Building a Community for People With Dementia

Most of the members of the Alzheimer’s Society’s Talking Point community don’t have dementia. But 4% do. And that creates a unique challenge when it comes to designing an online community.

Features that we might take for granted, like saved drafts, take on a whole new meaning when you are experiencing short term memory loss. Community manager Serena Snoad joins the show to talk about building a welcoming community for people with dementia, plus:

  • How memory loss impacts how they moderate
  • Debriefing sessions that Serena offers to staff members who have handled a stressful issue
  • Why XenForo was the right software choice for them, in their recent relaunch

Disclosure: Serena has kindly supported our show’s Patreon campaign. I’ve known her for years, and it has nothing to do with her being a guest on the show, but I felt it was worth mentioning.

Our Podcast is Made Possible By…

If you enjoy our show, please know that it’s only possible with the generous support of our sponsor: Higher Logic.
Higher Logic

Big Quotes

“If somebody says they have dementia, or if they’re a carer, we would then, as a team, be looking at the posts and the activity of members, particularly newer members, to see if they need any additional support. For somebody with dementia, if we feel that they’re using the community in a way that may not be very helpful, we’re not sure whether or not they’re understanding the terms and conditions or their behavior. We will take a much gentler approach with moderation. Generally, we’ll do that also for people who are undergoing quite a lot of emotional distress. We would also moderate in a slightly different way, in a way that’s designed to encourage them to post in a different way. So yes, it’s quite a delicate balance, and that’s one of the reasons why my staff and volunteers have training in emotional support as well as training in technical support. That’s been important for us.” -@serenastweeting

“If you Google a health condition, it’s a horrible mess out there. To be able to get trusted information about what you need, and to be able to find people who know what they’re talking about, I think it’s really important to be in those [digital] spaces.” -@serenastweeting

About Serena Snoad

Serena Snoad is an online community manager, running the digital service at the Alzheimer’s Society, a charity in the UK. She lives and works in London and manages Talking Point, the Alzheimer’s Society’s 14 year old online community. Prior to this, Serena worked in social media management and communications for other charities. She holds a qualification in public relations from the CIPR.

Related Links

Transcript

Your Thoughts

If you have any thoughts on this episode that you’d like to share, please leave me a comment, send me an email or a tweet. If you enjoy the show, we would be so grateful if you spread the word and supported Community Signal on Patreon.

2 comments

Leave a Reply

Your email address will not be published. Required fields are marked *