Effects of social restrictions on people with dementia and carers during the pre‐vaccine phase of the COVID‐19 pandemic: Experiences of IDEAL cohort participants

Abstract This qualitative study was designed to understand the impact of social distancing measures on people with dementia and carers living in the community in England and Wales during a period of social restrictions before the COVID‐19 vaccination roll‐out. We conducted 12 semi‐structured interviews with people with dementia aged 50–88 years, living alone or with a partner, and 10 carers aged 61–78 years, all living with the person with dementia. Three of the interviews were with dyads. Participants were recruited during November and December 2020. We used framework analysis to identify themes and elicit suggestions for potential solutions. We identified three interrelated themes. People with dementia experienced a fear of decline in capabilities or mood and attempted to mitigate this. Carers noticed changes in the person with dementia and increased caring responsibilities, and for some, a change in the relationship. Subsequently, reduced confidence in capabilities to navigate a new and hostile environment created a cyclical dilemma of re‐engaging where an inability to access usual activities made things worse. People with dementia and carers experienced neglect and being alone in their struggle, alongside feeling socially excluded during the pandemic, and there was little optimism associated with the upcoming vaccine programme. People found their own solutions to reduce the effects of isolation by keeping busy and being socially active, and practising skills deemed to help reduce the progression of dementia. This and some limited local public initiatives for the general public facilitated feelings of social inclusion. This study adds understanding to existing evidence about the longer‐term experience of social isolation several months into the pandemic. It highlights the importance of health and community groups and suggests how services can find ways to support, include, and interact with people with dementia and carers during and after social restrictions.


| INTRODUC TI ON
The social distancing measures introduced to minimise the transmission of COVID-19 resulted in restrictions in social contact, and for some, isolation for long periods, with consequences for psychological, social, and physical health for people with dementia (Pongan et al., 2021). These consequences could be particularly significant for people with dementia and their carers, groups for whom social inclusion is particularly important with regard to maintaining well-being (Greenwood et al., 2018;Pinkert et al., 2021). Under normal circumstances, people with dementia are vulnerable to social isolation due to a reduction in social networks and support (Kane & Cook, 2013;Gardiner et al., 2018). People with dementia and carers are already marginalised (Wright & O'Connor, 2018) and potentially at the risk of social exclusion resulting from individual circumstances, health status, social attitudes, and policy frameworks (Khan et al., 2015;Pinkert et al., 2021). Pandemic-related restrictions could increase the risk of social exclusion, especially for those with difficulties accessing healthcare and civic amenities (O'Rourke et al., 2021a;Seifert et al., 2021). Among the dimensions of social exclusion commonly experienced by older people (Walsh et al., 2017), three domains are most likely to be exacerbated by the impact of pandemic-related restrictions: social relations, services, amenities and mobility, and neighbourhood and community.
International evidence has already highlighted the complex difficulties experienced by people with dementia and carers due to social restrictions during the pandemic (Clemente-Suárez et al., 2021).
Early surveys suggest that protracted isolation has triggered an increase in neuropsychiatric symptoms and functional decline for people with dementia (Borelli et al., 2021;Clare et al., 2021;Cohen et al., 2020;Ismail et al., 2021;Simonetti et al., 2020), and qualitative studies have reported worsened cognitive ability, anxiety, and irritability . Carers have experienced deterioration in mental and physical health (Alzheimer's Society, 2020; Masterson-Algar et al., 2021) due to the increased burden of care and lack of access to support or respite (O'Rourke et al., 2021a;Cagnin et al., 2020;Canevelli et al., 2020;Carpinelli Mazzi et al., 2020;Giebel, Lord, et al., 2021). These challenges have affected social relations, placing extra strain on the relationship between the carer and the person with dementia and fuelling feelings of isolation , especially in the context of restricted face-to-face interaction. At the same time, services, support, and amenities became unavailable with the closure of dementia services, reduced access to healthcare, and shifts to telehealth appointments (O'Rourke et al., 2021a;Kalicki et al., 2021;. Several studies conducted earlier in the pandemic have suggested that social distancing measures and the closure of support services have led to feelings of abandonment amongst people with dementia and carers (Bacsu et al., 2021;Clare et al., 2021;Giebel, Lord, et al., 2021;O'Rourke et al., 2021a;Rochford-Brennan & Keogh, 2020). Feelings of abandonment could indicate that people were experiencing social exclusion. In this study, we set out to explore further the impact of pandemic-related social restrictions and the extent to which these contributed to a sense of social exclusion, and to examine what might help to prevent or mitigate such effects.
We conducted qualitative interviews with people living with dementia and carers during a period of changing social restrictions eight months after the start of the COVID-19 pandemic in England and Wales, and before the introduction of the vaccination programme.

