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COVID-19

Telehealth in Palliative Care: Communication strategies from the COVID-19 pandemic

Background: Palliative care was once believed to be too high-touch to be delivered via telehealth. However, numerous studies have demonstrated the positive effects of palliative care delivered through telehealth. Because the COVID-19 pandemic has quickly shifted how health care is delivered to patients with cancer, particularly because of their immunocompromised status and the risks associated with unnecessary exposures in the clinic, previous lessons from palliative care research studies can be used to inform practice. Methods: This article presents a case study that illustrates evidence and best practices for continuing to deliver palliative care via telehealth after COVID-19 restrictions are lifted.

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Strengths and Struggles for Families Involved in Hospice Care During the COVID-19 Pandemic

Background: The COVID-19 pandemic presented unique health and social challenges for hospice patients, their families, and care providers. Methods: This qualitative study explored the impact of the pandemic on this population through the experiences and perceptions of social workers in hospice care. A survey was distributed through national and local listservs to social work practitioners throughout the United States between May 15 and June 15, 2020. Objectives: The study was designed to learn the following: (1) Concerns patients experienced as a result of the pandemic, (2) strengths/resilience factors for patients during the COVID-19 pandemic, and (3) the personal and professional impact of the pandemic on social workers. Results: Themes uncovered in hospice care included isolation, barriers to communication, disruption of systems, issues related to grieving, family and community support, adaptation, and perspective. Conclusions: The authors provide recommendations for social work practice related to virtual communication, emergency planning, and evidence-based intervention for Persistent Complex Bereavement Disorder. Recommendations for policy include uniform essential worker status for social workers, telehealth reimbursement and expanded caregiver respite benefits.

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Smiles behind the masks: A systematic review and narrative synthesis exploring how family members of seriously ill or dying patients are supported during infectious disease outbreaks

Background: Infection control measures during infectious disease outbreaks can have significant impacts on seriously ill and dying patients, their family, the patient-family connection, coping, grief and bereavement. Aim: To explore how family members of patients who are seriously ill or who die during infectious disease outbreaks are supported and cared for during serious illness, before and after patient death and the factors that influence family presence around the time of death. Design: Systematic review and narrative synthesis. Data sources: CINAHL, Medline, APA PsycInfo and Embase were searched from inception to June 2020. Forward and backward searching of included papers were also undertaken. Records were independently assessed against inclusion criteria. Included papers were assessed for quality, but none were excluded. Findings: Key findings from 14 papers include the importance of communication and information sharing, as well as new ways of using virtual communication. Restrictive visiting practices were understood, but the impact of these restrictions on family experience cannot be underestimated, causing distress and suffering. Consistent advice and information were critical, such as explaining personal protective equipment, which family found constraining and staff experienced as affecting interpersonal communication. Cultural expectations of family caregiving were challenged during infectious disease outbreaks. Conclusion: Learning from previous infectious disease outbreaks about how family are supported can be translated to the current COVID-19 pandemic and future infectious disease outbreaks. Consistent, culturally sensitive and tailored plans should be clearly communicated to family members, including when any restrictions may be amended or additional supports provided when someone is dying.

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Silent suffering of the dying and their families: impact of COVID‐19

Death, grief and bereavement all look different in the current COVID‐19 pandemic. Patients and families are suffering as a result of COVID‐19 itself, and the measures required to contain it. As a result, health professionals need to be aware of potential for additional psychological distress, as well as the risk of prolonged grief disorder.

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Short-term impacts of COVID-19 on family caregivers: Emotion regulation, coping, and mental health

Background: The negative mental health impact of coronavirus disease 2019-related stressors may be heightened for those caring for children, who bear responsibity for their welfare during disasters. Aim: Based on the Transactional Model of Stress and Coping, we inquired whether caregivers' emotion regulation and coping behavior were associated with posttraumatic stress symptoms (PTSS). Materials & Methods: Data were collected through a national online survey in April 2020, and again 60 days later. Results: Of the 801 longitudinal cases, 176 (63.6% female; mean age = 33.5) reported caring for minors in their homes during the pandemic. Over 20% of caregivers experienced clinically concerning PTSS, rates higher than their noncaregiving counterparts. Regression analysis indicates caregivers' baseline mental health symptoms and emotion regulation predicted PTSS 60 days later. Discussion: Implications for needed parenting supports among families experiencing traumatic stress are provided. Conclusion: Anxiety symptoms at baseline were the most significant and consistent contributor to all models and were significantly higher among those with clinically concerning levels of PTSS suggesting a clear intervention target.

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Self-reported changes in physical activity, sedentary behavior, and screen time among informal caregivers during the COVID-19 pandemic

Background: Informal caregivers providing unpaid assistance may be vulnerable to changes in health behaviors due to modifications in caregiving during the COVID-19 pandemic. Therefore, this cross-sectional study explored self-reported changes in physical activity (PA), sedentary behavior, and screen time among informal caregivers providing care for older adults aged 50+ during the pandemic. Methods: Study participants were recruited via Amazon’s Mechanical Turk and reported their perceived changes (increased a lot, increased a little, remained the same, decreased a little, decreased a lot) in moderate-intensity PA (MPA), vigorous-intensity PA (VPA), sedentary behavior, and screen time (weekday and weekend) during the pandemic. For analytic purposes, response categories were categorized into three-level ordinal variables—increased (increased a lot, increased a little), no change (remained the same), decreased (decreased a little, decreased a lot). Multinomial logistic regression models assessed the likelihood of changes (vs. no change) in MPA, VPA, sedentary behavior, and screen time (weekday, weekend) based on caregiving and demographic characteristics. Results: In total, 2574 individuals accessed the study link, 464 of whom did not meet eligibility requirements. In addition, people who completed 80% or less of the survey (n = 1171) and/or duplicate IP addresse (n = 104) were excluded, resulting in an analytic sample of n = 835. The sample was 69% male, had a mean age of 34 (SD = 9.7), and 48% reported increased VPA, while 55% reported increased MPA. The majority also reported increased sedentary behavior, as well as increased screen time. Respondents living with their care recipient were more likely to report increased weekday screen time (Odds Ratio [OR] = 1.55, 95% CI 1.11–2.16) and sedentary behavior (OR = 1.80, 95% CI 1.28–2.53) than respondents not living with the care recipient. Those living with their care recipient were also more likely to reported increased MPA (OR = 1.64, 95% CI 1.16–2.32), and VPA (OR = 1.53, 95% CI 1.09–2.15), but also more likely to report a decrease in VPA (OR = 1.75, 95% CI 1.14–2.70). Conclusion The majority of respondents reported that their MPA, VPA PA, sedentary behavior, and screen time had changed during the pandemic. Living with the care recipient was associated with both positive and negative changes in behavior. Conclusions: Future research can explore factors associated with these reported changes in behavior.

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Secondary Impacts of COVID-19 Pandemic in Fatigue, Self-Compassion, Physical and Mental Health of People with Multiple Sclerosis and Caregivers: The Teruel Study

Background: The secondary impacts of the COVID-19 pandemic are distress triggers and risk factors for mental health. Conversely, self-compassion skills and compassionate thoughts/behaviors towards suffering may contribute to their alleviation. Both psychological constructs are interrelated in life-threatening diseases such as multiple sclerosis (MS). Methods: The Teruel Study retrospectively evaluated the impact of strict confinement on the 44 people with MS of this Spanish province and 24 caregivers, specifically assessing (1) fears and perceptions; (2) self-compassion (people with MS) and compassion (caregivers); (3) physical and mental health, and fatigue. Results: Despite better housing conditions, people with MS considered confinement very difficult to handle, more than their caregivers, but they were less afraid of COVID-19 and worsening of MS. Still, they recognized worse health than before confinement. Reclusion and lack of walks were the worst of confinement. Caregivers also referred to lack of leisure and uncertainty–fear. All agreed the best was staying with the family, but some found ‘nothing’ positive. Self-compassion remained moderate–high and strongly correlated with their moderate levels of social function, vitality, physical role, and global health. Physical and cognitive fatigue scores were high, and self-compassion negatively correlated with them, explaining a 19% variance in global health. The high compassion of the caregivers did not correlate with any variable.

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Rural-Urban Differences in Caregiver Burden Due to the COVID-19 Pandemic among a National Sample of Informal Caregivers

Objectives: The objective of this exploratory study was to explore potential associations between changes to caregiver burden (CB) due to the COVID-19 pandemic and rural-urban status using a nationally representative sample of 761 informal caregivers. Methods: Tertiles of two measures of rural-urban status were used: Rural-Urban Commuting Areas (RUCAs) and population density. Bivariate and multivariable binary and ordinal logistic regression were used to asses study objectives. Results: Using RUCAs, rural informal caregivers were more than twice as likely as urban informal caregivers to report a substantial increase in CB due to COVID-19 (OR 2.27, 95% CI [1.28–4.02]). Similar results were observed for population density tertiles (OR 2.20, 95% CI [1.22–3.96]). Having a COVID-19 diagnosis was also significantly associated with increased CB. Conclusions: Understanding and addressing the root causes of rural-urban disparities in CB among informal caregivers is critical to improving caregiver health and maintaining this critical component of the healthcare system. 

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Rapid development of a decision-aid for people with dementia and their families during COVID-19

Introduction: COVID-19 as a pandemic has disproportionately affected older adults, including those with dementia. The effects on health and social care systems has necessitated a rapid-response approach to care planning and decision-making in this population, with reflexivity and responsiveness to changing individual and system needs at its core. In light of this, a decision-making tool to help families of persons with dementia was developed using a combination of qualitative data and evidence synthesis. Objectives: To develop a decision-aid using a combination of assessment and evidence-gathering methods for families of persons with dementia.MethodsSemi-structured interviews with helpline staff from national end-of-life and supportive care organisations formed the basis of the tool design. Co-design with people living with dementia, current and former carers and experts in general practice and social care shaped the next stage. Simultaneously, a rapid review of current evidence on making decisions with older people at the end of life was undertaken. Results: Output from interviews covered many topics, including trust, agency and confusion in making decisions in the context of COVID-19. The rapid review of existing evidence highlighted the need to consider both process and outcome elements of decision-making. Conclusions: Combining different sources and forms of evidence was efficient and valuable in creating a novel decision-making tool for persons with dementia and their families within the context of COVID-19. The decision-aid covered care planning, caregiver support systems, access to information and contingency considerations. Upon publication, the tool was adopted by NHS England and other leading healthcare organisations.

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Quality of Life in Brain Tumor Patients and Their Relatives Heavily Depends on Social Support Factors during the COVID-19 Pandemic

Background: The COVID-19 pandemic is associated with significant morbidity, mortality, and restrictions on everyday life worldwide. This may be especially challenging for brain tumor patients given increased vulnerability due to their pre-existing condition. Here, we aimed to investigate the quality of life (QoL) in brain tumor patients and relatives in this setting. Methods: Over twelve weeks during the first wave of the pandemic (04–07/2020), brain tumor patients and their families from two large German tertiary care centers were asked to complete weekly questionnaires for anxiety, depression, distress, and well-being. Information regarding social support and living conditions was also collected. One hundred participants (63 patients, 37 relatives) completed 729 questionnaires over the course of the study. Results: Compared to relatives, patients showed more depressive symptoms (p < 0.001) and reduced well-being (p = 0.013). While acceptance of lockdown measures decreased over time, QoL remained stable. QoL measures between patients and their families were weakly or moderately correlated. The number of social contacts was strongly associated with QoL. Age, living conditions, ongoing therapy, employment, and physical activity were other predictors. Conclusions: QoL is correlated between patients and their families and heavily depends on social support factors, indicating the need to focus on the entire family and their social situation for QoL interventions during the pandemic.

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Quality of Life Changes during the COVID-19 Pandemic for Caregivers of Children with ADHD and/or ASD

Background: The COVID-19 pandemic has presented many challenges to caregivers of children. Families with children with attention-deficit/hyperactivity disorder (ADHD) and/or autism spectrum disorder (ASD) are an understudied but potentially vulnerable population to changes during the outbreak. As such, the aim of this study was to contrast quality of life for caregivers of children with ADHD and/or ASD, before and during the pandemic, compared to caregivers of neurotypical (NT) children. Methods: Total, Parent Health-Related Quality of Life, and Family Functioning Summary Scores from the Family Impact Module of the Pediatric Quality of Life InventoryTM were contrasted among caregivers of children with ADHD, ASD, comorbid ADHD and ASD, and NT development. For all scores, caregivers of ADHD and/or ASD children reported lower quality of life, both before and during the pandemic, in comparison to caregivers of NT children. Results: For all diagnoses, quality of life decreased during the pandemic, but caregivers of children with ADHD and/or ASD reported a greater decrease in quality of life than caregivers for NT children. Conclusions: There are limitations to this study in terms of the composition of the sample and the survey methodology, but we are able to conclude that caregivers of children with ADHD and/or ASD have been disproportionately affected by the pandemic, and it is imperative that these families receive additional resources and support to improve their quality of life.

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Psychosocial impact of Covid-19 outbreak on Italian asthmatic children and their mothers in a post lockdown scenario

Background: Italy was the first European country to fight the Covid-19 outbreak. To limit the transmission of the virus, the Italian Government imposed strict domestic quarantine policies and temporary closure of non-essential businesses and schools from March 10th,2020. Although more and more literature is exploring the impact of the pandemic on non-referred children and families, only a few studies are focused on the psychosocial impact of Covid-19 in chronically ill children and their caregivers. Methods: The present study investigates asthma control and children and mothers’ psychological functioning (i.e.: psychological well-being, fear of contagion, and mothers’ Covid-19 related fears) in 45 asthmatic children aged 7-to-14, compared to a control sample. The subjects were administered an online survey after the lockdown (from 28th May to 23rd August 2020). Results: The analysis shows that asthmatic children presented higher concern in relation to contagion, however, no difference in psychological functioning was displayed between the two cohorts. Mothers reported more Covid-19 related fears, and greater worries according to the resumption of their children’s activities. Moreover, they indicated a global worsening of their psychological well-being during the lockdown. Furthermore, regarding the clinical sample, the multivariate regression model showed that a worsening of mothers' psychological and children’s physical well-being was associated with a worsening of children’s psychological well-being during the lockdown. Conclusions: The results of this study indicate that mothers of asthmatic children can be more prone to experience psychological fatigue in a pandemic scenario. Special programs should be developed to support caregivers of chronically ill children.

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Psychological Support Interventions for Healthcare Providers and Informal Caregivers during the COVID-19 Pandemic: A Systematic Review of the Literature

Background: During the COVID-19 pandemic, healthcare providers and informal caregivers were at an increased risk of adverse mental health effects. This systematic review provides a summary of the available evidence on the content and efficacy of the psychological support interventions in increasing mental health among healthcare providers and informal caregivers during the COVID-19 pandemic. Methods: PubMed, Google Scholar, PsychINFO, and Scopus databases were systematically searched for relevant articles, and the methodological quality of selected articles was assessed using the Quality Assessment Tool for Quantitative Studies. Results: A search of electronic databases identified five reports based on inclusion and exclusion criteria. All psychological support interventions for caregivers were delivered digitally. Despite the large heterogeneity of the selected studies, the findings support the efficacy of mental health interventions in reducing distress and burnout, while promoting self-efficacy and well-being in both healthcare providers and informal caregivers. Conclusion: Since mental health problems are expected to increase during, and as a result of, the COVID-19 pandemic, and digital tools might offer a range of mental health treatments to meet the unique and immediate needs of people, further research is needed to test the cost-effectiveness of digital psychological interventions.

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Psychological Impact of COVID-19 Outbreak on Families of Children with Autism Spectrum Disorder and Typically Developing Peers: An Online Survey

Background: When COVID-19 was declared as a pandemic, many countries imposed severe lockdowns that changed families' routines and negatively impacted on parents' and children's mental health. Several studies on families with children with autism spectrum disorder (ASD) revealed that lockdown increased the difficulties faced by individuals with ASD, as well as parental distress. No studies have analyzed the interplay between parental distress, children's emotional responses, and adaptive behaviors in children with ASD considering the period of the mandatory lockdown. Furthermore, we compared families with children on the spectrum and families with typically developing (TD) children in terms of their distress, children's emotional responses, and behavioral adaptation. Methods: In this study, 120 parents of children aged 5–10 years (53 with ASD) participated. Results: In the four tested models, children's positive and negative emotional responses mediated the impact of parental distress on children's playing activities. In the ASD group, parents reported that their children expressed more positive emotions, but fewer playing activities, than TD children. Families with children on the spectrum reported greater behavioral problems during the lockdown and more parental distress. Conclusions: Our findings inform the interventions designed for parents to reduce distress and to develop coping strategies to better manage the caregiver–child relationship. 

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Psychological distress and associated factors of the primary caregivers of offspring with eating disorder during the coronavirus disease 2019 pandemic

Background: The Coronavirus Disease 2019 (COVID-19) is a global pandemic and posed serious challenges in many countries. A number of studies before the COVID-19 pandemic have shown that the primary caregivers of the ED patients are subjected to great burden, psychological pressure, and serious emotional problems. This study aimed to investigate the psychological distress level of the primary caregivers of ED offspring during the COVID-19 pandemic. Methods: From March 6 to April 20, 2020, 378 questionnaires for primary caregivers of ED offspring and 1163 questionnaires for primary caregivers of healthy offspring were collected through an online crowdsourcing platform in mainland China. Valid questionnaires that met the criteria included 343 (90.74%) primary caregivers of ED offspring and 1085 (93.29%) primary caregivers of healthy offspring. Using Propensity Score Matching (PSM), 315 (83.33%) primary caregivers of ED offspring and 315 matched primary caregivers of healthy offspring were included in the statistical analysis. Depression, anxiety, perceived stress and social support were measured by Patient Health Questionnaire-9, Generalized Anxiety Disorder-7, Perceived Stress Scale-10 and Social Support Rating Scale, respectively. Results: The rates of depression and anxiety of the primary caregivers of ED offspring were 20.6 and 16.5%, which were significantly higher than those of primary caregivers of healthy offspring (4.1 and 2.2%), all P < 0.001. Regression analysis found that perceived stress, social support, previous or present mental illness, family conflicts during the COVID-19 pandemic had a significant impact on the severity of depression (P < 0.001, P = 0.002, P = 0.041, P = 0.014); Perceived stress, social support, family conflicts during the COVID-19 pandemic and years of education had a significant impact on the severity of anxiety (P < 0.001, P = 0.002, P = 0.002, P = 0.003). Conclusions: During the COVID-19 pandemic, primary caregivers of ED offspring experienced more psychological distress than that of primary caregivers of healthy offspring. ED caregivers with high perceived stress may have higher levels of depression and anxiety. ED caregivers with high social support, no mental illness and no family conflicts may have lower levels of depression. ED caregivers with high social support, no family conflicts, and high years of education may have lower levels of anxiety.

