Hostname: page-component-669899f699-swprf Total loading time: 0 Render date: 2025-04-25T09:52:14.511Z Has data issue: false hasContentIssue false
  • English
  • Français

A systematic review of barriers and facilitators to and interventions for proxy decision-making by family carers of people with dementia

Published online by Cambridge University Press:  14 April 2015

Kathryn Lord ,
Gill Livingston  and
Claudia Cooper
Kathryn Lord*
Affiliation:
Division of Psychiatry, University College London (UCL), 63-73 Riding House Street, W1W 7EJ London, UK
Gill Livingston
Affiliation:
Division of Psychiatry, University College London (UCL), 63-73 Riding House Street, W1W 7EJ London, UK
Claudia Cooper
Affiliation:
Division of Psychiatry, University College London (UCL), 63-73 Riding House Street, W1W 7EJ London, UK
*
Correspondence should be addressed to: Kathryn Lord, Division of Psychiatry, University College London (UCL), 63-73 Riding House Street, W1W 7EJ London, UK. Phone: +0207 679 9716; Fax: +0207 679 9426. Email: [email protected].
Get access

Abstract

Background:

Relatives of people with dementia report that proxy decision-making is difficult and distressing. We systematically reviewed the literature about barriers and facilitators to family carers of people with dementia making proxy decisions, and interventions used to facilitate their decision-making.

Methods:

We searched electronic databases and references of included papers up to February 2014. Two authors independently evaluated study quality using a checklist.

Results:

We included the 30/104 papers from our search which fitted predetermined criteria and prioritized higher quality papers. Family carers report that proxy decision-making is challenging and can be distressing, especially when decisions are made against the wishes of the care recipient and support from healthcare professionals is lacking. Decision-specific manualized aids have been developed, and while results for those supporting decisions about respite and percutaneous endoscopic gastrostomy (PEG) feeding have shown promising results in pilot trials, no intervention has yet been shown to significantly reduce decisional conflict or carer burden, or increase knowledge in randomized controlled trials; a decision aid for advance care planning increased decisional conflict.

Conclusions:

We recommend development and testing of decision aids targeting the decisions carers report finding most distressing, including those around where people should live, accessing services, and end of life treatments. Being provided with information to make decisions which have not previously been considered may increase feelings of conflict, suggesting these aids should be carefully targeted.

Keywords

proxy decision-makingcarersdementia
Type
Review Article
Information
International Psychogeriatrics , Volume 27 , Issue 8 , August 2015 , pp. 1301 - 1312
Copyright
Copyright © International Psychogeriatric Association 2015 

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.)

