An Exploration of the Training Needs for End-of-Life Doulas in Alzheimer's Disease and Related Dementias

The end-of-life doula movement originated from the birth doula movement during the 21st century to serve as companions, mentors, and advocates for the dying. The end-of-life doula role is relatively new, and there are no standardized practices for overseeing training programs. This project sought to describe the experience of trained end-of-life doulas working with persons living with dementia and to identify the educational need to improve dementia training. This project used a qualitative descriptive design. Eight doulas were recruited through a purposive sampling method and completed in-depth interviews. These interviews were then analyzed in two cycles of coding: descriptive and pattern coding. Five themes were identified: three describing doula experiences (working with people living with dementia, impact on families, techniques for working with people living with dementia) and two describing educational needs relating to ADRD (doula attributes, what should be taught to doulas). Participants described the experience of working with people living with dementia as unique when compared to other disease processes. They emphasized the lack of and need for training in caring for persons living with dementia at end-of-life. Results were mapped to the principles of adult learning theory, and recommendations were made for future efforts to improve dementia training for end-of-life doulas.