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Protocol for a patient-reported experience measures (PREMs) survey of patients discharged during the COVID-19 pandemic and their family caregivers

Introduction: In the Swiss canton of Valais, the first cases of SARS-CoV-2 were detected on 28 February 2020. Discharged patients’ and their family caregivers’ experiences in relation to safety, quality of care, trust and communication during the COVID-19 hospitalisation period remain unexplored. The study aims to collect the patient-reported experience measures (PREMs) survey of patients discharged during the COVID-19 pandemic and their family caregivers. Methods and analysis: Patients aged ≥18 years, hospitalised between 28 February and 11 May 2020 and then discharged home, plus their family caregivers will be invited to complete a self-administrated questionnaire made up of 14 closed questions and 1 open-ended question. The questionnaire will include items on the patient’s hospital trajectory and assess the interpersonal trust placed in nurses and physicians based on Krajewska-Kułak et al’s Trust in Nurse Scale and Anderson et al’s Trust in Physician Scale. Participants’ perceived stress will be assessed using Cohen et al’s Perceived Stress Scale. Feelings of safety will be examined based on Dryhurst et al’s questionnaire on Risk Perception During Pandemics. After ethical clearance, data will be collected using a postal paper questionnaire and via an online web link. Descriptive and inferential statistics will be computed, and the open question will undergo a qualitative thematic analysis. We will analyse perceptions of the different hospital trajectories experienced by patients undergoing surgery with and without a SARS-CoV-2 infection. Ethics and dissemination: The Human Research Ethics Committee of Vaud (2020-02025) authorised this study. Gathering experiences and learning about the impact of the COVID-19 pandemic on the social determinants of health among discharged patients and families fit in well with the Triple Aim framework and the PREMs survey. The study will formulate recommendations to support interventions in the face of the second wave of COVID-19 pandemic and their effects on patients’ and their family caregivers’ experiences.

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Prioritizing Family Caregiving Research Across Diverse Settings to Support Our Aging Society

An editorial is presented on the Prioritizing Family Caregiving Research Across Diverse Settings to Support Aging Society. The article discusses that this has become abundantly clear during the evolving COVID-19 pandemic as family caregivers took on increasing responsibility for care amid the most challenging of circumstances; and research must not only continue but must also grow to better demonstrate how we can effectively support caregivers.

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The reported effects of the COVID-19 pandemic on people with intellectual disability and their carers: a scoping review

Background: People with an intellectual disability are a vulnerable group during COVID-19 due to multi-morbidity, frailty, underlying conditions/health problems, social circumstances and limitations in understanding. This place them at greater risk of more severe outcomes from COVID-19. Objective: To chart the evidence of the effects of the COVID-19 pandemic on people with intellectual disability and their carers reported in the research. Methods: A scoping review method was used to review literature published across eight databases in 2020 and included manual searches of reference lists of included articles. Results: Sixteen studies were selected for inclusion. The findings highlight that professionals, people with intellectual disability and their carers were keen to comply with pandemic related public health guidance. However, implementing infection prevention and control measures in certain contexts for people with intellectual disability was challenging. Thereby a rights-based, person-centred approach to care is essential and professionals need to extend their understanding and practice of collaborative working to include people with intellectual disability and their family/carers. The findings highlight that compliance with public health guidance and infection control measures can be difficult for people with intellectual disability to implement. Conclusions: There is limited good quality robust research on COVID-19 and people with intellectual disability and/or their carers experiences. 

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The Powerlessness of Families

The article focuses on coronavirus pandemic there has been discussion in op-eds and social media about the impact of visitor limitations. Topics include the policy changed to allow limited visitation are one designated visitor for eight hours per day in the afternoon, and the regular phone calls she had been receiving from the medical providers stopped once visitors were allowed.

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Needs of Dementia Family Caregivers in Spain during the COVID-19 Pandemic

Background: We explored the experience from caregivers of people with dementia (PwD) during mandatory confinement due to the COVID-19 pandemic in Spain. Methods: An online survey, which studied the perceptions of the main problems and consequences experienced during confinement, was answered by 106 family caregivers of PwD. Results: Results showed that family caregivers of PwD experienced psychological problems, like anxiety, mood, sleep, or eating disorders during confinement and felt less supported when they had to handle challenging behaviors or offer meaningful activities. Conclusions: An innovative multi-Tiered supportive approach is needed which considers a post-pandemic reality and ensures the continuity of quality care for PwD and their family careers. 

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The need for psychological, caregiver‐centered intervention in the time of COVID‐19

We focus attention on problems that are affecting the informal caregivers of patients with neurodegenerative disorders in the time of COVID‐19. The pandemic is increasing difficulties in the management of the frailest people and their isolation is actually even more tangible than it was in the past. The social restrictions and the lockdown of many activities are putting the system of care provided by informal caregivers on the edge of collapse. We incite the scientific community to face these concerns and provide clinicians clear indications for assisting and supporting caregivers in the care of their relatives during this period. We suggest that e‐health programs could become the ideal “environment” to favor the continuity of care for patients with neurodegenerative conditions and guarantee the required support to their caregivers, both directly in terms of psychological management and indirectly for helping them in disease management.

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Navigating the terrain of moral distress: Experiences of pediatric end-of-life care and bereavement during COVID-19

Objective: Parents of seriously ill children worry about their vulnerable child contracting COVID-19, whether their child's palliative care providers will be able to continue to provide the same quality of care to their child, and who can be with the child to provide comfort. For providers, shifts in healthcare provision, communication formats, and support offerings for families facing distress or loss during the pandemic may promote providers’ moral distress. This study aimed to define the ways that the COVID-19 pandemic has impacted end-of-life care and approach to bereavement care in pediatric palliative care (PPC). Method: The Palliative Assessment of Needed DEvelopments and Modifications In the Era of Coronavirus (PANDEMIC) survey was developed to learn about the PPC experience during COVID-19 in the United States. The survey was posted with permission on seven nationally focused Listservs. Results: A total of 207 PPC team members from 80 cities within 39 states and the District of Columbia participated. In the majority of hospitals, admitted pediatric patients were only allowed one parent as a visitor with the exception of both parents or nuclear family at end of life. Creative alternatives to grief support and traditional funeral services were described. The high incidence of respondents’ depicted moral distress was often focused on an inability to provide a desired level of care due to existing rules and policies and bearing witness to patient and family suffering enhanced by the pandemic. Significance of results: The COVID-19 pandemic has had a profound impact on the provision of end-of-life care and bereavement for children, family caregivers, and PPC providers. Our results identify tangible limitations of restricted personal contact and the pain of watching families stumble through a stunted grieving process. It is imperative that we find solutions for future global challenges and to foster solidarity in PPC.

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#MoreThanAVisitor: Families as "Essential" Care Partners During COVID-19

The public health response to the current Coronavirus pandemic in long-term care communities, including assisted living, encompasses prohibiting visitors. This ban, which includes family members, has been criticized for being unfair, unhealthy, and unsafe. Against this backdrop, I examine the roles family play in residents' daily lives and care routines. I argue that classifying family as "visitors" rather than essential care partners overlooks their critical contributions and stems from taken-for-granted assumption about gender, families, and care work, and I demonstrate why families are more than visitors. Policies that ban family visits also reflect a narrow understanding of health that focuses on mitigating infection risk, but neglects overall health and well-being. This policy further stems from a limited comprehension of care relations. Research shows that banning family visits has negative consequences for residents, but also families themselves, and direct care workers. I argue that identifying ways to better understand and support family involvement is essential and demonstrate the utility of the Convoys of Care model for guiding the reconceptualization of family in long-term care research, policy, and practice during and beyond the pandemic.

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Life under lockdown and social restrictions - the experiences of people living with dementia and their carers during the COVID-19 pandemic in England

Background: The impact of COVID-19 restrictions on people living with dementia and their carers is an emerging focus of recent research determining how we can best support this population. People living with dementia have faced service curtailment, increased risk for COVID-19, as well as potential heightened deterioration. This study reports the experiences of people living with dementia and their family carers during the early months of the COVID-19 pandemic in England and the impact on them. Methods: We recruited and remotely interviewed 30 people living with dementia in their own homes and 31 family carers, via video or telephone call in mid-2020. Data were transcribed and analysed using thematic analysis. Results: People living with dementia often had a basic understanding of COVID-19 restrictions but could have difficulty translating this into personalised risk-appraisal of their own actions. Managing COVID-19 risks facing people living with dementia at home was largely done by family carers, exemplified by changes to living arrangements, which could strain or sustain caring relationships. Well-established familial caring relationships contributed to the wellbeing of the person living with dementia and their carer, as well as keeping to simple routines that included leaving the home for exercise and stimulation. People living with dementia reported some negative psychological and cognitive effects due to the imposed restrictions, such as increased apathy, irritability, or anxiety, which were fuelled by lack of social engagement. Conclusions: Structuring routine (remote) social interactions where possible could increase social engagement and improve wellbeing for people living with dementia, especially those with limited familial support in a post-COVID-19 context. As some care relationships had been restructured to manage COVID-19 risks, additional carer strain may emerge as a result of the impact on the independence of the person living with dementia and come to the attention of professionals in health and care services. People living with dementia and their carers highlighted the importance of maintaining or adapting routines which may be useful learning for professionals, although additional support may be necessary for those who are impacted by more severe or worsening symptoms of dementia.

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The issue of Caregiver Exclusion During the COViD-19 Pandemic With Christine Alewine, MD, PHD, of the National Cancer Institute

When the United States was in the early throes of the COVID-19 pandemic, hospitals and health care centers took many steps to decrease risk of COVID-19 transmission for patients who needed health care unrelated to the new coronavirus. The medical community largely cut off visitor access in hospitals and care centers, also cutting off access for friends and family members of patients who act as primary caregivers and play a critical role in communication of health information and continuity of care for patients. This issue is one that particularly affects people undergoing active cancer treatment, a group of oncologists and a patient advocate noted in a recent article in the Journal of Clinical Oncology (2021; doi: 10.1200/JCO.21.00126). “Previously, most patients arrived to clinic with a companion or even a crew of supportive friends and family that packed the examination room and sent our staff scrambling to pillage extra chairs from adjacent rooms to accommodate everyone. Now, patients arrive alone,” the authors noted in the article. The problem is that these companions and supportive friends provide much more than a familiar face to the patient, explained coauthor, Christine Alewine, MD, PhD, Lasker Clinical Research Scholar in the Laboratory of Molecular Biology at the National Cancer Institute's Center for Cancer Research. “Caregivers are an integral part of a cancer patient's team,” she told Oncology Times. “Care suffers in their absence. While there is a risk that exposure of medical staff to the caregiver could lead to an increased risk of COVID-19 transmission, maybe that risk is less critical than the loss of this care team member.” Here are the lessons Alewine believes the oncology community can learn from this pandemic.

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Informal carers in severe mental health conditions: Issues raised by the United Kingdom SARS-CoV-2 (COVID-19) Pandemic

An introduction is presented in which the editor discusses articles in the issue on topics including delusions, cognitive disturbance, and marked difficulties with social functioning and networks.

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Informal caregivers during the COVID-19 pandemic perceive additional burden: findings from an ad-hoc survey in Germany

Background: While the relation between care involvement of informal caregivers and caregiver burden is well-known, the additional psychosocial burden related to care involvement during the COVID-19 pandemic has not yet been investigated. Methods: A total of 1000 informal caregivers, recruited offline, participated in a cross-sectional online survey from April 21 to May 2, 2020. Questionnaires were used to assess COVID-19-specific changes in the care situation, negative feelings in the care situation, problems with implementation of COVID-19 measures, concerns/excessive demands, loss of support, change in informal caregivers’ own involvement in care and problems with provision, comprehension & practicability of COVID-19 information, and to relate these issues to five indicators of care involvement (i.e., being the main caregiver, high expenditure of time, high level of care, dementia, no professional help). Binomial and multiple regression analyses were applied. Results: Across indicators of care involvement, 25.5–39.7% reported that the care situation rather or greatly worsened during the COVID-19 pandemic, especially for those caring for someone with dementia or those usually relying on professional help. In a multiple regression model, the mean number of involvement indicators met was associated with age (β = .18; CI .10–.25), excessive demands (β = .10, CI .00–.19), problems with implementation of COVID-19 measures (β = .11, CI .04–.19), an increase in caregiving by the informal caregivers themselves (β = .14, CI .03–.24) as well as with no change in the amount of caregiving (β = .18, CI .07–.29) and loss of support (β = −.08, CI −.16–.00). No significant associations with the mean number of involvement indicators met were found for gender, educational level, change in the care situation, negative feelings, and provision, comprehension & practicability of COVID-19 information. Conclusion: Those caregivers who perceived extensive care burden were those who suffered most during the pandemic, calling for structural support by the healthcare system now and in the future. Trial registration This article does not report the results of a health care intervention on human participants.

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Impacts of COVID‐19 on caregivers of childhood cancer survivors

Purpose: We sought to assess the impact of disruptions due to coronavirus disease 2019 (COVID‐19) on caregivers of childhood cancer survivors. Methods: A 13‐question survey containing multiple‐choice, Likert‐type, and free‐text questions on experiences, behaviors, and attitudes during the COVID‐19 outbreak was sent to childhood cancer caregivers and completed between April 13 and May 17, 2020. Ordered logistic regression was used to investigate relationships between demographics, COVID‐related experiences, and caregiver well‐being. Results: Caregivers from 321 unique families completed the survey, including 175 with children under active surveillance/follow‐up care and 146 with children no longer receiving oncology care. Overall, caregivers expressed exceptional resiliency, highlighting commonalities between caring for a child with cancer and adopting COVID‐19 prophylactic measures. However, respondents reported delayed/canceled appointments (50%) and delayed/canceled imaging (19%). Eleven percent of caregivers reported struggling to pay for basic needs, which was associated with greater disruption to daily life, greater feelings of anxiety, poorer sleep, and less access to social support (p < .05). Caregivers who were self‐isolating reported greater feelings of anxiety and poorer sleep (p < .05). Respondents who expressed confidence in the government response to COVID‐19 reported less disruption to their daily life, decreased feelings of depression and anxiety, better sleep, and greater hopefulness (p < .001). Conclusions: Caregivers are experiencing changes to medical care, financial disruptions, and emotional distress due to COVID‐19. To better serve caregivers and medically at‐risk children, clinicians must evaluate financial toxicity and feelings of isolation in families affected by childhood cancer, and work to provide reliable information on how COVID‐19 may differentially impact their children.

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Impact of the Outbreak of the COVID-19 Pandemic on Formal and Informal Care of Community-Dwelling Older Adults: Cross-National Clustering of Empirical Evidence from 23 Countries

Background: The COVID-19 pandemic has been dramatically affecting the life of older adults with care needs and their family caregivers. This study illustrates how the initial outbreak of the pandemic changed the supply of formal and informal care to older adults in European countries and Israel and assesses the resilience of these countries in providing support to their older populations by means of a mix of both types of care. Methods: We subjected data from the Survey of Health, Ageing and Retirement in Europe COVID-19 period (SHARE-COVID-19) across 23 European countries (including Israel) to descriptive and cluster analyses. Results: In the first wave of the outbreak, a significant proportion of older adults in European countries received informal help, with an increase in the frequency of informal help received from children, neighbors, friends, or colleagues and a decrease in that received from other relatives. In most countries, difficulties in receiving home care services from professional providers were reported. Seven clusters were identified, reflecting different combinations of changes in the formal/informal care provision. In most countries, informal care is more resilient than home care services that formal providers deliver. Since they are an essential source for sustainable care, their challenges related to care should be addressed. The impact of the pandemic does not follow the traditional characterization of welfare regimes. Conclusions: A clustering effort may yield more understanding of the priorities that future care policies should exhibit at the national level and may identify potential systems for policymakers to enhance sustainability of care for community-dwelling older adults.

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Impact of the covid-19 pandemic on family carers of older people living with dementia in Italy and Hungary

Background: The COVID-19 pandemic has had a major effect on both older people with dementia and families caring for them. Methods: This paper presents the results of an online survey carried out among Italian and Hungarian family carers of people with dementia during the first pandemic wave (May–July 2020, n = 370). The research questions were the following: (1) How has the pandemic changed the lives of family carers? (2) How did government restriction measures change the availability of care-related help? (3) What other changes did families experience? Results: Results show that about one-quarter of both subsamples experienced a deterioration in their financial status. A decline in both general and mental health was also reported. Due to “lockdown”, family carers’ burden increased substantially. Utilization of care-related help decreased, and the share of those left with no help increased in both countries. Cross-country differences emerged in terms of dementia care system, severity of the first pandemic wave, and measures put in place by governments. Findings outline the weaknesses of support structures and their country-specific vulnerabilities to a worldwide pandemic. Conclusions: To better protect people with dementia in the future, it is essential to strengthen their family carers, and support structures need to be re-evaluated and re-designed. 

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Impact of Social Isolation on People with Dementia and Their Family Caregivers

Background: People with dementia and their family caregivers may face a great burden through social isolation due to the COVID-19 pandemic, which can be manifested as various behavioral and clinical symptoms. Objective: To investigate the impacts of social isolation due to the COVID-19 pandemic on individuals with dementia and their family caregivers. Methods: Two semi-structured questionnaires were applied via telephone to family caregivers of people diagnosed with dementia in three cities in Argentina, Brazil, and Chile, in order to assess clinical and behavioral changes in people with dementia and in their caregivers. Results: In general, 321 interviews were conducted. A significant decline in memory function has been reported among 53.0%of people with dementia. In addition, 31.2%of individuals with dementia felt sadder and 37.4%had increased anxiety symptoms. These symptoms of anxiety were greater in individuals with mild to moderate dementia, while symptoms of agitation were greater in individuals with severe dementia. Moreover, compulsive-obsessive behavior, hallucinations, increased forgetfulness, altered appetite, and increased difficulty in activities of daily living were reported more frequently among individuals with moderate to severe dementia. Caregivers reported feeling more tired and overwhelmed during this period and these symptoms were also influenced by the severity of dementia. Conclusion: Social isolation during the COVID-19 pandemic triggered a series of negative behavioral repercussions, both for people with dementia and for their family caregivers in these three South American countries. 

