Empowered by participation: Patients’ and caregivers’ experiences in the law clinic. Multidisciplinary dementia research at the intersection of law and medicine

BackgroundA pilot study, the Law Clinic, implemented extensive cognitive, neuropsychiatric, and legal assessments within an interdisciplinary framework. A study design of this kind has not been previously applied. The study was necessary to generate knowledge on the relationship between symptoms of dementia and patients' legal status.ObjectiveThe pilot aimed to determine, through participants' experiences, whether expanding such multi-component research is ethically sustainable, and whether clinical studies that combine medical and legal perspectives of this nature can feasibly be conducted.Methods20 people with Alzheimer's disease and related disorders and 20 caregivers (spouses) participated in the study, which included several assessments and interviews for both parties. In the final interview, participants reflected on their experiences participating in the study. The transcribed material was analyzed using inductive content analysis to identify key themes related to participation and perceived burden.ResultsParticipants reported positive experiences, with 90% indicating no burden. Most described the study as meaningful, empowering, and even enjoyable. Separate interviews for patients and caregivers were considered essential for open communication and comprehensive perspectives. The findings support scaling up the Law Clinic Study.ConclusionsThe novel Law Clinic Study protocol proved sustainable and feasible. Thoughtful design, and multidisciplinary expertise can ensure respectful and meaningful engagement in research for people with Alzheimer's disease and related disorders and their caregivers. Our findings suggest that research addressing complex and sensitive issues through broad interdisciplinary methods can be ethically sound, generate unique knowledge that would otherwise remain inaccessible, and may even prove empowering for participants.