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An overview of my book ‘Living better with dementia: champions for enhanced communities”.
I hope you find this overview of my book ‘Living better with dementia: champions for enhanced communities’ useful.
It is written by me.
And the Forewords are Prof Alistair Burns, the England clinical lead for dementia, Kate Swaffer (Alzheimer’s Australia, Dementia Alliance International, and University of Wollongong, Australia), Chris Roberts (Dementia Action Alliance Carers Call to Action, Dementia Alliance International), and Dr Peter Gordon (Consultant Psychiatrist in dementia and cognitive disorders, NHS Scotland).
It will primarily assess where we’ve got to, along with other countries, in improving diagnosis and post-diagnostic care, and assess realistically the work still yet to be done.
My thesis will articulate why the ‘reboot’ of the global “dementia friendly communities” must now take account of various issues to be meaningful. It will argue for a difference in emphasis from competitive ‘nudge’ towards universal legal and enforceable human rights promoting dignity and autonomy.
It will also argue that dementia friendly communities are meaningless unless there is a shift in the use of language away from ‘sufferers’ and ‘victims’, while paying tribute to the successful “Dementia Friends” initiative.
It will, further, argue that dementia friendly communities are best served by a large scale service transformation to ‘whole person care’, and provide the rationale for this. A critical factor for enhancing the quality of life of people living better with dementia will be to tackle meaningfully the social determinants of health, such as housing and education.
The thesis will also argue that dementia friendly communities must also value the behaviours, skills and knowledge of caregivers in wider support networks. This is essential for the development of a proactive service, with clinical specialist nursing input deservedly valued, especially given the enormous co-morbidity of dementia.
This title will be published by Jessica Kingsley Publishers, in early 2015.
Chapters overview
Chapter 1 provided an introduction to current policy in England, including a review of the need for a ‘timely diagnosis’ as well as a right to timely post-diagnostic care. This chapter also provided an overview of the current evidence base of the hugely popular “Dementia Friends” campaign run by the Alzheimer’s Society and Public Health England, to raise awareness about five key ‘facts’ about dementia. It was intended that this campaign should help to mitigate against stigma and discrimination that can be experienced by people living with dementia and their caregivers.
Chapter 2 comprised a preliminary analysis of stigma, citizenship and the notion of ‘living better with dementia’. This chapter explained the urgency of the need to “frame the narrative” properly. This chapter also introduced the “Dementia Alliance International” which has fast become a highly influential campaigning force by people living with dementia for people living with dementia.
Chapter 3 looked at the various issues facing the timely diagnosis and post-diagnostic support of people living with dementia from diverse cultural backgrounds, including people from black, Asian and ethnic minority backgrounds, people who are lesbian, bisexual, gay or transsexual, and people with prior learning difficulties.
Chapter 4 looked at the issue of how different jurisdictions around the world have formulated their national dementia strategies. Examples discussed of countries and continents were Africa, Australia, China, Europe, India, Japan, New Zealand, Puerto Rico and Scotland.
Chapter 5 looked at the intense care vs care debate which has now surfaced in young onset dementia, with a potentially problematic schism between resources being allocated into drugs for today and resources being used to fund adequately contemporary care to promote people living better with dementia. An example was discussed of how the policy of ‘Big Data’ had gathered momentum across a number of jurisdictions, offering personalised medicine as a further potential compontent of person-centred care. This chapter also considered the impact of the diagnosis of younger onset dementia on the partner of the person with dementia as well. A candid description was also given about the possible sequelae of the diagnosis of young onset dementia on employment, caregivers, and in social isolation.
Chapter 6 focused on delirium, or the acute confusional state, and dementia. It considered the NICE guidelines for delirium, and the pitfalls in considering the relationship between delirium and dementia in English policy.
Chapter 7 was the largest chapter in this book, and took as its theme care and support networks. An overview of how patient-centred care is different from person-centred care was given, and how person-centred care differs from relationship-centred care. The literature inevitably has thus far focused on the ‘dyadic relationship’ between the person with dementia and caregiver, but a need to enlarge this to a professional in a ‘triangle of care’ and extended social networks was further elaborated and emphasised. Finally, the importance of clinical specialist nurses in ‘dementia friendly communities’ was argued, as well as the Dementia Action Alliance’s “Carers Call to Action”. Different care settings were described, including care homes, hospitals – including acute hospital care, and intermediate care.
Chapter 8 considered eating for living well with dementia. This chapter considered enforceable standards in care homes, including protection against malnutrition or undernutrition. The main focus of the chapter was how people with dementia might present with alternations in their eating behaviour, and how the mealtime environment must be a vital consideration for living better with dementia.
Chapter 9 looked at a particular comorbidity, incontinence. The emphasis was on conservative approaches for living well with dementia and incontinence. Other issues considered were the impact of incontinence on personhood per se, and the possible impact on the move towards an institutional home.
Chapter 10 argued how the needs for people living better with dementia would be best served by a fully integrated health and social care service. This chapter provided the rationale behind this policy instrument in England. The chapter also considered various aspects of what would be likely to make ‘whole person care’ work, including data sharing, collaborative leadership, care-coordinators, responsible and accountable ‘self care’, and the multi-disciplinary team. This chapter also considered how it was impossible to divorce physical health from mental health and social care, and explained the intention of the longstanding drive towards ‘parity of esteem’ in English policy.
Chapter 11 considered the importance of the social determinants of health. A focus of this chapter was on education, and its impact on a person living with dementia. However, the main focus of this chapter was housing, including ‘dementia friendliness, downsizing, and green or public spaces.
Chapter 12 considered whether ‘wandering’ is the most appropriate term. The main emphasis of this chapter were the legal and ethical considerations in the use of ‘global positioning systems’ in enhancing the quality of life of persons with dementia and their closest ones.
Chapter 13 considered a number of important contemporary issues, with a main emphasis on human rights and “rights based approaches”. While there is no universal right to a budget, the implementation of personal budgets was discussed. The chapter progressed to consider a number of legal issues which are arising, including genetic discrimination in the US jurisdiction, dementia as a disability under the equality legislation in England, and the importance of rights-based approaches for autonomy and dignity. Finally, the issue of engagement was considered.
Chapter 14 was primarily concerned with art and creativity. This chapter took as its focus on how living with dementia could lead to art and creativity, and how the cultural needs of people living with dementia could best be furnished through laughter, poetry and art galleries or museums. This focus also looked at the exciting developments in our understanding of the perception of music in people living with dementia, and how music has the potential to enhance the quality of life for a person living well with dementia.
