How can you protect your privacy, safety and wellbeing on social media when you have dementia?

Advice about staying safe on social media when you have dementia.

Social media offers amazing ways to connect with others and explore interests. 

But we also need to think about our privacy, safety and wellbeing online.

What can you do to stay safe and well if you have dementia and enjoy social media?

Privacy

For each platform you’re on (Instagram, Facebook etc), who else can see what you share on it?

Use your account settings to control this. For example, so only people you’ve added as contacts can see or comment on your posts.

If settings become complicated, is there a friend or relative who could help?

Some prefer a platform like our Dementia Support Forum, where support’s always available. Or a group chat on WhatsApp that only includes people you know.

Safety online when you have dementia

Many people are on social media for similar reasons as you. But not everyone’s honest about who they are or what they want.

On a public platform, it’s safer to only respond to a message from a person you don’t know if others can see it too.

If it looks like someone you already know, speak to them ‘in real life’ to make sure it really is them.

Keep passwords secure. If you need help accessing a social media account, is there a trusted friend or relative you can ask?

Wellbeing and social media

What you see on social media isn’t always true. Only follow and engage with accounts that you trust.

Spending time on social media can also feel like an emotional rollercoaster. Take a break if being on it doesn’t make you feel good.

Your tips for using social media safely

Jennifer Bute, who lives with dementia, shared advice from her experiences:

‘Your privacy can be invaded in two different ways. You can have people trying to chat you up, and you can have other people who are being very rude and unkind to you. 

‘The simplest thing is to block that person, and if you don’t know how to do that, get someone else to do it for you. There is no point at all in replying to that person in any way!

I find the best thing is to be involved with social media that belongs to an organisation. It is very easy to add comments under their umbrella, because they can deal with any fallout, as they do and have done for me.

‘As to what one shares on social media, one needs to think very carefully about one’s personal information because once it’s on social media it is everyone’s information.

‘I like to think that what is shared is for the benefit of others, not just to let off steam or to show off. We can help others by sharing advice or tips of how we’ve dealt with different situations and what we have learnt, even if it was the hard way!

‘My family may advise me if I ask them about something I’m going to post online, but otherwise they will not get involved. 

‘I would never share information about them or a friend or an acquaintance, because I have no right to do that online without their specific permission.’

Dementia Support Forum

Join our online community to share experiences with other people affected by dementia.

Find out more

Dementia together magazine

Dementia together magazine is for all Alzheimer’s Society supporters and anyone affected by the condition.
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Dementia together magazine is for all Alzheimer’s Society supporters and anyone affected by the condition.
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1 comment

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My wife was diagnosed with Alzheimer’s a couple of years ago. We are dealing with it, just. However, like most sufferers’ partners one can reflect on early indicators. In her case social media, and an addiction thereto played a big part. It started with innocuous games. The breakdown of cognition, filters, boundaries etc meant that her interaction with social media predators/nutters was unrecognised. To an extent that she was groomed and exploited. This added a level of complexity and sadness for the family. Short of controlling every move, which wasn’t deemed, at the time, necessary, there was no way to insulate her. There are some horrible people (men) out there. If in doubt best be thought of as controlling rather than allow the sados in. Happy to share these experiences if it adds to the social media conversation.
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