Positive Aspects of Dementia Caregiving During the COVID-19 Pandemic

ABSTRACT

Objectives

This project investigated experiences of caregivers of people living with dementia during COVID-19. We recorded caregivers’ perceptions of care before, during, and moving forward from COVID-19, emphasizing positive experiences, coping strategies, creative care adaptation, strengths demonstrated, and benefits of providing care.

Methods

Allied health professionals conducted semi-structured interviews with 26 informal caregivers of people living with dementia. We categorized and thematically analyzed responses as before, during or moving forward from COVID-19.

Results

A range of themes were derived from the data. Pre-pandemic care: (1) focusing on the person living with dementia and (2) working together. During-pandemic care: (1) respecting personhood; (2) connecting with virtues and values; (3) improving relationships; (4) seeking and receiving support; (5) prioritizing self-care; (6) being protective and proactive; (7) making practical changes. Moving forward from COVID-19: (1) strengthening commitment to the person living with dementia, (2) looking after my own needs, and (3) considering practical requirements.

Conclusions

Participants reported positive caregiving experiences in all timeframes, focusing more on their own needs and experiences during and moving forward from COVID-19. This research may highlight informal caregivers’ challenges and needs.

Clinical implications

Enforced isolation produced deeper connections for some caregivers. Caregivers benefit from resources facilitating adaptive care.

KEYWORDS:

• Caregiving
• COVID-19
• dementia
• family caregiver
• informal caregiver
• positive psychology

Introduction

Research into psychological effects of the COVID-19 pandemic has been prolific, albeit focused on negative effects of enforced isolation and other restrictions (e.g., Douglas, Katikireddi, Taulbut, McKee, & McCartney, 2020; Marroquín, Vine, & Morgan, 2020), especially as they relate to dementia caregiving (Aledeh & Adam, 2020; Canevelli et al., 2020; Cohen, Russo, Campos, & Allegri, 2020). There is much to be learned by examining positive experiences, strengths demonstrated, and lessons learned by informal caregivers (ICs). Principles of positive psychology suggest that identifying and analyzing adaptive behaviors can be of great importance in understanding human behavior, especially under challenging conditions (Seligman & Csikszentmihalyi, 2000). Positive psychology is of particular use in considering the experiences of people living with dementia (PLWDs) and their ICs given the focus on personhood and strength-based approaches (Moniz-Cook et al., 2016).

Benefits of dementia caregiving in non-COVID-19 times are widely documented. A critical review of qualitative studies into positive aspects of caregiving has shown ICs perceive several positive aspects to caregiving (Lloyd, Patterson, & Muers, 2016). These positive aspects included finding meaning in caregiving (Shim, Barroso, Gilliss, & Davis, 2013), satisfaction (Ribeiro & Paúl, 2008), and opportunities for growth and mastery (Peacock et al., 2010). From these studies, Lloyd et al. (2016) concluded ICs experience benefits including role satisfaction, emotional rewards, personal growth, competence and mastery, faith and spiritual growth, sense of duty and reciprocity. Further, ICs perceived positive caregiving processes as including acceptance, choosing a positive caregiving attitude, commitment to relationship, creating opportunities, and drawing strength from faith/past challenges/others (Lloyd et al., 2016). Research currently underway aims to determine a theoretical model predicting positive aspects of caregiving, with a particular emphasis on intrinsic and contextual factors (Yu, Cheng, & Kwok, 2021).

Despite these positive aspects to caregiving, the unique circumstances of COVID-19 restrictions mean many caregivers experienced considerable upheaval to their usual caregiving arrangements (Aledeh & Adam, 2020), including sudden unavailability of paid caregivers (PCs) (Savla et al., 2020), almost immediate inaccessibility of residential aged care facilities (RACFs; Dementia Australia, 2020), and restriction of typical supports and methods of maintaining well-being (Canevelli et al., 2020). In this manuscript, RACF refers to any paid residential setting, including high- and low-care facilities and independent living units, that involves paid staff members whose role includes monitoring the safety and welfare of residents. We did not distinguish between different types of residential care as our interviewees used diverse terminology. ICs have reported increased stress (Cohen et al., 2020), insufficient family support and “role overload” (Savla et al., 2020). Indeed, even in the general population, COVID-19 quarantine has had negative psychological effects such as boredom, frustration, anger, anxiety, stress and stigma (Hagger, Keech, & Hamilton, 2020). Considering these findings, further information is needed about how caregivers adapted to and coped with the pandemic. There is plentiful research examining what has not worked; by analyzing positive experiences, opportunities for growth and outcomes of providing care during the COVID-19 crisis, we can consider which aspects have worked well and could be applied moving forward from the pandemic.

