Hostname: page-component-cd9895bd7-hc48f Total loading time: 0 Render date: 2024-12-21T08:16:52.442Z Has data issue: false hasContentIssue false
  • English
  • Français

Decision aids to support decision-making in dementia care: a systematic review

Published online by Cambridge University Press:  26 July 2019

Nathan Davies ,
Brooke Schiowitz ,
Greta Rait ,
Victoria Vickerstaff  and
Elizabeth L. Sampson
Nathan Davies*
Affiliation:
Centre for Ageing Population Studies, Research Department of Primary Care and Population Health, University College London, London, UK Centre for Dementia Palliative Care Research, Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK
Brooke Schiowitz
Affiliation:
Centre for Ageing Population Studies, Research Department of Primary Care and Population Health, University College London, London, UK
Greta Rait
Affiliation:
Priment Clinical Trials Unit, Research Department of Primary Care and Population Health, University College London, London, UK
Victoria Vickerstaff
Affiliation:
Centre for Dementia Palliative Care Research, Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK
Elizabeth L. Sampson
Affiliation:
Centre for Dementia Palliative Care Research, Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK Barnet Enfield and Haringey Mental Health Trust Liaison Team, North Middlesex University Hospital, Sterling Way, London, UK
*
Correspondence should be addressed to: Nathan Davies, Centre for Ageing Population Studies, Research Department of Primary Care and Population Health, University College London, Rowland Hill Street, London, NW3 2PF, UK; Centre for Dementia Palliative Care Research, Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, Tottenham Court Road, London, W1T 7NF, UK. Tel: +44(0)20 3108 6616; Fax: ++44(0)20 7472 6871. Email: [email protected].
Get access

Abstract

Objectives:

We aimed to critically evaluate decision aids developed for practitioners and caregivers when providing care for someone with dementia or for use by people with dementia themselves. Decision aids may be videos, booklets, or web-based tools that explicitly state the decision, provide information about the decision, and summarize options along with associated benefits and harms. This helps guide the decision maker through clarifying the values they place on the benefits or harms of the options.

Design:

We conducted a systematic review of peer-reviewed literature in electronic databases (CINAHL, The Cochrane Library, EMBASE, MEDLINE, and PsychINFO) in March 2018. Reference lists were searched for relevant papers and citations tracked. Data were synthesized with meta-analysis and narrative synthesis. Papers were included if they met the following criteria: 1) the focus of the paper was on the evaluation of a decision aid; 2) the decision aid was used in dementia care; and 3) the decision aid was aimed at professionals, people with dementia, or caregivers.

Results:

We identified 3618 studies, and 10 studies were included, covering three topics across six decision aids: 1) support with eating/feeding options, 2) place of care, and 3) goals of care. The mode of delivery and format of the decision aids varied and included paper-based, video-based, and audio-based decision aids. The decision aids were shown to be effective, increasing knowledge and the quality of communication. The meta-analysis demonstrated that decisions are effective in reducing decisional conflict among caregivers (standardized mean difference = −0.50, 95% confidence interval [ − 0.97, − 0.02]).

Conclusion:

Decision aids offer a promising approach for providing support for decision-making in dementia care. People are often faced with more than one decision, and decisions are often interrelated. The decision aids identified in this review focus on single topics. There is a need for decision aids that cover multiple topics in one aid to reflect this complexity and better support caregivers.

Keywords

Alzheimer’s diseasedecision-makingdecision aiddecision support tool
Type
Review Article
Information
International Psychogeriatrics , Volume 31 , Issue 10: Issue Theme: Dementia and the Society , October 2019 , pp. 1403 - 1419
Copyright
© International Psychogeriatric Association 2019 

