Building a Community for People With Dementia

[00:00:04] Speaker: You’re listening to Community Signal, the podcast for online community professionals. Sponsored by Higher Logic, the community platform for community managers. Tweet with @communitysignal as you listen. Here’s your host, Patrick O’Keefe.

[00:00:24] Patrick O’Keefe: Hello and thank you for being a part of Community Signal. Without listeners and people who connect around this show, I don’t think I would be doing this. I like talking about community and I enjoy chatting with other professionals and yes, as I’ve said before, it’s self-care for me but without listeners, I’m not really sure there’s much of a point, so thank you.

Our guest this week is Serena Snoad. We’re going to talk about the accessibility considerations of managing a community where some of your members have dementia and how charities are tapping into user-led service delivery to expand their online support offerings. If you enjoy the show and would like to help guide the subjects I discuss with guests, check out our Patreon at communitysignal.com/innercircle, and join listeners like Luke Zimmer, Joseph Ranallo and Dave Gertler.

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 Alzheimers 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.

As a point of disclosure, Serena is a supporter of the show’s Patreon. This is the first time that I have had a guest who that was true of, so I wanted to mention it. I’ve known Serena for a long time, well before this show existed and I’m going to treat her like any other guest. Serena, welcome to the program.

[00:01:43] Serena Snoad: Thank you for having me, Patrick.

[00:01:45] Patrick O’Keefe: It’s a pleasure. It’s great to be able to chat with you after following each other online for so long. Thank you for being a supporter of the podcast, I really appreciate it.

[00:01:53] Serena Snoad: It’s really great. I think I find it really helpful to have a podcast that’s specifically about online community management so it’s been a real pleasure to listen.

[00:02:01] Patrick O’Keefe: Yes, as I said at the top of this show, I think, without listeners, I wouldn’t do this show. I enjoy talking about it and I enjoy talking with the people that I bring on like yourself but without listeners and people that I know value this show, I don’t know [laughs] I don’t know if there’s a point in doing it. It is self-care for me but it’s good to have people listening that actually find value in it. I appreciate that.

Different from other types of diseases, you’ve worked with other charities, other organizations, serving other causes and certainly you’re familiar with the larger charitable space and all the sorts of organizations out there serving all sorts of people. Different from other types of diseases, what are the unique challenges of managing a community where some of your members have dementia?

[00:02:45] Serena Snoad: That’s a really interesting question and it’s something that I think we’ve been thinking about for quite some time because our user survey that tells us that we have about 4% of our users who have dementia. They are a minority but we do try and make it any kind of development, any sorts of improvements we make or any process that we have, we try and bear in mind what people with dementia may struggle with and what they may need.

There were things that happened more by accident than by design that have actually turned out to be really helpful. Things like a save draft feature on content so that if someone who has difficulties with memory may be able to see what it was they were going to say can come back to a discussion and to see that there, that’s been helpful. Also to think that people might want some support with finding previous content or that they might want support for them. If things are difficult for them, they might need somebody to support them more on a one to one basis.

For us it’s about thinking about if someone has dementia and they appear to be having a difficult time, us being more proactive as an organization and stepping in and making sure that person has the support they need, it’s just really useful.

[00:04:09] Patrick O’Keefe: It’s such an interesting kind of challenge, 4% of your audience, so 96% isn’t but it’s also why you exist to a large part is, to serve this exact audience. The way you spoke about it there, it made me think about how we talk about accessibility. Usually, we do that in the context of people who are visually impaired or hearing impaired or they can’t see the screen, they can’t listen to the video.

There’s a level of accessibility here that you have to think about when your dealing with a portion of your audience who you know has memory issues in the ways you can bake that into your platform or your software.

[00:04:48] Serena Snoad: Absolutely. I think it’s about considering the impact that a problem with cognition or a problem with memory might have on how someone would be able to find information or use a website, as an organization which started to do some more formal thinking about how dementia can impact on how people use websites in particular. Something we found most interesting is to consider how people with dementia use our own resources, our own websites and services.

Something I would particularly love to do in the future is to have a user testing project just for people with dementia. It’s really quite tricky to get people for a user project in the first place so it will be more of a challenge to do that but I’d be really excited to do it because I think It’d be really worthwhile. We’ll probably learn even at that stage quite a lot that we probably don’t already know about how people with dementia use websites.

[00:05:44] Patrick O’Keefe: We all center ourselves in our own little universes obviously but I had never thought about the save draft feature in that context which makes a ton of sense. For most people, that’s just a feature where we save our work and we’re glad it’s there when our internet goes down and WordPress; our browser crashes and we can go back to WordPress and see that our post is still there that we just spent five hours on.

