Hostname: page-component-745bb68f8f-kw2vx Total loading time: 0 Render date: 2025-01-11T18:54:45.789Z Has data issue: false hasContentIssue false
  • English
  • Français

Advance care planning for people with dementia: a review

Published online by Cambridge University Press:  26 August 2011

Karen Harrison Dening ,
Louise Jones  and
Elizabeth L. Sampson
Karen Harrison Dening*
Affiliation:
Dementia UK, London, UK Marie Curie Palliative Care Research Unit, Research Department of Mental Health Sciences, University College Medical School, London, UK
Louise Jones
Affiliation:
Marie Curie Palliative Care Research Unit, Research Department of Mental Health Sciences, University College Medical School, London, UK
Elizabeth L. Sampson
Affiliation:
Marie Curie Palliative Care Research Unit, Research Department of Mental Health Sciences, University College Medical School, London, UK Barnet Enfield and Haringey Mental Health Trust, London, UK
*
Correspondence should be addressed to: Karen Harrison Dening, Practice Development Lead for Admiral Nursing, Dementia UK, 6 Camden High Street, London N1 0JH, UK. Phone: +44 (0)20 7874 7210; Fax: +44 (0)20 7874 7219. Email: [email protected].
Get access

Abstract

Background: Few people with dementia have made advance plans for their health care. Advance care planning (ACP) is a process of discussion between an individual and their care providers that takes account of wishes and preferences for future care. We aimed to examine the facilitators and inhibitors to ACP in people with dementia. We also aimed to identify key themes in the literature and critically review the methodologies used.

Methods: We systematically searched the English language literature including PubMed, CINAHL, AMED, PsychINFO, EMBASE and BNI. We included empirical studies which reported the characteristics of the patient population, the type of advance care planning used and the study setting, and which involved people with dementia, family members or professional carers.

Results: We identified 17 studies (11 quantitative methods, one qualitative and five mixed methods). We found one ACP intervention which changed outcomes for people with dementia. Key themes were identified: there is a point at which cognition decreases critically so that an advanced care plan can no longer be made; factors present in family carers and professionals can influence decision-making and the ACP process; ACPs are affected by preferences for life sustaining treatments; ACP in dementia may differ from other illness groups; and there is a need for education relating to ACP.

Conclusion: The current evidence base for ACP in dementia is limited. Since UK government policy recommends that all people should engage in ACP, more evidence is needed to understand the feasibility and acceptability of advanced care plans for people with dementia.

Keywords

advance care planningadvance directivesend-of-life carepalliative caredementiareview
Type
Review Article
Information
International Psychogeriatrics , Volume 23 , Issue 10 , December 2011 , pp. 1535 - 1551
Copyright
Copyright © International Psychogeriatric Association 2011

