Tag Archives: Alzheimer’s Society

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

apps

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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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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Pass the baton. Dementia friendly communities need to be accommodated within English dementia care.

 

In some parts of the country, service provision, within the NHS and social care, and between primary and secondary care, is being re-designed. The aim is to focus on better outcomes for clinical care, so that a person can live as well as possible independently in the community, but have essential access to acute services as or when required.

Only last week, the British Geriatrics Society and the Royal College of General Practitioners showcased some outstanding concrete examples of integrated care for older people living with frailty. I feel that the themes of their analysis, and real examples, resonate with some of the themes in my own thesis on enhancing health and wellbeing in dementia using a person-centred integrated care approach. Bear in mind neither of us had no idea what the fruits of our labour were!

To promote the best quality of life and care, you really need a handle on the best quality of evidence from here and around the world, and be willing to create some of the research of best practice yourself. There are some ‘enduring themes’, like the complexity of the real conditions of real people, often numbering quite a few – not just ‘frailty’ or ‘dementia’, requiring effective communication between various disciplines and good care planning. Knowing how to transition from living with a condition to preparing for a good death through palliative and end of life approaches is important.

If you look at the finalists for this year’s Alzheimer’s Society 2016 dementia friendly community awards, you’ll see great examples of dementia being local priority. The aim is clearly to make the community more ‘dementia friendly’, including for example local businesses, reminiscence clubs or arts or theatre. I indeed discuss this approach in the new book under the construct of ‘promoting wellbeing’, a pivotal clause in the Care Act (2014) (s.1(1)).

This for me is one of the greatest historical ‘strengths’ of the dementia friendly communities approach. Using such vehicles, there can be greater understanding of what the particular needs and expectations of people living in the community might be. And underlying this is a much improved practical knowledge of what dementia is, facilitated through ‘Dementia Friends’ from the Alzheimer’s Society.

There is much to celebrate here in this approach. We should easily wish to build on these initial first steps by widening such projects so that they are not just ‘dementia friendly’ but (all) ‘inclusive environments’ or ‘accessible environments’ in keeping with a rights-based approach. I talked about the need for such an approach as far back as March 2014 on this very blog.

It is clear from the 2020 Dementia Implementation Plan that ‘dementia friends champions’ are to be given support in rights based approaches, and organisations as diverse as ADASS and the civil service (as well as high street brands), will further ‘roll out’ DementiaFriends. We need to build on this initial success such that it benefits health and social care providers, not just these parties and the Alzheimer’s Society, in embedding a human rights based approach throughout the health and social care system. That way, health and social care professionals and practitioners, and regulators, can all be focused on abuses of human rights, including all too frequent examples of neglect and abuse. The lack of ‘caring well’ in the Dementia Intelligence Network sticks out like a sore thumb, and a bit of let down for great organisations such a TIDE carers, and those trying to promote clinical specialist nursing care, respite care or domiciliary care.

On p.16 of this implementation plan “Prime Minister’s Challenge on Dementia 2020”, the delivery plan target is cited as,

All health and social care organisations over time recognise dementia friendly communities and the benefit of them and sign post people affected by dementia to their local dementia friendly community“.

And it is indeed telling that there are no finalists showcasing best practice in integrated person-centred care in a health or social care institution in the 2016 Alzheimer’s Society Dementia Friendly Communities finalists list, but with funding for the NHS and social care having been driven to breaking point from the current Government in the last few years this is not altogether surprising.

In ‘Dementia Friendly Communities v. 2.0’, it would be a positive thing for professionals in acute hospitals, for example, to be able to see adequately staffed wards with no rota gaps, where there is not  rapidly turnover of burnt out staff, where patients are not abandoned onto ‘outlier wards’, i.e. the opposite of ‘person centred care’.  The acute hospital, where many people with dementia can end up for medical treatment at some stage, arguably needs to be ‘dementia friendly’ too, but not necessarily badged up by the Alzheimer’s Society (for which the BSI accreditation scheme might not be ideally placed to reward in any case.)

And this is where indeed the Alzheimer’s Society does need to improve vastly in its ability to ‘let go’ to allow others space in providing care. There is a huge demand for specialist nurses, including Dementia UK’s Admiral nurses, in offering high quality dementia services, such as caring for the carers, palliative and end of life care, support, training, and advocacy, which simply cannot be met by people trained to a lower level of expertise, including Dementia Advisers and Dementia Friends. It is ubiquitously accepted that Dementia Friends do not offer the appropriate level of expertise needed to deliver high quality of care in settings such as hospitals and hospices. Furthermore, as Admiral nurses work across various settings and share a ‘common vocabulary’, they are ideally placed to ensure cost-effective continuity of care, delivering outcomes such as avoiding hospital admissions or transfer to residential settings.

Some of the emphasis needs to be changed also for ‘dementia friendly communities 2.0’ away from strong marketing of the Alzheimer’s Society and high street brands in offering competitive advantage. Just because a business claims to be ‘dementia friendly’ and seeking enhanced profit doesn’t always mean it offers a better customer experience for a person with dementia nor family member.

I feel in dementia friendly communities 2.0 there needs to be a shift  away from consumerism promoted somewhat mischievously (and fraudulently sometimes) as ‘choice and control’, and more towards better quality human relationships between people. This is ironically in keeping with the original Philip Blond formulation of the ‘big society’ under which climate dementia friendly communities emerged so easily under a Tory government. This thing called ‘social health‘ can mitigate against the profound lack of social inclusion which can accompany a diagnosis of dementia. And indeed it is even hypothesised that better social health in networks of people might even be beneficial in preventing decline or further progression of dementia. This is interesting, and of course pivotal to the World Health Organization’s plans for community based rehabilitation and ‘sustainable development goals’.

I think we need to open up the market much wider than the Alzheimer’s Society to develop ‘inclusive environments’ . People need to ‘walk the walk’ when it comes to collaboration. We should thank the Alzheimer’s Society for their brilliant work, but it is clear that this needs to be developed to a much higher level with much greater leadership from people with dementia (and not merely ‘involvement’). But the NHS, social care, and other third sector organisations clearly have an important rôle now, in the baton being passed on from the excellent and outstanding Alzheimer’s Society. This is urgent and essential for the approach in England to be harmonised with the rest of the world, including Alzheimer’s Disease International and Dementia Alliance International.

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Thinking the unthinkable. A grand coalition of Dementia UK and the Alzheimer's Society?

In a crowded space, the Alzheimer’s Society and Dementia UK, two large dementia charities, effectively ‘compete’ as dementia charities. However, in the last few years, funding for the Alzheimer’s Society for initiatives such as ‘Dementia Friends’, costing millions, as a public-not profit partnership has helped to skew this space, such that the Alzheimer’s Society has commanded a relative advantage.