But in this context it’s literally that they may come back tomorrow and not remember what they were there for and having that text there and maybe even having a prompt that says, “Would you like to continue what you started?” More or less and reminding them that it’s there could be a feature that either makes or breaks their experience and allows them to continue to be a member.

[00:06:27] Serena Snoad: Yes, that’s really true and another thing to think about is how existing accessibility tools can work with websites and something we’ve been looking at doing is completing another accessibility review. We completed one a couple of years ago but we’ve since switched platforms so I think it would be really useful for us to think about existing tools that are quite commonly used, then to think about whether they’re working well on the site or whether there are ways that we can maybe improve things. So it’s definitely something else on my list to consider.

[00:06:59] Patrick O’Keefe: On your backend or with your team, is there a way that you identify people privately, like, they might make a post and say, “I have dementia or I have Alzheimer’s or I’m suffering from memory loss due to Parkinson’s.” Or whatever it may be. They may designate themselves as someone who has this but is there anything else that you do when they register, do you ask if they are someone who cares for someone or if it’s a family member or if it’s them, or do you have any way of knowing so that you can actually– I don’t know, in a way maybe adjust your approach and how you for example moderate because someone may not remember the guidelines that you just told them about recently. They have to have a different level of care. Do you have anything like that in place?

[00:07:44] Serena Snoad: Yes, we do actually. When we ask people to register we do ask people to give us a reason for joining. We leave that as a free text field because the reasons why somebody might join Talking Point could vary quite a lot so they might not actually identify as a carer for example. That’s a label that a lot of people don’t like having. Particularly if they’re a husband, or a wife, or a family member, they wouldn’t see themselves as a traditional carer necessarily so we don’t have a lot of drop-down options there, we let it be free text. What that means is that when we have somebody join we then have a list of the newest members and we’re then able to see.

If somebody says they have dementia or if they’re a carer, we would then, as a team, and that’s the staff and the volunteers, we would 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 for example if we do 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 we’re not sure whether or not they’re understanding 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.

[00:09:21] Patrick O’Keefe: Yes, that’s really great. That’s great that you have the resources to do that because it’s really important to adjust the approach to someone. I guess on the other hand it’s, I think, the right way, I don’t want to say the right way very often in community because there’s a lot of right ways. But the right way for me to approach guideline violations is to treat it like an educational opportunity. So in your case, you just might have members who you have to assume are at the base level of education each time you reach out. Where yes you may have told them that a while back but don’t assume knowledge. Which is in general, not the worst approach when dealing with community members is not to assume knowledge.

[00:10:00] Serena Snoad: Absolutely, I’d agree with that. I think also when you want somebody to use your community and to find it useful, for some people, they may not have memorized your terms and conditions. In fact, I’d be very surprised if anybody has memorized the terms and conditions of any website.

[laughter]

[00:10:17] Patrick O’Keefe: Besides us, of course, right?

[laughter]

[00:10:19] Serena Snoad: Exactly. The ones who wrote them in the first place. I think it’s just about giving people that opportunity to see why that behavior might not be helpful. I think the way you do it would be a way where you would try and encourage them to continue to use the site. As you know, it’s very rare when you want to remove somebody from a community. It’s only when their participation has become so unhelpful, it’s actually disrupting either the nature of the site, or other people’s experiences.

[00:10:47] Patrick O’Keefe: That’s an interesting thought. We often talk about, on this show, how mainstream communities, say the football team — You might have a lot of intense discussion there, and maybe a fair number of people get banned, right? Especially if you want people to talk nicely [chuckles] to each other about sports.

But if you go to a professional community, like the kinds I’m managing now in my day job at CommunityCo, where it’s like business networking, you tend to ban people less, because they tend to just, by the nature of the community, be on better behavior. They are there to be professional, to network, and they want their fellow industry professionals to think well of them.

In your experience, I guess as a user in — I don’t know if you’ve had experience managing more generic mainstream communities, but it seems like for a community like this that deals with a cause, people will tend to be on their better behavior, and be supportive, except for people who are dealing with extreme trauma or stress. It just seems like the type of community where, to your point, people would probably get banned quite a bit less.

[00:11:46] Serena Snoad: That’s possibly true. I previously managed Facebook and Twitter spaces, so this was my first experience in managing a forum. But I can remember back in the days when I was looking after Facebook and Twitter that you would have, in some cases, with certain discussions, a lot more behavior that’s unhelpful. I think for Talking Point, I suppose it’s changed as the community has grown. That’s the thing that’s changed first of all.

