Medical and Research Consent Decision-Making Capacity in Patients with Alzheimer’s Disease: A Systematic Review

Article type: Research Article

Authors: van Duinkerken, Eelco^{a; b; c; *} | Farme, Juliana^d | Landeira-Fernandez, Jesus^d | Dourado, Marcia C.^e | Laks, Jerson^{e; f} | Mograbi, Daniel C.^{d; g}

Affiliations: [a] Center for Epilepsy, Instituto Estadual do Cérebro Paulo Niemeyer, Rio de Janeiro, Brazil | [b] Department of Medical Psychology, Amsterdam University Medical Centers, Free University, Amsterdam, the Netherlands | [c] Amsterdam Diabetes Center / Department of Internal Medicine, Amsterdam University Medical Centers, Free University, Amsterdam, the Netherlands | [d] Department of Psychology, Pontifícia Universidade Católica Rio de Janeiro, Rio de Janeiro, Brazil | [e] Alzheimer’s Disease Center / Institute of Psychiatry, Federal University of Rio de Janeiro, Rio de Janeiro, Brazil | [f] Post Graduation Program in Translational Biomedicine- Universidade do Grande Rio, Duque de Caxias, Rio de Janeiro, Brazil | [g] Institute of Psychiatry, Psychology and Neuroscience, King’s College London, London, UK

Correspondence: [*] Correspondence to: Eelco van Duinkerken, PhD, Center for Epilepsy, Instituto Estadual do Cérebro Paulo Niemeyer, Rua do Rezende 156, Centro - Rio de Janeiro, RJ, CEP: 20230-024. Brazil. Tel.: +55 21 22779330; E-mail: e.vanduinkerken@vumc.nl.

Abstract: The capacity to make decisions is an important feature of daily living, which is closely linked to proper cognitive functioning. In conditions in which cognitive functioning becomes compromised, such as in Alzheimer’s disease (AD), decision-making capacity can also get affected. Especially in AD, this has important implications, since over the course of the condition many important clinical decisions have to be made. For caregivers as well as physicians, it is sometimes difficult to determine how and when to intervene in the decision-making process. The aim of this systematic literature review was to identify studies that have evaluated medical and research consent decision-making capacity in patients with AD. Studies consistently show that decision-making capabilities are impaired in patients with AD. The cognitive and neuronal correlates of this process are, however, poorly studied. The few studies that investigated correlations have shown worse cognitive performance, mainly on the MMSE, to be related to poorer decision-making capacity. As most of these correlations have been performed in groups combining patients and controls, it remains unknown if these associations are disease specific. There is a need to study more systematically the decision-making process in relation to cognitive functioning and neural correlates to be able to develop a framework of decision-making capacity in AD, ultimately aiding clinicians and caregivers to understand and evaluate those capabilities in patients.

Keywords: Alzheimer’s disease, cognition, decision-making, neuroimaging, systematic review

DOI: 10.3233/JAD-180311

Journal: Journal of Alzheimer's Disease, vol. 65, no. 3, pp. 917-930, 2018