Article purchase

Temporarily unavailable

References

Ablitt, A., Jones, G. V. and Muers, J. (2009). Living with dementia: a systematic review of the influence of relationship factors. Aging & Mental Health, 13, 497–511.CrossRefGoogle ScholarPubMed
The Department of Health (2000). The Adults with Incapacity (Scotland) Act 2000. Available at: http://www.legislation.gov.uk/asp/2000/4/contents.Google Scholar
Alzheimer's Society (2012). Dementia 2012: A National Challenge. Available at: http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=1389.Google Scholar
Boyle, M. H. (1998). Guidelines for evaluating prevalence studies. Evidence Based Mental Health, 1, 37–39.CrossRefGoogle Scholar
Butcher, H. K., Holkup, P. A., Park, M. and Maas, M. (2001). Thematic analysis of the experience of making a decision to place a family member with Alzheimer's disease in a special care unit. Research in Nursing & Health, 24, 470–480.CrossRefGoogle Scholar
Cairns, M. (2012). In sickness and in health: an exploration of some of the unconscious processes involved in the decision by family caregivers to place a family member with dementia in residential care. Psychoanalytic Psychotherapy, 26, 34–47.CrossRefGoogle Scholar
Caron, C. D., Ducharme, F. and Griffith, J. (2006). Deciding on institutionalisation for a relative with dementia: the most difficult decision for caregivers. Canadian Journal on Aging, 25, 193–205.CrossRefGoogle ScholarPubMed
Chang, Y. P. and Schneider, J. K. (2010). Decision-making process of nursing home placement among Chinese family caregivers. Perspectives in Psychiatric Care, 46, 108–118.CrossRefGoogle ScholarPubMed
Chang, Y. P., Schneider, J. K. and Sessanna, L. (2011). Decisional conflict among Chinese family caregivers regarding nursing home placement of older adults with dementia. Journal of Aging Studies, 25, 436–444.CrossRefGoogle Scholar
Chrisp, T. A., Tabberer, S. and Thomas, B. D. (2013). Bounded autonomy in deciding to seek medical help: carer role, the sick role and the case of dementia. Journal of Health Psychology, 18, 272–281.CrossRefGoogle ScholarPubMed
Chrisp, T. A., Tabberer, S., Thomas, B. D. and Goddard, W. A. (2012). Dementia early diagnosis: triggers, supports and constraints affecting the decision to engage with the health care system. Aging & Mental Health, 16, 559–565.CrossRefGoogle ScholarPubMed
Coetzee, R. H., Leask, S. J. and Jones, R. G. (2003). The attitudes of carers and old age psychiatrists towards the treatment of potentially fatal events in end-stage dementia. International Journal of Geriatric Psychiatry, 18, 169–173.CrossRefGoogle ScholarPubMed
Cohen, C. A., Gold, D. P., Shulman, K. I., Wortley, J. T., McDonald, G. and Wargon, M. (1993). Factors determining the decision to institutionalize dementing individuals: a prospective study. Gerontologist, 33, 714–720.CrossRefGoogle ScholarPubMed
Cooper, C., Ketley, D. and Livingston, G. (2014). Systematic review and meta-analysis to estimate potential recruitment to dementia intervention studies. International Journal of Geriatric Psychiatry, 29, 515–525.CrossRefGoogle ScholarPubMed
Ducharme, F., Couture, M. and Lamontagne, J. (2012). Decision-making process of family caregivers regarding placement of a cognitively impaired elderly relative. Home Health Care Services Quarterly, 31, 197–218.CrossRefGoogle ScholarPubMed
Elliott, B. A., Gessert, C. E. and Peden-McAlpine, C. (2009). Family decision-making in advanced dementia: narrative and ethics. Scandinavian Journal of Caring Sciences, 23, 251–258.CrossRefGoogle ScholarPubMed
Heinrich, M., Neufeld, A. and Harrison, M. J. (2003). Seeking support: caregiver strategies for interacting with health personnel. Canadian Journal of Nursing Research, 35, 38–56.Google ScholarPubMed
Hirschman, K. B., Joyce, C. M., James, B. D., Xie, S. X., Casarett, D. J. and Karlawish, J. H. (2005). Would caregivers of Alzheimer disease patients involve their relative in a decision to use an AD-slowing medication? The American Journal of Geriatric Psychiatry, 13, 1014–1021.CrossRefGoogle Scholar
Karlawish, J. H., Casarett, D., Propert, K. J., James, B. D. and Clark, C. M. (2002). Relationship between Alzheimer's disease severity and patient participation in decisions about their medical care. Journal of Geriatric Psychiatry and Neurology, 15, 68–72.CrossRefGoogle ScholarPubMed
