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

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.