Using digital technologies to facilitate social inclusion during the COVID‐19 pandemic: Experiences of co‐resident and non‐co‐resident family carers of people with dementia from DETERMIND‐C19

Abstract Background The COVID‐19 pandemic triggered rapid and unprecedented changes in the use of digital technologies to support people's social inclusion. We examined whether and how co‐resident and non‐co‐resident family carers of people with dementia engaged with digital technologies during this period. Methods Throughout November 2020‐February 2021, we interviewed 42 family carers of people with dementia from our DETERMIND‐C19 cohort. Preliminary analysis was conducted through Framework analysis, followed by an inductive thematic analysis. Findings Digital technologies served as a Facilitator for social inclusion by enabling carers to counter the effects of the differing restrictions imposed on them so they could remain socially connected and form a sense of solidarity, access resources and information, engage in social and cultural activities and provide support and independence in their caring role. However, these experiences were not universal as carers discussed some Challenges for tech inclusion, which included preferences for face‐to‐face contact, lack of technological literacy and issues associated with the accessibility of the technology. Conclusion Many of the carers engaged with Information and Communication Technologies, and to a lesser extent Assistive Technologies, during the pandemic. Whilst carers experienced different challenges due to where they lived, broadly the use of these devices helped them realise important facets of social inclusion as well as facilitated the support they provided to the person with dementia. However, to reduce the ‘digital divide’ and support the social inclusion of all dementia carers, our findings suggest it is essential that services are attuned to their preferences, needs and technological abilities.


