Social support services for dementia during the COVID‐19 pandemic: A longitudinal survey exploring service adaptations in the United Kingdom

Abstract Objectives To understand how the delivery of dementia‐related social support services across the UK adapted during the pandemic. Methods We devised a two‐part online and telephone longitudinal survey. Providers participated between March and June 2021, and again 3 months later. Information relating to services delivered and delivery methods employed was collected before and during the pandemic at two timepoints (T1 and T2). Results A total of 75 participants completed the survey at T1, with 58 participants completing the survey at both timepoints. Thirty‐six participants had complete data at T1. Day care centres and support groups were the most delivered primary services. During the pandemic, services shifted from in‐person to remote or hybrid. While in‐person services started to resume at T2, most services remained hybrid. At T2, the frequency of service delivery increased, however, a decreasing trend in usage was observed across survey timepoints. The telephone was the most employed format to deliver remote and hybrid services, however, reliance on videoconferencing software significantly increased at T1. Videoconferencing software was often used alongside the telephone and emails to remotely deliver services. Conclusions Services were able to adapt and provide support to some service recipients. Complementing novel approaches to service delivery with more traditional formats may facilitate access to service recipients with limited digital literacy. Following the easing of public health measures, many service recipients may be reluctant to engage with in‐person services. Thus, the provision of in‐person and remote services needs to be carefully balanced amidst the current hybrid landscape. Patient or Public Contribution Two public advisors (a former unpaid carer and a person living with dementia) were involved in designing and piloting the tool, interpreting the results and disseminating the findings. Both public advisors have experience in delivering dementia‐related social support services before and or during the pandemic in the United Kingdom.


| INTRODUCTION
Dementia is a growing public health issue. Characterised by declining cognitive functioning, dementia holistically impacts individuals' daily life 1,2 There are currently over 920,000 people with dementia in the United Kingdom, a number which is projected to rise to over a million by 2024. 3 In the absence of a cure, equal access to responsive postdiagnostic support that addresses the needs of people with dementia and their unpaid carers is important to living well with the condition. 4 Postdiagnostic support includes all services that respond to the changing support and care needs throughout the disease trajectory. 5 Good postdiagnostic support is characterised by the timely identification of needs and provision of holistic support. 6 Social support services form part of postdiagnostic support, and can be defined as nonclinical services that aim to support community-dwelling people with dementia and unpaid carers to live well and independently. In the United Kingdom, social support services are provided by a mixture of public, private and voluntary sectors 7 and delivered across various care settings. Services may include peer support groups, befriending services, day care centres, social activities, respite care and paid home care.
The usage of social support services is likely to vary throughout the disease trajectory. Possible benefits include promoting independence and reducing feelings of loneliness among people with dementia. 8,9 Social support services may facilitate opportunities to engage in meaningful activities, which is considered important to living well with dementia. 10,11 Furthermore, unpaid carers may equally benefit from accessing social support services, and psychoeducation and psychosocial interventions are thought to positively impact on the perceived caregiving burden and depressive symptoms. 12,13 While the use of social support services should be guided by people with dementia and unpaid carers' changing needs and preferences, access remains unequal. [14][15][16] Barriers to access are numerous, and may include rural residency and being from an ethnic minority or a socioeconomically deprived background. [17][18][19] The coronavirus (COVID-19) pandemic significantly impacted the lives of people with dementia and unpaid carers, 20,21 and is likely to have engendered long-term consequences. 22 Many social support organisations were required to stop in-person service delivery for extensive periods. The diminished opportunities to engage in activities and to socialise with others is thought to have contributed to the overall worsening of dementia symptoms, and general wellbeing of people with dementia and unpaid carers. [23][24][25][26] Challenged with a lack of available respite care and often undertaking additional caregiving duties, some unpaid carers reported an increase in caregiving burden. 21 Nevertheless, some social support organisations adopted novel approaches to service delivery and continued to provide support to people with dementia and unpaid carers.
The reliance on the use of information communications technologies (ICT) across the service delivery landscape increased during the pandemic. Research exploring the use of ICT to conceivably facilitate timely and flexible access to remote postdiagnostic support has largely focused on the medical management of people with dementia 27,28 and or reducing the caregiving burden. 29 However, before [30][31][32] and during the pandemic, 33-36 some social support services for people with dementia or the dyad were delivered remotely. Largely delivered by videoconferencing software, services included peer support groups, 34 memory cafes 36 and exercise health 30,32,33 and singing classes. 35 Accessing support remotely appears feasible, nevertheless, difficulties while navigating ICT were often experienced. Furthermore, while remote services were generally well received, some people with dementia and unpaid carers preferred accessing services in person. 36 Despite a growing evidence base outlining the impact of the COVID-19 pandemic on people with dementia and unpaid carers, 20,21 little is known about how social support services across the United Kingdom have adapted during the pandemic from the service providers' perspective. Therefore, this longitudinal online and telephone survey sought to compare (1) the types of social support services delivered and (2) the delivery methods employed; before and at two time points during the pandemic. Findings may provide insights into planning the delivery of social support services in prospective public health crises and possibly help satisfy the nationwide digital transformation agenda for health and care services. 37 2 | MATERIALS AND METHODS

