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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.

 

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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

 

Toxic cultures, NHS Trusts and the Francis Report.



Robert Francis has an incredibly difficult task. It is difficult for people who have not qualified in medicine, even managers and leaders of healthcare think tanks, to understand how this situation has arisen. Being a senior lawyer, his approach will necessarily involve “the law is not enough”. The NHS is currently a “political football”, but the overriding objective must be one of patient safety. Whatever your views about managers following financial targets religiously, and regulatory authorities pursuing their own targets sometimes with equal passion, it is hard to escape from the desire for a national framework for patient safety. This is at a time indeed when it is proposed that the National Health and Patient Safety Agency should be abolished, which indeed has oversight of medical devices and equipment. Indeed, one of the findings of the Francis Inquiry is that essential medical equipment was not always available or working. A general problem with the approach of the Health and Social Care Act (2012) has been the abolition of ‘national’ elements, such as abolition of the Health Protection Authority.

That the hospital assumes voluntarily a duty-of-care for its patient once the patient presents himself is a given in English law, but this fact is essential to establish that there has been a breach of duty-of-care legally later down the line. In the increasingly corporate nature of the NHS following the Health and Social Care Act, there is of course a mild irony that there is more than a stench of corporate scandals in the aftermath which is about to explode in English healthcare. Patients’ families feel that they have been failed, and this is a disgrace.

ENRON was a corporate scandal of equally monumental proportions, as explained here:

Mid Staffs NHS Foundation Trust was poor at identifying when things went wrong and managing risk. Some serious errors happened more than once and the trust had high levels of complaints compared with other trusts.

The starting point must be whether the current law is good enough. We have systems in place where complaints can be made against doctors, nurses, midwives and hospitals through the GMC, MWC and CQC respectively, further to local resolution. In fact, it is still noteworthy that many junior and senior doctors are not that cognisant of the local and national complaint mechanisms at all, and the mechanisms used for risk mitigation. There is a sense that the existing regulatory framework is failing patients, and public trust and confidence in medical and nursing, and this might be related to Prof Jarman’s suggestion of an imbalance between clinicians and managers in the NHS.

The Francis Inquiry heard a cornucopia of evidence about a diverse range of clinical patient safety issues, and indeed where early warnings were made but ignored. Prof Brian Jarman incredibly managed to encapsulate many of the single issues in a single tweet this morning:

Any list of failings makes grim reading. There are clear management failures. For example, assessing the priority of care for patients in accident and emergency (A&E) was routinely conducted by unqualified receptionists. There was often no experienced surgeon in the hospital after 9pm, with one recently qualified doctor responsible for covering all surgical patients and admitting up to 20 patients a night. A follower on my own Twitter thread who is in fact him/herself a junior, stated this morning to me that this problem had not gone away:

However, it is unclear what there may be about NHS culture where clinicians do not feel they are able to “whistle blow” about concerns. The “culture of fear” has been described previously, and was alive-and-well on my Twitter this morning:

Experience from other sectors and other jurisdictions is that the law clearly may not be protective towards employees who have genuine concerns which are in the “public interest”, and whose concerns are thereby suppressed in a “culture of bullying“. This breach of freedom of expression is indeed unlawful as a breach of human rights, and toxic leaders in other sectors are able to get away with this, in meeting their targets (in the case of ENRON increased profitability), “project a vision”, and exhibit “actions that “intimidate, demoralize (sic), demean and marginalize (sic)” others. Typically, employees are characterised as being of a vulnerable nature, and you can see how the NHS would be a great place for a toxic culture to thrive, as junior doctors and nurses are concerned about their appraisals and assessments for personal career success. “Projecting a vision” for a toxic hospital manager might mean performing well on efficiency targets, which of course might be the mandate of the government at the time, even if patient safety goes down the pan. Managers simply move onto a different job, and often do not have to deal even with the reputational damage of their decisions. Efficiency savings of course might be secured by “job cuts” (another follower):