| INTRODUCTION
'Social inclusion' emphasises the need for people to have the material means as well as the agency and unconditional opportunities to access, participate in, and personally grow from social and cultural experiences and inter-personal relationships that are valued and meaningful to them. [1][2][3][4][5] It is widely regarded as a dynamic process that individuals and communities experience over time, in different situations and within their wider experiences of social exclusion. [6][7][8] Within an increasingly digitised society, having access to digital technologies that enable participation is increasingly posited as a human right and an integral component of social inclusion. 9,10 Over recent years, an increasing range of technologies have emerged within the dementia care arena and scholars have highlighted ways they can support the social inclusion of people with dementia and their carers. [11][12][13] Digital Assistive Technology (AT) such as medication aids and locator devices can overcome some of the cognitive and physical challenges of dementia, thereby providing people with dementia and their carers with a greater sense of independence. 12,14 Information and Communication Technology (ICT) such as telecare and virtual social platforms can provide a means for people to socially connect with informal support networks and dementia care services when face-to-face engagement may not be possible. 15,16 Finally, off-the-shelf digital Gaming Technology (GT), which supports interactive electronic games such as tablets or motion sensor exergaming devices (e.g. Nintendo Wii and Microsoft Kinect) can provide opportunities for people with dementia and their carers to participate in new leisure experiences that are potentially stimulating and enjoyable 11,17 as well as enable them to master new and sometimes complex skills, increasing their perceived selfconfidence. 18,19 Despite these benefits, people with dementia and their carers face multiple barriers to engaging with these technologies, thereby inhibiting their abilities and rights to participate fully in society.
Challenges can be attributed to generational (e.g. older people without the knowledge, skills or confidence to use technology) or geographical (e.g. rural-dwelling with limited/intermittent access to the Internet) determinants that may be prevalent in older carers and so contribute to their digital divide. 20 Other difficulties include those directly linked to the biopsychosocial challenges of dementia. Many digital technologies have not been designed with people with dementia in mind resulting in interfaces that may be cognitively or physically demanding for this group. 12,13,16 Other research suggests the cognitive efforts required to use social media can act as a barrier to engagement for some people with dementia, and that stigmatising attitudes and negative language surrounding the condition can be common on these platforms. 21 Consequently, carers are likely to be required to support the engagement of the person with dementia, further adding to their strain and detrimentally impacting on their independence. These challenges may be difficult to overcome particularly if carers lack the knowledge and skills to select and, where necessary, adapt technologies to ensure they are inclusive of people with dementia. 22 In late 2019, a new coronavirus (COVID-19) emerged causing global disruption and stringent restrictions on social contact, activities and service provision, resulting in adverse impacts particularly on the well-being, burden and support capabilities of family carers of people with dementia. [23][24][25][26] It also triggered rapid and unprecedented changes in the use of digital technologies throughout society 27 as these became essential for many people to sustain social connection. 28 Given the aforementioned challenges that people with dementia and their carers may encounter when engaging with digital technologies, existing inequalities and the 'digital divide' may have been exacerbated, detrimentally impacting social inclusion for those affected by the condition. 29 To promote a future socially-inclusive dementia care agenda, it is of value to explore whether and how people with dementia and their carers used digital technologies during the pandemic, examining both the benefits and challenges experienced. This could provide important insights to inform policy and practice that seeks to support social inclusion.
Currently, qualitative research that specifically addresses this topic is scarce. The majority of studies examine, more broadly, the experiences of people with dementia and their carers during the pandemic and often note an increase in their use of digital technologies to engage with formal health and social care services. [30][31][32][33] Although Giebel et al 34 found that those unpaid carers and people with dementia that accessed digital support during this period reported these services to be of poorer quality and less effective than in-person contact. One UK study that explored the use of ICT by people with dementia during the pandemic found they used these mediums to facilitate social connection, engage in hobbies and interests, and assist in activities of daily living; although people with dementia also encountered accessibility challenges due to cognitive fatigue and usability issues with the technology. 35 However, the authors' noted that participants tended to be younger with mild-tomoderate dementia, occupied privileged socio-economic positions and were already using digital technology pre-pandemic. Consequently, it is unknown whether the findings can be extrapolated to older people from more diverse backgrounds, and who may be less accustomed to these devices. Another study qualitatively examined the use of digital technologies by people with memory concerns and their predominantly co-resident carers (90% of the sample) in the United States. 36 They found that carers used technology to remain socially connected, to reduce boredom by streaming music and films or attending online classes, and to enable periods of respite and independence through the use of Global Positioning System (GPS) technologies, which helped to ensure the person with dementia was safe whilst outside alone. The authors noted that carers often had to be present when the person with dementia engaged with a technology, and if the family carer lacked computer literacy or the person's dementia was too severe, then this could add to carers' stress and the person with dementia's confusion, and so provide challenges for the digital inclusion of both.
Adopting a similar qualitative approach, we aim to build on these preliminary findings by exploring, in-depth, carers' experiences of using digital technologies during the pandemic as a means to sustain their social inclusion as well as to facilitate the support they provide to the person with dementia they care for. Our large and diverse sample of participants, purposively selected from the DETERMIND study, 37 enabled us to consider the experiences of people from a wide range of socio-demographic backgrounds who were supporting people with varying severities of dementia. In particular, our design enabled us to draw comparisons between the experiences of carers who live with the person they care for (hereafter 'co-resident carers') and those who care for someone living elsewhere (hereafter 'non-coresident carers'). This is important, since it is likely they encountered different challenges throughout the pandemic, potentially affecting the digital technologies they chose to adopt (if indeed they did) and the purpose for which they were used.

| Research approach
This paper reports on one key theme that was elicited from broadranging interviews with carers' during the COVID-19 pandemic; namely 'the use of digital technology during the pandemic.' Data were collected as part of DETERMIND-C19, which is situated within the wider DETERMIND programme. Further details of these studies are provided in Supplementary Table S1

| Interviews
Open, in-depth 'responsive' interviews enabled a flexible style of interviewing with questions evolving in response to the interviewee's discussion, thereby enabling a deeper exploration into the experience and knowledge of each interviewee. 38

| Data analysis
This took place in two stages. Preliminary analysis of the whole dataset was conducted using Framework analysis. 39 This preliminary stage was undertaken as a means to reduce the initially large dataset into something that was more easily manageable. Subsequently, an inductive thematic analysis of the data was conducted to examine specifically carers' use of digital technologies. This followed the 6stage analysis process as outlined by Braun and Clarke 40 which involved developing initial codes at a latent and semantic level and then constructing these into themes and sub-themes through the development of mind-maps and discussions amongst the wider research team. Table 2 provides a more detailed overview of the twostage analysis process.