Chapter 15 looked at the triggering of football sporting memories in people living well with dementia. This chapter considered the cognitive neuroscience of the phenomenon of this triggering, and presented a synthesis of how the phenomenon could be best explained through understanding the role of emotional memory in memory retrieval, how autobiographical memories are represented in the human brain usually, the special relevance of faces or even smells such as “Bovril”.
Chapter 16 looked at the impact of various innovations in English dementia policy, giving as examples including service provision (such as the policy on reducing inappropriate use of antipsychotics or the policy in timely diagnosis) and research. This chapter also contemplated the principal factors affecting how innovations can become known, and what ultimately determines their success.
Chapter 17 looked at how leadership could be promoted by people living with dementia. This chapter considered who might lead the change, where and when, and why this change might be necessary to ‘recalibrate’ the current global debate about dementia. This chapter considered how change might be brought about from the edge, how silos might be avoided, the issue of ‘tempered radicals’ in the context of transformative change to wellbeing as an outcome; and finally how ‘Dementia Champions’ are vital for this change to be effected.
Please note that Beth is not endorsing this book – this image is entirely separate and is taken from the main event for G8 dementia – we’re all proud of Beth’s work meanwhile!
The general election isn’t a referendum about a bacon butty. It’s a referendum on the NHS.
The 2015 general election isn’t a referendum about what exactly someone eating a bacon butty looks like. It’s a referendum on the NHS.
The Tories think the general public is utterly stupid. They think that if they subject Wales to an intense smear campaign about the NHS discussing the English NHS will be ‘out of bounds’.
The Tories must think English voters were all born yesterday. They think nobody will care about the £2.4 billion disastrous reforms which propelled competition law and costly admin into the NHS. They think nobody will care about these reforms which nobody voted for.
If the Health and Social Care Act (2012) was the solution, what was the exact problem? It can’t have been patient safety, even though Jeremy Hunt has repeatedly referred to Mid Staffs since becoming the Secretary of State for Health. Cheap political point scoring has been vulgar under this Government. Labour never cited Harold Shipman’s style as a Doctor as a failure of a Conservative administration.
It’s perfectly correct that Labour should ask about what has happened under the lifetime of this Government in units such as Colchester. There the “major incident” is not an outbreak of Ebola, but an outbreak of dangerous staffing. What is not reasonable to do is to engulf the hardworking nurses and Doctors in a culture of blame and shame, vilifying them for not having been given the tools to do the job.
The Health and Social Care Act (2012) cannot have been the solution if patient safety was the solution, as there is only one clause in this Act regarding patient safety. And that clause was in fact to abolish the National Patient Safety Agency. The real petrol in the tank of this Act is the mechanism which puts contracts out to competitive tendering, meaning that NHS services had a way of being aggressively pimped to the private sector.
It’s simply utterly fraudulent to say that this is how it’s always been under Labour. For a start, Justice Silber in the Lewisham judgment gave clear reasons how the law had changed under this Government, and why Jeremy Hunt’s decision was unlawful in the High Court. It was not only unlawful in the High Court, but it was also unlawful in the Court of Appeal. And was that a good use of hardworking taxpayers’ money? To pay Hunt’s lawyers for this dead-duck case, money was used which could have been used to give a pay rise to the majority of nurses, a pay rise which they were denied yet again.
Furthermore, this Government at shotgun notice legislated for a torpedo hospital closure clause, with the Liberal Democrats on the accelerator pedal. None of us are Luddites, but it’s utterly vulgar to present cuts under the cover of reconfigurations.
Things have fundamentally changed, in that people are now genuinely scared about the direction of travel. The National Health Service should be run for people, not profit. It should offer integrated health and care, not competitive tendering. Before the last election, the NHS was not an issue. Now people are taking to the streets over hospital closures and GP surgery closures. The record all-time high in satisfaction before the last election has now disappeared following the top down reorganisation which nobody voted for.
A&E waits have been disastrous. The length of time it takes to see your GP for a ‘routine appointment’ has become a joke in some parts of the country. And yet the current Government seem utterly divorced from reality – while Rome burns, Jeremy Hunt is fiddling away another sham policy in the guise of a 24/7 NHS.
What is clear is that Lynton Crosby wants to make the general election of May 7th 2015 a referendum on Ed Miliband eating a bacon butty.
It’s not that. It’s a referendum on the state of the NHS.
When cultural change catalysts turn into inhibitors
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.
A lot more unites us in English dementia policy than divides us, potentially
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.
How badly does Ed Miliband want the job?
Ed Miliband has often remarked that he views his pitch for being Prime Minister being like a job interview. This is not a bad way of looking at the situation he finds himself in, one feels.
The “elevator pitch” is a construct where you’re supposed to sell yourself in the space of a short journey in an elevator. What would Ed Miliband have to do to convince you that he means business?
This question is not, “Would you like to be stuck in a lift with Ed Miliband?” But that is undoubtedly how the BBC including Andrew Neil, Andrew Marr or David Dimbleby would like to ask it.
On Facebook yesterday, Ed presented his potted ‘here’s what I stand for in four minutes’ pitch.
It’s here in case you missed it.
Presumably advisers have recommended to Ed in interviews that he must look keen to do the job. But presumably there is a limit to looking ‘too keen': i.e. desperate.
Ed being given the job depends on what the other candidates are like: and Nigel Farage, Nick Clegg and David Cameron are not the world’s most capable candidates.
It’s said that most HR recruiters ‘google’ the candidates before shortlisting. Will Ed Miliband survive the stories about him eating a butty? Or being public enemy no. 1?
Does Ed Miliband have issues he wants to bring to the table?
Yes he does: repeal of the loathed Health and Social Care Act (2012), abolition of the despised bedroom tax, a penalty for tax avoidance, and so on.
Will the media give him a fair hearing?
No.
Does Ed Miliband have a suitable background? Well, he got at least a II.1 – this is all anyone seems to care about these days. (I, for the record, think that the acquisition of a II.1 in itself is meaningless, but that’s purely a personal opinion.)
Would Ed take the job if offered it? Yes.
Will he have OK references? Not if you ask Andrew Marr, but if you ask somebody like James Bloodworth, Sunny Hundal, or Dr Éoin Clarke, yes.
