Alzheimer's Society Innovation Hub

An online community centre to address isolation

One challenge for people living with dementia during the COVID crisis is that they are isolated and disconnected from their usual friends, family and carers. Many people living with dementia also struggle to use modern technologies and devices that the rest of the population are using to connect with each other online at this time.

Isolation and loneliness can be mitigated through video calls (realtime person-to-person contact). Video allows a deeper communication with family, friends and others than telephone conversation alone - especially true with non-verbal users with more advanced dementia. Activities can vary from personal calls between friends and relatives, to social group activities such as book clubs, exercise classes and support / discussion groups.

We at the UK Dementia Research Institute (UK DRI) Care Research and Technology centre, are keen to know if people living with dementia could benefit from a ‘virtual community centre’ during this COVID crisis. 

We think that this virtual community centre could include some of the following resources:
• lessons and help on how to set up tools to connect, including Skype, Facebook, Zoom
• facilitated group discussions, especially for carers, to share and support on aspects of care during this crisis.
• fun / social group activities online such as book readings, exercise classes, music listening groups.
• remote video monitoring between trusted individuals to allow carers more opportunity to get out for essential supplies, get rest, or look after themselves.

This could be supported by the provision of pre-configured devices to those in most need, including care homes to help people without devices connect (with support of technology providers).

At the moment, this a speculative idea on what we think could benefit people with dementia during this time. But we need to know what the community need and want. Please let us know what you think of this idea in the comments. 

edited on Apr 7, 2020 by Matthew Harrison
Matthew Harrison

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Chris Maddocks 3 months ago

I think that this is a brilliant idea and I for one would like to take part. I regularly speak to other people also living with dementia, they too have said that video calls (most use zoom) is great to meet with people. It helps with loneliness and a few of us have said that we are losing our speaking skills and having more word finding difficulties so video call will help with these things and many more. Thank you and look forward to see how this goes.Chris

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Matthew Harrison 3 months ago

Dear Chris, thank you for your comments. Its encouraging to hear that people are makign use of technologies such as Zoom and that you would be keen to take part. We are planning a vitrual Zoom workshop (probably on thursday) to explore these ideas, would you care to join it and help us shape the idea? - if so, perhaps you could contact me on matt@helixcentre.com

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Margaret Booth 3 months ago

This is certainly the right time to consider this as most people (even me) are looking sympathetically at videoconferencing platforms but I would be very wary of commercial apps as it is not certain how safe their data is, who has access to it and for what purpose. I would prefer an intranet like the NHS.net which is secure and seperate from the www.

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Matthew Harrison 3 months ago

Thank you Margaret. This is an interesting point you make. Trust in both the technologies and the people participating in activies online is something we need to consider carfefully, especially as the people we are aiming to serve may be vulnerable. I do think that some of the mainstream apps (e.g. Zoom, WhatsApp and Skype) are reasonable safe to use, if used carefully. We know they are used in government at the highest levels! However you do need to make sure you are using appropriate rules and settings. One of the nice things about Zoom, is that participants don't need to have a user account, which makes them a lot more anonymous to the outside world. A more closed intranet would be ideal, and something we may build towards if we can prove the concept and build momentum using exisiting tools. Do let me know if you would liek to get involved in shaping this concept.

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Chris Maddocks 3 months ago

Hi Matthew. It has been brought to my attention that there are security issues surrounding zoom. I was on a zoom call yesterday which was hacked and someone was putting really abusive messages in the chat box. This unnerved me somewhat and I would be interested to know if you can throw any light on this.Also a problem we have encountered with zoom calls when people are using it for the first time, it takes a long time to get set up and connected on the calls. This is particularly difficult when you only get 40 minutes free time on zoom calls. There have been instances when the whole meeting has been taken up with helping others access zoom and how to use it.I was recently on a video call named Jitsi, I believe that you can have unlimited time and number of people on these calls and it works in the same way as zoom. See link https://meet.jit.si/

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Margaret Booth 2 months ago

Jitsi does sound very interesting and apparently you can configure your own server to your own requirements or get their commercial arm to do it for you.

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Margaret Booth 3 months ago

I’ve no expertise in programming or system design so I’m not sure how useful I would be, but I could certainly play devils advocate if that helps. I think the significant phrase in your reply is - if used carefully- I don’t think we can assume that they always will be.

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Matthew Harrison 2 months ago

Hi Margaret, we are planning a couple of discssions about this idea next week. (probably using Zoom). We would love you to be devils's advocate, if you are willing. If this sounds ok to you, could you email me on matt@helixcentre.com of text / call me on 07515 963185 to I can give you more details.

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Jennifer Bute 3 months ago

Anything that can help in this direction is to be encouraged. In my experience a great deal is already being done in relation to this and there are many dementia support zoom meetings every day mostly international ones.
I know the Alzheimers Society ran a local project helping those living with dementia to use iPads that had been especially set up to be easy to navigate and it was a great success.
In the dementia inclusive village were I live they are making a special effort and have just been provided with 10 more iPads to the community and also providing training for any who would like to take up the opportunity.
I have been able to encourage a few residents to do Skype and we chat as we are in lockdown. I do not do phones so this form communication is so important.In fact just today and my second Skype call with a 92 years old here!

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Matthew Harrison 2 months ago

Hi Jennifer, thank you for this ecouragement. Its good to know there is movemt alreay happening. We are really interesting to explore how we can use these technolgies to help create a sense of community, reconnecting people who have been seperated by isolation, or creating new connections and friendships. We are plannign a couple of Zoom conversations next week to discuss and get feedback on the idea. If we can tempt you to join us that would be fantastic. If you are interested could you please email me on matt@helixcentre.com, or call or text me on 07515 963185 so I can give you more details. Hope to hear from you.

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Matthew Harrison 2 months ago

Please help us progress this idea...
We are looking to progress this idea, starting with some Zoom conversations to get feedback on how to take it forwards. If anyone on this community wants to input into these disucssions, please get in contact for more details. We are especially keen to include people with a dementia diagnosis and peope with experience of caring. I can help you join the zoom discussions by helping you access the software on a tablet, phone or computer beforehand. It is also possible to join the discussions by telephone (mobile or landline). Please get in touch - matt@helixcentre.com or 07515 963185

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Miriam Mills 2 months ago

Having online resources specifically for people with dementia and their carers all in one place would be very helpful - I am Dementia Support Worker and currently having to signpost people to a multitude of different online resources (activities etc), which takes quite a bit of time on my part (although there's some good list of resources out there) but also is probably a bit overwhelming for some of our clients who may not be that confident using the internet and having to navigate to lots of different websites. Knowing they could access community and activities all in one place would make things a lot simpler!

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IOTA 2 months ago

This is a great idea for those in the Early stages of dementia

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Chris Maddocks 2 months ago

I agree this is much needed and a great idea for those people living with dementia in the early stages

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