People With Dementia: Capacity to Consent to Research Participation

Embarking on research with older adults whether in the community, in assisted living, or in the long-term care setting can be challenging from the very beginning. Depending on the purpose and specific aims of a study, the sample may include older adults who have some level of dementia. If so, the question of the older adult with dementia’s capacity to give informed consent may be in question. This challenge to the ability to provide informed consent could preclude researchers from even pursing research with this population. However, the negative public health impact of dementia is so severe that this population needs further study. The challenge for us as nurse researchers is to recognize and protect the rights and interests of individuals with dementia who are asked to provide informed consent to participate in research (Slaughter, Cole, Jennings, & Reimer, 2007). Informed consent is defined as the provision of voluntary authorization given by an individual who has the capacity to understand the research protocol and decide whether to participate in the research (Black et al., 2008). Key elements of informed consent process include the verbal and written description of the expectations of participation in the research protocol including the purpose, risks, and benefits. Also included in the expectations of informed consent is that individual’s participation is voluntary and that a participant can withdraw at any time without penalty (Black et al., 2008; Karlawish, 2008). Editorial