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The importance of the ‘lived experience’ at the Alzheimer’s Disease International conference in 2015
This year, the Alzheimer’s Disease International under Marc Wortmann has done outstanding work.
It is known for its huge impact in allowing nation states to flourish with dementia strategies
Its output is phenomenal (see for example this latest paper). I have no doubt whatsoever ADI will continue to flourish under Glenn Rees, the incoming Chair (currently Chair Elect).
I’m still very excited about the 30th International Conference of Alzheimer’s Disease International “Care, Cure and the Dementia Experience – A Global Challenge” 15-18 April, Perth, Australia, next year.
People who are very close to me will be there.
It is, also, a lovely city.
The conference website is here.
It was always emphasised that this conference would showcase the lived experiences of people with dementia. People living with dementia and caregivers were indeed encouraged to attend.
This is a part of the list of posters to be presented on Thursday 16 April 2014.
The two submitted by Chris Roberts and Truthful Kindness are shaded in a dark red.
The titles most clearly say ‘lived experience’ in the titles.
They were submitted as oral presentations, as the two people involved did not want them as poster presentations.
Indeed they did not opt for the ‘poster/oral’ option specifically for that reason.
Communication with the world about my life’s experience with dementia after diagnosis
Arts and Engagement
Living well with dementia: a lived experience
Arts and Engagement
Truthful Kindness’ affiliation is Dementia Alliance International, Iowa; it was never submitted as United Kingdom. The irony about Truthful’s intended oral presentation is that she wished to explain how people with dementia can use all sorts of media to express themselves artistically and creatively. Arts and creativity is a huge policy plank in living well with dementia internationally.
It would have been clear to any diligent reviewer of these abstracts, from their submitted biographies, that both Chris and Truthful were genuinely living well with dementia.
Here’s Chris even holding the flyer of the Dementia Alliance International group, at Glasgow earlier this year in the Alzheimer’s Europe conference on dignity and autonomy in dementia.
Chris is currently a Board member of the Dementia Alliance International.
I understand, from having spoken to one of the juniors at the Alzheimer’s Disease International, that there may even be a chance for poster presenters to give short oral presentations of their work. But I think this possibly may be worse.
It has been explained to me that the environment for the poster sessions is very off putting. It is a crowded room, with not much space for the poster itself. It is a very noisy environment, which is very distracting. In other words, this can be an environment which is potentially disadvantageous to people with early dementia who wish to present.
I am, of course, pleased that the keynote speakers for this conference include two friends of mine, and whom I admire massively, and who are living well with dementia, Kate Swaffer and Helga Rohra.
As is known, I consider Kate to be exceptional in every way.
These are two symposia from the scientific programme in which they might have appeared: “younger onset dementia” and “engaging people living with dementia”. From eyeballing the titles of these talks, I don’t see many speakers talking about their own personal lived experiences.
The only parts of the conference yet to be revealed are the ‘workshops’.
The details of the workshops are given as follows:
Day 2 Dementia Friendly Communities
Day 2 “How to” topic to be confirmed
Day 3 Clinical trials
Day 3 “How to” topic to be confirmed
Day 3 Arts and dementia
Day 4 World Alzheimer’s month
Day 4 “How to” topic to be confirmed
I am extremely honoured to be on the international advisory board for the 2015 conference. I should therefore not want to criticise the organising committees in any way for their hard work.
But I cannot be a silent bystander to this either. The whole point about viewing dementia as a cognitive or behavioural disability secondary to a brain disease is that it then comes under international and domestic laws (for example, for UN Convention for people with disabilities and the Equality Act).
Ignoring two people’s wishes to have an oral presentation, as they cannot do poster presentations, is not making reasonable adjustments for their disability, one could easily argue.
I understand that the number of people with dementia fluctuates year on year, so it can be difficult to predict the number of people with dementia who wish to present. But, even with the limited number of places for the two symposia I have cited above, there doesn’t appear to me a big representation of people living well with dementia amongst the speakers, but I could be wrong. This also seems to be the case for other symposia, notably the one on “dementia friendly communities”?
I think the Alzheimer’s Disease International conference 2015 will turn out to be a brilliant opportunity for us to meet up; and we will also get a chance to discuss ‘cure’, ‘care’ and ‘living well’.
But Richard Taylor, living himself with a dementia, is right in his presentation from last year – where is the representation of evidence of psychosocial techniques?
I’d like to ask where is the evidence looking at ‘living well’, such as GPS trackers, design of wards, design of houses, the wider built environment, incontinence, eating well, assistive technology, ambient assisted living, advocacy, and so on?
On that note, I do strongly applaud the work of ‘Dementia Alliance International‘, which is truly representing the community of people living with dementia.
