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A renewed settlement for dementia is needed nationally, with integration in pole position

The fact that dementia care and support are so fragmented in the devolved administrations of the UK means that a cost saving in timely diagnosis in the health budget will not easily be apparent in national accounting of improved quality of life in the social care budget. In many ways, the dementias constitute a ‘final frontier’ as an issue in society. Anything can happen to anyone at any time, and is it inevitable that we must all die of something. That there are more of us living longer is a testament to various things, possibly not least particular lifestyle or ‘risk reduction’ decisions. More of us living longer will mean more of us developing dementia in all likelihood, as we know the risk of developing dementia increases with age. I heard a joke recently that the only part of a hospital you would find soon not populated with people with dementia would be the special care baby unit, but this is clearly to exaggerate the point.

 

The dementias, over a hundred of them, and of which Alzheimer’s disease (more correctly a syndrome) is the most common, are commonplace. You’re pretty likely, at the very least, to know someone who knows someone with dementia. The disclosure of a diagnosis of dementia can appear as if the ‘professional’ least wants to talk about it, but the ‘patient’ wants to find out as much as he or she can. Dementia is not just a condition of ‘old age’, however, and as a society we need to have a mature attitude for people say in their 40s who see their trajectory of friend and family life, and/or employment, disrupted. At one level, they are all conditions of the brain, and we mean them currently to mean chronic, progressive conditions which get worse. There are ‘symptomatic’ treatments, often very limited in time and scope (but not meaning they’re not “worth a try”). But a disclosure of diagnosis is never solely to one person – or at least should never be solely to one person. Nearest in close relationships are inevitably involved, and have hopes, worries and expectations about the future. To turn around the iceberg (erroneous) belief that all people with dementia are in ‘advanced stages’ has not been easy – and for people who have done this credit must be placed where credit is due.

 

As the classic Ian Dury song goes, there are indeed ‘reasons to be cheerful’. We know a lot more about the science of dementia. There’s a lot more of us living beyond “young” or “mid age”. It has recently had the political spotlight shone on it, but with this scrutiny must inevitably come responsibility. But, for some, the diagnosis can come as a ‘devestating shock’, in that society has conditioned us to fear dementia as more than other entities such as cancer, where there has been marked medical progress. But – piecemeal improvements with time will come for particular medicines, maybe for some with particular genetic or structural footprints, where we can chip away at an iceberg. It might well be the case that particular genomic specs will have a rôle to play here. To have framed it as a ‘cure by 2025’ might have been political expedient in providing a robust vision, but was always inherently flawed. There is a huge amount of research being done into research, and inevitably we all have to be mindful of not reinventing wheels. Much of this research, like government reports, has been done before. Replication is useful, but not when resources are scarce and there are significant opportunity costs.

 

Dementia, more so than many other medical conditions, is profoundly human. It has been necessary and proportionate to see the person beyond a mere diagnosis. Dementia never travels alone, and it’s not uncommonplace for a person with dementia to be living also with five or six other conditions such as lung disease or heart failure. This means that dementia, unlike many of the societal challenges facing us previously, is not simple. It made sense for governments to ‘solve’ other problems such as outbreaks of communicable disease or ‘easier problems’. But there are strong reasons why a national ‘strategy’ for dementia must be nevertheless rigorously pursued, with the previous strategy having expired after five years from 2009 (in 2014). This is even more so in the case of strong drivers for care and support after diagnosis potentially falling apart at a local level due to a plethora of factors, such as postcode lottery of service provision, or even personalised health and social care budgets. We need to renew our contract with the growing number of people with dementia in the UK, approaching now one million, and the solid huge army of carers paid and unpaid. Without unpaid family carers, the system following diagnosis would truly implode – and preserving their health and ability to cope is essential.

