Scoping exercise for a new book for junior doctors on dementia

new book

 

Recent personal experience has allowed me to witness excellent acute hospital care. But I have also witnessed some examples of how clearly hospitals are potentially unpleasant environments for patients who happen to be living with dementia, and also their closest who accompany for them.

For this reason, I’d like to write a short book on dementia for junior doctors. I intend to publish the book with UCL Press, which will help to ensure high standards in copyediting and other production. I am mindful that hospitals are not the only venue of service provision, training or research (for example) for dementia, and the book should hopefully be of use to junior doctors not in employment, in primary care, in hospices, mental health settings, care homes or elsewhere. I am also, however, mindful of my college (Royal College of Physicians) wishing to train junior doctors able to provide the highest quality in dementia care if they need to.

I don’t wish to write a book focused to help them pass their higher professional exams. I have actually done this for the MRCP as it happens. But I would like to write a book which would be useful as they go about their work on the wards.

The book would be not for profit – but rather be a freely available pdf a valuable online. I was part of a generation which did not have to pay for his university education. Things are totally different now where a medical training can leave people in debt for years.

I am more concerned about publishing a book which is of practical use to patients with dementia, their friends, families and carers (there might be overlap in this). I want the book to be easy to read, not bogged down overly in detail, and be holistic in outlook. Hopefully the book will be useful for junior doctors as they navigate through concerns about the diagnosis itself, or subsequent care and support. For example, due to constraints of employment and training, junior doctors might be unaware of what other health professionals do, or what the needs of carers might be.

Please free to contribute on the form – you can do so anonymously if you so desire.

 

 

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.

 

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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

 

 

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

telehealth

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.

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

Untitled-16

 

I am currently working on this third book on dementia.

 

 

These therefore follow on from my previous books ‘Living well with dementia: the importance of the person and the environment’ (CRC Press, 2014) and ‘Living better with dementia: good practice and innovation for the future’ (Jessica Kingsley Publishers, 2015).

I am honoured that the book will have forewords from Prof Sube Banerjee, Professor of Dementia, who co-authored the 2009 English dementia strategy, Lisa Rodrigues and Lucy Frost.

Whilst recent years have witnessed massive progress in dementia friendly communities in the UK and elsewhere, there has also been a greater scrutiny of ‘post diagnostic care’. This book reviews the evidence for enhancing health and wellbeing for people living with dementia, and will be useful for anyone designing, researching or using these services. The quality of residential care settings is intimately related to the philosophy and culture of care, but there is growing recognition that residential homes are part of an extended system of the provision of healthcare including the acute hospital. People living with dementia are entitled to the best standards of health care, for both physical and mental health, but also need their life story and identity to be respected. The book concludes by evaluating critically what features of the healthcare system might be desirable to encourage independent living (including at home) and integrated health, and why palliative care and specialist nursing must be a key factor in the design of care pathways at both a national and local level.

A detailed consideration of end of life care and life story, whilst introduced in this text, is beyond the scope of this book. They are covered elsewhere in detail by future books from Jessica Kingsley Publishers.

Review of my book ‘Living better with dementia’ in Mental Health Today

Bk2

Many thanks to Fenella Lemonsky (@organiclemon) for this helpful review of my book in “Mental Health Today) [here is the link to the original article.]

I find reviews like this a useful steer on future work. Academics can be notorious in misjudging the ‘mood music’ of the main drivers behind the service: people who use the services, which in my case are people living with dementia, their friends and family and other carers. I am in a privileged position in having access to thousands of peer-reviewed papers, but also feel that I have learnt a lot about the dementias from people living after a diagnosis. My knowledge of dementia has vastly improved since I took myself away from the medical lens, and adopted a viewpoint of other professionals and practitioners and people living with disability.

 

The Forewords to this text are by Kate Swaffer (@KateSwaffer), Chris Roberts (@mason4233) and Beth Britton (@BethyB1886).

 

The book is on Amazon here.

 

The review:

 

Shibley Rahman, 2014, CRC Press, ISBN 978-1908911971, £29.99

There has been much written and spoken about dementia in the media recently as a result of the government’s Dementia Strategy, which aims to help those with dementia, their families, professionals and carers be more responsive to needs.

In this context, Living Better with Dementia, by Dr Shibley Rahman, a dementia expert who is qualified in medicine, neuroscience and law, is highly relevant.