Another issue which is clearly that such few patients were given the drug warfarin to help prevent blood clots despite deep vein thrombosis being a major cause of death in patients following surgery. This is a fault in decision-making of doctors and nurses, as the early and late complications of any surgery are pass/fail topics of final professional exams. Another professional failing in regulation of the nurses is that nurses lacked training, including in some cases how to read cardiac monitors, which were sometimes turned off, or how to use intravenous pumps. This meant patients did not always get the correct medication. The extent to which managers ignored this issue is suggestive of wilful blindness. A collusion in failure between management and surgical teams is the finding that delays in operations were commonplace, especially for trauma patients at weekends; surgery might be delayed for four days in a row during which time patients would receive “nil by mouth” for most of the day.

Whether this toxic culture was isolated and unique to Mid Staffs, akin to how corporate failures were rather specialist in ENRON, is a question of importance. What is clear that there has been a fundamental mismatch between the status and perception of healthcare entities where certain individuals have “gamed” the situation. Alarmingly it has also been reported that the University Hospitals of Morecambe Bay NHS Foundation Trust have also had a spate of failures in in maternity, A&E and general medical services. The Sarbanes-Oxley Act (2002) was enacted in the US in response to a number of high-profile accounting scandals. In English law, the Financial Markets and Services Act (2010), even during Labour’s “failure of regulation” was drafted to fill a void in financial regulation. There is now a clear drive for someone to take control, in a manner of crisis leadership in response to natural disasters. Any lack of leadership, including an ability to diagnose the crisis at hand and respond in a timely and appropriate fashion, against the backdrop of a £2bn reorganisation of the NHS, are likely to constitute “barriers-to-improvement” in the NHS.

This issue is far too important for the NHS to become a case for privatisation. It is a test of the mettle of politicians to be able to cope with this. They may have to legislate on this issue, but David Cameron has shown that he is resistant to legislate even after equally lengthy reports (such as the Leveson Inquiry). It is likely that a National Patient Safety Act which puts on a statutory footing a statutory duty for all patients treated in the NHS, even if they are seen by private contractors using the NHS logo, may be entitled to a formal statutory footing. The footing could be to avoid “failure” where “failure” is avoiding harm (non-maleficence). Company lawyers will note the irony of this being analogous to s.172 Companies Act (2006) obliging company directors to promote the “success” of a company, where “success” is defined in a limited way in improving shareholder dividend and profitability under existing common law.

The law needs to restore public trust and confidence in the nursing and healthcare professions, and the management upon which they depend. The problem is that the GMC and other regulatory bodies have limited sanctions, and the law has a limited repertoir including clinical negligence and corporate manslaughter with limited scope. At the end of the day, however, this is not a question about politics or the legal and medical professions, it is very much about real people.

 The advantage of putting this on the statute books once-and-for-all is that it would send out a powerful signal that actions of clinical and management that meet targets but fail in patient safety have imposable sanctions. After America’s most high-profile corporate fraud trial, Mr Lay, the ENRON former chief executive was found guilty on 25 May on all six fraud and conspiracy charges that he faced. Many relatives and patients feel that what happened at Stafford was much worse as it affected real people rather than £££. However, the Sarbanes-Oxley Act made auditors culpable, and the actions of managers are no less important.

This is not actually about Jeremy Hunt. Warning: this is about to get very messy. That Mid Staffs is not isolated strongly suggests that an ability of managers and leaders in Trusts to game the system while failing significantly in patient safety, and the national policy which produced this merits attention, meaning also that urgent legislation is necessary to stem these foci of toxicity. A possible conclusion, but presumption of innocence is vital in English law, from Robert Francis, and he is indeed an eminent QC in regulatory law, is that certain managers were complicit in clinical negligence at their Trusts to improve managerial ratings, having rock bottom regard for actual clinical safety. This represents a form of wilful blindness (and Francis as an eminent regulatory QC may make that crucial link), and there is an element of denial and lack of insight by the clinical regulatory authorities in dealing with this issue, if at all, promptly to secure trust from relatives in the medical profession. The legal profession has a chance now to remedy that, but only if the legislature enable this. But this will be difficult.

 

 

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