There has been criticism that the clinical nursing specialist approach of the ‘Admiral nurses’ is not an appropriate business model, but it is also true that specialist nursing has been repeatedly marginalised in policy documents in the last few years. It is however generally acknowledged that, despite a widely acknowledged problem in English policy in bridging the ‘diagnosis gap’ of undiagnosed people living with dementia, social care and post-diagnostic support for dementia has been on its knees due to savage cuts in social care spending.

The clinical advantages of proactive case management of clinical nursing specialists have been widely rehearsed elsewhere. That is, despite a need for raising ‘awareness’ from people who are relatively underskilled themselves in dementia, there needs to be input from trained and skilled people in dementia. That the workforce in the NHS and care need to be skilled is widely accepted. As the demands for the acute medical services are likely to remain at fever pitch, it is a priority to keep admissions of people living with more advancing dementia, particularly those also living at frailty, at a minimum as such patients, particularly if unaccompanied by a caregiver, can do particularly badly in an acute admission due to the distress caused by an unfamiliar environment (amongst various reasons).

Politically, we are in a weird territory. It is felt that the most likely outcome of the UK general election to be held on May 7th 2015 will be a hung parliament, particularly if Scotland decides en masse to reject the Labour Party, and to vote for the Socialist National Party in majority. This has led to a former Tory chairman to argue, most recently, that a coalition pact between the Conservatives and Labour after the election may be the only way to keep the UK together if the Scottish Nationalist Party holds the balance of power at Westminster. There was formerly a grand Coalition during the Second World War.

That the Alzheimer’s Society and Dementia UK do different things in itself should not worry people in society at large, but the lack of plurality in this hugely important sector of dementia should. An overly dominant provider in any sector can lead to a dominant position where success begets success, and ‘Dementia Friends’ could be the shoo-horn in for services provided by the Alzheimer’s Society, even if this approach is vigorously denied or officially unintended by the Alzheimer’s Society. Whenever the media refer to dementia these days, it invariably is in the context of the Alzheimer’s Society not Dementia UK, and the Alzheimer’s Society, not Dementia UK, form the Secretariat of the All Party Parliamentary Group in dementia.

Charities could get 10-year contracts to help deliver NHS services if Labour wins the general election, according to Andy Burnham MP, Shadow Secretary of State for Health, to an audience of voluntary sector leaders. Not-for-profit care organisations would be given “a form of preferred provider” status under legislation that a Labour government would introduce to replace parts of the coalition’s 2012 Health and Social Care Act (2012). The move would recognise their contribution to strengthening communities, and form part of the legislative agenda of a new Labour government, if elected. This appears to be intended by Labour give voluntary sector providers “longer and more stable arrangements” than for-profit contractors, but will concern NHS campaigners as further evidence of public sector resources being transferred to non-public recipients.

Addressing the health and social care conference of Acevo, the voluntary sector chief executives’ group, Andy Burnham is reported to have said: “The voluntary sector should have a different status in law when it comes to contracting, in terms of length of contract and the way contracts can be renewed without open tender.”

There is a growing recognition that all those involved in dementia care need a greater level of expertise in managing general health problems. Several cardiovascular disorders have been suggested as risk factors for dementia, such as hypertension, hypercholesterolemia, atrial fibrillation and heart failure; it is generally felt that correct management of these conditions can slow down cognitive decline, reduce the risk for dementia, and a clear focus has to be in future on the interplay of medications for such conditions.

Co-morbid conditions can overlap with each other during the management of treatment, further mandating a case for clinical nursing specialists in “proactive case management”. Patients and caregivers can experience difficulties with the therapies prescribed for each co-morbid condition, reducing adherence to the treatment plan and consequently diminishing its efficacy.

Innovative commissioning, through the “prime contractor” model encouraging plural stakeholders including the third sector, could have a constructive role here in meeting wellbeing outcomes for the National Health Service, which will be critical in the delivery of “whole person care”. (For an overview of the primary contractor model see the Department of Health (2013) document entitled “The NHS Standard Contract: a guide for clinical commissioners“.) There is also a coherent economic case for such proactive case management in the drive to avoid certain acute hospital admissions for people with dementia.

In Staffordshire, the plan currently is for four clinical commissioning groups (CCGs), NHS England and Public Health England are working with Macmillan Cancer Support, and with the support of two local authorities, to redesign cancer and end-of-life care services. They are in the process of co-designing new care pathways with patients and carers.

Under such an arrangement, care is to be managed and contracted through a single provider, which will be held accountable for the entire patient experience and clinical outcomes. Involvement of service users and carers is central in determining the outcomes for this contract. The “prime provider contracts” will replace around 70 separate sub-contracting arrangements. Providers will need to demonstrate they have achieved a pre-agreed set of quality measures within a given expenditure target.

Contracts will be for ten years. In the first two years, the CCGs and Macmillan will support the selected prime providers to improve the currently available data on activity and costs. It is very difficult to deny that the impact of Macmillan specialist nurses has been a beneficial one, and has revolutionised post diagnostic service support and care for the cancers.

Aa key element of the prime provider’s work in the first two years will be to improve the data and analytics in order to provide a basis for a truly outcomes-based contract. They will also be expected to demonstrate real improvement in patient and carer experience.

Patient safety and patient experience are pivotal for the NHS Outcomes Framework. The aim of the NHS is not only to add years to life, but to add life to years. One could argue that the roles of raising awareness and ‘advising’ are important but complementary to highly specialist nursing support. Such specialist nursing support could work in tandem with specialist social practitioner input, as it is acknowledged that liberty and safeguarding issues are especially important for some patients in later stages of dementia in whatever care setting.

A grand coalition of more than provider, such as the Alzheimer’s Society or Dementia UK, and in social care, may be “unthinkable”, but perhaps has to be put on the agenda, especially if serious moves afoot to deliver whole person care are to become a reality. They would need to have meticulous governance arrangements in place. As a comparison, while ‘Manc dev’ arguably gives some financial stability and some breathing space for innovative integration of health and care to flourish, there is an apt concern that the proper mechanisms are not in place if anything goes wrong.

For dementia post-diagnostic support to ‘crash’ due to improper governance of funds would indeed be the unthinkable.

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The English 'Dementia Vision' is a despotic dystopic farce

Dystopia

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

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

The new policy document is here.

