In this commentary, I consider what can go wrong in research when tensions arise between methodology and procedural ethics. I recount difficulties negotiating and implementing a participant recruitment strategy during my doctoral research project, which aimed to explore the experiences of people affected by dementia in the United Kingdom who were disengaged from services. To access this hard-to-reach population, I intended to adopt an informal recruitment strategy, snowball sampling from personal contacts and striking up conversations in public places. The procedural ethics committee were unhappy with this approach, deeming it potentially coercive. They suggested a more formal recruitment strategy enacted via emailing community organisations and churches. This approach entailed practical consequences that ultimately weakened the study sample, data and findings. This case raises questions about the negotiation of tensions between methodology and procedural ethics in gerontological research.
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http://dx.doi.org/10.1080/01634372.2018.1564718 | DOI Listing |
Background: Availability of amyloid modifying therapies will dramatically increase the need for disclosure of Alzheimer's disease (AD) related genetic and/or biomarker test results. The 21st Century Cares Act requires the immediate return of most medical test results, including AD biomarkers. A shortage of genetic counselors and dementia specialists already exists, thus driving the need for scalable methods to responsibly communicate test results.
View Article and Find Full Text PDFRecent breakthrough findings in clinical trials on amyloid-lowering therapies have led to the approval of these drugs for the treatment of amyloid- positive elderly individuals who show symptoms of mild cognitive impairment and mild dementia. The next frontier is the testing the efficacy of treatments for secondary prevention of AD dementia. Phase III trials in asymptomatic AD are already under way, raising a host of novel questions on the sequelae of trial participation such as the emotional and social repercussions of biomarker disclosure, understanding the risk of side effects and eventually weighing the risk-benefit ratio of amyloid-lowering treatment.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
University of Pennsylvania, Philadelphia, PA, USA.
Background: People living with Alzheimer's disease and related dementias confront numerous decisions that affect their wellbeing, as well as that of their family members. Research demonstrates the importance of family involvement in such decision making, yet there is a lack of knowledge about how patients and families work together to make decisions and how families can best provide decisional support.
Methods: Semi-structured interviews were conducted separately with 15 patients diagnosed with mild cognitive impairment (MCI) or mild dementia, identified through a National Institute on Aging-funded Alzheimer's Disease Research Center, and 14 care partners.
Alzheimers Dement
December 2024
Department of Psychiatry and Psychotherapy, Medical Faculty, University of Cologne, Cologne, Germany.
Background: Due to further development of diagnostic methods of early-stage diagnosis of Alzheimer's disease (AD) and new disease-modifying treatment options that require early diagnosis, a new focus on predictive and preventive medicine arises. With progress in AD dementia risk estimation, guidelines for counseling, considering individual aspects of those affected, are becoming more important. As part of the trinational project PreTAD (The Predictive Turn in Alzheimer's Disease: Ethical, Clinical, Linguistic and Legal Aspects) anticipated effects of AD dementia risk estimation for first-degree relatives of people with AD dementia are evaluated.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
Center for Life Ethics, University of Bonn, Bonn, Germany.
Background: Projected Alzheimer's disease (AD) prevalence is expected to fourfold by 2050. With the escalating numbers of individuals affected by neurodegenerative diseases, including Parkinson's disease (PD) and AD, associated challenges encompass increased burdens on individuals and families, societal and political implications and economic impacts. Integrating patient and caregiver perspectives is essential to creating comprehensive, patient-centered care models that promote well-being and resilience in the face of degenerative neurological diseases such as AD.
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