When the community was smaller, back when the community had, say about 20,000, 30,000 members in total, there were more active members who felt they had a right to challenge moderation. As the community has grown, those members have moved on for various reasons, including banning. As the community’s grown, I suppose it’s the ethos of the community has also developed.

I think it’s also about the culture. If the community is a place where it’s about support, it’s a supportive space, and it’s a service, then it’s seen as a space where people go to give and receive support. So, in that way, people know the right way of behaving, they learn it from others. It’s the idea of the most powerful way to learn positive behavior, is to give and receive it yourself.

I think that’s part of the reason why people don’t misbehave as much, I suppose. It’s also to do with the charity’s reputation as well. That’s one factor in addition to that. I think definitely what we’ve seen is people come onto Talking Point and they get such great support, they continue behaving in a really positive way, and it’s a really nice ricochet effect. That’s really helped in terms of moderation and how we support people as well.

[00:13:34] Patrick O’Keefe: Let’s pause and talk briefly about our great sponsor, Higher Logic.

Higher Logic is the community platform for community managers with over 25 million engaged users in more than 200,000 communities. Organizations worldwide use Higher Logic to bring like-minded people together by giving their community a home where they can meet, share ideas and stay connected. The platform’s granular permissions and powerful tools, including automated workflows and consolidated email digests, empower users to create their own interest-based communities, schedule and manage events, and participate in volunteer and mentoring programs. Tap into the power your community can generate for you. Higher Logic, all together.

You used a term in your pre-show questionnaire that I wanted to explore a little bit. “User-led service delivery.” I guess specifically tied to the delivery of public health services. You labeled this a newer issue. Tell me about it.

[00:14:28] Serena Snoad: Okay. There are quite a lot of facets to the idea of user-led service delivery. For Talking Point, it started when it began. Talking Point actually came about because somebody who’s working in IT, a guy called Craig Clarke. His dad had dementia, and there wasn’t anywhere to talk about dementia online. So he came to the society, Alzheimer’s Society, and he said, “I’d like to set up an online community.” Nada, who was the website manager at the time, said, “Well, let’s set it up together.” Until when we actually started because the service user wanted it and identified the need. From the very beginning, it was a volunteer that was leading the development of the service. Because it came from that point I think that’s why it’s been so central to the way Talking Point has been delivered going forward.

We started with volunteer moderators and the staff support. It was someone who was supporting as part of their role. It wasn’t their main focus. The key day to day operation of the service at the time was delivered by volunteers. Because they knew their past experience is of dementia, that was what informed the way the service developed.

Going forward, we’ve always had a very active and highly engaged team of volunteers. When we’ve been delivering the service, we’ve always delivered it in mind what they need, I suppose. I think from my point of view, that’s been a really important part of that user-led service delivery idea. I figured out a couple of other things, how regularly you are asking new users what they need and how regularly are you taking that feedback on board and what are you doing with it?

For some people they take feedback on board and they may think, “That’s nice.” And they put in one side and they don’t do anything. But if you take user feedback and you use that to inform the way you develop and a way you improve, actually, it’s part of that cycle. The user need and what users tell you is as much a part of how you will improve or how you will develop things as much as what staff might think or what the organization might think.

[00:16:38] Patrick O’Keefe: You have a couple of volunteer teams and one of those teams that in addition to other duties is focused on acting as “early weather warning,” inspiring people who may be having a tough time in the community. What does that process look like?

[00:16:52] Serena Snoad: Yes, we have two volunteer teams on Talking Point, in addition to volunteer moderators, we also have volunteer hosts. Their role is about meeting, greeting newer members, signposting to resources and also helping to flag issues. That’s a really key early part of the moderation process where you’re supporting a discussion or you are supporting a service user where you think we may even need to moderate or step in or whether we may need to offer additional support. We would encourage our hosts to report issues or to report profiles and they are some of our most prolific reporters and it’s really useful.

But we also ask our hosts to flag anything where we feel someone might be vulnerable or having a tricky time. That’s where our hosts who do things like checking newer member profiles or checking discussions and they would then let us know if they think someone’s talking about a really difficult situation. We actually developed a process that’s called “RAISE” and it’s the idea of reporting and then acknowledging what that person’s experiencing. Then if need be, the host would then be moving on to signposting.

It may be that someone is talking about suicide or they’re talking about really difficult experiences in which case they then signpost to the Helpline or to Samaritans or to another organization. If need be they’d move to E which is escalate and they then escalate up to staff. That’d be when we would use a safeguarding process. If you work on a helpline for example or if you work in a particular local service, you have a safeguarding process. You would be identifying and escalating issues if you think someone needs help, if you think they may need to be assessed by social services or they may need to get additional support from local authorities.

