Informed Consent to Research with Cognitively Impaired Adults: Transdisciplinary Challenges and Opportunities

Clin Gerontol. 2017 Jan-Feb;40(1):63-73. doi: 10.1080/07317115.2016.1201714. Epub 2016 Jun 20.

Abstract

Due to issues related to informed research consent, older adults with cognitive impairments are often excluded from high-quality studies that are not directly related to cognitive impairment, which has led to a dearth of evidence for this population. The challenges to including cognitively impaired older adults in research and the implications of their exclusion are a transdisciplinary issue. The ethical challenges and logistical barriers to conducting research with cognitively impaired older adults are addressed from the perspectives of three different fields-social work, emergency medicine, and orthopaedic surgery. Issues related to funding, study design, intervention components, and outcomes are discussed through the unique experiences of three different providers. A fourth perspective-medical research ethics-provides alternatives to exclusion when conducting research with cognitively impaired older adults such as timing, corrective feedback and plain language, and capacity assessment and proxy appointments. Given the increasing aging population and the lack of evidence on cognitively impaired older adults, it is critical that researchers, funders, and institutional review boards not be dissuaded from including this population in research studies.

Keywords: Cognitive impairment; ethics; informed consent; older adults; transdisciplinary.

Publication types

  • Review
  • Research Support, N.I.H., Extramural

MeSH terms

  • Aged
  • Biomedical Research / ethics*
  • Cognitive Dysfunction / psychology
  • Ethics Committees, Research / ethics
  • Ethics Committees, Research / standards*
  • Humans
  • Informed Consent / ethics*
  • Patient Selection / ethics*
  • Research Design