| Design
This is a qualitative interview study using framework analysis to identify themes in participants' accounts (Gale et al., 2013).

| Recruitment and data collection
INCLUDE-Identifying and mitigating the individual and dyadic impact of COVID-19 and life under physical distancing on people with dementia and carers  is embedded within the longitudinal IDEAL cohort study (Clare et al., 2014;Silarova et al., 2018

What is known about this topic
• Social restrictions to manage COVID-19 infections had negative impacts on cognitive functioning and mood for people with dementia early in the pandemic.
• Carers struggled with the temporary closure of dementia services and associated respite.

What this paper adds
• People with dementia and carers did not feel they could return to previous activities when things reopened, and this did not change when the vaccination programme was announced.
• A further decrease in confidence and perceived decline in people with dementia was a barrier to returning to usual activities.
• People with dementia attempted to minimise decline and to stay socially engaged, but they, and their carers felt they did this alone, and felt socially excluded during the pandemic.
Participants in the INCLUDE study who had already been interviewed using remote methods for the quantitative survey element of the study, who were still living at home and had consented to be contacted for a follow-up interview (n = 35 individuals at the time of recruiting), were eligible. People with dementia and carers, either as individuals or dyads, were invited. We used convenience sampling whilst attempting to capture some diversity (male and female, different dementia types, England and Wales) in the sample. Potential participants received information about the study in their preferred format and were given time to ask questions, and time to consider taking part. Consent was provided by telephone or Zoom, and was recorded by the researcher.
CP and RC (both experienced post-doctoral researchers working for the IDEAL programme), telephoned 27 people. Six were not contactable and two were not telephoned as we stopped recruiting when the vaccine roll-out started. Interviews were offered by telephone, Microsoft Teams, or Zoom, according to individual preference, and participants could conduct the interview in one or several shorter interviews according to their wishes.
Participants were recruited between November 4, 2020 and December 1, 2020. In England and Wales, the vaccination programme was expected to start early in December. In England, COVID-19 infection rates had risen to 664,700 cases in the week ending November 14, and in Wales infection rates had stabilised to 18,400 cases (Office for National Statistics, 2020). On November 5, England moved into the second national 'lockdown' with guidance to stay at home except for essential shopping or medical needs, and not mix with another household accept for caring needs.
Medically vulnerable people were no longer required to isolate, but people aged over 60 years were advised to minimise social contact.
However, across England, restrictions were expected to ease during the December national holidays. In Wales, from November 9, restrictions were eased somewhat. Social venues and non-essential shops reopened allowing up to four people to meet, and travel restrictions within but not beyond Wales, were lifted.
Interviewers (CP and RC) conducted semi-structured interviews with no theoretical focus using a topic guide (Table 1) designed with input from the IDEAL Patient and Public Involvement (ALWAYS) group . The questions aimed to elicit the experiences of participants from their perspective as someone with dementia, or a carer of someone with dementia. The interviewers asked about the implications of the current restrictions, any changes to routine, any received or missing support over the course of the pandemic, and any expected implications of the vaccine programme.

| Analysis
Two researchers (CP and RC) undertook framework analysis as it offers a systematic methodology to develop themes and is well-suited to analysis of semi-structured interviews with a policy focus (Gale et al., 2013).
All interviews were digitally audio-recorded and transcribed verbatim, anonymised, and uploaded to Nvivo12.
Analysis followed the stages of Framework as set out by Gale et al. (2013). The researchers familiarised themselvs with all interviews by reading the interview notes and transcripts and listening to the interviews. They then independently open-coded two carer transcripts and two transcripts from people with dementia, and developed the first framework inductively by comparing and revising the codes until agreement was reached. The framework was then applied to the remaining interviews. CP and RC revised the framework together as the interviews were coded. Themes were then developed by organising the codes of the revised framework into categories and themes relevant to answering the research questions. CP then charted the coded data into a matrix to explore differences and similarities among people with dementia and carers, and then tested possible interpretations against the original data. CP and RC discussed the emerging findings with the research team, including RL who discussed the findings with our Patient and Public Involvement Group (Litherland et al., 2018) to explore alternative interpretations.

| Participants
Two researchers conducted 19 interviews representing 22 people: 12 people with dementia and 10 carers. Two people with dementia and two carers were Welsh, the others were English. Three of

Timeline Topic
Start of lockdown Difficulties or changes to daily routines.
Own coping strategies and or support found to be helpful.