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

Barker, S., Lynch, M. and Hopkinson, J. (2017). Decision making for people living with dementia by their carers at the end of life: a rapid scoping review. International Journal of Palliative Nursing, 23, 446–456.CrossRefGoogle ScholarPubMed
Bayer, A. (2015). Chapter 52-presentation and clinical management of dementia. In: Woodhouse, H. M. F. R. (Ed.), Brocklehurst’s Textbook of Geriatric Medicine and Gerontology (pp. 392–401). Philadelphia: W. B. Saunders.Google Scholar
Bunn, F., et al. (2018). Supporting shared decision making for older people with multiple health and social care needs: a realist synthesis. BMC Geriatrics, 18, 165.CrossRefGoogle ScholarPubMed
Critical Appraisal Skills Programme (2017a). CASP Qualitative Checklist [online]. Available at http://www.webcitation.org/6xDz3wBsA; http://docs.wixstatic.com/ugd/dded87_25658615020e427da194a325e7773d42.pdf; accessed 10 July 2019.Google Scholar
Critical Appraisal Skills Programme (2017b). CASP Randomised Controlled Trial Checklist [Online]. Available at http://www.webcitation.org/6xDz89ZeG; http://docs.wixstatic.com/ugd/dded87_4239299b39f647ca9961f30510f52920.pdf; accessed 10 July 2019.Google Scholar
Davies, N. (2015). Talking with family carers about end-of-life care for people with dementia. European Journal of Palliative Care, 22, 6–8.Google Scholar
Davies, N. and Iliffe, S. (2016). End of life care − why those with dementia have different needs. BMJ, 353, i2171.CrossRefGoogle ScholarPubMed
Davies, N., Maio, L., Rait, G. and Iliffe, S. (2014). Quality end-of-life care for dementia: what have family carers told us so far? A narrative synthesis. Palliative Medicine, 28, 919–930.CrossRefGoogle Scholar
Davies, N., et al. (2016). A co-design process developing heuristics for practitioners providing end of life care for people with dementia. BMC Palliative Care, 15, 68.CrossRefGoogle ScholarPubMed
Davies, N., et al. (2018). Guiding practitioners through end of life care for people with dementia: The use of heuristics. PLOS ONE, 13, e0206422.CrossRefGoogle ScholarPubMed
Department of Health (2008). End of Life Care Strategy: Promoting High Quality Care for all Adults at the End of Life. London: Department of Health.Google Scholar
Einterz, S. F., Gilliam, R., Chang Lin, F., Mcbride, J. M. and Hanson, L. C. (2014). Development and testing of a decision aid on goals of care for advanced dementia. Journal of the American Medical Directors Association, 15, 251–255.CrossRefGoogle ScholarPubMed
Elwyn, G., et al. (2006). Developing a quality criteria framework for patient decision aids: online international Delphi consensus process. BMJ, 333, 417.CrossRefGoogle ScholarPubMed
Emanuel, E. J. and Emanuel, L. L. (1992). Proxy decision making for incompetent patients: an ethical and empirical analysis. JAMA, 267, 2067–2071.CrossRefGoogle ScholarPubMed
Ersek, M., et al. (2014). Provider staffing effect on a decision aid intervention. Clinical Nursing Research, 23, 36–53.CrossRefGoogle ScholarPubMed
Hanson, L. C., et al. (2011). Improving decision-making for feeding options in advanced dementia: a randomized, controlled trial. Journal of the American Geriatrics Society, 59, 2009–2016.CrossRefGoogle ScholarPubMed
Hanson, L. C., et al. (2017). Effect of the goals of care intervention for advanced dementia: a randomized clinical trial. JAMA Internal Medicine, 177, 24–31.CrossRefGoogle ScholarPubMed
Hopwood, J., et al. (2018). Internet-based interventions aimed at supporting family caregivers of people with dementia: systematic review. Journal of Medical Internet Research, 20, e216.CrossRefGoogle ScholarPubMed
Lamahewa, K., et al. (2018). A qualitative study exploring the difficulties influencing decision making at the end of life for people with dementia. Health Expectations, 21, 118–127.CrossRefGoogle ScholarPubMed
Lord, K., Livingston, G. and Cooper, C. (2017). A feasibility randomised controlled trial of the Decide intervention: dementia carers making informed decisions. BJPsych Open, 3, 12–14.CrossRefGoogle ScholarPubMed
