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Writing my book ‘Living better with dementia: champions for enhanced dementia friendly communities’ has been a real eye opener for me.
I think it’s terribly easy to carp from the sidelines about the ‘dementia friendly communities’ policy as implemented in England, but England is in fact helping to lead the way with this policy. ‘Dementia friendly communities’ is a policy which has a strong global backing, with links to the World Health Organisation’s “Age friendly cities”.
The WHO “Age Friendly Cities” recognised that there are basic design features of an urban city, wherever in the world, which might make living in it much easier; such as ‘inclusive design’ which is accessible to people.
Dementia is not just about ageing, so it is a challenge to think about what a dementia friendly ‘community’ might be. It’s important for this to be a ‘community’ not just a city, as it is recognised that around the world there are remote or rural areas where people who’ve been diagnosed need to feel welcomed.
When I went up to the Alzheimer’s Europe conference in Glasgow earlier this year, I had the good luck to meet Ann Pascoe in the hôtel where we weree having her fringe events. She has been doing groundbreaking work on rural dementia friendly communities in Scotland. I subsequently met one of team doing great work on dementia friendly rural communities in Wiltshire at the Dementia Action Alliance meeting the other day.
I met Toby Williamson from the Mental Health Foundation too at Glasgow, as well as Grainne McKettrick who first started her work on equality and equity at the Alzheimer’s Society in Scotland. I am delighted that Grainne has allowed me to quote from her speech in my one of my book chapters for the book I am submitting.
That chapter is on reconciling a rights-based approach promoting dignity and autonomy, with other mechanisms to promote ‘choice’, in a more consumerist way, through ‘personal budgets’ or ‘self directed support’.
Grainne remarked in her email to me yesterday how she had been really impressed with how fast the policy stream for this has taken pace in the last few years.
I think this is indeed worth noting for England. In the last fee years, we have seen a number of aspects suddenly converge at once, which have made a really big impact: these include the recognition of the UK government of the UN Convention on rights for disabled citizens (a few years ago), the Equality Act (2010), “dementia friendly communities” and the Prime Minister’s Dementia Challenge.
A welcome move will be there will be some sort of ‘standard setting’ for dementia friendly communities. It is far too easy for some communities to claim that they are ‘dementia friendly communities’, for their own promotion, rather than meeting an accepted reasonable level of requirements.
I think it’s great that people living with dementia can expect now a better level of service in the high street, say from a high street bank. But it’s important that this policy doesn’t raise inappropriate expectations.
But it is also true that this policy should raise expectations on employers dealing with people of a certain age, say in their early 50s, who might be developing a dementia in the younger age group, such as diffuse levy Body disease, vascular dementia or Alzheimer’s disease.
It’s a legal obligation for employers to make ‘reasonable adjustments’ against anyone with a ‘protected characteristic'; and dementia is one such characteristic, coming under the disability umbrella.
So why are there not many test cases for unfair dismissal for people who are sacked ultimately because of developing dementia? I have given this some considerable thought in the last few months since meeting Toby Williamson, and I reckon the answer is predominantly two fold.
Firstly, I don’t think it’s thought to be certain that the problems faced by an employee is due to a dementia at the time of ‘sacking’ with an element of mutual collusion that neither party is hoping for the likelihood of such a diagnosis. There are also intrinsic problems in England in areas of the country for achieving the diagnosis in a prompt manner. Prof Sube Banerjee warned recently how policy should not promote ‘high quantity, low quality’ of dementia diagnoses, on the other hand.
Secondly, I don’t think people are also aware of their legal rights under discrimination law, and, even so, don’t wish to take their employer to court for fear of losing any retirement packages or loss of goodwill, or inherent problems in access to justice. In England, under the current government, the legal aid budget has been slashed due to the Legal Aid and Sentencing and Punishment of Offenders Act (2012).
And another reason is that whilst we may have been promoting dementia friendly communities encouraging companies to cater for their customers living with dementia we haven’t been so keen to push ‘dementia friendliness’, a responsibility (rather obligation) of the employer.
There is, though, encouraging progress being made in other jurisdictions. I think we could no worse than to take a leaf out of the consumer action group of the Alzheimer’s Australia set up in England in pursuing this policy further.
‘Friendly’ is one thing, but communities need to ensure people with dementia have the law working for them
Kate Swaffer (2014) has written about her perception of the receipt of a diagnosis of dementia. The account given by Swaffer is widely held, it turns out.
“The cost of this Prescribed Disengagement™ sets up people with dementia to become victims or sufferers, their partners to eventually start behaving like martyrs and to take over for the person diagnosed. It sets up people with dementia to believe there is no hope, there are no strategies to manage the symptoms of dementia, and more importantly, that it’s not worthwhile trying to find any. It negatively impacts self-esteem, a person’s finances, relationships and the ability to see any sort of positive future. Having dementia does not mean you have to give up living a pre-diagnosis life, nor living beyond your diagnosis. For some, following a diagnosis of dementia, their whole life becomes about dementia and many seem to forget to keep living the other parts of their lives. This is the negative effect of the Prescribed Disengagement™.
Prescribed Disengagement™ also takes away any power or control of the person diagnosed, giving it all to the family carers and service providers. It is unhealthy and wrong. Dementia is the only terminal illness I know of where people are told to go home and give up, rather than to fight for their lives. Prescribing disengagement also lowers a person’s own expectations about how they can live, and it lowers others’ expectation about how we can function and live, including employers, health care professionals and service providers.”