| Theme 1: Facilitator of social inclusion
Both co-resident and non-co-resident carers discussed using multiple forms of digital technologies during the pandemic. These enabled them to retain important facets of their social inclusion despite the lock-down restrictions.

| Sub-theme 1: Social connection and solidarity
The majority of carers discussed incorporating a range of ICT, including virtual communication platforms and social media, into their lock-down routines to enable them to remain socially connected with family, friends and the local community within these "challenging circumstances." Co-resident carers reported sitting alongside the person with dementia and using virtual technologies such as Zoom or Facebook Portal to regularly call family and friends. They welcomed the ability to be able to sit together and connect with friends and family from all over the world on the same screen and "to see someone's face and know they're ok". There was a sense that these technologies enabled a greater sense of social connection than could have been achieved over the telephone, and were easier to facilitate access together, and this was beneficial for carers' psychological well-being and that of the person with dementia. For instance, one co-resident carer positively discussed sitting with the person with dementia to call a family member in a care home and participate in their activities.
The care home have put on a few Zoom parties. We sit here and have mince pies and a glass of wine, or T A B L E 2 Two stage analysis process.

Framework (Ritchie et al., 2013) Braun and Clarke (2006) six phase thematic approach
An initial thematic framework structure was developed by the researchers who led the interviews (BH, KG and JD). This was based on the topic guide, familiarisation with the interviews and the charting of several transcripts. Separate frameworks for co-resident and non-co-resident carers were constructed and discussed with a multi-site team of 13 researchers and final refinements undertaken. Following training, all researchers charted the remaining transcripts into the frameworks and included their own analytic notes. The completed frameworks were shared so the team could familiarise themselves with the data and other team members' notes. Following this, pairs of researchers were tasked with developing broad themes within different areas of the frameworks. A meeting was convened to discuss the emerging themes. At this point it was evident that the use of digital technologies was a prevalent theme throughout carers' accounts of the pandemic and featured in most aspects of the frameworks, although co-resident and non-co-resident carers sometimes used these technologies for different purposes. Therefore, in a second stage of analysis, a more detailed inductive analysis of this sought to understand what and how digital technologies were being used by resident and non-resident carers.