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The Impact of COVID-19 Quarantine on Patients With Dementia and Family Caregivers: A Nation-Wide Survey

Background: Previous studies showed that quarantine for pandemic diseases is associated with several psychological and medical effects. The consequences of quarantine for COVID-19 pandemic in patients with dementia are unknown. We investigated the clinical changes in patients with Alzheimer’s disease and other dementias, and evaluated caregivers’ distress during COVID-19 quarantine. Methods: The study involved 87 Italian Dementia Centers. Patients with Alzheimer’s Disease (AD), Dementia with Lewy Bodies (DLB), Frontotemporal Dementia (FTD), and Vascular Dementia (VD) were eligible for the study. Family caregivers of patients with dementia were interviewed by phone in April 2020, 45 days after quarantine declaration. Main outcomes were patients’ changes in cognitive, behavioral, and motor symptoms. Secondary outcomes were effects on caregivers’ psychological features. Results: 4913 patients (2934 females, 1979 males) fulfilled the inclusion criteria. Caregivers reported a worsening in cognitive functions in 55.1% of patients, mainly in subjects with DLB and AD. Aggravation of behavioral symptoms was observed in 51.9% of patients. In logistic regression analysis, previous physical independence was associated with both cognitive and behavioral worsening (odds ratio 1.85 [95% CI 1.42-2.39], 1.84 [1.43-2.38], respectively). On the contrary, pandemic awareness was a protective factor for the worsening of cognitive and behavioral symptoms (odds ratio 0.74 [0.65-0.85]; and 0.72 [0.63-0.82], respectively). Approximately 25.9% of patients showed the onset of new behavioral symptoms. A worsening in motor function was reported by 36.7% of patients. Finally, caregivers reported a high increase in anxiety, depression, and distress. Conclusions: Our study shows that quarantine for COVID-19 is associated with an acute worsening of clinical symptoms in patients with dementia as well as increase of caregivers’ burden. Our findings emphasize the importance to implement new strategies to mitigate the effects of quarantine in patients with dementia.

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The Impact of Dementia Daycare Service Cessation Due To COVID-19 Pandemic

Objectives: This study aimed at revealing the caregiving challenges of the caregivers of people with dementia (PwD) during the COVID-19 pandemic when daycare service was stopped as an infection control measure, and discussed ways to help PwD and their family caregivers to maintain their well-being in the era of the pandemic. Methods: Between April and May 2020, a cross-sectional survey was conducted in 152 family caregivers of PwD who were clients of daycare service prior to the pandemic. The survey examined caregivers’ stress and challenges faced during daycare service cessation, their perceived needs for continuation of daycare service, and observed changes in functional status of PwD. Regression analyses were performed to explore the associated factors of caregiving stress and preference for continuation of daycare service. Results: Family caregivers of PwD experienced greater caregiving stress after cessation of daycare service. Infection was their main challenge in caregiving, and their physical and emotional health was adversely affected by the longer time commitment with PwD under the stay-home policy. Older age of caregivers, greater emotional and communication problems of PwD, and more time spent with PwD were associated with greater caregiving stress. More than one-third of the participants preferred the continuation of daycare service during the pandemic. Conclusions: Policy makers should consider the well-being of PwD and their caregivers when planning infection control measures. Daycare service with enhanced infection controlled measures should remain available to PwD during the COVID-19 pandemic.

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Impact of COVID-19 on the Mental Health and Well-Being of Latinx Caregivers of Children with Intellectual and Developmental Disabilities

Background: The COVID-19 pandemic has impacted the entire world in unprecedented ways. However, populations that have had a history of marginalization have experienced a more profound impact. One such group is Latinx families of children with intellectual and developmental disabilities (IDD) in the Unites States. Methods: In this study, we used a mixed methods approach to explore the impact of the pandemic on the mental health and well-being of Latinx caregivers of children with IDD. Results: Specifically, we (1) identified which social determinants of health are correlated with maternal caregivers perceived general health, mental health, and well-being; (2) explored the impact of the pandemic on families’ overall eating and physical activity routines; and (3) identified emergent themes from caregivers’ experiences during the pandemic. Thirty-seven Latinx caregivers participated in three interviews in which several validated instruments were administered. The results indicated that perceived social support, annual family income, food security, and receipt of financial benefits were correlated with fewer depressive symptoms. Annual family income was also significantly correlated with perceived general health. Most caregivers reported that the pandemic had placed a strain on their economic situation; increased their isolation; and disrupted their child’s therapeutic supports, online education, eating routines, and engagement in physical activity. Meanwhile, some caregivers reported positive changes as a result of the pandemic. Conclusions: Implications for future research and practice are discussed.

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Impact of COVID-19 on the Health and Well-being of Informal Caregivers of People with Dementia: A Rapid Systematic Review

Background: In December 2019, the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), or COVID-19, raised worldwide concern. Since then, the COVID-19 pandemic has negatively influenced health and wellness across the globe and caused nearly three million deaths. This study focuses on informal caregivers of people with dementia, a disease that affects about 50 million older adults worldwide and requires much caregiving support. Objective: Examine the current literature on the impact of COVID-19 on the health and well-being of informal caregivers for people with dementia. Method: This rapid review was conducted across five electronic databases for quantitative and qualitative articles published through March 15, 2021. Results: The 10 studies included in this review reported quantitative descriptive data from across the globe; however, no studies existed from the U.S. or East Asia countries. All of the studies examined the psychological rather than physical impact of COVID-19 and highlighted risk and protective factors in the areas of psychosocial (resilience, neuropsychiatric, and social isolation), sociodemographic (gender and education), and environmental (home confinement, living arrangement, and dementia stage). Conclusion: COVID-19 has had a considerable negative impact on the psychological well-being of informal caregivers of people with dementia, namely causing more depression and anxiety than pre-pandemic. 

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Impact of COVID-19 on LGBTQ+ Cancer Survivors' and Caregivers' Perceptions of Formal and Informal Social Support (SCI952)

Background: The COVID-19 pandemic has made it difficult for many cancer survivors and their caregivers to access support from providers and informal networks. This may be particularly true for LGBTQ+ groups, who are under-represented in oncology and palliative care research and often overlooked in clinical oncology and palliative care. Research Objectives: We sought to better understand how the pandemic is affecting LGBTQ+ cancer survivors' and caregivers' access to and perceptions of formal and informal support. Methods: Qualitative data were collected via open-ended survey items, interviews, and a focus group with LGBTQ+ cancer survivors and caregivers (n = 19). Questions assessed their perceptions of the impact of COVID-19 on support, including specific challenges for LGBTQ+ survivors and their caregivers. Interview and focus group audio data were transcribed, collated with survey responses, descriptively coded, and summarized. Results: Participants included 11 survivors and 8 caregivers (1 was both) aged 21-81 (M = 41.9); 15 were female, 3 male, and 1 nonbinary; 3 were transgender; 17 were LGBTQ+ (including 4 bisexual, 2 pansexual and 2 queer) and 2 were heterosexual (both caregiving parents). Participants described numerous concerns: 1) anxiety about inclusive care being seen as something "extra"; 2) decreased visibility; 3) potential discrimination without caregiver advocacy during visits; 4) decreased communication with providers; 5) lost opportunities for community connection; 6) lack of relevant support groups and resources; 7) a care landscape changing without meaningful input from LGBTQ+ groups. Conclusion: The pandemic may exacerbate or create new unmet support needs for LGBTQ+ cancer survivors and caregivers. Implications for Research, Policy, or Practice Providers and organizations serving survivors and caregivers should be aware that minority cohorts, including LGBTQ+ survivors and caregivers, may experience increased isolation and marginalization during the pandemic. Their feedback should be actively solicited and incorporated into pandemic-related planning to inform care.

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Impact of COVID-19 on Dementia Caregivers and Factors Associated With their Anxiety Symptoms

Background: Little is known about the family experience of caregiving for persons living with dementia (PLWD) at home during the COVID-19 pandemic. Objectives: The purpose of this study was to examine the influence of COVID-19 on concerns of current family caregivers of PLWD. Methods: Study participants were recruited from the parent study, Healthy Patterns Clinical Trial (NCT03682185). Results: Data was collected from 34 caregivers via semi-structured telephone interviews. Over 70% of the study participants reported worrying about spreading COVID-19 to the PLWD, 41% reported they had taken on additional caregiving duties for others in their family since COVID-19, and 62% reported one or more anxiety symptoms. Dementia caregivers who reported anxiety symptoms reported lower scores on functional independence of their care recipients compared to dementia caregivers who did not report anxiety symptoms (p=0.036). Conclusions: Health care professionals should be alert to the concerns expressed by dementia caregivers for their well-being during this unprecedented pandemic.

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“I Could Not Manage This Long-Term, Absolutely Not.” Aging in Place, Informal Care, COVID-19, and the Neighborhood in Flanders (Belgium)

Background: Public health and care policies across OECD (Organisation for Economic Co-operation and Development) countries increasingly encourage aging in place, enabled by both formal care networks, and informal (family) care and social solidarity in the neighborhood. However, little is known about how a person’s neighborhood might affect their aging in place. The COVID-19 crisis unintendedly offered a good opportunity to observe the neighborhood’s role in the provision of care. Since formal care services were often limited during the lockdown, informal caregiving may have increased. However, intergenerational contacts in and outside of the household were strongly discouraged by governments worldwide, adding another layer of complexity to caregiving. Objectives: The aim of this qualitative study was to assess how informal caregivers in Flanders managed to provide care to their care receivers, and what role the neighborhood played in this provision of care. Methods: Sixteen qualitative Skype and telephone interviews with informal caregivers were conducted between June and December 2020 to understand their experiences and coping strategies. Findings: Overall, most respondents increased their frequency of caregiving during the first lockdown. They took on the extra care needs during the lockdown themselves, and did not actively invoke any kind of neighborhood support. The significance of the neighborhood seemingly remained limited. This was often not because no help was offered, but rather due to a sense of pride or the fear of infection, and an increased effort by family caregivers. 

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How Employers and States Can Support the Essential Workforce of Family Caregivers

Family caregiving is a shared experience across people of all age groups, cultures, incomes, and education levels in the United States. Roughly 41 million Americans are serving as a caregiver of an older adult. Many family caregivers, sometimes called informal or unpaid caregivers, are relatives, friends, and neighbors who provide ongoing assistance to adults aged 50 and older with health or functional needs.

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Health service experiences and preferences of frail home care clients and their family and friend caregivers during the COVID-19 pandemic

Objective: The COVID-19 pandemic has brought about a major upheaval in the lives of older adults and their family/friend caregivers, including those utilizing home care services. In this article, we focus on results from a qualitative component added to a pragmatic randomized controlled trial that focuses on the experiences of our study participants during COVID-19. Methods: A total of 29 participants responded to the COVID-19 related questions focused on their health services experiences and preferences from March-June 2020 including 10 home care clients and 19 family/friend caregivers in the provinces of Ontario and Nova Scotia, Canada. Results: Many participants were affected drastically by the elimination or reduction of access to services, highlighting the vulnerability of home care clients and their caregivers during COVID-19. This took an emotional toll on home care clients and increased the need for family/friend caregiver support. While many participants expressed reduced desire to utilize residential long-term care homes, some caregivers found that passive remote monitoring technology was particularly useful within the COVID-19 context. Conclusions: Our results provide important insights into the ways the older adults and their caregivers have been affected during the COVID-19 context and how to better support them in the future.

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Grieving in a Pandemic: How COVID-19 Has Impacted Bereavement for Family Caregivers of Hospice Cancer Patients (SCI948)

Objectives: 1. Analyze 1-4 aspects of bereavement that have been impacted by COVID-19 for family caregivers of advanced cancer hospice patients. 2. Evaluate the strategies implemented by family caregivers to overcome isolation and maintain connectedness during the Coronavirus pandemic. Background: As Coronavirus has spread to the US, it has changed family caregivers' hospice experiences including bereavement. To examine the impact of a global pandemic on connectedness and isolation in bereavement among hospice family caregivers using automated phone diaries. Aim: We examined phone diaries of bereaved hospice family caregivers of cancer patients from a larger multi-site longitudinal study for COVID and non-COVID related references to isolation and connectedness. Methods: Participants were asked to complete daily phone diaries through an automated system from the time they consented to 6 months after the patient's death. Recordings were selected between March 13 and May 15, 2020 from bereaved caregivers. Summative content analysis using deductive codes was conducted to examine diaries for physical/social isolation and connection. Isolation was defined as having no other person in close physical or social contact during bereavement, while connection was defined as feeling attached to others during bereavement. Results: Bereaved caregivers' diaries (N=6; bereavement range=2-7 months) were analyzed. Each caregiver completed audio diaries over the bereavement period (range=1 to 42). Of the 59 diaries, 32 (54.24%) made reference to the coronavirus pandemic. Coronavirus references were mentioned by all 6 participants. COVID-related connection was identified 15 times (25.42%), while COVID-related isolation was identified 32 times (54.24%). Non-COVID related connection was identified 20 times (62.5%), while non-COVID related isolation was coded only twice (13.33%). Conclusions and implications: Findings from this study suggest COVID-related social isolation was integral to the bereavement experiences of family caregivers. However, despite the pandemic, caregivers expressed maintaining connectedness to others. This study has implications for hospice support services for bereaved caregivers during the pandemic.

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From Burden to Depressive Symptoms in Informal Caregivers during the COVID-19 Pandemic: A Path Analysis

Background: The objective of this study was to assess the complex relationship between the multiple determinants of the caregiving process, the caregiver burden, and depression during the COVID-19 pandemic in Serbia. Methods: A cross-sectional study was conducted on a nationally representative sample (n = 798) during the COVID-19 pandemic in Serbia from March to September 2020. A nine-section questionnaire designed for this study included the characteristics of caregivers, characteristics of care and care recipients, COVID-19 related questions, and the following standardized instruments: 12-Item Short-Form Health Survey, Fatigue Severity Scale, Activities of Daily Living Scale and Instrumental Activities of Daily Living Scale, Zarit Caregiver Burden Scale, and Beck Depression Inventory. Path analysis was used for the simultaneous assessment of the direct and indirect relationships of all determinants. Results: More than two thirds (71.9%) of informal caregivers experienced a burden, and more than one quarter (27.1%) had depression symptomatology. Self-rated physical health, need for psychosocial support, and caregiver burden were the main direct predictors of depression. Multiple determinants of the caregiving process had indirect effects on depressive symptomatology via the caregiver burden as a mediating factor. Conclusions: The subjective burden presented a significant risk factor for depressive symptoms in caregivers during the COVID-19 pandemic. The provision of psychosocial support was identified as an important opportunity to reduce depressive risk in informal caregivers.

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Financial strain among unpaid family caregivers of frail elders in community

Background: In the United States, 8 out of 10 elders, 65 or older, have at least one chronic disease. Their care likely falls mostly to family members; many experience financial strain associated with providing that care. Informal caregiving saves the American healthcare system money. The economic value of family caregivers is estimated at $350 billion, exceeding the total amount spent by either Medicare ($342 billion) or Medicaid ($300 billion) The COVID-19 pandemic makes this issue even more relevant. Many of those recovering from this virus, whatever their age and previous health history, find it is a very long process. This study examined correlates of financial strain among 956 unpaid family caregivers using the framework of the stress process model. Method: The study utilized the caregiver survey data set from the 1999 National Long-Term Care Survey. Results: indicate that a caregiver's perceived overload had the largest effect on greater financial strain. Variations and dynamics in caregiver financial strain are particular to the caregiver's family relationship. Conclusion: Identifying correlates of caregiver financial strain can provide an important impetus for tackling the causes and providing effective interventions.

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Family-centered care with visitor limitations

Communication and support for patients and family members can be challenging, especially when in-person visitation is limited or eliminated entirely. This article discusses how healthcare teams can promote family- centered care during periods of limited visitation.

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Family‐centered care during a pandemic: The hidden impact of restricting family visits

The author discusses the importance of family-centered approach to care in nursing care, as well as the hidden effects of restricting family visits during the COVID-19 pandemic. Topics include the implementation of infection prevention and control (IPC) measures in hospitals, as well as the importance of effective communication, shared decision-making, and expert care to dying patients and their families.

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Family rules, routines, and caregiver distress during the first year of pediatric cancer treatment

Objective: A new diagnosis of pediatric cancer may disrupt family functioning. The current study aimed to describe changes in family rules and routines during the first year of pediatric cancer treatment, and to explore associations with demographics, illness factors, and caregiver distress. Methods: This exploratory mixed‐methods, cross‐sectional study examined 44 primary caregivers of youth in treatment for a new cancer diagnosis in 2019 and 2020, before the onset of the COVID‐19 pandemic. Caregivers completed validated questionnaires assessing demographic and child illness characteristics, psychosocial distress, and cancer‐related stressors, and participated in a semi‐structured interview about family rules and routines. Results: Caregivers reported changes in bedtime, mealtime, and school routines, relaxed behavioral expectations and rules around screen time, and new rules and routines around treatment, medications, and infection control. Caregivers with elevated levels of psychosocial distress reported more changed routines than caregivers with low levels of psychosocial distress. Caregivers who endorsed more cancer‐related stressors reported more new rules and routines than those who reported fewer cancer‐related stressors. Demographic and illness factors were not significantly associated with the number of changed, new, or stable family rules and routines. Conclusions: Families may relax rules and routines during the first several months of diagnosis, and this may be related to side effects of treatment and limited caregiver capacity. The long‐term impact of changes in family rules and routines during cancer treatment warrants further study given that accommodating parenting strategies have been associated with adverse short‐ and long‐term child health and behavior outcomes.

