The impacts of COVID-19 restrictions on care-givers of people with cognitive impairment and their support needs: a mixed-methods systematic review

Abstract

The COVID-19 pandemic and ensuing restrictions/lockdowns have caused significant physical and psychological consequences for people with cognitive impairment who are heavily dependent on their care-givers. However, little is known about the impact on care-givers, the factors that exacerbate their situation and what supports they need. The aims of this paper are threefold: (a) to examine the impact of COVID-19 physical restrictions on both formal and informal care-givers of people with cognitive impairment; (b) to identify attributing factors influencing this impact; and (c) to recognise their support needs. Further, this paper informs future research, policy and practice. Guided by the Joanna Briggs Institute framework, a systematic review was conducted using a mixed-methods convergent integrated approach. Eight databases were searched using keywords related to COVID-19 restriction, dementia care-givers, impacts and care settings, followed by a manual search. The study was limited to primary research published in English between January 2020 and December 2021. Of the 840 records identified, 30 met the inclusion criteria. Service withdrawal and social distancing has effectively led to the reprivatisation of care to the family, particularly women. Care-givers experienced negative impacts including reduced psychological wellbeing and physical health, increased care burden and financial difficulties. A number of clinical attributes and socio-demographic factors influenced the COVID-19 impact on care-givers. Consequently, counselling services, assistance with care and financial support were identified as support needs. Implementation of new support and the strengthening of existing services are recommended to enhance resilience, build capacity to support care-givers in any given situation and mitigate the effects of future outbreaks.

Introduction

People diagnosed with cognitive impairment are especially vulnerable to the COVID-19 pandemic and its negative impacts (Azevedo et al., 2021). A number of studies highlight the serious impact of the COVID-19 pandemic restrictions on people with cognitive impairment, including decline in cognition (Devita et al., 2021), worsening of behavioural and psychological symptoms (Baschi et al., 2020), decline in daily living activities (Barguilla et al., 2020) and lower quality of life (Suárez-González et al., 2021). The vulnerability of people with cognitive impairment makes them extremely dependent on formal and informal care-givers (Hanna et al., 2021). The widespread withdrawal of services and social distancing precipitated by the pandemic effectively led to the reprivatisation of care to the family (Daly, 2021), including care-givers of people with cognitive impairment. Often referred to as ‘invisible second patients’, these care-givers frequently report higher rates of care burden, social isolation and physical health issues than other care-givers (Brodaty and Donkin, 2009). Considering the essential role that care-givers play in supporting people with cognitive impairment, it is critical that effective support interventions and policies are developed and implemented to better meet the needs of family and care-givers of people with cognitive impairment, and to better prepare for future pandemic outbreaks.

COVID-19 restrictions and care-givers of people with cognitive impairment

Research pre-dating the current pandemic has demonstrated that effective interventions to support people living with cognitive impairment are very often those that are directed primarily, or in equal parts, towards their care-givers who provide essential support for their physical and psychosocial wellbeing and who facilitate their interactions with the wider world (Casafont et al., 2020; Cheng et al., 2020). During the pandemic, social isolation and reduced or altered access to formal care supports resulted in care-givers experiencing worsening physical health and mental health (Brown et al., 2020; Altieri and Santangelo, 2021; Borelli et al., 2021; Cohen et al., 2021). Care-giver fatigue and burnout, a function of social isolation and limited access to services and support, were issues of primary concern (Bacsu et al., 2021). COVID-19 restrictions have resulted in a notable increase in care-giver workload by reducing access to home care, respite care, day care programmes, health services, and support and volunteer programmes (Giebel et al., 2021a; Roach et al., 2021). The scoping review by Bacsu et al. (2021) of the experiences of people living with dementia indicated that COVID-19 restrictions created a significant burden for family and care-givers of people living with dementia. Findings from this paper highlight the need for further research that focuses on the impact of COVID-19 on care-givers of people with cognitive impairment, paying more attention to understanding their support needs. Although public health measures, including mandatory confinements and service restrictions, are now being relaxed worldwide, this research must interrogate how the pandemic has changed and challenged the way we care for care-givers to support better planning for future infectious disease outbreaks.

While care-givers of older people living with cognitive impairment were impacted significantly by the COVID-19 pandemic, synthesised literature on their burden and programmes supporting them remain limited. The rapid systematic review by Hughes et al. (2021) examined the impact of COVID-19 on the health and wellbeing of informal care-givers of people with dementia and found that COVID-19 had a negative impact on their psychological wellbeing, causing an increase in anxiety and depression. However, the review was limited in its focus on informal care-givers only and was restricted to health databases that potentially disregard studies that report on impacts beyond a strictly health focus. In the present study, we aim to synthesise evidence of the impacts of COVID-19 on both formal and informal care-givers of people with any cognitive impairments across the broader literature, including published and unpublished research and reports.