Under international law, the Convention on the Rights of Persons with Disabilities exists to protect citizens with disability.
a) of the Preamble states:
“The States Parties to the present Convention,
- Recalling the principles proclaimed in the Charter of the United Nations which recognize the inherent dignity and worth and the equal and inalienable rights of all members of the human family as the foundation of freedom, justice and peace in the world,”
The Equality Act (2010) in England and Wales makes discrimination against persons living with disabilities unlawful. Dementia is a disability.
On 6 December 2014, the BBC news website ran article with the title “Disabled people’s access to High Street ‘shocking’, audit finds”.
According to the report, accessibility experts DisabledGo visited all of the 30,000 venues in person to assess them, in the largest ever audit of its kind in the UK. They found a fifth of shops had no wheelchair access, only 15% of restaurants and shops had hearing loops and three quarters of restaurants did not cater for those with visual impairments.
If we are shocked about this lack of access for people who are physically disabled, we should be equally shocked for lack of accessibility for people with cognitive or behavioural problems from living with dementia.
Swaffer in her analysis goes onto compare the medical and the social responses to the event that is the disclosure of the dementia diagnosis.
“Misguided and preconceived misconceptions about the symptoms of dementia are used to support telling us to give up living our pre-diagnosis lives. Instead, the recognition of the symptoms as disabilities would assist with a more equitable and dementia-friendly experience for the person with dementia after diagnosis. In contrast to the medical model, the disAbility model of care is positive and supports continued engagement with our prediagnosis lives. “
This picture is from: here.
For the sake of parity of esteem, in other words not treating mental health as inferior to physical health, we need to apply the same rigour for ‘reasonable adjustments’ for cognitive or behavioural interventions as for physical ones.
Equality law recognises that bringing about equality for disabled people may mean changing the way in which employment is structured, the removal of physical barriers and/or providing extra support for a disabled worker (see, for example, the Equality and Human Rights Commission website, 2014).
Coincidentally, yesterday, the British Psychological Society (2014) launched its new publication on care pathways for early stage dementia and psychological interventions in early dementia.
Here’s Agnes by their stall in Glasgow (Scotland).
In other words, buildings should have adequate signage for people living with dementia of the Alzheimer Type. It is beyond reasonable doubt that early dementia of the Alzheimer type is characterised by problems in learning and memory, including in spatial navigation (Serino and Riva, 2013).
It is also beyond reasonable doubt that people with such cognitive disabilities will benefit from specialist design as a reasonable adjustment (Habell, 2013).
The recognition process for dementia friendly communities is currently being developed by the Alzheimer’s Society (2013). I feel itwill be a valuable opportunity for people to demonstrate that they are not only obeying the letter of the law, but they are also entering into the spirit of it.
Alzheimer’s Society (2014) Recognition process for dementia friendly communities. http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=2136
BBC News website (6 December 2014). “Disabled people’s access to High Street ‘shocking’, audit finds” http://www.bbc.co.uk/news/uk-politics-30342957
British Psychological Society. 3 Days To Go to Launch of ‘Clinical Psychology in Early Stage Dementia Care Pathway’ and ‘A Guide to Psychosocial Interventions in Dementia’ (1 December 2014) http://www.psige.org/news/33/3+Days+To+Go+to+Launch+of+%27Clinical+Psychology+in+Early+Stage+Dementia+Care+Pathway%27+and+%27A+Guide+to+Psychosocial+Interventions+in+Dementia%27
Equality and human rights commission. (2014) Workplace adjustments. http://www.equalityhumanrights.com/private-and-public-sector-guidance/employing-people/work-place-adjustments
Habell M. Specialised design for dementia. Perspect Public Health. 2013 May;133(3):151-7. doi: 10.1177/1757913912444803. Epub 2012 Jun 22.
Serino S, Riva G. Getting lost in Alzheimer’s disease: a break in the mental frame syncing. Med Hypotheses. 2013 Apr;80(4):416-21. doi: 10.1016/j.mehy.2012.12.031. Epub 2013 Jan 29.
Swaffer, K. (2014) Reinvesting in life is the best prescription (1 December 2014) Australian Journal of Dementia Care, http://journalofdementiacare.com/reinvesting-in-life-is-the-best-prescription/
UN Convention on the Rights of Persons with Disabilities, http://www.un.org/disabilities/convention/conventionfull.shtml
Ed Miliband, most people agree, is set to be the leader of the largest party at Westminster next year at least. This would give him overall charge of the legislature and the executive on 8 May 2015.
He has also pledged to produce 20,000 extra nurses, though talk is cheap. George Osborne has failed on virtually all ambitions that were set for the economic performance of the current Government. The Conservative-Liberal Democrat coalition therefore bequeath the next Government with a society with a terrible frail economy.
This UK economy is essentially a bargain basement one. It is easy to spot the major fault with ‘the record number of jobs’ meme, as the actual till receipt income is very low. And yet the Conservative want to pay for tax cuts – we’ve gone from an over bloated state to an under nourished one.
I had the enormous pleasure, with two other Dementia Friends Champions Chris Roberts and Jayne Goodrick, of giving a Dementia Friends information session at my law school yesterday. I can’t praise enough the amount of support we were given from the people who run Dementia Friends.
Forgive my photography. I am no David Bailey*. We actually had a good turnout, but I managed to capture the part of the audience which was very lean. Chris Roberts (@mason4233) lives well with a mixed type of dementia, thought to be a mixed Alzheimer’s disease and vascular dementia.
Somebody came up to me at the end of the audience and said, “It was absolutely brilliant as it was just incredible to see for my own eyes somebody living well with dementia.”
