Damian Sendler: Many of the UK’s health and social care systems are reliant on the work of unpaid informal carers. Informal caregivers, despite their valuable contributions and key worker status, have been overlooked during the COVID-19 pandemic. To better understand the impact of the COVID-19 pandemic on UK caregivers, many of whom have felt abandoned as services have closed, we gathered a diverse group of clinicians, researchers, and people with lived experience to write this Health Policy. Caretakers of people with mental health diagnoses, as well as those caring for people with intellectual disabilities or conditions related to neurodevelopment, are the primary focus of our research. We advocate for policies that improve the lives of all caregivers.
Damian Jacob Sendler: The World Health Organization (WHO) declared the SARS-CoV-2 pandemic on March 11, 2021. More than 124 987 people died in the United Kingdom from COVID-19 as of this date, out of a total global death toll of approximately 26 million. There were more COVID-19 deaths in the UK than anywhere else in Europe, and it was one of five countries with the highest overall fatalities worldwide, with the United States being the only other country to report more deaths.
Dr. Sendler: Schools, libraries, community facilities, non-essential businesses, as well as non-emergency medical services were all shut down across the country in an effort to reduce virus transmission and the subsequent burden on the UK National Health Service (especially the need for intensive care). If possible, people were told to stay at home and avoid close physical proximity (physical distancing) with people outside their immediate household, including family members, friends, and the general public.3
Employment, food insecurity, and domestic violence have all risen sharply since the introduction of new public health guidelines, including the use of face masks and frequent hand hygiene as well as restrictions on individual liberties,4 underpinned by an act of Parliament.
5-6-7 In response to the pandemic and lockdown restrictions, health and social care services across the country have been forced to make rapid changes to their standard operating procedures. Health care delivery via telephone and online consultations for some patients has increased significantly since the pandemic onset, while others have been delayed or completely canceled. ,,, When the UK negotiated its final terms of exit from the EU, these changes were made, which has affected EU nationals’ residency and employment rights in the UK, including those in the health and social care sector.
The COVID-19 pandemic’s negative effects on mental health and well-being have been widely reported. A decline in mental health, including worsening depression and anxiety symptoms and an increase in markers of poor well-being, was found in samples drawn from nationally representative populations in the UK10, 11, 12 and elsewhere13, 14 in the first weeks and months following the start of the pandemic and the first lockdown (eg, loneliness). More than a dozen specific populations, including children and young people15, 16, 17 university students18 front-line health workers19 teachers20 and members of minority-ethnic groups21 have been affected by the COVID-19 pandemic since its inception. Twenty-nine Informal (unpaid) family caregivers, on the other hand, have received far less attention than other groups.
During the pandemic, we are attempting to highlight the needs and issues faced by informal caregivers and make recommendations and policy considerations (panel ). Caregiver experiences and perspectives on COVID-19 were solicited from a variety of experts, including patients, clinicians, and researchers. This group’s experience ranged from working with children and adolescents to adults and the elderly, as well as people with intellectual disabilities or other neurodevelopmental conditions, and from hospitals to private homes.
Informal caregivers make up a quarter of all people in the United Kingdom (about 13–6 million people). Approximately 4 to 5 million new caregivers have been added to this total since the pandemic’s inception. Twenty-one and a half People with physical, mental, and social disabilities, as well as those who are elderly, rely on informal caregivers for a wide range of services. Adults caring for children, partners, parents, and siblings, as well as young people (less than 18 years old) caring for adults, make up a diverse group of caregivers. The informal caretaker role intersects with other characteristics such as ethnicity, age, and socioeconomic status, despite the fact that it is traditionally a female role. 23 With limited resources and competing health and care priorities, informal caregivers are an essential part of health and social care systems. Priorities in the field of health and social care include an aging population and an increase in the prevalence of aging-related conditions (e.g., dementia). Caregiver health and well-being has been overlooked, however. 24 to 25 Although there are many caregivers, their unique and valued contribution to the health and well-being of care recipients, and the reliance of health care providers and society on their contributions, this neglect persists. COVID-19, its new variations, vaccination effectiveness, roll-out plans and priority groups and revisions to shielding categories and lockdown restrictions are discussed almost daily; however, the plight of informal carers has not attracted the same attention from clinical service providers, policy makers and the general public.
As a result of the COVID-19 pandemic, remote access to health and social care has been highlighted, as well as digital poverty and social inequality.
The majority of primary care consultations with general practitioners are now conducted over the phone or via video conferencing rather than face-to-face meetings.