Mathew, R., Davies, N., Manthorpe, J. and Iliffe, S. (2016). Making decisions at the end of life when caring for a person with dementia: a literature review to explore the potential use of heuristics in difficult decision-making. BMJ Open, 6, e010416. doi: 10.1136/bmjopen-2015-010416.CrossRefGoogle ScholarPubMed
Miller, L. M., Whitlatch, C. J. and Lyons, K. S. (2016). Shared decision-making in dementia: a review of patient and family carer involvement. Dementia, 15, 1141–1157.CrossRefGoogle ScholarPubMed
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
Moher, D., Liberati, A., Tetzlaff, J., Altman, D. G. and The PG (2009). Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Annals of Internal Medicine, 6, e1000097Google ScholarPubMed
Molyneaux, V., Butchard, S., Simpson, J. and Murray, C. (2011). Reconsidering the term ‘carer’: a critique of the universal adoption of the term ‘carer’. Ageing and Society, 31, 422–437.CrossRefGoogle Scholar
Moore, K. J., Goodison, H. and Sampson, E. L. (2018). The role of the memory service in helping carers to prepare for end of life: a mixed methods study. International Journal of Geriatric Psychiatry, 34, 360–368.Google ScholarPubMed
Murray, E., et al. (2018). A web-based self-management programme for people with type 2 diabetes: the HeLP-Diabetes research programme including RCT. Programme Grants for Applied Research. 06(05).CrossRefGoogle Scholar
Murray, M. A., Miller, T., Fiset, V., O’connor, A. and Jacobsen, M. J. (2004). Decision support: helping patients and families to find a balance at the end of life. International Journal of Palliative Nursing, 10, 270–277.CrossRefGoogle ScholarPubMed
Petriwskyj, A., Gibson, A., Parker, D., Banks, S., Andrews, S. and Robinson, A. (2014). A qualitative metasynthesis: family involvement in decision making for people with dementia in residential aged care. International Journal of Evidence-Based Healthcare, 12, 87–104.CrossRefGoogle ScholarPubMed
Popay, J., et al. (2006). Guidance on the conduct of narrative synthesis in systematic reviews: A product from the ESRC Methods programme. Version, 1, b92.Google Scholar
Saini, G., et al. (2016). An ethnographic study of strategies to support discussions with family members on end-of-life care for people with advanced dementia in nursing homes. BMC Palliative Care, 15, 55.CrossRefGoogle ScholarPubMed
Snyder, E. A., Caprio, A. J., Wessell, K., Lin, F. C. and Hanson, L. C. (2013). Impact of a decision aid on surrogate decision-makers’ perceptions of feeding options for patients with dementia. Journal of the American Medical Directors Association, 14, 114–118.CrossRefGoogle ScholarPubMed
Stacey, D., et al. (2013). Coaching and guidance with patient decision aids: a review of theoretical and empirical evidence. BMC Medical Informatics and Decision Making, 13, S11.CrossRefGoogle ScholarPubMed
Stacey, D., et al. (2017). Decision aids for people facing health treatment or screening decisions. Cochrane Database of Systematic Reviews [Online]. Available at http://cochranelibrary-wiley.com/doi/10.1002/14651858.CD001431.pub5/abstract; accessed 1 January 2019.Google Scholar
Statacorp (2015). Stata Statistical Software: Release 14. College Station, TX: StataCorp LP.Google Scholar
Stirling, C., et al. (2012). Decision aids for respite service choices by carers of people with dementia: development and pilot RCT. BMC Medical Informatics & Decision Making, 12, 21.CrossRefGoogle ScholarPubMed
Van Der Steen, J., et al. (2014). White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliative Medicine, 28, 197–209.CrossRefGoogle ScholarPubMed
Volandes, A. E., Mitchell, S. L., Gillick, M. R., Chang, Y. and Paasche-Orlow, M. K. (2009a). Using video images to improve the accuracy of surrogate decision-making: a randomized controlled trial. Journal of the American Medical Directors Association, 10, 575–80.CrossRefGoogle ScholarPubMed
Volandes, A. E., et al. (2009b). Video decision support tool for advance care planning in dementia: randomised controlled trial. BMJ, 338, b2159.CrossRefGoogle ScholarPubMed
Supplementary material: File

Davies et al. supplementary material

Davies et al. supplementary material
Download Davies et al. supplementary material(File)
File 14.1 KB