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Family Caregiving During the COVID-19 Pandemic

Background and Objectives: The coronavirus disease 2019 (COVID-19) pandemic has negatively affected persons with existing chronic health conditions. The pandemic also has the potential to exacerbate the stresses of family caregiving. We compare family caregivers with noncaregivers on physical, psychosocial, and financial well-being outcomes during the pandemic and determine family caregivers most at risk for adverse outcomes. Research Design and Methods: We conducted a cross-sectional online survey of 576 family caregivers and 2,933 noncaregivers from April to May 2020 in Pittsburgh, PA region with a national supplement. Outcome measures included concurrent anxiety, depression, fatigue, sleep disturbance, social participation, and financial well-being and perceived changes due to COVID-19 (loneliness, financial well-being, food security). We also measured sociodemographic, caregiving contextual variables, and COVID-19-related caregiver stressors (COVID Caregiver Risk Index). Results: Controlling for sociodemographics, family caregivers reported higher anxiety, depression, fatigue, sleep disturbance, lower social participation, lower financial well-being, increased food insecurity (all p <.01), and increased financial worries (p =.01). Caregivers who reported more COVID-19-related caregiver stressors and disruptions reported more adverse outcomes (all p <.01). In addition, caregivers who were female, younger, lower income, providing both personal/medical care, and providing care for cognitive/behavioral/emotional problems reported more adverse outcomes. Discussion and Implications: Challenges of caregiving are exacerbated by the COVID-19 pandemic. Family caregivers reported increased duties, burdens, and resulting adverse health, psychosocial, and financial outcomes. Results were generally consistent with caregiver stress–health process models. Family caregivers should receive increased support during this serious public health crisis.

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Family caregivers of patients with Alzheimer's disease during the COVID‐19 journey

As is the whole world, we are also fighting the coronavirus (COVID‐19) pandemic in Turkey, which complicates and affects all aspects of life. The pandemic can negatively psychosocially affect every segment of society. To successfully get through this pandemic, it is important to consider all individuals in society, including ourselves. Patients with Alzheimer's disease are considered vulnerable, more helpless; they do not have the capacity to make the right decisions and they need the care and help of someone else. The needs of relatives who provide care for these patients may have been forgotten during this pandemic.

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Family Caregivers' Experiences and Changes in Caregiving Tasks During the COVID-19 Pandemic

Objectives: The purpose of this descriptive study was to describe family caregivers' experiences and changes in caregiving tasks and approaches during the COVID-19 pandemic. Methods: Using web-based strategies, 69 family caregivers of adults with chronic or disabling conditions were recruited and completed an online survey about positive and negative caregiving experiences, and ways in which caregiving has changed. Data were analyzed using descriptive statistics (structured questions) and conventional content analysis (open-ended responses). Results: Participants reported concerns about their loved one's physical and mental health, the limited access to other caregiving sources, and the limited opportunities to maintain personal well-being. Caregiving tasks completed more than usual included providing emotional support, shopping for groceries and essentials, and contacting healthcare providers. Participants modified their caregiving approach by assuming added responsibilities, leveraging technology, and managing a new caregiving routine. Conclusions: Findings indicate that family caregivers experienced additional caregiving challenges and changed caregiving tasks considering the limited resources available.

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Family Caregiver Access of Online Medical Records: Findings from the Health Information National Trends Survey

Over 40 million Americans provide unpaid support to an adult relative for tasks including accompanying them to doctor visits and/or supporting them in medical decisions. Over the past several years—and particularly amid COVID-19—there has been increasing interest and demand for caregivers to be more involved in communication with providers to support patient engagement and patient-centered care as evidenced by recent state and federal policy initiatives to expand support to caregivers. One way to improve communication between caregivers and providers is through an online medical record (patient portal), which enables patients to acquire important health information and communicate with medical providers. However, caregivers’ access to adult care recipients’ portals is limited and varies across healthcare organizations and states. The objective of this study was to determine the relationship between socio-demographic attributes and responsibilities of caregivers and likelihood of (a) communicating with recipients’ providers and (b) accessing recipients’ online records.

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The Experiences of Family Members of Ventilated COVID-19 Patients in the Intensive Care Unit: A Qualitative Study

Background: Visitor restrictions caused challenges for family members when their loved ones had coronavirus disease (COVID-19) and were ventilated. Limited studies have reported on family members' experiences and support needs. Aim: To explore the experiences and support needs of family members of ventilated COVID-19 patients in the intensive care unit (ICU). Design: Exploratory, qualitative design, using in-depth individual telephone interviews, and analyzed using thematic analysis. Setting/Participants: Ten family members of adult COVID-19 patients in the ICU. Result: Seven key themes represented family members' experiences: (a) reactions to the COVID-19 diagnosis, (b) COVID-19 as a destabilizing force on the family unit, (c) COVID-19's effects on bereavement outcomes, (d) desperately seeking information, (e) family member needs, (f) conflicting feelings about video calls, and (g) appreciation of care. Family members' feelings about the patient's diagnosis and how the virus was contracted exacerbated their stress and anxiety. They struggled to feel informed about care that they could not witness and had difficulty understanding information. Family members reported that video calls were unhelpful. While these experiences made them question the quality of care, they expressed their appreciation of the frontline healthcare providers taking care of their loved ones. Conclusion: The stress and uncertainty of family members of critically ill patients with COVID-19 were influenced by their inability to feel connected to the patient and informed about care. Healthcare providers should assess each individual family's burden and preferences, and this should include establishing structured, timely, and consistent communication regarding patient care during the pandemic including early referral to palliative care.

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Experiences of family caregivers of patients with COVID-19

Background: Family caregivers of patients with COVID-19 face many challenges that affect their physical and mental health. Aim: The aim of the present study was to explore experiences of family caregivers of patients with COVID-19. Methods: This phenomenological study was performed based on 13 family caregivers who had experience in home caring for patients with COVID-19. Data were collected through purposive sampling with in-depth semi-structured interviews. The Colaizzi's 7-step method was used to determine themes. The MAXQDA10 software was used to manage qualitative data analysis. Results: Thirteen family caregivers participated. Five main themes describe family caregivers' experiences of caring for patients with COVID-19: nature of the disease; unmet needs; unpleasant physical, psychological, and social experiences; care facilitators and positive experiences. Conclusion: Information and financial support for COVID-19 should be provided to family caregivers. Also, community members should embrace patients and family caregivers and reinforce the positive experiences of caregivers.

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The Experiences of Caregivers of Persons Living with Dementia in Jamaica during COVID-19

Background: This article provides descriptive insights of the experiences of family caregivers of persons living with dementia during the COVID-19 pandemic. Data were generated as part of a qualitative cross-national project to explore the costs and consequences of providing unpaid dementia care. Methods: Participants in Jamaica, who were recruited using community gatekeepers, information booths at health fairs, conferences, and other outreach events, were contacted by telephone to discuss their experiences of the pandemic. When face-to-face in-depth interview data collection was suspended due to the pandemic, ethical approval was received to contact all research participants who were informal unpaid family caregivers, both those whose care recipients had died and those who were active caregivers (N = 19). Participants in this study were the 10 active family caregivers (nF = 8; aged 45+; 60% from high socio-economic status). Their updates and reflections during these calls were documented in fieldnotes and analyzed for key themes. Findings: Data showed that the pandemic has illustrated the direct costs, both financial and otherwise, that informal dementia carers bear in Jamaica. It also intensified pre-existing challenges faced by family carers. We provide recommendations for sustainable support for family carers. 

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Examining Dementia Family Caregivers’ Forgone Care for General Practitioners and Medical Specialists during a COVID-19 Lockdown

Background: The present study aimed to assess dementia caregivers’ reports of the prevalence and correlates of forgone care regarding visits to a general practitioner (GP) and to a specialist during the COVID-19 lockdown in Israel, using Andersen’s Behavioral Model of Healthcare Utilization. Methods: A cross-sectional study using an online survey was conducted with 73 Israeli family caregivers of persons with dementia residing in the community (81% Jews, 86% female, mean age = 54). Results: Overall, one out of two participants reported having to delay seeking needed help from a GP or a specialist for themselves, as well as for their relatives with dementia, during the COVID-19 lockdown period. Among the predisposing factor, education was associated with caregivers’ reports regarding forgone care for themselves as well as for their loved ones. Living with the care-receiver and income level were the enabling factors associated with forgone care for caregivers. Finally, feelings of burden were associated with caregivers’ forgone care and feelings of loneliness and perceptions of the care-receiver’s cognitive functioning were associated with care-receivers’ forgone care. Conclusions: Our findings show that it is essential that this population receive appropriate practical and emotional support at times of distress and crisis to enable them to continue with their caregiving role.

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Evaluation of depression symptoms among caregivers of children that take therapy in the national center for children rehabilitation and treatment during COVID-19 pandemic

Introduction: Raising a child with neurodevelopmental disorder is very challenging. Furthermore COVID-19 pandemic can increase stress levels especially among people that suffer from mental health disorders. On of the high risks group are children with neurodevelopmental disorders. Studies show that these difficult, challenging times have had a negative impact on most families, which have a child with neurodevelopmental disorders. Objectives: Evaluation of depression symptoms among caregivers of children that take therapy in the National Center for Children Rehabilitation and Treatment (NCCRT) during COVID-19 pandemic. Methods: The study was conducted during a two-month period March-April 2020. The sample involved 110 individuals, relatives, of children that were taking educative and rehabilitation therapy in NCCRT during last year, ambulatory or inpatients. Data were collected by clinical records and phone interviews with children’s caregiver. Instrument we used were: Demographic inventory and Hamilton Anxiety Rating Scale for anxiety symptom evaluation. All data were statistically analyzed through excel. Results: Most of individual interviewed, whom are responsible for children wellbeing were their parents, 69% of them. 56% of individuals were among 31-45 years old and 92% of them were women. Depression symptoms were slightly present. We noticed that depressive symptomatology was a bit worse in caregivers in urban areas compared with ones in rural areas. Conclusions: It is necessary supporting with special attention caregivers whom have depressive symptoms. Yet has to be evaluated the connection, if it’s present, between parents with depressive symptoms and children progress, for ones that are being supported with development therapy.

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Evaluating service user & carer experience of videoconferencing software during COVID-19 pandemic

Aims: To evaluate service user and carer experience of use of videoconferencing software (Microsoft Teams) during MDT meetings. To identify specific areas for improvement. To make changes based on these recommendations. Method: 2 surveys were distributed to inpatients and their carers on a functional Older Adults inpatient ward (n = 21), including quantitative and qualitiative questions. The results from these were compiled, and on review, mutliple recommendations for improvement were made. Result: 90% of service users find it helpful to have family present over video conferencing software during their MDT meetings, and 91% of carers feel involved and able to contribute when they do join in this way. 81% of carers have the technology available at home to use such software, but only 55% of them feel confident using it. 73% need more information on its use. 60% of carers referenced poor staff skills with software as a barrier to its use, and 60% referenced poor organisation of meetings. 2 service users raised issue with the size of a small laptop screen not allowing them to see who was actually present over MS Teams, although none were concerned with issues around confidentiality and the use of such softwareSeveral service users, carers and members of community teams identified poor sound quality as an issue, both when joining over the software, and when present in the room. Conclusion: Widespread use of videoconferencing software such as MS Teams is likely to continue beyond the end of the COVID-19 pandemic. Through discussion with the ward team, the IT department, the training department, and the local council, multiple changes were made to the service, as below. These form a recommended list of areas for improvement in other services. Availability of videoconferencing equipment (in addition to laptop), dedicated videoconferencing microphone/speaker to improve sound quality, display screen, webcam, organisation of meetings, designating a chairperson to admit and introduce all participants, designating a meeting organiser to invite all necessary participants, staff skills, local audit of staff familiarity with software, introduction of mandatory training for staff on use of software, carer skills & access to equipment, information and support available from well-trained staf, liaison with other organisations including council and third sector about availablity of equipment loans and training for carers

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Death and Grieving for Family Caregivers of Loved Ones With Life-Limiting Illnesses in the Era of COVID-19: Considerations for Case Managers

Purpose: Family caregivers of a loved one with a life-limiting or terminal illness are often overwhelmed by, and underprepared for, their responsibilities. They often need help from family members and friends to provide comprehensive care. When death occurs, funerals and other death-related rituals bring family and communities together to honor the life and mourn the death of a loved one and provide needed support to family and caregivers. These collective rituals are often deeply rooted in culturally-bound values and can facilitate grief and help make sense about loss. Rituals act as bridge-building activities that allow people to organize and appraise emotions, information, and actions after a loss. With the emergence of the coronavirus disease-2019 (COVID-19) pandemic and the recommended restrictions to reduce infection and transmission, family members and caregivers are often faced with weighing options for honored rituals to help them grieve. Grieving during the pandemic has become disorganized. The purpose of this article is to provide case managers and other clinical staff with recommendations on guiding caregivers/families through safety precautions when a loved one dies either because of a life-limiting illness or from COVID-19 during the pandemic using guidelines from the Centers for Disease Control and Prevention (CDC). The authors also present information about complicated grief and ways to support coping with death and suggest safe alternatives to traditional death-related rituals and funerals in a COVID-19 era. Primary Practice Setting(s): Primary practice settings include home health care, hospice, hospital discharge planning, case management, and primary care. Findings/Conclusions: Precautions necessary in a COVID-19 era may add anxiety and stress to an already difficult situation of caring for loved ones at end-of-life and grieving with their loss. Utilization of CDC guidelines lessens the risk of infection while honoring loved ones' wishes and cultural traditions surrounding death and burial. Recognition of social and spiritual connections that comfort mourners must also be considered. Implications for Case Management Practice: Safety precautions are necessary for families and informal caregivers when death occurs during the COVID-19 era. We need to understand the various constraints of existing resources associated with the death of a loved one (capacity limitations at funeral home, delayed memorial services) and devise creative alternatives. We must acknowledge the increased potential for delayed/prolonged/complicated grief. Identification of resources to support caregivers/families in coping with grief and loss during the pandemic restrictions is needed—mobilizing support in novel ways.

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The Crisis Facing Older People Living with Neurodiversity and Their Aging Family Carers: A Social Work Perspective

This commentary addresses barriers to care among older adults living with neurodiversity (ND), and their aging family carers in the context of the COVID-19 pandemic in Canada. Factors contributing to inequities are described and the significant negative consequences of current policy decisions on the social and mental health of older adults with ND and their aging family carers are highlighted. The commentary calls for a collective social work response that highlights the critical role of support and advocacy necessary to redress social exclusion. 

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Covid-19 vaccine literacy of family carers for their older parents in Japan

Background: In super-ageing Japan, COVID-19 vaccinations were starting to reach older people as of June 2021, which raises the issue of vaccine literacy. This study focuses on family members who work and also care for their older parents, as they are at risk of COVID-19 and also risk transmitting COVID-19 to the parents they care for and potentially influencing their parents’ vaccine uptake. Such family carers are central to the approach in Japan to achieving a sustainable and resilient society in response to ageing. Contrasting family carers’ COVID-19 vaccine literacy with their overall health literacy provides insights into their preparedness for COVID-19 vaccinations. The purpose of this study is to understand how vaccine literacy, compared to health literacy, varies across family carers and the sources of information they use. Methods: Through a cross-sectional online survey, family carers’ vaccine literacy, health literacy and their sources of information, including mass media, social media, health and care professionals, family, colleagues, friends, and others, were assessed. The participants’ (n = 292) mean age was 53, with 44% women, and an average of 8.3 h per week caring for their parents. Results: Notwithstanding the increased risks from COVID-19 with age, COVID-19 vaccine literacy relative to health literacy for older family carers is lower on average, higher with increased provision of care, and more variable, resulting in a substantial proportion of older family carers with relatively low vaccine literacy. Conclusions: At this stage of vaccine rollout in Japan, family carers’ sources of information to inform COVID-19 vaccine literacy is distinct, including more national and local mass media versus less health and care professionals and informal networks, which indicates the importance of tailored health communication strategies to enhance vaccine literacy. 

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COVID-19 and UK family carers: policy implications

Background: Informal (unpaid) carers are an integral part of all societies and the health and social care systems in the UK depend on them. Despite the valuable contributions and key worker status of informal carers, their lived experiences, wellbeing, and needs have been neglected during the COVID-19 pandemic. Methods: In this Health Policy, we bring together a broad range of clinicians, researchers, and people with lived experience as informal carers to share their thoughts on the impact of the COVID-19 pandemic on UK carers, many of whom have felt abandoned as services closed. Discussion: We focus on the carers of children and young people and adults and older adults with mental health diagnoses, and carers of people with intellectual disability or neurodevelopmental conditions across different care settings over the lifespan. Conclusion: We provide policy recommendations with the aim of improving outcomes for all carers. 

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COVID-19 and Long-Term Care: the Essential Role of Family Caregivers

Background: Those most at risk from severe COVID-19 infection are older adults; therefore, long-term care (LTC) facilities closed their doors to visitors and family caregivers (FCGs) during the initial wave of the COVID-19 pandemic. The most common chronic health condition among LTC residents is dementia, and persons living with dementia (PLWD) rely on FCGs to maintain their care provision. This study aims to evaluate the impact of visitor restrictions and resulting loss of FCGs providing in-person care to PLWD in LTC during the first wave of the COVID-19 pandemic. Method: An online survey and follow-up focus groups were conducted June to September 2020 (n=70). Mixed quantitative (descriptive statistics) and qualitative (thematic analysis) methods were used to evaluate study data. Results: FCGs were unable to provide in-person care and while alternative communication methods were offered, they were not always effective. FCGs experienced negative outcomes including social isolation (66%), strain (63%), and reduced quality of life (57%). PLWD showed an increase in responsive behaviours (51%) and dementia progression. Consequently, 85% of FCGs indicated they are willing to undergo specialized training to maintain access to their PLWD. Conclusion: FCGs need continuous access to PLWD they care for in LTC to continue providing essential care.

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Contradictory responses to the COVID-19 pandemic in amyotrophic lateral sclerosis patients and their families and caregivers in Japan

Objective: The coronavirus disease 2019 (COVID-19) pandemic has resulted in a shortage of medical resources, including ventilators, personal protective equipment, medical staff, and hospital beds. We investigated the impact of COVID-19 in amyotrophic lateral sclerosis (ALS) patients, their families, caregivers, and medical experts. Methods: We conducted a nationwide ALS webinar about COVID-19 in May 2020 and sent a questionnaire to those enrolled. Results: A total of 135 participants (31 ALS patients; 23 families and caregivers of ALS patients; 81 medical experts) responded to this cross-sectional self-report questionnaire. The results showed that tracheostomy and invasive ventilation (TIV) was used in 22.6% of ALS patients, whereas 77.4% of ALS patients were not under TIV. Among non-TIV patients (n=24), 79.2% did not want TIV in the future. However, 47.4% of non- TIV patients not wanting a tracheostomy in advanced stages replied that they would want an emergency tracheostomy if they developed COVID-19-related pneumonia. These results suggest that ALS patients may be receptive to emergency treatments for reasons other than ALS. In addition, approximately half of the ALS patients agreed with the policy of not ventilating the elderly or ALS patients in case of a ventilator shortage. Furthermore, compared with medical experts, few ALS patients reported that the chance for ALS patients to obtain work was higher due to the increasing availability of remote work. Conclusions: This survey indicates that the COVID-19 pandemic might be associated with increased distress about access to care and work, inducing contradictory responses and potential hopelessness among ALS patients. 

