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COVID-19

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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