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

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

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

better care fund dv

 

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

Better Care Fund

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

pcp

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

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

Dementia V|ision

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

For example

timetable for NSD

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

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

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

 

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

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

 

 

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44% of people with dementia feel they lose friends after being diagnosed

Dementia 2012, the first in a series of annual reports from the Alzheimer’s Society, described how well people are living with dementia in 2012 in England, Wales and Northern Ireland.

According to page v of the ‘Executive Summary’. the sample comprised a YouGov poll in December 2011 involving 2070 individuals, but also “drew on existing research and current work”, and polling done by the Society with people in the early stages of dementia in a survey distributed through the Society’s support workers in England, Wales and Northern Ireland. A number for this last group is not stipulated. It is unclear how large the cumulative sample is for each of the key findings, therefore.

This work helps to provide a slide of the key findings underpinning the need for ‘Dementia Friends’, an Alzheimer’s Society and Public Health initiative. For example, one such slide from a presentation available on the internet is:

Slide 1

In detail the findings reported are as follows.

The survey shows that respondents reported losing friends after their diagnosis or being unable to tell them. Nearly half (44%) of respondents said they had either lost most of their friends, some of their friends, or hadn’t been able to tell them.

When asked if they lost friends after their diagnosis of dementia 12% of respondents said yes, most of them, 28% said yes, some of them, and 47% said no.

4% of respondents reported that they haven’t told their friends and 5% didn’t know.

Should we surprised if “44% of people with dementia feel they lose their friends after being diagnosed?”

I remember when I became disabled and went into recovery from severe alcohol dependence syndrome at the same time. Employment was far from my mind. At the time, my friends circle did severely contract, but I should like to think that the friends I am left with are not superficial friends. They are people I suspect would’ve stuck with me through thick and thin anyway.

They are not ‘judgmental’.

Receiving a diagnosis of dementia is not like receiving a criminal conviction. Norman McNamara once joked with me saying he had not been ‘convicted of dementia’ in explaining why he preferred the term ‘GPS trackers’ to ‘GPS tagging’, as a mitigation against wandering.

When I was at the first Alzheimer’s Show in London earlier this year, I met the wife of someone who had received a diagnosis if dementia, and they had not told their friends of their diagnosis for about years.

I suppose that if you have mild memory symptoms as a feature of Alzheimer’s disease, you might not need to tell people that you have a diagnosis, in the same way that you might have an indwelling catheter for multiple sclerosis.

The memory loss may not be immediately obvious.

But this is part of my overall criticism of ‘dementia friendly communities’ – to be ‘friendly’ to people living with dementia, howsoever that is defined, you need to identify such individuals reasonably reliably. I do not buy into this ‘if you see an old biddy have a difficulty, think they might dementia’; particularly since dementia is not confined to older people.

The statistic “44% of people with dementia feel they lose their friends after being diagnosed” becomes even more complicated once you consider various factors which impact upon this finding potentially.

How deep was the friendship in the first place?

And of course what type of dementia? Frontal dementia (behavioural variant frontotemporal dementia) is reasonably common in  the younger age group epitomised by progressive behavioural and personality changes.

The thing about this condition, however, is that the person with dementia very often has little or no insight into his change in personality (with the presentation having been noticed by a close friend, or even husband/wife).

Also another feature of conditions affecting the frontal lobes (the part of the brain near the very front of the head) is that such people with problems with the frontal lobe can be extremely bad at making ‘cognitive estimates’.

This was first shown by Prof Tim Shallice and colleagues in the late 1970s: e.g. “how many lamp posts are there on the M1?” “Forty.”

And in the presentation of behavioural variant frontotemporal dementia, it could be obvious to friends that something might be happening as your personality was changing. Therefore, in this scenario, it might be reasonably foreseeable that friends drift away.

Why should people who were friends no longer be bothered? One reason is that ‘they don’t want the hassle’. Maybe staying friends might at later stage involve some sort of requested financial support? Or maybe the former friends don’t want to be involved in ‘uncomfortable discussions’ about dementia?

This is indeed where an initiative to recruit one million ‘Dementia Friends’ through information sessions are useful to dispel the myths and prejudice, as mitigation against stigma and discrimination?

But one of the outcomes which ‘Dementia Friends’ will have to evaluate is whether this project encourages people to ‘befriend’ people with dementia. It is not a mandatory outcome, although people are encouraged to think of this as one of the possible commitments/actions from the information session.

In Japan, befriending has been a successful policy, but the entire care system is much more convincing than our one which has been starved of funds in parallel with Dementia Friends receiving its funding from the Department of Health and Social Care Fund.

But, anyway, would one necessarily expect the friends that one has lost through disclosing a diagnosis of dementia to be matched by friends obtained through ‘Dementia Friends’ in terms of quality? It is of course impossible to answer this question.

This topic is of course closely entwined with the subject of the 2013 report on loneliness. Encouraging participation in wider networks including social networks such as Facebook and Twitter can in the real world help to overcome this.

But with leading politicians continuing to use words such as “horrific”, “evil”, “devastating” in relation to dementia, is it any wonder that, whatever other initiatives, people who have received a diagnosis of dementia are resistant to tell their friends because of the potential reaction?

The statistic “44% of people with dementia feel they lose their friends after being diagnosed” sounds like a typical fundraising slogan, and indeed can be used to justify a national project such as ‘Dementia Friends’.

The proof of the pudding comes in the eating. Will a significantly fewer number feel that they lose friends after being diagnosed (whether they actually lose friends) as a result of “Dementia Friends”? Whilst, as I have explored elsewhere, there is a lot to commend ‘Dementia Friends’, I think it would be wrong to raise this expectation.

And if a significantly fewer number do not feel that they lose friends after being diagnosed, despite “Dementia Friends”, it would be interesting to explore further why. For example, it could be that there are fewer home visits by health professionals, although it is normally argued that ‘anyone who needs a home visit gets one’.

The statistic though acts a useful cover for a quite sinister discussion.

 

 

 

 

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Social stigma, music and living well with dementia

There are 800,000 people living with dementia in the UK, it is thought.

There is no cure at the moment.

“Attitudes are changing. The old stigma is being replaced by the recognition that people with the disease can be helped.”

Later on, John Humphrys spoke this morning to a number of clinicians involved in managing persons with dementia.

The package begins with an initiative called ‘Singing for the brain’.

Singing for the Brain is a service provided by Alzheimer’s Society which uses singing to bring people together in a friendly and stimulating social environment.

The power of music, especially singing, to unlock memories and kickstart the grey matter is an increasingly key feature of dementia care. It seems to reach parts of the damaged brain in ways other forms of communication cannot.

Organisations such as Music for Life, Lost Chord, Golden Oldies and Live Music have also improved accessibility live musicians, both professional and amateur, most of them trained to deal with the special needs of an elderly, memory-impaired audience.