That’s how the volunteers feed into a safeguarding process and from then we’re then able to make sure people get the support that they need.

[00:19:00] Patrick O’Keefe: For members of your team who have handled a difficult or stressful issue, you are available for debriefs. Talk about that a little bit. How does that work? What is a debrief and what kind of situation for example would you offer one?

[00:19:12] Serena Snoad: That’s a really useful thing to think about how you debrief with remote volunteers particularly when some of the things that people are going through can be really difficult. We have the volunteer only areas of the community where people can discuss if they found something difficult for every volunteer is also managed by a member of staff. They then have the ability to contact that staff member and ask for a call or ask to discuss an issue. That’s something that we offer on top of more regular catch ups with our volunteers.

Something else that we do, we’ve only just recently started doing, is offering access to a counselor. We have access to a clinical counselor where we can basically book a session with that person. He’s got 20 years experience in working with helplines and in counseling. He works with a number of national charities including us and now my volunteers can contact him and get support from him as well. I think that way we are able to offer quite a lot of support and that makes me feel a lot better because if I’m asking my volunteers to give hours of their time, they could be working on their own, they might not necessarily know what to do. I think being able to at least go through what you did with somebody and ask, “Was that okay?” Or say, “I found this really difficult and I just want to talk about it” I think it’s really useful that you give that option.

[00:20:40] Patrick O’Keefe: Yes, it is great that you have that to offer. I know that I’ve spoken with different professionals about remote working especially the idea that it can be tough to advocate for resources for that mental health to deal with. In their case, moderation where they might see a ton of content, a lot of disturbing content and having a difficulty advocating for that. That’s really great.

You recently launched a new iteration of Talking Point which is powered by XenForo. Why did you choose XenForo?

[00:21:11] Serena Snoad: That’s a very good question. Talking Point was previously on vBulletin 4.2. I had been watching with increasing horror the number of news stories about vBulletin being hacked to left, right and center and various databases being sold on dark web. People started to get genuinely quite worried including the fact that the developments support that vBulletin was offering was looking like that was not going to be a long term thing. I thought, bearing in mind I’m running a national service for a charity where reputation is really important and we’re running services, it’s much better to get a jump on it now than to wait until vBulletin has no more patches and support available.

We then were looking at various products. We’re a PHP based site with underlying SQL database. When you are thinking about what will work and who’s migrating to where, you’re looking at what previous individuals and organizations have done. We then realized at that point in the project we had a choice between open source, propriety and software as a service. We were courted by one of the biggest software service companies but would have been quite a lot of money every year. If you use their services, over a half of my own salary budget.

I thought that probably wouldn’t be a good idea. We decided to go with XenForo. In terms of the feature set and how comparable it is with vBulletin and in terms of what our services we used to we thought that was pretty much the best option. Also in terms of the number of redirection scripts and migration scripts are in place as well as the number of people who handle VB to XenForo for migrations.

We did look at Discourse for example but at the time it was still in beta I think there wasn’t much development support available from what we could see and in terms of what feature flexibility they had at the time or in the sort of feature sets that we would have needed so I think I’m really happy with the decision we made.

[00:23:19] Patrick O’Keefe: I’ve spent some time looking at the community software market and when I listed out all the features that I would need because I have an older legacy community that I want to upgrade to something current generation at some point, it’s a really big project. [chuckles] I took my power to it. It’s going to happen. The one that got closest out of the software platforms I reviewed then was XenForo. It seemed to be the most compatible with all that I was looking for, had the most options for additional features customization. A lot of the reasons I choose software platforms are often to do with the community around them. That’s the reason I chose phpBB years ago and used it was because phpBB had an outstanding customization community, people who are making hacks and templates for the platform. It was massive and there was no other community like it at the time that I chose phpBB.

I don’t know if XenForo in on the same position of strength as phpBB was 15 years ago but they seem to have a really good community around the platform as compared to other software options, actively working to create new things create new features and styles and themes and basically extend the platform further.

[00:24:29] Serena Snoad: Absolutely, and that was really important consideration for us. Back in, I think 2015 we needed to upgrade to a version of vBulletin that was still being supported, so we upgraded our staging site and it turned the theme into something horrific and we then realized that we needed to re-theme before we deploy it on live. trying to find somebody in 2015 who would be able to develop a custom theme for us in VB4 was really difficult. There were only a couple of people who were prepared to quote. In the end, later only with developing a mobile theme for vBulletin. Again, as you know, it’s not built for mobile, they don’t have responsive themes as standard, so you’re dealing with a situation where you’ve got to write something adaptive. We then have to try and find someone who could provide a mobile theme as well as an update to the desktop. Then, the organization, Alzheimer’s Society re-branded in January this year. Again that meant a new theme for the community. We were trying to find people who were able to quote for that work and it was really difficult.