This study aimed to determine positive experiences arising from COVID-19, including the creative and adaptive ways in which ICs were able to adapt their caregiving style under pandemic conditions, the strengths on which they drew, and any benefits that may have arisen from this experience of caregiving.

Methods

Ethical approval

This study received ethical approval from The University of Queensland Human Research Ethics Committee (approval 2020/HE001136). Participants were emailed an information sheet outlining the study and relevant contact details for the university’s human research ethics committee and the researchers involved. Their verbal consent was audio recorded at the beginning of their interviews. We chose to seek verbal consent in lieu of written consent due to uncertainty around participants’ ability to leave their homes to mail consent forms under COVID-19 restrictions, and further to reduce the administrative load on participants.

Design

A qualitative cross-sectional retrospective design was used for this study.

Participants

We aimed to purposively recruit a minimum of 20 community-based informal caregivers of people living with dementia based on sample size recommendations by Green and Thorogood (2004). Twenty-eight individuals aged over 18 years who provided unpaid care for someone living with dementia were recruited. Upon reviewing the interviews, two PLWDs were noted as not having received formal diagnoses and were excluded from the analysis given the focus on dementia caregiving. The remaining 26 participants were aged 37–80 (m = 59.81, sd = 11.06). There were eight spouses of PLWDs and 18 adult offspring. Two of the participants discussed both parents having received dementia diagnoses; both parents’ experiences were included here although the age was not given for one participant’s father. The 27 PLWDs for whom there were age data were aged 65–91 (m = 81.70, sd = 7.82). Twenty-eight PLWDs had received diagnoses between 0.75 and 27 years prior (m = 4.30, sd = 4.83). Seven (25%) of caregivers were living with their loved one at the time of the interview. Residential locations are shown in Table 1; these data were collected given level and frequency of support can vary by geographical location (Blackberry, Wilding, Bauer, Winbolt, & Davis, 2020).

Table 1. Residential location of participants

Population Density	N (%)
Metropolitan	14 (54)
Regional centre	8 (31)
Rural	3 (12)
Remote	0

One participant did not respond to this question.

N = 26 Informal Caregiver interviewees.

Procedure

Participants were matched with the present study via a research database, StepUp for Dementia Research, a national database delivered by the University of Sydney, funded by the Australian Government. Researchers apply to advertise their studies on the Step Up for Dementia website, and prospective participants who have subscribed to the website can choose to have their contact details sent to studies of interest. Individuals were eligible to participate if they (1) were aged over 18 years, (2) were the informal (unpaid) caregiver for a person living with dementia, and (3) did not have their own diagnosis of dementia. These criteria were included in the study advertisement and confirmed by self-report at the beginning of interviews. Our research assistants (one psychologist and one speech-language pathologist experienced in working with people with dementia) contacted participants who had expressed interest in our study and invited them to complete an audio-recorded semi-structured interview. All participants who consented to be contacted met inclusion and exclusion criteria and agreed to participate. Interviews were conducted over the telephone or via video conferencing software such as Zoom or Skype and professionally transcribed verbatim.

