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Planning for tomorrow whilst living for today: the views of people with dementia and their families on advance care planning

Published online by Cambridge University Press:  20 September 2013

Claire Dickinson ,
Claire Bamford ,
Catherine Exley ,
Charlotte Emmett ,
Julian Hughes  and
Louise Robinson
Claire Dickinson*
Affiliation:
Institute of Health and Society, Newcastle University, Baddiley-Clark Building, Richardson Road, Newcastle-upon-Tyne NE2 4AX, UK
Claire Bamford
Affiliation:
Institute of Health and Society, Newcastle University, Baddiley-Clark Building, Richardson Road, Newcastle-upon-Tyne NE2 4AX, UK
Catherine Exley
Affiliation:
Institute of Health and Society, Newcastle University, Baddiley-Clark Building, Richardson Road, Newcastle-upon-Tyne NE2 4AX, UK
Charlotte Emmett
Affiliation:
Centre for Mental Health Law, School of Law, Northumbria University, City Campus East, Newcastle-upon-Tyne NE1 8ST, UK
Julian Hughes
Affiliation:
Northumbria Healthcare NHS Foundation Trust and Institute for Ageing and Health, Newcastle University, c/o North Tyneside General Hospital, Rake Lane, North Shields NE29 8NH, UK
Louise Robinson
Affiliation:
Institute of Health and Society, Newcastle University, Baddiley-Clark Building, Richardson Road, Newcastle-upon-Tyne NE2 4AX, UK
*
Correspondence should be addressed to: Claire Dickinson, Lecturer in Social Gerontology, Institute of Health and Society, Newcastle University, Baddiley-Clark Building, Richardson Road, Newcastle-upon-Tyne NE2 4AX, United Kingdom. Phone: +44 0191 222 7445; Fax: + 44 (0) 191 222 6043. Email: claire.dickinson@ncl.ac.uk.
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Abstract

Background:

Advance care planning (ACP) is increasingly prominent in many countries; however, the evidence base for its acceptability and effectiveness is limited especially in conditions where cognition is impaired, as in dementia.

Method:

This qualitative study used semi-structured interviews with people with mild to moderate dementia (n = 17) and family carers (n = 29) to investigate their views about planning for their future generally and ACP specifically.

Results:

People with dementia and their families make a number of plans for the future. Most people undertook practical, personal, financial, and legal planning. However participants did not make formal advance care plans with the exception of appointing someone to manage their financial affairs. Five barriers to undertaking ACP were identified: lack of knowledge and awareness, difficulty in finding the right time, a preference for informal plans over written documentation, constraints on choice around future care, and lack of support to make choices about future healthcare.

Conclusions:

Health and social care professionals can build on people's preferences for informal planning by exploring the assumptions underlying them, providing information about the possible illness trajectory and discussing the options of care available. Health and social care professionals also have a role to play in highlighting the aspects of ACP which seem to be most relevant to the wishes and aspirations of people with dementia.

Keywords

advance care planningdementiaqualitative researchageingcarers
Type
Research Article
Information
International Psychogeriatrics , Volume 25 , Issue 12 , December 2013 , pp. 2011 - 2021
Copyright
Copyright © International Psychogeriatric Association 2013 