The “Dementia Friends” initiative has been a successful one. From the Alzheimer’s Society, and supported at a distance by Public Health England, it is modelled on the Japanese ‘caravan befriending’ movement. Its aim in policy terms was to break down the stigma, prejudice and discrimination which can happen against people living with dementia. These factors can contribute to the social isolation often experienced by people on receipt of a probable diagnosis.
“Dementia Friends” has been brilliant for myth busting, with actual facts about dementia too.
Recently, Kate Swaffer (@KateSwaffer), leading international advocate living well with dementia, and working with Alzheimer’s Australia, leading for the Dementia Alliance International, met Dennis Gillings this week in a small group of people for dinner. Gillings is the newly appointed World Dementia Envoy.
For reasons which are completely inexplicable, there is no established substantial representation on that panel from the communities of people living with dementia or caregivers, although Hillary Doxford was documented in the Communiqué of the last meeting just gone.
When Dennis met Kate recently, Kate quipped, typically characteristically in a beautiful tongue-in-cheek manner, she had not ben dribbling into her soup (Kate’s blogpost here).
But “Dementia Friends” is an interesting example of a private-public initiative with a £2.4 million funding base. Had this been left entirely to ‘market forces’, it is unlikely there would have been national outreach for this unique project. Inevitably the topic in policy terms is whether the substantial cost of Dementia Friends is offset by the value of raising the profile of dementia and caregivers. Where it might fail on its outcomes, and time will tell, is how the pledges of turning communication into action are actually hard evidenced through the number of pledges (irrespective of whether it will hit its target of one million within an extended deadline of the end of 2015).
In my opinion, it has been.
Two days previously, I enjoyed being at the Methodist Central Hall for a day for the Dementia Action Alliance.
And yet it is also true that social care is on its knees.
You don’t have be a great story teller to communicate a tale of the NHS on its knees.
This is somewhat cognitively dissonant with MPs wearing their Dementia Friends badges with pride, one could argue.
I agree with Jeremy (tweet here) in that the third sector should not need to apologise for fundraising. Making a surplus for a charity is a raison d’être for a charity akin to the duty to maximise shareholder dividend for a business.
But larger charities share many operational and cultural characteristics with corporates conceivably, and therefore the principles of a good ‘corporate citizen’ could easily apply to large charities with substantial revenues.
Sube Banerjee, long time supporter of the Alzheimer’s Society, and, perhaps more significantly here, co-author of the previous 2009 English dementia strategy came to the Dementia Action Alliance table with some noteworthy criticisms of how the current strategy had been executed.
Firstly, Sube, now a Chair of dementia at the Brighton and Sussex Medical School, commented on the devaluing of the ‘cost’ of a diagnosis to £45, and commented specifically on the culture of a ‘high quantity low quality’ approach to diagnosis.
Indeed, the 2009 English dementia strategy, called ‘Living well with dementia’, refers to the need for high quality diagnosis.
And the English dementia policy as it was then, before it got taken over by the Prime Minister’s Dementia Challenge, due to expire next March 2015, also warned about the lack of post-diagnostic support.
People living with dementia, and their family members, have consistently remarked to me how they have been told by medical professions that their rôle is at the very start and very end of “the dementia journey”. They won’t be there for them in between.
We are all aware of recent findings that 9 out of 10 care homes failing to meet standards set by the regulator the Care Quality Commission, reported not just in the Daily Mail.
So there is an overwhelming sense that people with a possible diagnosis of dementia are being set up for a fall by an inadequate care system, which is disjointed, increasingly privatised, and undervalued.
One of the undesirable consequences of this bargain basement economy is the sheer undervaluing of paid carers on zero hour contracts, some not even getting any travel expenses or the national minimum wage.
This poses serious questions about us as a society. So does the lack of support we appear to be giving unpaid family caregivers, an army of which nearing a million are the backbone of the entire system.
But Jeremy’s tweet does also pose serious questions about what charities could or should fundraise for. I say this as I remember one of own interview questions to read medicine at Cambridge – which I did between 1993 and 2001 – “to what extent should charities take the place of a properly funded NHS?”
Well, this question has taken on a new twist. I do not see there to be a ‘competition’ as such between ‘dementia advisers’ of one charity and ‘specialist nurses’ from another third sector charity. I think they co-exist. ‘Dementia advisers’ are possibly more useful for the more independent parts of the support of “the dementia journey”. ‘Specialist nurses’ are pivotal at all parts, including the care part of ‘the dementia journey’.
It has struck me how not only cost effective clinical specialist nurses are, in providing proactive case management for people with dementia with personalised care plans, ‘nipping in the bud’ complications from medical conditions. I know internationally one of the campaigning for fundraising themes is the substantial co-morbidity of dementia. People living with dementia often have a plethora of other problems, such as in joints, heart or lung.
Sally Greengross has long made it been known that the post diagnostic support for dementia is not good enough. Sally Greengross is the current Chair of the All Party Parliamentary Group on dementia. Her predecessor, Jeremy Wright MP, currently the Government’s Attorney General, launched the highly successful policy here in England of an ambition to reduce the number of inappropriate prescriptions for antipsychotics predominantly in care homes.
Hospitals can be some of the worst places a person with dementia to end up in. Likewise, it shouldn’t be conceived that secondary hospital care is necessarily synonymous with someone who has ‘failed’ somehow. But, say, end of life nurses will be able to provide expert help, wherever the appropriate care setting is deemed to be for a person living with dementia (and his/her friends or family).
And it is therefore possible charities such as Dementia UK and others might be able to fill these gaps in service provision. For a start, clinical nursing specialists comprise an innovative way of delivering the dementia post-support service. And the NHS has a statutory duty to promote innovation.