Interview schedule

Semi-structured interviews were conducted with participants; the questions are shown in Appendix A. The questions were arranged according to life before, during, and moving forward from the beginning of the COVID-19 pandemic. It is important to note that although the questions included in this interview schedule addressed a range of outcomes of caregiving, we chose to only code data which the coder interpreted as a positive experience, outcome or benefit, or instances where interviewees showed a clear personal strength, based on character strengths and virtues described by Peterson and Seligman (2004). Interview duration was 25:54–74:37 minutes (m = 45:26; sd = 11:12). Interviews were conducted between June 25 and August 11, 2020. At this point of the COVID-19 pandemic, Australia encountered its second wave. There had been 7,726 confirmed cases nationally by June 25, 2020 and an additional 13,833 cases by August 11, 2020, with over 13,000 of those additional cases occurring in the state of Victoria. Internal border closures and physical distancing rules were managed by individual states and territories, with borders closed between all states and many territories by July 8, 2020 (New South Wales Government, 2020), with some exemptions on a case-by-case basis (Australian Government Department of Health, 2020). Around this time, practical and emotional support for ICs may have been quite variable: Residents of capital cities were encouraged to adhere to physical distancing guidelines, and in more severely affected area residents were restricted from leaving their homes for many reasons and were unable to receive social visitors at home (July 6; Victorian State Government, 2020). Home visits were permitted for health-care workers (Australian Government, 2020), although access to residential aged-care facilities was highly variable across time and location (Australian Health Protection Principal Committee, 2020).

Data analysis strategy

Audio recordings were professionally transcribed and reviewed, then uploaded to computer-assisted qualitative data analysis software NVivo (version 12, QSR International Pty Ltd., 2018). Transcripts were inductively coded into discrete nodes by authors KT and TM. Two transcripts were cross-coded to confirm consistency in coding styles, which was considered acceptable. In thematic analysis data can be selected for analysis based on specific features or for the relevance to topic (Braun & Clarke, 2006); accordingly, nodes were only attributed to data that coders interpreted to be (1) positive experiences of caregiving, (2) coping strategies, (3) creative adaptation of care, (4) strengths of ICs, (5) benefits of caregiving during the pandemic. Additionally, as burden experienced by informal dementia caregivers is significantly predicted by instrumental activities of daily living such as shopping, housework, and meal preparation, both directly (Kim, Chang, Rose, & Kim, 2012; Reed et al., 2020) and indirectly (Kim, Noh, & Kim, 2021; Oba, Matsuoka, Kato, & Narumoto, 2018), we chose to code data broadly for the range of positive, beneficial or strength-showing IC experiences rather than restricting the data to tasks highly specific to dementia caregiving. The initial nodes were then reviewed and refined to remove duplication, and based on this refinement informational redundancy (Sandelowski, 2008) appeared to have been achieved after 25 transcripts. As one further interview had been completed by the time these 25 transcripts were coded, the remaining transcript was coded and included out of respect for that participant’s individual experiences and efforts contributing to the research. Nodes were then divided into time frame categories of before, during, and moving forward from the pandemic. In many instances, this was led by the questions asked by the interviewer, which were divided into timeframes (see Appendix A). For some points, participants drew their own comparisons across time, in which case their use of language (“I’m probably actually spending more time with her than I was before … ”, P15; “I used to … ”; P13) determined time frame allocation. Thematic analyses were conducted on the three separate time frames following methods outlined by Braun and Clarke (2006), which were reviewed by TS and adjusted with discussion and consensus.

Results

Initial coding produced 1808 nodes. These were reviewed for relevance and overlap, with 1402 nodes removed at this stage. Nodes were then separated by time frame: before (60 nodes), during (306 nodes) or moving forward (40 nodes) from the COVID-19 pandemic. These were thematically analyzed separately; results are shown in Tables 2–4. The thematic analysis of caregiving prior to COVID-19 produced two themes, shown in Table 2: (1) focusing on the PLWD, and (2) working together. Table 3 shows seven themes that emerged from the thematic analysis of providing care during the pandemic: (1) respecting personhood; (2) connecting with virtues and values; (3) improving relationships; (4) seeking and receiving support; (5) prioritizing self-care; (6) being protective and proactive; and (7) making practical changes. The themes arising from care moving forward from the COVID-19 pandemic are shown in Table 4. These were (1) strengthening commitment to PLWD, (2) looking after my own needs, and (3) considering practical requirements.

