Advance directives in dementia research : a medical ethical inquiry

Dementia is highly prevalent and incurable. The participation of dementia patients in clinical research is indispensable if we want to find an effective treatment for dementia. However, one of the primary challenges in dementia research is the patients’ gradual loss of the capacity to consent. Patients with dementia are characterized by the fact that, at an earlier stage of their life, they were able to give their consent to participation in research. Therefore, the phase when patients are still competent to decide offers a valuable opportunity to authorize research, by using an Advance Research Directive (ARD). Yet, the use of ARDs as an authorization for research participation remains controversial, and raises ethical, legal and practical questions.

Karin Jongsma discusses in her dissertation three major questions:
What are the morally relevant characteristics of dementia research participants?
How should opposing former and current wishes of dementia patients be understood?
And Are advance research directives an appropriate means for dementia patients to provide research authorization?

She shows that Advance Research Directives are a legal and morally acceptable manner to provide initial consent to research participation, as long as we provide additional safeguards during the research trial.