Can Ed return something to his stakeholders? Possibly more than David Cameron can return to his. All Ed has to do is to win.
It’s going to be difficult. This general election on May 7th 2015 is incredibly unpredictable. The main factors, apart from Ed Miliband’s two critics, are whether the LibDem vote will collapse, how well UKIP might do, whether Scotland will be a ‘wipeout’, and so on.
But Ed Miliband’s government repealing the Health and Social Care Act (2012) is far more significant than whether he can eat a butty.
Culture and diversity in living well with dementia
This is a very important chapter to me.
Culture and diversity considerations are hugely pervasive in all of English dementia policy: from the point of timely diagnosis and throughout the course of post diagnostic support.
These are the academic journal references I wish to include in my chapter for my book ‘Living better with dementia: champions for enhanced friendly communities”.
Please do let me know of any initiatives, projects, published papers or reports that you should like me to include in this chapter.
What is listed below is only a start. It does include blogposts, which I intend to include too.
This chapter is of course hugely relevant to global dementia policy.
Aminzadeh F, Byszewski A, Molnar FJ, Eisner M. Emotional impact of dementia diagnosis: exploring persons with dementia and caregivers’ perspectives. Aging Ment Health. 2007 May;11(3):281-90.
Botsford J, Clarke CL, Gibb CE. Dementia and relationships: experiences of partners in minority ethnic communities. J Adv Nurs. 2012 Oct;68(10):2207-17. doi: 10.1111/j.1365 2648.2011.05905.x. Epub 2011 Dec 11.
Bowes A, Wilkinson H. ‘We didn’t know it would get that bad': South Asian experiences of dementia and the service response. Health Soc Care Community. 2003 Sep;11(5):387-96.
Burns A, Mittelman M, Cole C, Morris J, Winter J, Page S, Brodaty H. Transcultural influences in dementia care: observations from a psychosocial intervention study. Dement Geriatr Cogn Disord. 2010;30(5):417-23. doi: 10.1159/000314860. Epub 2010 Nov 12.
Chan WC, Ng C, Mok CC, Wong FL, Pang SL, Chiu HF. Lived experience of caregivers of persons with dementia in Hong Kong: a qualitative study. East Asian Arch Psychiatry. 2010 Dec;20(4):163-8.
Connell CM, Gibson GD. Racial, ethnic, and cultural differences in dementia caregiving: review and analysis. Gerontologist. 1997 Jun;37(3):355-64.
Day A, Francisco A. Social and emotional wellbeing in Indigenous Australians: identifying promising interventions. Aust N Z J Public Health. 2013 Aug;37(4):350-5. doi: 10.1111/1753 6405.12083.
Friedman MR, Stall R, Silvestre AJ, Mustanski B, Shoptaw S, Surkan PJ, Rinaldo CR, Plankey MW. Stuck in the middle: longitudinal HIV-related health disparities among men who have sex with men and women. J Acquire Immune Defic Syndr. 2014 Jun 1;66(2):213-20. doi: 10.1097/QAI.0000000000000143.
Johl N, Patterson T, Pearson L. What do we know about the attitudes, experiences and needs of Black and minority ethnic carers of people with dementia in the United Kingdom? A systematic review of empirical research findings. Dementia (London). 2014 May 22. pii: 1471301214534424. [Epub ahead of print]
Khan F, Tadros G. Complexity in cognitive assessment of elderly British minority ethnic groups: Cultural perspective. Dementia (London). 2013 Feb 21;13(4):467-482. [Epub ahead of print]
Kirk LJ Hick R, Laraway A. Assessing dementia in people with learning disabilities: the relationship between two screening measures. J Intellect Disabil. 2006 Dec;10(4):357-64.
La Fontaine J, Ahuja J, Bradbury NM, Phillips S, Oyebode JR. Understanding dementia amongst people in minority ethnic and cultural groups. J Adv Nurs. 2007 Dec;60(6):605-14.
Lim YY, Pietrzak RH, Snyder PJ, Darby D, Maruff P. Preliminary data on the effect of culture on the assessment of Alzheimer’s disease-related verbal memory impairment with the International Shopping List Test. Arch Clin Neuropsychol. 2012 Mar;27(2):136-47. doi: 10.1093/arclin/acr102. Epub 2011 Dec 23.
Llewellyn, P. The needs of people with learning disabilities who develop dementia: A literature review. Dementia 2011 10: 235-247.
Low LF, Anstey KJ, Lackersteen SM, Camit M, Harrison F, Draper B, Brodaty H. Recognition, attitudes and causal beliefs regarding dementia in Italian, Greek and Chinese Australians. Dement Geriatr Cogn Disord. 2010;30(6):499-508. doi: 10.1159/000321667. Epub 2011 Jan 20.
Manthorpe J, Moriarty J. Examining day centre provision for older people in the UK using the Equality Act 2010: findings of a scoping review. Health Soc Care Community. 2014 Jul;22(4):352-60. doi: 10.1111/hsc.12065. Epub 2013 Aug 17.
McCleary L, Persaud M, Hum S, Pimlott NJ, Cohen CA, Koehn S, Leung KK, Dalziel WB, Kozak J, Emerson VF, Silvius JL, Garcia L, Drummond N. Pathways to dementia diagnosis among South Asian Canadians. Dementia (London). 2013 Nov;12(6):769-89. doi: 10.1177/1471301212444806. Epub 2012 Apr 26.
Morhardt D, Pereyra M, Iris M. Seeking a diagnosis for memory problems: the experiences of caregivers and families in 5 limited English proficiency communities. Alzheimer Dis Assoc Disord. 2010 Jul-Sep;24 Suppl:S42-8. doi: 10.1097/WAD.0b013e3181f14ad5.
Nakanishi M, Nakashima T. Features of the Japanese national dementia strategy in comparison with international dementia policies: How should a national dementia policy interact with the public health- and social-care systems? Alzheimers Dement. 2014 Jul;10(4):468-76.e3. doi: 10.1016/j.jalz.2013.06.005. Epub 2013 Aug 15.
Price E. Coming out to care: gay and lesbian carers’ experiences of dementia services. Health Soc Care Community. 2010 Mar;18(2):160-8. doi: 10.1111/j.1365-2524.2009.00884.x. Epub 2009 Aug 25.
Prince M, Acosta D, Chiu H, Scazufca M, Varghese M; 10/66 Dementia Research Group. Dementia diagnosis in developing countries: a cross-cultural validation study. Lancet. 2003 Mar 15;361(9361):909-17.
