Digital Narratives and Social Media in Dementia Care

Digital narratives encompass the stories and personal accounts of people living with dementia, their carers and advocates, shared via online platforms such as blogs, forums, social media and multimedia outlets. These narratives serve both expressive and instrumental functions: they foster peer connection, reduce stigma and inform professional practice. Social media facilitates real-time exchange of lived experience, offering asynchronous peer support, crowdsourced advice and opportunities for identity expression. Caregivers use platforms to seek practical guidance on daily care, respite and community resources, while people with dementia deploy storytelling and creative techniques to assert agency and combat stereotypes. The convergence of narrative theory and digital communication has spurred interdisciplinary research into how these mediated interactions influence well-being, social inclusion and policy. Advances in computational analysis—such as topic modelling and sentiment analysis—have unlocked new insights into the dominant themes, emotional valence and informational needs expressed online. Global initiatives now leverage digital stories to shape public awareness campaigns, design person-centred interventions and co-produce technology solutions. As demographic trends accelerate the prevalence of dementia worldwide, understanding the affordances and challenges of digital narratives and social media is central to innovating care pathways, improving quality of life and amplifying the voices of those most affected.

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Digital Narratives and Social Media in Dementia Care publication trend

The graph below shows the total number of articles in digital narratives and social media in dementia care across all publications each year (not limited to Nature Index journals).

Technical terms

Digital narrative: A personal account or story conveyed through digital media, combining text, imagery, audio or video to represent lived experience and meaning-making in online environments.

Topic modelling: A computational method that analyses large text corpora to detect clusters of co-occurring words, thereby revealing underlying themes or subjects without prior annotation.

Sentiment analysis: A technique that employs natural language processing to classify and quantify the emotional tone or polarity (positive, negative, neutral) of textual data.

References

1. ‘I found it the only place that spoke the same language’: a thematic analysis of messages posted to an online peer support discussion forum for people living with dementia. Age and Ageing (2023).
2. Social Media Discourse Related to Caregiving for Older Adults Living With Alzheimer Disease and Related Dementias: Computational and Qualitative Study. JMIR Aging (2024).
3. The use of digital technologies by people with mild-to-moderate dementia during the COVID-19 pandemic: A positive technology perspective. Dementia (2022).