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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.

Koopmans RT, van der Sterren KJ, van der Steen JT. The ‘natural’ endpoint of dementia: death from cachexia or dehydration following palliative care? Int J Geriatr Psychiatry. 2007 Apr;22(4):350-5.

 

Koppitz A, Bosshard G, Schuster DH, Hediger H, Imhof L. Type and course of symptoms demonstrated in the terminal and dying phases by people with dementia in nursing homes. Z Gerontol Geriatr. 2015 Feb;48(2):176-83. doi: 10.1007/s00391-014-0668-z.

 

Kuhn DR, Forrest JM. Palliative care for advanced dementia: a pilot project in 2 nursing homes. Am J Alzheimers Dis Other Demen. 2012 Feb;27(1):33-40. doi: 10.1177/1533317511432732. Epub 2012 Jan 31.

 

Large S, Slinger R. Grief in caregivers of persons with Alzheimer’s disease and related dementia: a qualitative synthesis. Dementia (London). 2015 Mar;14(2):164-83. doi: 10.1177/1471301213494511. Epub 2013 Jul 11.

 

Lawrence V, Samsi K, Murray J, Harari D, Banerjee S. Dying well with dementia: qualitative examination of end-of-life care. Br J Psychiatry. 2011 Nov;199(5):417-22. doi: 10.1192/bjp.bp.111.093989. Epub 2011 Sep 22.

 

Lee J, Cheng J, Au KM, Yeung F, Leung MT, Ng J, Hui E, Lo R, Woo J. Improving the quality of end-of-life care in long-term care institutions. J Palliat Med. 2013 Oct;16(10):1268-74. doi: 10.1089/jpm.2013.0190. Epub 2013 Sep 5.

 

Lee RP, Bamford C, Exley C, Robinson L. Expert views on the factors enabling good end of life care for people with dementia: a qualitative study. BMC Palliat Care. 2015 Jul 25;14:32. doi: 10.1186/s12904-015-0028-9.

 

Li Q, Zheng NT, Temkin-Greener H. Quality of end-of-life care of long-term nursing home residents with and without dementia. J Am Geriatr Soc. 2013 Jul;61(7):1066-73. doi: 10.1111/jgs.12330. Epub 2013 Jun 17.

 

Liew TM. Applicability of the pre-death grief concept to dementia family caregivers in Asia. Int J Geriatr Psychiatry. 2015 Nov 10. doi: 10.1002/gps.4387. [Epub ahead of print]

 

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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.

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

back-to-the-future-dates

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.

 

 

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Dementia – more than a brand? Lessons from #sharetheorange

In my second book, ‘Living better with dementia‘, with forewords by Kate Swaffer, Chris Roberts and Beth Britton, I discussed in my conclusion the branding of dementia. This discussion runs in parallel with the ‘there’s big money in dementia’ chapter in Kate Swaffer’s landmark book ‘What the hell happened to my brain‘, published only this thursday. In this groundbreaking book, Kate has discussed her life ‘beyond dementia’ (TM).

In 2012, dementia became ‘not just a disease’. It in fact became a very strong brand. At roughly the same time, Dementia Friends became a trademark on the UK trademark register. Further contemporaneously, senior people started giving talks in expensive conferences about ‘making opportunities’ in dementia. Indeed, high street companies which could demonstrate that they were ‘dementia friendly’ were achieving a considerable competitive advantage in marketing terms, whether or not they were genuinely dementia friendly. That is how ‘nudge’ in customer behaviour works in behavioural economics.

Not overselling myself either, but I happened to come top of the year in marketing in my own MBA. This I think is because my first degree was in cognitive neuroscience, so I have a longstanding interest in the relationship between cognition and behaviour. It seems that trademarks have become more than products and services, and that brands have become more than the trademarks. I attended the launch of the new Dementia UK brand in London last year, and we were given an explanation of the meaning conveyed in colours in marketing (a subject very familiar to me from international marketing, as different colours can convey different meanings according to different cultures). It is no secret that the Alzheimer’s Society is undergoing an extensive rebranding at the moment. Branding can serve to consolidate core values with a core audience.

It is therefore no surprise at all that I am interested in the new Alzheimer’s Research UK campaign called #sharetheorange.

Damage caused by dementia can reduce the brain’s weight by the equivalent of an orange, according to the presenter Christopher Eccleston in a new digital campaign for Alzheimer’s Research UK. The campaign, created by AIS London and animated by Aardman, features an emotional plea for support for the charity from the actor, whose father died from vascular dementia after fourteen years.

It uses stop-motion, the familiar technique used by Aardman Animations in Wallace and Gromit, to demonstrate how the disease attacks the brain.

“Like many of you, I’ve witnessed the devastating effects of dementia. But because many people think dementia is just a natural part of aging, they don’t realise that is something that we could one day defeat.”