| Participants and recruitment
This study defined social support providers as someone who delivers nonclinical community-based social support services to people with dementia and/or to unpaid carers in a paid or unpaid (volunteer) capacity. Eligible social support providers met the following criteria: (1) currently working (paid capacity) or helping/volunteering (unpaid capacity) to deliver social support services within the public, private of voluntary sectors in the United Kingdom; (2) delivering social support services to people with dementia and/or to unpaid carers CAPRIOLI ET AL. | 1727 living in the community; (3) either directly involved in delivering social support services or involved in the management/organisation of the delivery of social support services and (4) at least 18 years of age.
Social support providers were recruited through convenience sampling. We contacted social support organisations (publicly available email addresses and telephone numbers), engaged with social prescribing routes, advertised the study on social media (Twitter) and in internal university newsletters. Social support providers who have participated in our study will henceforth be referred to as 'participants' and the term 'service recipients' refers to people with dementia or unpaid carers who have accessed social support services delivered by participants in our study.

| Data collection
The study involved completing a survey at two time points (T1 and T2). T1 included retrospective details about prepandemic service delivery and current data. This generated three time points for analysis. The data collection period for the survey at T1 lasted from the 25th of March to 4th of June 2021. Participants were reinvited, via email, to complete the survey at T2 3 months after they had completed the survey at T1. Three weeks were allocated to complete the survey at T2, with, if required, reminders sent to participants every 6 days after the initial invitation to complete the survey at T2.

| Variables and tool
Information on the following variables were collected: 1. Characteristics of participants (age range, gender, ethnicity, years of full-time education completed and years of working or volunteering as a social support provider).
3. Services delivered (types of services delivered, identification of primary service [primary service refers to the service participants were delivering the most]). 4. Delivery methods employed (in-person, hybrid or remote, use of digital and non-digital formats). 5. Usage of primary service (service recipients; number of service recipients accessing service during a regular month).
The first survey obtained information on all variables listed above, and elicited information on service delivery before the pandemic (retrospectively) and at T1. The second survey solely obtained information regarding service delivery at T2.
The survey was piloted with a public advisor and with other research team members before data collection. Both public advisors and one member of the research team have experience in delivering dementia-related social support service before and or during the pandemic in the United Kingdom.

| Data analysis
Data were exported from Jisc Online Surveys to Microsoft Excel.
All analysis was conducted in SPSS (version 27). The sample characteristics, services delivered and delivery methods employed were summarised at each survey time point using descriptive statistics. The Shapiro-Wilko test was used to test for normality.
The number of hours worked/volunteered prior to the pandemic and at T1 was compared using the Wilcoxon-signed rank test and compared across the three survey timepoints using the Friedman test.
Collected postcodes enabled the index of multiple deprivation (IMD) quintile to be generated for each service provision area.
Although the calculation of the IMD differs slightly across the countries within the United Kingdom, the index provides a relative measure of neighbourhood deprivation by considering multiple factors including income, employment, education and health. The IMD score is ranked into five quintiles, with the first representing the most deprived and the fifth the least deprived areas. 38 Obtaining the IMD quintiles of service provision areas may help to discover discrepancies in adaptation of service delivery across the United Kingdom.

| Survey completion
A total of 75 participants completed the survey at T1, and 58 participants completed the survey at both timepoints. Two participants at T1 and one at T2 completed the survey by telephone. The remaining participants completed the surveys online. As outlined in Figure 1, following the cleaning of the data sets, a total of 36 (48.0%) participants had complete data entries at T1, and 22 (37.9%) participants at all survey timepoints. Only participants with complete data entries were included in the analysis.

| Participant and provider characteristics
Most participants identified as female, White and at least 35 years old. Participants mainly delivered services in a paid capacity, within the third sector and in areas classified within the third and fifth IMD quintiles (Table 1).
While the numbers of hours worked/volunteered slightly

| Service provision before and during the pandemic
Participants delivered a median of two services across all survey timepoints. Social activities and support groups, followed by day care centres and accompanying/befriending were the most delivered services (Supporting Information: Table S2).

| Types of primary services delivered
A total of 28 participants (77.8%) delivered the same primary service before the pandemic and at T1. Thirteen participants (59.1%) delivered the same primary service across all survey timepoints. Support groups, day care centres and social activities were the most delivered primary services across survey timepoints. Services were mainly delivered to people with dementia and unpaid carers (Tables 2 and 3).