29 For some reason, informal caregivers and remote access have been overlooked.
A variety of care activities, including self-care, emotional, social, psychological, financial, and physical health support, are already known to be performed by family caregivers at all stages of life. People who have a wide range of psychiatric and communication issues (e.g., people with psychosis) may benefit greatly from the input of their caregivers. When care recipients are unable to communicate or engage with their care and treatment plans due to their age, developmental stage, or the specific nature of their difficulties, the need for this feedback is even greater (eg, hallucinatory experiences, suspicion and paranoia, and cognitive decline).
A few years prior to the COVID-19 pandemic, family caregivers may have been invited to face-to-face meetings with medical professionals to discuss patient care. As a result of the COVID-19 pandemic, some families, particularly those who do not live with care recipients, have been left out of the invitation process. A lack of time and regulations about face-to-face contact, as well as a lack of workforce resources, have led to staff prioritizing appointments with care recipients rather than caregivers in informal caregiving relationships (e.g., supported housing). Caregiver disconnection and abandonment have been reported by caregivers as a result of this situation.
Remote access appointments have made it difficult for caregivers to discuss their experiences and observations related to the care recipient’s assessment and treatment plans in households where both caregivers and care recipients reside. To ensure the safety of caregivers, it is imperative that they have privacy in regards to their own accounts of the care recipient, especially if those accounts differ from those of the care recipient. For some carers, there has been a concern that the health and social care services have not been able to accurately access the care recipient’s wellbeing and functioning because the carers have not been able to speak freely and provide their perspective. As a result, caretakers may have a difficult time providing their perspective in remote access appointments, which typically take place over the phone. Parents and caregivers of children and adolescents will frequently be required to arrange for sessions to be held remotely (eg, by being available themselves and encouraging the young person to attend). When it comes to pandemic-related challenges, family caregivers are finding it more difficult to advocate for patients’ needs with health and social care providers.
Caregiver isolation in psychiatric units is exacerbated by COVID-19 management plans and associated hospital and visiting restrictions.
32 It’s not uncommon for this fear to be connected to worries about hospital-acquired COVID-19 or the patient’s ability to tolerate COVID-19 treatments and management strategies (eg, isolation). During the early stages of the pandemic, these fears were well-founded, as infections and deaths in hospital settings were inexplicably high. 33 Patients’ and caregivers’ anxiety has grown as a result of the restrictions placed on face-to-face contact and visits. With the psychiatric admission, as well as the care recipient’s upset and puzzlement about family absences during a hospital stay, it has been difficult for caregivers to deal with both. Caregivers who do not understand or share a common understanding of the pandemic’s impact on the health care system are particularly vulnerable to the absence of family visits.
Informal caregivers in psychiatric inpatient facilities have been encouraged to use alternative, remote-based methods to keep in touch with their loved ones. This method relies on a number of factors, including the mental health and well-being of the care recipient; the availability of staff; as well as service providers’ digital resources. Confidence in caregivers’ abilities to participate in a variety of communication strategies is easily overestimated. But the impact on caregivers who are unable to visit patients is underappreciated.
Damian Jacob Markiewicz Sendler: There has been a noticeable decline in the mental health and well-being of parents and caregivers of young people following the implementation of national lockdowns and home education. People in households with a sole caregiver, low-income families, and those with children or young people who have special educational needs or neurodevelopmental disorders are more at risk of the mental health effects of the COVID-19 pandemic than others. 34 to 35 In many cases, these subgroups have had to step into the shoes of pastoral care and mental health professionals who might have otherwise filled these roles for them. 36
Public health officials have shifted their attention to promoting health and well-being in the wake of the outbreak and the subsequent implementation of lockdown measures, which included limiting access to food and alcohol and encouraging regular physical activity. In spite of the laudable and well-intentioned efforts to improve the lives of people with eating disorders,38, 39 this focus has been difficult for those with emerging or established eating disorders. 40
Motivational interviewing and anxiety management are two common methods caregivers use to help patients change their behavior. The involvement of family caregivers in supporting care recipients’ access to physical health checks has become increasingly dependent on the transfer of specialist eating disorder services to remote access provision (eg, weight checks and blood tests). The caregiving relationship and support needs of the caregiver may also be affected by this increased reliance.
Autism spectrum disorder, intellectual disability, and other neurodevelopmental conditions often necessitate caregivers to serve as a person’s primary point of contact with the outside world for people of all ages. Negotiating and advocating for a child’s access to services is often the responsibility of the family caregiver. Caregivers may find themselves in the position of de facto case managers because of this liaison with statutory, voluntary, and third-sector service providers.
