Language and dementia. Why are we making such poor progress?

Andy Tysoe tweeted this only this morning.

The sheer number of the ‘breakthroughs’ in dementia treatments has been breathtaking in the last few years, particularly since 2012. This of course is a highly manipulative agenda. The aim of this propaganda is to convince you that progress is being made in dementia research, and that you should continue to fund it. The truth is – the vast majority of the breakthroughs are useless.

Nevertheless, we are where we are. Social care funding has not been ringfenced in England since 2010. You are not going to get any stories about this on a frequent basis. English dementia policy needs an infrastructure for coherent integrated person-centred care, with a trained workforce, and care pathways. One large charity pumping out ‘Friends’ is not enough. The same charity has decided to campaign on #FixDementiaCare with cheap tacky photoshoots from MPs, having been ineffective on the issue in the last few years. One should legitimately be asking for stronger clinical leadership this being the case. The English dementia strategy expired five years after 2009 – it is now 2016.

Language sets the political agenda everywhere.

Even words such as ‘engagement’ and ‘involvement’ compound the impression of ‘does he take sugar?’ All too often people with dementia have been speaking in public on the subject of being engaged in events on dementia, rather than real issues in dementia policy – such as the need for funding in social care. Organisers of events invite people with dementia at the last minute, with this act of tokenism being highly insulting in effect. Working groups if the participation at worst is illusory might add a further layer of marketing, and often appear like a nice little earner, potentially, for the bureaucrats organising them. But the real effect is far more damaging – this friendliness has been profoundly disempowering, and highly obstructive. Often the purported ‘co-production’ and the ‘patient voice’ are not genuine at all – the relationship defined by Nesta in 2009 is defined by three simple words “equal and reciprocal”, often forgotten, and becomes a trite trivial piece of marketing, sadly, instead.

Compare this to a whole book on the subject written by Kate Swaffer, “What the hell has happened to my brain?”.

I have been dumbfounded and truly enormously saddened by those who claim to be gurus in engagement and involvement being so silent on Kate’s book. But this for me speaks volumes.

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Kate, not only living with dementia, is about to embark on a Ph.D. Whilst medics go all Captain Cavemen mode about the number of diagnoses (of whatever quality) they’re making, Kate is demonstrating what should be happening. That people living with dementia should be given every single resource to help them live ‘beyond the diagnosis’ as Kate calls it, I feel strongly, is an essential imperative in both domestic and international policy in dementia. This change to a rights-based approach, viewing dementia as a disability, has totally changed the mood music.

Here’s the original paper we did with others on language and dementia some time ago; it was in fact my second ever poster at an international conference on dementia (though I have done considerably more now.)

Chapter 12 on palliative care and end of life in dementia

Crossroad signpost saying this way, that way, another way concept for lost, confusion or decisions

Crossroad signpost saying this way, that way, another way concept for lost, confusion or decisions

The penultimate chapter of my book will discuss palliative care and end of life care in dementia. This will be published in a book entitled ‘Enhancing health and wellbeing in dementia: care homes and care at home’ published by Jessica Kingsley in late 2015. I intend to discuss the following peer-reviewed papers. Please note that this list does not include websites or reports.

 

 

Chapter 12 Dying well in dementia

 

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.

 

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.

 

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.

 

Arcand M. End-of-life issues in advanced dementia: Part 2: management of poor nutritional intake, dehydration, and pneumonia. Can Fam Physician. 2015 Apr;61(4):337-41.

 

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]

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.

 

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.

 

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.

 

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.

 

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.

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]

 

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.

 

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.

 

Dening T, Dening KH. Palliative care in dementia: Does it work? Maturitas. 2016 Jan;83:1-2. doi: 10.1016/j.maturitas.2015.10.006. Epub 2015 Oct 22.

 

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.

 

Ersek M, Thorpe J, Kim H, Thomasson A, Smith D. Exploring End-of-Life Care in Veterans Affairs Community Living Centers. J Am Geriatr Soc. 2015 Apr;63(4):644-50. doi: 10.1111/jgs.13348. Epub 2015 Mar 25.

 

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.

 

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.

 

Finucane AM, Stevenson B, Moyes R, Oxenham D, Murray SA. Improving end-of-life care in nursing homes: implementation and evaluation of an intervention to sustain quality of care. Palliat Med. 2013 Sep;27(8):772-8. doi: 10.1177/0269216313480549. Epub 2013 Apr 23.

 

Fleming R, Kelly F, Stillfried G. ‘I want to feel at home': establishing what aspects of environmental design are important to people with dementia nearing the end of life. BMC Palliat Care. 2015 May 12;14:26. doi: 10.1186/s12904-015-0026-y.

 

Formiga F, Olmedo C, López Soto A, Pujol R. Dying in hospital of severe dementia: palliative decision-making analysis. Aging Clin Exp Res. 2004 Oct;16(5):420-1.

 

Frank JB. Evidence for grief as the major barrier faced by Alzheimer caregivers: a qualitative analysis. Am J Alzheimers Dis Other Demen. 2007 Dec-2008 Jan;22(6):516-27. doi: 10.1177/1533317507307787.

 

Froggatt K, Payne S. A survey of end-of-life care in care homes: issues of definition and practice. Health Soc Care Community. 2006 Jul;14(4):341-8.

 

Frohnhofen H, Hagen O, Heuer HC, Falkenhahn C, Willschrei P, Nehen HG. The terminal phase of life as a team-based clinical global judgment: prevalence and associations in an acute geriatric unit. Z Gerontol Geriatr. 2011 Oct;44(5):329-35. doi: 10.1007/s00391-011-0180-7.

Garand L, Lingler JH, Deardorf KE, DeKosky ST, Schulz R, Reynolds CF 3rd, Dew MA. Anticipatory grief in new family caregivers of persons with mild cognitive impairment and dementia. Alzheimer Dis Assoc Disord. 2012 Apr-Jun;26(2):159-65. doi: 10.1097/WAD.0b013e31822f9051.

 

Gjerberg E, Lillemoen L, Førde R, Pedersen R. End-of-life care communications and shared decision-making in Norwegian nursing homes–experiences and perspectives of patients and relatives. BMC Geriatr. 2015 Aug 19;15:103. doi: 10.1186/s12877-015-0096-y.

 

Gomes B, Calanzani N, Higginson IJ. Reversal of the British trends in place of death: time series analysis 2004-2010. Palliat Med. 2012 Mar;26(2):102-7. doi: 10.1177/0269216311432329. Epub 2012 Jan 18.

 

Gomes B, Calanzani N, Koffman J, Higginson IJ. Is dying in hospital better than home in incurable cancer and what factors influence this? A population-based study. BMC Med. 2015 Oct 9;13:235. doi: 10.1186/s12916-015-0466-5.

 

Goodman C, Amador S, Elmore N, Machen I, Mathie E. Preferences and priorities for ongoing and end-of-life care: a qualitative study of older people with dementia resident in care homes. Int J Nurs Stud. 2013 Dec;50(12):1639-47. doi: 10.1016/j.ijnurstu.2013.06.008. Epub 2013 Jul 16.

 

Goodman C, Amador S, Elmore N, Machen I, Mathie E. Preferences and priorities for ongoing and end-of-life care: a qualitative study of older people with dementia resident in care homes. Int J Nurs Stud. 2013 Dec;50(12):1639-47. doi: 10.1016/j.ijnurstu.2013.06.008. Epub 2013 Jul 16.

