Working with experts by experience: different approaches over time

At the Association for Dementia Studies (ADS) we try to ensure that our work is informed by people with dementia and their families, i.e. those with a lived experience of dementia. Over the years the ways in which we have achieved this has evolved, sometimes through choice and sometimes in response to personal and global circumstances. This blog provides an overview of the different approaches we have used and some of the learning we have taken on board, which links to a previous blog post about experiences of filming video content during lockdown.

Who are our experts by experience?

Within Worcestershire and the surrounding area, several people with dementia and their family carers who we worked with formed our LINK group of ‘experts by experience’. We collaborated together on a number of our education programmes as well as providing input to our research activities.

Why is it important to work with experts by experience?

The value of working alongside experts by experience is multi-stranded. First off, they provide a different perspective and offer insights that people who have not necessarily had a direct experience of dementia may never have considered. By working as our partners, they also keep us honest and grounded, which hopefully helps to make our work relevant and relatable. As much as we like thinking outside the box and exploring new ideas, if it’s not going to work for people with dementia it needs to be redesigned.

It’s also important for students on our education courses to hear directly from people who live with dementia on a day-to-day basis, as their accounts are often far more powerful and impactful than anything a lecturer could teach. It’s this role on education courses that is the focus of the remainder of this blog.

How has our education work changed over the past few years?

Originally, our experts by experience delivered sessions in person as co-tutors on face-to-face courses, both within the University of Worcester and the local area. During these sessions they shared their thoughts and experiences of living with dementia and the impact it has had on their lives.

However, as the ADS training provision expanded both in terms of the number of courses and the locations being further afield, it became trickier for members of the LINK group to be involved in person. This was particularly the case for people with dementia who did not have a family carer and may require more support in terms of organisation and travel. Additionally, as personal circumstances changed and their dementia progressed, it became less appropriate for us to ask our experts to be involved in the same way. It was also important to ensure that people didn’t feel that they were obliged to be our colleagues, or feel that they were letting anyone down if they were unable to do particular dates.

ADS still wanted to ensure that the views of our experts formed part of our education, so we worked together to produce a series of short films to capture those views. These films enabled our experts to still be an important part of our education provision, even if they were not physically in the room teaching alongside us. Critically, feedback indicated that hearing from the LINK group via the films was still having a powerful impact and was valued by students on our courses.

What about involving experts during current situation?

During the Covid-19 pandemic we have been continuing to develop new modules for our online Postgraduate Certificate in Dementia Studies. To ensure the educational offering was of the highest quality and relevance, it was important to enable the experts by experience to continue to contribute to these modules. As well as using the LINK films as part of the teaching, we have a former carer supporting us as a member of a group convened regularly to ensure the quality of our online provision. One of the activities we had intended to undertake was to film several new video clips with some members of the LINK group to focus on specific topics being covered in the modules. Obviously the original plan had been to film these face-to-face, but the pandemic forced us to change our way of working. Although initially worried about carrying out the filming remotely using an online platform, we have successfully been able to do just that with both a family carer and a person living with dementia. As a previous blog post reflects on some of our filming experiences, the following focuses on the learning that we’ve taken away from the process.

What have you learnt from the online filming experience?

Don’t try and do it alone

• Get others involved – It can be useful to have different people involved in the filming with clearly defined roles, to help things run smoothly. For example, have one person focusing on the technology and recording side of the process, and someone else taking a lead on actually conducting the interview or conversation that you want to capture as this allows them to give their full attention to the carer or person with dementia. Additionally, depending on the needs of the person you’re working with, find out if they need additional support to take part in the filming. This could be in terms of talking through ideas and formulating responses to questions that may be asked during the filming, or practical help with technology. If there is a supporter taking on this role, get to know them and make sure they know what’s going on.
• Work as a team – While one person may be leading the work, realise that actually the filming process relies on teamwork as everyone will have their role and their own strengths.
• Build relationships – Above all, make sure there is time to build relationships within the team. You may all know each other anyway, but it’s likely to be a new way of working for most of you. Make time for social interactions outside of any more formal activities to ensure that everyone feels comfortable in the online environment.

Preparation is vital

• Think about the technology – While many of us have had to quickly learn new skills and access various online platforms to attend meetings and webinars, it doesn’t mean that everyone is tech savvy. Make sure that whatever way you choose to do any filming is easy to access and use, and doesn’t require people to have specialist equipment. Setting up a test session (or two) to check that everyone can actually ‘be’ in the same place at the same time and see and hear each other is important. Don’t try and actually do anything formal during any tests, just use them as part of your familiarisation process and relationship building, as it will help everyone to feel more comfortable and confident.
• Plan what you want to ask – Our filming used an interview style with the Module Lead asking a question and our expert responding. This gave a clear structure but was flexible enough to adapt to individual circumstances. This ensured that the approach was person-centred and respectful of everyone involved. For example, rather than springing questions on the experts and expecting them to come up with an answer there and then, we provided a list of questions well in advance. This type of approach enables people to think about what they want to say, work out what is important for them to get across, and organise their thoughts. It also provides the opportunity to clarify anything that people are unsure about, or even suggest additional questions that could be asked which can enhance the recordings.
• Clear communication – It can be useful to send reminders ahead of sessions, clarifying what the intention of a particular session is and reiterating what link should be used to access it.

Allow plenty of time

• Be realistic and flexible – It’s important to recognise that filming isn’t necessarily going to be a quick process. Some expert colleagues might need more preparation time and catch-up sessions than others, or longer between sessions, before they feel ready to begin filming. You need to start the process well in advance of actually needing the films as it’s not fair on anyone involved to try and rush things.
• Be guided by your experts – This applies not just during the preparation phase, but also during filming sessions. Everyone is different, and while some people may be happy to film everything in one long session others may prefer multiple shorter sessions. Even if you plan for a session to last for a particular length of time, e.g. two hours, be aware that you might need to stop before that. If that means having to set up extra sessions to cover all your topics, then that’s what you’ll need to do.

Be aware of the potential impact of filming

• Have regular breaks – Being part of an online session can be tiring, even when you’re not doing any talking or filming, and sometimes more tiring than being part of a face-to-face session. With this in mind, make sure that you break up the sessions. Whether this is actually taking a break to go and get a drink or nip to the toilet, or just having a bit of a chat between different questions, it’s important to make sure that each session is not a solid block of recording.
• Check everyone is ok to continue – Related to the above, make sure that you regularly check everyone is ok. Don’t forget that during the sessions you may be covering delicate subjects, and colleagues may be reflecting on their lives and what has been going on for them, which can bring up difficult memories and emotions. Be aware that in a virtual situation it can be more difficult to judge how everyone is feeling and you’re not there in person to provide comfort or support. It can be a tricky situation to manage, particularly remotely, and potentially emotional for you too, so don’t underestimate the impact that the filming process can have on everyone involved.

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