Initially, Rahman talks about the stigma of dementia and how this has remained through the past century, despite dementia becoming better understood and having a more positive outlook in recent years. While dementia and the whole management perspective can appear a challenge as the older population survives longer, this book is encouraging and positive. Specific medication that delays the onset of dementia symptoms and other medication like antipsychotics are discussed at length, including their use in nursing and care homes and how specific practices that have no evidence base can be challenged.

Two chapters that for me stuck out as very important were on young onset dementia and on antipsychotics and innovation. Young onset dementia was first explained to me at the author’s book launch, where nurse lecturer Kate Swaffer from Australia, who has young onset dementia, gave a moving talk. The impact is huge for the individual, their family and peer network as well as professionals. It affects employment, career opportunities and has a huge stigma attached to it as it is still often misunderstood. This is all discussed in the book.

The use of antipsychotics and care homes is also discussed at length. This is an important chapter, especially for those who look after those going into residential care, and it can enable them be on alert to good practice and how to spot where medication is used inappropriately. Antipsychotics use in care homes is a complex issue. In many cases careful use can ease distress and agitation, but there seems to be concerning evidence that there is over-prescribing of antipsychotics where behavioural treatments are more appropriate. Using extensive research, Rahman explains why using antipsychotics needs careful thought.

Other chapters focus on deprivation of liberty, sporting memories, global view and leadership strategies.

This is a well-written, extensively researched, easy to read and important book for anyone interested or working with dementia.

Rating: Highly recommended.

Review by Fenella Lemonsky, mental health service user researcher

My book ‘Living well with dementia’ wins first prize for health and social care in the 2015 BMA Book Awards

Recently, my friends have been trying to motivate me to tell me that I should consider writing and researching about the quality of life as a full time job. I had recently been feeling as if my work was being largely unnoticed, compared to the usual players who frequent the conferences and the limelight. So it genuinely was a massive shock that my first book ‘Living well with dementia: the importance of the person and the environment’ was judged as first in the category of health and social care for the BMA Book Awards 2015. The book was published in January 2014, and remains one of the few books which gives an overview of the living well with dementia approach in English dementia policy. It’s fair to say that medics exhibited challenging behaviour in reaction to it, as it was the counterpoint to their comfortable medical model of dementia. I instead set the scene effectively for my second book ‘Living better with dementia: good practice and innovation‘ which is a more discursive look at the social model of disability, and its implications for domestic and global policy. I once told one of my regulators, the General Medical Council, that I had received excellent feedback on the book including from people living with dementia. I should like to mention particularly Kate Swaffer and Chris Roberts, who have always remained clear, from the outset, that they enjoyed the book and thought it to be of very high quality. This has kept me highly motivated, even when I have been feeling frustrated at the whole initiative.

 

 

I should like also to thank Prof John Hodges, Prof Facundo Manes and Sally Ann Marciano, who kindly did me the honour of writing the Forewords for this book. They can be viewed here.

 

The BMA Medical Book Awards take place annually to recognise outstanding contributions to the medical literature.

Prizes are awarded in 21 categories, with an overall BMA Medical book of the year award made from the category winners.

The judging panel awards books for their applicability to audience, production quality and originality.

The BMA Medical Book Awards were held on Thursday 3 September 2015

Download the 2015 Book Awards ceremony programme

The full list of prizes by category is here.

 

 

Category result

Health and social care

Community care, health promotion, health prevention, management, health services, medico-politics, medico-legal medicine, social medicine.

First prize

  • Living Well with Dementia: The Importance of the Person and the Environment for Wellbeing
    Shibley Rahman—Radcliffe Publishing, January 2014. ISBN: 9781908911971. £29.99

Highly commended

  • Evaluating Improvement and Implementation for Health
    John Øvretveit—McGraw-Hill Education/Open University Press, August 2014. ISBN: 9780335242771. £26.99
  • Human Factors in Healthcare: Level 1
    Debbie Rosenorn-Lanng—Oxford University Press, February 2014. ISBN: 9780199670604. £24.99
  • Seeing Beyond Dementia: A Handbook for Carers with English as a Second Language
    By Rita Salomon—Radcliffe Publishing, January 2014. ISBN: 9781846198922. £21.99
  • The Cities Report
    by UNAIDS—UNAIDS, December 2014. ISBN: 9789292530662. Free
  • The Sociology of Health and Medicine: A Critical Introduction 2nd Edition
    by Ellen Annandale—Polity, August 2014. ISBN: 9780745634623. £22.99

 

 