Methods

Study design

This systematic review was guided by the Joanna Briggs Institute's (JBI) Manual for Evidence Synthesis (Lizarondo et al., 2019). The PICO (Population, Interest, Context and Outcomes) format was used to refine the inclusion and exclusion criteria and the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) framework was used for reporting (Moher et al., 2009). The review consisted of four steps: record identification, screening, eligibility and final inclusion (Figure 1). Each step of the review was independently carried out by two reviewers (TNMN and BJ). Conflicts were resolved by rigorous discussion and through a consensus process with referral to a third reviewer (LB) when required. All reviewers were involved in synthesising results. The population of interest was adult care-givers of people with cognitive impairment, including paid, unpaid and family care-givers. The phenomenon of interest was restrictions associated with public health measures triggered by the COVID-19 pandemic in any setting including residential aged care, long-term care, respite care, home care, and community and day care centres in a global context. Outcomes of interest were any consequence reported including social, psychological, physical or financial.

Figure 1. Article search and selection process using the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analysis) framework (Moher et al., 2009).

Search strategy

Our aim was to conduct a comprehensive search to identify relevant published and unpublished research articles. For research articles, six electronic databases were searched including: Cumulative Index of Nursing and Allied Health (CINAHL with full text), MEDLINE, PsycINFO, Embase, Scopus and PubMed. Another two databases, OpenGrey and MedNar, were searched for unpublished studies. Search engines Google Scholar and Google, as well as the reference list of all studies selected for critical appraisal, were manually searched for additional relevant studies. A preliminary search using basic search keywords including ‘Covid-19’, ‘impact’, ‘support need*’, ‘carer*’ and ‘cognitive impairment*’ was conducted in MEDLINE and CINAHL to identity relevant literature. Titles and abstracts of identified studies were screened to develop a full search strategy for the review. Initial search in MEDLINE used key search terms including: AB carers, AB caregivers, AB family members, AB relatives, AB volunteers, dementia, cognitive impair*, Alzheimer*, AB impact, AB influence, AB effect*, AB perceived support, AB perceived need*, AB support need*, MH covid-19, MH coronavirus. Inclusion and exclusion criteria are provided in Table 1.

Table 1. Inclusion and exclusion criteria

Study selection and quality appraisal

Identified studies were imported into and managed by EndNote x.X9 software (Clarivate, Philadelphia, PA, https://endnote.com/), and titles and abstracts were screened. Studies identified as potentially eligible for inclusion were then imported into the JBI System for the Unified Management Assessment and Review of Information package (JBI SUMARI) and full-text articles were reviewed. Articles that met the inclusion criteria were critically appraised for quality of study methodology and strength of analysis using the JBI Critical Appraisal Checklist appropriate for quantitative and qualitative research studies by two independent researchers (TNMN and BJ) (Tables S1 and S2 in the online supplementary material). Regular meetings were held between them to discuss and resolve any disagreement. Thirty studies that met the inclusion criteria were appraised for quality and all were included.

Quality of the included studies

Although the 30 included studies met inclusion requirements, there were several limitations that are worth noting, mainly relating to research design and research process. In qualitative studies, information that reported the philosophical stances and influence of researchers on the research process remained vague and limited. Some quantitative studies included only a small number of participants, e.g. three quantitative studies included fewer than 50 care-giver participants (Borges-Machado et al., 2020; Hwang et al., 2021; Carbone et al., 2021b). Furthermore, only five studies included some form of pre-pandemic measurement (Borges-Machado et al., 2020; Giebel et al., 2021b; Altieri and Santangelo, 2021; Hwang et al., 2021; Carbone et al., 2021b). This lack of baseline data makes it challenging to provide a rigorous or comprehensive understanding of the impact of the pandemic. This said, the sudden and unanticipated nature of the COVID-19 pandemic meant that most studies were unable to collect pre-pandemic measures.

Data extraction, analysis and synthesis

Data relating to details about the year and geographic place of study conducted, study design, the demographics of study population, context, data collection methods, outcomes measured, reported effects, a summary of the main findings, author conclusions and study limitations were extracted using the JBI data extraction tool. Extracted data were analysed following a convergent integrated approach that involved data transformation to allow us to combine quantitative and qualitative data for narrative synthesis (Hong et al., 2017). In this approach, qualitative data were extracted verbatim and quantitative data were converted into textual descriptions or qualitative form described as ‘qualitised’. The qualitative and qualitised data were then synthesised and analysed to identify key themes (Stern et al., 2020).

Results

Study characteristics

The combined searches yielded 840 records. After removal of 324 duplicate records, and title and abstract screening, a total of 33 articles were retrieved for full-text review (Figure 1). Of these, three were excluded: one for not comprising primary research and two for not measuring outcomes for care-givers.

Characteristics of each study are described in Table 2. The majority of the studies (N = 20) involved quantitative research methods using cross-sectional survey questionnaires, nine utilised qualitative research methods and one was a mixed-methods study. The studies were undertaken across 16 countries including Italy (N = 5), the United Kingdom (UK) (N = 4), the United States of America (N = 3), Greece (N = 2), Brazil (N = 2), China (N = 2), India (N = 2), France (N = 2), Spain (N = 2), Poland (N = 2), Portugal (N = 1), Germany (N = 1), Finland (N = 1) and Canada (N = 1). Most studies were from the disciplines of medical and health sciences (N = 16), followed by neuroscience (N = 9), psychology (N = 3), psychiatry (N = 1) and medical sociology (N = 1).