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

Alano, G. J., et al. (2010). Factors influencing older adults to complete advance directives. Palliative and Supportive Care, 8, 267–275.CrossRefGoogle ScholarPubMed
Alzheimer, Europe (2006). Alzheimer Europe Report: The Use of Advance Directives by People with Dementia. Luxembourg: Alzheimer Europe.Google Scholar
American Psychiatric Association (1994). Diagnostic and Statistical Manual of Mental Disorders. Washington, DC: American Psychiatric Association.Google Scholar
Banerjee, S., Willis, R., Matthews, D., Contell, F., Chan, J. and Murray, J. (2007). Improving the quality of care for mild to moderate dementia: an evaluation of the Crodon Memory Service Model. International Journal of Geriatric Psychiatry, 22, 78–788.CrossRefGoogle ScholarPubMed
Boyle, M. H. (1998). Guidelines for evaluating prevalence studies. Evidence Based Mental Health, 1, 37–39.CrossRefGoogle Scholar
Caplan, G. A., Meller, A., Squires, B., Chan, S. and Willett, W. (2006). Advance care planning and hospital in the nursing home. Age and Ageing, 35, 581–586.CrossRefGoogle ScholarPubMed
Cavalieri, T. A., Latif, W., Ciesielski, J., CiervoC. A., Jr. C. A., Jr. 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
Centre for Reviews and Dissemination (2009). Systematic Reviews: CRD's Guidance on Delivering Reviews in Healthcare. York: Centre for Reviews and Dissemination, University of York.Google Scholar
Coren, E. and Fisher, M. (2006). Social Care Institute for Excellence: The Conduct of Systematic Research Reviews for SCIE Knowledge Reviews. London: SCIE.Google Scholar
Davies, S. and Nolan, M. (2004). “Making the move”: relatives’ experiences of the transition to a care home. Health and Social Care in the Community, 12, 517–526.CrossRefGoogle ScholarPubMed
Department of Constitutional Affairs (2005). Mental Capacity Act. London: HM Government.Google Scholar
Department of Health (2008). End-of-Life Care Strategy. London: Department of Health.Google Scholar
Duke, G. and Thompson, S. (2007). Knowledge, attitudes and practices of nursing personnel regarding advance directives. International Journal of Palliative Nursing, 13, 109–117.CrossRefGoogle ScholarPubMed
Fazel, S., Hope, T. and Jacoby, R. (1999). Assessment of competence to complete advance directives: validation of a patient centred approach. BMJ, 318, 493–498.CrossRefGoogle ScholarPubMed
Fazel, S., Hope, T. and Jacoby, R. (2000). Effect of cognitive impairment and premorbid intelligence on treatment preferences for life-sustaining medical therapy. American Journal of Psychiatry, 157, 1009–1011.CrossRefGoogle ScholarPubMed
Finucane, T. E., Bearner, B. A., Roca, R. P. and Kawas, C. H. (1991). Establishing advance medical directives with demented patients: a pilot study. Journal of Clinical Ethics, 4, 51–54.CrossRefGoogle 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
Forbes, S., Bern-Klug, M. and Gessert, C. (2000). End-of-life decision making for nursing home residents with dementia. Journal of Nursing Scholarship, 32, 251–259.CrossRefGoogle ScholarPubMed
Gregory, R., Roked, F., Jones, L. and Patel, A. (2007). Is the degree of cognitive impairment in patients with Alzheimer's disease related to their capacity to appoint an enduring power of attorney? Age and Ageing, 36, 527–532.CrossRefGoogle ScholarPubMed
Hanrahan, P. and Luchins, D. J. (1995). Access to hospice programs in end-stage dementia: a national survey of hospice programs. Journal of the American Geriatrics Society, 43, 56–59.CrossRefGoogle ScholarPubMed
Haydar, Z. R., Lowe, A. J., Kahveci, K. L., Weatherford, W. and Finucane, T. (2004). Differences in end-of-life preferences between congestive heart failure and dementia in a medical house calls program. Journal of the American Geriatrics Society, 52, 736–741.CrossRefGoogle Scholar
Henry, C. and Seymour, J. (2007). Advance Care Planning: A Guide for Health and Social Care Staff. London: Department of Health.Google Scholar
Hirschman, K. B., Xie, S. X., Feudtner, C. and Karlawish, J. H. T. (2004). How does Alzheimer's disease patient's role in medical decision making change over time? Journal of Geriatric Psychiatry and Neurology, 17, 55–60.CrossRefGoogle ScholarPubMed
Hirschman, K. B., Kapo, J. M. and Karlawish, J. H. T. (2006). Why doesn't a family member of a person with advanced dementia use a substituted judgment when making a decision for that person. American Journal of Geriatric Psychiatry, 14, 659–667.CrossRefGoogle ScholarPubMed
Hirschman, K. B., Kapo, J. M. and Karlawish, J. H. T. (2008). Identifying the factors that facilitate or hinder advance planning by persons with dementia. Alzheimer's Disease and Associated Disorders, 22, 293–298.CrossRefGoogle ScholarPubMed