Regan JL. Ethnic minority, young onset, rare dementia type, depression: A case study of a Muslim male accessing UK dementia health and social care services. Dementia (London). 2014 May 22. pii: 1471301214534423. [Epub ahead of print]
Rovner BW Casten RJ, Harris LF. Cultural diversity and views on Alzheimer disease in older African Americans. Alzheimer Dis Assoc Disord. 2013 Apr-Jun;27(2):133-7. doi: 10.1097/WAD.0b013e3182654794.
Stokes LA, Combes H, Stokes G. Understanding the dementia diagnosis: the impact on the caregiving experience. Dementia (London). 2014 Jan;13(1):59-78. doi: 10.1177/1471301212447157. Epub 2012 Aug 3.
Sun F, Ong R, Burnette D. The influence of ethnicity and culture on dementia caregiving: a review of empirical studies on Chinese Americans. Am J Alzheimers Dis Other Demen. 2012 Feb;27(1):13-22. doi: 10.1177/1533317512438224.
Werner P, Karnieli-Miller O, Eidelman S. Current knowledge and future directions about the disclosure of dementia: a systematic review of the first decade of the 21st century. Alzheimers Dement. 2013 Mar;9(2):e74-88. doi: 10.1016/j.jalz.2012.02.006. Epub 2012 Oct 24.
Wilkinson, H, Kerr, D, Cunningham, C. Equipping staff to support people with an intellectual disability and dementia in care home settings Dementia vol 4(3) 387–400
The GMC will know what is wrong with their fitness to practice procedures for unwell doctors
The GMC are conducting a review into their ‘fitness to practise’ FTP, procedures.
The independent review into deaths of Doctors who have been on their Register, awaiting FTP, is about to be published soon one hopes.
I have decided to write the GMC a last minute contribution to this consultation.
I am on currently on the Medical Register, having been erased from it in 2006/7. It is beyond reasonable doubt that I was severely ill with an alcohol dependence syndrome.
You’ll get fewer people than me wishing the GMC well, still.
I feel that the support for unwell Doctors in the National Health Service, and any hunger for scalps of Doctors will feed into this.
The question is whether the GMC can fit itself into a wider system of learning from mistakes and also supporting Doctors ‘in trouble’.
I have learnt much from my time, not least becoming into recovery from alcoholism, and being physically disabled for the first time.
But I thought it would be incorrect not for me to make some polite views known. As I say, I wish the GMC well. I am also regulated by the Solicitors Regulation Authority, so I will expect the GMC to obey a new Act of Clinical Regulation if it comes into law pursuant to the English Commission’s proposals.
General Medical Council
3 Hardman Street
Manchester
M3 3AW
Dear Sir
Re GMC Consultation over fitness to practice procedures
It is with interest I have been following your consultation over fitness to practice (FTP) procedures for the medical profession.
I have thus far tried to keep out of these discussions. I myself was only restored to the medical register earlier this year pursuant to a full Medical Practitioners Tribunal Service (MPTS) panel hearing. I can say with all honesty that being returned to your Medical Register was the happiest moment of my entire life. I consider a massive honour to be there now, and indeed became quite tearful taking about it at the recent BMA Careers Fair held in North London a few weeks ago.
My regulation with the General Medical Council (GMC) has been simultaneously ‘the best of times and the worst of times’. I had resisted of commenting on it, because I can hardly been said to have been detached from the processes. But I have gone through the full regulatory loop.
I also have, since my erasure in 2006, re-trained in law, having even obtained a Masters of Law. I feel that proportionality runs like letters through a stick of rock in all the work the legal profession does. Balancing competing interests is what lawyers do. It is what the GMC has done since 1858, reflected as well in your current tagline.
I have also, as explanation, successfully completed a MBA. I decided to study an area called ‘performance management’. I don’t feel this term is particularly helpful, but the discipline has a lot to offer both the legal and medical profession. I had become regulated by the Solicitors Regulation Authority back in January 2011, following a full due diligence procedure.
At the outset, I should wish to apologise for this short note. But I was moved by your current Chair, Prof Terence Stephenson, who told an audience of us at the Practitioners Health Programme in Swiss Cottage, London, that change is totally possible; however, it tends to be ineffective through loud criticism from the sidelines.
That is why I wish to address your concerns head on.
I feel personally my erasure was completely correct. In response to the Chairman of my MPTS panel who asked me whether my time had ‘gone badly’, I disagreed; I said “it was a complete disaster”.
Nearly a year after direction to erasure, in 2007 June I was blue lighted into the Royal Free Hospital. I had a cardiac arrest and epileptic seizure, with a rampant acute bacterial meningitis. I was then kept on life support for six weeks. I became physically disabled. The NHS, though, saved my life.
I have now been in recovery for seven years at least. I do not in any way condone the events which led to my erasure, but in law I believe that ‘but for’ my alcoholism these events would not have happened.
The direction of travel seems pretty clear. Despite a temporary stalling in the response to the English Law Commission, I feel it is likely the proposals for a root and branch reform of clinical regulation will take place shortly. I full support Niall Dickson in this.
Patient safety is paramount. But the balancing of competing interests is not the reputation of Doctors or the reputation of the regulator, but rather the needs of the patients compared to Doctors trying to do their professional work.
It is often forgotten that many Doctors feel mortified if they make a mistake. But the sheer volume of medical mistakes made daily, for example in medication errors, makes it untenable that every doctor who has ever made a mistake should face a tough public sanction.
Furthermore, cracking down too heavily on Doctors in the medical profession is completely countercurrent to the drive to learn from mistakes in the NHS. There should be a learning culture, and in the drive for quality complaints should be acted upon as gold-dust.
I have every confidence that a well respected medical profession will be possible through a well respected GMC. Ensuring high standards in medical profession is not only achieved through regulation. It will only be possible if seniors in the medical profession show leadership as to the skills they wish to see flourish in the health and care sectors.
There is no doubt for me that the investigations process is too long. There are clear ways in which the GMC departs from the standard English law (e.g. regards costs, telling you how long investigations will take, ambiguities in the civil standard of proof of applied). During that time, the mental health of certain Doctors appearing before the GMC will markedly deteriorate due to stress. Low self esteem is a massive problem in people like me who have faced alcoholism or, in the case of others, other substance misuse problems. When you add to this the trial by media which is out of the GMC’s control, the perfect storm can be utterly disastrous.