 

Goodman C, Amador S, Elmore N, Machen I, Mathie E. Preferences and priorities for ongoing and end-of-life care: a qualitative study of older people with dementia resident in care homes. Int J Nurs Stud. 2013 Dec;50(12):1639-47. doi: 10.1016/j.ijnurstu.2013.06.008. Epub 2013 Jul 16.

 

Goodman C, Evans C, Wilcock J, Froggatt K, Drennan V, Sampson E, Blanchard M, Bissett M, Iliffe S. End of life care for community dwelling older people with dementia: an integrated review. Int J Geriatr Psychiatry. 2010 Apr;25(4):329-37. doi: 10.1002/gps.2343.

 

Goodman C, Froggatt K, Amador S, Mathie E, Mayrhofer A. End of life care interventions for people with dementia in care homes: addressing uncertainty within a framework for service delivery and evaluation. BMC Palliat Care. 2015 Sep 17;14:42. doi: 10.1186/s12904-015-0040-0.

 

Gove D, Sparr S, Dos Santos Bernardo AM, Cosgrave MP, Jansen S, Martensson B, Pointon B, Tudose C, Holmerova I. Recommendations on end-of-life care for people with dementia. J Nutr Health Aging. 2010 Feb;14(2):136-9.

 

Grossman D, Rootenberg M, Perri GA, Yogaparan T, DeLeon M, Calabrese S, Grief CJ, Moore J, Gill A, Stilos K, Daines P, Zimmermann C, Mazzotta P. Enhancing communication in end-of-life care: a clinical tool translating between the Clinical Frailty Scale and the Palliative Performance Scale. J Am Geriatr Soc. 2014 Aug;62(8):1562-7. doi: 10.1111/jgs.12926. Epub 2014 Jun 24.

Grubb C, Arthur A. Student nurses’ experience of and attitudes towards care of the dying: A cross-sectional study. Palliat Med. 2016 Jan;30(1):83-8. doi: 10.1177/0269216315616762. Epub 2015 Nov 17.

 

Hadjistavropoulos T, Herr K, Prkachin KM, Craig KD, Gibson SJ, Lukas A, Smith JH. Pain assessment in elderly adults with dementia. Lancet Neurol. 2014 Dec;13(12):1216-27. doi: 10.1016/S1474-4422(14)70103-6. Epub 2014 Nov 10.

 

Hall S, Kolliakou A, Petkova H, Froggatt K, Higginson IJ. Interventions for improving palliative care for older people living in nursing care homes. Cochrane Database Syst Rev. 2011 Mar 16;(3):CD007132. doi: 10.1002/14651858.CD007132.pub2.

 

Handley M, Goodman C, Froggatt K, Mathie E, Gage H, Manthorpe J, Barclay S, Crang C, Iliffe S. Living and dying: responsibility for end-of-life care in care homes without on-site nursing provision – a prospective study. Health Soc Care Community. 2014 Jan;22(1):22-9. doi: 10.1111/hsc.12055. Epub 2013 May 29.

 

Harris P, Wong E, Farrington S, Craig TR, Harrold JK, Oldanie B, Teno JM, Casarett DJ. Patterns of functional decline in hospice: what can individuals and their families expect? J Am Geriatr Soc. 2013 Mar;61(3):413-7. doi: 10.1111/jgs.12144. Epub 2013 Jan 24.

 

Hendriks SA, Smalbrugge M, Hertogh CM, van der Steen JT. Dying with dementia: symptoms, treatment, and quality of life in the last week of life. J Pain Symptom Manage. 2014 Apr;47(4):710-20. doi: 10.1016/j.jpainsymman.2013.05.015. Epub 2013 Jul 31.

 

Hennings J, Froggatt K, Payne S. Spouse caregivers of people with advanced dementia in nursing homes: a longitudinal narrative study. Palliat Med. 2013 Jul;27(7):683-91. doi: 10.1177/0269216313479685. Epub 2013 Mar 13.

 

Hockley J, Watson J, Oxenham D, Murray SA. The integrated implementation of two end-of-life care tools in nursing care homes in the UK: an in-depth evaluation. Palliat Med. 2010 Dec;24(8):828-38. doi: 10.1177/0269216310373162. Epub 2010 Jul 27.

 

Holley CK, Mast BT. The impact of anticipatory grief on caregiver burden in dementia caregivers. Gerontologist. 2009 Jun;49(3):388-96. doi: 10.1093/geront/gnp061. Epub 2009 Apr 22.

 

Houttekier D, Cohen J, Bilsen J, Addington-Hall J, Onwuteaka-Philipsen BD, Deliens L. Place of death of older persons with dementia. A study in five European countries. J Am Geriatr Soc. 2010 Apr;58(4):751-6. doi: 10.1111/j.1532-5415.2010.02771.x.

 

Houttekier D, Vandervoort A, Van den Block L, van der Steen JT, Vander Stichele R, Deliens L. Hospitalizations of nursing home residents with dementia in the last month of life: results from a nationwide survey. Palliat Med. 2014 Oct;28(9):1110-7. doi: 10.1177/0269216314535962. Epub 2014 May 27.

 

Hughes JC, Robinson L, Volicer L. Specialist palliative care in dementia. BMJ. 2005 Jan 8;330(7482):57-8.

 

Ikegami N, Ikezaki S. Nursing homes and end-of-life care in Japan. J Am Med Dir Assoc. 2013 Oct;14(10):718-23. doi: 10.1016/j.jamda.2013.02.008. Epub 2013 Apr 3.

Jansen K, Schaufel MA, Ruths S. Drug treatment at the end of life: an epidemiologic study in nursing homes. Scand J Prim Health Care. 2014 Dec;32(4):187-92. doi: 10.3109/02813432.2014.972068. Epub 2014 Nov 3.

 

Johansson ÅK, Grimby A. Grief among demented elderly individuals: a pilot study. Am J Hosp Palliat Care. 2013 Aug;30(5):445-9. doi: 10.1177/1049909112457009. Epub 2012 Aug 16.

 

Johansson AK, Sundh V, Wijk H, Grimby A. Anticipatory grief among close relatives of persons with dementia in comparison with close relatives of patients with cancer. Am J Hosp Palliat Care. 2013 Feb;30(1):29-34. doi: 10.1177/1049909112439744. Epub 2012 Apr 10.

 

Johnson KS, Elbert-Avila K, Kuchibhatla M, Tulsky JA. Characteristics and outcomes of hospice enrollees with dementia discharged alive. J Am Geriatr Soc. 2012 Sep;60(9):1638-44. doi: 10.1111/j.1532-5415.2012.04117.x. Epub 2012 Aug 20.

 

Johnston B, Larkin P, Connolly M, Barry C, Narayanasamy M, Östlund U, McIlfatrick S. Dignity-conserving care in palliative care settings: An integrative review. J Clin Nurs. 2015 Jul;24(13-14):1743-72. doi: 10.1111/jocn.12791. Epub 2015 Feb 23.

 

Johnston B, Lawton S, Pringle J. ‘This is my story, how I remember it': In-depth analysis of Dignity Therapy documents from a study of Dignity Therapy for people with early stage dementia. Dementia (London). 2015 Sep 15. pii: 1471301215605629. [Epub ahead of print]

 

Johnston B, Pringle J, Gaffney M, Narayanasamy M, McGuire M, Buchanan D. The dignified approach to care: a pilot study using the patient dignity question as an intervention to enhance dignity and person-centred care for people with palliative care needs in the acute hospital setting. BMC Palliat Care. 2015 Apr 9;14:9. doi: 10.1186/s12904-015-0013-3. eCollection 2015.