Table 2. Thematic analysis results for data coded as “before COVID-19”

Theme and Category	Example
Theme 1: Focusing on PLWD
Social activities before COVID	“ … she has one friend who’s a friend of mine, who also would go and see her, sort of like once a month. And she stopped coming as well … ” (P9)
Trying to meet PLWD’s social needs	“We were coordinating for her to meet up with certain friends where she used to live.” (P17)
Theme 2: Working Together
Family works together	“We’ve made a decision we [IC and siblings] each go once a week, and we call her every day … So once every three days one of us would go.” (P12)
Using technology to connect	“So we would get phone calls from both Hong Kong and Queensland from our boys [IC’s adult sons] to see how things are going and the grandkids would ring up as well. So the physical thing was less of an issue, just because they weren’t around.” (P25)
IC felt supported	“ … [support group] was really good, I made sure that I was available, I took time off work to attend that meeting.” (P5)
Good information and assistance from professionals and services	“I’m on the mailing list for … [psychologist] … specialising in dementia in Sydney. She sends me lots of really interesting things.” (P9)

IC = Informal caregiver; PLWD = Person living with dementia.

Table 3. Thematic analysis results for data coded as “during COVID-19”

Theme 1: Respecting Personhood
Category	Example
Respecting PLWD’s autonomy and giving choices	“It’s been more her decision … than my decision [to limit contact]. And I respect that” (P13)
Honesty with PLWD about COVID-19	“I think it’s not okay to just pretend it’s [COVID is] not happening … people [with] dementia often have very lucid moments … it would feel like a betrayal if I were to not tell her the truth” (P9)
Working with behavior covertly	“I think she got scared [of going outside] … So that day there, I said to her, because I was thinking this is really – I really need to get her out, ‘Would you like to come over to my house? Shall I take you to my house?’ And she didn’t equate that with going for a walk or going outside, luckily. So I managed, and from that point on, she was actually a little bit more agreeable to going out.” (P9)
Addressing quality of life and emotional needs	“I’m making a conscious effort to spend a bit more time [with PLWD]. Play scrabble, or look at photos, or something like that.” (P15)
Trying to provide novel activities	“YouTube’s actually pretty good, there’s all sorts of lessons people can do on any of the things they’re interested in, and it gets you away from the news.” (P19) “I’ve started him [PLWD] off knitting these beanies for something different, to get him away from the TV. And because the kids are coming up on Friday, he is madly knitting so that he can have them finished in time. I’ve been knitting them jumpers and he’s making the beanies to go with the jumpers.” (P21)
Trying to think of new ways for PLWD to have social stimulation and contact	“From that time, we started getting domestic assistance for her one hour a week, and then when the Homecare package came through, we extended it to two hours, one hour of domestic assistance and one hour of social support, and it’s the same person who does both of those things.” (P7)
Theme 2: Connecting with Virtues and Values
Category	Example
COVID-19 revealed inner strengths	“I have definitely got reserves of emotional energy that I didn’t think I had.” (P9) “What have I learned? I’ve learned that I am resilient. I know that I am quite capable.” (P12) “I think just that I guess I’m more resilient than I thought I was, and I think – I don’t know if you get more resilient as you get older, but you just learn how to cope with things. That’s probably just the biggest thing. Patience, that I guess taught me patience and I’ve discovered I have more patience than what I thought.” (P18)
Dignity, honor and satisfaction of caring	“There’s quietness about – in some ways I’m glad it’s COVID because this is an intense time where life is reduced really to caring.” (P14) [Question: Do you feel like the whole COVID-19 isolation has influenced your relationship with him [PLWD]?] “No. No. No, I don’t, no … He – he trusts me and I’m going to stick with him all the way.” (P4) “So during that time we developed a little routine and, because we do get on so well and they are lovely people, it was very clear what needed to be done and there were no other conflicts. So I just got the satisfaction of doing it I guess.” (P14)
Reframing, mind-set, meaning-making	“I think I’ve learned that what’s important in my life” (P14) “I think I’ve learned that really, I am enough. I am enough. Whatever I do, whatever I can’t do, I’m still enough.” (P22) “My priorities have changed a bit, I guess, with lots of things.” (P15) “In the sense that it helped us – the isolation is a lot easier to maintain if everyone else is isolating. And it helped us in the way that calmed down your need for external social activity. In other words, you were more driven to be outside your property or your house doing other things. Under COVID you can use that as an excuse not to do those things. Therefore you draw your social contacts and need for social contact into a smaller sphere around you. And that is a benefit I think.” (P20) “There’s those things you can just do around the house and maybe yeah – I know this sounds weird but I didn’t hate it. It was interesting to feel that pressure off … But where’s your value? The values of things, I suppose what’s important. And we’re staying healthy and safe and thinking of others … ” (P24)
Theme 3: Improving Relationships Between Families, Carers and PLWD
Category	Example
Collaborating and connecting through care	“We’ve made a decision we each go once a week, and we call her every day. But once a week – so it turns out – once a week. So it turns out to be every three days, that’s the way I was sort of planning it. So once every three days one of us would go.” (P12) “Do you know what? I think [sharing care with siblings has] probably got better in some ways [during COVID … So in a way there was always this balance, there was always this – now I guess for me, it’s quite clear what my role is. It’s been probably left to me now and that probably means that I can just get on with it more and just – it’s more informative than trying to share it out and stepping on people’s toes and the roles not being defined. So the role actually got more defined and I could just work on it without much aggro [aggression] and it’s probably improved, I’d have to probably say, just I haven’t got aggro.” (P14)