 

It is essential that with our improved knowledge of the specifics on dementia we are able to diagnose the type of dementia accurately, and have the skills to do this wherever. The distinctions between primary and secondary care are getting increasingly blurred, as we progress, albeit at snail’s pace, down the pathway of integration. Medical professions know not to give certain drugs in certain types of dementia, to avoid making things worse. But much more importantly – the attitude of ‘nothing can be done’ must be turned around; if a person has complex visuospatial problems following a dementia such as posterior cortical atrophy, the needs of that person must be attended to by occupational therapists, or if a person has complex linguistic problems following a dementia such as primary progressive aphasia that person must be attended to, for example, by a speech and language therapist. If a person is prone to eat sweet foods and drinks in progression of dementia, he or she should have a dietician’s input. If a person develops problems in movement or gait following a dementia, it makes sense for him or her to see a physiotherapist. This enablement narrative which is emerging puts to full use the skills base of the allied health professionals, and this expertise is much needed in the anticipation of care needs, or care planning, say for living life to the full and in ‘avoiding admissions’ to hospital care. Continuity is king.

 

But a national strategy in the UK, where people with dementia and carers get help in the right way, right place, right time, is a testament that we as a society wish to promote wellbeing as well as quality of care, from diagnosis to beyond death, wheresoever that is, at home, in hospital, in a care home, or in a hospice, for instance.  Dementia is not an area which respects traditional boundaries – e.g. young vs old, or health vs social care, requiring a true multidisciplinary boundary-less approach. The complexity of living with dementia means that it is no longer feasible for people to ‘blame’ people with dementia, calling people who are distressed due to a combination of pain and difficulties in communicating as ‘challenging’ – or people with dementia who talk round a subject as ‘confabulating’ – or people who are not engaged in environments promoting contentment as ‘agitated’ – or people who want to go for a walk but haven’t made up their mind as ‘wandering’. “Dementia friendly” care, in as much as the term is genuinely useful rather than a marketing gimmick, is much more than the décor and colour scheme of buildings, also puts personhood first, in other words not having a rapid turnover of staff, or having staff who are too burnt out to care. One cannot underestimate the huge power given to us from the life and teachings of Kitwood.

 

A national strategy for dementia is an endorsement of a long term planning commitment from society to valuing people who have contributed much to society. It is a signal to playing to their strengths. It is said that Ronald Reagan, even with advanced dementia, used to enjoy reminiscing about skills he used in employment in his 20s. But the fact that ‘dementia never travels alone’, and that comorbidity is a norm rather than an exception, means that the national infrastructure has to be fit for purpose, with both generalists and specialists in the workforce, building on the great work in ‘awareness’ from groundbreaking initatives such as ‘Dementia Friends’, electronic patient records, but also a shift in ethos, such as not dosing people up inappropriately in care homes with antipsychotic drugs, greater readiness for advance care planning, access to key components such as legal advice or appropriate housing, a willingness to engage with palliative approaches or end of life when the time comes. The infrastructure must accept also some unpalatable truths – such as we may not be able to provide for the complex needs of residents in care homes when other solutions might be more appropriate, such as community nursing or hospital at home. A more timely diagnosis will mean more people living knowing the diagnosis of dementia than before, and this means a greater responsibility for the signposting of knowledge and information beyond ‘silos’ to encourage wherever possible independent living. And this ethos – in keeping with the regulatory codes for the NHS and social care for example – must fulfil the essential safeguarding and safety obligations from professionals, making sure care is not delayed (say in getting out of hospital or getting into a residential home), health needs (both physical and mental) are not simply ignored irrespective of care setting. There inevitably needs to be a political, social, economic, legal, technological and financial/economic commitment for this renewed dementia strategy with integration centrepoint to reveal itself.

 

The narrative has though undoubtedly changed in other ways. The link between dementia and disability is much clearer in people’s minds, as are the fundamental human rights of people living with dementia (and reciprocal ones from carers) impacting on all aspects, diagnosis, care and support, formal and informal. With this greater definition it is hoped there will be accompanying a greater respect and dignity – and a stronger sense of solidarity, reciprocity and citizenship. No longer can research and service provision be ‘done to’ people with dementia and their closest, but rather the attitude should be ‘done with’.