We hear words such as ‘challenge’ being used all the time in relation to dementia.
Hopefully the organisers will rise to the ‘challenge’ of living up to the reasonable expectations of those people with lived experiences wanting to take part fully in the ADI conference 2015 in a format they feel most comfortable with (and which makes reasonable adjustments if required).
There has been some startling consensus over the national political settlement, including as it applies to English dementia policy.
There has generally been cross-party agreement about personal budgets, even though the ‘direction of travel’ from the UK Labour Party is to favour a ‘rights based approach’ to advance choice and control rather than merely though a financial budget.
There are good reasons not to put many eggs into the personal budget basket for dementia; these include how the range of ‘products and services’ for dementia can be in places rather underdeveloped, and the formidable potential safeguarding issues for certain vulnerable individuals living with dementia.
Another consensus is to be found in wellbeing, or living well.
I was struck by a recent recommendation from the first ever report by the All Party Parliamentary Group on Wellbeing Economics, entitled “Wellbeing in four policy areas” (published September 2014):
“Health and Wellbeing Boards should bring together public health professionals, Clinical Commissioning Groups, GPs, and other stakeholders to develop strategies for ‘whole person care’ which effectively integrate mental and physical health.”
Unknown to me, they had been doing great work even prior to the last UK election. Their ultimate aim, unsurprisingly, is to make wellbeing into a pervasive policy strand that straddles across all areas of life.
This ‘wellbeing prism‘ has impacted on various areas of policy, I suspect, in the past, like ‘The Big Society’. I have always felt that the ‘dementia friendly communities’ policy in England, heralded in the Prime Minister Dementia Challenge, although clearly having some roots in the Japanese ‘caravans’ ‘befriending’, fits well into the ‘Big Society’ ethos.
One of the problems with both ‘dementia friendly communities’ and the ‘Big Society’ has been whether the civic sense of solidarity might diminish statutory obligations.
I have witnessed the problems with this, first hand, in writing my book ‘Living better with dementia: champions for enhanced communities’ which I hope to publish next year. The same tensions exist in statutory obligations in the form of equality and human rights law, and statutory entities, and non-statutory community-driven ones there too.
As the O’Donnell Report puts it, wellbeing:
‘leads us to place greater weight on the human factors that explain the big differences in wellbeing, but that tend to be pushed to the margins in traditional policy making’.
There has been some focus on how we need an ‘alternative measure to GDP’. Cynics unsurprisingly argued that such a measure might inevitably gather political momentum given the problems we have had with economic growth in the last few years.
But the general arguments from the APPG on wellbeing economics make an enormous amount of sense to me. Julian Huppert is the current MP for Cambridge, and I dedicated my current book to his mother Prof Felicia Huppert, Professor of Wellbeing at Cambridge. Julian is, to my knowledge, on the APPG on wellbeing economics.
The next parliament, I hope, will see a continuation of a focus on wellbeing in policy. As pointed out in their first report, there is considerable overlap with the wellbeing field and that of the ‘social determinants of health’.
In my next book, I continue with analysing this overlap, using housing as an example. Housing is clearly an area which impacts upon the quality of life of people living well with dementia, not just from architectural perspectives of design, but also how spaces are organised to facilitate personal interaction.
Similarly, planning in the built environment is important, with considerations of inclusivity and accessibility.
These are all ‘desirable’ (or even ‘essential’?) attributes of the ‘dementia friendly communities’.
Unpaid caregivers and paid carers, like professionals, are vital in the social capital of these communities too.
It is said elsewhere that while there has been a strong focus on GDP-style economics the lack of focus on wellbeing means that we do not touch upon many policy areas, such as strife caused by marital breakdown.
I feel that this touches upon another tension of dementia policy, this time at a global level.
We know, for example, loneliness is an important source of emotional morbidity for people who have received a probable diagnosis of dementia all around the world.
Also, jurisdictions have been encouraging the aspiration of people living with dementia to live independently; in other words, not institutionalised in some form, as long as possible. This, I think, is intuitively right, so long as it is not perceived as a ‘failure’ if somebody does need the support and care provided from an institution.
There are some people who believe that the ‘successful ageing’ and ‘ageing in place’ movements have overplayed their hand; with cynics pointing out they fit nicely into the ‘small state’ narrative, a rather individualistic narrative, which takes little account of our cohesion as a society.
But this I genuinely think would be to analyse the issue too much but with one important proviso.
That proviso is that I don’t think you can value people simply in terms of their economic productivity.
I refer to this ‘equality of wellbeing’ even in my Introduction to my new book. Such equality of wellbeing throws a different light on equality driven by a purely economic sense.
In summary, in reference to the first ever report from the APPG in wellbeing economics, as the next Government and the Civil Service turn their minds into thinking about wellbeing and health policy, it will be forefront in their minds that we are about to embark on a huge behavioural change bringing together the NHS and social care.
