​

 

 

 

During the covid-19 pandemic, a group of course facilitators met virtually with Prof Rik Cheston, Emily Dodd and Dr Ann Marshall to consider how LivDem can be provided online. The meeting identified a number of the challenges and possible opportunities for developing an online version of LivDem. This page frames these discussions in terms of good practice guidelines that can be considered locally when setting up and delivering such an online support group for people living with dementia. These guidelines should be considered alongside and in addition to the existing resources and the LivDem manual when developing LivDem for online delivery. We would also strongly recommend that facilitators consult the INDUCT best practice guidelines for technological and digital interventions with people with dementia (https://www.dementiainduct.eu/guidance/)

 

PRE/MEETING & ASSESSMENT WITH THE SERVICE USER The usual processes for assessing suitability for the LivDem course still apply when working online. However, in addition, as receiving the course online will add to the cognitive load placed on participants, then facilitators should also bear in mind the concentration levels of the service user and whether any sensory impairments (hearing or sight loss) may preclude their involvement.

​

Course facilitators will also need to consider whether the service user has access to the hardware, internet and an email address. If some local charities may be loaning laptops and tablets this might be a way to help people to get online.

​

Conducting a pre-meeting with the service user is highly recommended so that they can become familiar with the platform you intend to use (e.g. Zoom, Teams etc). You could consider adapting one of the guides that are available and providing this to help people to use the technology. See https://www.spcr.nihr.ac.uk/PPI/resources-for-researchers/faq/how-do-i-hold-ppi-meetings-using-virtual-tools. Additionally, service users may need help with a variety of aspects that relate to using technology including: how participants log in and out; what to do if they lose connection; muting sound and switching off cameras; and how and when to use the chat facility.  

 

CARER INPUT Just as is the case with LivDem when it is run as a face-to-face course, carers should be invited to attend the preliminary and post-course meetings but should not routinely attend the eight-session course itself. Involving the carer in the pre-meeting is advisable so that they are also aware of how to use the technology and what is expected of their involvement e.g. at the first and last sessions so the other sessions focus on the experiences of the person with dementia. The involvement of carers should be considered prior to the start of the course and should be agreed upon with all parties. It is preferable to run the sessions with just the person with dementia, however, there may be practical reasons not to exclude carers completely, e.g. for assistance with the technology.

 

CONFIDENTIALITY OF THE SESSIONS Moving to an online space to engage with service users can pose new challenges to ensuring the confidentiality and privacy of both the service user and the course facilitator. There are a number of factors to bear in mind when it comes to confidentiality of the session for instance:

• Suggest that people may want to sign in with their first name only when prompted at the initial log in;

• Make sure that service users do not share their link to the sessions with anyone else;

• Make sure that no one is recording the session;

• Send emails as blind copy/BCC so as not to share email addresses with the rest of the group; Send the link to the session in an email and not in a calendar invite to ensure confidentiality of the email address;

 

SESSION LENGTH (suggested timings) Session length in total should be no longer than 1.5 hours. This time would include a 10 minute period at the beginning to allow people time to log into the session, get support from the facilitators and informal time for ‘socialising’. The LivDem session content would then be delivered over an hour with at least one comfort break included allowing people to move away from the screen (not to log off), get a drink and social time. Provide a final 10 minutes at the end for another opportunity for social interaction. During this time one of the course facilitators can be available to talk to service users away from the group (either via another video call or on the phone) should people wish to talk through any concerns.

 

CONTENT AND DELIVERY OF SESSIONS Alongside the existing ground rules of the LivDem course, there may be additional options to raise in relation to the etiquette of online delivery. For instance, service users should not record the sessions and remind them it is helpful to mute their microphones when not speaking. Other options to aid delivery include service users raising their hands to speak (either physically or using the button on the platform) unless this becomes a barrier to open conversation amongst the group and to switch on their videos if they have one so that they can become familiar with each other.

​

Service users may be reluctant at first to talk online. The videos provided via the LivDem website of people talking about their experiences may be a useful ice-breaker activity to get an initial conversation going. Make sure that the audio on your computer is set correctly so that the video sound comes through on the platform you are using.

​

Sessions can be provided through a PowerPoint presentation and sharing your screen. Blank slides can be included to add feedback from interactive sessions. Alternatively, some platforms have a whiteboard function or a simple Word document can be used. Ensure the font is large enough to read, as it can look smaller through sharing screen content.  

 

DEALING WITH DISTRESS The LivDem course addresses difficult emotional experiences. This might be more difficult to manage and support when working remotely with service users. There are additional support mechanisms that can be put in place to help people manage and deal with distress and the added frustration that might arise when people try to use the internet/computer:

​​

• Leaving time at the end of a session for people to engage with facilitators on a one to one basis;

• Making sure that the phone numbers of participants are to hand should you need to contact them separately for support;

• Having two facilitators providing sessions, so that one can contact people separately;

• Using the same inter-personal strategies for containing distress as in face-to-face work;

• Including distress tolerance as part of the wider assessment process;

 

GROUP FACILITATORS Given the potential unfamiliarity with linking with others online, group facilitators may need to be more directive in their approach to engaging service users in discussions.

​

It is still advisable to have two facilitators delivering the course online so there is someone able to support a service user should they become distressed and/or if there is a loss of internet connection. Think about how you may share screen content. Will one of you control the screen or will you share this responsibility? On some platforms (e.g. Teams), you are able to request control of someone’s screen so this might be a possible way to share the presentation.  More information on sharing and controlling screens for MS Teams can be found here: https://support.microsoft.com/en-us/office/share-content-in-a-meeting-in-teams-fcc2bf59-aecd-4481-8f99-ce55dd836ce8 or in Zoom here: https://support.zoom.us/hc/en-us/articles/201362153-Sharing-your-screen-content-or-second-camera.