Abstract
BackgroundResearch with persons with dementia is important to better understand the causes of dementia and to develop more effective diagnostics, therapies, and preventive measures. Advance Research Directives (ARDs) have been suggested as a possible solution to include persons with dementia in research in an ethically sound way. Little is known about how people, especially those affected by cognitive impairment, understand and regard the use of ARDs, as empirical studies are mainly conducted with healthy, non-cognitively impaired, participants.MethodsThis qualitative study, a sub-study of a larger study on the evaluation of ARDs in the context of dementia research in Germany, consists of semi-structured in-depth interviews with 24 persons with cognitive impairment.ResultsOur results indicate that most participants consider ARDs a valuable tool for allowing them to make their own decisions. Many would prefer to draft an ARD when they are still healthy or soon after the diagnosis of cognitive impairment. Participants suggested that the completion of ARDs can be advanced with the provision of practical support and increased dissemination of information on ARDs in society.ConclusionPersons with subjective or mild cognitive impairment (SCI/MCI) suggested several motivating factors and concerns for completing an ARD. Clinicians need to be trained to accommodate patients’ needs for sufficient and adequate information. Furthermore, a standardised, partly pre-formulated template could be helpful for drafting an ARD. As such tested templates are currently not yet available, this addresses the urgent need for more translational and implementation research for the use of ARDs.
Highlights
Research with persons with dementia is important to better understand the causes of dementia and to develop more effective diagnostics, therapies, and preventive measures
Three interviewees were not sure or not willing to share whether they had a diagnosis of Subjective Cognitive Impairment (SCI) or Mild Cognitive Impairment (MCI), during the interview it became sufficiently clear that they have a form of cognitive impairment, it was decided to include these interviews in the analysis
Since the new legal regulation enables participation in non-therapeutic studies tied to the condition of an Advance Research Directive (ARD) being in place, several interviewees reflected on the desirability and consequences of participation in such research studies
Summary
Research with persons with dementia is important to better understand the causes of dementia and to develop more effective diagnostics, therapies, and preventive measures. Advance Research Directives (ARDs) have been suggested as a possible solution to include persons with dementia in research in an ethically sound way. Other means of including persons with dementia in research are being explored and the use of advance research directives (ARDs) has become a prominent alternative over the past couple of years. How the difference between prior preferences and current wishes is interpreted can have crucial implications for how ARDs are dealt with Aside from these ethicalphilosophical questions, questions with regard to the implementation have been raised. These affect the uptake of ARDs and their usability for patients
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Free) 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a call