 

Jones L, Candy B, Davis S, Elliott M, Gola A, Harrington J, Kupeli N, Lord K, Moore K, Scott S, Vickerstaff V, Omar RZ, King M, Leavey G, Nazareth I, Sampson EL. Development of a model for integrated care at the end of life in advanced dementia: A whole systems UK-wide approach. Palliat Med. 2015 Sep 9. pii: 0269216315605447. [Epub ahead of print]

 

Jones L, Harrington J, Scott S, Davis S, Lord K, Vickerstaff V, Round J, Candy B, Sampson EL. CoMPASs: IOn programme (Care Of Memory Problems in Advanced Stages of dementia: Improving Our Knowledge): protocol for a mixed methods study. BMJ Open. 2012 Nov 27;2(6). pii: e002265. doi: 10.1136/bmjopen-2012-002265. Print 2012.

 

Karacsony S, Chang E, Johnson A, Good A, Edenborough M. Measuring nursing assistants’ knowledge, skills and attitudes in a palliative approach: A literature review. Nurse Educ Today. 2015 Dec;35(12):1232-9. doi: 10.1016/j.nedt.2015.05.008. Epub 2015 May 21.

 

Kinley J, Froggatt K, Bennett MI. The effect of policy on end-of-life care practice within nursing care homes: a systematic review. Palliat Med. 2013 Mar;27(3):209-20. doi: 10.1177/0269216311432899. Epub 2012 Jan 4.

 

Klapwijk MS, Caljouw MA, van Soest-Poortvliet MC, van der Steen JT, Achterberg WP. Symptoms and treatment when death is expected in dementia patients in long-term care facilities. BMC Geriatr. 2014 Sep 2;14:99. doi: 10.1186/1471-2318-14-99.

Kmietowicz Z. Most common cause of death in England and Wales in 2013 was heart disease in men and dementia in women. BMJ. 2015 Mar 2;350:h1156. doi: 10.1136/bmj.h1156.

 

Knapp M, King D, Romeo R, Schehl B, Barber J, Griffin M, Rapaport P, Livingston D, Mummery C, Walker Z, Hoe J, Sampson EL, Cooper C, Livingston G. Cost effectiveness of a manual based coping strategy programme in promoting the mental health of family carers of people with dementia (the START (STrAtegies for RelaTives) study): a pragmatic randomised controlled trial. BMJ. 2013 Oct 25;347:f6342. doi: 10.1136/bmj.f6342.

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A diagnosis of dementia delayed is a diagnosis denied

computer

The first (and thus far) only English dementia strategy was published by the Department of Health in February 2009. Entitled “Living well with dementia” it was described accurately that under-diagnosis of dementia was the norm.

The current feeling about this diagnosis is that it should be a ‘timely diagnosis’. In other words, it should be delivered in a person-centred way, at a time that is right for the person receiving the diagnosis.

The critical recommendation is that a specialist diagnosis should be provided at some stage.

Extract

The type of dementia is indeed relevant. For example, it is possible to target cardiovascular risk factors, such as bad cholesterol, smoking and high blood pressure, to slow down the progression of vascular dementia. Also, say, in diffuse lewy Body dementia a doctor would be wise to avoid prescribing certain medications.

In Chapter 4 of the Department of Health’s “Living well with dementia” (2009), the issues presented by a badly timed diagnosis are provided.

Currently only about one-third of people with dementia receive a formal diagnosis at any time in their illness. When diagnoses are made, it is often too late for those suffering from the illness to make choices. Further, diagnoses are often made at a time of crisis; a crisis that could potentially have been avoided if diagnosis had been made earlier.

Looking at the reality, it is impossible for GPs who are clearly overstretched (as today’s #LMCConf bears out) to be able to make a definitive diagnosis of dementia in a ten minute consultation (or even a twenty minute consultation if a “double slot”).

The question “do you have problems with your memory?” is clearly a daft screening test as, whatever its sensitivity, its specificity is poor. It will pick up problems in memory ranging from the ‘worried well’ to severe depression.

Secondly, a major problem is in the diagnosis of young onset dementia, defined arbitrarily as dementia before the age of 65. One possible cause of this is posterior cortical atrophy, possibly a variant of Alzheimer’s disease, where the predominant initial symptom is in higher order visual processing. Invariably, memory is OK. Memory also tends to be relatively OK in the frontal form of frontotemporal dementia.

The need for referral to specialist services is a very important one. Hospital doctors have a considerable advantage in being able to make the precise diagnosis of type of dementia, with access to sophisticated neuroimaging, blood tests, detailed cognitive psychometry, brainwave scans (EEG) and also tapping off cerebrospinal fluid through lumbar puncture.

The precise gamut of investigations, in addition to a detailed history and examination of the possible proband of person with dementia (and a history, equally of about an hour, from a reliable witness such as a family member), will depend on how obvious the diagnosis is, perhaps.

Some, in very unusual cases, may even require a biopsy of skin, nerve, muscle or brain.

The need to close the ‘diagnosis gap’ was a laudable good intention of the All Party Parliamentary Group 2012 report entitled “Unlocking diagnosis”.

Prof. Sube Banerjee was one of the co-authors of that important document. At a fringe meeting of a day at the King’s Fund, “Leading change in dementia diagnosis and support” in February 2015,  on which I was included as a member of the main panel discussion, Banerjee returned to the importance of the correct diagnosis of dementia.

Slide 1
The UK National Screening Committee (UK NSC) in January 2015 upheld its recommendation against screening everyone aged 65 and over for dementia.

This is clearly the correct decision to me.

There is no screening test which is sensitive and specific enough to pick up the dementias. Bear in mind there are over a hundred different types of dementia (depending on how you count them).

Dr Anne Mackie, Director of Programmes for the UK NSC, said at the time:

While the current test would identify people with mild cognitive impairment, many of them would not go on to actually develop dementia. The evidence shows us that for every 100 people aged 65 tested, 18 would test positive, but only 6 of these would have dementia and 1 case would be missed.

This means we cannot recommend universal screening.

The whole situation was further complicated with NHS England’s ubiquitously criticised decision to incentivise general practitioners through QOF to make a diagnosis of dementia, leading to some pretty untastely headlines – including even in the Financial Times.

FT

This undermined potentially trust in the doctor-patient relationship, where it was known that there was now financial pressure from Government to make the diagnosis. Some in Big Charity even intimated that it was the general practitioners’ fault for not making the diagnosis, when the medical profession through their training were well aware that there exist complicated issues for why patients seek a diagnosis of dementia (for example as described here by Werner and colleagues in 2014).

So actually what happened was ‘demand management’ in the wrong direction. Jeremy Hunt raised expectations through a media war on late diagnosis of dementia (as below), when all along the critical issue is how long people have to wait to get a correct diagnosis of dementia from a specialist, such as memory clinic.

Hunt

The fundamental issue is that a diagnosis delayed is a diagnosis denied. People languishing in waiting for a specialist referral, to find out whether they have dementia or not, having been told that they might have dementia, is quite sadistic, some might say. Certainly not an approach endorsed by the medical profession.

This is not of course the first and only time Jeremy Hunt has actively done harm from a public health perspective. His other interventions on stroke and skin lesions (from tweet) have been equally potentially disastrous, worthy of a clinician being under a spotlight, some might argue, by his or her regulator.

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But what is happening after this delay while people are waiting for the diagnosis from specialist services?

Some people find out that they don’t have dementia at all. For example, Ken Clasper has blogged openly about how he became re-diagnosed with minimal cognitive impairment, with considerable personal readjustment.