 

One can only believe in choice and control if the system is not impoverished. We are lucky in the UK in not being a low income country, where different considerations of equity are inevitably involved. But nonetheless we should all be on our guard against inequality, the social determinants of health. Knowledge is power, but likewise ignorance is not bliss after all? We know the numbers of people living with dementia and caring are increasing. We know this could need more resources. We know there’s a benefit from timely diagnosis. We know there is an obligation for high quality of life and quality of care for all involved. We know the wider world has to have a sharp focus on inclusivity and accessibility, which goes beyond ‘friendliness’, but we’ve come a long way in attacking vile stigma and prejudice.

 

But above all – a renewed settlement for dementia is needed nationally, with integration in pole position.

 

 

 

 

Dr Shibley Rahman

London, August 2016

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References for the palliative care chapter of my new book

This is the list of references for chapter 12 ‘Dying well’ in my new book ‘Dementia health, care and wellbeing: a person-centred integrated approach’, to be published by Jessica Kingsley Publishers early in 2017. I am grateful for all the people who shared good practice and knowledge with me.

(list pre copyedit; subject to change.)

 

Aaltonen M, Raitanen J, Forma L, Pulkki J, Rissanen P, Jylhä M. Burdensome transitions at the end of life among long-term care residents with dementia. J Am Med Dir Assoc. 2014 Sep;15(9):643-8. doi: 10.1016/j.jamda.2014.04.018. Epub 2014 Jun 7.

 

Agar M, Beattie E, Luckett T, Phillips J, Luscombe G, Goodall S, Mitchell G, Pond D, Davidson PM, Chenoweth L. Pragmatic cluster randomised controlled trial of facilitated family case conferencing compared with usual care for improving end of life care and outcomes in nursing home residents with advanced dementia and their families: the IDEAL study protocol. BMC Palliat Care. 2015 Nov 21;14(1):63. doi: 10.1186/s12904-015-0061-8.

 

Ahearn DJ, Nidh N, Kallat A, Adenwala Y, Varman S. Offering older hospitalised patients the choice to die in their preferred place. Postgrad Med J. 2013 Jan;89(1047):20-4. doi: 10.1136/postgradmedj-2012-131161. Epub 2012 Nov 9.

 

Ahmed, S, Siddiqi, N. (2015) Bridging the Gap: strengthening relation between hospices and Muslims of Britain, Woolf Institute, November 2015.

 

Albers G, Van den Block L, Vander Stichele R. The burden of caring for people with dementia at the end of life in nursing homes: a postdeath study among nursing staff. Int J Older People Nurs. 2014 Jun;9(2):106-17. doi: 10.1111/opn.12050. Epub 2014 May 10.

 

Alzheimer’s Society/Marie Curie Cancer Care (2014) Living and dying with dementia in England: Barriers to care December 2014

 

Andrews S, McInerney F, Toye C, Parkinson CA, Robinson A. Knowledge of Dementia: Do family members understand dementia as a terminal condition? Dementia (London). 2015 Sep 21. pii: 1471301215605630. [Epub ahead of print]

 

Arcand M. End-of-life issues in advanced dementia: Part 1: goals of care, decision-making process, and family education. Can Fam Physician. 2015 Apr;61(4):330-4.

 

Ashton SE, Roe B, Jack B, McClelland B. End of life care: The experiences of advance care planning amongst family caregivers of people with advanced dementia – A qualitative study. Dementia (London). 2014 Sep 3. pii: 1471301214548521. [Epub ahead of print]

 

Barclay S, Froggatt K, Crang C, Mathie E, Handley M, Iliffe S, Manthorpe J, Gage H, Goodman C. Living in uncertain times: trajectories to death in residential care homes. Br J Gen Pract. 2014 Sep;64(626):e576-83. doi: 10.3399/bjgp14X681397.

 

Bayer A. Death with dementia–the need for better care. Age Ageing. 2006 Mar;35(2):101-2. Epub 2006 Jan 13.