A nice overview of some of these initiatives is given on the Age UK website.

The way in which the brain might do this is indeed interesting.

Results from Petra Janata (1999) suggest that the dorsal medial prefrontal cortex (MPFC) associates music and memories when we experience emotionally salient episodic memories that are triggered by familiar songs from our personal past.

MPFC acted in concert with lateral prefrontal and posterior cortices both in terms of tonality tracking and overall responsiveness to familiar and autobiographically salient songs.

The MPFC is right at the front of the brain.

F1.large

My interpretation using the “bookcase analogy” of “Dementia Friends” is that while the bookcase representing your memories for events is shaking this bookshelf representing memories triggered by music is unaffected.

It’s virtually the same as the bookcase responsible for sporting memories, in my view of things.

I wonder if ability to reactive sporting memories is correlated with ability to reactivate music memories?

This would explain the efficacy of this approach to living well with dementia.

We not only have to face the reality of the scope of people living with dementia in society.

But as Humphrys articulates in his item.

“Part of it is how society is set up to respond to people who look confused… instead of reacting in a fearful way, we are thinking in terms of how to help such people”, so comments Dr Andrew Crombie from  South West London and St George’s Mental Health NHS Trust.

You can listen to the whole of the presentation by John Humphrys – for one week only from the date of this blogpost – on the BBC iPlayer.

Play from about 1 hr 34 mins in on this page.

Social stigma is the extreme disapproval of (or discontent with) a person or group on socially characteristic grounds that are perceived, and serve to distinguish them, from other members of a society. Stigma may then be affixed to such a person, by the greater society, who differs from their cultural norms.

Social stigma can result from the perception (rightly or wrongly) of mental illness, physical disabilities, diseases such as leprosy (see leprosy stigma), illegitimacy, sexual orientation, gender identity, skin tone, education, nationality, ethnicity, ideology, religion (or lack of religion[3][4]) or criminality. Attributes associated with social stigma often vary depending on the geopolitical and corresponding sociopolitical contexts employed by society, in different parts of the world.

According to Goffman in “Stigma: Notes on the Management of Spoiled Identity”, there are three forms of social stigma:

  • Overt or external signs, such as scars
  • Deviations in personal traits, including forms of medical conditions
  • “Tribal stigmas” are traits, imagined or real, of ethnic group, nationality, or of religion that is deemed to be a deviation from the prevailing normative ethnicity, nationality or religion.

Prof Alistair Burns is the National Clinical Lead for dementia for NHS England, and was interviewed by John Humphrys this morning.

“You have highlighted very well in the discussions today and yesterday .. about something which we hear much more of now, and that is: people can live well with dementia. On the interview yesterday, we heard from Linda who felt she was very supported by her friends yesterday, and you said that when you interviewed Grace she felt normal.”

Humphrys was concerned that this was only representative of people living with dementia in the earliest stages.

Burns said, “There are many things that we can do, whatever the stage of dementia.”

“If we look at person-centred care, that is treating people as individuals we’ve heard from ‘Singing for the brain’ and ‘Life Story Work’ can bring people together.”

And have we been doing this successfully thus far?

“It’s fair to say that there has been pockets of excellent work being done around the country.. And one of the things which we must do is to encourage people to do and to learn from areas which are doing well like the example we saw yesterday, and like the example we saw today.”

Humphrys then went on to probe Burns much more about the stigma.

“We know that, from surveys of people for people above the age of 55, dementia is the most feared disease, much more than, say, stroke, heart disease or cancer.”

“There is something about the stigma. What we have seen is a lessening of the stigma, things like ‘Dementia Friends‘, working with schools, and getting ideas into schools.”

Humphrys proposed that it is necessary was to get rid of the idea that there was something about dementia that is “shaming”.

“What you got yesterday from today and yesterday was that people felt normal and supported. But I hear from my own clinic that, experiences where once people receive a diagnosis of dementia, others cross the street.”

“And trying to wrestle that is important.”

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My personal experience of an introductory day to 'Dementia Friends' Champions

OK it’s not heaven on earth – but Kentish Town London does have some merits I suppose.

Image 1

To say that I am passionate about the dementia policy in England is an understatement.

Throwing forward, I believe living well with dementia is a crucial policy plank (here’s my article in ‘ETHOS journal’), for which service provision needs a turbo boost through innovation (here’s my article co-written in Health Services Journal).

“Dementia Friends” in reality means rocking up in a venue somewhere near you for about 45 minutes to learn something about the dementias.

Once you sign up on their website, the experience is also backed up by an useful non-public website containing details of training, pre-training materials, and help on how to promote sessions. You can also provide on that website precise details of any ‘Dementia Friends’ information sessions that you run in due course.

I had known of this initiative mainly through Twitter, where I am very active. I find the twitter thread of @DementiaFriends interesting.

Even I’ve been known to get involved in a bit of mass hysteria myself:

1 in 3

I possibly signed up despite of the substantial interest in the media and social media, what psychoanalysts might call an “abreaction”. There’s a large part of me which feels that I do not need 45 minutes on dementia, having studied it for my much of my final undergraduate year at Cambridge, done my Ph.D., written papers such as this (one of which even appears in the current chapter on dementia in the Oxford Textbook of Medicine), written book chapters on it (which as this one which appears in a well known book on younger onset dementia), and even written a book on living well with dementia.

But Prof Alistair Burns is a Dementia Friend – and he’s the clinical lead for dementia in England.

I went out of curiosity to see how Public Health England had joined forces with the Alzheimer’s Society. I must admit that I am intensely loyal to the whole third sector for dementias, including other charities such as the Joseph Rowntree Foundation, Young Dementia UK, Alzheimer’s BRACE, and Dementia UK.

I have my own particular agendas, such as a proper care system for England, with the provision of specialist nurses such as Admiral Nurses. I think some of the English policy is intensely complicated, best reserved for those who know what they’re talking about – especially people currently living with dementia and all carers including unpaid caregivers.

I personally think the name ‘dementia friendly communities‘ is ill conceived, but the ethos of having inclusive communities, well designed environments and ways of making life easier for people with certain thinking problems (such as memory aids, good signage) highly attractive. It would be unfair in my view for this construct to be engulfed in cynicism, when the fundamental idea is likely to be a meritorious one.

But I don’t think Dementia Friends competes with any of that, and one must be mindful of the gap society had of awareness of dementia.

This gap is still enormous.

And the aim is for people – not just Pharma – to be interested in dementia. These are real people with their own lives, not merely ‘potential subjects for drug trials’ (worthy that the cause of finding an effective symptomatic treatment or even cure might be potentially). But these are people living in the now – take for example the Dementia Alliance International, persons with dementia with beliefs, concerns and expectations of their own like the rest of us.