Table 2. Study characteristics

Notes: UK: United Kingdom. USA: United States of America.

There were a total 13,243 care-giver participants involved in the 30 included studies. Studies undertaken in India and China tended to have a larger sample size. In most studies (N = 27) participants cared for people at home. One study focused on family care-givers of people living in residential care facilities (Paananen et al., 2021), and two studies included both care-givers of people living at home and in residential care facilities (Giebel et al., 2021a; Macchi et al., 2021).

Demographic information about participants were variously reported across all studies with some not reporting this information at all. The care-givers in the included studies were overwhelmingly unpaid informal care-givers who were family members and mostly female, indicating a dearth of research on the impact of the pandemic on paid care-givers of people with cognitive impairment. The most common relationship between the care-givers and care recipients was either spouse or adult child. Only two studies (Yuan et al., 2021; Carbone et al., 2021b) included a small number of paid care-givers in addition to family care-givers, although these studies did not report separate findings of informal and formal care-givers' outcomes. Care-givers in studies conducted in low-income countries had lower educational and socio-economic backgrounds compared to those in studies conducted in high-income countries. The care recipients in the studies were mainly people with dementia. Outcome measurements varied in the 21 quantitative studies, including care burden, emotional distress, level of anxiety and depression, daily living activities such as sleep patterns and eating patterns, care-related quality of life and social isolation.

Findings of the review

The overarching finding of the review was that care-givers (the majority being unpaid family care-givers) described experiencing significant negative impact in caring for people with cognitive impairment during the COVID-19 pandemic. Our analysis indicates that care-givers experienced overlapping forms of increased negative impact on their (a) psychological wellbeing, (b) care burden, (c) physical health, and (d) financial difficulties (Table 3). Socio-demographic and clinical attributes compounded the impact on care-givers, and various supports were sought to mitigate the consequence of the COVID-19 pandemic and to enhance their ability to provide care.

Table 3. Themes and sub-themes of the findings

Impact on psychological wellbeing

The literature makes clear that mandatory confinement during the COVID-19 pandemic period had a significant negative impact on care-givers' psychological wellbeing in the form of emotional distress, level of anxiety, depression, fear, shame, embarrassment and social isolation. The psychological impact most frequently reported by care-givers was anxiety and stress (Carpinelli Mazzi et al., 2020; Tsapanou et al., 2020; Vaitheswaran et al., 2020; Azevedo et al., 2021; Borelli et al., 2021; Budnick et al., 2021; Carcavilla et al., 2021; Hanna et al., 2021; Hwang et al., 2021; Li et al., 2021; Losada et al., 2022; Mackowiak et al., 2021; Paananen et al., 2021; Pongan et al., 2021; Rainero et al., 2021; Roach et al., 2021; Rusowicz et al., 2021; Zucca et al., 2021; Carbone et al., 2021b). Care-givers attributed several different factors to their anxiety and stress, including feelings of uncertainty and loss of control, as well as the deterioration of neuropsychiatric symptoms of the person they were caring for, and difficulty following public health regulations.

One informal care-giver looking after a parent with dementia in the UK expressed her uncertainty as follows:

We have no control over it [COVID-19 lockdowns], that's one thing and there seems to be no end to it, when we thought there was an end like I say when we had that little bit of hope that lockdown was easing then [area name] was put back into lockdown … we don't know when that's going to end and then will it actually end or will they continue it. (Hanna et al., 2021: 6)

Many care-givers felt a heightened sense of responsibility due to the risks related to COVID-19. They were aware of the vulnerability of their care recipients in relation to COVID-19 and afraid of passing the virus on to their care recipient. As one study participant noted:

I'm having to get close to her whilst showering her and I'm very conscious of that all the time… not passing anything on and there's been a couple of occasions where when I've gone to help mum, she's then just grabbed hold of me and hugged me. (Giebel et al., 2021a: 1285)

Care-givers were also worried and anxious about becoming sick themselves and were deeply concerned about who would look after their loved one if they became too unwell to continue their care-giving responsibilities (Hanna et al., 2021; Rising et al., 2022; Rusowicz et al., 2021). One care-giver described:

My biggest fear would be if something happens to me, only because if it happens to me it's a big mess. (Rising et al., 2022: 5)

Care-givers expressed concerns about the loss of important social care programmes, support services and routine medical appointments for their care recipient that were cancelled due to COVID-19 restrictions. They frequently expressed their concern that in the absence of those programmes and medical appointments, their care recipients' cognitive ability, health and general wellbeing were deteriorating, which further increased the care-givers' anxiety (Giebel et al., 2021a; Mackowiak et al., 2021; Paananen et al., 2021; Rusowicz et al., 2021):

Literally, very soon after the day care facility was closed, my mother started to deteriorate in her health, especially the mental one. Her behaviours started to change, a lot of problems grew and for me it was a very big problem… (Mackowiak et al., 2021: 6)

Family members caring for people with cognitive impairment living in residential facilities were similarly anxious about the health and wellbeing of their loved ones, as many perceived that their health condition declined rapidly over periods of extended lockdown and social isolation (Giebel et al., 2021a; Paananen et al., 2021). These care-givers experienced unique stressors and negative emotions in navigating how to communicate with facilities and maintain connection to their loved ones during visitor restrictions (Giebel et al., 2021a; Paananen et al., 2021):