Some loosening of restrictions
Additional or missing support or information that might have been helpful.
Any unexpected benefits or outcomes, and how they might be maintained.
The situation now Training or information health or social care professionals or volunteers need to help people with memory difficulties in the COVID-19 situation.
TA B L E 1 Topic guide showing topics raised for each of the stages experienced during the pandemic the interviews were conducted with dyads interviewed together, and the members of one dyad (PD4 and C4) were interviewed separately. The other 13 interviews were with individuals not connected with any other participant. The mean duration of interviews with people with dementia was 37 min. Carers' interviews averaged 40 min, and the joint interviews averaged 49 min. The most common dementia diagnosis was Alzheimer's disease (7/12), the ages ranged between 50 and 88 years, and 4/12 lived alone.
Carers were aged between 61 and 78 years, all lived with the person with dementia, one was the son and the others were married or in a partnership. Participant characteristics can be found in Tables 2 and 3.

| Themes
The topics raised by participants during the interviews are grouped under three main themes. These comprise (a) fear of decline-the concern about a loss of skills caused by social distancing measures and efforts to avert decline; (b) frustration concerning the dilemma of re-engaging-not feeling able to return to normal even when restrictions are eased, and (c) neglect-disappointment about the lack of concern or consideration from individuals, groups, and authorities.

| Fear of decline
There were some people with dementia who had few concerns and enjoyed the quiet time during the pandemic, but the overarching feeling was that there were negative impacts on dementia-related symptoms and mood, related to not feeling able to engage in usual social and other activities. This incentivised people with dementia to attempt to avert decline and to maintain a positive attitude by being busy. For carers, the additional responsibility and concerns about decline was difficult.
Many people with dementia understood the importance of social contact and the value of keeping busy to maintain social skills and self-confidence to interact with others. A deterioration in abilities was understood to create difficulties for re-engaging with society, even when restrictions were eased.
P10 my belief is that it was the dementia was accelerated on the communication side because of lack of practice. I wasn't doing things, I wasn't seeing people, not just the vocal side and the hearing side, but because of not being with people my almost body language reading skills deteriorated as well.
Whilst people with dementia spoke of their concern about their progression of dementia symptoms, some carers reported sadness relating to the changes in the skills and behaviour of the person with dementia and a realisation of the impact the changes had on the relationship. People with dementia did not mention this. Another (PD1) enjoyed practising learning new walking routes and memorising names of people he met on his walks, and was also 'quite proud' of improving his diabetes control through increased exercise.
Another man (P10) was determined to lose weight and improve his mobility but to maintain distance from people, he walked laps around his communal garden at night.

| Dilemma of re-engaging
People with dementia experienced a dilemma in wanting to return to social activities, but worsened dementia symptoms and continuing barriers within society made that hard, even with the easing of social restrictions. The promise of vaccinations did not instil confidence.
PD6 is it ever going to get rid of coronavirus?
They were wary about safety in the case of future easing of restrictions, and many struggled to remember or did not trust the frequently -changing official information. Some had found it more comfortable to stay indoors. Government information was found to be as confusing and non-specific to dementia, and so people were not sure which rules were relevant.
Carers were also worried that the person they cared for would not be able to follow the distancing or mask-wearing rules (C10, C4 and C2

