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Decision-Making Capacity in Healthcare: Instruments Review and Reflections About its Assessment in the Elderly with Cognitive Impairment and Dementia

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Abstract

The prevalence of neurodegenerative diseases has been significantly increasing in the last decades, and it is expected to continue to grow. These health disorders can impair patients’ decision-making capacity in healthcare. The capacity to make healthcare decisions is a fundamental pillar of informed consent, therefore, it should be carefully assessed. Clinicians’ assessment, when not supported by a standardized tool, has revealed to be unreliable, so the recourse to an instrument of capacity assessment is crucial. The present paper aims to identify and summarize published instruments of healthcare decision-making capacity. To do so, a search of peer-reviewed articles in English, Portuguese and Spanish was conducted. A total of eighteen articles, detailing seventeen assessment instruments were selected. Instruments differ on format, structure, assessed abilities and psychometric properties. Likewise, instruments’ targeted population also varies, with a few being specifically developed for patients with dementia. Although a high number of instruments were found, there is still no gold standard for healthcare decision-making capacity assessment. The lack of a gold standard highlights the need for more research in this field, as well as an effort to develop guidelines and normative data, in order to improve clinical practices.

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Funding

Ana Saraiva Amaral is a PhD student at University of Coimbra, supported with a national PhD grant.

from FCT (Fundação para a Ciência e a Tecnologia), the Portuguese public agency for science, technology and innovation.

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Authors and Affiliations

  1. University of Coimbra, Center for Research in Neuropsychology and Cognitive and Behavioral Intervention (CINEICC), Faculty of Psychology and Educational Sciences (FPCE-UC), Coimbra, Portugal

    Ana Saraiva Amaral, Mário R. Simões & Sandra Freitas

  2. University of Coimbra, Psychological Assessment and Psychometrics Laboratory (PsyAssessmentLab), Faculty of Psychology and Educational Sciences (FPCE-UC), Coimbra, Portugal

    Ana Saraiva Amaral, Mário R. Simões & Sandra Freitas

  3. Health Sciences Research Center (CICS), University of Beira Interior (UBI), Covilhã, Portugal

    Ana Saraiva Amaral

  4. University of Beira Interior, Department of Psychology and Education (UBI), Covilhã, Portugal

    Rosa Marina Afonso

  5. Center for Health Technology and Services Research (CINTESIS), University of Porto, Porto, Portugal

    Rosa Marina Afonso

  6. University of Coimbra, Faculty of Psychology and Educational Sciences (FPCE-UC), Coimbra, Portugal

    Mário R. Simões & Sandra Freitas

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  1. Ana Saraiva Amaral
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All the authors participated actively in the study design, data collection and analysis and manuscript preparation.

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Correspondence to Ana Saraiva Amaral.

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Amaral, A.S., Afonso, R.M., Simões, M.R. et al. Decision-Making Capacity in Healthcare: Instruments Review and Reflections About its Assessment in the Elderly with Cognitive Impairment and Dementia. Psychiatr Q 93, 35–53 (2022). https://doi.org/10.1007/s11126-020-09867-7

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