To put it succintly, “mild cognitive impairment” is a clinical diagnosis in which deficits in cognitive function are evident but not of sufficient severity to warrant a diagnosis of dementia (Nelson and O’Connor, 2008).

However, the evidence of progression of MCI (mild cognitive impairment) to DAT is currently weak. It might be attractive to think that MCI is a preclinical form of dementia of Alzheimer Type, but unfortunately the evidence is not there to back this claim up at present: most people with MCI will not progress to dementia even after ten years of follow-up (Mitchell and Shiri-Feshki, 2009).

It is not necessarily the case that a clinician makes the ‘wrong diagnosis’. But this a big deal – as a wrong diagnosis of dementia subjects someone to a pretty life changing event in itself, and also there’ the opportunity cost of not having the actual condition being managed properly?

Firstly, I explained previously how GPs can only make a working diagnosis in severe scare resource restraint in time and funding. There is too much of a rampant blame GPs culture currently.

Secondly, clinical presentations change can all the time. By the time a patient gets to see a professional in a specialist service, his presentation might be more florid or obvious. The symptoms could be more obvious, for example.

Thirdly, specialist services have access to tests which can refine the diagnosis. For example, it is not uncommon for a diagnosis of vascular dementia to be added to a diagnosis of Alzheimer’s disease, if a patient presents with a particular type of brain scan – this information would not necessarily have been known to the general practitioner.

Fourthly, I don’t believe that you can suddenly wake up with dementia one morning and not have dementia the previous day. The development of a dementia is a gradual process; all that changes is whether a particular individual fits within a particular diagnostic criteria.

And these criteria change all the time.

When, a few years back, some clinicians revised the criteria for the aMCI, they were aware that many people with dementia would become re-classified as having aMCI. This ‘reclassification’ of diagnosis might have substantial effects, for example, on a State funding benefits.

In an ideal world, you’d want to follow serially for a while a person with possible dementia to see if that person’s cognition or behaviour is indeed markedly changing. This would be an ideal built-in requirement for the diagnosis of dementia as the most common dementias are by definition chronic irreversible and progressive, caused by conditions of the brain.

The delay while someone is waiting for specialist services serves another function too.

Remember the Government statement about the national screening committee? It also contained the following.

Dr Charles Alessi, dementia lead for PHE, said:

In the absence of a treatment or cure, it is important that we take action to reduce the numbers of people getting dementia, delay the onset of dementia or reduce its impact.

PHE and the UK Health Forum published the ground-breaking Blackfriars Consensus earlier this year, which makes the case for concerted action to reduce people’s risk of dementia by supporting them to live healthier lives by doing things like eating well, being active and not smoking.

The mood music has changed.

Firstly, we’ve got another thrust of policy where we are all drug trial guinea pigs now. And many people have vested interests in promoting the idea that there is a pre-symptomatic phase of dementia, called “pre-dementia”, which is amenable to treatment. This of course is part of the whole problem of the over-diagnosis trend which Dr Iona Heath has brilliantly discussed.

Similarly, I feel Prof John Yudkin has been right to draw attention to the similar phenomenon of ‘pre-diabetes‘, which many of us feel serves the function of opening up new markets, patients who can become customers for drugs. Deborah Orr’s article on over-medicalisation of illness in general is brilliant, and I strongly commend it to you.

Your risk of developing dementia might be made possible with your personal genomic scan being done in the future. And with the results, you might possibly be tempted to seek private health insurance. Risk is fundamental to how that industry works.

It is well known the warmth with which the current Government discusses informatics/Big Data and personal genomics.

Take for example George Freeman MP talking in parliament on 29 January 2016. This is the sort of stuff which public-private collaborations are made of, where the State can underwrite future shareholder dividends in private companies, and where the NHS can finally export an aspect of dementia care as ‘profitable’.

The Hansard entry goes thus:

George Freeman

Public health, despite formidable cuts from the current Government in their spending review, remains big business. This was elegantly discussed in an article in the British Medical Journal on the ‘corporate capture of public health’ in 2012. [Mindell, JS; Reynolds, L; Cohen, DL; McKee, M (2012) All in this together: the corporate capture of public health. BMJ (Clinical research ed), 345. ISSN 0959-8138.]

Secondly, people who are told they ‘maybe have dementia’ can enrol onto research programmes. There is now a national aspiration for the number of people to be enrolled through programmes such as #JoinDementiaResearch. Or people may simply be encouraged to donate directly to charity to fund dementia research, with an agenda skewed in a direction away from quality of care towards ‘future treatments’.

But I do feel, as leading campaigner Dr Martin Brunet clearly does, that we should continually be on guard as to who exactly benefits from the current dementia policy.

An apt starting point will be to know for certain what are the regional variations in the wait to get to memory clinics from primary care. We also need to know roughly want proportion of diagnoses at primary care need to be revised.

And finally, we need to know what to do about this (for example is there a case of further training of health professionals in the diagnosis of dementia?)

What we don’t want is an expedited diagnosis which turns out to be wrong. The leading campaigner Chris Roberts, living with mixed vascular and Alzheimer’s dementia, has specifically warned about this in public conferences.

A quote often misattributed to Joseph Stalin is, “The … of one man is a tragedy, the … of millions is a statistic.” I do not want this debate to blame anyone (especially when the medical profession is doing its utmost for this policy). I want us to learn constructively from where things have clearly gone wrong. This will be for the benefit of all NHS patients.

If the past is a different country, the future possibly will be more so for persons with dementia

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Medicine was very different in 2015, compared to 1985; even more so than 1955. If the past is a ‘different country’, the future for medicine most certainly is. They will do things very differently there.

I first encountered Richard Susskind’s very challenging work in a building called CentrePoint off Tottenham Court Road. I was there for a conference on the future of the legal professions. Richard was a keynote speaker.

At that time, it was becoming mainstream to question the ‘billable hour’ model of fee charging. Richard Susskind tells of a story when a member of his family was given a holiday job to lick envelopes; and she queried how that made sense as she was being incentivised ‘to take her time’.

And various variants of this story exist. For example, if you were to pay workers to excavate a motorway, financially it would make more sense if workers were given spoons to do this not shovels, if they were being paid per hour.

Whatever your political ‘bag’, one cannot easily argue that the “purpose” of dementia is to keep clinicians or businessmen in gainful employment. Anyone who has experienced professional work in the law or medicine recently quickly realises that there is not a finite demand. In fact, demand appears to be increasing all the time.

I know from my personal viewpoint in the dementia sphere that not all work done by professionals is non-routine work. I welcome very much the debate on the future of the professions which Richard and Daniel Susskind have started.

I never expected, a few years ago, that you could be able to wave your smartphone in the air, and then use an app to capture a few seconds of that song to identify the exact track. There are computers now which can solve the Rubik’s cube; or predict the outcomes of patient applications; even faster than their counterpart humans.

When one considers the ‘expertise’ of senior medical professionals I worked for, a vast majority of their expertise can be attributed to a vast personal databank of patterns of situations they’ve encountered before. As a medical professional spends more time in practise, one could expect legitimately the ‘judgement’ involved in that expertise to be better.

But I don’t think it is object to do this computational predictive task on the basis of millions of cases, rather than tens of thousands, or even hundreds if you’re newly qualified.

I dare say that a computer processing cognitive profiles of people across time can contribute to a ‘commons’ where it might be possible to predict whether someone is likely to be living with a dementia. It might also be possible for this computational task to be completed more accurately. As a patient, I will be most interested in the accuracy of the diagnosis.