What the judges said:

Living Well with Dementia: The Importance of the Person and the Environment for Wellbeing

Shibley Rahman – Radcliffe Publishing, January 2014 ISBN: 9781908911971 £29.99

All public and health care professionals, patients, their families and friends

This unique guide provides a much needed overview of dementia care. With a strong focus on the importance of patients and families, it explores the multifaceted meaning behind patient wellbeing and its vital significance in the context of national policy. Adopting a positive, evidence based approach, the book dispels the bleak outlook on dementia management. Its person-centred ideology considers fundamental areas such as independence, leisure and other activities, and end-of-life care – integrating the NICE quality standard where relevant. It also places great emphasis on patient environment including practical home and ward design, the importance of gardens, and sensory considerations. The objective is to examine the number of people in the UK who currently have dementia and the cost that this places on the health care system. In addition to analysing the scale of this condition, it touches on the experiences of a person with dementia and how this effects their family, friends and those caring for them in an effort to prepare those facing this diagnosis. This unique guide provides a much needed overview of dementia care. Offers a highly practical and unique assimilation of theory and patient-centred practice.

“I would recommend this book 100%. It just makes sense to read. This will appeal to so many professionals going to be involved in the care of the elderly. And anyone who is doing research in this field should go through this book too. It brings together so many aspects of dementia care under one setting: an amalgamation of resources and guidelines. This book is targeted at anyone who is interested in public health, end-of-life care, dementia management and anyone in geriatrics really. It is a contemporary evidence-based textbook which brings together the concept of ‘wellbeing’ in the field of dementia care. This book is a really good read for any clinician who deals with elderly patients as it really opens your eyes to a the outside factors which play such a massive role in the care of the patient, such as the wellbeing of the carer, the psychological aspects of care, the public health perspective, economic aspects and so on. It also gives really thorough reference lists for every chapter so that it is very easy to go in to read a chapter and then look up the data to support it. It is an adequately easy read, there are many definitions. The layout of the book makes it easier to look up specific chapters without having to read everything before, but it also reads well if you read the whole book. I think this book would work well for anyone who is writing a dissertation, public health, or anyone who is doing a presentation on this topic as it is a very resourceful and complete book. The book really goes through all its objectives in a very clear and thorough manner. It is about the multifaceted approach to dementia care, and how to maintain this wellbeing of the patient, care changes, as does requirements and expectations as the disease progresses. As clinicians there are many things we can take from this book and apply to daily practice. For example, when a patient is been seen, it would be worthwhile making sure that the carer/family member is also managing as they found that the ‘psychological health of carers of people with dementia was impaired with social interaction and recreation most affected’. It is also a very good reminder for anyone who already practices well. The thing with dementia care is that, medical textbooks only really cover the types, pathologies, diagnosis and management where, really the contents of the whole of this book comes under a small paragraph as ‘social care/financial care/respite care/end-of-life’. But in reality, it is this whole idea of the wellbeing of the patient and their support network that we are working towards, and it does not stop at diagnosis and sending them away with a few things to take and do. This book opens your eyes how extensive dementia care can be. It is a complete text on the multifaceted approach to wellbeing although order to make it 100% complete, maybe a chapter on the classic dementia signs, symptoms, progression, pathologies, diagnoses, treatments.”

References for my last book ‘Enhancing health for living with dementia: care homes and care at home’

The references are given as below. This will give you a good flavour of the topics I wish to cover in my final book.

I am honoured that the Forewords to my book will be written by Prof Sube Banerjee, Chair in Dementia at Brighton and Sussex Medical School, Lisa Rodrigues and Lucy Frost.

 

stub

 

Alderwick, H, Robertson, R, Appleby, J, Dunn, P, Maguire, D (on behalf of the King’s Fund (2015)) Better value in the NHS The role of changes in clinical practice. http://www.kingsfund.org.uk/publications/better-value-nhs

 

Alldred DP, Standage C (2011) Medication errors in care homes. Nursing Times; 107: 24, early online publication.

 

Alzheimer’s Society (2015) Dementia 2015: aiming higher to transform lives. http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=2700

 

Bahar-Fuchs A, Clare L, Woods B. Cognitive training and cognitive rehabilitation for persons with mild to moderate dementia of the Alzheimer’s or vascular type: a review. Alzheimers Res Ther. 2013 Aug 7;5(4):35. Review.

 

Banerjee S. Multimorbidity–older adults need health care that can count past one. Lancet. 2015 Feb 14;385(9968):587-9.