Data familiarisation
The transcripts were read and re-read by BH to familiarise himself with the data. 2. Initial codes developed Data were coded individually at three levels: Individual transcripts were read line by line to identify key messages into codes. This occurred at a semantic and latent level. Definitions were drawn up for each code by BH and these were discussed among the research team. 3. Themes searched Relevant codes were collated into potential themes through discussions between the research team. Codes that were not deemed relevant were recorded as miscellaneous. 4. Themes reviewed Thematic mind-maps were developed to better understand how the themes sat together and to construct higher level themes. 5. Themes defined and named Themes were reviewed by the wider DETERMIND-C19 research team and then defined and named. Miscellaneous codes were re-visited to examine whether they sat within the wider findings. A cross case analysis was undertaken to explore any differences in themes between participants based on their socio-demographic characteristics. 6. Write-up The most appropriate participant quotes illustrating the key points pertinent to the research were selected for the final manuscript. The inductive themes and codes were then considered through the lens of social inclusion.
HICKS ET AL. The carer also discussed how she sent digital photos to the Portal to provide her mother with a stimulus to begin conversations with care staff. This demonstrates the multiple ways non-co-resident carers could use digital technology to facilitate social connection for themselves and the person with dementia.
Given restrictions on face-to-face meetings both co-resident and non-co-resident carers discussed using virtual platforms to contact counsellors or peer support groups where they could access emotional support within a "safe environment". One non-co-resident carer highlighted the benefits of attending a virtual carer support group that was run by an Admiral Nurse during the lock-down. She discussed the importance of developing a sense of connection and solidarity with people who did not know her or her mother during these difficult times. Furthermore, the format of the meeting also technologies could enable them to remotely manage some of the care needs of the person with dementia when face-to-face visits were restricted. For instance, one non-resident carer discussed setting her mother up on Face-time. As she was also looking after three children during the lock-down, this reduced some of the pressure on her to be physically present with her mother in the mornings to ensure that she was washed and dressed. This was particularly beneficial given that the home caring service, which used to support her mother with these activities, stopped during the early periods of the pandemic. (non-co-resident, female, 62) Furthermore, two non-co-resident carers discussed using a digital 'pill carousel' that provided reminders for the person with dementia to take their medication. These were linked up to a service that would then ring the carer if they had concerns. Again, these were beneficial given the restrictions on face-to-face visits and the reduction in home care assistance, which may have previously provided these services.
Co-resident carers also discussed introducing certain ATs into the home environment to attempt to reduce some of the care burden and so provide them with periods of respite. one non-co-resident carer discussed, his mother was "old school" and so he felt that it would be difficult to move her onto "modern methods". With the right support for carers and people with dementia they may have been able to engage with digital technology more than was attempted and so take advantage of some of the benefits it may have provided them during the pandemic.
Where carers did attempt to support the person they cared for to use digital technologies they occasionally reported difficulties. Interestingly, these instances were not confined to those Another discussed how she was required to ring her mum on the phone to "guide her" through how to answer her call over virtual platform, which again added time to her caring responsibilities. These experiences meant that some carers were fearful of a move towards a more digital society post-pandemic as this may result in the longterm social exclusion of some people with dementia.
I sometimes find everything's on the internet now…but my mum can't do that, she can't look for help, she can't do anything with computers…and that is a challenge for her. (non-co-resident, female, 52)

| DISCUSSION
Through qualitative, in-depth interviews, we examined how coresident and non-co-resident carers of people with dementia experienced the pandemic, the challenges they encountered and the sources of support they drew upon. The use of digital technologies was a prominent theme in the majority of our interviews. Adopting a social inclusion lens, we found that many carers, irrespective of their socio-demographic characteristics, employed ICTs, and to a lesser extent ATs, at the start of the UK lock-down. Interestingly there were limited discussions around the use of digital gaming devices during this period, which may suggest, as other research has posited, that currently this is something rarely considered by people with dementia and their carers (due to fear, lack of knowledge or belief it is unsuitable for them) or promoted in the dementia care agenda. [26][27][28][29] The ICTs and ATs used by the carers we interviewed were largely welcomed as they enabled them to achieve important facets of their own social inclusion as well as helped them to provide care and support to the person with dementia, despite pandemic restrictions. Indeed, for some of our older carers, this unanticipated opportunity to learn how to engage with these digital devices contributed to their sense of achievement. Developing new skills for life-long learning is posited as an important facet for social inclusion as we age. 4

| Social inclusion of co-resident carers
For co-resident carers, these digital ICT devices enabled them to sit with the person with dementia and together satisfy their need for social connection with family, friends and neighbours. They also HICKS ET AL.
-9 of 13 provided a mechanism for carers to engage in social and cultural activities that were integral to their identities and provided them stimulation, a means to relax as well as, in some cases, opportunities to develop their relationship with the person with dementia and find solidarity with other carers during these difficult times. These are all key components for social inclusion. [4][5][6][7] Carers who resided with the person with dementia could also help facilitate their interactions with these devices and so support their sense of social connection with family, friends and community groups. ICT also enabled co-resident carers to remotely access vital resources such as food and medication and so reduce the need for them and/or the person with dementia to put themselves at risk of catching COVID-19 by visiting shops and services. Furthermore, it provided carers access to information that could help keep them informed on the pandemic, and crucially enabled them to access medical and dementia care information when physical access to formal healthcare services was restricted. On the rare occasions that AT was discussed, it was often seen as beneficial for co-resident carers as it provided them the opportunity to manage the care needs of the person with dementia whilst enabling them periods of respite and independence from their caring role. These benefits were important for their well-being.