Finding new ways to connect	“So twice a week I write him a letter and in the letter I’ll put biscuits or chocolates or a piece of cake, et cetera, and then I go up – at the nursing home they’ve got a – a container and you put the stuff in the container and it’s distributed some time.” (P4)
PLWD and IC’s relationship deepened through increased contact during COVID-19	“I suppose that’s the biggest thing that I’ve learned is that actually I really enjoy my relationship with them … And COVID forced an intense relationship with them, but I wouldn’t give it up now.” (P14)
RACF have communicated well through COVID-19	“So the communication within the complex was extremely good. They were all informed as to why it was happening, that it was for their sake. There were letters; it was what was expected of you.” (P14)
RACF shows care for families and carers	“And they also have employed someone as a carer go-between sort of, so we can give her a call any time. So I made a couple of calls to find out about things COVID-wise, yeah.” (P1)
Theme 4: Seeking and Receiving Support
Category	Example
Delegation	“ … it’s also been great to be able to hand out jobs to the professionals as well and know they are going to be done and done to the best that they can be done for [PLWD]’s benefit.” (P23)
I feel supported by professionals and organizations	“I’ve now got great support. [PLWD]’s neurological psychiatrist has taken me onboard and Team [PLWD] as always is brilliant. The OT and the care provider. We are now getting professional helpers as well.” (P23)
I have psychosocial support	“Yes, [I had enough support to meet my needs] because I’ve got the family around me and friends. I did, I was supported, I didn’t feel lonely.” (P22)
Theme 5: Prioritizing Self-Care
Category	Example
Coping strategies	“Yes, I moved out to the farm during the COVID crisis, as part of my strategy, to get away from population centres.” (P20) “Exercise to the bejeezus. So getting out, getting out of the house at least for the hour that we’ve got these days … ” (P12)
Engaging in creative outlets	“I’m lucky I can keep myself busy because I do a lot of handicrafts. I’ve got my art and I knit and crochet and play the ukulele and do card making.” (P21)
I’ve taken up new activities	“I did get my daughter’s ukulele, but I didn’t get very far while I was doing a few lessons on there. No, I don’t know. I started a few books, did jigsaw puzzles, a few little things that – yeah.” (P24)
Staying in more has been nice	“I’m quite content with a Saturday night with my family. I don’t miss that wider group of people that probably I don’t – I have gone small and the people who are closest to me I invest in, but I’m not longing for the wider world that was pre-Covid and I’m glad everybody else’s world is small as well.” (P14)
Theme 6: Being Protective and Proactive
Category	Example
I trained professionals who should have already received it from their employers	“They sent me an e-mail to say all staff had done a … training thing on COVID. [The worker told me] ‘I haven’t started mine yet.’ And I went, ‘Well, they just sent me an email to say everyone’s done it.’ … she didn’t know how to use [a] computer, so I had to log her in and set up her account for her and her password. And then she said she did it … And then a few weeks later, she said, ‘Oh, they’ve sent me a message because I didn’t finish my module.’” (P24)
Home is the best place for [PLWD]	“Yeah, my brother was right onto to it … three weeks before anyone else had done anything, he said, ‘Just keep him home.’” (P2)
I ensured service providers held high COVID-19 restriction compliance	“ … we had a support worker come in and he had been tested and hadn’t told anybody, and of course we couldn’t have that support come the following week because he hadn’t got his results … ” (P17)
I showed strength in advocating for PLWD	“I actually wrote to them and suggested, which at the time they said they hadn’t thought about which I found weird. Very early on I said, given that you’re no longer have the face to face will you be doing online and doing phone calls as welfare checks.” (P6) “I’m like a tiger mum, like a tiger daughter. It’s kind of like the opposite.” (P6)
I need to keep [PLWD] safe	“During that period, I was very, very protective … ” (P9)
We made the tough decision to stop services for [PLWD]’s safety	“Yes. So pre-COVID, I stopped the Homecare person coming in in about probably March when it became apparent that older people were susceptible and could really suffer badly. We decided to stop that service” (P7)
Theme 7: Making Practical Changes
Category	Example
Cohabiting as a strategy for reducing COVID-19 risk	“ … if she was living with us, we could take her on drives and things, because she’d part of the family.” (P1)
COVID-19 changed caring significantly	“But my dad … basically, he picks her [PLWD] up every morning – or had been picking her up every morning prior to COVID – from the home that she was living in. And he would take her home to their home. And they would do various activities, or have lunch or whatever, and then he would take her back for dinner at night. And so the COVID thing has obviously significantly changed the way that he’s been able to see her, or care for her, or be involved in her care at all, at the minute.” (P15)
Modifying visits	“ … we would sit in the back yard or on the veranda and chat for a while. So it was shorter, less frequent visits.” (P7)
Task-focused coping	“That is probably a positive, is there will be a little bit of both, because the more I stay at home, I can put my washing on, I can do a little bit of vacuuming when I’m thinking, that actually frees up my weekends to go see Mum. Whereas at the moment I’m trying to do all of that; see Mum, go to work, drive to work, all that sort of stuff.” (P26)
Strategy, planning and logistics	“I think in some ways, and it sounds strange when you’re talking about caring for someone with dementia when there are all the constraints on you, but in some ways I think it’s the flexibility and prioritizing. Well, bad luck if I don’t get the washing down until tomorrow, it’s not getting done until tomorrow. So I think flexibility is probably the really big thing that’s become apparent and prioritizing what’s important and what’s not important.” (P14)