One of the principal ways in which the GMC departs from the law currently is how there is little emphasis to manage disputes at a local level. Mediation and arbitration is very important under the civil procedure rules of English law, prior to litigation. The GMC approach is adversarial.
I should like enforcement of the current code of conduct, with a view to solving problems rather than publicly sanctioning Doctors as the key priority, to be important. The enforcement of the national minimum wage, for example, has proved problematic, despite it being a very good piece of legislation. Likewise, one can easily argue that requirements for Doctors to express concerns about inadequate resources, or a duty of candour, are already enshrined in the code of conduct, and have been so for many years now.
I mean my short note with complete goodwill. The GMC has an incredibly important function to perform. I am currently under two professional regulators. Since my erasure, I have spent 7 years in recovery, nearly finished five books and graduated in three degrees and one diploma, so rehabilitation is perfectly possible in my view.
As such it’s going to be impossible for the GMC to ‘do outreach’ as regards the health of Doctors. I openly admitted to your MPTS panel that I failed in not putting myself under a GP. I worry about junior Doctors who are worried to seek help over medical issues, because of concerns about their careers. Patient safety is paramount. During time of a lengthy investigation by the GMC, with mental illness not under control, a Doctor due to be appearing in front of you can go from poor health to catastrophic health. They can become in total denial and lack insight.
Whilst I will note why you may not wish to ask about health issues because of various statutory instruments in the English law, one might consider whether it might be proportionate for there to be a ‘middle man’ overseeing sick Doctors. This is essential for separation of powers between the regulator and the regulated. The Practitioners Health Programme and Doctors Benevolent Fund deserve national resourcing. This is not solely an economic case; it is a moral one, I strongly feel.
I trust the GMC will act impressively in response to these demanding issues in due course. Please do not hesitate to contact me should you need to.
Kind regards.
Yours faithfully,
Dr Shibley Rahman
cc [REDACTED]
Journal references for my chapter on living well with dementia and urinary incontinence
I am yet to include influential blogposts, such as this one by Beth Britton (@BethyB1886).
But there is the core of my journal references which I intend to cite in my book chapter on living well with dementia and incontinence.
Please do let me know of any work, in whichever one of the media, you should like me to include. Very many thanks.
Abrams P, Blaivas J, Stanton S, Anderson J. The standardization of terminology of lower urinary tract function.Scand J Urol Nephrol 1988;(Suppl 1)14:5–10.
Afram B, Stephan A, Verbeek H, Bleijlevens MH, Suhonen R, Sutcliffe C, Raamat K, Cabrera E, Soto ME, Hallberg IR, Meyer G, Hamers JP; RightTimePlaceCare Consortium. Reasons for institutionalization of people with dementia: informal caregiver reports from 8 European countries. J Am Med Dir Assoc. 2014 Feb;15(2):108-16. doi: 10.1016/j.jamda.2013.09.012. Epub 2013 Nov 12.
Allan L, McKeith I, Ballard C, Kenny RA. The prevalence of autonomic symptoms in dementia and their association with physical activity, activities of daily living and quality of life. Dement Geriatr Cogn Disord. 2006;22(3):230-7. Epub 2006 Aug 10.
Allen J, Oyebode JR, Allen J (2009) Having a father with young onset dementia: The impact on well-being of young people. Dementia. 8: 455-480.
Berrios G. Urinary incontinence and the psychopathology of the elderly with cognitive failure. Gerontology 1986;32:119–24.
Boustani MA, Sachs GA, Alder CA, Munger S, Schubert CC, Guerriero Austrom M, Hake AM, Unverzagt FW, Farlow M, Matthews BR, Perkins AJ, Beck RA, Callahan CM. Implementing innovative models of dementia care: The Healthy Aging Brain Center. Aging Ment Health. 2011 Jan;15(1):13-22. doi: 10.1080/13607863.2010.496445.
Brandeis GH, Baumann MM, Hossain M, Morris JN, Resnick NM. The prevalence of potentially remediable urinary incontinence in frail older people: a study using the Minimum Data Set. J Am Geriatr Soc. 1997 Feb;45(2):179-84.
Brocklehurst J, Dillane J. Studies of the female bladder in old age II: cystometrograms in 100 incontinent women. Gerontol Clin 1966;8:306–19.
Campbell A, Reinken J, McCosh L. Incontinence in the elderly: prevalence and prognosis. Age Ageing 1985;14:65–70.
Clarkson, P, Abendstern, M, Sutcliffe, C, Hughes, J, Challis, D. (2012) The identification and detection of dementia and its correlates in a social services setting: Impact of a national policy in England Dementia September 2012 vol. 11 no. 5 617-632
Downs M. Embodiment: the implications for living well with dementia. Dementia (London). 2013 May;12(3):368-74. doi: 10.1177/1471301213487465.
Drennan VM, Norrie C, Cole L, Donovan S. Addressing incontinence for people with dementia living at home: a documentary analysis of local English community nursing service continence policies and clinical guidance. J Clin Nurs. 2013 Feb;22(3-4):339-46. doi: 10.1111/j.1365
2702.2012.04125.x. Epub 2012 Jul 13.
Drennan, VM, Cole, L, Iliffe . A taboo within a stigma? a qualitative study of managing incontinence with people with dementia living at home, BMC Geriatrics 2011, 11:75
Drennan, VM, Greenwood, N, Cole, L, Fader, M, Grant, R, Rait, G, Iliffe, S. Conservative interventions for incontinence in people with dementia or cognitive impairment, living at home: a systematic review BMC Geriatrics 2012, 12:77 doi:10.1186/1471-2318-12-77
Ebly EM, Hogan DB, Rockwood K. Living alone with dementia. Dement Geriatr Cogn Disord. 1999 Nov-Dec;10(6):541-8.
Eggermont L H, Scherder E J. Physical activity and behaviour in dementia: a review of the literature and implications for psychosocial intervention in primary care. Dementia 2006; 5(3): 4 1-428.
Ekelund P, Rundgren A. Urinary incontinence in the elderly with implications for hospital care consumption and social disability. Arch Gerontol Geriatr. 1987 Apr;6(1):11-8.
Evans D, Lee E. Impact of dementia on marriage: a qualitative systematic review. Dementia (London). 2014 May;13(3):330-49. doi: 10.1177/1471301212473882. Epub 2013 Jan 25.