I don't know how to cope with this. Or how my mother copes with this. That is what we fear the most, that we cannot be close to her in her last days. If I may say, I have a constant fear that my mother will die. And I always keep my cell phone close by, mhm. (Paananen et al., 2021: 8)

Care-givers further described their anxiety when leaving their house with care recipients who could not understand or follow public health regulations and health warnings. For example, one care-giver in Canada shared her concern about completing essential errands outside the home:

Yeah, it's so difficult … That taught me a lesson. So we went out. I couldn't leave it, so I have to go pick it up today. And that's frustrating because it gives you more anxiety of just leaving the house. I don't have trouble leaving the house but if [person with dementia] comes with me he has to wait in the car. And then, it was just really stupid of me. I said my brain's going under too, a huge thing. Nothing's in sync. (Roach et al., 2021: 2016)

Care-givers described how these experiences led to feelings of fear, embarrassment and shame when going out in public with their care recipients during lockdowns. One care-giver reported:

She [person with dementia] said she wanted to go to this supermarket that she likes … she kept wanting to push closer to the lady in the front … I said no mum you can't do that you have to stay 2 meters behind the person in front of you … I said and you need to follow the arrows around the supermarket. (Hanna et al., 2021: 5)

Care-givers also reported high levels of depression during the COVID-19 pandemic (Altieri and Santangelo, 2021; Borelli et al., 2021; Hanna et al., 2021; Li et al., 2021; Macchi et al., 2021; Pongan et al., 2021; Rainero et al., 2021; Zucca et al., 2021). They reported increased use of medications including antidepressants, to tackle their mental health issues. One care-giver reported:

The psychiatrist, they gave me some antidepressants … I did not want to take it but I felt as though I was going downhill a little bit, it's that I felt so isolated is the better way of putting it, I wasn't seeing another human face at all, no direct contact with anybody, not even a window cleaner. Crazy I know, everything stopped instantly it was like turning the light off it was that quick wasn't it when you think about it. (Hanna et al., 2021: 4)

Many care-givers described feeling lonely and isolated from friends and family who previously provided both socialisation and support (Azevedo et al., 2021; Carcavilla et al., 2021; Hanna et al., 2021; Mackowiak et al., 2021; Rajagopalan et al., 2021). One care-giver explained:

I feel a sense of isolation and lack of support and honestly, I think I am out of words to even explain my situation. (Rajagopalan et al., 2021: 13)

Increased care burden

Increased care burden was identified in 19 studies as a profound impact of COVID-19 on care-givers of people with cognitive impairment (Borges-Machado et al., 2020; Boutoleau-Bretonnière et al., 2020; Tsapanou et al., 2020; Alexopoulos et al., 2021; Azevedo et al., 2021; Borelli et al., 2021; Budnick et al., 2021; Carcavilla et al., 2021; Hanna et al., 2021; Hwang et al., 2021; Macchi et al., 2021; Mackowiak et al., 2021; Pongan et al., 2021; Rainero et al., 2021; Rising et al., 2022; Rusowicz et al., 2021; Sriram et al., 2021; Yuan et al., 2021). During lockdowns care-givers were unable to access formal care services such as dementia day care centres that were previously relied upon (Giebel et al., 2021b; Vaitheswaran et al., 2020; Budnick et al., 2021; Macchi et al., 2021; Mackowiak et al., 2021):

What I felt when they closed the day care facility? It was stress. And it still is. We had to organize something that worked well again. I didn't know when it would end, how we should work with mum. (Mackowiak et al., 2021: 5)

Additionally, many care-givers reported that they lost the informal support provided by other family members or friends due to lockdowns (Carpinelli Mazzi et al., 2020; Hanna et al., 2021). One care-giver shared:

She [sister] would have her over for the afternoon about the same times, and we had a cousin who we used to go Sunday dinner to once a month, but unfortunately that's all gone by the by. (Sriram et al., 2021: 7)

This loss of support from both professional providers and other family members contributed to increased care-giver burden and resulted in a significant increase in the amount of time care-givers spent providing care and assisting with the care recipient's activities of daily living. One care-giver described that ‘all of his other people are gone so the whole burden is on me’ (Rising et al., 2022: 34), and another shared their frustration:

I lost all my support. All of it, except for few hours. So I was just left to just manage this on my own. Yeah … you know, I, going from, you know, 24 hours of day program and 35 hours of home care to nothing. They stripped all my support away. (Roach et al., 2021: 2017)

The burden of care-giving and coping with heavy care duties contributed to care-givers feeling despair and hopelessness:

There's no method to cope. I can't ask people, family to come and help me. I can't, there has been nothing I can do. No, I have not found anything for me personally that has been good about it. I have not been able to work. I have no socialization. I'm just left to cope on my own. (Roach et al., 2021: 2013)

Many care-givers reported that increased care burden resulted in notable disruptions in their daily routine and activities (Borelli et al., 2021; Mackowiak et al., 2021), including neglecting self-care (Rainero et al., 2021) and reduced healthy-eating habits (Borelli et al., 2021; Hwang et al., 2021).