The text commences with the tension between the public health message ‘it is possible to live well with dementia’ and the imagery of dementia as ‘devastating’. I myself discuss the use of the term ‘dementia sufferers’ in my discussion, and how use of negative imagery can add to the stigma and discrimination faced by people with dementia and carers – even delaying the seeking of a diagnosis, often conveniently blamed by ‘big charity’ as a fault of the medical profession. But it is useful to reinforce the idea that dementia is not a natural part of aging, and the phrase that it is “something that we could one day defeat” reinforces the war and battle imagery of ‘fighting dementia’, a slogan used by a number of Big Charity organisations. You never hear of people who have ‘won their battle against dementia’ – but then again you rarely hear of people trying to live their lives to the full in the mainstream media, with one or two striking exceptions, as that ‘does not sell copy’. Such use of “shock tactics”, in the context of a shock doctrine, is well known for subverting decision making down a particular track.

“I’m asking you to do one little thing on behalf of Alzheimer’s Research UK – just to share this film about an orange. You see the truth is dementia is actually caused by diseases just like cancer or AIDS. Alzheimer’s disease is the biggest cause of dementia. It physically attacks your brain, gradually destroying it, piece by piece, stripping away everything that makes you.. until you die.”

I found this particularly interesting. There are over 120 different types of dementia, depending on how you count them. The “Alzheimerisation” of all dementias is a long running theme in dementia, though it is true that Alzheimer’s disease is the most common cause of dementia worldwide. In practical terms, one is more likely to be fundraising for a lab investigating a type of Alzheimer’s disease, than any of the numerous other types of dementia.

Heather Wright, Executive Producer & Head of Partner Content at Aardman has been reported as saying:

“Animation is a great way of communicating difficult messages, delivering them in an easily understandable and memorable way. Using the orange as a metaphor for the brain makes this film very strong because the idea and the execution work perfectly together.”

But Eccleston continues:

“It physically attacks your brain gradually destroyed it piece by piece by piece until it strips away everything that makes you you and then you don’t in fact the brain of a person with Alzheimer’s is so damaged it weighs a hundred and forty grams less than a healthy brain.”

The starting point that the dementias are diseases of the brain is important, and is indeed this is one of the core five messages of “Dementia Friends”. But the imagery is scary, and potentially a bit of a kick in the groin to those 47 million people in the world currently living with dementia.

Whilst the ad builds up to hope for the future, my concern is identifying the current offering for people currently living with dementia. To use the orange analogy, how can you best use the segments which are left to go about your day to day life?

There are some people – like me in fact – who feel that self and identity are preserved, despite a dementia ‘disease process’, until the very end. The film makes the assumption that there is a direct link between loss of brain structural matter and overall loss of function, which is of course generally true, but there are 1000 billion neurones in the brain, many of which are in fact redundant. This redundancy therefore lends weight to the notion of cognitive resilience, and indeed is embedded in the prevention arm of policy, as education building up a buffer in some against dementia: otherwise known as “use it or lose it”. One presumes that future therapies which are effective at stopping ‘in its tracks’  the build up of toxic substances in the brain in Alzheimer’s disease prevent loss of volume of the brain (a direct link which has never been robustly shown, though intuitively correct.)

Eccleston continues,

“While scary this does prove it’s a physical disease and not just part of aging research has beaten diseases in the past and with your help research can defeat dementia so place to share the orange.”

I suppose that there’s more than one way to peel an orange.

I am mindful here of the ‘Lovewarks’ theme from Saatchi and Saatchi, and the work of Kevin Roberts.

In an article in Journal of Advertising Research in March 2006, John Pawle wrote,

“Once such theory of modem branding is the theory of “Lovemarks” as put forward by Kevin Roberts (2004), CEO of Saatchi & Saatchi. Roberts states that the idea of a brand is starting to “wear thin” and the world around it sterile.”

Pawle characterises these “lovewarks” as  “giving birth to great stories; bring the past, present, and future together; tap into people’s dreams; celebrate myths and icons; and inspire.”

Emotional memory is processed in a very different way to memory for facts and events in the brain. Stating the obvious, your cognitive processing is very much dependent on your state of arousal and motivation. This, ironically, is an observation very well known to people living with dementia as well as their significant others.

So therefore one would legitimately expect the success of this present digital ad campaign to be governed by the efficacy of the interaction of the viewer with the subject matter (high). This would make them want to “#sharetheorange”, in an ideal world making the ad ‘go viral‘.

So – at least people are talking about dementia – raising awareness of dementia. All of us in policy have our individual views about whether ‘it’s the right type of awareness’.

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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

 

 

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Look up here, I’m in heaven

It’s well known that I survived a six week coma on the Royal Free ITU in 2007, after having had a cardiac arrest and respiratory arrest simultaneously.

