COVID-19 raises urgent ethical issues for each of us. Our experts shape real-time responses.
  • IRB: ETHICS & HUMAN RESEARCH

Research with Dementia Patients in the Nursing Home Setting: A Protocol for Informed Consent and Assent

This paper describes the implementation and refinement of a theory- and research-based Partnership of Consent Protocol that we used for two feeding skills studies involving patients with dementia conducted in the nursing home setting.

There are currently no best practice guidelines for obtaining informed consent from persons with dementia who are recruited to participate in research. This paper describes the implementation and refinement of a theory- and research-based Partnership of Consent Protocol that we used for two feeding skills studies involving patients with dementia conducted in the nursing home setting. The Partnership of Consent Protocol consists of separating the consent and assent processes and involving the persons with dementia, their representative(s), the researchers, and key nursing home staff members. Informed consent was obtained from the representatives, and assent or dissent was ascertained at each point of contact with the persons with dementia. The details provided in the assent protocol are helpful for assuring that there are adequate additional protections for persons with dementia recruited for and enrolled in research studies. The studies we describe were successful in involving persons with dementia who had moderate to severe stages of the disease, and decisional capacity was honored on their behalf with verbal assent.

Batchelor-Aselage M, Amella E, Zapka J, Mueller M, Beck C. Research with dementia patients in the nursing home setting: A protocol for informed consent and assent. IRB: Ethics & Human Research 2014;36(2):14-20.

The Hastings Center has never shied away from the toughest ethical challenges faced by society.

LET US SHARE OUR EXPERIENCES WITH YOU

Interests
The Hastings Center has never shied away from the toughest ethical challenges faced by society.

LET US SHARE OUR EXPERIENCES WITH YOU!

Interests