Impact on physical health

Care-givers experienced impacts on their general health and physical wellbeing during COVID-19 lockdowns, including developing their own health problems (Azevedo et al., 2021; Borelli et al., 2021; Hwang et al., 2021; Mackowiak et al., 2021; Rusowicz et al., 2021). Many care-givers reported difficulties in accessing medical services for both their existing and new health problems as many of their medical appointments were cancelled due to social restrictions and lockdowns (Carpinelli Mazzi et al., 2020; Vaitheswaran et al., 2020; Azevedo et al., 2021; Borelli et al., 2021; Mackowiak et al., 2021). As one care-giver said:

[I was] unable to access my eye doctor as I have retinal tears that need regular reviews; also unable to access my dentist. (Vaitheswaran et al., 2020: 1189)

Lockdowns and increased care-giving responsibilities further restricted care-givers' physical exercise (Vaitheswaran et al., 2020; Hwang et al., 2021; Sriram et al., 2021). As one care-giver explained:

I get what I need [exercise], but I have not been able to get as much since March, obviously. (Sriram et al., 2021: 5)

Many care-givers also reported other health impacts, including a general decline in physical health (Azevedo et al., 2021; Hwang et al., 2021; Rusowicz et al., 2021), weight gain (Borelli et al., 2021), difficulty sleeping (Azevedo et al., 2021; Carcavilla et al., 2021; Li et al., 2021) and increased use of sleep medication (Borelli et al., 2021; Mackowiak et al., 2021).

Financial difficulties

Financial concerns including decreased income or loss of employment was another factor that caused anxiety among care-givers (Vaitheswaran et al., 2020; Hwang et al., 2021; Losada et al., 2022; Rusowicz et al., 2021). One participant in a study exploring the need for support among care-givers of people with dementia in India shared:

I am not able to go to work. So there has been a loss in income. (Vaitheswaran et al., 2020: 1189)

Additionally, those who worked from home due to the pandemic reported difficulties in balancing care-giving responsibilities while working from home, especially when the care recipient's behaviours were disruptive (Borges-Machado et al., 2020; Vaitheswaran et al., 2020; Rajagopalan et al., 2021). One care-giver described:

He comes and bangs on the door when I am in a call as I am working from home now. He doesn't like the doors being closed. (Vaitheswaran et al., 2020: 1189)

Others worried about how they would return to work if formal care services continued to be unavailable:

Yeah, like I am scheduled to start going back to work again and no one, no one can tell me what I'm supposed to do with my spouse, because the day programs are no longer active. So, for 24 hours a week now I don't know what I'm supposed to do. (Roach et al., 2021: 2017)

Socio-demographic and clinical attributes and their impact

The included studies in this review identified socio-demographic and clinical attributes that influenced the impact of COVID-19 on care-givers at various levels. The level of negative psychological symptoms and care burden experienced by care-givers varied consistently with the level of cognitive impairment of care recipients (Boutoleau-Bretonnière et al., 2020; Giebel et al., 2021b; Alexopoulos et al., 2021; Altieri and Santangelo, 2021; Azevedo et al., 2021; Borelli et al., 2021; Pongan et al., 2021; Rajagopalan et al., 2021; Yuan et al., 2021; Zucca et al., 2021). Care-givers providing care for people with moderate and severe cognitive impairment reported higher levels of psychological and physical impacts. Level of care burden was also associated with the level of, and changes to, behavioural symptoms in care recipients with dementia (Borges-Machado et al., 2020; Boutoleau-Bretonnière et al., 2020; Pongan et al., 2021; Rajagopalan et al., 2021). In one study, the length of time spent in isolation was also associated with higher levels of anxiety and depression (Carpinelli Mazzi et al., 2020).

Gender was another factor that was found to be associated with the level of COVID-19-related psychological impact (Carpinelli Mazzi et al., 2020; Zucca et al., 2021; Carbone et al., 2021b). However, the association between these two factors varied among studies. While female care-givers in a study measuring the impact of COVID-19 on care-giver distress among 35 care-givers in Italy reported lower levels of distress compared to their male counterparts (Carbone et al., 2021b), female care-givers in other studies also conducted in Italy (Carpinelli Mazzi et al., 2020; Zucca et al., 2021) reported higher levels of anxiety, stress and depression. Care-givers' age and level of education were also associated with the level of impact of COVID-19 restrictions. Higher levels of education were associated with lower levels of anxiety and depression (Carpinelli Mazzi et al., 2020; Zucca et al., 2021). One study reported that care-givers who were under 70 reported higher levels of psychological impact (Zucca et al., 2021).

Although some studies reported that the level of resilience in care-givers was associated with the levels of psychological impact they experienced, the direction of this association varied between studies. One study reported that care-givers with higher resilience levels reported a more limited worsening of care-giver distress over lockdown (Carbone et al., 2021b), however, another study found that high resilience levels was associated with a higher increase in anxiety (Altieri and Santangelo, 2021).

