The Human Right to Make One’s Own Choices – Implications for Supported Decision-Making in Persons With Dementia

Abstract

Abstract. Autonomy is a human right and implies the “freedom to make one’s own choices.” The UN Convention on the Rights of Persons with Disabilities (UN-CRPD) is a human rights treaty granting persons with disabilities, such as persons with dementia (PwD), legal capacity regardless of their impairments. State parties and healthcare practitioners (HCP) are obliged to enable PwD to make decisions with legal effect. The UN-CRPD does not specify the nature of support, thus, the implementation of supported decision-making (SDM) remains unclear. The objective of this review is to compile empirical support strategies for decision-making in dementia and address the specific needs of PwD. Using search terms related to “dementia,” “decision-making,” and “support,” we conducted a systematic review (following PRISMA guidelines) and searched MEDLINE and PsycINFO for empirical studies. References were cross-referenced. Information on support strategies was extracted, summarized, and thematically categorized to provide an overview of international literature on SDM in dementia. Initially, we found 2,348 articles. Thirty-five full-text articles were screened for eligibility (criteria followed PICOS model), 11 of which met the inclusion criteria. Strategies to support decision-making in PwD were categorized according to approach. Support began either with the individual and his/her specific abilities or with the social, spatial, and procedure-oriented environment. As the first systematic review on SDM for PwD, this article contributes to the implementation of SDM in practice. Despite heterogeneous evidence, the findings have crucial implications for HCP on how to enable PwD to exercise their human right to make decisions with legal effect.

Risk assessment for people living with dementia: a systematic review

“…Our review showed HCPs were sensitive to PLwD's need for autonomy and independence and supported risk enablement in care planning where possible. Similarly, Wied et al (2019) found that HCPs do not deny PLwD their right to make their own decisions and they are supported with decisionmaking in terms of care. A key challenge for HCPs is communication with PLwD and carers when perceptions of risk differ or there is lack of insight (Stevenson and Taylor, 2017).…”

“…It is essential to balance independence and risks when planning care (Mitchell and Glendinning, 2008;Taylor, 2006), and PLwD want to and should be involved in that decision-making process (Pel-Littel et al, 2021;Wied et al, 2019). Effective risk identification and assessment can inform the most appropriate way to manage risk and promote risk enablement that involves balancing the rights of PLwD to retain as much control as possible, with those of society and families' wishes to reduce risks and promote safety at home.…”