However, I should say that that statutory clause (14X) on CCGs is from the much loathed Health and Social Care Act (2012), about to be repealed by the next Labour government.
It is sometimes the case innovation can be incubated in places other than the NHS, and we’ve already seen a lot of goodwill and real-life financial support for Macmillan nurses. It would be impossible now to think of palliative care for nursing in cancer to be without Macmillan nurses – and the prime contractor model could be a way of providing sustainability in critical areas of services. This is ONLY provided that the quality and cost effectiveness components are managed correctly and for the benefit of the taxpayer. The next Labour government wishes to bring out a huge systemic innovation of integrating health and care into whole person care. This is long overdue, as, for example, it is impossible in places to discharge NHS patients to social care in s timely fashion. This is not cost effective; it is insulting particularly to patients including frail old citizens who do not wish to be in hospital anyway, and do not deserve the pejorative insulting label of “bed blocker”.
I am sure Alistair (@ABurns1907), or whoever ends up predominantly penning the new English dementia strategy, will wish to give careful consideration to how this post diagnostic support can be provided. Jeremy has a point, but up to a point.
*Joke by @JayneGoodrick.
Anything can happen to anyone at any time. Despite all the best initiatives in the world, it will be unachievable to extinguish all negative perceptions about dementia. Nobody can deny the imperative for communities and society to be inclusive and accessible for people with dementia, but is no mean feat to rationalise with more individualistic approaches ranging from personal budgets, human rights and equality law responsibilities. It really is not a question of what a person can no longer do. It is an issue of what a person can currently do, and this might include, for example, unleashing of previously unwitnessed artistic and creative talents.
All jurisdictions converge on the right for a timely diagnosis and a right to timely post-diagnostic support, but political grandstanding over cures will be small change to those people currently wanting to live better with dementia. People who have received a diagnosis of dementia are not all consumers, and some do not even interact with health and care services as patients. They are all persons, however, and wish for inalienable dignity and respect. Everyone knows that the diagnosis affects not just the person with dementia,but their whole network of friends and family. There now must be a political will to do something about this, and this is not just a societal issue for the G7. Silos must be abolished; for example, in considering eating better with dementia, the emphasis can no longer be on the design of ‘finger snacks’, but responsible thought has to be put into how certain mealtime environments work (or do not work). It is utterly pointless talking about joining initiatives to encourage ‘dementia friendliness’, while words such as ‘victim’ continue to litter the mainstream press. And “leading” scientists and practitioners can unwittingly perpetuate stigma through somewhat perjorative language such as ‘wanderer’; the willful blindness to this must stop too. Living better with dementia is not just an aspiration; it is in many places legally enforceable.
Bring it on.
To argue that ‘cultural change catalysts’ can turn into inhibitors is, as quite usual for the management literature, is re-inventing the wheel.
The idea is that ‘catalysts’ in cultural change act like catalysts in chemical reactions. Exploring this analogy further, catalysts in chemical reactions do not produce more of the intended products, speed up the generation of the product, and are unaffected by the process.
I do not feel that this analogy is appropriate, on account of the three arms of the quality of what a ‘catalyst’ is.
I am unconvinced that there has been more of the “intended products”. How you measure these ‘key performance indicators’ is more of the domain of people with a management training rather than experienced practitioners or clinicians.
The number of re-tweets on Twitter is a metric of sorts, but so is the traffic to a page 3 supermodel on the internet.
In my own field, has the number of retweets of tweets containing the term ‘living well with dementia’ led to a ‘transformational change’ in what people understand to be wellbeing?
I doubt it.
Do ‘cultural change catalysts’ speed up the generation of the product?
I am not convinced about this either. In fact, I would like to propose that the #hashtag activism can put a lot of people off from participating.
The people who are put off, ironically, are exactly the sort of people this campaign was trying to embrace – people at the “edges”.
People at the “edges” will not be able to become the Chief Inspector of Social Care at the Care Quality Commission through wacky ideas on Twitter.
Conversely, they might be singled out for worth ‘keeping an eye on’ in a negative sense.
When I know of well meaning people who have been diagnosed with severe mental illness for the first time having worked in the National Health Service, this is not trivial.
Nor is the fate of whistleblowers, and the inadequacy of the Public Interest Disclosure Act (1998).
And whether “radicals” are in fact “radicals” demands proper scrutiny.
I have often marvelled at the term “shared values” of corporate glossy prospectuses. Such shared values in my experience have been used to stamp out diversity, freedom of expression, and to encourage a rigid sense of conformity.
We’ve seen a similar mathematical approach to an analysis of when ‘hipsters’ become ‘conformists’.
When people doing their job in the health and care systems take to Twitter to talk of their resentment of non-clinicians and non-practitioners talking of ‘radicalism’, you have to begin to worry.
This ‘radicalism’ is the ultimate sin for what innovation management values, in my experience.
Innovation management is, if anything, all about ‘environment sensing’ and making connections between different disciplines. If a part of your environment ‘resents’ your work, it’s time you should NOT adopt an approach of ‘there is no alternative’ and continue with #boatrockers regardless.
And my final concern?
That catalysts are unaffected through the process.
I am not entirely convinced about this, as there is scope for a two-tier system of ‘registered catalysts’ and those who are not.
Of course, business management has taken two prongs of attack latterly – promoting competitive advanced and increasing shared social value.
The increased shared value, I argue, can be so intense so as to be quite off putting.