The beauty of the thesis presented by the Susskinds is that it forces people in the medical profession to think about what this profession does which is so different. Members of my profession involved in the medicine of dementia do everything from taking blood, filling forms to order MRI scans, look at results, and talk to patients.

I think some aspects of the medical care of dementia does need ‘human input’ more than others. For example, it is hard to conceive of difficult conversations in end of life care to be achieved through a ‘Ask…’ computer, like the sort you see in telesales.

I wholeheartedly agree also that there are tricky issues to consider for an increased rôle of technology. The English law has managed to consider whether it is possible to make a contract with an automatic ticket machine. But I do agree with the Susskind concern of whether you’d want a computer to make a decision to turn off a life support machine, or to decide a life sentence.

But I don’t think the question which the Susskinds articulate is as binary as they would like to present. For example, would you, if you didn’t accept the turn off the life machine decision, feel happy if a computer did part of the decision-making involved in determining a ‘do not attempt to resuscitate order’? One could imagine an algorithm existing, for example on the degree of co-morbidity, or even previous health. It is human nature to look for other humans to blame, or at least hold to account, if something goes wrong.

Older patients and immigrants have been blamed for the rising costs of the health services, but as medicine becomes more advanced technology could be a contributing factor  to these rising costs. Or maybe not. Possibly intelligent use of technology could mean that more routine work is done more inexpensively.

For me there is an unintended consequence of making everyone with a cognitive impairment to be potentially in the early stages of dementia. Far from ‘demand management’, this approach might accidentally open the floodgates inadvertently. This could mean that everyone becomes a potential customer for pharmaceutical companies wishing to sell products, like statins to reduce blood cholesterol in certain susceptible individuals.

This is tricky politically. One could likewise argue that a man in his 40s legitimately should be able to exercise choice in preventive strategies for dementia, rather than wait for his 70s where with advanced dementia his choice might be more restricted as to his choice of care home.

Intrinsically, I do not see the use of technology including artificial intelligence as ‘competing’ with the medical profession. A liberalised approach does not necessarily mean an unregulated approach, and an overregulated approach can sponge up limited resources.

I asked a London black cab driver, who also had a Hailo sign in his window, what his views were. ‘Hailo’ is an app where you can hail a nearby cab by use of your smartphone fitted with GPS. He laughed, and explained, “you can’t regulate against invisibles anyway.” By this he explained some cabs in a liberalised market might be cheaper, but actually some of their cabbies might lack liability insurance for injury of their passengers.

‘Invisibles’ exist currently anyway. A medical professional deciding to prescribe a cognitive enhancer which he or she might have seen in a drug company sponsored event at lunchtime for all you know?

But there is definitely a strong case for matching the supply of professional medical advice to demand. I think for far too long the organisation of healthcare has been through the prism of money as the scarce resource.

I think if we turn this on its head, and see expertise as the scarce resource (and I mean ALL expertise including the expertise of persons with dementia and carers), we could find an altogether different narrative developing as to how to organise medical professional services for dementia in the future.

 

 

Vlog on @KateSwaffer’s “What the hell happened to my brain?” (pub Jan 21, 2016)

I received this morning my copy of “What the hell happened to my brain?” written by leading international advocate in dementia, Kate Swaffer. This book is due to be released by Jessica Kingsley Publishers on January 21st 2016. I received an advance copy as I wrote one of the Forewords. The other Forewords have been written by Dr Richard Taylor Ph.D. and Glenn Rees AM Chair of Alzheimer’s Disease International.

Kate is Chair of Dementia Alliance International, the international stakeholder group run by people living with dementia. I feel this book will be incredibly useful for a diverse audience, including doctors – especially those completing specialist training in medicine (general medicine, neurology, psychiatry, surgery especially) – as well as members of the public newly diagnosed with dementia.

I know Kate Swaffer held Dr Richard Taylor Ph.D. in very high esteem. I found the chapter dedicated to him, and his Foreword, very moving.

This book is all about living ‘beyond a diagnosis of dementia” – Kate’s phraseology TM. Kate was the first to articulate and explain the phenomenon of ‘prescribed disengagement’ how people at the point of diagnosis are often put into a process of managed decline when they could be given opportunities for an enriched life. This of course goes together with essential practical help, such as things you can do such as driving. It also explodes myths out of the water – and ignites a provocative debate on the ‘big money’ in dementia, disability discrimination, an urgent need to rework the medical label of ‘challenging behaviours’, early vs late diagnosis, stigma, loneliness, inclusion, and guilt.

It’s not hyperbolic, nor puffery, to claim that you won’t be able to put this book down. It’s an outstanding book, and I strongly commend it to you.

 

Dr Shibley Rahman  London : 15 January 2016

 

 

Enhancing health and wellbeing in dementia: care homes and care at home

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I am very honoured that the main foreword will be by Prof Sube Banerjee, Chair of Dementia at Brighton and Sussex Medical School.

Sube is very influential in English dementia policy. His contributions have been outstanding. Indeed, he co-authored the original English dementia strategy ‘Living well with dementia’ in 2009 on behalf of the Department of Health.

I am very honoured that the other two forewords are to be by Lisa Rodrigues and Lucy Frost, who have substantial interest and knowledge in dementia.

The book will be a timely look at the evidence, with many of the topics being rehearsed elsewhere in policy, such as the NHS Five Year Forward View, or the NICE guidance on dementia (currently in development).

This book is likely to be published by Jessica Kingsley Publishers in the end part of 2016.

 

Chapter 1 : Overview

I will draw on the existent literature to consider what has emerged about a consensus about ‘care pathways’ for dementia, in particular the events which can lead up to “crises” or transfer to a residential settings. There has not been an adequate look at the work up in primary care for dementia, and I will consider how domestic policy might be harmonised with international guidance. In the presence of an evidence base for dementia advisors and dementia support workers, I will consider the potential of signposting to services. I will re-visit the evidence base for prevention of dementia, and the current evidence base for the use of cholinesterase inhibitors and other drugs, but will concern myself with the impact of human rights, disability and sustainable communities in current thinking. The largest part of this chapter will be considering quality of care, and novel approaches such as integrated personal commissioning and the personal medical care home. Throughout the book, there will be a detailed discussion of the need to promote the health and wellbeing of carers, both paid and unpaid, and to consider coping strategies which might help through clinical specialist nurses and social care practitioners, and other colleagues.

Chapter 2 – The caring environment and culture

This chapter will explore evidence for the components of the built environment and sensory stimulation and enhancing person and relationship centred care which enhance health and wellbeing across care settings. The main emphasis will be on considering what change might be needed, and under what leadership from all stakeholders, to ‘improve’ services, howeverso defined, and the rôles that risk and innovation might play in the future. If there are truly ‘no more throwaway people’, this chapter will also include how the social capital from people with dementia and carers might be consolidated to build more resilient communities co-designing research and services.

Chapter 3 : Physical health and aspects of pharmacy

Enhancing physical health is essential across all different care settings. This chapter will review the current evidence for management of falls, frailty, pressure sores, urinary tract infections, and hip fractures, as well as aspects of nutrition and metabolic medicine, from a multidisciplinary perspective, emphasising the role for allied health professionals. Aspects of prescribing will also be considered, including overuse, underuse and inappropriate use of medications, and what evidence base has thus far built up in the area of ‘therapeutic lying’ and its ethical implications.

Chapter 4 : Wellbeing and mental health

This chapter will consider aspects of mental wellbeing, including self and identity, and awareness and insight. Its will also consider various other issues to do with mental health, including agitation, apathy, depression, and sleep.