I am only motivated doing my work promoting wellbeing for people beyond a diagnosis of dementia (TM – Kate Swaffer’s term), and motivated by my mum’s happiness.

The lyrics of David Bowie’s “Lazarus” have enormous personal significance for me.

 

 

 

Look up here, I’m in heaven
I’ve got scars that can’t be seen
I’ve got drama, can’t be stolen
Everybody knows me now

Look up here, man, I’m in danger
I’ve got nothing left to lose
I’m so high it makes my brain whirl
Dropped my cell phone down below

Ain’t that just like me
By the time I got to New York
I was living like a king
Then I used up all my money

I was looking for your ass
This way or no way
You know, I’ll be free
Just like that bluebird

Now ain’t that just like me
Oh I’ll be free
Just like that bluebird
Oh I’ll be free

Ain’t that just like me

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How did my tweet on music and care homes end up 'going viral'?

Just before christmas, I made a quick tweet as follows.

Tweet

Since then, I have watched this tweet progressively get retweeted to the point of ‘going viral’. At the time of writing, it has had 287 ‘retweets’ and 250 ‘favourites’.

Of course, no one can predict how, why, or when a tweet might go viral, though plenty of people have speculated on this phenomenon. Here is one example.

In case you missed it, the story begins as follows.

“Pianist Edward Hardy played in a jazz quartet for almost 40 years but had no one to play with after being moved into a care home following the onset of dementia.

Care home worker Sam Kinsella helped him post an online advert to bring in musicians to jam with the talented war veteran.”

The home in Somerset, was inundated with more than 80 requests from across the UK, including from three former band mates who he hadn’t seen for 35 years. Mr Hardy had set up his first band when he returned from serving in Japan in World War II, but had become depressed when he recently moved into the care home initially leaving his wife for 75 years, Betty, 91, at home, and was diagnosed with dementia.

Apparently, he has remembered the skill of playing music and “play it so well and it’s like everything comes back to him when he’s on the piano.”

 

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War and peace

War and peace

 

I think one of the things which most surprises me about life in general is how binary or polar things can become. One person’s valid scoop is another person’s political manipulation. Decisions we make are simplistically ‘Marmite’.

I don’t believe you can wake up one morning ‘with dementia’, when you didn’t ‘have it’ on the previous day. I do think it’s possible for fit the criteria one day with you not having met them previously. This brings up the issue of how we define the various dementias.

And the diagnosis does matter. For example, if you get re-diagnosed as ‘minimal cognitive impairment’ instead of dementia this can make quite a big impact on your life, especially if you have lived for years as a person with dementia.

I don’t think NHS England appears to care enough about validating or confirming diagnoses of dementia. I have been surprised by how many people living with dementia are not sure where the diagnosis came from, nor even who made the diagnosis.

But I do worry when there are powerful external factors at force. I think we get onto dangerous territory if you incentivise doctors financially into making a diagnosis. This NHS England policy was not only unethical, but morally repugnant. I agree on the need to ‘close the diagnosis gap’, but I do not agree on giving people who don’t have a diagnosis of dementia a diagnosis.

Overall things, though, are going well. There’s much more meaningful involvement, as opposed to meaningless involvement, of people living with dementia and carers now in research and service provision. I really do wish England and Wales well if they develop a working group in the future. The Scottish lead has been very useful here.

Scotland often, I feel, leads England through the work of Alzheimer Scotland. For example, there is a much more coherent construct of integrated care through their “eight pillars”. In comparison, efforts through the Better Care Fund in England have been piecemeal, unpredictable and sometimes unimpressive.

Scotland now, I feel, can strengthen their lead on human rights. Their influence on Alzheimer Europe is not insubstantial, but Alzheimer Europe can become emboldened on taking a lead on human rights as Netherlands assumes the Presidency from Luxembourg.

I wish to applaud Prof Peter Mittler for his brilliant work. From my viewpoint as an academic, it will be hugely useful if we can look at quality of life and wellbeing in the WHO sustainable cities. I have high hopes from the Dementia Alliance International, and I am genuinely enthused by the lead taken by Glenn Rees recently appointed as Chair of Alzheimer’s Disease International.

With human rights, you get them all. You can’t choose, as such, which rights apply to you. Thanks to the UN, they all do under the UN Universal Declaration of Human Rights.

But things might not be all or nothing ultimately for personal budgets. The power of the National Health Service comes from a comprehensive service, free at the point of use, but this is undermined if there is creeping rationing of services (possibly at the individual level through personal budgets).

Things might not be all or nothing if a universal NHS is somehow bolted onto a means-tested social care framework. We’ve got to stop airbrushing ‘social care’ into ‘and care’, and we’ve got to think about pumping money into social care, into promoting wellbeing.

I dare say the binary articulation of the debate is what ‘campaigns department’ of Big Charity advises – a simple message which is easy to brand or sell.

But this is a disservice to us all.

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