This transformative change to ‘whole person care’ will bring great opportunities, I feel, as well as formidable challenges, not least funding considerations at a local and national level.
But I feel like the current Government, and like future ones hopefully, that a focus on wellbeing is desirable. O’Donnell is reported to have said, “If you can measure it, cherish it!”
Ideally, it would be nice to have some form of metric to see whether wellbeing interventions have any effect. I am mindful of the excellent work by Prof Sube Banerjee and colleagues on DemQoL, but others exist. And of course we should not want to end up where we started: in a target driven culture which hits targets but misses the point (as famously phrased by Sir David Nicholson).
There might be desirable effects of such metrics, though. They could be formally put into grants for research for living well with dementia; to see whether some activities are more beneficial in care homes, where there is a high proportion of people living with dementia often, than others.
The Baroness Sally Greengross asked me to put in a chapter on arts, music and creativity in my current book; so I did.
But, as the new APPG report on dementia this year rightly discusses, such a metric could be used to incentivise the use of the arts and creativity to improve the quality of life of individuals in society. And I have no doubt whatsoever that arts and creativity are a linchpin of dementia friendly communities too.
The APPG in dementia earlier this year, under Sally’s leadership, urged the importance of high quality commissioning in post-diagnostic support for dementia.
If we have more a ‘joined up’ approach to commissioning and policy, in parallel with the breaking down of silos needed for ‘whole person care’, I think England can consolidate its formidable lead in the ‘dementia friendly communities’ policy in the world.
Other jurisdictions might even follow suit.
Gus O’Donnell (Chair) – and Angus Deaton, Martine Durand, David Halpern and Lord Richard Layard(2014). Wellbeing and Policy. London: Legatum Institute. Accessible at: http://www.li.com/docs/default-source/commission-on-wellbeing-and-policy/commission-on-wellbeing-and-policy-report—march-2014-pdf.pdf?sfvrsn=2
Wellbeing in four policy areas: ￼Report by the All-Party Parliamentary Group on Wellbeing Economics (September 2014). Accessible at: http://b.3cdn.net/nefoundation/ccdf9782b6d8700f7c_lcm6i2ed7.pdf
All-Party Parliamentary Group on Dementia assesses progress of the National Dementia Strategy for England
2014 report: The National Dementia Strategy: Change, progress and priorities
Accessible at: http://www.alzheimers.org.uk/site/scripts/download_info.php?downloadID=1447
In a way, the second ever English dementia policy poses more of an acid test than the first one. The reason for this is because we already have a set of yardsticks by which the first five years can be assessed, with a view to projecting forewards.
I don’t doubt the enthusiasm with which we have tried to close the ‘diagnosis gap’ in England. The heart of this is the high quality diagnosis, as stipulated in the original policy co-authored by Prof Sube Banerjee at Brighton and Sussex Medical School. What we have tended towards, rather, is a culture of high volume mediocre quality. And people readily admit they would rather wait that little bit longer to get the correct diagnosis.
I do not subscribe to the idea that anyone can easily make a diagnosis of dementia. When a diagnosis of dementia is finally given, it’s given not just to the person with dementia, but to his or her friends, or her family. As Kate Swaffer says, she is not a person with dementia primarily; she is a person with friends, family and feelings.
This approach prioritising the person has to be right from the word go. We are all persons, but we become patients when we become ill enough to present to the health and care services or not. We become paying consumers when we part with money. We are consumers if we spend any resources from the pot of money paid into from national insurance.
And so on. This analysis of money is a sideshow only as far as to how to service is delivered is actually matters. If you have services in dementia and support commissioned in a highly piecemeal manner, at worst from clinical commissioning groups who don’t know what wellbeing is, nor what they’re looking for, it can be a mess.
The hunt is definitely on for effective commissioning as well as any commissioning at all. The next Government will have to provide much better clarity on this, and some objective guidelines on how, say, the delivery of wellbeing might be ensured on an ongoing basis, not just at the start and finish of a commissioning contract.
But it is the fragmented approach from different providers which is a threat. Low pay of carers, not meeting the national minimum wage, or zero hour contracts, is a problem, and the reason specifically why private providers can be an issue here is that large corporates with scrupulous employment practices can hide behind a veil of being unperturbed from freedom of information legislation.
It is very easy to argue that entire health policy, and even dementia policy, is not political. I don’t believe this is justifiable for a minute. How we prioritise care at all is a reflection of our collective solidarity as a society, and our success in ‘pooling risk’. If I know for example I have a high genetic risk of developing a dementia from my genetic make up, my insurance premiums is likely to go through the roof unless there is tight anti-genetic discrimination law in place in England (which there isn’t).
