The self, socials, and dementia

A diagnosis of dementia can have a hugely consequential effect on someone's sense of self. Neurological conditions, by their very nature, can impact how someone thinks, communicates, and engages in day-to-day activities. It makes sense, then, that their self-image might change too.

Writing in the journal Dementia, a team led by Bournemouth University's Catherine V. Talbot looks at one channel through which people with dementia can explore and navigate their shifting identities: social media. They found that such platforms can offer the opportunity for those with dementia to express themselves, increasing resilience and strengthening their self-image as it does so.

Participants were ten people with dementia, aged between 51 and 72 and based in the UK, Ireland, Canada, and Australia. First, they shared their social media profiles and selected posts they felt reflected their experiences and identities navigating dementia, before taking part in a conversational, semi-structured interview with researchers.

Through a thematic analysis, the team pulled out four key themes illustrating how people with dementia engage with social media, and use it as a tool to explore their identity:

●    'Self-disclosing dementia': considering whether to disclose or conceal a diagnosis on social media, and what exactly to share about the diagnosis. 
●    'Sustaining identity': how social media helped people maintain aspects of their pre-diagnosis identity.
●    'I'm more than my diagnosis': people expressing aspects of themselves beyond their dementia diagnosis.
●    'Platform identity affordances': how different platforms provide opportunities for self-expression, visibility, and association.

The first theme, self-disclosing dementia, looked at how people decided to disclose or conceal their dementia when online. Some felt motivated to hide their diagnosis, wanting to be seen as someone "still interested in life", while others found power in disclosing their experiences. This was especially powerful when engaging in dementia-focused groups, such as the Alzheimer's Society's Facebook page, where people felt they didn't have to "explain themselves" or what they were going through.

Some also found that talking about dementia was a way of educating others, particularly on the nuances of the condition: rather than portraying something "unrealistically positive", many wanted to show people the realities of experiencing dementia. Others spoke of online disclosure as being part of a "therapeutic self-expression" that helped them work through complex feelings about their diagnosis.

Next, participants spoke of the way social media provided a bridge between their pre- and post-diagnosis identities ("It's a continuation of who I once was… this is still me. And that's important to me."). Here, important elements of their past lives were able to be expressed, sometimes through hobbies, like photography, and sometimes through professionally developed skills such as education or advocacy. Socials also acted as a memory repository for participants, allowing them access to old photographs and giving them the ability to share, and recall, what was going on for them in the moment.

Linked to this was the theme of 'I'm more than my diagnosis', in which participants spoke of how social media could facilitate a "holistic and multifaceted sense of self" that was sometimes lost after a dementia diagnosis. Participants longed to be seen, and understand themselves, as complex people beyond a reductive idea of a 'dementia patient'.

Finally, participants spoke of the distinct features of social media that allowed them to express themselves and create opportunities for peer support and visibility. Text-based communication, for example, was useful for those experiencing difficulties with cognition or speech ("I can think and type quicker than I can speak"), and sharing photos and emojis let participants express themselves beyond words. Less positively, however, social media also exposed people with dementia to negative depictions of the condition, as well as aggressive or hostile responses from users who felt participants weren't expressing themselves "stereotypically".

With a small sample size, the study gives a limited look into the social media use of people with dementia; future research could dig deeper with more participants and more focus on intersecting parts of identity like race and gender or on social, rather than personal, identity. Yet, overall, it provides an unusual level of insight into how people with dementia use social media.

This could be useful knowledge for clinicians and family members, as well as those with dementia. If peer support, self-expression, and ease of communication can come from social media, efforts should be made to encourage patients to explore those channels and explore who they are — with and without dementia.

Read the paper in full:
Talbot, C. V., Roe, D., & Brunner, M. (2024). Navigating who I was and who I am online: How people with dementia use social media platforms to support identity. Dementia. https://doi.org/10.1177/14713012241292659

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