Shared Decision Making and its Application to People with Dementia
DOI:
https://doi.org/10.14422/rib.i29.y2025.010Keywords:
shared decision-making, personal autonomy, dementiaAbstract
Shared decision-making has been gaining more space as it represents a conciliatory model between professional knowledge and the individual's right to self-determination. This article proposes a debate on the use of shared decision-making for patients with dementia. Such patients tend to be considered incapable, and it is common to designate substitutes when decisions have to be made. However, there are consistent reports in the literature that patients are not unable to express needs and references. Several factors are highlighted as capable of influencing the greater or lesser involvement of these individuals, from the stage of the disease, characteristics of the caregiver, such as age and degree of kinship, and the type of decision to be made. The conclusion drawn is that shared decision-making can represent a powerful tool, offering the possibility for patients to exercise their personal autonomy, which will bring better outcomes for them and the professionals involved.
Downloads
References
Barton, J. L., Kunneman, J. F., Hargraves, I., LeBlanc, A., Brito, J. P., Scholl, I., & Montori, V. M. (2020). Envisioning Shared Decision Making: A Reflection for the Next Decade. MDM Policy Practice, 5(2), 2381468320963781. https://doi.org/10.1177/2381468320963781
Carpenter, C. R., Leggett, J., Bellolio, F., Betz, M., & Carnahan, R. M. (2022). Emergency Department Communication in Persons Living with Dementia and Care Partners: A Scoping Review. Journal of the American Medical Directors Association, 23(8), 1313.e15-1313.e46. https://doi.org/10.1016/j.jamda.2022.02.024
Charles, C., Gafni, C., & Whelan, T. (1997). Shared decision-making in the medical encounter: what does it mean? (or it takes at least two to tango). Social Science & Medicine, 44(5), 681-92. https://doi.org/10.1016/S0277-9536(96)00221-3
Daly, R. L., Bunn, F., & Goodman, C. (2018). Shared decision-making for people living with dementia in extended care settings: a systematic review. BMJ Open, 8(6), e018977. https://doi.org/10.1136/bmjopen-2017-018977
Dewing, J., & Dijk, S. (2016). What is the current state of care for older people with dementia in general hospitals? A literature review. Dementia, 215(1), 106-124. https://doi.org/10.1177/1471301213520172
Eler, K. (2020). Tomada de decisão compartilhada; uma nova forma de tomar decisões em saúde. Em K. Eler, Temas Atuais em Direito do Paciente (pp. 16-30). Atenea Editora. https://doi.org/10.22533/at.ed.7332105084
Elwyn, G., Frosch, D., Thomson, R., Joseph-Williams, N., Lloyd, A., Kinnersley, P., Cording, E., Tomson, D., Dodd, C., Rollnick, S., Edwards, A., & Barry, M. (2012). Shared Decision Making: A Model for Clinical Practice. Journal of General Internal Medicine, 27(10), 1361-1367. https://doi.org/10.1007/s11606-012-2077-6
Elwyn, G. (2021). Shared decision making: What is the work? Patient Education and Counseling, 104(7), 1591- 1595. https://doi.org/10.1016/j.pec.2020.11.032
Groen-van de Vem, L., Smits, C., Span, M., Jukema, J., Coppoolse, K., Lange, J. de, Eefsting, J., Vernooij-Dassen, M., Moniz-Cook, E., & Jeon, Y-H. (2018). The challenges of shared decision making in dementia care networks. International Psychogeriatrics, 30(6), 843-857. https://doi.org/10.1017/S1041610216001381
Hamann, J., Bronner, K., Margull, J., Mendel, R., Diehl-Schmid, J., Bühner, M., Klein, R., Schneider, A., Kurz, A., & Perneczky, R. (2011). Patient participation in medical and social decisions in Alzheimer’s disease. Journal of American Geriatrics Society, 59(11), 2045-2052. https://doi.org/10.1111/j.1532-5415.2011.03661.x
Hargraves, I., LeBlanc, A., Shah, N. D., & Montori, V. M. (2016). Shared Decision Making: The Need For Patient-Clinician Conversation, Not Just Information. Health Affairs, 35(4), 627-9. https://doi.org/10.1377/hlthaff.2015.1354
Kim, S. Y., Karlawish, J., & Caine, E. D. (2002). Current state of research on decision-making competence of cognitively impaired elderly persons. American Association for Geriatric Psychiatry, 10(2), 151-165. https://pubmed.ncbi.nlm.nih.gov/11925276/
Miller, L. M., Whitlatch, C. J., & Lyons, K. S. (2016). Shared decision-making in dementia: A review of patient and family carer involvement. Dementia, 15(5), 1141-57. https://doi.org/10.1177/1471301214555542
Montori, V. M., Ruissen, M. M., Hargraves, I. G., Brito, J. P., & Kunneman, M. (2022). Shared decision-making as a method of care. BMJ Evidence-Based Medicine, 28(4), 213-17. https://doi.org/10.1136/bmjebm-2022-112068
Parke, B., Hunter, K. F., Strain, L. A., Marck, P. B., Waugh, E. H., & McClelland, A. J. (2013). Facilitators and barriers to safe emergency department transitions for community dwelling older people with dementia and their caregivers: a social ecological study. International Journal of Nursing Studies, 50(9), 1206-1218. https://doi.org/10.1016/j.ijnurstu.2012.11.005
Phinney, A., Dahlke, S., & Purves, B. (2013). Shifting patterns of everyday activity in early dementia: experiences of men and their families. Journal of Family Nursing, 19(3), 348-74. https://doi.org/10.1177/1074840713486727
Quill, T. E., & Cassel, C. K. (1995). Nonabandonment: a central obligation for physicians. Annals of Internal Medicine, 122(5), 368–374. https://doi.org/10.7326/0003-4819-122-5-199503010-00008
Samsi, K., & Manthorpe, J. (2013). Everyday decision-making in dementia: findings from a longitudinal interview study of people with dementia and family carers. International Psychogeriatrics, 25(6), 949-961. https://doi.org/10.1017/S1041610213000306
Seidenfeld, J., Bellolio, F., Vashi, A., Van Houtven, C., & Hastings, S. (2023). Shared Disposition Decision Making in the Emergency Department for Persons Living with Dementia. Journal of Geriatric Emergency Medicine, 4(2), 1-7. https://doi.org/10.17294/2694-4715.1057
Sullivan, M. D. (2017). Advancing from activated patient to autonomous patient. Em The Patient as Agent of Health and Health Care: Autonomy in Patient-Centered Care for Chronic Conditions (pp. 192-228). Oxford University Press.
Tyrell, J. Genin, N., & 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(4), 479-502. https://doi.org/10.1177/1471301206069915
United Nations. (2016). The United Nations Convention on the Rights of Persons with Disabilities (CRPD). United Nations. https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html#Fulltext
Downloads
Published
Issue
Section
License
Copyright (c) 2025 Jose Reinaldo Madeiro, Aline Albuquerque
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
The authors of articles published in Revista Iberoamericana de Bioética retain the intellectual property rights over their works and grant the journal their distribution and public communication rights, consenting to their publication under a Creative Commons Attribution-NonCommercial-NoDerivates 4.0 Internacional. Authors are encouraged to publish their work on the Internet (for example, on institutional or personal pages, repositories, etc.) respecting the conditions of this license and quoting appropriately the original source.