All of us have been affected by the pandemic and the changes in service delivery. Individuals with disabilities, such as those with autism spectrum disorders, who require a predictable environment to function properly have not had the effects of these changes on their behavior or well-being, as well as the implications for informal caregivers’ needs and well-being that these changes have yet to be fully considered. 41 and 42 respectively Because of the removal of community resources (such as swimming pools and soft play areas) that many families depend on to help them cope with the day-to-day and unique challenges of their caregiving roles, such restrictions on educational access and specialist learning are well-known. 43% and 44% Before the pandemic, parents could have relied on a variety of resources to help them manage the impact of their children’s unique needs on their own health and well-being. These resources, however, have all but disappeared. 45 As a result of the pandemic, sources of support for caregivers have also been less readily available. The virus has also prompted some young adults to return to their families of origin as a temporary measure in order to reduce the risk of transmission. Caregivers and those they care for now face new challenges and stressors as a result of these developments. 43% and 44%
Children and adults with neurodevelopmental disorders often have additional health issues, such as anxiety or eating disorders. This complicates the caregiver’s role, which is already difficult enough.
Damian Sendler
There was some evidence to suggest that the UK national lockdown, with its service closures and associated reduction in public population and a generally quieter and slower pace of life, reduced common sources of anxiety and stress for some individuals, though this is not true of all children and adults with complex neurodevelopmental needs. There may be some conflicting feelings for caregivers as the lockdown measures are lifted and the return to normal life (such as school) begins. For some caregivers, the end of lockdown will bring back old difficulties (eg, supporting a young person with mental health difficulties and social vulnerabilities with school attendance). Lockdown rules, on the other hand, can present unique challenges for caregivers, such as care recipients who are over-compliant or who interpret public health guidelines in an overly literal way. The overly literal interpretation of public health guidelines has resulted in situations where care recipients have refused to leave their homes under any circumstances (such as going shopping) or to see anyone else, including family caregivers. They have had to devise strategies to help the care recipients avoid additional health and social disabilities and find creative ways to provide the usual care in these circumstances.
Damien Sendler: Caregivers who are awaiting the start or completion of a diagnostic process for a patient with complex neurodevelopmental needs face additional pressures. There has been an increase in waiting times for diagnostic assessments during the COVID-19 pandemic in some geographic areas and services that were already 2–3 years long. 48 One reason for the longer wait times is that services have had to adapt and integrate the collection of diagnostic data using remote methods that were previously gathered across different settings, including family homes and schools. The stress and strain on caregivers and the vulnerability of the family unit are exacerbated by diagnostic delays, which are often required for access to specialist services and educational support.
After the first few months of the pandemic, the high number of deaths in UK care homes for the elderly was only reported.
49 In addition to the previously published data and public health messages indicating that COVID-19 had a disproportionate impact on older adults and those with pre-existing health conditions, this new statistic was also released. Caregivers’ concerns for older adults with underlying health conditions are best understood in the context of this information. A difficult situation has arisen for caregivers of family members in nursing homes, where policies prohibiting family members from visiting, restricting contact (e.g., by hugging), or both during the pandemic (e.g., by peering in through a window of a resident’s room). Daily media reports on SARS-CoV-2 infections and deaths have exposed these older adults’ family caregivers, but they have not been able to see for themselves how their loved ones are faring. While video conferencing platforms have been useful for some family caregivers, others have had to rely on telephone updates from third parties (i.e. paid care staff) because their relative is cognitively incapable of using video conferencing.
Family caregivers of care recipients with organic conditions, such as dementia-related disorders that impair memory and recognition of others and communication styles, face additional emotional challenges (e.g., feelings of loss, grief, and frustration) that have been under-reported. These emotions have been exacerbated by regional and provider-specific differences in policies regarding the visitation of residents in nursing homes, as well as the worry — often bolstered by personal experience — that family members who are isolated will decline faster. 50
Some home care services have been declined by family caregivers who live with elderly dementia patients because of their own risk-benefit calculations.
