With social media platforms offering an easy way of finding out what is happening locally, it is easy to see the appeal for people living with dementia. 

In order for these platforms to be even more effective, new research supported by Join Dementia Research highlights the need for social media guidance specifically for carers of people living with dementia.

The study

A study team from Bournemouth University was keen to find out how common social media use was among people with dementia and what support was available to carers.

Researchers surveyed unpaid carers and asked about their experiences of looking after people with dementia who use social media. 

Over 200 people took part and almost half of them were recruited through Join Dementia Research. 

The study was led by Bournemouth University with funding and support from the National Institute for Health and Care Research (NIHR) and the British Academy. It found that around a quarter of respondents cared for someone who used social media, with Facebook the most commonly used platform.

Benefits of using social media

The survey showed that social media can be beneficial for people with dementia as it allows them to contact old friends, remain present in family members’ lives and access information relevant to their local communities through Facebook groups. 

Looking through photographs can also be of benefit as they can trigger memories, start conversations with their friends and family and help them feel positive emotions. 

Supporting people with dementia to use social media

However, the study found many people with dementia had trouble using social media. Problems included difficulty navigating apps when they are updated, forgetting login information and getting locked out of accounts and more concerningly, reading and believing false news stories. 

The type of support carers typically provide includes help to set up profiles, authorising friend requests, implementing privacy settings and helping to check notifications and messages.

However, most carers reported that they did not know how to access training and resources on how best to support people with dementia to use social media. 

The need for social media guidance

The study has highlighted how more guidance is needed on supporting people with dementia using social media to ensure that they can navigate it easily and avoid false and harmful information. 

The research team now aims to collaborate closely with people with dementia and their carers to create training and resources that promote online safety and harness the potential of social media for meaningful connection and engagement. 

They are also looking to partner with technology developers to create online spaces that champion the safety and inclusivity of people living with dementia.

The paper ‘Unpaid carers’ experiences of supporting people with dementia to use social media’ was published in Aging and Mental Health. 

The research was conducted in collaboration with University of Tennessee-Knoxville, University of Liverpool, University of Bradford, and the University of Birmingham.

To find out if you are eligible to take part in a dementia study, sign in to your Join Dementia Research account or, if you are not already registered, sign up today.