 

Bartlett, P. Sex, Dementia, Capacity and Care Homes Liverpool Law Rev (2010) 31:137–154 DOI 10.1007/s10991-010-9077-6, available at http://eprints.nottingham.ac.uk/1440/1/Sex_Capacity_and_Care_Homes_(published_version).pdf.

 

Burns, A. (2014) Commentary by NHS England: Don’t let care home residents slip through the dementia net – Alistair Burns https://www.england.nhs.uk/2014/12/18/alistair-burns-12/

 

Cancer Research UK (2015) Achieving world-class cancer outcomes: a strategy for England 2015-20. http://www.cancerresearchuk.org/sites/default/files/achieving_world-class_cancer_outcomes_-_a_strategy_for_england_2015-2020.pdf

 

Care England (2015) Care England calls for funding to support Living Wage (published on June 25, 2015) http://www.careengland.org.uk/care-england-calls-funding-support-living-wage

 

Care Quality Commission (2014)  Cracks in the pathway. October 2014. http://www.cqc.org.uk/sites/default/files/20141009_cracks_in_the_pathway_final_0.pdf

 

Elliot V, Williams A, Meyer J. Supporting staff to care for people with dementia who experience distress reactions. Nurs Older People. 2014 Aug;26(7):22-6. doi: 10.7748/nop.26.7.22.e616.

 

Fiske, J., Griffiths, J., Jamieson, R., Manger, D. (2000). Guidelines for oral health care for long stay patients and residents. Gerodontology, 17, 5564.

 

Goodman C, Davies SL, Gordon AL, Meyer J, Dening T, Gladman JR, Iliffe S, Zubair M, Bowman C, Victor C8, Martin FC. Relationships, expertise, incentives, and governance: supporting care home residents’ access to health care. An interview study from England. J Am Med Dir Assoc. 2015 May 1;16(5):427-32.

 

Guss, R. and the British Psychological Society (2014). Clinical Psychology in the Early Stage Dementia Care Pathway (Collated on behalf of the Faculty of the Psychology of Older People. A collaboration of people living with dementia and the Dementia Workstream Expert Reference Group.) https://www.bps.org.uk/system/files/user-files/DCP%20Faculty%20for%20the%20Psychology%20of%20Older%20People%20(FPoP)/public/clinical_psychology_in_early_stage_dementia_care_pathway.pdf

 

Health Foundation (2012) A strong call to action. http://www.health.org.uk/newsletter/challenge-improve-medication-safety-care-homes#sthash.i6DVulZf.dpuf

 

Humphries R. Integrated health and social care in England–Progress and prospects. Health Policy. 2015 Jul;119(7):856-9.

 

Iliffe S, Davies SL, Gordon AL, Schneider J, Dening T, Bowman C, Gage H, Martin FC, Gladman R, Victor C, Meyer J, Goodman C. Provision of NHS generalist and specialist services to care homes in England: review of surveys. Prim Health Care Res Dev. 2015 May 5:1-16. [Epub ahead of print]

 

Johnston B, Rogerson L, Macijauskiene J, Blaževičienė A, Cholewka P. An exploration of self-management support in the context of palliative nursing: a modified concept analysis. BMC Nurs. 2014 Jul 23;13:21.

 

Jones L, Candy B, Davis S, Elliott M2, 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.

 

Learner, S. (2014) Profile: ‘Caring for my father was a privilege I wished had never ended,’ says dementia campaigner Beth Britton (February 2014) http://www.carehome.co.uk/news/article.cfm/id/1563115/profile-dementia-campaigner-beth-britton

 

Lundgren D, Ernsth-Bravell M, Kåreholt I1. Leadership and the psychosocial work environment in old age care.Int J Older People Nurs. 2015 Jun 15.

 

McCormack B, Roberts T, Meyer J, Morgan D, Boscart V. Appreciating the ‘person’ in long-term care. Int J Older People Nurs. 2012 Dec;7(4):284-94.

 

McKeown J, Ryan T, Ingleton C, Clarke A.’You have to be mindful of whose story it is': the challenges of undertaking life story work with people with dementia and their family carers. Dementia (London). 2015 Mar;14(2):238-56.

 

Miranda-Castillo C, Woods B, Orrell M. People with dementia living alone: what are their needs and what kind of support are they receiving? Int Psychogeriatr. 2010 Jun;22(4):607-17.

