How do dementia researchers view support tools for informed consent procedures of persons with dementia?

Theresa S Wied,Aoife Poth,Frank Oswald,Julia Haberstroh,Johannes Pantel

doi:10.1007/s00391-020-01779-2

Theresa S Wied, Aoife Poth + Show 3 more

Open Access

https://doi.org/10.1007/s00391-020-01779-2

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Abstract

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.

Highlights

Introduction and backgroundInformed consent (IC) has to be obtained before patients can receive medical treatment or participate in research
The results of this study showed that the participating dementia researchers were open to the use of decision support measures in people with dementia (PwD) and were willing to apply the support tools in practice
The aim of the present study was to examine how dementia researchers would evaluate eight tools defined as part of the transnational ENSURE project to support decision-making of PwD during ICPs

Summary

Introduction

Informed consent (IC) has to be obtained before patients can receive medical treatment or participate in research Such IC has to meet three criteria: 1) a person with decision-making capacity 2) makes a free choice 3) following adequate information disclosure [1]. To assess whether the criteria required for IC are met, the focus is generally placed on the cognitive deficits and abilities that are impaired in PwD. As this approach does not correspond to the right to autonomy and equal legal capacity granted to PwD under the UN Convention on the Rights of Persons with Disabilities (UN-CRPD, in particular Article 12), it often ends in PwD’s having their autonomy taken away [3]; how-. 19 38.0 ± 2.53 (24–57) Country Germany Portugal Status

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