 

Bernacki R, Hutchings M, Vick J, Smith G, Paladino J, Lipsitz S, Gawande AA, Block SD. Development of the Serious Illness Care Program: a randomised controlled trial of a palliative care communication intervention. BMJ Open. 2015 Oct 6;5(10):e009032. doi: 10.1136/bmjopen-2015-009032.

 

Blandin K, Pepin R. Dementia grief: A theoretical model of a unique grief experience. Dementia (London). 2015 Apr 15. pii: 1471301215581081. [Epub ahead of print]

 

Blieszner R, Roberto KA, Wilcox KL, Barham EJ, Winston BL. Dimensions of ambiguous loss in couples coping with mild cognitive impairment. Fam Relat. 2007;56(2):196-209.

 

Boerner K, Burack OR, Jopp DS, Mock SE. Grief after patient death: direct care staff in nursing homes and homecare. J Pain Symptom Manage. 2015 Feb;49(2):214-22. doi: 10.1016/j.jpainsymman.2014.05.023. Epub 2014 Jul 1.

 

Boogaard JA, van Soest-Poortvliet MC, Anema JR, Achterberg WP, Hertogh CM, de Vet HC, van der Steen JT. Feedback on end-of-life care in dementia: the study protocol of the FOLlow-up project. BMC Palliat Care. 2013 Aug 7;12(1):29. doi: 10.1186/1472-684X-12-29.

Borgstrom E, Walter T. Choice and compassion at the end of life: A critical analysis of recent English policy discourse. Soc Sci Med. 2015 Jul;136-137:99-105. doi: 10.1016/j.socscimed.2015.05.013. Epub 2015 May 12.

 

Borgstrom E, Walter T. Choice and compassion at the end of life: A critical analysis of recent English policy discourse. Soc Sci Med. 2015 Jul;136-137:99-105. doi: 10.1016/j.socscimed.2015.05.013. Epub 2015 May 12.

 

Boss P. Ambiguous Loss. Cambridge, MA: Harvard University Press. 1999.

 

Brazil K, Carter G, Galway K, Watson M, van der Steen JT. General practitioners perceptions on advance care planning for patients living with dementia. BMC Palliat Care. 2015 Apr 23;14:14. doi: 10.1186/s12904-015-0019-x.

 

Brecher DB, West TL. Underrecognition and Undertreatment of Pain and Behavioral Symptoms in End-Stage Dementia, Am J Hosp Palliat Care. 2016 Apr;33(3):276-80. doi: 10.1177/1049909114559069. Epub 2014 Nov 28

 

Brinkman-Stoppelenburg, A., Rietjens, J. A., van der Heide, A. (2014). The effects of advance care planning on end-of-life care: a systematic review. Palliative Medicine, 28, 1000–1025.

 

Brown MA, Sampson EL, Jones L, Barron AM. Prognostic indicators of 6-month mortality in elderly people with advanced dementia: a systematic review. Palliat Med. 2013 May;27(5):389-400. doi: 10.1177/0269216312465649. Epub 2012 Nov 22.

 

Brown R, Howard R, Candy B, Sampson EL. Opioids for agitation in dementia. Cochrane Database Syst Rev. 2015 May 14;5:CD009705. doi: 10.1002/14651858.CD009705.pub2.

 

Calanzani N, Moens K, Cohen J, Higginson IJ, Harding R, Deliens L, Toscani F, Ferreira PL, Bausewein C, Daveson BA, Gysels M, Ceulemans L, Gomes B; Project PRISMA. Choosing care homes as the least preferred place to die: a cross-national survey of public preferences in seven European countries. BMC Palliat Care. 2014 Oct 23;13:48. doi: 10.1186/1472-684X-13-48.

 

Calanzani N, Moens K, Cohen J, Higginson IJ, Harding R, Deliens L, Toscani F, Ferreira PL, Bausewein C, Daveson BA, Gysels M, Ceulemans L, Gomes B; Project PRISMA. Choosing care homes as the least preferred place to die: a cross-national survey of public preferences in seven European countries. BMC Palliat Care. 2014 Oct 23;13:48. doi: 10.1186/1472-684X-13-48.