Kwon, S. H. and Tae, Y. S. (2012). Nursing home placement: the process of decision making and adaptation among adult children caregivers of demented parents in Korea. Asian Nursing Research, 6, 143–151.CrossRefGoogle ScholarPubMed
Landau, R., Auslander, G. K., Werner, S., Shoval, N. and Heinik, J. (2011). Who should make the decision on the use of GPS for people with dementia? Aging & Mental Health, 15, 78–84.CrossRefGoogle ScholarPubMed
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
The Department of Health (2005). The Mental Capacity Act 2005. Available at: http://www.legislation.gov.uk/ukpga/2005/9/contentsGoogle Scholar
Mitchell, S. L., Tetroe, J. and O’Connor, A. M. (2001). A decision aid for long-term tube feeding in cognitively impaired older persons. Journal of the American Geriatrics Society, 49, 313–316.CrossRefGoogle ScholarPubMed
Moise, P., Schwarzinger, M. and Um, M. (2004). Dementia Care in 9 OECD Countries: A Comparative Analysis. Paris: OECD.Google Scholar
Mukadam, N., Cooper, C. and Livingston, G. (2011). A systematic review of ethnicity and pathways to care in dementia. International Journal of Geriatric Psychiatry, 26, 12–20.CrossRefGoogle ScholarPubMed
Potkins, D., Bradley, S., Shrimanker, J., O’Brien, J., Swann, A. and Ballard, C. (2000). End of life treatment decisions in people with dementia: carers’ views and the factors which influence them. International Journal of Geriatric Psychiatry, 15, 1005–1008.3.0.CO;2-0>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. (2013). Everyday decision-making in dementia: findings from a longitudinal interview study of people with dementia and family carers. International Psychogeriatrics, 25, 949–961.CrossRefGoogle ScholarPubMed
Shalowitz, D. I., Garrett-Mayer, E. and Wendler, D. (2006). The accuracy of surrogate decision makers: a systematic review. Archives of Internal Medicine, 166, 493–497.CrossRefGoogle ScholarPubMed
Smebye, K. L., Kirkevold, M. and Engedal, K. (2012). How do persons with dementia participate in decision making related to health and daily care? A multi-case study. BMC. Health Services Research, 12, 241.CrossRefGoogle Scholar
Sommerlad, A., Manela, M, Cooper, C, et al. (2014). START (STrAtegies for RelaTives) coping strategy for family carers of adults with dementia: qualitative study of participants’ views about the intervention. BMJ Open, 4, e005273. doi:10.1136/bmjopen-2014-005273.CrossRefGoogle ScholarPubMed
St-Amant, O.et al. (2012). Making care decisions in home-based dementia care: why context matters. Canadian Journal on Aging, 31, 423–434.CrossRefGoogle ScholarPubMed
Stirling, C.et al. (2012). Decision aids for respite service choices by carers of people with dementia: development and pilot RCT. BMC Medical Informatics and Decision Making, 12, 21.CrossRefGoogle ScholarPubMed
Sugarman, J., Cain, C., Wallace, R. and Welsh-Bohmer, K. A. (2001). How proxies make decisions about research for patients with Alzheimer's disease. Journal of the American Geriatrics Society, 49, 1110–1119.CrossRefGoogle ScholarPubMed
Torke, A. M., Alexander, G. G. and Lantos, J. (2008). Substituted judgment: the limitations of autonomy in surrogate decision making. Journal of General Internal Medicine, 23, 1514–1517.CrossRefGoogle ScholarPubMed
Torke, A. M., Schwartz, P. H., Holtz, L. R., Montz, K. and Sachs, G. A. (2013). Caregiver perspectives on cancer screening for persons with dementia: “why put them through it?.” Journal of the American Geriatrics Society, 61, 1309–1314.CrossRefGoogle Scholar
Tyrell, 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, 5, 479–502.CrossRefGoogle Scholar
Wackerbarth, S. (1999). Modelling a dynamic decision process: supporting the decisions of caregivers of family members with dementia. Qualitative Health Research, 9, 294.CrossRefGoogle Scholar
Walker, E. and Jane Dewar, B. (2001). How do we facilitate carers involvement in decision making? Journal of Advanced Nursing, 34, 329–337.CrossRefGoogle ScholarPubMed
Wolfs, C. A.et al. (2012). Rational decision-making about treatment and care in dementia: a contradiction in terms? Patient Education and Counseling, 87, 43–48.CrossRefGoogle ScholarPubMed
Wortmann, M. (2012). Dementia: a global health priority—highlights from an ADI and world health organization report. Alzheimer's Research & Therapy, 4, 40.CrossRefGoogle ScholarPubMed