example, there will be some people with certain dementias with full capacity who feel they can manage their financial affairs.

On the other hand, there might be certain people with dementia who show a strong risk-taking or impulsive streak, but with full capacity, who are possibly ‘dangerous’ when it comes to managing their finances. It is impossible to offend autonomy for someone with full capacity (otherwise it becomes coercion or at worst assault). There’s currently a strong policy ethos, right I feel, that you can’t ‘wrap people up in cotton wool’ either: you need risk to live better with dementia, as I have long argued.

But, taking an offence into the realms of civil law, would make it easier to find banks culpable, in theory.

This is because the alternative might be a criminal offence, and that would have to be ascertained ‘beyond reasonable doubt’. We already know from the work of the Serious Fraud Office on how difficult it can be to make prosecutions using this level of proof.

The offences under the Fraud Act (2006) which would fall under this realm are not clear cut either: most lawyers feel the actual offences would be fraud by false representation, fraud by failure to disclose or fraud by abuse of position, but we have very little case law on this. We would have to revert to the original Law Commission guidance on the intent of the Fraud Act (2006), and the concomitant parliamentary discussions by the legislature behind the purpose of the Act.

The duty from the bank, however, could be legislated for as an extension of existant civil legislation, such as the Theft Act (1968), or could be a completely new stand alone statutory instrument.

And is the bank the correct defendant anyway? The experience of the Care Act in England has kept personal budgets in the limelight, with interest in safeguarding aspects. If more people take control of their own individual budgets, should the accountability for this budget transfer, from say a bank, to the holder of a personal budget or some appointed proxy?

Such a duty is an example of a ‘rights based approach’, further advancing the notion of people with dementia having enforceable rights. But there is a valid question here as to why this cannot be done under current legislation: in other words, why could a duty not be enforced under the obligation of reasonable adjustments under the Equality Act? It does not matter that banks are clearly doing a public function?

The report on social attitudes is undoubtedly welcome, and further strengthens the need for the ‘8 pillars of community support’ in the Scottish jurisdiction.

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