For XenForo you’ve got a good two or three theme developers that are really great and in terms of developers who are providing add-ons, there are at least eight or nine people who are producing quite a lof of really good stuff.

[00:25:52] Patrick O’Keefe: You mentioned the software, the service company, no I don’t need you to name them that doesn’t matter but cost-wise, what they were offering and what it cost you to pay for XenForo which was like $200 or whatever, and then maintain it. How much of a cost savings was XenForo and also paying to host and maintain XenForo, over a year let’s say, versus what the software as a service platform is offering. I don’t even need a dollar amount just percentage, like was it half the cost, 75% of the cost.

[00:26:20] Serena Snoad: No, I’m happy to tell you Patrick. So it was looking like it would be almost 50,000 pounds per year to use software as a service company, although they were offering everything so custom themes, access to support round the clock, ability to request features, obviously hosting and support with other aspects of the management of software. But bearing in mind for XenForo as you say it’s 200 pounds a year for the license. If you’re hosting, again it depends on the size of the community, but we have a hosting company called Nimbus who are fantastic. We’ve worked with them for years. They offer us a very good deal in terms of how much it costs to host not only our live site but our staging site as well and also to provide backups and also to be on hand for any particular kind of server errors or any kind of key server related issues. It’s been really, really great value for money.

Even when we’re bearing in mind that with rebuilding a site you’ve got the migration costs, that was less than 5,000 pounds. When you’re thinking about the design costs again when you’re dealing with companies you can get quoted anything from 10,000 pounds down to 200 pounds, it would depend what you want from what service you would like from that individual.

For us, we went from a possible ballpark figure of 50,000 pounds a year to the year on year technical management the Talking Point being around 10,000 pounds. But then if you factor on a little bit of development work on top of that it’s been a little bit more but that’s something I’m hoping not to migrate every year, if so. [chuckles]

[00:28:02] Patrick O’Keefe: More than half safely. [chuckles] It sounds about 70% less so yes, that’s substantial for sure. In 2008, you were working at a different organization focused on leukemia and lymphoma research and you told me before the show that when getting the social media accounts and digital activities off the ground you sought forgiveness and not permission, how so?

[00:28:27] Serena Snoad: That was definitely what we did. Back in 2008, I’ve been working digital comms for about 10 years, there were a lot of charities that were very active in social media so there were a number of the larger charities that were leading the field at the time. That would include people like the Dogs Trust for example, people like Macmillan, people like Cancer Research and NSPCC. We were a smaller cancer charity, we saw that there was a lot happening on Facebook and on Twitter. I think Twitter was only just starting to gain traction in London in about 2008, actually, it was only about two years old.

We decided, we are just going to go ahead and set it up. It was me and the website manager at the time, Jonathan Satchell, who now lives in Denmark. We just thought let’s just go for it, let’s set it up, let’s land grab those brand names now and see what we can do in terms of developing online space and developing the networks. I think was important for us to know that people were already out there online talking about blood cancers. They are talking talking about leukemia and what it’s like to go through that.

For us to not be in those conversations and for us to not have a presence just for a missed opportunity and so it was at that point in time where we just thought, “Let’s innovate let’s go for it, let’s see where we can take this.” I think we were very fortunate to be able to develop that in a really interesting way.

[00:29:52] Patrick O’Keefe: So it worked out the cops weren’t called, you [chuckles] – it was successful.

[00:29:57] Serena Snoad: We didn’t get hauled into office and told off, that’s for sure. They actually ended up, after about a year, people were really excited about what social media could do in terms of supporting fundraising, in terms of getting people the right information that they needed you know what it’s like. 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 spaces.

[00:30:26] Patrick O’Keefe: Serena, thank you so much for coming on the program. It’s been a lot of fun to chat with you.

[00:30:30] Serena Snoad: Thank you for having me it’s been really lovely to talk to you too Patrick.

[00:30:34] Patrick O’Keefe: We have been talking with Serena Snoad, online community manager for the Alzheimer’s Society’s Talking Point community. Which can be found at forum.alzheimers.org.uk. For more on Serena, visit her Linkedin at linkedin.com/in/serenasnoad. For the transcript from this episode plus highlights and links that we mentioned please visit communitysignal.com. Community signal is produced by Karn Broad. Have a great November!