Skip to main content Accessibility help
×
Home

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

  • Nathan Davies (a1) (a2), Brooke Schiowitz (a1), Greta Rait (a3), Victoria Vickerstaff (a2) and Elizabeth L. Sampson (a2) (a4)...

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.

Copyright

Corresponding author

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: n.m.davies@ucl.ac.uk.

References

Hide All
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, 446456.
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. 392401). Philadelphia: W. B. Saunders.
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.
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.
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.
Davies, N. (2015). Talking with family carers about end-of-life care for people with dementia. European Journal of Palliative Care, 22, 68.
Davies, N. and Iliffe, S. (2016). End of life care − why those with dementia have different needs. BMJ, 353, i2171.
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, 919930.
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.
Davies, N., et al. (2018). Guiding practitioners through end of life care for people with dementia: The use of heuristics. PLOS ONE, 13, e0206422.
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.
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, 251255.
Elwyn, G., et al. (2006). Developing a quality criteria framework for patient decision aids: online international Delphi consensus process. BMJ, 333, 417.
Emanuel, E. J. and Emanuel, L. L. (1992). Proxy decision making for incompetent patients: an ethical and empirical analysis. JAMA, 267, 20672071.
Ersek, M., et al. (2014). Provider staffing effect on a decision aid intervention. Clinical Nursing Research, 23, 3653.
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, 20092016.
Hanson, L. C., et al. (2017). Effect of the goals of care intervention for advanced dementia: a randomized clinical trial. JAMA Internal Medicine, 177, 2431.
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.
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, 118127.
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, 1214.
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.
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, 11411157.
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, 313316.
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, e1000097
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, 422437.
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, 360368.
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).
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, 270277.
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, 87104.
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.
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.
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, 114118.
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.
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.
Statacorp (2015). Stata Statistical Software: Release 14. College Station, TX: StataCorp LP.
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.
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, 197209.
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.
Volandes, A. E., et al. (2009b). Video decision support tool for advance care planning in dementia: randomised controlled trial. BMJ, 338, b2159.

Keywords

Type Description Title
WORD
Supplementary materials

Davies et al. supplementary material
Davies et al. supplementary material

 Word (14 KB)
14 KB

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

  • Nathan Davies (a1) (a2), Brooke Schiowitz (a1), Greta Rait (a3), Victoria Vickerstaff (a2) and Elizabeth L. Sampson (a2) (a4)...

Metrics

Altmetric attention score

Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed