‘I want every minute to be worthwhile now’: The views and experiences of people living with dementia and their care partners about returning to in-person group meetings after COVID-19 lockdown restrictions

Phase 1

How do people living with dementia and their care partners feel about re-engaging with community groups once the current lockdown restrictions are eased and what measures are required to support individuals to feel safe enough to reengage?

Phase 2

What are the views and experiences of people living with dementia and their care partners about re-engaging with a community-based group post-lockdown?

The flexibility of this approach allowed for the necessary broad exploration of how participants felt about (1) re-engaging in community groups before they were able to reopen and (2) the specific measures that group facilitators can put in place to make the environment as safe as possible. Observational data collected during phase 2 enabled a richer understanding of how participants experienced the shift to in-person meetings. Participants were consulted about the analysis of phase 1 and phase 2 data sets. Online meetings were held with the specific purpose of deliberating the findings, and in these meetings, each thematic area was discussed, refined as required and agreed.

Planning for and the reality of transitioning

In phase one of the study, 3–4 months after the initial national lockdown in England, participants expressed a strong desire to return to in-person meetings. Though, nuance was found in their reported willingness to reengage with groups and their opinions about safety. These differences can be most aptly described as a desire ‘to just get on’ versus a desire for a cautious approach.

As long as I can get out and meet people, I don’t care, 'cause at the moment, as I said before, to me, this is not…this is not existing. (PLWD5)

Of the 13 participants at phase 1, people living with dementia and their care partners were the most eager to reengage in community groups. With the exception of PLWD1, who did not express a view, all participants with dementia and care partners appeared either keen to return to the groups immediately or to reengage in the near future, albeit with safety measures in place. Former care partners were more cautious, with the majority noting that they did not feel the groups could return safely in the near future.

It is not immediately apparent as to the difference in opinion on re-engagement, although it is possible to make some assumptions based on the content of individual phase 1 interviews. It is likely, for example, that people living with dementia and their care partners have a different lived understanding of the reality of experiencing a lockdown situation with dementia and were clearer about the negative impact this was having upon their own mental health, their wellbeing and their cognitive functioning (as reported elsewhere Bushell, Innes and Smith forthcoming). CP2 for example said that his willingness to reengage with groups immediately, stemmed from his partners need for social contact:

[The groups are] great for Annette. Different environments again, different scenery, different conversations, and activities, which is the important thing with Annette. (CP2)

While people living with dementia spoke of their willingness to reengage with community groups from the perspective of safeguarding their mental health and wellbeing, care partners and former care partners expressed some concern about how possible this might be whilst ensuring the physical safety of the group. One former care partner, for instance, questioned whether people living with dementia would have the cognitive abilities to understand social distancing guidelines in the community:

You don’t know what other individuals are going to do and what their understanding of the rules and regulations are, because unless they have that full capacity, and they know fully what it is that is being expected of them. (FCP1)

This perceived inability for people living with dementia to maintain social distance was identified as a reason why individuals might be reluctant to reengage with groups. CP1, for example, expressed some reluctance in re-engaging with others:

Because there were some people [who say] I’ve got dementia what the heck, something is going to get me anyway why worry. (CP1)

People living with dementia however felt that they could be trusted to act in line with UK Government guidelines:

Most people are sensible. Even though they might have some memory problems. (PLWD4)

Although concerns can be linked, the reality was that every individual interviewed had a different perception of the dangers of re-engaging in community groups. These ranged from a carefree attitude on one hand to extreme concern on the other. Ultimately, it was down to the individual to assess the level of risk they are willing to take once groups open up again, a point identified by CP1:

I think, we have got to decide what is acceptable risk, and we all have to live with a level of risk. What is acceptable, what is your bottom line, the things that you won't have, you know. (CP1)

However, attitudes to reengage were not solely founded upon the individuals’ perception of the threat of COVID-19. One participant living with dementia, for instance, felt that their abilities had altered to such an extent that they would struggle to attend groups:

I don’t know if I’ll be able to cope with these groups. I can't recognise faces anymore; I can’t understand names. I’m not a person for giving up, but it might be easier. Some days I think it might be easier just to chuck it all in. (PLWD3)

It is against this backdrop of concerns and their entwined desire to meet again that the planning for a return to in-person meetings was based up-on. We now consider the participants experiences of meeting in-person again.

Planning for the reality of the transition to in-person meetings required an understanding of individual readiness (on not) to engage with community groups and the reasons for their position to ensure that appropriate methods of engagement were found and that were as safe as possible. A key step in this transition to ‘on-site’ in-person meetings was having an initial meeting at a local garden at phase 2 of the study. This ‘staggered’ approach to re-engagement was designed with the participants over the course of lockdown to ensure that their voices and lived experience were integral to planning and decision-making.

In phase two of the study, when participants began to meet in-person again, they demonstrated adaptability, flexibility and an acceptance to the everyday changes they were faced with. Often, this was grounded in their understanding that being together again physically required a compromise.

People have different feelings about it all, but you just figure it out between you don’t you. It’s about respect. (CP1)

This was inherently tied to their effort to preserve the group. Where the pandemic had revealed certain divisions in how they felt about the return to – and future of – the groups, they sensed throughout both phases of the study that a lack of acceptance and resilience could mark the end of their time together:

If we’re going to keep it going, there’s no use wishing like it was. (FCP4)

Participants had a shared understanding that things will not just go ‘back to normal’; that the groups will not fall back into the form they once held. Though this was not always regarded as a source of anxiety or concern, rather also expressed as a positive in how it has given them an opportunity for change:

It’s like we’re back starting afresh, back to the drawing board really isn’t it. (FCP6)

During phase one, participants had expressed concerns around the problematic nature of reintroducing face-to-face meetings after a long period/s of isolation, but at phase two they all expressed that the transition was well-paced and stress free. Importantly, this ‘smooth transition’ was grounded in how the participants were an integral part of the planning process:

The group highlight that knowing what to expect is critical and CP1 notes a smoother transition was possible because they’ve ‘planned it for so long’. (First meeting observation)

Virtual meetings, email contact and phone calls during lockdown(s) were found to enable participants to remain involved in decision-making about the planned return. They promoted feelings of worth and autonomy and helped to identify a phased return that reflected not only COVID specific guidelines, but aligned with their own individual understandings of safety.

I like the slow return, I’m not as nervous, it’s like we are easing into reality again. (PLWD4)

When the groups did begin again participants expressed great delight in being together again, and sharing an activity outdoors as the first step to re-engagement was particularly enjoyed:

The group, who are in the herb gardens, discuss how nice it is being able to explore something new together outdoors. How being isolated makes being outside and the ability to see new things more important whilst also feel safe and not confined. (Garden observation)

During phase two, all participants noted that virtual contact had kept them meaningfully connected across the lockdowns, but it was not understood to be the same as connecting in-person, and, as such, highlighted the crucial importance of face-to-face interaction. This was particularly felt among by those living with dementia and current care partners, which reinforces the notion that loneliness has been exacerbated by the effects of the pandemic among this group:

It did the trick but wasn’t a cure - you’re still terribly isolated, especially if you have dementia. (CP1)

Obtaining the views of participants prior to returning to in-person meetings were thus key to planning the return to meeting in-person. This eased the transition for participants and responded to their need for social contact and interaction in a setting where they had preserved a keen sense of belonging and ownership.

Safety versus autonomy

Every participant mentioned ‘safety’ in the context of mitigating the risk of contracting COVID-19. However, what ‘safety’ might entail varied widely from person to person, with those who felt happy to reengage with community groups immediately being more relaxed about safety measures.

At phase one of the study, when asked about the specific measures that might be put in the venue to make engagement in groups as safe as possible, participants mentioned the layout of the indoor space, keeping two metres apart, the outside space, the use of face masks, the toilet, the kitchen area and sharing equipment. Again, the measures they felt would be expedient varied from person to person and were impacted by their own attitude to risk and their own personal circumstances.

England’s government guidance stated that individuals from different households should stay two metres apart, and whilst some individuals felt that it was possible to achieve this within the venue, others felt it would not be possible as the venue was too small to enable any form of social distancing:

It’s quite big inside as well, and we’ve got tables and chairs, so we can keep two metres or a metre apart. (CP2)

Two people suggested that this might be remedied by reducing the size of the groups, while one individual living with dementia feeling that social distancing was irrelevant:

I wouldn’t mind if I was sitting right next to somebody. (PLWD5)

The outdoor space at the venue was identified by six participants as a way that groups might be able to take place while maintaining social distancing. For example:

If we’re meeting outside… to have a few tables outside of the wall, that would be good… So, I would quite like to see a few activities that we can do outside. (PLWD3)

However, it was recognised that outside groups may not be as pleasant in colder, wetter weather. In addition to this, the use of the toilet and kitchen area was raised as problematic as these facilities would still need to be open to participants even if the group chose to meet outdoors:

What my concern is the fact that we only have one toilet so if people use that toilet who’s actually going to sanitise it? Who’s going to clean it? Who has that responsibility to do that? (FCP1)

The kitchen proved a less contentious issue since it was easier to avoid using this area and for people to bring their own refreshment to groups, though sharing items was still often voiced as a concern; particularly in reference to sharing art and craft materials:

Why can’t people bring their own, like a small picnic effect, and everybody has their own drinks. (CP2)

While participants raised issues, they were not seen as unsurmountable barriers to re-engagement. The compulsory wearing of face coverings, however, was a more controversial topic amongst individuals. Individuals who appeared more risk averse during phase 1 interviews felt that coverings should be worn, however, some voiced that they did not want to wear a mask at social groups at both phase one and two of the study:

I’m not sitting there wearing a mask, no. (PLWD4)

Despite the safety measures suggested by individuals, two former care partners questioned whether it would be possible to reengage people at the usual venue at all, even if all the measures advocated were put in place:

Is it really possible under these sorts of constraints to reopen something like the [venue]? (FCP1)

Though most phase one participants (n = 13) appeared confident that groups could reopen successfully at some point the future. And when the groups did reopen, at phase two, participants felt confident in what was happening; mood questionnaires highlighted that all participants (n = 10) felt well-informed about the process of re-engagement. Although some changes were confusing, they expressed that the smaller numbers and high levels of involvement in decision making about what in-person meeting would be like had led to a calm and positive experience.

All participants generally reported feeling safe and supported to return to in-person meetings, though interestingly, at phase two of the study, care partners and former care partners showed no anxiety about group members forgetting to wear a mask or socially distance. For those living with dementia however, their ability – as well as the ability of others – to remember rules and regulations could be a source of concern:

I’m concerned about people forgetting what the rules are or being expected to remember the rules myself. (PLWD3-mood questionnaire)

This was found to be particularly difficult in how these rules were not a constant, rather shifted and changed over time and across different spaces. Keeping up with conflicting guidance was therefore felt to be cognitively taxing for participants:

The group talk about how rules are especially confusing when other groups they attend don’t follow the same rules. FCP5 notes how much uncertainty and confusion this causes. (First meeting observation)

However, alongside these concerns, those with dementia often recognised that smaller groups made it safe for them to participate with more ease, given they could follow and participate in group discussions:

I can follow what’s going on now. (PLWD1-mood questionnaire)

Participants also reported enjoying the increased level of planning that went into reformulating the groups and activities. This was expressed to not only allowed participants to feel safe, but also to allow them to claim more autonomy in a wider context that had curtailed their decision-making abilities.

I do like that we plan things more now it helps you know what’s going on, I think. (PLWD4)

Though a tension was found in the balance between participants feeling both safe in the environment at the same time as being able to maintain their independence. There was an acknowledgement among the group that the increased rules and regulations of COVID-19 can jeopardise their role in the process of planning a ‘safe return’ and therefore curtail their autonomy. Experiences of disempowerment were often discussed in relation to their inability to safely engage in everyday tasks associated with attending the groups:

It is hard, we’re part of the process yes, but we can’t just get up and make a cup of tea together. (FCP6)

While this tension was more generally felt among all participants, there was some differences apparent in how they perceived the impact of the safety measures that had been implemented. Former care partners, in particular, often noted at phase two that the on-site environment was ‘not quite the same’ or ‘missing that sparkle’. (PLWD4).

Those living with dementia and their care partners, however, reported that ‘it’s like it always was’ (PLWD3). Though, it should be noted here that amidst these differences, all participants felt that complications regarding their experience of safety measures were worth it, indicating that their return and presence there is about more than just autonomy, rather about their collective enjoyment and engagement:

There’s still an overarching sense of happiness though [...] the participants discuss the positive difference that seeing each other face to face - albeit briefly every week - makes. (Second meeting observation)

The tensions in providing a safe environment while also preserving and rebuilding autonomy is complex and underpins some of the broader issues we now consider in relation to the ‘new normal’.

