Hostname: page-component-78c5997874-dh8gc Total loading time: 0 Render date: 2024-11-16T17:05:22.388Z Has data issue: false hasContentIssue false
  • English
  • Français

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

Published online by Cambridge University Press:  19 March 2013

Kritika Samsi  and
Jill Manthorpe
Kritika Samsi*
Affiliation:
Social Care Workforce Research Unit, King's College London, Strand, London WC2R 2LS, UK
Jill Manthorpe
Affiliation:
Social Care Workforce Research Unit, King's College London, Strand, London WC2R 2LS, UK
*
Correspondence should be addressed to: Kritika Samsi, Social Care Workforce Research Unit, King's College London, Strand, London WC2R 2LS, UK. Phone: +00 44-20-7848-1665; Fax: +00 44-20-7848-5056. Email: [email protected].
Get access Rights & Permissions [Opens in a new window]

Abstract

Background: Exercising choice and control over decisions is central to quality of life. The Mental Capacity Act 2005 (England and Wales) provides a legal framework to safeguard the rights of people with dementia to make their own decisions for as long as possible. The impact of this on long-term planning has been investigated; everyday decision-making in people's own homes remains unexplored.

Methods: Using a phenomenological approach, we interviewed 12 dyads (one person with dementia + one carer) four times over one year to ascertain experience of decision-making, how decisions were negotiated, and how dynamics changed. Qualitative interviews were conducted in people's own homes, and thematic analysis was applied to transcripts.

Results: Respecting autonomy, decision-specificity and best interests underlay most everyday decisions in this sample. Over time, dyads transitioned from supported decision-making, where person with dementia and carer made decisions together, to substituted decision-making, where carers took over much decision-making. Points along this continuum represented carers’ active involvement in retaining their relative's engagement through providing cues, reducing options, using retrospective information, and using the best interests principle. Long-term spouse carers seemed most equipped to make substitute decisions for their spouses; adult children and friend carers struggled with this.

Conclusions: Carers may gradually take on decision-making for people with dementia. This can bring with it added stresses, such as determining their relative's decision-making capacity and weighing up what is in their best interests. Practitioners and support services should provide timely advice to carers and people with dementia around everyday decision-making, and be mindful how abilities may change.

Keywords

decision-makingdementiacarersautonomy
Type
Research Article
Information
International Psychogeriatrics , Volume 25 , Issue 6 , June 2013 , pp. 949 - 961
Copyright
Copyright © International Psychogeriatric Association 2013

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Adler, G. (2010). Driving decision-making in older adults with dementia. Dementia, 9, 45–60.CrossRefGoogle Scholar
Askham, J. (1994). Marriage relationships of older people. Reviews in Clinical Gerontology, 4, 261–268.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
Bond, J., Corner, L., Lilley, A. and Ellwood, C. (2002). Medicalization of insight and caregivers’ responses to risk in dementia. Dementia, 1, 313–328.CrossRefGoogle Scholar
Braun, V. and Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
Clare, L. (2003). Managing threats to self: awareness in early stage Alzheimer's disease. Social Science and Medicine, 5, 1017–1029.CrossRefGoogle Scholar
Edge, J. (2001). Who's in Control? Decision-Making by People with Learning Difficulties who Have High Support Needs. York, UK: Joseph Rowntree Foundation.Google Scholar
Holm, S. (2001). Autonomy, authenticity, or best interest: everyday decision-making and persons with dementia. Medicine, Health Care and Philosophy, 4, 153–159.CrossRefGoogle ScholarPubMed
Kane, R. A.et al. (2003). Quality of life measures for nursing home residents. Journals of Gerontology: Medical Science, 58A, 240–248.Google Scholar
Livingston, G.et al. (2010). Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK. BMJ, 341, c4184.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
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-the-vulnerable/mca/mca-code-practice-0509.pdf; last accessed 6 February 2013).Google Scholar
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.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle Scholar
Ready, R. E. and Ott, B. R. (2003). Quality of life measures for dementia. Health and Quality of Life Outcomes, 1, 1–9.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
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.Google Scholar
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.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
Stevens, M.et al. (2011). Assessing the role of increasing choice in English social care services. Journal of Social Policy, 40, 257–274.CrossRefGoogle Scholar
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.Google Scholar
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.CrossRefGoogle Scholar
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.CrossRefGoogle Scholar
Wenger, C. (1997). Social networks and the prediction of elderly people at risk. Aging and Mental Health, 1, 311–320.CrossRefGoogle Scholar
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.CrossRefGoogle ScholarPubMed
Werezak, L. and Stewart, N. (2002). Learning to live with early dementia. Canadian Journal of Nursing Research, 34, 67–85.Google ScholarPubMed
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.Google Scholar