Flint A, Skelly J. The management of urinary incontinence in dementia. Int J Geriatr Psychiatry 1994;9:245–6.
Hägglund D. A systematic literature review of incontinence care for persons with dementia: the research evidence. J Clin Nurs. 2010 Feb;19(3-4):303-12. doi: 10.1111/j.1365 2702.2009.02958.x.
Hasegawa J, Kuzuya M, Iguchi A. Urinary incontinence and behavioral symptoms are independent risk factors for recurrent and injurious falls, respectively, among residents in long term care facilities. Arch Gerontol Geriatr. 2010 Jan-Feb;50(1):77-81. doi: 10.1016/j.archger.2009.02.001. Epub 2009 Mar 17.
Hellström L, Ekelund P, Milsom I, Skoog I. The influence of dementia on the prevalence of urinary and faecal incontinence in 85-year-old men and women. Arch Gerontol Geriatr. 1994 Jul-Aug;19(1):11-20.
Hirasawa, Y, Masuda, Y, Kuzuya, M, Kimata, T, Iguchi, A, Uemura, K. End-o life experience of demented elderly patients at home: findings from DEATH project. Psychogeriatrics, Volume 6, Issue 2, pages 60–67, June 2006
Hirsh D, Fainstein C, Musher D. Do condom catheter collecting systems cause urinary tract infection? JAMA 1979;242:340.
Idiaquez J, Roman GC. Autonomic dysfunction in neurodegenerative dementias. J Neurol Sci. 2011 Jun 15;305(1-2):22-7. doi: 10.1016/j.jns.2011.02.033. Epub 2011 Mar 25. Review.
Iltanen-Tähkävuori, S. Design and dementia: A case of garments designed to prevent undressing. Dementia January 2012 vol. 11 no. 1 49-59
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Jirovec MM, Wells TJ. Urinary incontinence in nursing home residents with dementia: the mobility-cognition paradigm. Appl Nurs Res. 1990 Aug;3(3):112-7.
Kraemer HC, Taylor JL, Tinklenberg JR, Yesavage JA.The stages of Alzheimer’s disease: a reappraisal. Dement Geriatr Cogn Disord. 1998 Nov-Dec;9(6):299-308.
Kraijo, H, Brouwer, W, de Leeuw, R, Schrijvers, G.Coping with caring: Profiles of caregiving by informal carers living with a loved one who has dementia. Dementia November 7, 2011 1471301211421261
Leung FW, Schnelle JF. Urinary and fecal incontinence in nursing home residents. Gastroenterol Clin North Am. 2008 Sep;37(3):697-707, x. doi: 10.1016/j.gtc.2008.06.005. Review
Lussier M, Renaud M, Chiva-Razavi S, Bherer L, Dumoulin C. Are stress and mixed urinary incontinence associated with impaired executive control in community-dwelling older women? J Clin Exp Neuropsychol. 2013;35(5):445-54. doi: 10.1080/13803395.2013.789483. Epub 2013 May 8.
Måvall, L, Malmberg, B. Day care for persons with dementia. An alternative for whom? Dementia February 2007 vol. 6 no. 1 27-43
Mo F, Choi BC, Li FC, Merrick J. Using Health Utility Index (HUI) for measuring the impact on health-related quality of Life (HRQL) among individuals with chronic diseases. ScientificWorldJournal. 2004 Aug 27;4:746-57.
O’Donnell BF, Drachman DA, Barnes HJ, Peterson KE, Swearer JM, Lew RA. Incontinence and troublesome behaviors predict institutionalization in dementia. J Geriatr Psychiatry Neurol. 1992 Jan-Mar;5(1):45-52.
Orrell M, Hancock GA, Liyanage KC, Woods B, Challis D, Hoe J. The needs of people with dementia in care homes: the perspectives of users, staff and family caregivers. Int Psychogeriatr. 2008 Oct;20(5):941-51. doi: 10.1017/S1041610208007266. Epub 2008 Apr 17.
Ouslander J, Leach G, Staskin D, Abelson S, Blaustein J, Morishita L, Raz S. Prospective evaluation of an assessment strategy for geriatric urinary incontinence. J Am Geriatr Soc. 1989 Aug;37(8):715-24.
Rabins P, Mace N, Lucas M. The impact of dementia on the family. JAMA 1982;248:333–5.
Rai, J, Parkinson, R. Urinary incontinence in adults/ Surgery Volume 32, Issue 6, p286–291
Resnick, NM: “Urinary incontinence in the elderly.” Medical Grand Rounds 3:281-290, 1984.
Sakakibara R, Uchiyama T, Yamanishi T, Kishi M. Dementia and lower urinary dysfunction: with a reference to anticholinergic use in elderly population. Int J Urol. 2008 Sep;15(9):778-88. doi: 10.1111/j.1442-2042.2008.02109.x. Epub 2008 Jul 14.
Skelly J, Flint A. Urinary incontinence associated with dementia. J Am Geriatr Soc 1995;43:286–94.
Tadros G, Ormerod S, Dobson-Smyth P, Gallon M, Doherty D, Carryer A, Oyebode J, Kingston P. The management of behavioural and psychological symptoms of dementia in residential homes: does Tai Chi have any role for people with dementia? Dementia (London). 2013 Mar;12(2):268-79. doi: 10.1177/1471301211422769. Epub 2011 Nov 20. Review.
Teri L, Borson S, Kiyak HA, Yamagishi M. Behavioral disturbance, cognitive dysfunction, and functional skill. Prevalence and relationship in Alzheimer’s disease. J Am Geriatr Soc. 1989 Feb;37(2):109-16.
Tilvis RS, Hakala SM, Valvanne J, Erkinjuntti T. Urinary incontinence as a predictor of death and institutionalization in a general aged population. Arch Gerontol Geriatr. 1995 Nov Dec;21(3):307-15.
Toot S, Hoe J, Ledgerd R, Burnell K, Devine M, Orrell M. Causes of crises and appropriate interventions: the views of people with dementia, carers and healthcare professionals. Aging Ment Health. 2013;17(3):328-35. doi: 10.1080/13607863.2012.732037. Epub 2012 Nov 16.
Ward R, Campbell S. Mixing methods to explore appearance in dementia care. Dementia (London). 2013 May;12(3):337-47. doi: 10.1177/1471301213477412. Epub 2013 Feb 26.