Only at London Olympia at the “Alzheimer’s Show” [and it is very well I am not a fan of such events which I have previously called “trade shows”], the other week, I presented at London Olympia for my ‘Meet the author session’, arranged on the kind invitation of various people to whom I remain very grateful.

Meet the author

At “The Alzheimer’s Show”, I met within the space of ten minutes a lady newly diagnosed with vascular dementia who did not intend to tell anyone of her diagnosis, and one person married to someone with probable dementia of the Alzheimer type who did not even tell his friends for three years.

It’s a rather badly articulated slogan but the saying ‘no decision made about me without me’ I think is particularly important for dementia.

These are two real (without warning) discussion points from the floor.

“Are people with dementia actually involved with any of the sessions?”

Yes: in fact my pal Chris Roberts (@mason4233) in Wales delivers his Dementia Friends sessions word-perfect for 45 minutes, without telling his audience that he himself lives well with dementia until the very end. Chris tells me this dispels, visibly, preconceived prejudices from his audience members. Chris blogs regularly on his blog, and has written for the ‘Dementia Friends’ blog.

“Why should people with dementia be given special elevated status compared to any other medical condition?”

It’s a difficult one. Some people believe that with dementias people will easily ‘snap out of it’ ‘if they pull themselves together’. This is completely at odds with one of the learning points that dementia is chronic and progressive. And of course people in the real world – viz CCG commissioners – have to decide how much they wish to prioritise dementia ahead of, instead of, etc. other medical conditions such as schizophrenia. But people living with dementia can present with known problems such as forgetting their pin number, and therefore it’s not actually a case about giving people with dementia an ‘elevated status’, but getting them up as individuals to be expected from anyone. Although it’s motherhood and apple pie, it’s very difficult to find, whatever the motive, the intention of dementia friendly high street banking fundamentally objectionable.

Dementia Friends Champions become rehearsed in the programme at one-day sessions across England. What happens is that you watch videos on their website, sign up for a day (where you get to take part in a Dementia Friends session) and then attend the session somewhere close to where you live habitually.

The sessions are run all over England at regular frequency. You sign up for a session, then you get an email quickly afterwards. You go to the meeting.

My meeting started on time. I am physically disabled, so I was grateful for easy access to the venue in Voluntary Action Camden (I could use the lift).

One of the things some of us mean-minded people pick holes in is whether the venue itself might be dementia-friendly. TICK.

I thought so.

Image 4

The group dynamics worked really well.

My group consisted of interesting people, all ‘realistic’ in their expectations of shifting the Titanic of messaging of negative memes in the media. Many of my group were particularly interested in social equity, fairness and justice, reading between the lines.

I particularly enjoyed speaking with one delegate who is a NHS consultant in psychiatry. We went through pleasant niceties of what he was examined on in his professional membership exams (in his case the difference between schizophrenia and drug-induced psychosis). But he was great to chat to during the day.

I bored him to death with my example of persons with dementia putting numerous teaspoons of sugar in their cups of tea, on rare occasions, due to ‘utilisation behaviour’, a particular predilection for sweet foods since the onset of dementia, or cognitive estimates problem, a very niche area of cognitive neuropsychology for both of us. But this was simply in an activity on making tea where such private chit-chat was irrelevant; the actual session as delivered, on how to make a cup of tea, was far superior than the two hour version I did in a workshop for my MBA in that well known method known to managers: “process mapping“.

The whole day was presented by Hannah Piekarski (@HannahPiekarski), Regional Volunteering Support Officer for the London and South East region for “Dementia Friends.

I’ve sat through more presentations than you’ve had hot dinners, but the standard of the presentation was excellent. Although the presenter clearly had a corpus of statements to make, the presentation was not contrived at all, and the audience had plenty of opportunity to ask questions at points during the day. The presenter evidently knew what she was doing, and was a very good representative of the Dementia Friends programme. She gave her own ‘Dementia Friends’ session which the group of about twenty found faultless.

Hannah even ran a session after the lunch break on what makes a BAD presentation.

Here are my scrappy notes which I took – and please don’t take this to be representative of the actual discussion of what makes a bad presentation which we had in our group.

PRESENTATION

I SO wish some of my lecturers (including Readers and Professors) had been to Hannah’s session on generic skills in presentations. Whatever you do after ‘Dementia Friends Champions’ day, there’s no doubt that such a session is really useful across various sectors including law and medicine.

You don’t really have to take notes as it’s all fundamentally in their well laid out handbook.

Image 3

The day was run with the purpose of not giving you tedious crap on how to run a session. But it was furnished with many useful pointers. For example, I learnt of possible venues such as a local library, church halls, and community centres.

Actually, I have in mind to ask Shahban Aziz, CEO of BPP Students, Prof Peter Crisp (Professor of Law at BPP Law School) and Prof Carl Lygo (also Professor of Law at BPP Law School) whether I might run dementia friend sessions at this law school which I attended for my pre-solicitor training. I’ve always had a bit of a discomfort that lawyers are not really given any introduction to dealing with people with dementia, other than professional regulatory considerations or in direct dealings with the law such as mental capacity? I think it’d be great if law students had a basic working knowledge of what dementias are.

It was nice for me to get out of my flat, and meet a range of people. These people ranged from other people in the third sector, for example the Dementia Action Alliance. They bothered to provide free coffee all day, and a free lunch.

Image 2

And when I tweeted that on my @legalaware Twitter account from my mobile phone in the lunch break (you’re told to turn your mobiles off for the day), I received this smartarse (#lol) remark from one of my 12000 followers immediately.

coeliac

You’re given a guidebook. You’re not coerced in any way into becoming a Dementia Friend or Dementia Friend Champion. You’re told specifically having done Dementia Friends you can do whatever point of action you wish, even if that includes supporting another charity other than the Alzheimer’s Society.

You are told that the point of the current dementia strategy in England in no way is intended to be political.  In support of that claim is that the current strategy has overwhelming cross-party support.

The sessions include information about dementia and how it affects people, as well as the practical things that can be done to help people with dementia live well in their community.

I was given resources to answer people’s questions about dementia and suggest sources of further information and support.

After completing the course Dementia Friends Champions can access resources and tools to help set up and run sessions for people who sign up as Dementia Friends.

These resources include exercises, quiz sheets, bingo sheets, book club ideas and reading suggestions. You’re made very familiar with the content of ‘Dementia Friends’ as they helpfully provide ALL the material on the website when you sign up. They don’t hold any of it back. The point is you go away and run the whole session as ‘Dementia Friends’. Having seen how the 45 minutes works, I have no burning desire to change any of it.