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References

Ayalon, L., Bachner, Y. G., Dwolatzky, T. and Heinik, J. (2012). Preferences for end-of-life treatment: concordance between older adults with dementia or mild cognitive impairment and their spouses. International Psychogeriatrics, 24 (11), 1798–1804.CrossRefGoogle ScholarPubMed
Banerjee, S.et al. (2007). Improving the quality of care for mild to moderate dementia; an evaluation of the Croydon Memory Service Model. International Journal of Geriatric Psychiatry, 22, 782–788.CrossRefGoogle ScholarPubMed
Berger, J. T. (2010). What about process? Limitations in advance directives, care planning and noncapacitated decision making. The American Journal of Bioethics, 10, 33–34.CrossRefGoogle ScholarPubMed
Boyd, K.et al. (2010). Advance care planning for cancer patients in primary care: a feasibility study. British Journal of General Practice, 60 (581), 449–458.CrossRefGoogle ScholarPubMed
Braun, V. and Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101.CrossRefGoogle Scholar
Carrese, J. A., Mullaney, J. L., Faden, R. R. and Finucane, T. E. (2002). Planning for death but not serious future illness: qualitative study of housebound elderly patients. British Medical Journal, 325, 125.CrossRefGoogle Scholar
Cavalieri, T. A., Latif, W., Ciesielski, J., Ciervo, C. A. J. and Forman, L. J. (2002). How physicians approach advance care planning in patients with mild to moderate Alzheimer's Disease. Journal of the American Osteopathic Association, 102, 541–547.Google ScholarPubMed
Daly, J.et al. (2007). A hierarchy of evidence for assessing qualitative health research. Journal of Clinical Epidemiology, 60, 43–49.CrossRefGoogle ScholarPubMed
Daveson, B. A.et al. (2013). To be involved or not to be involved: a survey of public preferences for self-involvement in decision-making involving mental capacity (competency) within Europe. Palliative Medicine. doi:10.1177/0269216312471883.CrossRefGoogle ScholarPubMed
Dening, K., Jones, L. and Sampson, E. (2011). Advance care planning for people with dementia: a review. International Psychogeriatrics, 23 (10), 1535–1551.CrossRefGoogle ScholarPubMed
Dening, K. H., Jones, L. and Sampson, E. (2012). Preferences for end-of-life care: a nominal group study of people with dementia and their family carers. Palliative Medicine. doi:10.1177/0269216312464094.Google Scholar
Department of Constitutional Affairs (2007). Mental Capacity Act Code of Practice. Available at: www.dca.gov.uk/legal-policy/mental-capacity/mca-cp.pdf.Google Scholar
Folstein, M. F., Folstein, S. E. and McHugh, P. R. (1975). “Mini-mental state”. A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189–198.CrossRefGoogle ScholarPubMed
Gillick, M. R. (2010). Advance care planning: an American view. In Hughes, J. C., Lloyd-Williams, M. and Sachs, G. A. (eds.), Supportive Care for the Person with Dementia (pp. 263–270). Oxford: Oxford University Press.Google Scholar
Godwin, B. and Waters, H. (2009). ‘In solitary confinement’: planning end-of-life well-being with people with advanced dementia, their family and professional carers. Mortality, 14, 265–285.CrossRefGoogle Scholar
Hertogh, C. (2010). Advance care planning and palliative care in dementia: a view from the Netherlands. In Hughes, J. C., Lloyd-Williams, M. and Sachs, G. A. (eds.), Supportive Care for the Person with Dementia (pp. 271–280). Oxford: Oxford University Press.Google Scholar
Hill, K., Kellard, K., Middleton, S., Cox, L. and Pound, E. (2007). Understanding Resources in Later Life:Views and Experiences of Older People. York: Joseph Rowntree Foundation.Google Scholar
Hirschman, K. B., Xie, S. X., Feudtner, C. and Karlawish, H. T. (2004). How does an Alzheimer's disease patient's role in medical decision making change over time?. Journal of Geriatric Psychiatry and Neurology, 17, 55–60.CrossRefGoogle ScholarPubMed
Houttekier, D.et al. (2010). Place of death of older persons with dementia. A study in five European countries. Journal of American Geriatric Society, 58, 751–756.CrossRefGoogle ScholarPubMed
Manthorpe, J.et al. (2011). The Transition from Cognitive Impairment to Dementia: Older People's Experiences. Southampton. Final Report. NIHR Service Delivery and Organisation programme.Google Scholar
National Institute for Clinical Excellence (2010). End of Life Care for People with Dementia: Commisioning Guide. Implementing NICE Guidance. Available at: http://www.nice.org.uk/usingguidance/commissioningguides/eolcforpeoplewithdementia/eolcforpeoplewithdementia.jsp (Accessed: June 2010).Google Scholar
National Institute for Clinical Excellence/Social Care Institute of Excellence (2006). Dementia: Guidance on Health and Social Care. Available at: http://guidance.nice.org.uk/CG42 (Accessed: November 2006).Google Scholar
NHS National End of Life Care Programme (2011). Capacity, Care Planning and Advance Care Planning in Life Limiting Illness: A Guide for Health and Social Care Staff. Available at: www.endoflifecareforadults.nhs.uk (Accessed: March 2013).Google Scholar
Nuffield Council on Bioethics (2009). Dementia: Ethical Issues. Available at: http://www.nuffieldbioethics.org (Accessed: March 2013).Google Scholar
Patient Self Determination Act: 1990. Available at: http://www.americanbar.org/groups/public_education/resources/law_issues_for_consumers/patient_self_self_determination_act.html (Accessed: 24 April 2012).Google Scholar
Robinson, A. L.et al. (2012). A systematic review of the effectiveness of advance care planning interventions for people with cognitive impairment and dementia. Age and Ageing, 41, 263–269. doi:10.1093/ageing/afr148.CrossRefGoogle ScholarPubMed
Sampson, E. and Robinson, A. L. (2009). Editorial: End of life care in dementia: building bridges for effective multidisciplinary care. Dementia, 8, 331–334.CrossRefGoogle Scholar
Sampson, E. L.et al. (2011). Palliative assessment and advance care planning in severe dementia: an exploratory randomized controlled trial of a complex intervention. Palliative Medicine, 25, 197–209.CrossRefGoogle ScholarPubMed
Samsi, K. and Manthorpe, J. (2011). “I live for today”: a qualitative study investigating older people's attitudes to advance planning. Health and Social Care 19, 52–59.CrossRefGoogle ScholarPubMed
Seymour, J., Almack, K. and Kennedy, S. (2010). Implementing advance care planning: a qualitative study of community nurses’ views and experiences. BMC Palliative Care, 9, 1–9.CrossRefGoogle ScholarPubMed
Seymour, J., Gott, M., Bellamy, G., Ahmedzai, S. H. and Clark, D. (2004). Planning for the end of life: the views of older people about advance care statements. Social Science and Medicine, 59, 57–68.CrossRefGoogle ScholarPubMed
Shega, J. and Tozer, C. (2009). Improving the care of people with dementia at the end of life: the role of hospice and the US experience. Dementia 8, 377–389.CrossRefGoogle Scholar
Teno, J. (2004). Advance Directives: time to move on. Annals of Internal Medicine, 141, 159–160.CrossRefGoogle ScholarPubMed