And when the same beneficiaries are at the same events with the same awards and the same projects, with the same commissioning targets, compared to others who have not participated in ‘catalysing the transformative change’, you do really have to query whether they are genuinely unaffected by the process.
It’s sometimes hard to see the big picture in the policy of England regarding dementia.
I don’t mean this in terms of the three key policy strands of the strategy, which is currently the Prime Minister’s Dementia Challenge. This extra layer was added onto the English dementia strategy, “Living well with dementia”, from 2009-2014.
There will be a renewal of this strategy next year. We currently don’t know what Government will be in office and power in 2015. But I am hoping the overall direction of travel will be a positive one. I would say that, wouldn’t I?
There are 3 dementia challenge champion groups, each focusing on 1 of the main areas for action: driving improvements in health and care, creating dementia friendly communities and improving dementia research.
But it is in my political philosophy to encourage a pro-social approach, not a fragmented one.
I’d like to see people working together. This can all too easily be forgotten in competitive tendering for contracts.
And things can be just as competitive in the third sector as for corporates.
This is the clinical lead for dementia in England, Prof Alistair Burns, who has oversight over all these complicated issues.
But we need to have a strong focus for the public good, especially as regards looking after the interests of people living with dementia, and their closest including all caregivers. State-third sector initiatives can work brilliantly for particular outcomes, such as encouraging greater sharing of basic information about dementia, but all concerned will hopefully feel that the people whose interests we want to protect the most benefit from a plural space with many stakeholders.
There is definitely a huge amount which has been achieved in the last few years. I do definitely agree with Sally Greengross, Chair of the All Party Parliamentary Group for dementia, that we should really take stock of what has worked and what hasn’t worked so well in the last five years, in our wish to move forward.
I say this, as it has come to my attention while reviewing the current state-of-play in policy and in research that there are potentially problematic faultlines.
1. One is diagnosis.
On the one hand, some people feel that we are under diagnosing dementia, and that there are people languishing in England waiting for a diagnosis for weeks or months.
Chris Roberts, himself living with a dementia, and a greater advocate for people living with dementia, often warns that it is essential that, despite the wait, that the diagnosis is correct.
I know of someone else in the USA who has battled on for years while waiting for a diagnosis of dementia, despite having symptoms of dementia.
On the other hand, there are concerns, particularly if teams in primary care are financially incentivised for doing so, that there might be a plethora of over diagnosed cases.
The concern here is that there might be alternative interests for why such people might be diagnosed, such as being recipients of compounds from drug companies which attach to proteins in the brain, and which might be useful in diagnosing dementia.
Or we are building a ‘new model army’ of people who are ageing, but being shoehorned into the illness model because of their memory problems?
2. Another is potential ‘competition’ between dementia charities.
Essentially, all dementia charities in England want the same thing, and will need to attract an audience through various ‘unique selling points’ through that awful marketing terminology.
But in the next few years we may see commissioning arrangements change where the NHS may involve the third sector doing different complementary rôles, such as advising and providing specialist nursing, in the same contractual arrangement.
The law might force people to work together here.
3. Another is the ‘cure versus care’ schism.
This debate has accelerated in the last few years, with the perception – rightly or wrongly – that cure – in other words the drive to find a magic bullet for dementia – is vying for attention with care. This narrative has a complicated history in fact, in parallel with moves in the US which likewise have overall seen a trend towards some people wishing for a ‘smaller state’.
But claims about finding a cure for dementias have to be realistic, and, while comparisons can be made with HIV and cancer about the impact of a cure has for absolving stigma potentially, such a debate has been done incredibly carefully.
For example, attention for cures and collaboration between Pharma and ‘better regulation’ constitute a diversion of resources away from care, potentially. In the NHS strategy for England, with social care on its knees, a drive towards personalised medicine on the back of advances from the Human Genome Project can end up looking vulgar.
I’ve also seen with my own eyes how the ‘cure vs care’ schism has seen different emphases amongst different domestic and international dementia conferences, with some patently putting people with dementia in the driving seat, and some less so (arguably).
4. Another is the exact emphasis of ‘dementia friendly communities’.
It is impossible to object to the concept of inclusivity and accessibility of communities, with recognition of the needs of people living with the various dementias.
But the term itself is possibly not quite right; as Kate Swaffer says, a leading international advocate on dementia, you would never dream of ‘black friendly communities’ or ‘gay friendly communities’ as a term.
Another issue is what the precise emphasis of dementia friendly communities is: whether it is an ideological ‘nudge’ for companies and corporates to enable competitive advantage, or whether it is driven by a more universal need to enshrine human rights and equality law.
As Toby Williamson from the Mental Health Foundation mooted, the need for an employer to make reasonable adjustments for cognitive disAbility is conceptually and legally is actually the same as the need for an employer to build an access ramp for a person who is in a wheelchair and physically disabled?
There can also be a problem in who wishes to be “the dominant stakeholder”. Is it the person with dementia? Or unpaid caregiver? Or paid carer? Or professional such as CPN, physio, OT, speech and language therapist, neurologist, physician or psychiatrist? Is it a dementia adviser or specialist nurse?
If we are to learn the lessons from the Carers’ Trust/RCN “Triangle of Care”, it is essential to learn from all stakeholders in the articulation of a personalised care and support plan? I feel this is important in whole person care if we are to have such plans in place, which recognise professional pro-active clinical help, in trying to assist in avoidable admissions to hospital.
But here we have to be extremely careful. An admission to hospital or appearance at A&E should not always be sign of ‘failure’ of care in the community.
5. Yet another source of division is that we all do our own things.
This is problematic, if we do our own things. We end up being secretive about which people we’re talking to. Or which conferences we’re going to.