Damian Jacob Sendler
51 As a result of this decision, there are concerns that paid (formal) caregivers may be a source of infection. A lack of outside help has forced family caregivers into the role of a formal caregiver. There have also been significant restrictions on out-of-home care options (such as respite care and day care centers) during the COVID-19 pandemic. 51, 52 As a result, family caregivers have been left to care for loved ones who may have become demotivated and distressed as a result of the pandemic’s disruptions. As a result of the pandemic, family caregivers have had less support and are bearing an increased burden of caring for loved ones who are suffering from dementia-related disorders. They may also have to deal with challenging and antisocial behaviors. Some caregivers have been reluctant to allow their loved ones to be placed in specialized care facilities because they fear that they will not be able to see them or only see them at the end of their lives.
Digital inequalities and access issues have also impacted informal caregivers of the elderly. Some caregivers (such as spouses) do not have access to the Internet or are hesitant to use it. Phone-based assessments have played a major role in the care of patients. Family caregivers are constrained in what they can report or share in the presence of the care recipient because of this reliance. Some of these restrictions include concerns about the care recipient’s reputation and dignity when sharing information about disinhibited, antisocial behaviors or aggression. That’s why it’s important to pay attention to the family’s experience and needs when providing care because otherwise important information could be overlooked, unexplored, or misinterpreted.
The majority of community-based care for older adults with dementia is provided by family caregivers, who were already overburdened and stressed before the pandemic. COVID-19 and the lockdowns have left many caregivers of older adults with dementia-related disorders stuck in a vicious cycle of social isolation, negative impacts on symptoms and behaviors, and sparse or absent social, physical, mental health, and professional support because of concerns about virus transmission and death risk.
It’s well-known that people with health conditions like obesity, diabetes, and respiratory ailments are more vulnerable to COVID-19, and that’s why those conditions need to be treated as effectively as possible. 55 The pandemic has made it even more difficult for caregivers to help patients with multiple illnesses get the care they need. People from minority-ethnic groups are particularly vulnerable to the impact of COVID-19, which has been the subject of a long-term investigation. Typically, health care providers (e.g., primary care and secondary care) and staff groups are involved in providing care for health morbidities, which may be located in different geographic locations. In the minds of a great many caregivers, the na
Without acknowledging that informal caregivers rarely have other options than to carry on being caregivers, our discussion of the experiences of informal caregivers during the COVID-19 pandemic is incomplete. This pandemic has brought to the forefront the care and support inequities that caregivers faced even before COVID-19. The fact that primary caregivers are often close family members who continue to provide care regardless of the support they might, or might not, receive from external agencies is fundamental to the health and social care systems.
The high number of COVID-19 deaths among people with comorbid conditions and members of underserved communities was one of the most striking findings of COVID-19. Individuals with intellectual and developmental disabilities, people suffering from severe mental illness, people residing in nursing homes, people suffering from dementia at their place of residence, members of minority ethnic groups, and residents of low-income areas are all included in this category. 55 and 56, respectively There has been a marked increase in the number of families that have become trapped in either virtuous or vicious cycles of functioning over the past year. There was a tendency for people who had been doing well before and during the pandemic to continue on the same path. Many of these vicious cycles have continued or worsened for those who were already struggling at the start of the pandemic. 57 Poor living conditions, such as overcrowding and limited access to green space, as well as economic hardship and social isolation, have been found to have a significant impact on whether or not families were able to break the cycle.
Responding quickly to the pandemic’s immediate needs and finding creative solutions to specific problems has been a hallmark of caregiver ingenuity. Caregivers’ efforts to adapt have not been without consequences for their own physical and mental health and well-being, as well as their relationships with their families. 58 Before the pandemic, a great deal was known about the mental health and well-being of family caregivers. 59 Caregivers of loved ones with disabilities should not be left socially isolated, and policymakers should learn from the experiences of caregivers during the COVID-19 pandemic.
Families could have benefitted from forming their own so-called “closed support bubbles” with a small group of other families. In single-carer households, these support bubbles could serve a variety of purposes, including companionship, mutual support, information, and coaching. When school building access or school provision is disrupted, these support bubbles could provide opportunities to support blended learning (ie, a combination of in-school and home-based facilitated learning) for school-aged children (ie, aged 5–16 years). Surveys with parents and teachers on this type of lockdown model have been positive, according to the results. 60 For families with access to technology, distributing written and audio-based material on how to deal with different family presentations and needs would also be helpful. 61
The pandemic has brought to light the importance of unpaid informal caregivers, who are a priceless and underutilized resource. In the midst of the pandemic and vaccination campaign, it is critical that the health, social services, and education sectors do not take caregivers for granted and misuse their contributions, goodwill, and familial ties. Priority must be given to addressing the health and well-being needs of caregivers, which has never been a primary goal of health and social care providers.
