Everyday decision-making in dementia: Findings from a longitudinal interview study of people with dementia and family carers

International Psychogeriatrics

Volumn 25, Issue 6, 2013, Pages 949-961

  Samsi, Kritika ^a   Manthorpe, Jill ^a  

^a KING'S COLLEGE LONDON   (United Kingdom)

Author keywords

autonomy; carers; decision making; dementia

Indexed keywords

AGED; ARTICLE; CLINICAL ARTICLE; CLINICAL ASSESSMENT; DECISION MAKING; DEMENTIA; FEMALE; HEALTH CARE PERSONNEL; HUMAN; LONGITUDINAL STUDY; MALE; PATIENT AUTONOMY; PLANNING; THEMATIC ANALYSIS;

AGED; AGED, 80 AND OVER; ATTITUDE OF HEALTH PERSONNEL; CAREGIVERS; DECISION MAKING; DEMENTIA; ENGLAND; FAMILY; FEMALE; HUMANS; INTERVIEWS AS TOPIC; LONGITUDINAL STUDIES; MALE; PERSONAL AUTONOMY; PROXY; QUALITATIVE RESEARCH; RETROSPECTIVE STUDIES; WALES;

EID: 84876696126     PISSN: 10416102     EISSN: 1741203X     Source Type: Journal    
DOI: 10.1017/S1041610213000306     Document Type: Article

References (31)

1. Adler, G. (2010). Driving decision-making in older adults with dementia. Dementia, 9, 45-60.
2. Askham, J. (1994). Marriage relationships of older people. Reviews in Clinical Gerontology, 4, 261-268.
3. Barbas, N. R. and Wilde, E. A. (2001). Competency issues in dementia: medical decision-making, driving and independent living. Journal of Geriatric Psychiatry and Neurology, 14, 199-212.
4. Bond, J., Corner, L., Lilley, A. and Ellwood, C. (2002). Medicalization of insight and caregivers' responses to risk in dementia. Dementia, 1, 313-328.
5. Braun, V. and Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77-101.
6. Briggs, K., Askham, J., Norman, I. and Redfern, S. (2003). Accomplishing care at home for people with dementia: using observational methodology. Qualitative Health Research, 13, 268-280.
7. Brod, M., Stewart, A. L., Sands, L. and Walton, P. (1999). Conceptualization and measurement of quality of life in dementia: the Dementia Quality of Life Instrument (DQoL). The Gerontologist, 39, 25-35.
8. Caron, C. D., Griffith, J. and Arcand, M. (2005). End-of-life decision-making in dementia: the perspective of family caregivers. Dementia, 4, 113-136.
9. Clare, L. (2003). Managing threats to self: awareness in early stage Alzheimer's disease. Social Science and Medicine, 5, 1017-1029.
10. Edge, J. (2001). Who's in Control? Decision-Making by People with Learning Difficulties who Have High Support Needs. York, UK: Joseph Rowntree Foundation.
11. Holm, S. (2001). Autonomy, authenticity, or best interest: everyday decision-making and persons with dementia. Medicine, Health Care and Philosophy, 4, 153-159.
12. Kane, R. A. et al. (2003). Quality of life measures for nursing home residents. Journals of Gerontology: Medical Science, 58A, 240-248.
13. Livingston, G. et al. (2010). Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK. BMJ, 341, c4184.
14. Macquarrie, C. R. (2005). Experiences in early stage Alzheimer's disease: understanding the paradox of acceptance and denial. Aging and Mental Health, 9, 430-441.
15. Manthorpe, J., Samsi, K. and Rapaport, J. (2012). More of a leg to stand on: views and usage of the Mental Capacity Act 2005 among local Alzheimer's Society and Caregiver groups: findings from the EVIDEM MCA project. Aging and Mental Health, 16, 102-109.
16. Ministry of Justice (2007) Code of Practice of the Mental Capacity Act 2005. London: Department for Constitutional Affairs, Ministry of Justice. Available at: http://www. justice. gov. uk/downloads/protecting-thevulnerable/ mca/mca-code-practice-0509. pdf; last accessed 6 February 2013).
17. Padula, C. A. and McNatt, M. (2004). Older married couples and health promotion: joint decision-making process for long-term spouses. Journal of Gerontological Nursing, 30, 38-46.
18. Pearce, A., Clare, L. and Pistrang, N. (2002). Managing sense of self: coping in the early stages of Alzheimer's disease. Dementia, 1, 173-192.
19. Ready, R. E. and Ott, B. R. (2003). Quality of life measures for dementia. Health and Quality of Life Outcomes, 1, 1-9.
20. Sessums, L. L., Zembrzuska, H. and Jackson, J. L. (2011). Does this patient have medical decision-making capacity? Journal of American Medical Association, 306, 420-427.
21. Smith, J. (2004). Reflecting on the development of interpretative phenomenological analysis and its contribution to qualitative research in practice. Qualitative Research in Psychology, 1, 39-54.
22. Stanley, N. and Manthorpe, J. (2009). Small acts of care: exploring the potential impact of the Mental Capacity Act 2005 on day-to-day support. Social Policy and Society, 8, 37-48.
23. Steeman, E., de Casterlé, B. D., Godderis, J. and Grypdonck, M. (2006). Living with early-stage dementia: a review of qualitative studies. Journal of Advanced Nursing, 54, 722-738.
24. Stevens, M. et al. (2011). Assessing the role of increasing choice in English social care services. Journal of Social Policy, 40, 257-274.
25. Thein, N. W., D'Souza, G. and Sheehan, B. (2011). Expectations and experience of moving to a care home: perceptions of older people with dementia. Dementia, 10, 17-18.
26. Todd, K. Z., Nerlich, B., McKeown, S. and Clarke, D. (eds. ) (2004). Mixing Methods in Psychology: The Integration of Qualitative and Quantitative Methods in Theory and Practice. Hove, UK: Psychology Press.
27. Tyrrell, J., Genin, N. and Myslinski, M. (2006). Freedom of choice and decision-making in health and social care: views of older patients with early-stage dementia and their carers. Dementia: The International Journal of Social Research and Practice, 5, 479-502.
28. Wenger, C. (1997). Social networks and the prediction of elderly people at risk. Aging and Mental Health, 1, 311-320.
29. Wenger, C. and Tucker, I. (2002). Using network variation in practice: identification of support network type. Health and Social Care in the Community, 10, 28-35.
30. Werezak, L. and Stewart, N. (2002). Learning to live with early dementia. Canadian Journal of Nursing Research, 34, 67-85.
31. Williams, V., Boyle, G., Jepson, M., Swift, P., Williamson, T. and Heslop, P. (2012). Making Best Interests Decisions: People and Processes. Bristol, UK: Norah Fry Centre. Available at: http://www. mentalhealth. org. uk/ content/assets/PDF/publications/best-interests-report- FINAL1. pdf?view=Standard; last accessed 6 February 2013.