Having a piecemeal system promotes lack of continuity of care. I think this is fatal for any new English dementia strategy. I think this piecemeal system, whether an artefact of private markets or not, or political ideology, can adversely affect people living with dementia and carers in a number of different ways.
First of all, the caregiver relationship, whether paid or unpaid as carer, fundamentally depends on that caregiver knowing the person with dementia. The happiest relatives I have ever spoken to are the ones who report that they haven’t had a regular changing of the guard as regard carers. This is important for building meaningful relationships with time, as people with Alzheimer’s disease for much of their time, even if they have weak memories for events have strong enduring memories for emotions. Besides, change here can be very distressing, and mental distress can impact on lack of physical wellbeing (although ill being is not necessarily the same as lack of wellbeing).
Secondly, continuity of care by a physician or an appropriate specialist in clinical psychology acts as a safeguard to check the actual diagnosis is right. Some initial cognitive impairments do not progress – they remain mild. A ‘wrong diagnosis’ of dementia does not necessarily mean someone has goofed up as such – it could mean that something that was predicted to progress didn’t. The drive to diagnosing dementia, particularly with financial incentives, could mean we accidentally mislabel mild cognitive impairment as dementia, and this is clearly a tragedy for all involved.
Therefore, a diagnosis disclosure can never be a single hit and run event. There needs to be follow up from the system, whether it’s by the same GP, a hospital physician or psychiatrist, a different member of the memory clinic possibly somewhere totally different; a second ‘set of eyes’ to see whether the initial diagnosis is correct. Granted I agree that knowing what the diagnosis is can be the key to opening services, being armed with information and hence empowered, and all the usual arguments, but the diagnosis must be correct. There is no alternative on this.
Say, for example, you are in fact depressed, not living with dementia, and a clinician in a hurry informs you you are living with dementia. You have presented in response to the question, “Do you have problems with your memory?”. Such a misdiagnosis is likely to make you even more depressed; and not receiving effective treatment for depression, whether as a psychological therapy or medication, or otherwise.
Thirdly, somebody who knows a person well will be able to spot when a person with dementia changes in any way. This could be a ‘difference’, such as the development of a sweet tooth, a ‘deterioriation’ such as in memory, or even an ‘enhancement’ as in acquisition of a love of music, or artistic and creative talents. You can only ascertain this with time. This is where the idea of the review has to change fundamentally.
I don’t feel this review should take place in the hands of medics who repeat scans and tests, ask a few random questions, and document the decline (as dementia is progressive if it is not ‘reversible’ such as vitamin deficiency). Implementation of a ‘year of care’ for dementia, or a national network of clinical specialist nurses, will be able to manage a caseload of individuals living well in a pro-active fashion, each with an individualised care plan; where the goal is to live well, not to firefight in a crisis.
Fourthly, the fundamental crunch time for a person living with dementia is an inability to retain information for a decision, an inability to make that decision, and an inability to communicate that decision. The starting point is that we can make decisions or have ‘capacity’. This capacity can come or go; and it’s dangerous if we get into the mindset that capacity is all or nothing, but that is the legal shortcut we have in place.
But this capacity needs review on a regular basis, as it fundamentally changes our view as to whether a person can consent or not. People living with diffuse lewy body dementia, for example, can notice themselves one day they’re performing quite well, other days not so well. If we don’t get into the good practice of reviewing capacity and consent on a regular basis, through continuity of care, we will easily arrive at a situation where people are languishing inappropriately on medications. It’s generally felt that, while appropriate for some, antipsychotics prescribing is too high, often inappropriately; some side effects such as drooling of the mouth can be very distressing. It’s currently, rightly, a plank of policy to address the inappropriate prescription of antipsychotics particularly in care homes.
In summary, the ideal would be somebody to accompany a person from the point of diagnosis to the time of end of life; not chopping and changing. I was told by a senior specialist nurse at the National Hospital for Neurology and Neurosurgery, Katy Judd, that one of the most disturbing phenomena for persons with dementia and families is when their ‘contacts’ have ‘moved on’ on such a frequent basis. There clearly needs to be proper signposting with the system, known as care coordinators, but we need to avoid the situation where there is an abundance of signposts and a dearth of frontline care.
But I feel fundamentally continuity of care and support is critical. Having the same mutual followers on a social network on Twitter has the potential to improve wellbeing, and having somebody there by you that you trust is likely to have the same effect. People living with dementia who are stimulated psychologically by positive experiences are likely to find their experience fundamentally of a different nature to those who don’t.
For these reasons I feel that, whatever tactics are used, and whichever government is in office and/or power in England, for the next few years, an overall strategy of prioritising the continuity of care is pivotal.
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.