Chapter 5 : Cognitive stimulation and life story

A substantial evidence base has built up concerning non-pharmacological approaches to dementia. This chapter will consider diverse approaches including cognitive stimulation, reminiscence work and cognitive neurorehabilitation. This chapter will also consider the evidence base for ‘life story’ and how it has been approached across various care settings.

Chapter 6 : Oral health and swallowing difficulties

This chapter will consider a much neglected area of health and wellbeing, relevant to holistic health and wellbeing, that of oral health and disease. Current important issues in this field will be considered, including dysphagia and mastication, as well as possible areas of interest for the future.

Chapter 7 : Activities

This chapter will evaluate critically what exactly is meant by the term ‘meaningful activity’, and consider whether reframing of the narrative, such as promoting creativity’ might be more helpful. The chapter will discuss the importance of communication across this area, but consider specifically the arts, drama and theatre, dancing, gardening and outdoor spaces, humour, and music.

Chapter 8 : Spirituality and sexuality

Identity and relationships have emerged as key themes across various conceptualisations of personhood, including of course Tom Kitwood’s. This backdrop will be presented at first, before considering key issues in sexuality, spirituality and religiosity, not only in life after a diagnosis, but also for enhancing health and wellbeing across all health and care settings.

Chapter 9 : Research, regulation and staff

Research and regulation are examples of ‘work in progress’. This chapter will consider the key directions of research in the dementias, both qualitative and quantitative, across various care settings. This chapter will also consider specific areas of interest, including barriers to drug development including regulation. The overall area of regulation will be considered in terms of proportionality, and celebrate areas of good practice. The chapter will also consider areas which also are of utmost importance such as abuse and neglect, and adult safeguarding in general. The chapter will also include a discussion of how the health and wellbeing of staff might be promoted better to meet the needs of people with dementia and carers.

Chapter 10 : Care homes in integrated care

There have been various fashions and fads in thinking about ‘integrated care’, and part of the problem has been the plethora of different perspectives and models. This chapter will adopt a practical perspective of people living with dementia and carers having their health and wellbeing attended to in the right place, right way and the right time, and consider various aspects concerning this. Consequently, the discussion will emphasise advance care planning, attending hospital, admission and re-admission, avoiding hospitals, care transitions, case management, the “future hospitals” initiative from the Royal Colleges of Physicians, improving patient flow, intermediate care and discharge, liaison psychiatry and CMHTs, specialist clinical nurses including Admiral nurses, and “virtual wards”.

Chapter 11 : Independence

This chapter will consider some important diverse areas which intend to promote independence, their progress and impact in overall policy. These include electronic medical and care records, “individual service funds”, and reablement. This chapter will also consider potential opportunities and risks from personal genomics and personalised medicine.

Chapter 12 : Palliative care and end of life care

It is beyond dispute that palliative care and end of life care are essential components of promoting health and wellbeing in people living with dementia and carers. Person-centred care, maximising continuity of care, is fundamental. This chapter will consider the special features of this approach which are very important, and also consider why there has been a reluctance amongst some to consider dementia as a terminal illness. The chapter will also consider the significance of grief, and also consider a possible notion of ‘pre-grief’.

Chapter 13 : Living at home

The first twelve chapters are very relevant to the final chapter on living at home. Whilst much of the media attention is on care homes and nursing homes, or residential settings in general, there is remarkably little focus on living at home, including living at home alone, despite enormous interest in this amongst the general population. This chapter will consider how this approach may have evolved from the philosophy of ‘successful aging in place’, and consider how specific home environments might be enhanced including extra care environments. This chapter will include discussion of, specifically, community nursing including Buurtzorg Nederland, day and respite care, self management. telehealth and technology, and smart homes. The pivotal role of social care and social work will be emphasised throughout.

Are you ready for this? The dark side of English dementia policy.

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All that glisters is not gold.

The progress in the English dementia policy jars inconveniently with the funding crisis and poor performance of some (not all) parts of the National Health Service.

The main issue is that the whole system is not working. For a start, it is not always possible to get people with dementia into hospital in a timely way as it is impossible to discharge ‘fit for discharge’ patients into the community due to the destruction of social care.

Earlier this year, we were also greeted by this cheerful headline:

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And we know that social care has been on its knees for some time.

Richard Humphries, hugely respected at the King’s Fund, gave this unequivocal appraisal in December 2015 concerning the smoke and mirrors of the social care settlement, clouded by talk of the ‘precept':

“Instead of a fundamental root and branch review of how entitlements, as well as funding, are aligned across the NHS and social care, as proposed by the Barker commission, the government has chosen an opaque and messy hotchpotch of measures, which fails to address the short term pressures on social care; it does nothing to place funding on a more sustainable footing in the longer term.”

Dementia policy is currently running in two parallel universes. One universe is the poor state public health and social care find themselves in. The other is the multi-million pound ‘transformation fund’ for drugs for dementia, which may even be too expensive for the NHS to offer in a comprehensive way.

So what’s new in dementia that the Prime Minister can possibly get his teeth into?

The think tank Reform wrote some time ago their perspective about the situation:

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Nick Seddon used to be the Deputy Director of ‘Reform’.

He wrote in the Telegraph back in 2010, just as the intense political debate over the much criticised Health and Social Care Bill erupted, the following:

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And the solution, unsurprisingly, is framed in terms of a hybrid insurance model.

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Lord Warner was the only Labour Peer to vote in favour of the Health and Social Care Act (2012).

And, of course, there was the ideological legacy from the New Labour era, exacerbated a million times worse in the Health and Social Care Act (2012) due to the introduction of default competitive tendering under s.75, of competition as a tool to improve quality. There is very limited evidence to support this, whereas there is quite substantial evidence to show that competition in health markets worsens health equity, and is very costly.

In the Guardian in 2014, a description was given of his new Jerusalem on the NHS based on co-payments and an emphasis on prevention.

Warner

So fast forward to the current framework of the NHS underlying the ‘vanguards’ and the ‘new models of care’.

This all cosily fits in the structure of the ‘three gaps’ of the ‘Five Year Forward View’ from Simon Stevens, whose new Labour background is well known. In 1997 he was appointed policy adviser to two Secretaries of State for Health (Frank Dobson and Alan Milburn) and from 2001 to 2004 was health policy adviser to Tony Blair. He was closely associated with the development of the NHS Plan 2000.

Closing the ‘prevention gap’ is still “big business”. There has been an increasingly tendency to pedal the ‘we’re all patients now’ meme with the Big Charity creations of ‘pre-dementia’ and ‘pre-diabetes’, for example. Reasonable clinicians are of course running a mile from this. And – guess what – prevention of dementia means big money.

However, res ipsa loquitur.

A lot of dementia is NOT preventable – hence the workstream of ‘non modifiable risk factors for dementia’.

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There is one huge reason why the mechanism of us pooling risk together through general taxation is the best way to look towards the future of dementia care. The alternative, through private insurance, would be an unmitigated catastrophe. But this is an ideological war against the National Health Service, and various devices such as the insidious introduction of the personalised budget through the Care Act (2014) have seen this subtle rationing of resources to the individual level, under the deceptive marketing of the word ‘choice’.

It is no accident that Simon Stevens is a huge fan of genomic medicine. With the possibility of your entire genome being scanned, for risk factors for dementia, you could be aware of your risk for dementia and be inclined then to take out private insurance. But the research into genetics in dementia is advancing quite rightly, as it is hoped that efficacious interventions for a suitable subset of genetic +ve persons might exist in the future.

