Alternative Narratives of Dementia: Healthcare Professionals Witnessing Blogs from People Living with Dementia

Background: People with dementia are increasingly becoming involved in advocacy to seek change in the ways that dementia is understood by individuals, organisations, and society. A growing number of studies have explored the experiences and motivations of people with dementia who advocate, however they have not explored the impact of advocacy within a healthcare context.

Aims: The aims were to explore the personal blogs of people with dementia who advocate, and to investigate the impact of these blogs on healthcare professionals who work alongside people with dementia.

Methods: Two people with dementia and four healthcare professionals took part. The narrative practice of outsider witnessing was used to connect the blog entries of each person with dementia to two healthcare professionals. Following this group meeting, healthcare professionals were also interviewed individually. A Dialogical Narrative Analysis was used to explore blog posts and the narratives that were elicited from healthcare professionals pertaining to the impact of these blog posts.

Analysis: Blog posts suggested that being diagnosed with dementia could initially be associated with loss. However, they also suggested that through a process of psychological acceptance and adaptation to symptoms, it was possible to continue living a full and meaningful life with dementia. Healthcare professionals reported that hearing blog entries from people with dementia enabled them to develop a greater
insight into the experience of dementia, challenged their preconceived ideas about dementia, and incentivised them to change their practice.

Conclusions: The findings provided initial support for the value of including advocacy by people with dementia (through their blog entries) into approaches to training and educating healthcare professionals. However, the effects of advocacy need to be explored further by studies which employ more rigorous methodologies. Moreover, there is a need for healthcare professionals and training providers to be open and receptive to involving people with dementia in service delivery.