| DISCUSS ION
This study explored the impact of social distancing measures on people with dementia and carers living in the community during restrictions and before the COVID-19 vaccination roll-out in England and Wales. We identified three interrelated experiential themes that add to the existing literature focussing on earlier experiences of the pandemic: fear of decline, the dilemma of re-engaging, and neglect.
Many of the interviewees found ways to adapt their behaviour to stay positive and help prevent a decline in capabilities or mood, but some experienced reduced confidence with a decline in capabilities. This created a cyclical dilemma that made returning to usual activities difficult even during periods of reduced restrictions. Reengaging with society was challenging due to feeling less capable, or feeling that different aspects of society had not adjusted adequately to be inclusive. Knowledge of the upcoming vaccination programme did not instil feelings of hope. These experiences related to several domains relevant to social exclusion (Walsh et al., 2017), in particular services, amenities and mobility, social relations, and community.
The impact of this, although relevant to the older population, was exacerbated by the challenges of living with dementia or caring for a person with dementia.
In this study, cultural, social, and emotional dimensions of exclusion impacted heavily on both people with dementia and carers during the pandemic because meaningful social connection both at a personal and a civic level was important for self-worth and stimulation to help avert dementia progression. There was less evidence to show that people felt excluded at an economic or environmental level. These findings support evidence that the quality of relationships and opportunities to socialise are pivotal elements of social inclusion for people with dementia (Pinkert et al., 2021. Quinn, Hart, et al., 2021. Social relations are a dimension of social exclusion in older age (Walsh et al., 2017), but the reduction in or loss of skills in communication during the pandemic for people with dementia could lead to further isolation and restriction of opportunities for social relations and civic engagement. In addition, for carers, increased practical caring responsibilities and dealing with behavioural issues are known to impact the relationship with the care recipient (Quinn et al., 2009), potentially furthering the experience of isolation. Others have found the additional stress caused by having to balance COVID risk with well-being added to carers' responsibilities (Cagnin et al., 2020). In our study, in some cases, the relationship between the carer and the person with dementia seemed to be strengthened by spending more time together, but for others, the relationship with the person with dementia changed with a rapid increase in responsibility and care needs. and macro-(broader social) levels (Pinkert et al., 2021).
The dilemma of people with dementia and carers wanting to re-engage with society but being restricted by changes in dementia symptoms and feelings of increased vulnerability adds understanding to the 'complex health issues' (Pinkert et al., 2021) causing micro-level social exclusion. Both people with dementia and carers experienced exclusion via a lack of consultation about returning to groups or services. Official COVID-19 information was neither clear nor specific to their situation. The consequences of reduced social interaction have been reported by both people with dementia and carers elsewhere (Giebel et al., 2020;O'Rourke et al., 2021b;Talbot & Briggs, 2021), and are anecdotally supported in online forums such as www.demen tiadi aries.org but our data show this was not addressed as the pandemic progressed.
The overarching feeling of neglect amongst people with dementia and carers during the pandemic was identified in our earlier study conducted in the first wave of the pandemic (O'Rourke et al., 2021b).
There is a wider and ongoing problem of social exclusion affecting people with dementia, but this has almost doubled during the pandemic (Cohen et al., 2020), and the lack of hope to move forward out of the pandemic is a cause for concern. A general feeling of needs not being understood could have contributed to low expectations based on experience. To address the consequences of pandemic restrictions, and possibly to gain control, individuals adapted to coping, a process also seen previously (O'Rourke et al., 2021b). Accessing online social activities, groups, and information was a source of comfort for some, but also a source of exclusion for those unable to partici- had not felt able to re-engage in the same way as other members of the public. In the context of moving to post-pandemic 'recovery' with more people vaccinated, a focus on better respite for carers, and on rebuilding confidence and rehabilitation for people with dementia, may be worthwhile. The difficulties in accessing or using the internet to find information and services should be acknowledged and alternative methods for keeping people in contact and informed could be explored. There is a need to offer a range of options for accessing health and social care rather than relying too heavily on telephone-or internet-based appointments for people who may find these forms of communication difficult (Kalicki et al., 2021); the shift to online groups and services was initially welcomed but the longer-term effects are not yet evaluated. Alongside this, governments and policy makers could do more to include the voices of people with dementia in finding ways of allowing them to feel safe accessing the shops, services, and entertainment that normally form part of their lives.

ACK N OWLED G EM ENTS
We acknowledge the support of NIHR Dementias and Neurodegeneration Specialty (DeNDRoN), and Health and Care Research Wales with IDEAL cohort recruitment and data collection.
We gratefully acknowledge the local principal investigators and researchers involved in participant recruitment and assessment within these networks. We are grateful to the IDEAL study participants for their participation in the IDEAL and INCLUDE studies, to the wider group of IDEAL programme researchers, and to members of the ALWAYs group and the Project Advisory Group for their support. Alzheimer's Society is gratefully acknowledged.

CO N FLI C T O F I NTE R E S T
We have no conflict of interest to declare.

DATA AVA I L A B I L I T Y S TAT E M E N T
IDEAL data were deposited with the UK data archive in April 2020 and will be available to access from April 2023. Details of how the data can be accessed after that date can be found here: http://resha re.ukdat aserv ice.ac.uk/85429 3/ INCLUDE data will be deposited with the UK data archive in June 2022 and will be available to access from June 2023.