But Alison Cameron has described very elegantly, recently in “Healthcare Manager” magazine, how the patient movement views itself as more than data points as a bit part for others’ agendas.

This creation of new private markets is the ultimate nirvana of those propose privatisation.

But it is a hugely slippery slope.

You could find out you’re at high risk of dementia and decide you’ve got nothing to lose, as the insurance company will pay out, and blow your lifestyle on all the unhealthy risk factors. Or if you’re at low risk you could decide that paying into the NHS is not for you, and opt out for a relatively cheaper private insurance system.

In 2008, in the US the Genetic Information Nondiscrimination Act (“GINA”) was passed into US law, prohibiting discrimination in the workplace and by health insurance issuers. One wonders whether a genetic phenotype should be considered one day for an amendment in the Equality Act for overseeing such claims under discrimination law.

GINA prohibits issuers of health insurance from discrimination on the basis of the genetic information of enrollees. Specifically, health insurance issuers may not use genetic information to make eligibility, coverage, underwriting or premium-setting decisions.

What has genetic discrimination in the US looked like?

Pretty ugly, as for example this:

“Jacob, a boy who carries a gene for a disorder called Long QT Syndrome (LQTS), was denied coverage under his father’s health insurance policy because of his pre-existing condition. LQTS is a rare and little-known genetic disorder that sometimes triggers sudden cardiac death. Those who carry the gene may be healthy until they suffer an attack without warning, but carriers can control their risk of cardiac arrest with preventive beta-blocker therapy. Jacob’s father wanted Jacob to be insured, but even after their state enacted a law prohibiting genetic discrimination, Jacob’s insurance company still refused to cover him.”

Wendy Mitchell, living with dementia, was asked at a recent dementia ’round table’ at the Department of Health:

‘How are things changing on the ground?’

The answer is: probably not as fast as they’re going in Whitehall.

The new question is: “Are you ready for this?”

Time to celebrate women living with dementia as powerful leaders

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This year, there were about three reports which were published co-temporaneously on the theme of ‘women and dementia’. And yet there was surprisingly little focus on women, who are living ‘beyond a diagnosis of dementia’ (Kate Swaffer’s articulation), in leadership rôles.

In one way, I think this overall reflects the bias against people with dementia in leadership rôles. The obsession from medicine, nursing and allied health professionals has been predominantly in leadership in their professions.

There is also in parallel an area of patients who are assuming leadership rôles, although the term ‘patient leader’ can lead to unintended assumptions from some, like that that person is presenting himself or herself as a representative.

I think also the classification and taxonomy of subtypes of leaders has generally been unhelpful. I don’t think it’s possible to read too much into the identity type of leadership in a particular person. The range of options, for example heroic, charismatic, situational, transformative, solo, toxic, is a testament to that.

I also worry about people who nominate themselves as ‘leaders’, in the same way that the identity of ‘entrepreneur’ or ‘innovator’ is often bastardised.

I have little trust in the judgement of others in identifying ‘leaders’, howeverso defined. Whenever leadership and award ceremonies come together, it is not beyond reasonable doubt that the right winners are picked.

Are these winners supposed to be “rôle models”? Take for example the recent example of Katrina Percy who has seen both high points (such as in the HSJ and Guardian) and low points (such as countless newspaper articles and the recent Mazars report).

Bizarre

Southern Health

 

and even more bizarre

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But you cannot extrapolate about women and leadership from one example, as countless counterfactuals exist. One person’s Margaret Thatcher is another person’s Barbara Castle. One person’s Shirley Williams is another person’s Clare Gerada.

I have found quite interesting articles on why often women have problems in breaking through the ‘glass ceiling’, such as this one on ‘unseen barriers’ in the Harvard Business Review website.

The ‘second generation gender bias’, I felt, was particularly interesting.

“Many entrenched organizational structures and work practices were designed to fit men’s lives and situations at a time when women made up only a very small portion of the workforce. … A vicious cycle ensues: Men appear to be best suited to leadership roles, and this perception propels more of them to seek and attain such positions, thus reinforcing the notion that they are simply better leaders.”

And the current articulation of ‘the gender issue’ is perceived as inadequate, as per this article also from the Harvard Business Review website:

“The time has come to reframe the gender issue.  In many companies and countries where I work, from Iran or Brazil to Russia, managers tell me that they recruit a majority of young women as they clearly outperform their male peers.”

I first encountered Susan Suchan, living with dementia, from the close group within the Dementia Alliance International. Her blogpost there is sensational.

Great – BUT what is the chance of Susan being given a paid rôle in a large charity as a leader?

One of the main theories about why women do not become leaders is that they do not find themselves onto the right training programmes or with the right informal networks.

But Susan is a leader.

Look at this video.

 

The Supreme Court were once asked to give an opinion on the definition of “pornography”. They failed to make a suitable definition but did comment ‘you recognise it when you see it’.

Kate Swaffer is clearly an international leader also living with dementia. Her seminal book ‘What the hell happened to my brain?” will be published next year. In addition to ‘power’ as Chair of Dementia Alliance International, she currently has enormous influence in world dementia policy too.

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You recognise leadership when you see it. Helga Rohra has advocated away from the excessive medicalisation of dementia as a powerful advocate as Chair of the European Working Group of Persons with Dementia and latterly Vice Chair of Dementia Alliance International. Helga was pivotal in changing the narrative away from ‘the stages of dementia’ to the ‘faces of dementia’ – this was completely supported by the underlying medicine, as progression in dementia can be variable and unpredictable. Helga once asked what the offering of the current global dementia policy would be to the 47 million people living with dementia at one of the G7 events, and no good answer strikingly was forthcoming.

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And Agnes is a leader too. She received her MBE today from Buckingham Palace. Agnes from her home base in Lanarkshire with her daughter Donna (whom Agnes calls a ‘rock of support’) has been campaigning very successfully on raising awareness of sensory features of living with dementia.

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Agnes does this work for the benefit of other people living with dementia, but also others who desperately need the education. That’s “doing the right thing”, “not necessarily doing the easiest thing”. We don’t need tonnes of infograms and hashtags to realise the value Agnes’ work has brought thus far. Agnes is not ‘owned’ by any organisation, but Agnes is a huge team player as well as a leader.

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So here’s a thought – what about a report this time not just on “women and dementia”, ‘engaging women’, but one on “women with dementia as leaders”? That sort of thing might actually change the narrative, from observational and identification, actually to producing a transformative change.

For example, Wendy Mitchell, living with dementia, at the Department of Health is exactly the type of change we need. See her excellent blogpost here.

The force awakens: the case for neurodiversity in living with a dementia

force awakens

The legal considerations of the case of framing a global response as ‘dementia friendly communities’ are not insubstantial.

‘Dementia friendly communities’, as such, were “sold” in England as an army of new ‘dementia friends’, emulating the caravan befriending of Japan, producing pledges in a mass social movement about making life better for people with dementia.

But it turns out it is more than that.

The communities are intended to promote independent living, by being inclusive and accessible. They therefore fall under the remit of equality. But the undercurrent of this is that people living with dementia need to be pulled up to an equal standard, irrespective of their type of cognitive deficits which characterise the dementia.

This is a double-edged sword. Under the ‘social model of disability’, people living with dementia living with cognitive deficits can be equipped with cognitive aids to help them overcome impairments resulting from their cognitive disability.

But this incompletely addresses diversity of thought amongst people diagnosed with dementia. Diversity can be embraced in a positive way by employers with the right mindset. For example, people with memory problems can be re-employed in a job where memory is not a big component or where memory aids enable the job to be done.