IC = Informal caregiver; PLWD = Person living with dementia; RACF = Residential aged care facility.

Table 4. Thematic analysis results for data coded as “moving forward”

Theme änd Category	Example
Theme 1: Strengthening commitment to PLWD
Looking after PLWD’s needs	“Ideally that [new home care assistant] would be a person in their sort of 50s or 60s who is going to come once a week and is going to fulfil two functions: one would be actually helping her with the garden, but secondly it would be someone to talk to.” (P12)
This has strengthened our relationship	“COVID forced an intense relationship with them [both parents living with dementia], but I wouldn’t give it up now.” (P14)
Relationships between IC and PC	“I felt a little bit bereft when the carers came in, but actually we chose a provider that enabled us to have a small number. And I’ve trained them up and I love those carers, the way that they care for my parents. So I can share that now with them … ” (P14)
Theme 2: Looking After My Own Needs
Ask for help	“ … just don’t be afraid to ask for help if you need it … ” (P21)
Accept help	“But the only other thing I was going to say about advice for people [caring for someone living with dementia]; is definitely to use any support services that are thrown at you.” (P15)
Practice self-care	“My advice is always, COVID or no COVID, you’ve got to look after yourself.” (P8)
Seeking empathy, validation or understanding	“I do think that whilst it’s great to have face-to-face, I do think that we could, especially because a lot of the carers are more tech-savvy these days, we could do something like [a support group] on Zoom. I think that would be really helpful, to be able to talk to other people who are in the same situation.” (P5)
Theme 3: Considering Practical Requirements
Planning, strategy and coordination	“I don’t know if [PLWD’s husband] even chose that as the way to care for mum, of going to get her every day [from RACF and take her to the family home during the pandemic]. It seemed from the outset that she’s thrived on that and that’s what she needed.” (P10)
Modes of communication and connection	“Yeah. I think some of the same strategies that we’ve done to deal with Mum, certainly we’d continue those. Such as more constant phone contact … There’s lots of interactions that we have between us as a family that we would continue, for sure.” (P17)

IC = Informal caregiver; PC = Paid caregiver; PLWD = Person living with dementia; RACF = Residential aged care facility.