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Concerns of Family Caregivers during COVID-19: The Concerns of Caregivers and the Surprising Silver Linings

Background: COVID-19 has had an enormous impact on older people around the world. As family caregivers provide a good portion of the care for older people, their lives have been drastically altered by COVID-19 too. Our study is an in-depth exploration of the greatest concerns of family caregivers in the United States during COVID-19, as well as their perspectives on the benefits of caregiving during this global pandemic. Methods: We conducted in-depth interviews with a diverse sample of 52 family caregivers in the United States between May and September of 2020 over video conferencing using a semi-structured interview guide. Thematic analysis was conducted to ascertain our participants’ perceptions. Findings: Caregiver’s concerns were organized into six main themes, including social isolation, decline in mental health, decline in physical and cognitive functioning, keeping their family members safe from COVID-19, lack of caregiving support, and caregiving stress. The themes related to the benefits of caregiving during COVID-19 included: enjoyed the slower pace, increased time to spend together, deepened relationships, recognizing the resilience of family members, and caregiving innovations. Conclusions: Our in-depth study helps social workers understand the nature of caregiving stress during COVID-19, as well as the positive aspects of caregiving, even during a global pandemic.

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Community and informal care providers at the heart of universal health coverage in sub-saharan africa: A position paper

Globally, increased demand on often scarce healthcare resources and those challenges incumbent in responding to the coexistence of infectious and non-communicable diseases warrant the need to address persistent health inequities. Understanding the complex intersectionality of vulnerability and reaching those in most critical need of healthcare lies at the heart of fostering and sustaining resilient healthcare systems. Harnessing the long-recognised value of Community and Informal Care Providers (CICPs) is instrumental to Universal Health Coverage (UHC). The present COVID-19 context serves as a poignant example of where access to formal healthcare services by many has become increasingly difficult. Here, the value of informal or volunteer-led health services has been a lifeline for many. For several decades, formal reportage has evidenced the established role of CICPs, particularly across Sub-Saharan Africa with quantifiable efficacy across a number of domains, such as, maternal and child health, neglected tropical disease prevention, tuberculosis care and malaria control. CICPs have been sustainable and effective as a conduit between the formal and informal health sectors, and between health facilities and the remotest of communities. Maximising the function of CICPs relies on socio-culturally, geographically sensitive, and bespoke support; psychosocial, practical, and logistical capacitation coupled with situationally and culturally appropriate monitoring and evaluation. The Astana Declaration highlights the centrality of building on existing knowledge, insight and resource. We therefore argue that CICPs are indispensable in Africa’s move towards UHC, and hold promise for acceptable, accessible, affordable, and quality healthcare to everyone who needs to get, be and stay healthy. 

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Cocooning against COVID‐19: The argument for vaccinating caregivers of patients with cancer

Current national COVID‐19 vaccination guidelines and recommendations focus vaccine guidance on patients with cancer. In this COVID‐19 vaccination race, “cocoon vaccination” strategies which include informal caregivers and household contacts as priority groups for SARS‐CoV‐2 vaccination could be an additional strategy used to protect patients with cancer who may have limited immune responses to current vaccinations. Medical systems specializing in cancer care should support education and vaccination campaigns which target informal caregivers and household contacts in addition to cancer patients.

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Challenges Facing Family Caregivers of Children With Disabilities During COVID-19 Pandemic in Palestine

Background: COVID-19 has caused great changes in all aspects of life which affected all people especially vulnerable groups such as children with disabilities (CWD) and their families. Objective: This study aimed to examine the challenges facing caregivers of CWD during the pandemic, and to explore these challenges from various physical, social, psychological, and financial aspects. Methods: A cross-sectional design was conducted in Palestine, a total of 130 caregivers of CWD completed a survey consisting of demographic and clinical characteristics questionnaire and the short version of the burden scale for family caregivers (BSFC-s) between March and May 2021. Results: Most of the caregivers were mothers (76.9%), the mean age of the children was (6.09 ± 3.43 years). The majority (88.5%) of the caregivers felt physically exhausted, about (75.4%) had decreased living standards, and (86.2%) indicated that caregiving is taking their strength. A high burden score was recorded, the mean BSFC-s score was 20.17 ± 5.57. Significant differences in BSFC-s scores were recorded based on the type of disability, and child’s ability to take care of oneself, P <.05. The total scores of the BSFC-s were positively correlated with the physical, social, psychological, and financial challenges facing the caregivers (P <.001). Conclusions: COVID-19 has caused increased burdens on the caregivers of CWD and a negative impact on the child’s mobility accompanying a lack of access to health and rehabilitation services. Vital factors are to be considered in developing strategic health and rehabilitative plans for promoting better care for caregivers and their CWD during lockdown restrictions time. 

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Challenges and complexities of meeting family needs in the intensive care unit

Whether a planned or unexpected admission, having a relative in the intensive care unit (ICU) can be a time of turmoil and extreme stress for family members as well as patients. Research has identified the increased risk relatives face of developing symptoms of post-traumatic stress disorder (PTSD), which can be felt long after their loved one has been discharged from the ICU. Family dysfunction as well as physical, emotional, spiritual, and financial distress have also been reported as adverse outcomes attributable to a family member's admission to the ICU. Before strategies can be implemented to address or mitigate the risk of adverse outcomes developing, it is imperative to further understand the family members’ experience and needs. Using meta-aggregative methods, a qualitative synthesis published in this issue of JBI Evidence Synthesis reports on the multifaceted needs of family members at this time, and provides recommendations for how qualitative findings can be translated to practice environments.

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Caring for People With Dementia Under COVID-19 Restrictions: A Pilot Study on Family Caregivers

Introduction: The present pilot study examined to what extent the COVID-19 lockdown affected the behavioral and psychological symptoms of dementia (BPSD) in people with dementia and worsened their family caregivers’ distress. The associations between changes in the BPSD of relatives with dementia (RwD) and in their caregivers’ distress, and sense of social and emotional loneliness, and resilience were also investigated. Materials and methods: Thirty-five caregivers of RwD attending formal healthcare services before the lockdown volunteered for the study, and were interviewed by phone during the lockdown. Caregivers completed the NeuroPsychiatric Inventory (NPI) to assess their care recipients’ BPSD and their own distress, and two questionnaires assessing their social and emotional loneliness, and their resilience. Results: No clear changes emerged in either the BPSD of the RwD or the caregivers’ distress during lockdown compared with before the pandemic. Caregivers reporting more frequent and severe BPSD in their RwD before the lockdown scored higher on emotional loneliness. Those reporting more frequent and severe BPSD under lockdown, especially men and those taking care of RwD with more advanced dementia, scored higher on both social and emotional loneliness. A significant negative correlation also emerged between caregivers’ resilience and changes in their level of distress due to the lockdown, with female caregivers reporting greater resilience. Discussion: Our findings offer preliminary insight on the effects of loneliness and resilience, and on the influence of individual characteristics on the experience and consequences of informal caregiving for RwD in times of restrictions imposed by a pandemic.

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Caring for patients with end‐stage renal disease during COVID‐19 lockdown: What (additional) challenges to family caregivers?

Introduction: Caring for a patient with end‐stage renal disease undergoing in‐centre haemodialysis can be a stressful experience, likely to involve significant burden. Within the context of the new coronavirus pandemic, these patients are highly vulnerable to infection by COVID‐19, which might increase the care demands and burden of family caregivers. Aim: This study aimed to explore the subjective experiences of family caregivers of non‐COVID‐19 patients with end‐stage renal disease undergoing in‐centre haemodialysis during the COVID‐19 lockdown. Study design: A qualitative study was performed with a purposive sample. Methods: Semi‐structured telephone interviews were conducted with 19 family caregivers (50.7 ± 14 years old) of patients undergoing in‐centre haemodialysis in April 2020. Findings Four major themes were identified: (1) emotional distress; (2) changes in caregiving responsibilities; (3) educational and supportive needs; and (4) coping strategies to deal with the outbreak and with the lockdown. Discussion: The findings suggest that family caregivers of patients undergoing in‐centre haemodialysis have to manage several additional care responsibilities due to COVID‐19 lockdown. The dialysis team should consider the development of educational and supportive interventions to meet family caregivers’ needs, mitigate emotional distress, fears and concerns, and prevent caregiver burden during the COVID‐19 pandemic.

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Caregiving during the Time of COVID-19: A Multi-State Qualitative Study of Family Caregiver Experiences and Decision-Making

Research Objective: COVID-19 poses unique challenges to family caregivers. This study explores how family caregivers for older adults with cognitive impairments experience and make decisions about caregiving during a global pandemic. Study Design: Using purposive sampling, family caregivers participated in open-ended qualitive interviews (2019–2020), until thematic saturation was reached. Questions broadly examined caregivers' experiences and decisions, focusing on decisions made around type of care setting. Questions about responses to the Pandemic were added as events unfolded. States were selected to represent variation in Home and Community Based Service (HCBS) expenditures as a percentage of total Medicaid long-term services and support expenditures. They include; Arkansas, Florida, Illinois, Minnesota, New York, North Carolina, and Oregon. All participants were actively involved in the care of someone with dementia or another cognitive impairment over the age of 60. Population Studied 63 family caregivers were interviewed across eight states. About 89% of participants were female, 78% white, 10% black, 5% Asian, 3% biracial, 2% Native American. 36% of respondents reported that those they care for receive Medicaid. Principal Findings: This analysis focused on several COVID-related caregiver decisions: changes in care, challenges with care utilization and access, and policies or changes in care that were helpful during the pandemic were of focus. Four key themes emerged. First, family caregivers experienced communication challenges with long term care facilities often due to COVID-19 restriction policies. They reported an inability to asses care quality, participate in medical appointments, or communicate with their loved ones. Second, some families chose to cease the care supports they were receiving. Participants cited concern about the virus itself, and about indirect pandemic effects such as their loved ones experiencing confusion, loneliness, and poor care. Third, many respondents expressed the desire to avoid future nursing care, and expressed hesitancy towards seeking HCBS until the pandemic is curbed. Finally, many caregivers reported that telemedicine and other remote health care interventions improved their workload and service access. Conclusions: We examined how the pandemic has impacted decision-making among caregivers of older adults with cognitive impairments. Family caregivers experienced significant concern about COVID-19 itself, and about the indirect consequences of caregiving caused by the pandemic. Caregivers have also shown flexibility and adaptability in ceasing selected services, contingently continuing services, and utilizing telemedicine and other remote healthcare interventions to protect their loved ones. Many family caregivers utilized remote health care interventions such telemedicine, no-contact prescription and grocery delivery. Such measures improved service access and reduced caregiver workload. Implications for Policy or Practice Given the persistent challenges posed by COVID-19, long term service organizations have an opportunity to enhance their policies to meet the needs of caregivers and those they care for. First, there is a need to expand and continue telemedicine and other remote healthcare interventions, while adapting these technologies to the needs of families. Second, bolstering communication supports when on lock down in nursing facilities may reduce confusion and feelings of isolation. Finally, procedures are needed for safe and trusted pathways to utilize HCBS and nursing care during a pandemic including sufficient PPE, increased staffing, and utilization of evidence-based protocols. 

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Caregiving burden and depressive symptoms among ultra‐orthodox Jews: The moderating role of sense of community

Background: Individuals who care for aging parents or relatives often experience caregiving burden, which is associated with various negative psychological outcomes. During the current COVID‐19 pandemic, the conflict between caring for older relatives and taking the necessary personal precautions against infection may be exacerbated among individuals who belong to social groups, which perceive caring for others as an indispensable cultural construct. Accordingly, the current study examined whether feeling a part of one's community moderates the association between caregiving burden and depressive symptoms among the ultra‐orthodox society in Israel. Methods: A convenience sample of 358 ultra‐orthodox participants was collected (age range 30–70; M = 49.50, SD = 10.24), all of whom completed scales assessing caregiving burden, sense of community, and depressive symptoms. Results: Results demonstrated that high caregiving burden and low sense of community were associated with increased depressive symptoms. Moreover, sense of community moderated the caregiving burden‐depressive symptoms link, as the latter positive association was significant only among individuals reporting low levels of sense of community. Conclusions: The discussion highlights the importance of sense of community as a beneficial personal and social factor, which mitigates the negative psychological consequences of caregiving burden among such societies.

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Care in times of COVID-19: the impact of the pandemic on informal caregiving in Austria

Background: Much attention has been paid to the effects of the COVID-19 pandemic on long-term care but the impact on informal caregivers has remained speculative. In Austria, like in other European countries, informal care is carried out overwhelmingly by (non-cohabiting) relatives. Limited care services available during the pandemic, social-distancing, increased unemployment and competing care needs within households (e.g. due to school closures) may have changed the prevalence and intensity of informal caregiving. Moreover, these changes may have increased the psychological strain experienced by caregivers. Focusing on Austria, this study aims to empirically analyse the following research questions: how have the prevalence and intensity of informal care changed due to the pandemic? How has the psychological well-being of informal caregivers been affected? Methods: We use a pre- and post-onset of the pandemic research design based on a representative survey carried out in Austria in June 2020 (N = 2000) in combination with comparable 2015 data from the European Social Survey. Results: Findings suggest that neither prevalence nor intensity of informal care changed significantly due to the pandemic. However, the psychological well-being gap between carers and non-carers increased with the start of the pandemic, especially among men. Findings are discussed in relation to the policy measures implemented and possible policy implications for the future. 

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Care difficulties and burden during COVID‐19 pandemic lockdowns among caregivers of people with schizophrenia: A cross‐sectional study

Aims: The purpose of this study was to retrospectively investigate care difficulties experienced by caregivers of people with schizophrenia during COVID‐19 pandemic lockdowns in Japan (April 7‐May 25, 2020) and examine associations between these care difficulties during lockdowns and daily caregiver burden. Methods: Data were collected from 132 participants of the LINE Schizophrenia Family Association using an online survey. Results: Caregivers were mostly concerned about who would care for people with schizophrenia if caregivers become infected with COVID‐19. A significant association was found between higher daily caregiver burden and more difficult care experiences during COVID‐19 pandemic lockdowns (B = 0.58, 95% confidence interval, 0.40‐0.75, P < .01, adjusted R‐squared = .34). Conclusions: Further studies and supports for caregivers of people with schizophrenia are needed.

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Buttered Nostalgia: Feeding My Parents During #COVID19

The author uses poetic inquiry as CFIC (critical family and interpersonal communication) methodology to tell a story of cooking, cleaning, and caring for her elderly parents in the house she grew up in during the COVID-19 pandemic for 11 days in March 2020 when COVID-19 lockdowns began in the US. The piece is organized as a series of daily menus, lyric reflections, and narrative poems about family stories, family values, and the enactment of supportive behaviors that detail how a family deals with political differences, identity negotiation, and crisis. The author asks: (1) What does it mean to be a good daughter, and how is this complicated by discourses about the meaning of marriage?; (2) How does one reconcile family differences in political views and hold true to family and personal values?; and (3) How does one decide what obligations to focus on during a moment of personal and international crisis? The use of poetic inquiry shows how public cultural discourses influence private experience.

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Being the Family Caregiver of a Patient With Dementia During the Coronavirus Disease 2019 Lockdown

Background: Family caregivers of patients with dementia are at high risk of stress and burden and quarantine due to COVID-19 pandemic may have increased the risk of psychological disturbances in this population. The current study was carried out during the national lockdown declared in March 2020 by the Italian government as a containment measure of the first wave of coronavirus pandemic, and is the first nation-wide survey on impact of COVID-19 lockdown on mental health of dementia informal caregivers. Methods: Eighty-seven Dementia Centers evenly distributed on the Italian territory enrolled 4710 caregiver-patient pairs. Caregivers were delivered a telephone interview assessing classical symptoms of caregiver stress and concern for the consequences of COVID-19 infection on patient’s health. We calculated prevalence of symptoms and regressed them on various potential stress risk factors: caregivers' socio-demographic characteristics and lifestyle, patients' clinical features, and lockdown-related elements, like discontinuity in medical care. Results: Approximately 90% of caregivers reported at least one symptom of stress, and nearly 30% reported four or more symptoms. The most prevalent symptoms were Concern for consequences of COVID-19 on patient's health (75%) and Anxiety (46%). The main risk factors for stress were identified as a conflicting relationship with the patient and discontinuity in assistance, but caregiver's female sex, younger age, lower education and cohabitation with the patient also had an impact. Availability of help from institutions or private individuals showed a protective effect against Sense of Abandonment, but a detrimental effect on concern about the risk for the patient to contract COVID-19. The only protective factor was mild dementia severity, which was associated with a lower risk of feeling isolated and abandoned; type of dementia, on the other hand, did not affect stress risk. Conclusion: Our results demonstrate the large prevalence of stress in family caregivers of patients with dementia during COVID-19 pandemic, and has identified both caregivers and situations at higher risk of stress, that should be taken into account in the planning of interventions in support of quarantined families and patients.