Or if countries don’t talk to each other, even if they have similar aims in diagnosis, and post-diagnostic care and support (including the global dementia friendly communities policy). Or if we don’t share lessons learnt (such as, possibly, the beneficial impact of treating high blood pressure on dementia prevalence in one country).
Or if certain people become figureheads in dementia. But no man is an island.
I still feel that there’s a lot more that unites us than divides us.
Anyway, I’ll leave it to people on the frontline, and in communities, much more able than me, to work out what they want.
There’s no question that there is a greater number of people who are old needing to be looked after by care and support services in England.
But dementia is not simply a disease of older people, one of the critical messages of “Dementia Friends”.
Indeed, much of the budget goes into the health and care of younger people, as health technologies, say for treating cardiovascular disease through stents, get better.
Earlier in this year, in an article for ETHOS Journal “Living well = greater wellbeing”, I argued a joined up approach would now be needed to deliver a better standard of care and support for people living well with dementia.
In 2010, the UK government became among the first countries to officially monitor people’s psychological and environmental wellbeing. Academic research and policy developments have recently converged upon the notion of ‘living well with dementia’, which transcends any political ideology. This means promoting the quality of life of any person with dementia. It views each person as a unique individual and champions his or her involvement in making decisions whenever possible.
England actually leads the way with the ground-breaking ‘first mover’ exploration by academic Tom Kitwood of ‘personhood’ in the late 1980s: “It is a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being. It implies recognition, respect and trust”.
It’s estimated that there are at least 800,000 people currently living with dementia in the UK. These individuals are likely to come into contact with a number of different people and services in an extensive network including carers (paid and unpaid, including family caregivers), care home staff, transport services, social housing, welfare and benefits and the police to name but a few.
I am, indeed, grateful for Paul Burstow MP’s excellent reply to my article.
The current Government in England has made substantial progress with policy in dementia in my opinion.
The current Care Act (2014) could not be clearer.
It is important for commissioners not to lose sight of this, and not to treat ‘living well with dementia’ not as a slogan but as a reality.
Helping people to live well has been a key aim of the current Government, and I hope future governments, perhaps implementing ‘whole person care’, will retain this strong focus.
Enabling people to live well leads to a fairer society. The value of people living with dementia for society cannot be denied either.
But people in power and influence have a rôle to play.
The Alzheimer’s Society has played its part in addressing stigma and discrimination through its successful ‘Dementia Friends’ campaign. I myself am a “Dementia Friends Champion”, and proud to run my sessions.
One of the key messages in this campaign is that ‘there is more to the person to the dementia’.
This message is currently a critical global one, across many jurisdictions. Here is friend and colleague Kate Swaffer with a huge banner in Australia to the same effect.
And dementia and loneliness already occur together all too often.
The wider community is essential. This is about compassion. It is also about the right people showing the right leadership.
But this should not just simply include household names, although the distress caused by lack of inclusion of people with dementia in high street shops cannot be underestimated.
This community must include all caregivers and professionals.
And central to this recognition of the role of the wider community is a new deal for carers.
As the number of people living with chronic conditions grows rapidly, so does the number of carers. There is a huge army in England currently consisting of selfless individuals giving of themselves to support a loved one.
According to Carers UK, family carers currently save the Government £119 billion every year.
Carers themselves need help.
And we need to make sure in the next Government that all paid caregivers are given a statutory minimum wage, which could also be a living wage.
We are a society which values footballers more than caregivers for people with dementia. This is simply abhorrent.
I thank the current Government for progress made in this direction, but more has to be done whoever holds office and power next year.
We need collectively to support the Dementia Action Alliance Carers Call to Action. By achieving the shared vision, the aim is to have positive impact on people with dementia and carers and improve their quality of life.
In the Dementia Action Alliance “Carers Call to Action”, carers of people with dementia:
- have recognition of their unique experience – ‘given the character of the illness, people with dementia deserve and need special consideration… that meet their and their caregivers needs’ (World
Alzheimer Report 2013 Journey of Caring are recognised as essential partners in care – valuing their knowledge and the support they provide to enable the person with dementia to live well
- have access to expertise in dementia care for personalised information, advice, support and co-ordination of care for the person with dementia
- have assessments and support to identify the on-going and changing needs to maintain their own health and well-being
- have confidence that they are able to access good quality care, support and respite services that are flexible, culturally appropriate, timely and provided by skilled staff for both the carer and the person for whom they care
But we do need some sort of standards, whether aspirational or regulatory, for example?
In light of the recent Stafford Hospital Scandal, an independent review was carried out, underlining irregularities in staff training. According to today’s BBC report, as of March 2015, UK care staff and assistants in care homes, hospitals, and private homes are to be required to complete a training certificate within 12 weeks of starting a new position.
The current UK stance is that there is no minimum standard of training. With over 1million care workers in the country, it came as alarming news to Care Minister, Norman Lamb, to discover that these untrained workers were completing skilled tasks normally undertaken by medical professionals such as taking bloods. He confirmed the responsibility for the certificate would “…rest with employers and I think that’s where the training responsibility should lie.”
I expect the next Government will wish to think about a register for paid carers to help the fight against neglectful care which can tragically happen. It can be hard to achieve a successful prosecution of ‘wilful neglect’, but likewise carers need to be able to do their job with dignity and without fear.
The broad consensus has been for some time “that the principles of person-centred care underpin good practice in the field of dementia care”. Their principles assert:
- the human value of people with dementia, regardless of age or cognitive impairment, and those who care for them
- the individuality of people with dementia, with their unique personality and life experiences among the influences on their response to the dementia
- the importance of the perspective of the person with dementia
- the importance of relationships and interactions with others to the person with dementia, and their potential for promoting well-being.
