Our blog this week is by Dr Chris Russell who has been working with Jennifer Bray to enable a variety of people to record video content for his forthcoming module. Here, Chris discusses the process they put in place to work with ‘J’, a lady with dementia. Over to Chris:
The voices and viewpoints of people living with dementia are fundamental to underpinning and informing our distance learning Postgraduate Certificate in Dementia Studies. Capturing insights has been made challenging by the Covid-19 virus and its consequences, however. Nowhere more so than in preparation for the module ‘Engagement and Empowerment in Dementia Studies’, where the original insights of people affected by dementia are essential to learning.
In times where it has been very difficult or impossible to meet with contributors to make films and audio to support online teaching, different solutions must be found. These included making short films via an online platform. The experience of this has been illustrative, however, of how it is so often society that disables rather than dementia. Contributors have stood ready, with tablet or laptop to hand, only to be thwarted by IT operating systems refusing to support the links essential between audio/visual capabilities and the internet. Such challenges foster innovation, with relationships and interactions between humans coming to the fore! Problem solving draws on the skills of each person, with additional friends and contacts consulted, so that the technological gremlins can be faced and vanquished. This blog details how, in times where immediate social contact has been difficult, people with dementia can continue to participate in and contribute to initiatives that will benefit and influence positively the wider world. We explain how a small group of people, including J, a woman in her sixties with dementia, acting together as a teaching team, moved past these initial technical frustrations. In a spirit of partnership and collaboration an online educational offering was crafted, that enabled the voice and viewpoints of J to inform what was provided for students.
The contribution was of particular relevance because ‘Engagement and Empowerment in Dementia Studies’ is a module that explores how people with dementia can take and maintain as much control as they wish within their daily life. It is the ambitions, hopes and aspirations individuals hold, just as much as their needs that must be understood and acted upon. The module locates engagement and empowerment within social citizenship. It uses this theoretical framework to understand what engagement and empowerment really mean for people living with dementia, in particular what ‘everyday citizenship’ might involve, locating this as ‘citizenship in practice’ as well as ‘citizenship as practice’ (Nedlund, Bartlett and Clarke, 2019).
Stage 1 Preparation and planning
Our overall aim was to work alongside a person with dementia, J, to enable her to contribute her original insights to an educational film for use on the module. In early June we held an online meeting with J and her supporter L, who had both previously been given sight of the questions we wished J to respond to in the film. One of the key functions of the first meeting was to test the technology to ensure we could all access the online platform and make filming possible. It also provided an important opportunity for everyone involved to ‘meet’ each other or renew acquaintances as appropriate.
During the meeting, J expressed that she had found it emotionally difficult to consider some aspects of the questions posed. In particular the ones relating to losing control of aspects in one’s life. In fact, it had been anticipated this might be the case when preparing the questions. That is one reason regular meetings had been scheduled and the questions had been posed during support sessions with J’s trusted support worker, L. However, the impact of the Covid lockdown had exacerbated difficulty. Thus, time in our meeting to listen attentively to J and respond empathetically and with care was vital. It was helpful to J for us to make the point that it was because of her insights, especially the potentially painfully ones, that students would gain so much. Indeed it is J’s stated wish as part of this initiative to make an impact and change the approach of practitioners and members of the public towards people living with dementia. J asked us to restate in short succinct written form the aims of the module. After discussion she was happy to continue. This exercise helped the wider teaching team; it is challenging to condense aims in this way, so it was hard, but valuable.
We agreed to progress with time limited SMART actions, relating to specific questions. We were all learning as we made progress, and this is part of the value of the work. The fact this initiative is happening in Covid lockdown adds to the value of it as it relates to module outcomes. Our regular sessions have enabled us to bond as a team, especially as we can see each other via video, but J is the captain and we only go at the pace she is comfortable with. The Module Lead chairs the meetings with a tennis umpire in mind, i.e. ensuring everyone gets a turn, but always giving J the last word. Time is important within this process for preparation, enabling J and L to ask about queries, get responses and then proceed comfortably and happily. However, working remotely has caused additional challenge, for example outside of our group sessions J is dictating ‘down the line’ during telephone calls with L, whilst L is transcribing and facilitating. J reflected on the length of time taken to produce a draft of her script, particularly as the process employed involved scrutiny by a trusted long-term friend.
Early sight of J’s notes enabled positive feedback to be given, reflecting that what J is producing is “phenomenal, useful and L’s input is brilliant”. Indeed, during this process J suggested the inclusion of questions relating to entry into and exit from lockdown as these were two separate and essential contexts that she felt needed to be addressed. Following an agreed period of six weeks for ongoing preparation, a final planning meeting took place in early September.