Care-giver support needs

Even though care-givers experienced significant negative impacts of COVID-19 while providing care for people with cognitive impairment, the literature on their support needs remains limited. Only four studies explicitly identified the support that care-givers required (Vaitheswaran et al., 2020; Carcavilla et al., 2021; Mackowiak et al., 2021; Rusowicz et al., 2021). The most frequently reported support need was educational information and professional guidance on how to provide care for people with cognitive impairment during lockdowns, including advice on managing dementia-related behavioural symptoms, activities to keep care recipients entertained and engaged at home, and strategies to assist care recipients in following public health restrictions (Vaitheswaran et al., 2020; Mackowiak et al., 2021; Rusowicz et al., 2021). For example, one care-giver suggested ‘some means of engaging my mother will be very useful’ (Vaitheswaran et al., 2020: 1190). This includes a need for medical consultations with dementia specalists and other providers who are available to provide support even during lockdowns: ‘keeping in contact and being available for support and help’ (Vaitheswaran et al., 2020: 1190). Care-givers also expressed the need for counselling or psychological services to better support their own mental health and wellbeing (Rusowicz et al., 2021). In one study, participants advocated for online support groups for care-givers: ‘it [on-line support for carers via communicators such as Zoom, Skype] is important’ (Mackowiak et al., 2021: 7).

Care-givers expressed a need for support with providing care at home, particularly during work-day hours, or to allow them to complete essential tasks or respite and self-care activities (Vaitheswaran et al., 2020; Carcavilla et al., 2021; Mackowiak et al., 2021). They expressed a need for back-up care-givers who could assist with or take over care-giving responsibilities if they became unwell or infected with COVID-19 (Rusowicz et al., 2021).

Many care-givers reported problems due to lockdown restrictions, and some wished that authorities would have been more flexible in implementing policies or allowing exemptions for people with cognitive impairment (Vaitheswaran et al., 2020; Carcavilla et al., 2021). For example, one care-giver suggested, ‘allow these patients to take walks outside home with their caregivers without time restriction’ (Carcavilla et al., 2021: 535). Additionally, a large proportion of care-givers reported reduced income and accordingly expressed their need for financial support (Rusowicz et al., 2021) or for the cost of medications to be subsidised (Vaitheswaran et al., 2020). Care-givers also reported long-term support needs, including more trained home care support workers and improved social awareness about dementia:

The police did not permit us to travel to our village where my father would be more settled. They did not know what dementia was. This is not just a problem for now. Even after the pandemic, something should be done to make them aware of dementia. (Vaitheswaran et al., 2020: 1191)

Following the presentation of COVID-19 impacts on care-givers, and the services they required, we now provide a summary of recommendations of policy and practices synthesised from the included studies.

Recommendations in the reviewed articles

Authors in the reviewed studies provided a variety of policy recommendations, with most actively calling for policy makers and health-care providers to better support care-givers with targeted responses. They advocated for improving the capacity to provide flexible and bespoke support solutions for informal care-givers, including further developing the provision of remote support and virtual medicine, support in utilising telehealth services, and flexible mental and social support for both care-givers and their care recipients with cognitive impairment (Giebel et al., 2021a; Mackowiak et al., 2021; Roach et al., 2021; Sriram et al., 2021). Dementia day care centres and other service providers should be encouraged and supported to develop contingency plans so that they may continue to provide services and support in some capacity during future outbreaks or other crises (Borges-Machado et al., 2020). Another key recommendation was that existing support structures and services should be maintained and strengthened in a ‘resilience-focused’ approach to build capacity to support care-givers even during normal times, to help mitigate the effects of future outbreaks (Vaitheswaran et al., 2020; Carcavilla et al., 2021).

Discussion

To our knowledge, this is the first comprehensive systematic review that takes an in-depth look at the lived experience of care-givers of people with cognitive impairment during the COVID-19 pandemic. Other systematic reviews were conducted to examine the impact of COVID-19 on care-givers (Aledeh and Adam, 2020; Hughes et al., 2021; Giebel et al., 2022), however, these studies were either rapid review, and/or illness specific, e.g. dementia only, or focused solely on mental health and wellbeing. Our review includes care-givers of people with any cognitive impairment and examines the impact of COVID-19 restrictions and lockdowns on psychological and mental wellbeing, burden of care, physical health and financial difficulties. This review also considers the factors associated with these impacts, the service responses desired by the care-givers and provides a synthesis of policy recommendations in the reviewed articles.

Findings from this review demonstrate that there is limited research on the impact of COVID-19 lockdown experienced by care-givers of people with cognitive impairment, and that most of this research focuses on informal, unpaid family care-givers. Our review found that the impacts on care-givers are complex and often overlapping, and our findings resonate with the results of another study (Muldrew et al., 2022) to reveal that the COVID-19 pandemic not only heightened the care-givers' pre-existing struggles, but also added extra challenges for this population. The COVID-19 pandemic, physical distancing restrictions and subsequent lockdowns resulted in severe psychological consequences, which were also reported in another systematic review that examined the mental health of care-givers of people with dementia during the COVID-19 lockdown (Carbone et al., 2021a). Similar to our study, this review found that anxiety, depression, stress and lack of control were the most frequently reported mental health consequences. Psychological and mental health outcomes were compounded by other challenges which were unique to these care-givers, as people with cognitive impairment are particularly vulnerable to COVID-19 and are at a heightened risk of severe outcomes after contracting the virus, therefore requiring constant care-giver support (Iodice et al., 2021). Furthermore, accessing social and health-care services are essential for these patients and for their family care-givers (Aamir et al., 2021; Giebel et al., 2022). Closure of social and health-care support services during COVID-19 lockdowns resulted in further deterioration of care-givers' psychological and mental health (Giebel et al., 2021a, 2022; Carbone et al., 2021b).