 

NHS England (2014). Five year forward view: Time to deliver. London: NHS. http://www.england.nhs.uk/wp-content/uploads/2015/06/5yfv-time-to-deliver-25-06.pdf

 

NICE commissioning guides [CMG48] Support for commissioning dementia care Published date: April 2013, https://www.nice.org.uk/guidance/cmg48

 

NICE quality standard [QS50] Mental wellbeing of older people in care homes Published date: December 2013 https://www.nice.org.uk/guidance/qs50

 

Oliver D, Healey F, Haines TP. Preventing falls and fall-related injuries in hospitals. Clin Geriatr Med. 2010 Nov;26(4):645-92.

 

Sampson EL, van der Steen JT, Pautex S, Svartzman P, Sacchi V, Van den Block L, Van Den Noortgate N. European palliative care guidelines: how well do they meet the needs of people with impaired cognition? BMJ Support Palliat Care. 2015 Sep;5(3):301-5.

 

UK Home Care Association. How to choose care.

http://www.ukhca.co.uk/choosingcareadvice.aspx

 

UK Homecare Association (2013). UKHCA Dementia Strategy and Plan, February 2013. Wallington: UK Homecare Association.

 

Zenthöfer A, Cabrera T, Rammelsberg P, Hassel AJ. Improving oral health of institutionalized older people with diagnosed dementia. Aging Ment Health. 2015 Feb 13:1-6.

 

A personal thank you to Prof John Hodges from me – and congratulations for his #AAIC2015 lifetime achievement award

I am delighted that Prof John Hodges has been honoured in this year’s #AAIC2015.

John took a major rôle in guiding me over my own Ph.D. thesis at the University of Cambridge on the M.B./Ph.D. programme under Prof Tim Cox.

He is an unique individual in every sense.

John is a very generous man with his kindness and attention. He also has a keen interest in jazz music.

I remember chatting for a long time with John on a rather bumpy boat trip for the World Federation of Neurology in 2010 in Turkey on the Bosphorus. The event was hosted by Prof Facundo Manes, another student who trained under John, now head of department in the Institute of Cognitive Neurology in Argentina.

I went to see Prof Oliver Piquet, this year, in Sydney; who equally knows John well.

His contribution to the clinical work and academic research of frontotemporal dementia has been second to none in the world. He is extremely well respected by other specialists in this field. He, in fact, helped to train many of them.

As a personal friend, too, he has never been judgmental, and has never been equivocal in his support of me. In fact, he has been an instrumental part in me being a medical doctor in the UK jurisdiction.

I am honoured that I have been often quoted in his own academic papers. I am indeed quoted in the Foreword to the hugely popular ‘Cognitive assessment for clinicians‘. He in fact quotes my Brain paper in the chapter on dementia in the current Oxford Textbook of Medicine. Both books are published by the Oxford University Press.

The #AAIC2015 statement reads as follows:

John Hodges, M.D., Professor of Cognitive Neurology at the University of New South Wales, Australia. Dr. Hodges has been a longtime researcher of cognition in the context of neurodegenerative disorders. He has authored more than 450 journal articles and five books relating to cognition and dementia. His current research focuses on frontotemporal dementia.

John’s NeuRA page is here.

 

John’s Foreword to my first book on dementia is as follows.

Hodges foreword

 

My second book on dementia is being published tomorrow, “Living better with dementia: good practice and innovation for the future“.

Finally, I admire John’s interest in jazz.

On advising me about an outlook of life, he once told me, “Just remember Shibley,  if he you get hit by a bus, there’ll always be someone to take your place professionally.” Of course John meant this nicely – I think John meant that the vast majority of us aren’t as disposable as we would like to think.

I have never forgotten these words. Indeed, my life’s philosophy is actively guided by them.

‘Living better’ can become a reality for people with dementia if they lead policy

In the penultimate chapter in my book, I provide a reasoned case why people living with dementia should be given a chance to articulate details of ‘policy’.

Virtually all of us who attended the event (“A conversation with Kate and Shibley” described in this previous blogpost of mine on this blog) found the afternoon ‘inspiring’ or the such like. Of course, this can be expected from fifty misguided hyperbolic attendees; but in fairness to us, we all had some sort of knowledge about dementia (in fact six of the delegates definitely could reasonably be called ‘experts’ living with dementia, so are experts in their dementia in their time.)