| Delivery methods and formats employed to deliver primary services
A shift from in-person to hybrid or remote services was observed at T1 (Table 2). At T2, the number of remote services halved, and most services were hybrid (Table 3).
Telephone calls, emails, website resources and the post were used to deliver remote and hybrid services before the pandemic.
While the telephone remained the most employed format to deliver remote and hybrid services during the pandemic, the use of videoconferencing software significantly increased at T1 (Tables 4   and 5). Compared to prior to the pandemic, 22 more participants used videoconferencing software at T1, and the format was most employed to deliver remote or hybrid support groups, advice and information provision and social activities ( Table 6). Thirteen participants used videoconferencing software to remotely deliver services at T1 (Table 4). Apart from three participants (23.1%) who solely used videoconferencing software, most participants complemented the use of videoconferencing software with the telephone (n = 9 [69.2%]) and or emails (n = 7 [53.8%]). The two participants (13.3%) who did not use videoconferencing software, remotely delivered services by formats including telephone and post (Table 4).
At T1 and T2, a small number of participants employed formats to deliver remote and or hybrid services (e-learning, internet forums and internet portals) that were not used before the pandemic (Tables 4 and 5).
F I G U R E 1 Flowchart depicting participation flow and completion rates during the longitudinal study. The uppermost boxes indicate the number of participants who completed the survey at each timepoint. Following the removal of (1) incomplete data entries (missing responses), (2) inconsistent data entries (contradicting responses within the same data entry), (3) participants not delivering social support services, (4) no service recipients accessing social support services (5) losses to follow up (participants who did not complete the survey at both time points), a total of 36 participants has complete data at T1 and 22 participants had complete data at both survey timepoints.

| Frequency of service delivery and usage of primary services
Across the survey timepoints, the frequency of service delivery per regular month increased, and a small, but important, decreasing trend in usage was observed ( Figure 2 and Supporting Information: Table S2). Compared to before the pandemic, in-person services at T1 were delivered more frequently but accessed by almost a third of service recipients (Table 2). At T2, the use of in-person services increased and the use of hybrid services remained similar to T1 (Table 3).

| COVID-19 mitigation measures implemented to deliver primary services
All participants implemented mitigation measures when delivering in-person services (either as part of fully in-person or hybrid delivery models) at T1 and T2. Social distancing, wearing personal protective equipment and the COVID-19 vaccination of social support providers, were the most implemented measures (Table 7).

| Satisfaction with primary service delivery
Before the pandemic, participants were most satisfied when delivering services in-person (Table 2). At T1 and T2, remote and hybrid services yield similar satisfaction levels, and most providers were 'fairly satisfied' (Table 3).  The use of videoconferencing software peaked when public health restrictions were most restrictive, and may have been used as an interim to see one another when doing so in person was unsafe.
Delivering services by videoconferencing software is likely to have engendered a steep learning curve, which may include adapting the content delivered 35,40,41 and identifying how to optimally facilitate engagement with people with dementia and unpaid carers. 33,34 Delivering services by videoconferencing software may be time effective 27 and, compared to the telephone, the format offers visual cues which may help foster a sense of connection with people with dementia and unpaid carers. 33 However, compared to delivering services in person, the use of videoconference software may present some drawbacks. For example, some providers reported challenges in assessing and progressing people with dementia participating in an T A B L E 2 A summary of primary services delivered, service recipients and usage per delivery method before the pandemic and at T1 (n = 36  'not the same' as in-person services, 34,36 and their preferences on how support is accessed needs to be considered. T A B L E 4 A summary of formats employed to deliver hybrid and remote primary services before the pandemic (n = 10) and at T1 (n = 32) (overall data set n = 36).  Although not a new delivery method in itself, we observed that reliance on hybrid services significantly increased during the pandemic. In our survey, hybrid services continued to feature as public health measures eased, and subsequently, removed. People with dementia and unpaid carers who accessed remote services during the pandemic valued the support received, however, some preferred in-person services. 36 Once legally allowed, services gradually began to deliver socially distanced in-person services, often in small groups and or outdoors. 39,42 This aligns with our findings, and is likely to explain the increased frequency but fewer service recipients accessing in-person services at T1. Nevertheless, the opportunity to access services remotely following the removal of the public health measures is likely to facilitate access to some service recipients in our survey. Subsequent to 2 years of confinement, people with dementia and unpaid carers may remain cautious and fear engaging in-person activities. 22,39 In addition, many people experienced a deterioration in their dementia symptoms, 20,22 and accessing services in person may no longer be feasible or desirable.
Thus, the ongoing opportunity to access services remotely, while inperson services are resuming, is likely to be important for some T A B L E 6 Formats employed per hybrid or remote primary service at T1 (n = 32) (overall data set n = 36). The data that support the findings of this study are available from the corresponding author upon reasonable request.
T A B L E 7 A summary of COVID-19 mitigation measures employed to deliver in-person or hybrid primary services at T1 (n = 14) and T2 (n = 18) (overall data set n = 22).