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. Yet, the use of ARDs as an authorization for research participation remains controversial. In this paper we discuss the role of autonomous decision-making and the protection of incompetent research subjects. We will show why ARDs are a morally defensible basis for the inclusion of this population in biomedical research and that the use of ARDs is compatible with the protection of incompetent research subjects. (shrink)

Dementia patients in the moderate-late stage of the disease can, and often do, express different preferences than they did at the onset of their condition. The received view in the philosophical literature argues that advance directives which prioritize the patient’s preferences at onset ought to be given decisive moral weight in medical decision-making. Clinical practice, on the other hand, favors giving moral weight to the preferences expressed by dementia patients after onset. The purpose of this article is to show that (...) the received view in the philosophical literature is inadequate and is out of touch with real clinical practice. I argue that having dementia is a cognitive transformative experience and that preference changes which result from this are legitimate and ought to be given moral weight in medical decision-making. This argument ought to encourage us to reduce our confidence in the moral weight of advance directives for dementia patients. (shrink)

Persons with dementia often prefer to participate in decisions about their health care, but may be prevented from doing so because healthcare decision-making law facilitates use of advance directives or surrogate decision makers for persons with decisional impairments such as dementia. Federal and state disability law provide alternative decision-making models that do not prevent persons with mild to moderate dementia from making their own healthcare decisions at the time the decision needs to be made. In order to better promote autonomy (...) and wellbeing, persons with dementia should be accommodated and supported so they can make their own healthcare decisions. (shrink)