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Association between family caregivers and depressive symptoms among community-dwelling older adults in Japan: A cross-sectional study during the COVID-19 pandemic

Objectives: Novel coronavirus disease (COVID-19) pandemic could increase the mental health burden of family caregivers of older adults, but related reports are limited. We examined the association between family caregiving and changes in the depressive symptom status during the pandemic. Methods: This cross-sectional study included 957 (mean age [standard deviation] = 80.8 [4.8] years; 53.5% females) community-dwelling older adults aged ≥ 65 years from a semi-urban area of Japan, who completed a mailed questionnaire. Based on the depressive symptom status assessed with the Two-Question Screen between March and October 2020, participants were classified into four groups: “non-depressive symptoms,” “incidence of depressive symptoms,” “remission from depressive symptoms,” or “persistence of depressive symptoms.” Participants were assessed in October 2020 for the family caregiving status, caregiving role, the severity of care recipients’ needs, and increased caregiver burden during the pandemic, each with the simple question. Multinomial logistic regression analysis was applied to obtain the odds ratios (ORs) and 95% confidence intervals (CIs) for changes in depressive symptom status. Results: Compared to non-caregivers, family caregivers were associated with the incidence (OR [95% CI] = 3.17 [1.55–6.51], p < 0.01) and persistence of depressive symptoms (OR [95% CI] = 2.39 [1.30–4.38], p < 0.01). Primary caregivers, caregivers for individuals with severe care needs, and caregivers with increased burden during the pandemic had a high risk of depressive symptoms. Conclusions: Family caregivers had a high risk of depressive symptoms during the pandemic. Our findings highlight the need for a support system for family caregivers. 

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Assessment of Family Caregivers' Needs: What Employers Need to Know

It remains to be seen whether employers' increased awareness of and support for their employees' caregiving roles during the COVID-19 pandemic will result in permanent changes that better align benefits with employees' needs. Family Caregiver Assessment Assessment of family caregivers' needs and well-being separately from those of the care recipient has long been recommended as an essential component of caregiver support by organizations such as Family Caregiver Alliance and AARP. The better that employers understand what family caregiving entails, based on evidence-based individual caregiver assessment practices, the more likely they can thoughtfully approach an organization-level assessment of their employees' caregiving roles and needs. 

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Are the gender gaps in informal caregiving intensity and burden closing due to the COVID-19 pandemic? Evidence from the Netherlands

Background: This research note presents the findings of changes in the gender gap in informal care provision and caregiver burden during the Spring 2020 COVID-19 lockdown in the Netherlands. Government measures in response to the pandemic strongly restricted informal caregivers in providing help and care to persons with health-related needs. At the same time, formal care was scaled back and informal caregivers' urge to help their loved ones was likely higher than before the pandemic. Generally, women pick up a larger share of informal care and experience more caregiver burden. Method: We assessed whether the COVID-19 pandemic affected the gender gaps in informal caregiving by analyzing unique data on Dutch informal caregivers (N = 1672 caregiving situations in 1196 respondents). Results: showed that women, compared to men, were more likely to have stopped and reduced caregiving, but also to have cared more during the pandemic. Moreover, based on longitudinally comparing levels during and before the lockdown, we found that the gender gap in caregiver burden narrowed down, especially because burden decreased for women. Conclusions: This means that the caregiver burden was more equally distributed among women and men during the Spring 2020 COVID-19 lockdown than before. 

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Advancing Family Presence Policies and Practices in the Canadian Health and Care Context: COVID-19 and Beyond

With the onset of the COVID-19 pandemic, restrictive visitor policies have curtailed the ability of family caregivers to be present to partner in the care of loved ones. Building on the success of the "Better Together" campaign, Healthcare Excellence Canada -- the newly amalgamated organization of the Canadian Foundation for Healthcare Improvement and the Canadian Patient Safety Institute -- has co-developed policy guidance and "Essential Together" programming that recognizes the significant role of essential care partners. This work aims to support the safe reintegration of essential care partners into health and care organizations across Canada during the pandemic and beyond.

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The impact of the Covid 19 Pandemic on people with dementia and their carers (Findings from studies and key messages)

The COVID-19 pandemic and subsequent local, regional, and national lockdowns have led to significant disruption to health and social care services. For people with dementia and their family carers this is problematic. People with dementia rely upon timely and responsive services to live well. The abrupt closure and reduction of many health and community support services arising from the pandemic is of concern. Our two studies explored the impact of COVID-19 on the life quality of people with dementia and their carers. The purpose of this document is to share these findings and provide key messages for services and commissioners. The key messages have been developed in conjunction with people with dementia, their carers and researchers. The Time for Dementia (TfD) study followed a group of 245 family carers during COVID lockdown who provided information on their quality of life and other factors affecting wellbeing before and during the pandemic. In-depth interviews about the impact of the pandemic on their quality of life were also undertaken with 16 carers. The DETERMIND-C19 study compared information collected from 93 people newly diagnosed with dementia and 113 carers before the pandemic to that gathered during the pandemic. Changes in people’s mental, physical and social well-being were explored as well as their use of services over this time period. In-depth interviews with 21 people with dementia and 42 carers were undertaken in order to better understand experiences and quality of life during the pandemic.

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Quality of Life of Informal Caregivers behind the Scene of the COVID-19 Epidemic in Serbia

Background and objectives: The COVID-19 pandemic has had an unprecedented reliance on informal caregivers as one of the pillars of healthcare systems. The aim of this study was to assess the quality of life of informal caregivers during the COVID-19 epidemic in Serbia. Materials and Methods: A cross-sectional study was conducted among informal caregivers during the COVID-19 epidemic in Serbia. Physical and mental quality of life was measured by the 36-Item Short-Form Health Survey. Additional data included sociodemographic characteristics, caregiver and care recipient characteristics, and COVID-19 related concerns. The qualitative component was performed using focus groups and individual in-depth interviews. Results: Out of 112 informal caregivers enrolled, most were female (80%), and the average age was 51.1 +/- 12.3 years. The majority was delivering care to one person, who was a family member, on a daily basis (86.4%, 92%, and 91.1%, respectively). In multiple regression models, significant predictors of caregivers' physical health were delivering care to a family member and a higher level of care complexity, while significant predictors of caregivers' mental health were a higher level of care complexity and increased concerns about self-health and the health of the person being cared for due to the COVID-19 epidemic. Conclusions: Informal caregivers are experiencing negative physical and mental health outcomes during the COVID-19 epidemic in Serbia.

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Care, Dignity and Respect - The Aged Care Royal Commission Final Report

The Final Report of the Royal Commission into Aged Care Quality and Safety was tabled in Parliament on 1 March 2021. In their Report, titled Care, Dignity and Respect, Royal Commissioners Tony Pagone QC and Lynelle Briggs AO call for fundamental reform of the aged care system.  The report is issued in 5 volumes.

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Carer well-being index

Embracing CarersTM created the Carer Well-Being Index to determine the current and residual impacts of COVID-19 on unpaid carers, including its impact on their economic, physical and psychological well-being. While carers weren’t alone in experiencing 2020 as a highly emotional and unstable period, they faced unique pressures, demands and time commitments often overlooked by society. They must now navigate fast-changing care delivery models, learn new telehealth and technology, provide emotional support despite their own emotional needs, and handle increased responsibilities at home—all at once. Amid these rising responsibilities, many carers sacrifice their own health and well-being for the sake of people they love. They deal with emotional isolation. Financial strife hits hard as unemployment spikes and salaries are imperiled. Many lack the time to care for their own physical and emotional health. There are even more nuanced challenges when looking at women carers, younger, middle-aged and older carers, who encounter inequities. In taking a hard look at how the pandemic has affected the globe, carers have faced unprecedented challenges – they are undercounted, unheard and struggling. Now more than ever, governments, public entities, the private sector and all citizens have roles to play in addressing that problem. Carers should not have to face these hardships and inequities alone. They’re sacrificing for us, one by one. As a society, we can help them, together.

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Living with dementia: increased level of caregiver stress in times of COVID-19

COVID-19 pandemic in Argentina has affected the care of older adults with dementia deeply. Our objective was to study how the obligatory social isolation affected stress caregiver and burden of care of family members of subjects living with dementia in the community after the initial 4 weeks of quarantine in our setting. We did a questionnaire survey among 80 family caregivers of persons with Alzheimer's disease (AD) or related dementia collected on April 2020. We designed a visual analog scale to test the level of the burden of care. Characteristics of people with dementia and their caregivers were analyzed with descriptive (mean, standard deviation, frequency and percent) and inferential statistics (chi-square test). The sample included older adults (mean age: 80.51 +/- 7.65) with different stages of dementia. Family was the primary provider of care in 65%. Overall, COVID-19 confinement increased stress caregiver independently of the dementia stage, but those caring for severe cases had more stress compared to milder forms of the disease. Other findings were that half of the subjects with dementia experienced increased anxiety and that most family members discontinued all sort of cognitive and physical therapies. Family members' main concerns were for severe dementia cases, fear of absence of the paid caregiver during the epidemic, and for mild cases fear of spreading the disease while assisting patients with instrumental activities. A partnership between departments of public health, care workers and families must be planned to guarantee continuity of care during these unique COVID-19 times.

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The impact of the COVID-19 pandemic on help-seeking behaviors in individuals suffering from eating disorders and their caregivers

To describe the impact of the COVID-19 pandemic on help-seeking behaviors among individuals with eating disorders and caregivers. We analyzed service utilization data from the National Eating Disorder Information Centre (NEDIC). We compared the number of contacts and symptom frequency between the pandemic period and previous years. NEDIC was contacted 609 times during March 1–April 30, 2020 (72.1% individuals affected by disordered eating, 20.4% caregivers). The number of total contacts significantly increased from 2018 to 2019 and 2018 to 2020 (X2(3) = 50.34, p <.001). Among affected individuals (80.4% women), the number of contacts during the pandemic period was significantly higher (n = 439; X2(2) = 92.74, p <.001) compared to 2018 (n = 197) and 2019 (n = 312). There were higher rates of eating disorder symptoms, anxiety, and depression in 2020 compared to previous years. Thematic analysis of instant chats from the pandemic year revealed four emerging themes: 1) lack of access to treatment, 2) worsening of symptoms, 3) feeling out of control, and 4) need for support. These findings point toward the impact of COVID-19 in individuals affected by disordered eating and hold implications for service delivery during times of crises.

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Caregivers’ Mental Health and Somatic Symptoms During COVID-19

This study examines differences in the mental and physical health of the U.S. population during the early stages of the COVID-19 pandemic among 3 groups: noncaregivers, short-term caregivers (1 year or less), and long-term caregivers (greater than 1 year). Data from the Understanding America Study are used to describe group differences in reports of psychological distress and somatic symptoms. Logistic and negative binomial regression models are used to examine whether these differences persist after adjusting for demographic, socioeconomic, and prepandemic health conditions. To understand within-group differences in caregiving demands, the intensity of care provided by short-term and long-term caregivers, as well as selected patients’ health conditions are summarized. Adults’ mental and physical health varied substantially by caregiver status. Caregivers continued to fare worse than noncaregivers in terms of mental health and fatigue, and long-term caregivers were more likely to report headache, body aches, and abdominal discomfort than both short-term caregivers and noncaregivers, net of controls. The nature of caregiving differed between short-term and long-term caregivers, with the latter more likely to provide greater hours of care, and to be looking after patients with permanent medical conditions.Efforts to understand and mitigate the impact of the pandemic on population health should include caregivers, whose mental and physical health were already vulnerable before COVID-19.

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The Effects of COVID-19 Home Confinement in Dementia Care: Physical and Cognitive Decline, Severe Neuropsychiatric Symptoms and Increased Caregiving Burden

Purpose: This study aims to analyze home confinement impact on individuals with neurocognitive disorders (NCD) through informal caregiver's perspective and examine how it has affected caregiving burden. Methods: Thirty-six caregivers (64.94 +/- 13.54 years, 41.7% female) of individuals with NCD (74.28 +/- 6.76 years, 66.7% female) selected from the Body & Brain exercise program were interviewed over the phone. The following instruments were used: Barthel Index (BI) to assess care recipients' ability to function independently on activities of daily living (ADL), the Neuropsychiatric Inventory (NPI) to evaluate neuropsychiatric symptoms, and the CarerQol-7D/ CarerQol-VAS to determine caregiver subjective burden/well-being. Results: Pre and post-confinement comparisons showed that care recipients significantly declined their independence in ADL (p = 0.003) and increased NPI total score (MD = 5.72; 95% CI: 1.19 to 10.25, p = 0.015). As for caregivers, results also showed an increased caregiving burden (MD = -0.17; 95% CI: -0.27 to -0.08; p = 0.001) and a decline in their well-being (p = 0.015). Discussion: COVID-19 crisis sheds light on how imperative it is to find solutions and design contingency plans for future crisis, in order to ensure properly sustained support to dementia caregiving dyads and mitigate caregivers' burden.

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Digital Technology, Health and Well-Being and the Covid-19 Pandemic: It's Time to Call Forward Informal Carers from the Back of the Queue

Objective: To describe the current challenges of family caregivers during and beyond the COVID-19 pandemic, the need for future digital innovations including involvement from professional nursing roles.; Data Sources: Review of recent literature from PubMed and relevant health and care reports.; Conclusion: The COVID-19 pandemic has caused monumental disruption to health care delivery and care. Caregivers face unprecedented levels of uncertainty: both for the people they care for and for their own health and well-being. Given that many carers face poor health and well-being, there is a significant risk that health inequalities will be increased by this pandemic, particularly for high-risk groups. Innovations including those supported and delivered by digital health could make a significant difference but careful planning and implementation is a necessity for widespread implementation.; Implications for Nursing Practice: Carers need to be championed in the years ahead to ensure they do not become left at the "back of the queue" for health and well-being equity. This situation has been exacerbated by the COVID-19 pandemic. Disruptive change to health and social care is now required where digital health solutions hold considerable promise, yet to be fully realized. 

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COVID-19 IDD: A global survey exploring family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers

Background : This protocol outlines research to explore family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods : An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore their perceptions of the impact of COVID-19 in terms of demographics, living arrangements, access to services, social distancing, and carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 18 countries worldwide for international comparison. The survey team have extensive personal and professional networks and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin's Human Research Ethics Committee (HS-20-28-Linehan). Dissemination : Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies.

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Comfort Always: The Importance of Providing Psychological Support to Neurology Staff, Patients, and Families During COVID-19

Background Although the impact of COVID-19 disruption on healthcare staff is increasingly understood, there has been no discussion of how it affects neurological patients and their families. This study sought to understand the impact of COVID-19 on staff, patients and families. Methods The Department of Neuropsychology at the National Hospital for Neurology and Neurosurgery established three new support services for staff, patients and families. Semi-structured interviews elicited concerns and if these were affected by COVID-19. Staff members were asked to complete the General Health Questionnaire-12. Results Few staff members presented for support, but nearly all indicated significant distress, reflecting increased anxiety and reduced social support. Patients described exacerbated emotional, cognitive and physical concerns, and greater vulnerability to isolation and economic hardship. Families and carers reported increased distress arising from hospital lockdown. Conclusion COVID-19 disruption affects staff, patients and families. Patients and families described additional challenges, which emphasize the importance of providing psychological support during these extraordinary times.

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Who Cares for Carers? Perspectives on Covid-19 Pressures and Lack of Support

Embracing CarersTM created the Carer Well-Being Index to determine the current and residual impacts of COVID-19 on unpaid carers, including its impact on their economic, physical and psychological well-being.

While carers weren’t alone in experiencing 2020 as a highly emotional and unstable period, they faced unique pressures, demands and time commitments often overlooked by society. They must now navigate fast-changing care delivery models, learn new telehealth and technology, provide emotional support despite their own emotional needs, and handle increased responsibilities at home—all at once.

Amid these rising responsibilities, many carers sacrifice their own health and well-being for the sake of people they love. They deal with emotional isolation. Financial strife hits hard as unemployment spikes and salaries are imperiled. Many lack the time to care for their own physical and emotional health. There are even more nuanced challenges when looking at women carers, younger, middle-aged and older carers, who encounter inequities.

In taking a hard look at how the pandemic has affected the globe, carers have faced unprecedented challenges – they are undercounted, unheard and struggling.

Now more than ever, governments, public entities, the private sector and all citizens have roles to play in addressing that problem. Carers should not have to face these hardships and inequities alone. They’re sacrificing for us, one by one. As a society, we can help them, together.

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The importance of family members caregiving for older adults during COVID-19

Presents an argument that one of the ways that we can more properly value family caregivers is by understanding that employment policies have implications for families’ and older adults’ well-being, and that policies targeted at families of all forms can affect the health, employment, and general well-being of the nation.

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Exploring the experiences of siblings of adults with intellectual/developmental disabilities during the COVID-19 pandemic

Background The COVID-19 pandemic has caused many adults with intellectual/developmental disabilities (IDD) to lose their daily routines and social support, and as a result, many adults with IDD are increasingly reliant on their family caregivers. Siblings often play a crucial support role for their brothers and sisters with IDD. As such, this study aimed to describe the experiences of adult siblings of people with IDD during the COVID-19 pandemic. Methods The Sibling Collaborative worked with researchers to codesign an online survey, completed by 91 people, exploring sibling supports and concerns during the COVID-19 pandemic. The survey also aimed to identify helpful resources for siblings during this time. Results The results showed that the majority of siblings are supporting their brother or sister with IDD during the COVID-19 pandemic and are concerned about the health and well-being of their brother/sister. The most common concern related to disruption of their brother's or sister's routine and activities. Although responses of older and younger siblings did not differ from each other, siblings whose brother or sister with IDD lived with family had some unique concerns relative to those whose siblings no longer lived with family. Siblings described how their own self-care and relationships with others, as well as support for their brother/sister, were particularly helpful during the COVID-19 pandemic. Conclusions Siblings are providing key support to their brother or sister with IDD during the COVID-19 pandemic, and they too must be supported. Siblings should be included in efforts to disseminate resources targeting people with IDD and their feedback and input must be obtained. It is also important to include sibling mental wellness as caregiver supports are created and implemented. More research is needed to further understand how to support sibling caregivers.

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ILFA Stakeholder Survey: Caregivers

Between April 16th and May 5th 2020, the Irish Lung Fibrosis Association commissioned a survey of its stakeholders to gain a deeper understanding of how their daily and healthcare needs were being met during the Covid-19 pandemic. Caregivers were quite concerned about poor levels of awareness and lack of recognition of Idiopathic Pulmonary Fibrosis (IPF) as a serious condition. Several were experiencing stress and they found the support from ILFA very helpful. They also felt it would be useful for newly diagnosed patients and their caregivers to be pointed to ILFA immediately upon diagnosis.

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Unseen and undervalued: The value of unpaid care provided to date during the COVID-19 pandemic

Research released for Carers Rights Day 2020 reveals unpaid carers save UK state £530 million every day of the pandemic. Care provided by families valued at £135 billion over course of the pandemic so far.  Carers UK calls on Government to recognise contribution of millions of carers and protect their health and wellbeing.

