Capacity to Give Informed Consent in Research and Evaluation with Individuals with Dementia
Informed consent is arguably the cornerstone of ethical social science research and evaluation. Before an institutional review board-approved (IRB) project can begin, researchers and evaluators are required to openly communicate with potential subjects about the benefits and possible risks of their participation and to establish their voluntary willingness to participate.1 When a proposed project involves individuals who have dementia, a progressive and degenerative neurological disorder impacting comprehension, memory, attention span, and communication, ethical concerns arise regarding their ability to provide initial consent.2 In light of the increasing …show more content…
When consent to participate in a study or program is determined by proxies, individuals with dementia may be intentionally or unintentionally coerced and/or exploited before and during a project, especially in situations where a proxy anticipates real or perceived benefits to participation (e.g., compensation, access to goods/services).6 Additionally, although proxies and ‘gatekeepers’ of individuals with dementia, including practitioners and family members or carers, have valuable insights that should be garnered through research and evaluation, it has been suggested that proxy accounts may be inconsistent with the views of individuals with dementia themselves and significantly underestimate their subjective quality of life.9,10 In such instances, project findings may misrepresent the experiences of individuals with dementia and potentially restrict their opportunities for self-determined living. Further, there is a growing body of evidence that the meaningful inclusion of individuals with dementia in research and evaluation may be beneficial and therapeutic, enhancing their self-esteem, feelings of worth and capability,11 and validating their experiences.11,12 Focusing on proxy consent and accounts to the exclusion of subjects with dementia may therefore not only …show more content…
In response to the deficiencies in prevailing capacity to consent procedures for individuals with dementia in social science research, a process-based model has emerged within the gerontological research community during recent years.2 Grounded in the ethical principle of respect for persons, process-based capacity to consent conceptualizes the establishment of initial consent as dynamic and ongoing and assumes capacity at project inception.13 In this model, researchers and evaluators are encouraged to work with carers and individuals with dementia to learn about their life histories and how they typically consent to care or other daily activities. This rapport-building assists researchers and evaluators in subsequently introducing information about a project in a way that will be most acceptable and accessible to subjects with dementia, maximizing the likelihood that they will be able to give their informed consent to participate. Further, process-based capacity to consent promotes the re-establishment of consent, through verbal and nonverbal communication techniques, during a single intervention point and across the intervention period.14 While determining capacity to consent through this method is likely more time-intensive and costly than utilizing
Informed consent is arguably the cornerstone of ethical social science research and evaluation. Before an institutional review board-approved (IRB) project can begin, researchers and evaluators are required to openly communicate with potential subjects about the benefits and possible risks of their participation and to establish their voluntary willingness to participate.1 When a proposed project involves individuals who have dementia, a progressive and degenerative neurological disorder impacting comprehension, memory, attention span, and communication, ethical concerns arise regarding their ability to provide initial consent.2 In light of the increasing …show more content…
When consent to participate in a study or program is determined by proxies, individuals with dementia may be intentionally or unintentionally coerced and/or exploited before and during a project, especially in situations where a proxy anticipates real or perceived benefits to participation (e.g., compensation, access to goods/services).6 Additionally, although proxies and ‘gatekeepers’ of individuals with dementia, including practitioners and family members or carers, have valuable insights that should be garnered through research and evaluation, it has been suggested that proxy accounts may be inconsistent with the views of individuals with dementia themselves and significantly underestimate their subjective quality of life.9,10 In such instances, project findings may misrepresent the experiences of individuals with dementia and potentially restrict their opportunities for self-determined living. Further, there is a growing body of evidence that the meaningful inclusion of individuals with dementia in research and evaluation may be beneficial and therapeutic, enhancing their self-esteem, feelings of worth and capability,11 and validating their experiences.11,12 Focusing on proxy consent and accounts to the exclusion of subjects with dementia may therefore not only …show more content…
In response to the deficiencies in prevailing capacity to consent procedures for individuals with dementia in social science research, a process-based model has emerged within the gerontological research community during recent years.2 Grounded in the ethical principle of respect for persons, process-based capacity to consent conceptualizes the establishment of initial consent as dynamic and ongoing and assumes capacity at project inception.13 In this model, researchers and evaluators are encouraged to work with carers and individuals with dementia to learn about their life histories and how they typically consent to care or other daily activities. This rapport-building assists researchers and evaluators in subsequently introducing information about a project in a way that will be most acceptable and accessible to subjects with dementia, maximizing the likelihood that they will be able to give their informed consent to participate. Further, process-based capacity to consent promotes the re-establishment of consent, through verbal and nonverbal communication techniques, during a single intervention point and across the intervention period.14 While determining capacity to consent through this method is likely more time-intensive and costly than utilizing