Having said that, there are one or two things I would do differently, hypothetically. The format makes it very clear the presenter is not an expert in dementia or counsellor. I think this actually helps in that an expert possibly could write an hour long essay on each of the five statements for finals, and get truly bogged down in “paralysis by analysis”.

One of the possible features of the ‘Dementia Friends’ session is comparing dementia to a bookcase. This is a well described metaphor, first proposed by Gemma Jones. I have indeed used it to propose a scheme of explaining ‘sporting memories’, an initiative which recently won the Alzheimer’s Society Dementia Friendly Communities national initiatives awards.

Here’s my pal Tony Jameson-Allen picking up his gong.

Tony

There’s a bit in the explanation of the bookcase analogy that gets quite technical in fact.

With the presenter of the session having said that he or she is not an expert in dementia or counsellor, it seems counter-intuitive to me that there is an explanation of the organisation of memory using two highly technical locations in the brain, the hippocampus and amygdala. But things like that are not a ‘deal maker’ or ‘deal breaker’ for me. There’s an excellent video of a presentation of the bookcase analogy by Natalie Rodriguez floating around, in fact, but we were all encouraged to be explain the analogy ‘live’ in our sessions, ‘rather than playing the DVD’.

I have absolutely no problem with the material being pre-scripted. I used to supervise neuroscience and experimental psychology for various colleges at Cambridge between 1997 and 2000 inclusive, and, whilst the guidance for teaching that was not as intense, it’s fair for me to mention that supervisors knew exactly what they had to cover for their students to achieve at least an upper second in finals.

Dementia Friends Champions, like me, are then be encouraged to run Dementia Friends sessions at lunch clubs, educational institutions and other community groups, but it could also include ideas such as arranging a meeting to talk with a small group of friends.

I intend to run five sessions to achieve about 100 further dementia friends. I conceptually find targets anywhere quite odious, and see exactly where this ambition has come from (Japan). On the other hand, nobody is a clairvoyant. The fact the number exists at all (aiming for March 2015) is a testament that this programme is being taken seriously. Had the number been set at 400, then we would all have said ‘job done’ some time ago.

I am actually, rather, amazed that somebody somewhere has signed off for a national programme to invite ordinary members of the public to attend free of charge a day on delivering the Dementia Friends programme, with nice company, and of course that free coffee and lunch.

I am also amazed that the actual substrate of the information sessions for ‘Dementia Friends’ is being offered to the member of the public free of charge, and it effectively has been paid for by Government.

The operational delivery of ‘Dementia Friends Champions’ day was totally faultless from start to finish. Even though I have nothing to do with their output, the Alzheimer’s Society here in England have done a brilliant job with it.

And finally I’ve tended to query whether it can be a genuine ‘social movement’ which so much resource allocation.

But people are genuinely interested in the programme, as these tweets to me demonstrate, I feel:

Tweet 1

Tweet 2

Look.

In a different jurisdiction – Australia – a close friend of mine, Kate Swaffer (@KateSwaffer), blogs daily on her busy life living with dementia, which includes being an advocate, travelling, cuisine (Kate is very experienced in sophisticated cooking), a background in healthcare, a student at the University of Wollongong, and what’s it like to live with dementia after being given the diagnosis. Her blog is here.

Chris, Norrms and Kate are all quite different – like the rest of the population – getting on with their lives. And as the very famous adage goes, once you’ve met one person living with dementia, you’ve done exactly done. You’ve met only one person with dementia.

And there’s clearly a huge amount to be done. Also at the Alzheimer Show one carer reported a person with dementia being ‘lost to the system’, completely unknown to anyone for care for three years.

I had a huge volume of concerns about this initiative, and I’m no pushover as far as being ‘in with the in-gang’ is concerned. But I strongly recommend you park your misgivings and go there wanting to be a part of a “change”.

I went on the day after the passing away of the incredible Dr Maya Angelou.

As she said, “If you don’t like something, change it. If you can’t change it, change your attitude.”

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Living well with corporate capture. What is the future of the Prime Minister's Dementia Challenge?

“Citizens have become consumers with status proportional to purchasing power, and former public spaces have been enclosed and transformed into private malls for shopping as recreation or “therapy.” Step by step, private companies, dedicated to enriching their owners, take over the core functions of the state. This process, which has profound implications for health policy, is promoted by politicians proclaiming an “ideology” of shrinking the state to the absolute minimum. These politicians envisage replacing almost all public service provision through outsourcing and other forms of privatisation such as “right to provide” management buyouts. This ambition extends far beyond health and social care, reaching even to policing and the armed forces.”

And so write Jennifer Mindell, Lucy Reynolds and Martin McKee recently about ‘corporate capture’ in the British Medical Journal.

Alistair Burns, England’s clinical lead on dementia, recently concluded a presentation on the clinical network for London with the following slide:

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Alistair clearly does not mean ‘Dementia is everyone’s business’ in the “corporate capture” sense. Instead, he is presumably drawing attention to initiatives such as Brighton and Sussex Medical School’s initiative to promote dementia awareness at all levels of an organisation (and society).

 

Microsoft PowerPoint - H1 Dementia Care Event

 

The comparison with diabetes is for me interesting in that I think of living well with diabetes, post diagnosis, as conceptually similar to living well with dementia, in the sense that living well with a long term condition is a way of life. And with good control, it’s possible for some people to avoid hospital, becoming patients, when care in the community would be preferred for a number of clinical reasons. Where I feel the comparison falls flat is that I do not think that it is possible to measure outcomes for living well with dementia easily. Sure, I have writen on metrics used to measure living well with dementia, drawing on the work of Sube Banerjee, Alistair’s predecessor. It might be possible to correlate good control with a blood test value such as the HBA1c, and it steers the reward mechanism of the NHS for rewarding clinicians for failure of management (e.g. laser treatment in the eye, foot amputation, renal dialysis), but the comparison needs some clinical expertise to be pulled off properly. The issue of breaking down ‘barriers’ between primary and secondary care is an urgent issue, and ‘whole person care’ or ‘integrated care’ may or may not help to facilitate that. But a future government must not get too enmeshed in sloganising if it means forgetting basic requirements of foot soldiers on the ground, such as specialist dementia nurses including Dementia UK’s ‘Admiral nurses’.

But the question of who gives the correct diagnosis of dementia, or even verifies it, won’t go away.