Hoe, J., Katona, C., Orrell, M. and Livingston, G. (2007). Quality of life in dementia: care recipient and caregiver perceptions of quality of life in dementia: the LASER-AD study. International Journal of Geriatric Psychiatry, 22, 1031–1036.CrossRefGoogle ScholarPubMed
Horne, G., Seymour, J. and Shepherd, K. (2007). Advance care planning for patients with inoperable lung cancer. International Journal of Palliative Nursing, 12, 172–178.CrossRefGoogle Scholar
Karel, M. J., Moye, J., Bank, A. and Azar, A. R. (2007). Three methods of assessing values for advanced care planning: comparing persons with and without dementia. Journal of Aging and& Health, 19, 123–152.CrossRefGoogle ScholarPubMed
Kirchhoff, K. T., Hammes, B. J., Kehl, K. A., Briggs, L. A. and Brown, R. L. (2010). Effect of a disease-specific planning intervention on surrogate understanding of patient goals for future medical treatment. Journal of the American Geriatrics Society, 58, 1233–1240.CrossRefGoogle ScholarPubMed
Knapp, M. and Prince, M. (2007). Dementia UK: The Full Report. London: Alzheimer's Society.Google Scholar
Lacey, D. (2005). Nursing home social worker skills and end-of-life planning. Social Work and Health Care, 40, 19–40.CrossRefGoogle ScholarPubMed
Levi, B. H., Dellasega, C., Whitehead, M. and Green, M. J. (2010). What influences individuals to engage in advance care planning? American Journal of Hospice and Palliative Care, 27, 306–312.CrossRefGoogle ScholarPubMed
Lingler, J. H. et al. (2008). Frequency and correlates of advance planning among cognitively impaired older adults. American Journal of Geriatric Psychiatry, 16, 643–649.CrossRefGoogle ScholarPubMed
Livingston, G. et al. (2010). Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK. BMJ, 18, 341.Google Scholar
Mezey, M., Teresi, J., Ramsey, G., Mitty, E. and Bobrowitz, T. (2000). Decision-making capacity to execute a health care proxy: development and testing of guidelines. Journal of the American Geriatrics Society, 48, 179–188.CrossRefGoogle ScholarPubMed
Molloy, W. (2005). Let Me Decide. Ottawa: Penguin.Google Scholar
Neale, R., Brayne, C. and Johnson, A. L. (2001). Cognition and survival: an exploration in a large multicentre study of the population aged 65 years and over. International Journal of Epidemiology, 30, 1383–1388.CrossRefGoogle Scholar
Rurup, M. L., Onwuteaka-Philipsen, B. D., Roeline, H., Pasman, W., Ribbe, M. W. and van der Wal, G. (2006). Attitudes of physicians, nurses and relatives towards end-of-life decisions concerning nursing home patients with dementia. Patient Education and Counseling, 61, 372–380.CrossRefGoogle ScholarPubMed
Ryan, A. A. and Scullion, H. F. (2000). Nursing home placement: an exploration of the experiences of family carers. Journal of Advanced Nursing, 32, 1187–1195.CrossRefGoogle ScholarPubMed
Sampson, E. L., Gould, L., Lee, D. and Blanchard, M. R. (2006). Differences in care received by patients with and without dementia who died during acute hospital admission: a retrospective case note study. Age and Ageing, 35, 187–189.CrossRefGoogle ScholarPubMed
Schmid, B., Allen, R. S., Haley, P. P. and Decoster, J. (2009). Family matters: dyadic agreement in end-of-life medical decision making. Gerontologist, 50, 226–237.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.CrossRefGoogle ScholarPubMed
Seymour, J., Almack, K. and Kennedy, S. (2010). Implementing Advance Care Planning: a qualitative study of community nurses’ views and experiences. BMC, 8, 4.Google Scholar
Teno, J. M. (2010). Advance directives for nursing home residents: achieving compassionate, competent, cost-effective care. JAMA, 283, 1481–1482.CrossRefGoogle Scholar
Triplett, P. et al. (2008). Content of advance directives for individuals with advanced dementia. Journal of Aging & Health, 20, 583–597.CrossRefGoogle ScholarPubMed
Congress, US (1991). Patient Self Determination Act. Washington, DC.Google Scholar
van der Heide, A. et al. (2003). End-of-life decision making in six European countries: descriptive study. Lancet, 362, 345–350.CrossRefGoogle ScholarPubMed
van der Steen, J. T. (2010). Dying with dementia: what we know after more than a decade of research. Journal of Alzheimer's Disease, 22, 37–55.CrossRefGoogle ScholarPubMed
van Wijman, M. P., Rurup, M. L., Pasman, H. R., Kaspers, P. J. and Onwuteaka-Philipsen, B. D. (2010). Advance directives in the Netherlands: an empirical contribution to the exploration of a cross-cultural perspective on advance directives. Bioethics, 24, 118–126.CrossRefGoogle Scholar
Wimo, A. and Prince, M. (2010). World Alzheimer Report 2010: The Global Impact of Dementia. London: Alzheimer's Disease International.Google Scholar