Tensions and complexities of life in the ‘new normal’

Whilst participants had look forward to re-engaging with the groups in person, they recognised that the nature of group activities would have to change significantly when these meetings were permitted. Art, craft and gardening activities, for example, were seen as challenging:

If you’re inside and you’re running a group, say like an art group, well how can you do that? Because people are touching different things that other people have had. (FCP1)

One individual living with dementia spoke of their regret that the groups would have to look and feel different to adhere to Government and University guidelines and mitigate the risk of spreading COVID-19:

I know it’s not going to be like it was, and that’s another thing that really upsets me. (PLWD5)

While another highlighted the fact that people living with dementia may struggle to come to terms with those changes both in community groups and community settings more broadly:

I suppose the way we do things now is so different and it might be difficult for people maybe living with dementia to adapt as quickly as that. (PLWD2)

A common understanding thus existed amongst participants that careful consideration should be paid to the reality of engagement post-lockdown(s). In this way, whilst all participants reported via both the first and second mood questionnaire that they felt happy and well supported to return to meet in-person, data during phase two highlighted key changes in how they experienced this space. Some participants felt they the environment was safer than ever; somewhere they felt comfortable and content:

Nice to be back it feels like a safe warm space. (PLWD4 – mood questionnaire)

However, the participants’ experience of the environment was multifaceted. The space also represented one of loss. With reduced numbers at the groups given regulations around distancing, some group members choosing not to return, and a number of deaths within the group over the past 2 years, the participants felt these social changes had shifted their relationship with the venue:

The participants look at the photos of past group members of the wall and talk about how different it feels there with the loss of those who have left or died. FCP6 says: ‘it’s just not the same place without them’. (Second meeting observation)

Further, while the participants in the moment experiences often reflected feelings of satisfaction once they returned, it became apparent at phase two that the uncertainty of the pandemic continued to unsettle their perceptions about the future of this environment. For instance, CP1 questioned:

Will it (the venue) ever be the same as before, we just don’t know. (CP1)

The pandemic thus led the group to reconceptualise their relationship to the group venue in complex ways, and, as such, could result in them feeling both emplaced and displaced all at once. Related to this was the complexity the participants experienced when navigating the physical space of the venue. The first outdoor meeting gave them room to negotiate the environment with ease, and move through it in ways that felt right to them, though certain difficulties became apparent at the first indoor venue meeting. While some participants quickly aligned with social distancing measures and mask wearing regulations, others showed a gentle resistance in effort to connect in a way that they wanted and therefore reminders to adhere to regulations were necessary.

There are some reminders needed to separate and distance – there’s difficultly in balancing the experiences and perceptions of different people. (Second meeting observation)

Although these reminders were not met with hostility, they could disrupt the flow of the atmosphere among the group and set the scene for bursts of interactional tension. In addition, more generally, the practicalities of everyday movements – such as leaning in to listen to a story and going to the toilet – could also prove difficult; and a new focus on them could result in a challenge to keep the space feeling naturalistic and familiar.

Importantly though, this struggle to maintain a sense of independence was experienced differently by those living with dementia and care partners/former care partners. Where those living with dementia expressed that the ‘slower paced’ environment at their first in-person meet was empowering in how it allowed them to participate without feeling overwhelmed, care partners and former care partners felt the activities were too simplistic and thus disempowering as they were not challenging enough to suit their needs:

Group unanimous that today has been special and enjoyed there not being ‘too much’ on. PLWD3 looks forward to hosting the next group activities and notes it gives them a purpose again. (First meeting observation)

This balance between the empowerment and disempowerment of participants as they resumed attending in-person meetings was tied to their broader concern to advance and contribute to the ‘dementia agenda’ for change, awareness and improvement. As members of the Dementia Associate Panel, they had previously enjoyed experiencing collective and individual influence by sharing their views and experiences pre lockdown (Innes et al., 2021). This was spoken about something they wished to pick up again, though with the pandemic bringing life to a standstill, the stagnant nature of the world was often raised as an underlying source of tension given the impact it had on their ability to plan and push the agenda forwards. Participants often expressed that they had lost their purpose and place:

I just don’t feel useful anymore, you want to make a difference more than ever now and we can’t really, can we. (FCP5)

This begins to highlight how being part of the group post lockdown is not just about socialising for the participants, rather about how it empowers them to come together in a supportive, common space to advocate and make a difference at a time where it is ‘needed more than ever’. (CP1 – mood questionnaire) It should be noted however that participants did not passively accept barriers to activism, rather they wanted to find ways to work around them and reported looking forward to the challenges of finding new ways to approach their engagement and action.

Group are discussing the garden party planned in September. Who to invite, what difference can be made, getting the message out there. Seem ready to be in the driving seat again. PLWD3 notes: ‘you need to feel like you’re making a difference to something’. (First meeting observation)

Their effort to do this was tied to a re-evaluation of their involvement in the group. Where the participants could, at times, feel they had lost their purpose because their sense of activism was being curtailed by the pandemic, their desire to regain this was more important than ever as they felt periods of isolation had led them to reimagine and review their lives and commitments.