Discussion

This study aimed to explore a range of aspects of caregiving by Australian informal caregivers of people living with dementia during the COVID-19 pandemic period of isolation of March – June 2020. These aspects included positive experiences of caregiving, the strengths ICs may have used to enact these strategies, and the benefits that may have arisen. Data were analyzed based on participants’ experiences of caregiving before and during the COVID-19 pandemic, with consideration of how participants would like to provide care moving forward. As ICs’ experiences of care before the pandemic have been documented extensively in existing literature (e.g., Lloyd et al., 2016); here we will use our before-pandemic findings primarily as a point of comparison to during-pandemic caregiving and hopes for care provision moving forward.

Participants’ focus when discussing care provisions prior to the pandemic was on the experiences of the PLWD and the care team surrounding them. When reviewing the interview transcripts, it became apparent that there were many instances where participants were asked about matters that related to them as a carer, such as what supports they had before the pandemic, only for the participant to answer in terms of whether the PLWD had sufficient services, or how care could be provided by everyone working together. Despite efforts, it was difficult to draw the participants’ perspectives to experiences relating to their own strengths or benefits prior to the pandemic, especially those that extended beyond their capacity to provide care; for example, having time to themselves or the opportunities for self-care. In contrast, when discussing the provision of care during the pandemic, ICs more readily identified experiences and strategies relating to them personally in the context of care provision.

When providing care during the pandemic, participants were far more elaborative in describing their caregiving experiences, and details provided by participants suggested metacognitive engagement with the acts of caring. Participants reported greater connection with their values and what was important in their lives, such as the way that they viewed themselves and the act of caregiving. Specific important strengths were identified in terms of participants’ resilience, patience and personal fortitude. While many of these strengths related to their own sense of self and how they understand themselves, ICs further reported numerous examples of care provision demonstrating strengths that related to the PLWD receiving care, and providing care under challenging circumstances. Such strengths during the pandemic included kindness and generosity, courage including advocating for the PLWD, making decisions with important consequences for PLWD’s welfare, and showing great flexibility in changing the way care was delivered and how care can be adjusted for other benefits such as increased socialization. At times, ICs noted that this yielded unexpected benefits; several participants reported gratitude for their experiences during COVID-19, which had enabled them to develop close relationships with their PLWD and other family members, and even for paid carers who provided much-needed social stimulation. All who made such comments reported that they wanted this closeness to continue.

In addition to these metacognitive elements, ICs further reported on broader behavioral approaches in care during COVID-19 compared to pre-COVID-19. These behaviors included support management and engaging in self-care strategies including exercising and taking up new hobbies, along with making creative and practical changes to care like arranging co-habitation, bundling social and paid caregiving visits to reduce visitors, and conducting visits outside. Taken together, the creativity shown in adjusting perspectives, attitudes and behaviors may constitute a form of meaning-making for these caregivers (Kapoor & Kaufman, 2020). Such willingness to adapt to challenging circumstances demonstrates caregivers’ strength of commitment in providing care to their family.

ICs provided deeper reflection on their experiences for the period of during-COVID-19 care, yet relatively brief expressions of which elements they wished to retain or what advice they would give others needing to adapt to similar situations. However, many of these recommendations were direct and spoken with clarity. ICs articulated a strengthening of commitment to the PLWD not observed in the data describing care experiences prior to COVID-19 and were emphatic about the importance of asking for and accepting help, looking after themselves in an ongoing way and seeking opportunities to connect with others in the same situation. The sequence of themes observed in this study suggests that the COVID-19 pandemic may have provided ICs an opportunity to reflect on meaning within their own lives and relationships, and ways to sustain those connections into the future. Participants noted unexpected experiences where PLWDs thrived on a change in care and expressed the desire that opportunities to thrive could be continued.