Yap P, Tan D. (2006) Urinary incontinence in dementia – a practical approach, Aust Fam Physician, 35(4), pp. 237-41.
Yokoi T, Okamura H. Why do dementia patients become unable to lead a daily life with decreasing cognitive function? Dementia (London). 2013 Sep;12(5):551-68. doi: 10.1177/1471301211435193. Epub 2012 Mar 16.
The chapter on art, music and creativity for my new book on living better with dementia
The following are the journal references for my chapter on art, music and creativity for my book “Living better with dementia: champions for enhanced friendly communities”. Please do let me know if you wish to have any further academic papers cited. And also please do let me know if you wish local initiatives or innovations to be featured in my chapter, and I will do my best to include them if appropriate.
Very many thanks.
Amaducci L, Grassi E, Boller F. Maurice Ravel and right-hemisphere musical creativity: influence of disease on his last musical works? Eur J Neurol. 2002 Jan;9(1):75-82.
Basaglia-Pappas S, Laterza M, Borg C, Richard-Mornas A, Favre E, Thomas-Antérion C. Exploration of verbal and non-verbal semantic knowledge and autobiographical memories starting from popular songs in Alzheimer’s disease. Int Psychogeriatr. 2013 May;25(5):785-95. doi: 10.1017/S1041610212002359. Epub 2013 Feb 7.
Beard, R.L. Art therapies and dementia care: A systematic review 2012 11: 633-656.
Bisiani L, Angus J. Doll therapy: a therapeutic means to meet past attachment needs and diminish behaviours of concern in a person living with dementia–a case study approach. Dementia (London). 2013 Jul;12(4):447-62. doi: 10.1177/1471301211431362. Epub 2012 Feb 15.
Blood AJ, Zatorre RJ. Intensely pleasurable responses to music correlate with activity in brain regions implicated in reward and emotion. Proc Natl Acad Sci U S A. 2001 Sep 25;98(20):11818-23.
Budrys V, Skullerud K, Petroska D, Lengveniene J, Kaubrys G. Dementia and art: neuronal intermediate filament inclusion disease and dissolution of artistic creativity. Eur Neurol. 2007;57(3):137-44. Epub 2007 Jan 10.
Camic PM, Chatterjee HJ. Museums and art galleries as partners for public health interventions. Perspect Public Health. 2013 Jan;133(1):66-71. doi: 10.1177/1757913912468523.
Camic PM, Tischler V, Pearman CH. Viewing and making art together: a multi-session art gallery-based intervention for people with dementia and their carers. Aging Ment Health. 2014 Mar;18(2):161-8. doi: 10.1080/13607863.2013.818101. Epub 2013 Jul 22.
Camic PM, Williams CM, Meeten F. Does a ‘Singing Together Group’ improve the quality of life of people with a dementia and their carers? A pilot evaluation study. Dementia (London). 2013 Mar;12(2):157-76. doi: 10.1177/1471301211422761. Epub 2011 Oct 31.
Chakravarty A. De novo development of artistic creativity in Alzheimer’s disease. Ann Indian Acad Neurol. 2011 Oct;14(4):291-4. doi: 10.4103/0972-2327.91953.
Crutch SJ, Isaacs R, Rossor MN. Some workmen can blame their tools: artistic change in an individual with Alzheimer’s disease. Lancet. 2001 Jun 30;357(9274):2129-33.
Eekelaar, C., Camic, P. M., Springham, N. Art galleries, episodic memory and verbal fluency in dementia: An exploratory study. Psychology of Aesthetics, Creativity, and the Arts, Vol 6(3), Aug 2012, 262-272.
Fletcher PD, Clark CN, Warren JD. Music, reward and frontotemporal dementia. Brain. 2014 Oct;137(Pt 10):e300. doi: 10.1093/brain/awu145. Epub 2014 Jun 11.
Fletcher PD, Downey LE, Witoonpanich P, Warren JD. The brain basis of musicophilia: evidence from frontotemporal lobar degeneration. Front Psychol. 2013 Jun 21;4:347. doi: 10.3389/fpsyg.2013.00347. eCollection 2013.
Fornazzari LR. Preserved painting creativity in an artist with Alzheimer’s disease. Eur J Neurol. 2005 Jun;12(6):419-24.
Gjengedal E, Lykkeslet E, Sørbø JI, Sæther WH. ‘Brightness in dark places': theatre as an arena for communicating life with dementia. Dementia (London). 2014 Sep;13(5):598-612. doi: 10.1177/1471301213480157. Epub 2013 Mar 13.
Gold K. But does it do any good? Measuring the impact of music therapy on people with advanced dementia: (Innovative practice). Dementia (London). 2014 Mar 1;13(2):258-64. doi: 10.1177/1471301213494512. Epub 2013 Jul 26.
Gordon N. Unexpected development of artistic talents. Postgrad Med J. 2005 Dec;81(962):753-5.
Gross SM, Danilova D, Vandehey MA, Diekhoff GM. Creativity and dementia: Does artistic activity affect well-being beyond the art class? Dementia (London). 2013 May 22. [Epub ahead of print]
Guétin S, Portet F, Picot MC, Pommié C, Messaoudi M, Djabelkir L, Olsen AL, Cano MM, Lecourt E, Touchon J. Effect of music therapy on anxiety and depression in patients with Alzheimer’s type dementia: randomised, controlled study. Dement Geriatr Cogn Disord. 2009;28(1):36-46. doi: 10.1159/000229024. Epub 2009 Jul 23.
Hafford-Letchfield T. Funny things happen at the Grange: introducing comedy activities in day services to older people with dementia–innovative practice. Dementia (London). 2013 Nov;12(6):840-52. doi: 10.1177/1471301212454357. Epub 2012 Jul 9.
Holland AC, Kensinger EA. Emotion and autobiographical memory. Phys Life Rev. 2010 Mar;7(1):88-131. doi: 10.1016/j.plrev.2010.01.006. Epub 2010 Jan 11. Review.
Hsieh S, Hornberger M, Piguet O, Hodges JR. Neural basis of music knowledge: evidence from the dementias. Brain. 2011 Sep;134(Pt 9):2523-34. doi: 10.1093/brain/awr190. Epub 2011 Aug 21.
James IA, Mackenzie L, Mukaetova-Ladinska E. Doll use in care homes for people with dementia. Int J Geriatr Psychiatry. 2006 Nov;21(11):1093-8.
