Podcast featuring guides for dementia-related issues received favorably

Key takeaways:

• Those with dementia and their caregivers provided feedback on a dementia-related podcast.
• An interactive online version of the guides is expected to become available in the future.

PHILADELPHIA — A podcast that offers guidance for living with dementia as well as a space for those with lived experience to share their stories has received favorable reviews, according to a poster.

“We actually have a subway map of different themes along the dementia journey, and we created learning guides where we took different points along those themes and pulled excerpts from the podcasts to help demonstrate,” Kathy Hickman, senior director of education and knowledge translation at the Alzheimer Society of Ontario, told Healio at the Alzheimer's Association International Conference.

“These are the actual voices of people’s lived experience.”

The Alzheimer Society partnered with the Centre for Education in Research in Aging and Health at Lakehead University in Ontario to produce Dementia Dialogue, a podcast dedicated to furthering education and creating dialogue around the issues that arise from a dementia diagnosis for patients and caregivers.

This partnership sought to examine whether the learning guides contained within the podcasts increased understanding, maximized the potential to decrease stigma and how to best utilize the guides to assist those with lived experience.

A total of 22 individuals (those with lived experience, n = 12; Alzheimer Society educator, n = 8; health care provider, n = 1; volunteer, n = 1) were asked to test and provide feedback on either of the two learning guides that best fit their target audience, then respond to a survey with an option for an interview about their experience.

Results showed that, among the quantitative responses, 87% believed the guides would decrease stigma for those living with dementia, 77% of those living with dementia or who were a caregiver thought the guides accurately reflected lived experience and 87% of respondents would recommend the guides to others.

Qualitative answer analysis yielded positive feedback regarding the relation of unique experiences of the dementia journey; insights into the lives of those whom dementia affects; learning of new skills related to caregiving; balance between positive and negative aspects of the dementia experience as well as ease of ability for users to compare their journeys with others.

Respondents suggested that more information be provided on how elements of diversity may impact the dementia journey and that any technical improvements to the analog version of the guides remain simple for better functionality.

Future versions of the guides are likely to include an electronic element.

“Because this [podcast] was a very analog version, [we asked] would people be interested in an e-learning version and the answer was a resounding yes,” Hickman told Healio.