Broadly, the themes that emerged here describe some of the important positive aspects of informal caregiving. When considering the implications of this study, some of the themes such as improving relationships; self-care and especially virtues and values are consistent with Lang and Fowers (2019) descriptions of constitutive action in providing care for older people, whereby the means of human behavior is inextricable from the end, and the act of a process is at least as important as the product. Despite the many and tragic negative outcomes of the COVID-19 pandemic, one positive outcome for some of our cohort is that enforced isolation provided an opportunity for ICs to connect deeply with their PLWDs and find profound meaning in the care they provide. ICs’ consideration of opportunities for social connection by service providers employed for other means is indicative: Despite the instrumental nature of the task for which PCs are employed (e.g., help PLWD shower; clean the house) the constitutive component (providing an undirected, unmeasured opportunity for natural social stimulation with someone outside the family) clearly has value for ICs. Understanding this motivation may aid development of resources to support ICs and PLWDs, and even training programs for PCs. Such programs would be consistent with positive psychology approaches of valuing personhood and using strength-based approaches (Bernstein et al., 2020; Moniz-Cook et al., 2016; Perry & O’Connor, 2002; Seligman & Csikszentmihalyi, 2000).

Limitations

Although our sample’s experiences varied, it may be that only caregivers who were coping relatively well were able to participate, and caregivers who were simply not coping may not have volunteered their time. Similarly, caregivers who were not already engaged in programs like StepUp for Dementia Research were not represented, and therefore the views reported here may not have captured all caregivers’ experiences, especially since only family ICs (i.e., spouses and offspring) participated. Efforts were made to facilitate ease of research participation (e.g., verbal consent, verbal interview); however, previous research has discussed the ease with which convenience sampling produces bias in dementia caregiving populations (Badana, Marino, Haley, & Health, 2019). Similarly, only 25% of our participants cohabited with their family member living with dementia, meaning the experiences described here may be more readily transferred to other ICs with a PLWD living in separate accommodation.

We did not collect data on the dementia care status of the PLWDs for whom ICs provided care, which would have provided additional insight. Additional data regarding the degree of burden experienced by our participants (e.g., via the ZARIT burden interview; hours spent providing care) may have provided valuable context; however, we did not wish to impose undue burden on participants by administering questionnaires to the PLWD via Zoom, or in situations where participants could not leave their houses to mail forms to the research team. Future research in this area would benefit from such information and could consider different solutions and strategies used by caregivers based on whether they are living with the person living with dementia.

Conclusions

In this study, caregivers described that both they and their loved one’s services providers took action that respected personhood, was consistent with or revealed caregivers’ virtues and values, and improved relationships between families, caregivers and PLWD. Additionally, ICs reported seeking and receiving support, engaging in self-care and being protective and proactive which involved making a range of practical changes. The unprecedented circumstances of the COVID-19 pandemic placed many participants in situations where they identified a range of positive experiences of caregiving, unexpected personal strengths and caregiving benefits. Participants expressed strong desires to continue to use behaviors that had been adapted and adopted, with greater consideration of the need to look after themselves and strengthen their commitment to the person for whom they provide care. Consideration of these positive outcomes of care may provide insight for future research or policy seeking to help caregivers manage informal caregiving.

Clinical implications

• Enforced isolation resulted in deeper connections for some ICs and PLWDs, although caregivers struggling with restrictions may benefit from guidance in reframing their circumstances.

• COVID-19 may have provided caregivers the opportunity to identify personally adaptive ways of providing care into the future and would benefit from resources that would facilitate this care.

Acknowledgments

We are grateful for the assistance of StepUp for Dementia Research. The study recruitment was assisted through StepUp for Dementia Research, which is funded by the Australian Government Department of Health and implemented by a dedicated team at The University of Sydney.

We thank Jessie McDonald and Amanda Gellatly for collecting data for this project.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Supplementary material

Supplemental data for this article can be accessed on the publisher’s website.