Having done Dementia Friends myself, a Public Health England the Alzheimer’s Society joint initiative, I feel the initiative is extremely well executed from an operational level. I think it’s pushing it for a member of the public to think that an old and doddering lady crossing the lady might have dementia and requires help, as medicalising ageing into dementia is a dangerous route to take. The £2.4 million programme is funded by the Social Fund and the Department of Health. Public Health England are planning to undertake an evaluation of the Dementia Friends Campaign launched on 7 May 2014, which will include tracking data and prevention message testing.

There are a number of important clinical points here. There are crucial questions as to whether persons themselves with a possible diagnosis, friends and/or families themselves want a diagnosis of dementia. A diagnosis of dementia in anyone’s book is a life-changing event. The concerns of the medical profession have been effectively rehearsed.  Notwithstanding, the ambition that, by 2015, two thirds of the estimated number of people with dementia should have a diagnosis, with appropriate post diagnostic support has been agreed with NHS England.  To support GPs and other primary care staff, a Dementia Roadmap web-based tool has been commissioned by the Department of Health from the Royal College of General Practitioners. The roadmap has now been officially launched, and will provide a framework that local areas can use to provide local information about dementia from health, social care and the third sector to assist primary care staff to more effectively support patients, families and carers from the time of diagnosis and beyond. Feedback from relevant stakeholders will be most interesting.

People with dementia need to be followed up across a period of time for a diagnosis of dementia to be reliably made, and ‘in the right hands’, i.e. of a specialist dementia service. Whilst NHS England are working with those areas with the longest waits, with the aim of ensuring that anyone with suspected dementia will not have an excessive wait for a timely assessment, there has to be monitoring of who does that timely assessment and whether it produces an accurate result. At an extreme example, clinical diagnoses of rarer dementias, particularly younger onset, can only be done effectively by senior physicians with reference to two clinical histories, two clinical examinations, neuroimaging (e.g. CT, MRI, or even fMRI or SPECT), lumbar puncture/cerebrospinal fluid (if not contraindicated), cognitive psychology, EEG, or even – extremely rarely – a brain biopsy. But this would be to propose an Aunt Sally argument – many possible cases of dementia can be tackled by primary care with appropriate testing perhaps in the future, and certainly adequate resources will need to be put into primary care for training of the workforce. Or else, it is literally a ‘something for nothing’ approach.  Some people have ‘mild cognitive impairment’ instead, and will never progress to dementia.There are 149,186 dementia friends currently. This number is rapidly increasing. The goal is one million.Furthermore, there are many people given a diagnosis of dementia while alive who never have it post mortem. And the diagnosis can only be definitively made post mortem. Seth Love’s brilliant research (and he is an ‘Ambassador’ to the Alzheimer’s BRACE charity) is a testament to this. Anyway, NHS England and the Department of Health are working with the Royal College of Psychiatrists to encourage more Memory Services to become accredited.

And when is screening not officially screening? This continues to require definition in England’s policy. The original Wilson and Jungner (1968) principles have appear to have become muffled in translation. The CQUIN has led to over 4,000 referrals a month, but this will only contribute to improving diagnosis rates for dementia if this is not producing a tidal wave of false positives. For quarter 3 2013/14, 83% of admitted patients were initially assessed for potential dementia. Of those assessed and found as potentially having dementia, 89% were further assessed. And of those diagnosed as potentially having dementia, 86% were referred on to specialist services. But we do need the final figure. This policy plank for me will also go back to the issue of whether policy is putting sufficient resources into the diagnostic process and beyond. Stories of people being landed with a diagnosis out of nowhere and given not much further information than an information pack are all too common. A well designed system would have counselling before the diagnosis, during the diagnosis, and after the diagnosis.

Ideally, an appointed advisor would then see to continuity of care, allowing persons with dementia to be able to feel confident about telling their diagnosis to friends and/or family. The advisor would ideally then give impartial advice on social determinants of health, such as housing or education. Policy may be slowly moving in this direction. In April 2014 NHS England published a new Dementia Directed Enhanced Service (DES) for take up by GPs to reward practices for facilitating timely diagnosis and support for people with dementia. Patients who have a diagnosis of dementia will be offered an extended appointment to develop a care plan. The care planning discussion will focus on their physical and mental health and social needs, which will include referral and signposting to local support services. From 10 signatories in March 2012, to date, there are now 173 organisations representing nearly 3,000 care services committed to delivering high quality, personalised care to people with dementia and their carers.

But all this requires money and skill. There is no quick fix.

The areas of action for the Prime Minister’s Dementia Challenge are: dementia friendly communities, health and care and improving research.

In November 2012, The Secretary of State for Health announced a £50 million dementia-friendly environments capital investment fund to support the NHS and social care to create dementia-friendly environments. The term ‘dementia friendly communities’ is intrinsically difficult, for reasons I have previously tried to introduce. A concern must be the ideology behind the introduction of this policy in this jurisdiction. The emphasis has been very much on making businesses ‘business friendly’, which is of a plausible raison d’être in itself.  This, arguably, is reflected in the list of chief stakeholders of the dementia friendly communities champion group.

Dementia friendly communities board

It happens to fit very nicely with the Big Society and the ‘Nudge’ narrative of the current government. But it sits uneasy with the idea that it is in fact a manifestation of a small state which bears little responsibility apart from overseeing at an arm’s length a free market. The critical test is whether this policy plank might have improved NHS care. 42 NHS and 74 Social Care National pilot schemes were approved in June 2013 as national pilots. Most of the projects have now been completed, and they will be evaluated by a team of researchers at Loughborough University over the coming months. The evaluation will provide knowledge and evidence about those aspects of the physical care environment which can be used to provide improved care provision for people with dementia, their families and carers. But the policy has had some very exciting successes: for example the ‘Sporting Memories Network’, an approach based on the neural re-activation of sporting autobiographical memories, recently scooped top prize for national initiative in the Alzheimer’s Society Dementia Friendly Communities Awards 2014.

And meanwhile, the care system in England is on its knees. Stories of drastic underfunding of the care system are extremely common now. An army of millions of unpaid family carers are left propping up a system which barely works. There appears to be little interest in guiding these people, with psychological, financial and/or legal burdens of their own, to reassure them that all their hard work is delivering an extraordinary level of person-centred care.

But this for me was an inevitable consequence of ‘corporate capture’. The G8 World Dementia Council does not have any representatives of people with dementia or carers.

That is why ‘Living well with dementia’ is an important research strand, and hopefully one which Prof Martin Rossor and colleagues  at NIHR for dementia research will give due attention to in due course. But all too readily research into innovations, ambient assisted living, design of the ward, dementia friendly communities, assistive technology, and advocacy play second fiddle to the endless song of Big Pharma, touting how a ‘cure’ for dementia is just around the corner. Yet again.