In a presentation called “Developing nursing in dementia care” in May 2014 influential expert Rachel Thompson outlined a “Commitment to the care of people with dementia in hospital settings”, calling for increase in specialist nurse roles –building evidence and supporting leaders.
I believe strongly this need has not gone away. Indeed, it is stronger than ever.
Thompson there mentions the SPACE principles to support good dementia care
Staff who are skilled and have time to care.
Partnership working with carers.
Assessment and early identification of dementia.
Care plans which are person centred and individualised.
Environments that are dementia-friendly.
The financial case for ‘Admiral nurses’, an innovation from Dementia UK, is compelling; see for example the recent report from the University of Southampton Centre for Innovation and Leadership in the Health Sciences.
As is the case from the academic and clinical nursing literature on the importance of proactive case management in avoiding admissions to hospital care.
Claims that nine in ten care homes and hospitals fail to provide the proper treatment are indeed astonishing. That particular Care Quality Commission review found widespread neglect, lack of care, poor training and failings in communication.
In the same way there can be enormous disparity between a ‘bad’ and ‘good’ care home, there can be a subtle difference between a ‘very good’ and a ‘superb’ care home.
We, one day, need to be able to celebrate the ‘outstanding’ in care homes: for example, person-centred activities or environment generally might make all the difference?
The next Government, whoever it is, will need to have the confidence to implement an organic, stakeholder-driven systemic innovation in dementia.
I have long felt that the health and care services need more than a minimum ‘protected funding’. As Roy Lilley, experienced health commentator, remarks, ‘more effort can be put into weighing the pig than actually fattening it’.
This is the danger we run if we do not place adequate resources into service provision and training.
However, even within these domains, I believe that innovation has, potentially, an important and responsible part to play (as indeed I argued in the Health Services Journal this year).
There is no question that money is tight.
But we need also to have a minimum in frontline services to maintain an adequate standard of care, as indeed is supposed to be enforced from the regulation of all clinical professions.
It is easy to jump on a ‘person-centre care’ bandwagon, but all too easily this can turn into selling courses and products for person-centred care.
Putting the person at the heart of how you behave with a person with dementia does not need to cost money. Tom Kitwood articulated it brilliantly.
But, whatever the budget constraints of the health and care and future, I believe personhood should be pivotal for living well with dementia.
This should include the whole person.
If we involve people living with dementia in the design of research and services, I feel, a lot of my concerns will be addressed. The ‘Dementia Without Walls’ project from the Joseph Rowntree Foundation, in collaboration with other stakeholders, has truly been outstanding, for example.
I am grateful to the current Government for taking us a long way down the journey. But we’ve only just begun.
There has been in recent years a developing cross-party consensus on the ‘personalisation agenda’ in health and care, despite a growing army of serious critics. Individualism however co-exists in policy with ‘collective spirit’, the latter for example most notably in the policy plank known as “dementia friendly communities”.
People helping each other is a good thing. And this is, of course, motherhood and apple pie stuff.
For example, Vissier and colleagues (2008) found, in their investigation, that only staff members who received peer support reported greater skills and knowledge, consistent with previous research findings demonstrating that effective peer support for practitioners can be very useful (Edberg and Hallberg, 2001).
It has also been argued that it can be helpful to prepare for “possible personal and emotional responses in conducting clinical research in dementia”, for instance by ensuring that peer support or supervision are available (Ablitt, Jones and Muers, 2009).
The opening paragraph of a paper looking at ‘support groups’ states openly that it did not wish to look at the issue of the composition of support groups in their study (Snyder, Jenkins and Joosten, 2007):
This survey did not attempt to determine who is appropriate for a support group or who may or may not benefit. Indeed, the study sample is biased by the sole inclusion of those who volunteer to attend a sup- port group and continue participation in the group because of some presumed positive experience. This survey does, however, provide insight into why participants continue to attend their group and what aspects of the experience are most valuable.
It is totally unsurprising that the group that has been researched the most comprehensively in peer-peer support comprises caregivers (e.g. Greenwood et al., 2013), although there has been excellent research recently published on volunteering mentoring schemes (Smith and Greenwood, 2014).
We have all seen the hyperbolic claims of wishing to improve global research.
For example, Alzheimer’s Research UK earlier this year made the following point.
The G8 Dementia Summit in December 2013 was effective at galvanising the international community and promising clear and decisive action to tackle dementia. The Summit saw international leaders launch the ‘Global Action Against Dementia’ initiative with the stated the aim of finding a disease modifying treatment or cure by 2025.
And, yes, a lot of money does get pumped into activity which is cellular-related.
But men are not simply collections cells in Petri dishes.
I was immediately attracted the other day to a Facebook group called the “Young Onset Dementia Group”. It’s here.
The Dementia Alliance International (DAI) is a non-profit group of people with dementia that seeks to represent, support, and educate others living with the disease. DAI provides an international and unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life for people with dementia.
The DAI gave a talk at the Alzheimer’s Disease International conference held in Puerto Rico this year May 1-4 2014. Their slides are helpfully uploaded here.
Online support groups have become a formidable force. Such “self-help groups” moderated by people with dementia and others; there are no caregivers. They can be an alternative to local support groups that don’t meet their needs, or in absence of a local group. Increasingly, people with dementia turning to social media to connect with one another.