 

Candy B, Elliott M, Moore K, Vickerstaff V, Sampson EL, Jones L. UK quality statements on end of life care in dementia: a systematic review of research evidence. BMC Palliat Care. 2015 Oct 19;14:51. doi: 10.1186/s12904-015-0047-6.

 

Carter G, van der Steen JT, Galway K, Brazil K. General practitioners’ perceptions of the barriers and solutions to good-quality palliative care in dementia. Dementia (London). 2015 Apr 16. pii: 1471301215581227. [Epub ahead of print]

 

Casarett D, Kutner JS, Abrahm J; End-of-Life Care Consensus Panel. Life after death: a practical approach to grief and bereavement. Ann Intern Med. 2001 Feb 6;134(3):208-15.

 

Casarett, D., Takesaka, J., Karlawish, J., Hirschman, K.B., & Clark, C.M. (2002). How should clinicians discuss hospice for patients with dementia? Anticipating caregivers’ preconceptions and meeting their information needs. Alzheimer’s disease and Associated Disorders, 16, 116–122.

 

Chochinov HM, Hack T, McClement S, Kristjanson L, Harlos M. Dignity in the terminally ill: a developing empirical model. Soc Sci Med. 2002 Feb;54(3):433-43.

 

Christakis NA, Iwashyna TJ (1998) Attitude and self-reported practice regarding prognostication in a national sample of internists. Arch Intern Med 158:2389–2395

 

Clark D, Armstrong M, Allan A, Graham F, Carnon A, Isles C. Imminence of death among hospital inpatients: Prevalent cohort study. Palliat Med. 2014 Mar 17;28(6):474-479. [Epub ahead of print]

 

Clute MA, Kobayashi R. Looking within and reaching out: bereavement counselor perceptions of grieving adults with ID [published online April 18, 2012]. Am J Hosp Palliat Care. 2012.

Cohen LW, van der Steen JT, Reed D, Hodgkinson JC, van Soest-Poortvliet MC, Sloane PD, Zimmerman S. Family perceptions of end-of-life care for long-term care residents with dementia: differences between the United States and the Netherlands. J Am Geriatr Soc. 2012 Feb;60(2):316-22. doi: 10.1111/j.1532-5415.2011.03816.x. Epub 2012 Jan 30.

 

Coleman AM. End-of-life issues in caring for patients with dementia: the case for palliative care in management of terminal dementia. Am J Hosp Palliat Care. 2012 Feb;29(1):9-12. doi: 10.1177/1049909111410306. Epub 2011 Jun 10.

 

Connolly A, Sampson EL, Purandare N. End-of-life care for people with dementia from ethnic minority groups: a systematic review. J Am Geriatr Soc. 2012 Feb;60(2):351-60. doi: 10.1111/j.1532-5415.2011.03754.x.

 

Cox, S., Cook, A. (2002). Caring for people with dementia at the end of life. In J. Hockley & D. Clark (Eds.), Palliative care for older people in care homes (pp. 86–103). Buckingham: Open University Press.

 

Dasch B, Blum K, Gude P, Bausewein C: Place of death: trends over the course of a decade—a populationbased study of death certificates from the years 2001 and 2011. Dtsch Arztebl Int 2015; 112: 496–504. DOI: 10.3238/arztebl.2015.0496 (in English)

 

Davies E, Higginson IJ. (eds.) Better palliative care for older people. Copenhagen: World Health Organisation Europe, 2004. http://www.euro.who.int/__data/assets/pdf_file/0009/98235/E82933.pdf

 

Davies N, Maio L, van Riet Paap J, Mariani E, Jaspers B, Sommerbakk R, Grammatico D, Manthorpe J, Ahmedzai S, Vernooij-Dassen M, Iliffe S; IMPACT research team. Quality palliative care for cancer and dementia in five European countries: some common challenges. Aging Ment Health. 2014 May;18(4):400-10. doi: 10.1080/13607863.2013.843157. Epub 2013 Oct 17.