| Social inclusion of non-co-resident carers
Non-co-resident carers benefitted socially in a similar way to coresident carers from the use of digital technology during the pandemic as it facilitated connection with family and friends as well as enabled them to develop a sense of solidarity with other carers. However, they were also able to use the devices to satisfy the different care requirements they encountered due to the restrictions imposed during the pandemic. Non-co-resident carers used ICT to arrange for food and medication to be delivered to the person with dementia and so negate the need for them to always do this themselves. This was particularly welcomed by carers who lived a great distance from the person with dementia or who were responsible for providing care to other younger family members. In some cases they were also able to use ICT and AT as a means to remotely manage the care of the person with dementia when face-to-face visits were restricted or home care services were no longer being used.
This included using virtual platforms to call and check on the wellbeing of the person with dementia as well as using AT to remotely manage their medication routine. This was particularly important as other research has shown how paid home care help was discontinued during the pandemic because of Governmental restrictions or the decisions made by carers to reduce the risks of infection, further adding to the care burden particularly on non-co-resident carers. 32,41 Whilst there was some evidence that incorporating these devices was successful, it is important to note that there was a heavy reliance on the carer to set up and manage them from afar. As noted in other research, 36 this could result in additional stress and strain particularly if the interventions did not work out as planned. This will be revisited later in the discussion.

| Supporting technological inclusion for carers of people with dementia
In keeping with other studies, 36

| Strengths and limitations
Purposively sampling from our wider DETERMIND cohort enabled us to explore the accounts of a large number of resident and nonresident carers from a wide variety of socio-demographic backgrounds who were supporting people with varying degrees of cognitive impairment. Furthermore, as our recruitment procedure did not rely on social media or online dementia networks we were able to examine the accounts of carers who were less technologically knowledgeable to better understand the barriers they encountered.
However, our study has limitations. All carers were already participating within the wider DETERMIND study and so represent a population that may be more inclined to undertake research. As such, caution must be taken when extrapolating the findings as they may not be representative of the wider population. Furthermore, the carers were supporting people with dementia within their first year of diagnosis and so again are unlikely to represent the breadth of the population, particularly those supporting people with more severe dementia. Whilst our sample reported a range of experiences, those having very difficult times due to the pandemic may have felt unable to participate in this aspect of the research and so offer their valuable insights. Our remote interview methods that were necessitated by the pandemic restrictions may have also meant we excluded some carers who were most at risk of digital exclusion. Finally, while we included participants from Black, Asian and minority ethnic groups, our sample did not allow for detailed analysis of the experiences of specific ethnic or cultural groups.

| CONCLUSIONS
The COVID-19 pandemic triggered rapid and unprecedented changes in the use of digital technologies throughout society and our data showed that many of the co-resident and non-co-resident carers chose to engage with these devices during this period, often through necessity. The technologies ensured the carers could achieve important facets of their social inclusion as well as facilitate care and support for the person with dementia by overcoming the differing challenges imposed on them by the pandemic. However, we must be mindful as we look to learn from the pandemic. Whilst a greater emphasis on digital technologies within dementia care policy directives may bring benefits for carers it may also exacerbate inequalities and the 'digital divide' and so further exclude certain carers. To ensure the social inclusion of all, our findings suggest it is essential that dementia services are attuned to carers' preferences, needs and technological abilities and where appropriate provide dementia-friendly training to enhance tech literacy and knowledge. It is also vital that the dementia-friendly communities' agenda 9 extends to the online environment to ensure that practices are inclusive of people with dementia and those who support them.