The right to make autonomous decisions is enshrined in law. However, the question how persons with cognitive deficits can be enabled to make autonomous decisions has not been satisfactorily addressed. In particular, the concept of supported decision-making and its implementation into practice has been poorly explored for persons with dementia (PwD).This article describes the empirical development and implementation of support tools to enhance informed consent processes (so called enhanced consent procedures/ECP) for PwD on whether to undergo lumbar puncture. In the end of the process of pilot testing and further development of the tools, the following tools were defined: (1) Standardized Interview Structure, (2) Elaborated Plain Language, (3) Ambience and Room Design, (4) Keyword Lists, (5) Priority Cards, (6) Visualization, and (7) Simplified Written Informed Consent (Patient Information), as well as the general attitude (8) Person-Centered Attitude of the facilitator. As the development, implementation and evaluation of ECP tools is one objective of the transnational ENSURE project, we also include an overview of future empirical procedures. So far, our findings can serve as a selection of possibilities to support PwD in decision-making and help practitioners achieve an appropriate balance between the autonomy and protection of PwD in complex decision-making situation. Future studies should address the question if the proposed set of tools is effective to enhance informed consent processes in PwD.

The study aimed to assess how dementia researchers view eight support tools that have been defined to enhance informed consent (IC) procedures for people with dementia (PwD). In an online survey, 19 dementia researchers from Germany and Portugal evaluated the tools in terms of 4 implementation criteria. Overall, they all had a very positive attitude towards the support tools, whereby the tools person-centered attitude of the researcher and elaborated plain language were the most highly rated of the eight tools. Our findings also indicated that familiar support tools were assessed more favorably than those that were previously unknown. Overall, the results of this study showed that the participating dementia researchers were open to the use of decision support measures in PwD and were willing to apply the support tools in practice.

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.

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