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Finding the Right Balance: An Evidence-Informed Guidance Document to Support the Re-Opening of Canadian Nursing Homes to Family Caregivers and Visitors during the Coronavirus Disease 2019 Pandemic

During the first few months of the coronavirus disease 2019 (COVID-19) pandemic, Canadian nursing homes implemented strict no-visitor policies to reduce the risk of introducing COVID-19 in these settings. There are now growing concerns that the risks associated with restricted access to family caregivers and visitors have started to outweigh the potential benefits associated with preventing COVID-19 infections. Many residents have sustained severe and potentially irreversible physical, functional, cognitive, and mental health declines. As Canada emerges from its first wave of the pandemic, nursing homes across the country have cautiously started to reopen these settings, yet there is broad criticism that emerging visitor policies are overly restrictive, inequitable, and potentially harmful. We reviewed the nursing home visitor policies for Canada's 10 provinces and 3 territories as well as international policies and reports on the topic to develop 10 provi-informed, data-driven, and expert-reviewed guidance for the re-opening of Canadian nursing homes to family caregivers and visitors. 

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Essential Family Caregivers in Long-Term Care During the COVID-19 Pandemic

Four decades ago, my parents were not permitted to hold their dying infant because they were “visitors” to the intensive care unit. I learned from them that our health care policies sometimes carry huge human costs. As a geriatrician and medical director of a long-term care (LTC) facility, I have learned that family members are not merely visitors; family members are critical partners in our care. The practice of social distancing and physical separation is important to keep our residents in LTC facilities safe in the COVID-19 pandemic, but the time has come to revise our policies allowing family presence at the bedside of loved ones....

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The Family Caregiving Crisis Meets an Actual Pandemic

The coronavirus disease 2019 (COVID-19) pandemic presents unique challenges to those who work with the seriously ill population, including both health care providers and the family caregivers providing unpaid care. We rely on this lay workforce as health care routinely transitions care to the home, and now more than ever, we are depending on them in the current pandemic. As palliative care and other health care providers become overwhelmed with patients critically ill with COVID-19, and routine care becomes delayed, we have a charge to recognize and work with family caregivers. Our commentary provides rationale for the need to focus on family caregivers and key considerations for how to include them in pandemic clinical decision making. 

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COVID-19 Education for Caregivers

The COVID-19 pandemic has impacted everyday life in the United States and around the world. Considering persons with mild symptoms may recover at home, education for caregivers is critical. They need instruction on how to care for a family member with COVID-19 and how to prevent themselves from getting the virus.

The article discusses the need for caregivers to receive instruction on how to care for a family member with COVID-19 and how to prevent themselves from getting the virus. Topics mentioned include the use of over-the-counter medication for relief of fevers, responsibility of caregivers to practice a certain amount of distancing from a person with COVID-19, and disinfection of electronics with appropriate device-approved solutions.

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Meeting the Transitional Care Needs of Older Adults with COVID-19

Older adults with COVID-19 who survive hospitalizations and return to their homes confront substantial health challenges and an unpredictable future. While understanding of the unique needs of COVID-19 survivors is developing, components of the evidence-based Transitional Care Model provide a framework for taking a more immediate, holistic response to caring for these individuals as they moved back into the community. These components include: increasing screening, building trusting relationships, improving patient engagement, promoting collaboration across care teams, undertaking symptom management, increasing family caregiver care/education, coordinating health and social services, and improving care continuity. Evidence generated from rigorous testing of these components reveal the need for federal and state policy solutions to support the following: employment/redeployment of nurses, social workers, and community health workers; training and reimbursement of family caregivers; widespread access to research-based transitional care tools; and coordinated local efforts to address structural barriers to effective transitions. Immediate action on these policy options is necessary to more effectively address the complex issues facing these older adults and their family caregivers who are counting on our care system for essential support.

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Introducing the Video call to facilitate the communication between health care providers and families of patients in the intensive care unit during COVID-19 pandemia

Effective communication improves family satisfaction, trust in ICU physicians, clinical decision-making and psychological well-being being of family members (Lilly et al., 2000; Wood, 2018). Complete isolation due to the COVID-19 pandemic restrictions disables clinician-family meetings and the limitations of hospital visitation policies do not permit caregivers to be near their loved ones, with the risk of leaving them without any form of trusted representation and advocacy. Always be open minded to new ways of acting your mission.

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A Hitchhiker's Guide to caring for an older person before and during coronavirus‐19

Coronavirus‐19 (COVID‐19) has reconfigured working lives with astonishing velocity. Older people have suffered the worst effects of the pandemic, with governments marginalizing or overlooking their needs. Women perform the majority of care for older people, often compromising their working lives and health. Yet in academic articles their voices are often filtered or aggregated in quantitative studies. Based on a weave of personal experiences and secondary research, the article traces a path through UK forms of care and shows how the inadequate response to COVID‐19 stemmed from existing policies embedded in health and social care. COVID‐19 has severed important informal care work, rendering the vulnerable yet more exposed and carers anxious and bereft. Longitudinal research capturing the trajectory of care from the perspective of older people and their carers would lead to improved support hence gender equality. 

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A Systematic Review of Home-Setting Psychoeducation Interventions for Behavioral Changes in Dementia: Some Lessons for the COVID-19 Pandemic and Post-Pandemic Assistance

Background Impacts of social isolation measures imposed by COVID-19 Pandemic on mental health and quality of life of older adults living with dementia and their caregivers remain unexplored. Studies have shown that psychoeducational and psychosocial interventions can manage behavioral and psychological symptoms in dementia (BPSD) and reduce the emotional burden on family members when applied in home-setting scenarios. Method a comprehensive systematic review of useful interventions for easing the BPSD burden in patients with dementia (PwD) and their caregivers in the context of COVID-19 quarantine was performed from January 2010 to March 2020. Results From a total of 187 articles retrieved from electronic databases (MEDLINE, LILACS, Cochrane and SCOPUS), 43 studies were eligible for this review. Most of the psychosocial and psychoeducational interventions described were person-centered strategies based on the cognitive-behavioral approach or informational tools to enhance care providers' knowledge of dementia. Most studies achieved successful results in handling BPSD and mood-anxiety symptoms of care providers, contributing to an overall improvement in dyad life quality. Conclusion Evidence from the last few years suggest that low-cost techniques, tailored to the dyad well-being, with increasing use of technology through friendly online platforms and application robots, can be an alternative to conventional assistance during COVID-19 Pandemic. Nevertheless, the world's current experience regarding the duration of the COVID-19 Pandemic and its effects on the cognition, behavior, and life quality of PwD will demand research on preventive and protective factors of dementia and the pursue of efficient interventions in different scenarios.

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Experiences and Needs of Caregivers of Persons With Dementia in India During the COVID-19 Pandemic-A Qualitative Study

Objective: To describe the experiences and needs of caregivers of persons with dementia during the COVID-19 pandemic and lockdown in a city in India. Design: Qualitative study using a telephonic semistructured interview. Setting: A specialist geriatric outpatient mental health service based in a nongovernmental organization in Chennai, India. Participants: A purposive sampling of family members of persons with dementia registered in the database and seen within the previous 6 months. Results: Thirty-one caregivers participated. Thematic analysis of the data showed two sets of issues that the caregivers of persons with dementia faced in their experiences during the pandemic. The first set was unique to the caregivers that directly related to their caregiving role, while the second set did not relate directly to their caregiving role. These two sets also appeared to have a two-way interaction influencing each other. These issues generated needs, some of which required immediate support while others required longer-term support. The caregivers suggested several methods, such as use of video-consultations, telephone-based support and clinic-based in-person visits to meet their needs. They also wanted more services postpandemic. Conclusion: Caregivers of persons with dementia had multiple needs during the pandemic. Supporting them during these times require a pragmatic multilayered approach. Systemic changes, policies and frameworks, increased awareness, use of technology, and better access to health are necessary.

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Guidance for those who provide unpaid care to friends or family

Guidance for anyone who cares, unpaid, for a friend or family member who cannot cope without their support. This may be because they have a lifelong condition, illness, disability, serious injury, mental health condition or an addiction. 

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Guidance for those under 25 who provide care for someone

This guidance is for anyone under 25 who cares for a family member who cannot cope without their support. This may be because they have a lifelong condition, illness, disability, serious injury, a mental health condition or an addiction. 

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Coronavirus (COVID-19): providing unpaid care to adults with learning disabilities and autistic adults

This guidance is for anyone who provides unpaid care, such as friends or family, to adults with learning disabilities and autistic adults. The guidance will help people with caring responsibilities to: keep people with learning disabilities and autistic people safe support them to understand the changes they need to make during the COVID-19 outbreak protect their own wellbeing. This guidance aims to help those with caring responsibilities keep people with learning disabilities and autistic people safe, to support them to understand the changes they need to make during the COVID-19 outbreak, and to protect their own wellbeing.

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Caring for loved ones with cancer during the COVID-19 pandemic: A double hit risk for social isolation and need for action

Key Points

  • With social distancing and visitors limited in healthcare, caregivers of cancer patients are at increased risk for isolation.
  • Caregivers may have learned particular lessons that can foster resilience from isolation.
  • Telehealth and phone check‐ins offer opportunities to support caregivers.
  • Policy initiatives have the potential to continue support for caregivers post‐COVID.
  • Supporting caregivers is a community effort, and its importance should not be forgotten post‐COVID.
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Care packages halved for most people with learning disabilities during Covid, report carers

Needs have increased leading to negative impact on independence, relationships and health and more pressure on carers, finds Mencap

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Amid the COVID-19 Pandemic, Meaningful Communication between Family Caregivers and Residents of Long-Term Care Facilities is Imperative

Older adults residing in long-term care facilities are especially vulnerable for severe illness or death from COVID-19. To contain the transmission of the virus in long-term care facilities, federal health officials have issued strict visitation guidelines, restricting most visits between residents and all visitors, including family members. Yet, many older adults rely on family care for social support and to maintain their health, well-being, and safety in long-term care facilities, and therefore need to stay connected to their families. The federal government, state and local leaders, and long-term care facilities should take further actions to enable the relationship between residents of long-term care facilities and families during the COVID-19 pandemic. 

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The alleviation of suffering during the COVID-19 pandemic

During the current global public health emergency, clinicians may likely struggle to meet the psychological, spiritual, social, and emotional needs of patients and family caregivers. [...]the burnout and existential distress experienced by healthcare professionals worldwide prior to COVID-19 will likely increase significantly amid the current pandemic (National Academies of Sciences, Engineering, and Medicine, 2019; Parks, 2020; Pessin et al., 2015). Responding to suffering during COVID COVID-19 is magnifying a collective fear and anxiety about impending destruction, as mortality rates rise steadily and we learn more about healthcare system capacity constraints, the possibilities of resource rationing and blanket do-not-resuscitate orders, and low survival rates linked to advanced stages of COVID-19. The clinical progression of COVID-19 for many patients has escalated so quickly there has been little time for patients or family caregivers to discuss the reality of the disease, adjust to the caregiving role, clarify goals of care, or create a legacy as life ends. Given the unique, high-risk vulnerabilities of seriously ill patients and those at the end of life who are COVID-19 positive, many palliative care organizations are guiding clinicians to employ presence, use deep listening skills, and promote cultures of professionalism and calm in interactions with patients, families, and colleagues (CAPC, www.capc.org; End-of-Life Nursing Educational Consortium, ELNEC, www.aacnnursing.org/ELNEC; National Hospice and Palliative Care Organization, NHPCO, www.nhpc.org; VitalTalk.org, www.vitaltalk.org).

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2020 Vision: Hear Me, See Me, Support Me and don’t Forget Me.

The results of a Carers Trust Scotland survey into the impact of Coronavirus on young carers aged 12 to 17 and young adult carers aged 18 to 25 was published in July 2020. They point to a steep decline in the mental health and wellbeing of thousands of young people across Scotland who provide unpaid care at home for family members or friends.

Key points: With 214 responses from across Scotland, our survey provides a base of evidence. It shows how worries relating to Coronavirus and increased isolation caused by the lockdown have affected the mental health and wellbeing of Scotland's young people with caring responsibilities. Even before the outbreak of Coronavirus, young carers and young adult carers were all too often spending significant amounts of time caring for a relative in addition to the time they needed to spend on education, work and time for themselves. Coronavirus has significantly increased those pressures.

  • 45% of young carers and 68% of young adult carers in Scotland say their mental health is worse since Coronavirus.
  • 71% of young carers and 85% of young adult carers in Scotland are more worried about the future since Coronavirus.
  • 69% of young carers and 76% of young adult carers in Scotland are feeling more stressed since Coronavirus.
  • 74% of young carers and 73% of young adult carers in Scotland are feeling less connected to others since Coronavirus.
  • 58% of young carers in Scotland are feeling that their education has suffered since Coronavirus.
  • 11% of both young and young adult carers in Scotland report an increase of 30 hours or more in the amount of time they spend caring per week.
  • 6% of young carers and 11% of young adult carers in Scotland are spending over 90 hours a week caring for a family member or friend.
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Caring behind closed doors: six months on. The continued impact of the coronavirus (COVID-19) pandemic on unpaid carers

There were up to 9.1 million unpaid carers across the UK before the COVID-19 pandemic, providing everything from a few hours of support a week to intensive and complex round the clock care.  The pandemic has resulted in millions of new carers – 4.5 million new to caring since the start of the pandemic, 2.8 million of whom are juggling work and care. Caring can have significant costs, and without sufficient support it can take its toll on carers’ emotional and physical health, ability to work and have a knock-on effect on their long-term finances. Carers have been hit particularly hard as a result of the COVID-19 pandemic. As this research shows many have had to make extremely difficult decisions about work and family.

Carers are providing even more care than six months ago; Needs have increased; Fewer breaks and no breaks; Worse health and wellbeing; Worried about winter; Exhausted and worn out; Struggling financially; Work – a mixed picture; Digital differences; Some positives during caring 

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Decision-making for receiving paid home care for dementia in the time of COVID-19: a qualitative study

Background: The lockdown imposed in the UK on the 23rd of March and associated public health measures of social distancing are likely to have had a great impact on care provision. The aim of this study was to explore the decision-making processes of continued paid home care support for dementia in the time of COVID-19. Methods: Unpaid carers caring for a person living with dementia (PLWD) who were accessing paid home care before COVID-19 and residing in the UK were eligible to take part. Participants were interviewed over the phone and asked about their experiences of using paid home care services before and since COVID-19, and their decision-making processes of accessing paid home care since the outbreak and public health restrictions. Results: Fifteen unpaid carers, who were also accessing paid care support for the PLWD before COVID-19, were included in the analysis. Thematic analysis identified three overarching themes: (1) Risk; (2) Making difficult choices and risk management; and (3) Implications for unpaid carers. Many unpaid carers decided to discontinue paid carers entering the home due to the risk of infection, resulting in unpaid carers having to pick up the care hours to support the person living with dementia. Conclusions: This is the first study to report on the impact of COVID-19 on paid home care changes in dementia. Findings raise implications for providing better Personal Protective Equipment for paid carers, and to support unpaid carers better in their roles, with the pandemic likely to stay in place for the foreseeable future.

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Worst hit: dementia during coronavirus

The coronavirus pandemic is having a devastating impact around the world. In the UK, people affected by dementia have been hardest hit and our fragmented social care system has been exposed for all to see.

Alzheimer’s Society is the UK’s leading dementia charity, and in this report we bring together evidence from a wide range of sources to shine a light on the impact of coronavirus disease 2019 (COVID-19) on people who have dementia and those who care for them

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Risk of Depression in Family Caregivers: Unintended Consequence of COVID-19

Background: Coronavirus disease 2019 (COVID-19) is likely to exacerbate the symptoms of poor mental health in family caregivers; Aims: To investigate whether rates of depressive symptomatology increased in caregivers during COVID-19 and whether the unintended consequences of health protective measures, i.e., social isolation, exacerbated this risk. Another aim was to see if caregivers accessed any online/phone psychological support during COVID. Method: Data (1349 caregivers; 6178 non-caregivers) was extracted from Understanding Society, a UK population-level data-set. The General Health Questionnaire cut-off scores identified those who are likely to have depression.; Results: After adjustment for confounding caregivers had a higher risk of having depressive symptoms compared with non-caregivers, odds ratio (OR) = 1.22 (95% CI 1.05–1.40, P = 0.008) evidenced by higher levels of depression pre-COVID-19 (16.7% caregivers v. 12.1% non-caregivers) and during the COVID-19 pandemic (21.6% caregivers v. 17.9% non-caregivers), respectively. Further, higher levels of loneliness increased the risk of depression symptoms almost four-fold in caregivers, OR = 3.85 (95% 95% CI 3.08–4.85, P < 0.001), whereas accessing therapy attenuated the risk of depression (43%). A total of 60% of caregivers with depression symptoms reported not accessing any therapeutic support (for example online or face to face) during the COVID-19 pandemic.; Conclusions: COVID-19 has had a negative impact on family caregivers’ mental health with loneliness a significant contributor to depressive symptomatology. However, despite these detriments in mental health, the majority of caregivers do not access any online or phone psychiatric support. Finally, psychiatric services and healthcare professionals should aim to focus on reducing feelings of loneliness to support at-risk caregivers.

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Impact of COVID-19 related social support service closures on people with dementia and unpaid carers: a qualitative study

Objectives Accessing social care and social support services is key to support the well-being of people living with dementia (PLWD) and unpaid carers. COVID-19 has caused sudden closures or radical modifications of these services, and is resulting in prolonged self-isolation. The aim of this study was to explore the effects of COVID-19 related social care and support service changes and closures on the lives of PLWD and unpaid carers. Method PLWD and unpaid carers were interviewed via telephone in April 2020. Transcripts were analysed using thematic analysis. Demographic characteristics including household Index of Multiple Deprivation score and weekly hours of social support service usage before and since the COVID-19 outbreak were also collected. Paired samples t-tests was used to compare the mean of weekly hours of social support service usage before and since the outbreak. Results 50 semi-structured interviews were conducted with unpaid carers (n?=?42) and PLWD (n?=?8). There was a significant reduction in social support service usage since the outbreak. Thematic analysis identified three overarching themes: (1) Loss of control; (2) Uncertainty; (3) Adapting and having to adapt to the new normal. Carers and PLWD were greatly affected by the sudden removal of social support services, and concerned about when services would re-open. Carers were worried about whether the person they cared for would still be able to re-join social support services. Conclusions PLWD and carers need to receive specific practical and psychological support during the pandemic to support their well-being, which is severely affected by public health restrictions.