There was a clear structure to every meeting, which was found to be helpful. For example, starting with time for personal catch up about summertime and holidays – no business – enabled any nerves to be settled. There was a clear distinction between interpersonal and work contexts. A plan for every preparatory meeting was then raised, agreed, and followed, including plenty of time to ensure everyone’s views were heard. J made suggestions regarding the use of photos to complement the recordings, which was agentic. Also, J was able to query where she should be positioned for the filming and whether a laptop would be preferable to her normal tablet, but pragmatic decisions were made to go with what works best for J and where she feels most comfortable. A plan of action and timescale was agreed as a group, with an initial filming session scheduled for mid-September. While this was a 2-hour block, it was made clear that this was an absolute maximum duration, and all filming would be guided by J and take place at her pace.
Stage 2 Delivery and filming
Following an initial catch up at the start of the filming session, J shared a recent painful experience with a friend and former colleague, who’s own situation had led her to question J’s diagnosis of dementia. It was essential we listened to J’s account and made time to engage in that moment, not only because of personal concern, but in the spirit of empathy and collaboration. The Module Lead also ensured that J wished to proceed with the filming and reassured her that we would follow her lead. It was also made clear that we were not expecting to get through all of the questions during that session, but would see how things panned out. A clear structure was followed for the filming itself, with each question being explained and introduced in turn, and J being given as much time as required to respond. As explained earlier, every question had been provided to J and L well in advance with ample time allowed for preparation, and for queries to be addressed.
We ended the question and answer part of the session with half an hour to spare, though there was more to cover. This was correct, however, in the spirit and practice of collaborative citizenship. J took the lead on this, deciding to stop as she felt that two questions needed to be answered together, and she did not have the energy to address both in that moment. It is noteworthy that the former of the two questions was reflective and about loss of control, whilst the latter was more positive and about rebalancing this. We were all keen we did not end on a negative note, and did not want J to feel she had failed in any way, thus J led and directed this approach.
A second filming session was arranged for the following week, which again began with J sharing an upsetting experience regarding changes to the regular support she receives. This was particularly poignant when considering that the scheduled questions required J to reflect on support and control within her life. It was important for J to feel comfortable to share her news with us, and set her subsequent responses in context of her recent experiences. Once again J was afforded plenty of time to settle herself, and ensure that she wished to proceed rather than rescheduling for a different day. Indeed, it was possible to provide emotional support and comfort, albeit remotely, throughout the session, and we checked with J at regular intervals whether she wanted to end the filming early. J reassured us that she wanted to share her views, and we successfully completed the filming well within the timeframe of the session.
To ensure a positive end to the session, we again made time for non-work discussions and confirmed to J how she could continue to be involved in the module, rather than potentially feeling abandoned now that the filming had concluded.
Spoiler alert
Without wishing to reveal everything from the recordings, which will form a key part of the ‘Engagement and Empowerment in Dementia Studies’ module, a few highlights are offered here.
When discussing the support she received, J said that “team work is the new normal” but also that “this sort of teamwork takes time”. This reflects our own experiences of undertaking the filming process with both J and her support worker L. Additionally, continuity of support is valued by J, so having a consistent team throughout the filming process was vital.
Sessions were arranged around J’s abilities, as she works better earlier in the day. When describing her daily ability to focus and contribute to activity and matters she feels are essential to her daily life, J feels that – in her own words – she reaches her sell by date in the early afternoon, but this is regenerated the following day. J is clear she has not reached her own sell by date.
J described herself as “somebody who wants to be involved in the world”, so being offered the opportunity to engage with the module has been very important. She also related that lockdown has brought some advantages as it enabled others to slow down and join her world at her pace. This confirmed that starting the planning and preparation for the filming very early on and working to a schedule that was agreed in conjunction with J was the most appropriate, and indeed only possible, approach.
Final reflections
In some respects, starting a new filming project during Covid lockdown – when the inability to meet in person required the use of a completely ‘virtual’ approach – seems potentially foolhardy. However, as we hope we have demonstrated in this blog, with the proper level of preparation and planning ensuring that the needs and abilities of J were central to everything, it was not just possible but a hugely positive experience for all involved. The film itself enabling J to maintain her place in the world and provide a vital contribution to our education provision, but the other insights and learning she was enabled to offer as part of the film production process have also been invaluable for us as a team.
This was collaborative citizenship in action. It was citizenship in practice and as practice (Nedlund, Bartlett and Clarke, 2019). We were working as a team throughout. J was enabled to lead in aspects she wished to and could, and we considered how best to support this. The most obvious example was about affording sufficient time to enable J to offer what she wished. Others in the team contributed with regards to providing technical support, prompting and enabling J to complete her answers in advance, and helping J organise and refine her notes, but always J was the final arbiter.
Reference
Nedlund, A.C., Ruth Bartlett, R. and Clarke, C.L. (2019) Everyday Citizenship and People with Dementia, Edinburgh: Dunedin Academic Press
For more information about our online modules, please visit our website. The closing date for modules starting in January is 30th November.
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Association for Dementia Studies Blog 
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