Navigating the complex ethical landscape of dementia research requires not only expertise but also sensitivity towards the unique challenges posed by this field. Developed by DemComm fellows at the Winter Residential School, the Dementia Research Ethics Resource is a comprehensive guide designed to support researchers in crafting responsible and effective dementia research.
This first-of-its-kind resource emerges from the collective insights and discussions of over 50 research fellows, drawing on extensive consultations and feedback across multiple stages of the research cycle—from idea generation to dissemination. It provides practical solutions to ethical dilemmas such as participant recruitment, consent, data management, and public engagement, ensuring that each research step respects and enhances the dignity of people living with dementia.
Crafted by Dr Elisabeth Grey, Dr Olivia Luijnenburg, Dr Rasa Mikelytė [1], and Dr Tomasina Oh, and supported by the National Institute of Health and Care Research and the Alzheimer’s Society [2], this resource offers invaluable guidelines, strategies, and tips to navigate the ethical complexities of dementia research. Whether you are assessing participant capacity, managing sensitive data, or engaging with patient groups, the Dementia Research Ethics Resource is your essential companion, ensuring that your research is ethical, respectful, and impactful.
Explore this resource and elevate your research practices in dementia studies. Join the Dem Comm Fellows in setting new standards in ethical research that truly respects and understands the needs of individuals and communities affected by dementia. For more information and to access the resource, visit DemComm Research Fellows [3].
Dementia Research Ethics Resource_20240517 [4]
Download the Report [4]
https://doi.org/10.17605/OSF.IO/3KHMD [5]