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Covid-19 and the Impact on Family Carers

This paper will examine key rapid surveys and research studies which have been conducted by various researchers and organisations both in a specifically Irish context and internationally.

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The invisible workforce during the COVID-19 pandemic: Family carers at the frontline [version 1; peer review: 2 approved]

This is an open letter to acknowledge the essential and increasingly challenging role unpaid family carers are playing in the COVID-19 pandemic. The letter is written by members of the CAREWELL team, a HRB-funded project that aims to promote health and self-care behaviours among working family carers. Family carers provide care to family and friends in the community who need support due to old-age, disability and chronic illness. In many cases, family carers are supporting those who are considered most at risk in this pandemic meaning carers must reduce their own risk of infection in order to protect their dependent family members. The temporary reduction of some home care services, as well as school and creche closures, means that family carers are providing increased levels of care with little or no support. At a time when both worlds of work and care have been dramatically transformed, we wish to shed light on those who are currently balancing paid employment with a family caregiving role. We argue that there is much to be learned from the recent work restrictions that could benefit employees, including working family carers, beyond this pandemic. We also wish to build on the potential positives of a transformed society and encourage policy makers and employers to focus on what is currently being implemented, and to identify which measures could be used to create a bedrock of policies and practices that would offer robust and effective support to family carers. It is hoped that family carers will receive greater recognition for the significant role they play in society, providing essential care and alleviating the strain on health and social care systems, both during and post the COVID-19 pandemic.

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Caring and Coping with Dementia during COVID-19

Research Aim: This aim of this research is to explore how the experiences and needs of people with dementia and carers have changed throughout the COVID-19 pandemic and to understand how these needs can be appropriately addressed. Summary: This report presents the findings of national research undertaken by The Alzheimer Society of Ireland (ASI) between 8th and 26th June 2020, which explored how people with dementia and their carers are coping during COVID-19 and to understand their challenges and needs. This report follows on from a national survey carried out at the start of April 2020, when dementia services ceased operating and COVID-19 restrictions were imposed.

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COVID-19 and the impact of the Closure of day services on People with intellectual disabilities

In mid-March Disability day services closed to people with intellectual disabilities with a small number of exceptions. In May and early June, Inclusion Ireland surveyed the people who use these services and their families on the impact the closure of service has had on them and the supports they have received in this time. In total, 291 family members answered our survey and 55 people with intellectual disabilities responded to an easy-to-read version of our survey giving a total response of 346. Peoples engagement with their service over the Covid period has been variable with some people reporting regular contact, daily online activities, and some face to face support while more than half of respondents have had very little meaningful  contact at all. The closure of day services impacting on the mental health of people cannot be underestimated. A significant number of respondents reported increased loneliness, increased anxiety, and increased challenging behaviour or anger. At the same time more that 20% of people reported being happier during the lock down. As services reopen and start to support people with intellectual disabilities in a ‘different or remote’ manner the needs of people with high support needs and complex disabilities must be considered carefully. This group of people tell us they cannot access virtual technology even with one on one family support to do so.

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COVID-19 and Intellectual Disability: Supporting people with intellectual disabilities and their families

In March 2020 the World Health Organisation (WHO) declared the outbreak of the new Coronavirus, or COVID19, as a pandemic, due to its rapid spread around the globe. Ireland, along with other countries around the world, is taking action and putting in place plans to curtail the COVID-19 virus. However, people with intellectual disabilities are a group at a significantly higher risk than others. As a result, it is important that additional considerations and supports are put in place for people with disabilities during this COVID-19 outbreak, and that actions specific to this group in society are taken by Government, disability services, communities and people with disabilities themselves and their families. These actions must be in line with the UNCRPD, and must support people with intellectual disabilities and their families through this emergency period, in line with Article 11 of the Convention which states that all necessary measures to ensure the protection and safety of persons with disabilities in situations of risk are taken.

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Covid-19: Impact & Need for People with Dementia and Family Carers

This report produced by The ASI summarises the results of three surveys that were distributed to people living with dementia, family carers, and Community Champions (Understand Together). The aims of this report are threefold:

1. To identify the current challenges experienced by people with dementia and family carers in the current Covid-19 Pandemic through simple surveys.

2. To bring together suggestions from people with dementia and family carers of how ASI can continue to support them in lieu of suspended services.

3. To communicate the above work in an accessible way to the committee in such a way that will enable the committee to review and shortlist the evidence in a timeline manner.

Results are presented for each individual cohort: People living with dementia, Family Carers, and Community Champions. 

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Participant and Caregiver Perspectives on Clinical Research During Covid‐19 Pandemic

BACKGROUND/OBJECTIVES The COVID‐19 pandemic has massively disrupted essential clinical research. Many regulatory organizations have rightfully advocated to temporarily halt enrollment and curtail all face‐to‐face interactions. Views and opinions of patients and their caregivers are seldom considered while making such decisions. The objective was to study older participantsʼ and their caregiversʼ perspectives to participate in ongoing clinical research during the COVID‐19 pandemic. DESIGN Cross‐sectional. SETTING VISN‐16/Geriatric Research, Education and Clinical Center (GRECC), Department of Veterans Affairs. PARTICIPANTS Older participants and their caregivers (N = 51) enrolled in ongoing clinical research studies. MEASUREMENTS Questions about perceptions of safety to attend research visit, the level of panic among the general public, and medical centerʼs preparedness in handling the pandemic. Other questions identified the source of pandemic information and the preference of a phone or in‐person visit. RESULTS Mean age was 69.3 (±9.4) years, 53% were male, 39% were caregivers, and 65% were Caucasian. Majority (78%) of the participants felt safe/very safe attending the scheduled research appointment; 63% felt that the extra screening made them feel safe/very safe; 82% felt that the medical center was prepared/very prepared for the pandemic. Participants split evenly on their preference for phone versus in‐person visits. Family members and television news media were the commonly used sources of pandemic information irrespective of their education. Perceptions were influenced by gender and source of information, not by age or education. Females perceived higher level of panic compared to males (P = .02). Those relying on news media felt safer compared to those that relied on family members (P = .008). CONCLUSION Even though informants felt that the medical center was prepared to handle the pandemic, only half the participants preferred the in‐person visit. Pandemic information was obtained from family members or the television news media. Knowing patientsʼ perspectives may help researchers be better prepared for future pandemics.

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Elder abuse in the COVID‐19 era

Reports of elder abuse range from financial scams to incidents of family violence, with public warnings issued accordingly from the Federal Trade Commission and the American Bar Association. The Centers for Disease Control and Prevention defines elder abuse as an intentional act or failure to act by a caregiver or another person in a relationship involving an expectation of trust that causes or creates a risk of harm to an older adult. Abuse of older adults can be physical, emotional, financial, neglect, or any combination of these. The World Health Organization defines ageism as “the stereotyping, prejudice, and discrimination against people on the basis of their age,” and a recent systematic review found ageism to be associated with numerous negative health consequences worldwide. Ageism is pervasive, harmful, and arguably the primary vice underlying elder abuse. See PDF.] ACKNOWLEDGMENTS Financial Disclosure This work was supported by the National Institute on Aging at the National Institutes of Health grants (R01AG055430 to S.D.H., R01AG060096 to L.M.) and the Administration for Community Living grant (90ABRC0001‐02‐00 to L.M.), as well as the Department of Family Medicine of the University of Southern California.

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Protecting the elderly through and beyond the Covid-19 lockdown

Extract: ...Add to this the knowledge that assaults and domestic murders surge by as much as 25% during a festive season - a time of increased financial strain and closer proximity of family members - and the present Covid-19 pandemic lockdown, the current environment for older people looks deeply concerning. Caregiver support interventions Stemming from the theoretical risk model of 'caregiver stress theory', caregiver support interventions seek to alleviate the stress and burden of caring for an older person by providing key services (including meal preparation, housekeeping help or day care, or broader caregiving help through educational, teaching coping strategies or support groups). There is help and support available for informal carers from Citizens Advice, and from local councils on a range of issues from making daily life easier to benefit claims * Have a conversation about practical arrangements for the future, e.g. 'Have you thought about future decision-making for health and financial matters?'; 'Do you feel confident managing your money?' Empowering older people to seek out knowledge to help plan their future can safeguard from abuse.

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Young carers research project: Summary of findings

A number of recent studies have highlighted the challenges facing young people as a result of the COVID-19 pandemic. Like their peers, young people aged 16 to 25 who are caring for a family member or friend have experienced significant change and instability during this unprecedented period.

During the peak of the COVID-19 lockdown, Carers NSW conducted online interviews and focus groups with 28 young carers to better understand their experiences and support needs and to learn how to engage with them more effectively. This summary report includes powerful stories of young people caring for loved ones while juggling study, work, family and social responsibilities.

This report shares insights from young carers across a range of themes, including education, employment, service provision and relationships, embedding the young carer voice throughout. These insights will help to inform ongoing and future service provision, research and systemic advocacy conducted by Carers NSW and our partners and stakeholders.

A review of existing research literature (see Appendix I) and internal consultation with Carers NSW staff working with young carers, conducted in the scoping phase of this project, identified that young carers are often isolated and experience socio-economic disadvantage as a result of their caring responsibilities. However, they are often reluctant to disclose their caring responsibilities to others and commonly perceive their own needs and experiences as less important than those of the person they care for. These factors can make it more difficult for researchers and others to successfully engage with young carers.

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Allowing Visitors Back in the Nursing Home During the COVID-19 Crisis: A Dutch National Study Into First Experiences and Impact on Well-Being

Objectives: To prevent and control COVID-19 infections, nursing homes across the world have taken very restrictive measures, including a ban for visitors. These restrictive measures have an enormous impact on residents' well-being and pose dilemmas for staff, although primary data are lacking. A Dutch guideline was developed to cautiously open nursing homes for visitors during the COVID-19 pandemic. This study reports the first findings on how the guideline was applied in the local context; the compliance to local protocols; and the impact on well-being of residents, their family caregivers, and staff. Design: A mixed-methods cross-sectional study was conducted. Setting and Participants: In total, 26 nursing homes were permitted to enlarge their possibilities for allowing visitors in their facility. These nursing homes were proportionally representative of the Netherlands as they were selected by their local Area Health Authority for participation. At each nursing home, a contact person was selected for participation in the current study. Methods: A mixed-methods cross-sectional study was conducted, consisting of questionnaire, telephone interviews, analyses of documentation (ie, local visiting protocols), and a WhatsApp group. Results: Variation in local protocols was observed, for example, related to the use of personal protective equipment, location, and supervision of visits. In general, experiences were very positive. All nursing homes recognized the added value of real and personal contact between residents and their loved ones and indicated a positive impact on well-being. Compliance with local guidelines was sufficient to good. No new COVID-19 infections were reported during this time. Conclusions and Implications: These results indicate the value of family visitation in nursing homes and positive impact of visits. Based on these results, the Dutch government has decided to allow all nursing homes in the Netherlands to cautiously open their homes using the guidelines. More research is needed on impact and long-term compliance.

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Care in the Time of Coronavirus: Why care work needs to be at the centre of a post-COVID-19 feminist future

New research by Oxfam and partners reveals that while COVID-19 and the related containment efforts have caused increases in women’s – and men’s – unpaid care workloads, women are still doing the bulk of this work. Women living in poverty, single mothers and essential workers as well as those belonging to minority racial and ethnic groups are being pushed furthest to the margins. It shows the real consequences this has for the health, economic security and wellbeing of these women and their families. Women report feeling more anxious, depressed, overworked or ill because of their increased unpaid care work.  Care work is essential to the healthy functioning of our societies and economies and must be better supported through policy and social norms change.  Care work must be at the heart of a feminist COVID-19 recovery.

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Care, poverty and coronavirus across Britain

Carers, paid and unpaid, are at the forefront of our response to the Coronavirus, putting themselves at risk to protect us all. Yet, if you are a carer, for adults or children, you are more likely to be living in poverty. This is not right.

This briefing note updates our Make Care Count report which focuses on the link between care and poverty before the crisis. It describes carers’ experiences of the pandemic, prioritising the voices of carers throughout, before detailing how we can take the first steps towards ending poverty for carers in Britain.

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Supporting informal carers during the covid-19 pandemic

A working list of things to be aware of/ consider in supporting informal carers (family and friends who support patients in an unpaid role) impacted by COVID-19. This is partly evidence-based and partly grounded in our combined experience of working in applied research on informal carer support needs

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Impact of COVID-19 pandemic restrictions on community-dwelling caregivers and persons with dementia

Restrictions related to the 2019 novel coronavirus (COVID-19) pose unique and significant challenges for community-dwelling caregivers and people with dementia, including disrupted routines, a lack of structure, decreased access to respite care, and new or worsening safety issues related to interpersonal violence and hygiene. In addition to identifying issues confronting caregivers, the authors also describe possible ways to address some of these pressing concerns.

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Caring safely at home

This video-based resource is designed to help people look after someone safely at home.

This resource will help you care for people in any situation, although this resource may be particularly useful if you are supporting someone during the COVID-19 crisis.

Each section has a set of videos designed to give you and the person you care for practical and relevant information to support you day to day.

What will the videos cover?

  • how to help manage certain conditions
  • providing everyday support for any person you’re caring for.

There is no set order you need to go through these topics, and some may not apply to your specific situation. Learn at your own pace and choose whichever is relevant to you.

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The COVID-19 Pandemic: Challenges and opportunities for carers in NSW

Carers NSW has been closely monitoring COVID-19 developments in NSW, the ongoing government response and the wide ranging impacts the virus and associated social distancing requirements have had on carers. Carers have experienced a variety of impacts, both in relation to the people they care for and in relation to their own health and overall wellbeing. Many carers provide care and support to people who are in higher risk categories, and many are in higher risk categories themselves due to age or an existing health condition. These factors have resulted in complexities surrounding provision of care, particularly in maintaining social distancing.  [...]

Carers NSW determined that it was crucial to hear directly from carers and other key stakeholders in order to gain a clear and accurate picture of the key issues, challenges and opportunities for carers during the pandemic. This report identifies the key findings of consultation conducted to inform Carers NSW service adjustments and systemic advocacy. 

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Coronavirus (COVID-19) and carers: Carers NSW Position statement, 7 May 2020

As the peak non-government organisation for carers in NSW, Carers NSW has been closely monitoring related policy developments that may directly impact carers and the people they care for, and has been in continual contact with carers across the state to understand and respond to their changing support needs. This position statement draws on ongoing policy and media analysis, more than 50 carer case studies, and 5 consultations held with 30 carers and other stakeholders.

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Caring behind closed doors: Forgotten families in the coronavirus outbreak

Carers UK carried out an online survey between 3rd April and 14th April 2020. A total of 5,047 carers and former carers responded to the survey. This included 4,830 current carers and 217 former carers. Compared to the carer population as a whole, respondents to this survey were more likely to be female and caring for a high number of hours every week. As not all respondents completed every question in the survey, a number of the figures given in this report, including those presented here, are based upon responses from fewer than 5,047 carers.

Of current carers responding to the survey:

  • 67% live in England, 19% live in Scotland, 9% live in Northern Ireland, and 6% live in Wales.
  • 81% identify as female and 18% identify as male.
  • 23% consider themselves to have a disability.
  • 1% are aged 0–24, 4% are aged 25–34, 13% are aged 35–44, 27% are aged 45–54, 32% are aged 55– 64, 17% are aged 65–74, and 5% are aged 75 and over.
  • 4% identified as lesbian, gay or bisexual.
  • 4% described their ethnicity as black or minority ethnic.
  • 18% also have childcare responsibilities for a nondisabled child under 18.
  • 36% have been caring for 15 years or more, 17% for between 10–14 years, 24% for 5–9 years, 20% for 1–4 years, 2% for less than one year and just 1% have been caring since the beginning of the coronavirus outbreak. 
  • Most (71%) care for one person, 20% care for two people, 6% for three people, and 2% care for four or more people. 
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Caring Through COVID: Life in Lockdown

This report sets out the findings of a national survey undertaken by Family Carers Ireland between April 14th and May 5th 2020 which examined family carers’ experience of caring during the COVID-19 pandemic. The online survey was completed by 1,307 current family carers representing a range of caring situations – parents caring for children with a disability, those caring for an adult, carers of older people and those caring for multiple people. The survey was open to respondents 18 years and older. As not all respondents completed every question in the survey, a number of the figures given in this report, including those presented here, are based upon responses from fewer than 1,307 carers. A family carer is someone who is providing an ongoing significant level of care to a person who is in need of that care in the home due to illness, disability or frailty.

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Carers need respite from care. COVID-19’s limiting the options & pushing many to breaking point

One in ten Australians provide care for a loved one, sustaining families and saving governments huge sums on care services. But what do they do now?

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Covid-19 pandemic: 4.5 million become unpaid carers in a matter of weeks

New figures released for Carers Week (8th – 14th June 2020) show an estimated 4.5 million people in the UK have become unpaid carers as a result of the Covid-19 pandemic. This is on top of the 9.1 million unpaid carers who were already caring before the outbreak, bringing the total to 13.6 million.

2.7 million women (59%) and 1.8 million men (41%) have started caring for relatives who are older, disabled or living with a physical or mental illness. Typically, they will have been supporting loved ones from afar, helping with food shopping, collecting medicine, managing finances and providing reassurance and emotional support during the pandemic. Some will have taken on intense caring roles, helping with tasks such as personal care, moving around the home, administering medication and preparing meals.

2.8 million people (62%) who have started caring since the outbreak are also juggling paid work alongside their caring responsibilities, highlighting the need for working carers to be supported as they return to offices and work sites.

The six charities supporting Carers Week - Carers UK, Age UK, Carers Trust, Motor Neurone Disease Association, Oxfam GB and Rethink Mental Illness – are calling on the UK Government to recognise and raise awareness of the role unpaid carers are playing during the pandemic and ensure they are supported through it, and beyond.

Both unpaid carers (71%) and adults without caring responsibilities (70%) said managing the stress and responsibility of being an unpaid carer was/ would be the top challenge when caring. Families are under a huge amount of pressure managing their caring roles and are worried about how they will cope in the weeks and months ahead.

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