Procedural Framework to Facilitate Hospital-Based Informed Consent for Dementia Research

Timothy R. Holden, Sarah Keller, Alice Kim, Michael Gehring, Emily Schmitz, Carol Hermann, Andrea Gilmore-Bykovskyi, Amy J.H. Kind

Research output: Contribution to journalArticle

1 Scopus citations

Abstract

Improving quality and delivery of care for people with Alzheimer disease and related dementias (ADRD) requires a comprehensive research agenda that encompasses the entire care continuum. Logistical and ethical challenges of informed consent for research participation of persons with ADRD include determination of capacity to consent, surrogate consent when capacity to consent is compromised, timely identification of the legally authorized representative (LAR) providing surrogate consent, and balancing residual autonomy with surrogate consent. Short stays; limited access to patients, caregivers, and LARs; and fluctuating influences of acute illness on capacity determination compound these challenges in the acute care setting. To address these challenges, we worked with the University of Wisconsin Health Sciences Institutional Review Board to develop a procedural framework for obtaining informed consent from hospitalized individuals with ADRD and their caregivers to participate in a minimal risk care intervention. The framework is specially designed for minimal risk situations in which rapid enrollment is a necessity and uses rapid identification of surrogates to consent for patients who lack legal capacity to make medical decisions, indicated by an activated healthcare power of attorney, and individualized formal assent procedures for patients who lack capacity to consent. These methods were proven effective in facilitating hospital-based recruitment in an ongoing randomized controlled trial and provide a basis for increasing access to acute care clinical research for persons with ADRD. Bolstering research participation through more easily used consent procedures during acute illness is critical to fostering improvements in the delivery of high-quality care to persons with ADRD. J Am Geriatr Soc 66:2243–2248, 2018.

Original languageEnglish
Pages (from-to)2243-2248
Number of pages6
JournalJournal of the American Geriatrics Society
Volume66
Issue number12
DOIs
StatePublished - Dec 2018

Keywords

  • Alzheimer's disease
  • dementia
  • ethics
  • informed consent
  • research

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    Holden, T. R., Keller, S., Kim, A., Gehring, M., Schmitz, E., Hermann, C., Gilmore-Bykovskyi, A., & Kind, A. J. H. (2018). Procedural Framework to Facilitate Hospital-Based Informed Consent for Dementia Research. Journal of the American Geriatrics Society, 66(12), 2243-2248. https://doi.org/10.1111/jgs.15525