So what’s the solution?

The answer lies, I feel, in particularly what happens in the next year and beyond.

The Prime Minister’s challenge on dementia was developed as a successor to the National Dementia Strategy, with the challenge of delivering major improvements in dementia care, support and research. It runs until March 2015. Preparatory work to produce a successor to the Challenge from the Department of Health (of England) is now underway in order that all the stakeholders can fully understand progress so far and identify those areas where more needs to be done. The Department of Health have therefore commissioned an independent assessment of progress on dementia since 2009.

There are a number of other important pieces of work that are underway, which will provide information and evidence about progress and gaps. For example, according to the Department of Health, the All Party Parliamentary Group on Dementia chaired by The Baroness Sally Greengross OBE are producing a report focused on the National Dementia Strategy, and the Alzheimer’s Society has commissioned Deloitte to assess progress and in the autumn will be publishing new prevalence data. Indeed the corporate entity known as Deloitte Access Australia (a different set of management consultants in the private sector) produced in September 2011 a report on prevalence of dementia estimates in Australia. Deloitte themselves have an impressive, varied output regarding dementia. But of course they are not interested in dementia solely. “Deloitte” is the brand under which tens of thousands of dedicated professionals in independent firms throughout the world collaborate to provide audit, consulting, financial advisory, risk management, tax, and related services to select clients.

But also it appears that the Alzheimer’s Society, working with NHS England, has commissioned the London School of Economics to undertake a review into the accuracy of dementia prevalence data. The updated data is expected to be published in Autumn 2014. Apparently, once all this work has been concluded a decision will be made on the focus and aims of the successor to the PM’s challenge.

The current Coalition government has been much criticised in parts of the non-mainstream media for the representation of corporate private interests in the Health and Social Care Act (2012).

I believe people who are interested in dementia, including persons with dementia, caseworkers and academics, should make their opinions known to the APPG in a structured articulate way in time. I think not much will be achieved through the pages of the medical newspapers. And only time will tell whether the new dementia strategy will emerge in time before the next general election in England, to be held on May 7th 2015. However, even the most ardent critics will ultimately. The present Government should be congratulated for having made such a massive effort in educating the country about dementia, which is a necessary first step towards overcoming stigma and discrimination. The Alzheimer’s Society has impressively delivered its part of it, it appears, but future policy will benefit from much more ‘aggressive inclusion’ of other larger stakeholders (e.g. the Joseph Rowntree Foundation, Dementia UK) and smaller stakeholders.

And special thanks to Alistair Burns, England’s clinical lead for dementia, a Chair at Manchester, and much more.

It could be a case of: all change please. But a huge amount has been done.

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An explanation for sporting memories can be found in the "bookcase analogy", featured in the 'Dementia Friends' initiative

One amazing phenomenon is that it’s possible to stimulate memories in people living with dementia by the presentation of football memorabilia, as described by Rachel Doeg here.

The transformation is quite remarkable: “reeling off expert knowledge and sharing collective memories that bring laughter and camaraderie to the group,and a boost to their self-esteem.”

“Bill’s story” is another brilliant example from “Sporting Memories“:

 

“Sporting memories” was established to explore the stimulation of living well in people with dementia, through conversations and reminiscence.

The Dementia Friends programme supports people who want better to understand all the implications of the condition. Last week saw celebrities and people living with dementia teaming up with the Dementia Friends Campaign to encourage even more of us to sign up. It is hoped that one million will be recruited by 2015.

One of the ‘talking points’ in ‘Dementia Friends’ might “the bookshelf analogy of Alzheimer’s Disease”.

This video taken from the “Dementia Partnerships” website shows Natalie Rodriguez, Dementia Friends Champion, using this analogy to describe how dementia may affect a person.

This simple explanation, orginally devised by Dr Gemma Jones, can be helpful for Dementia Friends Champions to explain dementia to others. A full description of it is given here.

 

 

The usual explanation of the early features of Alzheimer’s disease using the ‘bookcase analogy’

In this analogy, the brain has a number of ‘bookcases’ which store a number of memories, such as memory for events about the world, memory for sensory associations, or emotional memory, to name but a few.

Let’s now focus on the memory for events about the world bookcase.

The top shelves contain more recent memories, and, as you go down the bookshelf, more old memories are stored.

Bookcase

 

When you jog this memory shelf, the books on the top may wiggle a bit, causing minor forgetfulness about recent events, such as where you put your keys.

As you jog it a bit more, the books on the top shelf may fall off altogether, making it impossible to learn new stuff and retain stuff for a short period of time.

The bottom shelves of the short memory bookcase remain unperturbed.

The jogging of this memory for events about the world bookcase is equivalent to what happens in early Alzheimer’s disease, when something goes wrong in the top shelves only.

The top shelves correspond to the hippocampus part of the brain – it’s near the ear, and so called  as it looks like a sea-horse. That’s where disease tends to happen first in Alzheimer’s disease.

So you can see what happens overall. In the early stages of Alzheimer’s disease, a common cause of dementia, problems in short-term memory for events about the world can be profound, while long-term memories around the world are relatively infact.

As they correspond to different bookcases altogether, sensory and emotional memory are left relatively intact.

 

How the ‘bookcase analogy’ can be used to explain the phenomenon of “sporting memories”

 

I haven’t mentioned another bookcase altogether. This is a memory of events about yourself – so-called “autobiographical memory” – and this is held in a part of the brain by the eye (the ventromedial subgenual cortex).

There’s a very good review from a major scientific journal, called “The role of the ventromedial prefrontal cortex in memory consolidation” by Ingrid L.C. Nieuwenhuisa and Atsuko Takashima published recently in 2011.

Autobiographical memories, such as sporting matches, are first formed in the hipppocampus, and they then get dispatched to a totally different part of the brain, the ventromedial/subgenual cortex as these memories become “consolidated”.

memory shifts

In other words, books can come from the events around the world bookcase, but while this is wobbling the autobiographical bookshelf is unscathed.

The crazy thing though is that the intact ventromedial prefrontal cortex is also connected with the intact amygdala in early Alzheimer’s disease, which means the autobiographical bookcase can arouse emotional memories in that bookshelf.

circuitry

 

Sporting memories and “dementia friendly communities”

It is also a nominee under the category “National Initiative” in the Alzheimer’s Society first Dementia Friendly Awards, sponsored by Lloyds Banking Group and supported by The Telegraph, the winners of which will be announced on May 20. The awards recognise communities, organisations and individuals that have helped to make their area more dementia-friendly.

 

 The awards shortlist is at alzheimers.org.uk/dementiafriendlyawards

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