The label of ‘dementia’ has been argued as useful in that ‘it unlocks services’. The numerous stories of people who’ve had their diagnosis changed from ‘dementia’ to ‘minimal cognitive impairment’, with disastrous personal reaction, are to some extent testament to this.

But IF it is the case that people have caused this effectively by living with a dementia better some serious scrutiny should be put into whether the medical profession in effect punishing people for living better with a chronic condition.

A  concept, however, has emerged called the ‘affirmation model of disability’, which is described in this academic paper.

“Graby (2015) suggests that John Swain and Sally French’s (2000) ‘affirmation model of disability’ may be useful in taking this project forward, in which ‘disabled individuals assert a positive identity, not only in being disabled, but also being impaired. In affirming a positive identity of being impaired, disabled people are actively repudiating the dominant value of normality’ (Swain and French 2000, 578). The proposition from the neurodiversity movement is that we should reclaim and redefine ‘impairment’, in the same way as the first disability rights activists challenged the meaning of ‘disability’.”

This takes dementia, as a disability, into a new reframed arena of activism.

The same paper,

“It is our hope that building solidarity across experiences of marginalisation and disablement can move us beyond defining how we each individually deviate from the norm. At a time of increased psychiatrisation coupled with aggressive and devastating public spending cuts and government policies, we need to think collectively about how these processes affect us all.”

There are some people who find themselves, however, disabled by their diagnosis. This in policy is not drawn attention to for the correct fear of further exacerbating the stigma and prejudice surrounding dementia.

But dementia finds itself in the same and different place to other disabilities at the same time.

Dementia and other disabilities share the UN sustainable goals, similar to the UN millennium goals.

Sustainable Development Goals_E_Final sizes

But on the hand people living with dementia around the world have experienced distress from austerity, due to the global financial crash of investment markets. In England, this has witnessed the collapse of the Independent Living Fund, while global investment goes into finding a pharmacological cure for dementia.

Being friendly to people around the world, living with dementia, was a well intended aim, for loneliness and social isolation frequently accompany the diagnosis of dementia (for the direct recipients of the diagnosis and carers as well).

However, it is clear that the 47 million people living with dementia have set their sights much higher.

The force awakens.

 

 

I’d be very surprised if the NHS’ “new models of care” were built to last

I’d be very surprised if anyone expects the “new models of care” from NHS England, regularly showcased at conferences, will be the final answer on the organisation of the NHS and social care. Changes in system organisation for dementia are very unsettling, particularly when they happen so regularly.

But the contrast between the “global response” to dementia and the global response to “climate” couldn’t be starker. The former was spearheaded as a response by Big Pharma, undercover of the G7, to ‘find a cure by 2025′, where clearly the main beneficiaries were corporate stakeholders, not the current 47 million people living around the world with dementia.

The film “Still Alice” is testament to this. It pictures one end of dementia services, the medicalisation of dementia, where the patient is privy to a sophisticated expensive brain scan and a specific genetic diagnosis and management plan. Whether or not it is ‘Hollywood’, or indeed the conflation of Alzheimer’s disease and dementia (“Alzheimerisation”), it is far cry to how dementia is actually identified and acted upon in low income in countries. But climate change affects everyone – including China, which for the purposes of the climate discussion, is a “developing country”, not a powerful growing economy. I say the response to dementia could have been one which also benefits everyone – there are after all many people living with dementia around the world.

But China also happens to make iPads, whatever your particular views of globalisation. In the long view of any corporate producing products, the strategy factors in the fact that a product will be regularly updated every years to maintain growth in the industry. I dare say when Apple was envisaging the iPad, it may already have known about the iPad2, but not necessarily about the iPad Pro.

I’d be very surprised if the NHS and social care, and all who benefit from advising it, view the “new models of care” as their final answer. It doesn’t as such matter, as is usual in higher NHS management culture, if they screw up.

“Planned obsolescence” or “built-in obsolescence” in industrial design is a policy of planning or designing a product with an artificially limited useful life, so it will become obsolete, that is, unfashionable or no longer functional after a certain period of time. The rationale behind the strategy is to generate long-term sales volume by reducing the time between repeat purchases.

In the United States, automotive design had appeared to reach a turning point in 1924 when the American national automobile market began reaching saturation. According to the ‘Ansoff curve’, known to every keen student of management, diversification is the only option.

To maintain unit sales, General Motors head Alfred P. Sloan Jr. suggested annual model-year design changes to convince car owners that they needed to buy a new replacement each year, an idea borrowed from the bicycle industry, though the concept is often misattributed to Sloan.

And this principle still continues up until today.

Tech repair and upgrade website “iFixit” has claimed that the Apple Watch won’t be a long term option for those hoping to continually upgrade their device. Upon the release of the Apple Watch, “iFixit” immediately got down to the business of (iBuffs look away now) tearing the brand new product open and evaluating it from the inside. According to “iFixIt”, The s1SiP is custom-designed Apple technology that integrates a number of subsystems like the chip into one package. It is, in fact, encased in resin to increase its durability.

apple watches

It is not uncommon now for gadgets to have every component soldered onto a massive circuit board so that individual replacements are impossible.

At the beginning of April 2015, the National Institute for Health Research published the final version of the report, Insights from the clinical assurance of reconfiguration in the NHS, written by The King’s Fund. They found that those considering reconfiguration often have a limited evidence base to draw on and that few reconfigurations achieved the financial savings they promised. And I dare say many of them fail to achieve their exact clinical outcomes.

The tragedy is, of course, that we have been here very many times before.

The Conservatives won the election in June 1970, and Sir Keith Joseph replaced Richard Crossman. Joseph produced his own proposals for NHS reorganisation that were embodied in a White Paper published in August 1972.

As in Crossman’s plan, local health authority areas were to be matched with local government boundaries. Hospitals, nursing services, health centres and general practitioners were brought under the control of the new local authorities. These measures were incorporated in the National Health Service Reorganisation Act of July 1973.

NHS England has religiously avoided use of the term “pilot” in relation to its new models of care programme, preferring vanguard, “early adopters” and “first cohort”. With bidders having been told they must have “a credible plan to move at serious pace to make rapid change in 2015”, the intent seems clear. But will these pilots which are not pilots work?

According to the “The NHS – a manager’s tale” published by the Nuffield Hospitals Provincial Trust,

“Barbara Castle took over from Keith Joseph as Secretary of State for Social Services with David Owen as her number two. They decided it was too late to stop or radically change the re-organisation due on 1st April but they displayed little enthusiasm for it. Thus the changes were launched with luke-warm political support.”

And even then the influence of McKinsey’s had been felt:

“A large multi-disciplinary steering group had been created and chaired by the then Permanent Secretary, Sir Philip Rogers. The group was supported in its work by the Management Consultants McKinsey and Co Incorporated and the Health Services Organisational Research Unit of Brunel University led by Professor Jaques. Their report, Management Arrangements for the Re-organised NHS, which was published in 1972, came to be known as The Grey Book (the colour of its cover).”

Fast forward 30 years, and, in 2012, it was reported that 

“A Mail on Sunday investigation, based on hundreds of official documents disclosed under the Freedom of Information Act, has revealed the full extent of McKinsey’s myriad links to the controversial reforms.

Many of the Bill’s proposals were drawn up by McKinsey and included in the legislation wholesale.”

I am superficially interested in the ‘new models of care’ as they apply to my speciality, dementia, but I would extremely surprised if they were built to last. Therein lies the exhaustion of the ‘planned obsolescence’ of policy in dementia.