Janata P. The neural architecture of music-evoked autobiographical memories. Cereb Cortex. 2009 Nov;19(11):2579-94. doi: 10.1093/cercor/bhp008. Epub 2009 Feb 24.
LaBar KS, Cabeza R. Cognitive neuroscience of emotional memory. Nat Rev Neurosci. 2006 Jan;7(1):54-64. Review.
Lazar A, Thompson H, Demiris G. A systematic review of the use of technology for reminiscence therapy. Health Educ Behav. 2014 Oct;41(1 Suppl):51S-61S. doi: 10.1177/1090198114537067.
Mezirow J. (2000) Learning to think like an adult. In J. Mezirow and Associates, Learning as transformation: Critical perspectives on a theory in process. (pp. 3-33). San Francisco: Jossey Bass.
Miller BL, Boone K, Cummings JL, Read SL, Mishkin F. Functional correlates of musical and visual ability in frontotemporal dementia. Br J Psychiatry. 2000 May;176:458-63.
Miller BL, Cummings J, Mishkin F, Boone K, Prince F, Ponton M, Cotman C. Emergence of artistic talent in frontotemporal dementia. Neurology. 1998 Oct;51(4):978-82.
Miller, B.L., Yener, G, Akdal, G. (2005) Artistic patterns in dementia, Journal of Neurological Sciences (Turkish), vol. 22(3), pp. 245-249.
Mitchell G, McCormack B, McCance T. Therapeutic use of dolls for people living with dementia: A critical review of the literature. Dementia August 25, 2014 1471301214548522.
Mitchell G, McCormack B, McCance T. Therapeutic use of dolls for people living with dementia: A critical review of the literature. Dementia (London). 2014 Aug 25. pii: 1471301214548522. [Epub ahead of print]
Mitchell G, Templeton M. Ethical considerations of doll therapy for people with dementia. Nurs Ethics. 2014 Sep;21(6):720-30. doi: 10.1177/0969733013518447. Epub 2014 Feb 3.
Omar R, Hailstone JC, Warren JE, Crutch SJ, Warren JD. The cognitive organization of music knowledge: a clinical analysis. Brain. 2010 Apr;133(Pt 4):1200-13. doi: 10.1093/brain/awp345. Epub 2010 Feb 8.
Pezzati R, Molteni V, Bani M, Settanta C, Di Maggio MG, Villa I, Poletti B, Ardito RB. Can Doll therapy preserve or promote attachment in people with cognitive, behavioral, and emotional problems? A pilot study in institutionalized patients with dementia. Front Psychol. 2014 Apr 21;5:342. doi: 10.3389/fpsyg.2014.00342. eCollection 2014.
Ramachandran, VS, Hirstein, (1999) The science of art: a neurological theory of aesthetic experience. Journal of Consciousness Studies (6), no.6-7, pp.15-51.
Rankin KP, Liu AA, Howard S, Slama H, Hou CE, Shuster K, Miller BL. A case-controlled study of altered visual art production in Alzheimer’s and FTLD. Cogn Behav Neurol. 2007 Mar;20(1):48 61.
Roe B, McCormick S, Lucas T, Gallagher W, Winn A, Elkin S. Coffee, Cake & Culture: Evaluation of an art for health programme for older people in the community. Dementia (London). 2014 Mar 31. [Epub ahead of print]
Salimpoor VN, Benovoy M, Longo G, Cooperstock JR, Zatorre RJ. The rewarding aspects of music listening are related to degree of emotional arousal. PLoS One. 2009 Oct 16;4(10):e7487. doi: 10.1371/journal.pone.0007487.
Seeley WW, Matthews BR, Crawford RK, Gorno-Tempini ML, Foti D, Mackenzie IR, Miller BL. Unravelling Boléro: progressive aphasia, transmodal creativity and the right posterior neocortex. Brain. 2008 Jan;131(Pt 1):39-49. Epub 2007 Dec 5.
Stevens, J 2012, ‘Stand up for dementia: performance, improvisation and stand up comedy as therapy for people with dementia; a qualitative study’, Dementia, vol. 11, no. 1, pp. 61-73.
Takahata K, Saito F, Muramatsu T, Yamada M, Shirahase J, Tabuchi H, Suhara T, Mimura M, Kato M. Emergence of realism: Enhanced visual artistry and high accuracy of visual numerosity representation after left prefrontal damage. Neuropsychologia. 2014 May;57:38-49. doi: 10.1016/j.neuropsychologia.2014.02.022. Epub 2014 Mar 11.
Takeda M, Hashimoto R, Kudo T, Okochi M, Tagami S, Morihara T, Sadick G, Tanaka T. Laughter and humor as complementary and alternative medicines for dementia patients. BMC Complement Altern Med. 2010 Jun 18;10:28. doi: 10.1186/1472-6882-10-28.
Tanaka, Y, Nogawa, H, Tanaka, H. (2012) Music Therapy with Ethnic Music for Dementia Patients, International Journal of Gerontology Volume 6, Issue 4, December 2012, Pages 247 257.
Topo, P, Mäki,O, Saarikalle, K, Clarke, N, Begley, E, Cahill, S, Arenlind, J, Holthe, T, Morbey, H, Hayes, K, Gilliard, J. Dementia October 2004 Assessment of a Music-Based Multimedia Program for People with Dementia vol. 3 no. 3 331-350
Woods RT, Bruce E, Edwards RT, Elvish R, Hoare Z, Hounsome B, Keady J, Moniz-Cook ED, Orgeta V, Orrell M, Rees J, Russell IT. REMCARE: reminiscence groups for people with dementia and their family caregivers – effectiveness and cost-effectiveness pragmatic multicenter randomised trial. Health Technol Assess. 2012;16(48):v-xv, 1-116. doi: 10.3310/hta16480.
Zeilig H. Gaps and spaces: representations of dementia in contemporary British poetry. Dementia (London). 2014 Mar 1;13(2):160-75. doi: 10.1177/1471301212456276. Epub 2012 Aug 17.
Money is tight, but the person remains pivotal in dementia care and support
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.
The reality is there is pressure on service and the workforce simultaneously in dementia, as the Nuffield Trust and Health Foundation have argued in a sophisticated way.
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.
In the statutory guidance, the importance of wellbeing is signalled extremely strongly.
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.
Carers are invaluable as I discuss here.
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?
This situation had become known to Norman Lamb by February 2013:
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.