Reduced social and health-care resources and increased isolation during the COVID-19 pandemic further resulted in heavy care responsibilities for family care-givers, as found in this review. The included studies mostly focused on psychological health rather than physical health. However, analysis showed that the negative psychological consequence coupled with increased care responsibilities also had an impact on care-givers' physical health. The impact of care responsibilities has been termed ‘care-giver burden’ throughout the literature included in this review. Care-giver burden is a multi-dimensional concept consisting of emotional, physical, social and/or financial burdens that care-givers experience when caring for their loved ones with cognitive impairment (Maggio et al., 2021). Indeed, the care-givers in these studies reported neglecting self-care, ignoring their own health, exercising less due to increased care responsibilities and, consequently, experiencing declines in their own health and wellbeing.

This increased care burden was also clearly associated with the cessation of (or reduction in) formal care support services (like day care centres and regular medical appointments) as well as the loss of informal support networks. This highlights the need for governments, policy makers and service providers to find creative ways to continue providing support to informal care-givers, even during periods of infectious disease outbreak and lockdown. Furthermore, many care-givers expressed specific and significant anxiety about the possibility of contracting COVID-19 themselves, and being unable to provide adequate care for their care recipient. With respite centres and other paid care-giving services unavailable during lockdowns, this situation poses a particularly critical issue that must be addressed in future lockdowns/public health outbreaks. The impacts of service closures have been devastating for many families and policies need to balance infection risks with the benefit of care and social support measures. Diminished contact with family and friends who would normally provide regular informal respite and emotional and moral support to care-givers has a critical impact on care-giver burden, but is under-examined in the extant literature.

Additionally, several studies mentioned the significant stress and difficulty experienced by care-givers in relation to following public health advice, especially when care recipients did not sufficiently understand COVID-19-related information or the need to change their regular routines (Budnick et al., 2021). In some studies, care-givers reported that public health advice felt impractical for the people for whom they were caring (Vaitheswaran et al., 2020; Carcavilla et al., 2021). This is also reflected in the wider literature, which has acknowledged that cognitive impairment and intellectual disability can impact a person's ability to understand and implement public health measures such as handwashing, social distancing and isolation, therefore placing additional demands on care-givers to monitor their behaviour (Courtenay and Perera, 2020). Policy responses to future public health outbreaks should consider the needs of this important group and ways to minimise any increase in burden of care. Although not explicit, evident in the research is the critical role care-givers play as advocates for people with cognitive impairment, including highlighting how important it is for care-givers' needs to be recognised, as these impact on the quality of care provided to recipients.

Financial difficulties among care-givers of people with cognitive decline were also reported in the wider literature (e.g. Kostyál et al., 2021; Masoud et al., 2022), particularly in terms of income loss, job loss, switching to part-time work, working from home (while caring for a person with cognitive impairment) or taking unpaid care leave. It is essential that policy makers implement strategies to alleviate the financial burden placed upon care-givers who are forced to reduce or leave their employment in order to care for others, particularly in times of crisis when regular support services are unavailable. The severity of impact on any of the issues on care-givers between lower-income and higher-income countries could not be examined in this review due to the limited number of studies from lower- to middle-income countries, with just four studies reporting on India (Vaitheswaran et al., 2020; Rajagopalan et al., 2021) and Brazil (Azevedo et al., 2021; Borelli et al., 2021).

Two factors were found to be associated with care-giver impact during COVID-19 confinements, namely medical/clinical conditions of the care recipients and socio-demographic factors of the care-givers. Care-givers providing care for people with moderate to severe cognitive impairment experienced higher levels of psychological and physical difficulties. Similarly, care-givers also experienced increased care burden when coping with severe or increasing behavioural and psychological symptoms of the care recipient. While this finding is new in the COVID-19 context, it is unsurprising and aligns with research conducted prior to the pandemic, which found that care-giving stress increased with the level of cognitive impairment or other disabilities in general (Kim, 2017).

Consistent with findings from a previous review (Hughes et al., 2021), care-givers with lower levels of educational attainment are at greater risk of high levels of care burden. The association between care-givers' level of resilience, their psychological state and their care burden during COVID-19 lockdowns is inconsistent with previous studies and remains unclear. Although high resilience is considered a protective factor against care-givers' depression, anxiety and care burden (Ruisoto et al., 2020; McKenna et al., 2022), in contrast, Altieri and Santangelo (2021) found care-givers with higher resilience experienced a significant increase in anxiety level, but a decrease in care burden. High resilience may not protect care-givers from adverse outcomes during exceptional situations like the COVID-19 pandemic. Specific interventions for care-givers of people with cognitive impairment are therefore required, regardless of their levels of resilience.

