Unpaid carers’ experiences of supporting people with dementia to use social media: Research in brief

Dementia affects approximately 55 million people globally and is predicted to rise to 150 million by 2050 (GBD 2019 Dementia Forecasting Collaborators, 2022). Those affected by dementia report profound difficulties, including depression, loneliness and shifts in identity following diagnosis (e.g. Górska et al., 2018; Ward et al., 2022).

Emerging evidence indicates a growing number of people with dementia are seeking support via social media, including Facebook (Craig & Strivens, 2016), Twitter (Talbot et al., 2021), and online forums (Talbot & Coulson, 2023). However, little is known about the perspectives of unpaid carers, who may have unique experiences of supporting social media usage.

To address this gap, we surveyed 234 unpaid carers about their attitudes towards social media and experiences of supporting its usage (see Talbot et al., 2024). The survey included closed and open-ended questions about logistics of support, concerns, motivations, and observed changes over time.

Among the 234 participating carers, 55 (23.5 per cent) reported that the person they cared for used social media. Facebook was the most commonly used platform (94.5 per cent; n=52), followed by Twitter (10.9 per cent; n=6), Instagram (7.27 per cent; n=4), TikTok (5.45 per cent; n=3), and online forums (3.64 per cent; n=2).

Within this sub-sample, attitudes towards social media training were mixed. Most carers reported not knowing where to access training and resources on how to support people with dementia to use social media (58.2 per cent; n=32) and more than half the sample (58.2 per cent, n=32) agreed they would like to access training and resources on how to support people with dementia to use social media.

Our thematic analysis indicated that carers often helped people with dementia navigate social media, providing ongoing guidance and support with various tasks such as interface navigation, setting up accounts, resetting passwords, and purchasing items via Facebook Marketplace. Carers felt supporting social media usage was a key aspect of care, fulfilling their role as a facilitator of social connections and cognitive stimulation.

Participants also recognised the vulnerability of people with dementia to online scams and misinformation so employed safeguarding measures, such as vetting friend requests, checking messages, and managing privacy settings. However, they highlighted the substantial work involved in supporting social media usage – particularly as dementia progressed – which required significant time, energy, and patience. Therefore, carers struck a delicate balance between reaping the benefits of social media and ensuring online safety, while also managing the demands of care.

Our research coincides with the increasing digitalisation of dementia care (Giebel, 2023) and ongoing discussions about the Online Safety Bill. As social media remains an integral part of modern society, future efforts should focus on tailored educational programmes for people with dementia and their carers to support safe and effective social media usage.

While enhancing digital literacy is crucial, we also urge social media platforms to pro-actively develop innovative solutions that prioritise the safety and wellbeing of this demographic. As older adults continue to embrace social media, carers, support organisations, and policymakers must adapt and work with technology developers to ensure safe and supportive online experiences.

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Primary paper:

Talbot, C.V., Roe, D., Anderson, J.G., Donnellan, W.J., Wilson, S.A., & O'Dwyer, S.T. (2024). Unpaid carers' experiences of supporting people with dementia to use social media. Aging and Mental Health. http://dx.doi.org/10.1080/13607863.2024.2301725 

Other references:

Craig, D., & Strivens, E. (2016). Facing the times: 'A young onset dementia support group: Facebook style'. Australasian Journal on Ageing, 35(1), 48-53. https://doi.org/10.1111/ajag.12264  

GBD 2019 Dementia Forecasting Collaborators. (2022). 'Estimation of the global prevalence of dementia in 2019 and forecasted prevalence in 2050: an analysis for the global burden of disease study 2019'. The Lancet Public Health, 7(2), E105-E125. https://doi.org/10.1002/trc2.12200

Giebel, C., Hanna, K., Watson, J., Faulkner, T., O'Connell, L., Smith, S., & Donnellan, W. J. (2023). 'A systematic review on inequalities in accessing and using community-based social care in dementia'. International Psychogeriatrics, 1-24. https://doi.org/10.1017/S104161022300042X 

Górska, S., Forsyth, K., & Maciver, D. (2018). 'Living with dementia: a meta-synthesis of qualitative research on the lived experience'. The Gerontologist, 58(3), e180-e196. https://doi.org/10.1093/geront/gnw195

Talbot, C.V. & Coulson, N.S. (2023). '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, 52 (1), 330. https://doi.org/10.1093/ageing/afac330

Talbot, C.V., O'Dwyer, S.T., Clare, L. and Heaton, J., 2021. 'The use of Twitter by people with young-onset dementia: A qualitative analysis of narratives and identity formation in the age of social media'. Dementia, 20 (7), 2542-2557. https://doi.org/10.1177/14713012211002410

Ward, R., Rummery, K., Odzakovic, E., Manji, K., Kullberg, A., Keady, J., Clark, A., & Campbell, S. (2022). 'Beyond the shrinking world: dementia, localisation and neighbourhood'. Ageing & Society, 42(12), 2892-2913. https://doi.org/10.1017/S0144686X21000350