 

Davies N, Manthorpe J, Sampson EL, Iliffe S. After the Liverpool Care Pathway–development of heuristics to guide end of life care for people with dementia: protocol of the ALCP study. BMJ Open. 2015 Sep 2;5(9):e008832. doi: 10.1136/bmjopen-2015-008832.

 

De Roo ML, Albers G, Deliens L, de Vet HC, Francke AL, Van Den Noortgate N, Van den Block L; EURO IMPACT. Physical and Psychological Distress Are Related to Dying Peacefully in Residents With Dementia in Long-Term Care Facilities. J Pain Symptom Manage. 2015 Jul;50(1):1-8. doi: 10.1016/j.jpainsymman.2015.02.024. Epub 2015 Apr 4.

 

De Roo ML, van der Steen JT, Galindo Garre F, Van Den Noortgate N, Onwuteaka-Philipsen BD, Deliens L, Francke AL; EURO IMPACT. When do people with dementia die peacefully? An analysis of data collected prospectively in long-term care settings. Palliat Med. 2014 Mar;28(3):210-9. doi: 10.1177/0269216313509128. Epub 2013 Nov 29.

 

Dening KH, Greenish W, Jones L, Mandal U, Sampson EL. Barriers to providing end-of-life care for people with dementia: a whole-system qualitative study. BMJ Support Palliat Care. 2012 Jun;2(2):103-7. doi: 10.1136/bmjspcare-2011-000178. Epub 2012 Mar 1.

 

Dening KH, Jones L, Sampson EL. Preferences for end-of-life care: a nominal group study of people with dementia and their family carers. Palliat Med. 2013 May;27(5):409-17. doi: 10.1177/0269216312464094. Epub 2012 Nov 5.

 

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Department of health. End of Life Care Strategy: promoting high quality care for adults at the end of their life. https://www.gov.uk/government/publications/end-of-life-care-strategy-promoting-high-quality-care-for-adultsat-the-end-of-their-life

 

Dixon J, Matosevic T, Knapp M. The economic evidence for advance care planning: Systematic review of evidence. Palliat Med. 2015 Dec;29(10):869-84. doi: 10.1177/0269216315586659. Epub 2015 Jun 9.

 

Dougherty M, Harris PS, Teno J, Corcoran AM, Douglas C, Nelson J, Way D, Harrold JE, Casarett DJ. Hospice Care in Assisted Living Facilities Versus at Home: Results of a Multisite Cohort Study. J Am Geriatr Soc. 2015 Jun;63(6):1153-7. doi: 10.1111/jgs.13429.

 

Einterz SF, Gilliam R, Lin FC, McBride JM, Hanson LC. Development and testing of a decision aid on goals of care for advanced dementia. J Am Med Dir Assoc. 2014 Apr;15(4):251-5. doi: 10.1016/j.jamda.2013.11.020. Epub 2014 Feb 6.

 

Elliott M, Harrington J, Moore K, Davis S, Kupeli N, Vickerstaff V, Gola A, Candy B, Sampson EL, Jones L. A protocol for an exploratory phase I mixed-methods study of enhanced integrated care for care home residents with advanced dementia: the Compassion Intervention. BMJ Open. 2014 Jun 17;4(6):e005661. doi: 10.1136/bmjopen-2014-005661.

 

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Estabrooks CA, Hoben M, Poss JW, Chamberlain SA, Thompson GN, Silvius JL, Norton PG. Dying in a nursing home: treatable symptom burden and its link to modifiable features of work context. J Am Med Dir Assoc. 2015 Jun 1;16(6):515-20. doi: 10.1016/j.jamda.2015.02.007. Epub 2015 Mar 21.

 

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Ferreira PL, Bausewein C, Daveson BA, Gysels M, Ceulemans L, Gomes B; Project PRISMA. Choosing care homes as the least preferred place to die: a cross-national survey of public preferences in seven European countries. BMC Palliat Care. 2014 Oct 23;13:48. doi: 10.1186/1472-684X-13-48.