I brought up the idea that we appear to have a new national policy document every year almost. The wheel keeps on being reinvented. I cited the work of Wendy Hulko (@IncredibleHulko), that the views of people living with dementia had been systematically disenfranchised. I also cited the work of Ruth Bartlett (@RuthLBartlett) to do with reframing the narrative, e.g. away from a person being defined by his or her dementia.

The notion that “nothing can be done” is as untrue now, as it is untrue for the time in the future where we do happen to have stumbled across “cures” for the dementias in a piecemeal fashion in times to come. Here I’m arbitrarily defining a cure as a practical means of reliably stabilising a disease process of a dementia. For example, various psychological therapies have been demonstrated to improve cognitive functioning as well as other factors such as confidence and wellbeing. It’s likely that such psychological reablement and rehabilitation may provide some of resilience-boosting effect through the maintenance of appropriate activity-based neural connections.

The shift towards identifying the precise cognitive ‘make up’ of a person living with dementia allows identification of the precise abilities that a person with dementia at a given time has. This is a more productive use of the ‘follow up’. If in England services were commissioned fulfilling the s.1(1) Care Act (2014), to promote wellbeing, we could re-orient the Titanic that is the deficits-based medical model.

I gave a presentation on citizenship and living better with dementia as part of an event, co-hosted with Kate Swaffer, last Saturday. The slides for this presentation are here.

I am delighted that Chris Roberts accepted my invitation to give a brief speech in support of my book. Chris wrote one of the Forewords to the book (the other two are written by Kate Swaffer [@KateSwaffer] and Beth Britton [@BethyB1886]).

Both Kate and Beth need no introduction for their campaigning about dementia. I strongly commend to you blogs by Kate (here) and Beth (here) which will begin to introduce you to their substantial output.

Somebody in the audience, based on substantial experience of looking after her mum with dementia, warned against the volume of policies and strategies. This is not the first time I’ve heard this criticism, which invariably starts with, “I don’t know the details of these policies, but I do know what happened with mum”. Such feedback really is gold-dust.

That’s because in forming our views about how to progress with dementia care, there’s a feeling that “people don’t do ‘macro'”. In other words, people are more concerned about their living standards or zero hour contracts than they are about the national GDP. A person might be more interested in his or her personal wellbeing as a person living with dementia or carer, than the design of the post-diagnostic support systems (howeverso defined).

Through having completed two books on the subject of wellbeing in dementia, I’ve decided that there is a place for an overview of the general landscape. This is hugely fortified by personal experiences of people living with their dementias. Kate Swaffer is ‘unusual’ in that she can make sense of her living with dementia in the context of a huge and varied personal and professional background.

To work out what might be the lived experience of a Frenchman, you might ask a Parisian for an account (but even then this is a highly personal account for that particular Frenchman in his time and place). Or you can learn about the history, language, culture, infrastructure or geography of France as background, and still entirely miss what is important to that Frenchman. But that is not to say the cultural back story is entirely irrelevant.

But back to my primary point.

I think the way of turning around the iceberg is for people living with dementia leading on policy, not being ‘involved’ or ‘engaged’ with it at a superficial level. I’ve been struck by the remarkable success of Wendy Mitchell (@WendyPMitchell) in promoting research in dementia, amongst many other projects; or Ken Howard (@KenHowardUK) and Dr Jennifer Bute in a alerting people to what it’s like to live with dementia; or Hilary Doxford, as a member of the World Dementia Council, in alerting people to what matters to people living with dementia in global policy. I thank them all for their contributions on Saturday.

One of the many things which were discussed ultimately in how the media cannot be entirely to be blamed for negative perceptions of living with dementia. Part of a solution is for people living with dementia to present positive stories (as indeed Chris Roberts – @mason4233 – provided in a recent Alzheimer’s Society magazine, or Ken Clasper – @Ken_Kencdid too.)

One mechanism for people living with dementia to participate in membership of national bodies. That’s why I am hoping that some individuals will put themselves forward (e.g. living with dementia or in a carers’ rôle) for the committee revising the NICE CG42 dementia guideline; applications close at 5 pm on 5 August 2015

I hope, if you haven’t already done so, engage with these issues at a personal level in some way. I think it’s an enormous honour and privilege to be allowed a window into people’s lives. Dementia for me is not a medical ‘problem'; it is an opportunity for us to show, socially, solidarity and justice.

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Kate did a separate – (much better in my personal view) – presentation. One slide from it says it all for me.

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(“Living better with dementia” by me will be published in the UK on Jult 21st 2015, pre-order link here.)