Here is one experience from this group:
With just a couple of days to go, it gives, for example, details of a survey by the National Health and Medical Research Council. They looking for input from people diagnosed with dementia as well as care providers, medical practitioners, family and friends. If you have a few minutes spare and you’re Australian, please complete their survey because telling them what matters to you is so important.
Kate Swaffer (@KateSwaffer) has written about it here. Kate, of course, will be known to very many of you as a champion of change in Australia – and around the world, living well with dementia as a ‘consumer champion, the first ever consultant living with dementia appointed by the influential charity Alzheimer’s Australia.
Kate is well known for her campaigning for issues which people living with dementia wish to lead on. She is heavily AGAINST tokenistic involvement, as her powerful article on stigma and dementia-friendly communities in the prestigious Dementia Journal recently illustrates.
Every month the DAI meet for “Café Le Brain” – an online Memory Cafe that uses video conferencing technology to bring people together from far away. Together, they enjoy conversation, new ideas, support, and some fun. People living with and without the symptoms of dementia are welcome to attend.
The date of the next meeting is Wednesday, November 19, 2014, with a start time: 1 p.m. in Adelaide, Australia; 12:30 p.m. in Brisbane; 10:30 a.m. in Perth; 1:30 p.m. in Sydney; 11:30 a.m. in Tokyo.
If you’re eligible to join, please go to their EventBrite page here.
The Café runs for approximately 90 minutes. To find out the start time in your city, click here. The hosts of that Café will be, on this occasion, Kate Swaffer, Secretary of Dementia Alliance International, Mick Carmody and Gayle Harris, Dementia Alliance International members.
In all honesty, however, it has struck me how there are peer-support groups, fairly well researched (but not extensively researched), where the peers are Doctors or caregivers; but there is virtually no published research on people living with dementia peer mentoring other people living with dementia. This is of course a complete travesty.
For a start, large corporate-like charities in dementia are pump priming lots of money every day into glossy reports on loneliness. And yet the money that goes into high quality in living well with dementia sees this discipline as a very impoverished relation while the never-ending searching for cures that don’t work continue.
But peer support for people living well with dementia is important.
Such networks have worked particularly well for people living with young onset dementia. A number of well known groups are helpfully listed on a “Young Onset Dementia UK” website page.
These networks are not new, but operational difficulties in ownership of such groups have long been a problem. Such groups can easily be ‘harvested’ by people not living with dementia. They are ripe pickings, for example, by large corporate-like charities, and indeed Big Pharma. Notwithstanding that, there has been a long and distinguished past for example the “Dementia Advocacy and Support Network International” or DASNI).
Chris Roberts (@mason4233), after a protracted diagnostic experience, was eventually given a diagnosis of mixed dementia. Chris continues to share his observations of that experience of diagnosis itself in public, which has been of huge interest not only to others who’ve found themselves ‘in the same boat’. But this experience should also shame the medical profession into making the process of disclosure of a possible diagnosis of dementia much better than it currently appears to be from many service users of the health service.
And Chris mentions here the improvement in his own wellbeing from participation in “Dementia Friends”, an initiative where Chris gives information sessions on what dementia is to all members of the public; and, also, Chris speaks fondly of his participation in “Dementia Mentors”, a peer support online forum for people living with dementia, as well as his involvement with the Dementia Alliance International, where he is indeed a Board Member.
Both these videos were filmed by me at the recent Alzheimer’s BRACE event, “Hope for the future”, which took place in Bristol earlier last week.
I feel it is likely there is going to be much interest in peer support groups for people living well with dementia, whether corporate-like charities wish to research it or not. It’s going to be essential that the research field doesn’t compartmentalise themselves into silos. For example, a open paper entitled ‘Personalisation vs friendsourcing’ from makes for very interesting reading:
“When information is known only to friends in a social network, traditional crowdsourcing mecha- nisms struggle to motivate a large enough user population and to ensure accuracy of the collected information. We thus introduce friendsourcing, a form of crowdsourcing aimed at collecting accurate information available only to a small, socially-connected group of individuals. Our approach to friendsourcing is to design socially enjoyable interactions that produce the desired information as a side effect.”
Ablitt A, Jones GV, Muers J. Living with dementia: a systematic review of the influence of relationship factors. Aging Ment Health. 2009 Jul;13(4):497-511. doi: 10.1080/13607860902774436.
Edberg, A., & Hallberg, I. R. (2001). Actions seen as demanding in patients with severe dementia during one year of intervention: Comparison with controls. International Journal of Nursing Studies, 38, 271–285.
Greenwood N, Habibi R, Mackenzie A, Drennan V, Easton N. Peer support for carers: a qualitative investigation of the experiences of carers and peer volunteers. Am J Alzheimers Dis Other Demen. 2013 Sep;28(6):617-26. doi: 10.1177/1533317513494449. Epub 2013 Jun 30.
Smith R, Greenwood N. The impact of volunteer mentoring schemes on carers of people with dementia and volunteer mentors: a systematic review. Am J Alzheimers Dis Other Demen. 2014 Feb;29(1):8-17. doi: 10.1177/1533317513505135. Epub 2013 Oct 1.
Snyder L, Jenkins C, Joosten L. Effectiveness of support groups for people with mild to moderate Alzheimer’s disease: an evaluative survey. Am J Alzheimers Dis Other Demen. 2007 Feb-Mar;22(1):14-9.
Visser SM, McCabe MP, Hudgson C, Buchanan G, Davison TE, George K. Managing behavioural symptoms of dementia: effectiveness of staff education and peer support. Aging Ment Health. 2008 Jan;12(1):47-55. doi: 10.1080/13607860701366012.