Making decisions for people with dementia who lack capacity: Qualitative study of family carers in UK

BMJ (Online)

Volumn 341, Issue 7771, 2010, Pages 494-

  Livingston, Gill ^a   Leavey, Gerard ^b   Manela, Monica ^a   Livingston, Deborah ^a   Rait, Greta ^c   Sampson, Elizabeth ^a   Bavishi, Shilpa ^a   Shahriyarmolki, Khodayar ^a   Cooper, Claudia ^a  

^a UNIVERSITY COLLEGE LONDON   (United Kingdom)

^b UNIVERSITY OF ULSTER   (United Kingdom)

^c MEDICAL RESEARCH COUNCIL   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; AGED; ARTICLE; CAREGIVER; COMPETENCE; CONSULTATION; DECISION MAKING; DEMENTIA; FAMILY; FEMALE; HEALTH CARE ACCESS; HUMAN; INTERVIEW; MAJOR CLINICAL STUDY; MALE; MEDICOLEGAL ASPECT; MENTAL CAPACITY; NURSING HOME; PATIENT REFERRAL; PRIORITY JOURNAL; PSYCHOSOCIAL CARE; QUALITY OF LIFE; RESUSCITATION; TERMINAL CARE; TREATMENT PLANNING;

AUTOMOBILE DRIVING; CAREGIVERS; DECISION MAKING; DEMENTIA; FAMILY RELATIONS; FEMALE; HEALTH EDUCATION; HUMANS; MALE; MENTAL COMPETENCY; MIDDLE AGED; NURSING HOMES; PATIENT CARE PLANNING; PATIENT SELECTION; RESUSCITATION ORDERS; TERMINAL CARE;

EID: 77956284389     PISSN: None     EISSN: 17561833     Source Type: Journal    
DOI: 10.1136/bmj.c4184     Document Type: Article

References (18)

1. Ferri CP, Prince M, Brayne C, Brodaty H, Fratiglioni L, Ganguli M, et al. Global prevalence of dementia: a Delphi consensus study. Lancet 2005;366:2112-7.
2. Hirschman K, Kapo J, Karlawish J. Why doesn't a family member of a person with advanced dementia use a substituted judgment when making a decision for that person? Am J Geriatr Psychiatry 2006;14:659-67.
3. Mezey M, Kluger M, Maislin G, Mittelman M. Life sustaining treatment decisions by spouses of patients with Alzheimer's disease. J Am Geriatr Soc 1996;44:144-50.
4. Davies S, Nolan MR. 'Making the best of things': relatives' experiences of decisions about care-home entry. Ageing Soc 2003;23:429-50.
5. Alzheimer Research Forum. AD research participation: informed consent complicates trials, part 1. 2008. www.alzforum.org/new/detail.asp?id=1867.
6. Butcher HK, Holkup PA, Park M, Maas M. Thematic analysis of the experience of making a decision to place a family member with Alzheimer's disease in a special care unit. Res Nurs Health 2001;24:470-80.
7. Wackerbarth S. The Alzheimer's family caregiver as decision maker: a typology of decision styles. Gerontologist 2002;42:340.
8. Hansen L, Archbold PG, Stewart BJ. Role strain and ease in decision-making to withdraw or withhold life support for elderly relatives. J Nurs Scholarsh 2004;36:233-8.
9. Department of Health. The Mental Capacity Act 2005. 2005. www.opsi.gov.uk/acts/acts2005/ukpga-20050009-en-1.
10. Shah AK, Heginbotham C, Fulford B, Banner N. The application of the Mental Capacity Act 2005 among geriatric psychiatry patients: a pilot study. Int Psychogeriatr 2009;5:922-30.
11. Potkins D, Bradley S, Shrimanker J, O'Brien J, Swann A, Ballard C. End of life treatment decisions in people with dementia: carers' views and the factors which influence them. Int J Geriatr Psychiatry 2000;15:1005-8.
12. Coffey A, Attkinson P. Making sense of qualitative data; complementary research strategies. Sage, 1996.
13. Miles MB, Huberman AM. Qualitative data analysis: an expanded sourcebook. 2nd ed. Sage, 1994.
14. Smith JA. Beyond the divide between cognition and discourse: using interpretative phenomenological analysis in health psychology. Psychology and Health 1996;11:261-71.
15. Nuffield Council on Bioethics. Dementia: ethical issues. Nuffield Council on Bioethics, 2009.
16. Department of Health. Living well with dementia: a national dementia strategy. DH, 2009.
17. Wald C, Fahy M, Livingston G, Walker Z. What to tell dementia caregivers - the rule of threes. Int J Geriatr Psychiatry 2003;18:313-7.
18. Selwood A, Katona C, Lyketsos C, Johnston K, Livingston G. A systematic review of the effect of psychological approaches to family caregivers of people with dementia. J Affect Disord 2007;101:75-89. (Pubitemid 46887614)