Research limitations and recommendations for future studies and policy implementation

The inclusion of papers sourced from a wide variety of databases, including those that do not focus primarily on health or medical research, ensures that this review is not limited to findings from a narrow range of disciplines, and instead actively incorporates research from non-health fields, including social science perspectives and related applied fields. This review is limited in its exclusion of care-givers aged under 18 years. Young care-givers likely have unique experiences, and their support needs may differ from those discussed in this review, and this is an important direction for future research. Excluding articles published in languages other than English also limited the generalisability of our findings.

Many of the studies included in this review, while providing some important insights on the experiences of care-givers, predominantly considered impacts on care recipients, with minimal investigation of the impacts on their care-givers. Similarly, sample size varied across the included studies, impacting the generalisability of findings. There are also limited studies investigating the mediating factors that may have contributed to the impact of COVID-19 restrictions on care-givers and their support needs. Studies were mostly (N = 20) undertaken in European countries, with a small number in North America (N = 4), South America (N = 2) and Asia (N = 4). Current research on the impact of COVID-19 restrictions and lockdowns on care-givers therefore does not adequately represent populations from diverse cultural and geographical background. Differences in the experiences of care-givers from different linguistic and cultural backgrounds, socio-economic status, age and gender should be considered in designing policies to meet their needs.

The majority (N = 26) of studies on this topic focused on family care-givers of people with cognitive impairment living at home in the community. Although two studies in this review also included participants who were paid care-givers (Yuan et al., 2021; Carbone et al., 2021b) and two studies included family care-givers of people living in residential facilities (Giebel et al., 2021a; Macchi et al., 2021) in addition to family care-givers of people living at home, these studies reported aggregated results and did not distinguish outcomes between different types of care-givers. This makes it difficult to understand and report the unique experiences of care-giving in different contexts. The effects on and support required by family care-givers providing care at home are likely different to that of both paid care-givers and family care-givers of people who live in residential facilities, and future research should prioritise reporting disaggregated results for different types of care-givers. The experiences of formal and informal care-givers may vary greatly (Modi et al., 2021), yet there has been limited research that compares the impacts of COVID-19 on these different populations. Investigating and comparing the impact of COVID-19 on these two groups is necessary to better understand their respective needs during emergency public health responses to infectious disease outbreaks. Although policy attention has traditionally focused on supporting formal paid care-givers or health-care workers rather than supporting family care-givers, researchers have recommended that policy makers prioritise better responses to support family care-givers (Lorenz-Dant and Comas-Herrera, 2021; Dawson and Comas-Herrera, 2022). The impact of COVID-19 lockdowns on family care-givers of people with cognitive impairment living in residential care facilities continues to be a significant gap in current literature.

Implicit in the findings is the role played by informal care-givers as the safety net for people with cognitive impairment when other social care and social support services are unavailable. This critical role in turn results in adverse consequences for care-givers who experience stress and increased care burden. Recommendations identified in the reviewed studies that would benefit care-givers include: more services to support the physical health and psychological wellbeing of care-givers, particularly those caring for people with moderate to severe cognitive impairment (Giebel et al., 2021a; Roach et al., 2021; Sriram et al., 2021), including counselling support that should be made more widely available (Rusowicz et al., 2021); funding for social care (Borges-Machado et al., 2020; Vaitheswaran et al., 2020; Carcavilla et al., 2021); as well as state financial benefits for care-givers (Vaitheswaran et al., 2020; Rusowicz et al., 2021). These recommendations in combination may help address the issues of anxiety, financial stress and access to formal care-givers to limit care burden and burnout, and ensure care-givers have more time for respite and self-care. These recommendations have application at all times, not only during public health measures that respond to pandemics or other outbreaks of infectious disease.

Conclusion

Despite the critical role that care-givers play in supporting loved ones living with dementia and other forms of cognitive impairment, they have most often appeared as secondary figures in research conducted since the onset of the pandemic. This systematic review aims to consolidate knowledge and increase understanding about the impact of COVID-19 restrictions and confinement on care-givers and their support needs. Daly (2021) notes that families and informal care-givers have absorbed the costs of the adjustments required by the pandemic, including for both childcare and eldercare, which were effectively ‘reprivatized to the family’ (Daly, 2021: 115; see also Giebel et al., 2021a). She highlights the risks of ‘depletion’ (Rai et al., 2014) in this context, where ‘resource outflows exceed resource inflows over a threshold of sustainability, making for a harmful situation for those engaged in this work’ (Daly, 2021: 116). Understanding the impacts on care-givers is crucial to the development and implementation of appropriate and effective support interventions and policies to better meet the needs of family and care-givers of people with cognitive impairment, and to prepare for future pandemic outbreaks. Given the increasing life expectancy across the globe, combined with increasing rates of dementia, the care burden of care-givers of people with cognitive impairment is certain to be an important health issue for the future, even in non-pandemic times. Therefore, the role of both formal and informal supports and services for care-givers of people with cognitive impairment requires serious attention from scholars, practitioners and policy makers.