 

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Carers are like gold dust for living better with dementia

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According to Carers UK in May 2014, the 2011 Census figures for the UK showed an 11% rise in the number of carers since the last Census in 2001 – increasing by over 620,000 to 6.5 million in just 10 years. Under this definition, “carers” provide unpaid care by looking after an ill, older or disabled family member, friend or partner.

I recently found myself in such a caring rôle, unexpectedly so. Despite my medical training, or possibly even because of it, I found myself wholly unprepared for it. I must say that, like most carers, it brought me even close to the ‘care recipient’ in question; it was incredibly hard work, physically and emotionally exhausting, but very (non financially) rewarding.

When I was rung up by the North London Carers’ Society which provides support to people such as me, I remember being surprised being referred to as a ‘carer’. This was not out of shame, mind you. I just think that, like many things in life, I had not expected this ‘to be me’. But, as I do keep reminding myself, absolutely anything can happen to anyone at any time.

In my ‘day job’, I am an unpaid analyst of policy both nationally and internationally in dementia. This does not bring me to any conferences. I note recently a flurry of people with lived experiences complaining about such conferences, but as such I would relish the chance to be invited to one personally.

But it has struck me how it would be foolish to try to airbrush out of the discourse policy specialists and carers in discussing living better with dementia. And I feel certain things have to be said for sake of clarity.

A general longstanding principle about wellbeing is that somebody else’s wellbeing can depend upon your wellbeing. This means that if you’re physically, mentally or socially content, this will rub off on somebody close to you. The converse also happens to be true – if you’re physically or emotionally exhausted, this will rub off on the closest to you too.

Similarly, the legitimacy of your human rights depends on the legitimacy of others to exert their human rights. The human rights of a person with dementia and a carer are entirely complementary, in the same way that my freedom of expression might conceivably impact on your right to privacy.

But there are other important drivers for not ignoring the carers.

In England and Wales, since 2009 particularly, on the publication of the seminal report of Prof Sube Banerjee on the need to decrease the number of inappropriate prescriptions for anti-psychotics, and as a stated policy aim in the national strategy ‘Living well with dementia’, there has been huge success in this area of policy. A large part of this has been for professional staff to seek out the reasons why somebody might be agitated or anxious, and providing person-centred care? This is now being borne out by much meticulously conducted research. A person providing care, whatever the official job description, is a ‘carer’. The clue is very much in the name.

A strict interpretation of the jurisprudence would provide that only the person living with dementia could or should make a decision, and that international human rights in fact trump a domestic notion of legal capacity. The reality is that some people with dementia which has far progressed are unable to communicate their decisions, and this is particularly problematic if this lack of communication impacts on health and wellbeing.

It would be fine to argue that in an ideal world everyone can make their decisions in tricky situations known in advance, but the reality is that you cannot possibly anticipate every scenario in advance. Ideally, there’s a school of thought, however, that everyone should have some form of advance directive; for example in anticipation of a force majeure event such as a road traffic accident? And the further reality is that many people in England and Wales, and presumably other jurisdictions, with dementia have not actually been given a formal diagnosis of dementia. Many people enter hospital without a diagnosis of dementia only to be given one, and then can’t even be deemed to be safely discharged to their own home. They often can from that point go to a residential setting, or indeed die in hospital. But the law on capacity in England and Wales is, diplomatically put, a “good broad brush attempt”; we do know, for example, that in certain types of dementia a person can meet the legal test for capacity, but be making wildly abnormal types of decision; an advance direction might mitigate against this problem.

Carers, however so defined but invariably sons, daughters, husbands or wives, have a crucial further rôle to play on the admission of a person with dementia to a care setting such as hospital or hospice. Knowledge and information from carers can be invaluable in shared decision making about care; and it is impossible to know what the background cognition of anyone is without asking somebody close to him or her.

At one extreme, I have seen carers talk on behalf of people with dementia with them present; or carers ‘hog’ bulletin boards. But at another extreme, a discourse without carers is not adequate either. This is literally a case of practising what you preach, if you indeed believe that ‘no decision about us without all of us‘.

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