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CARING BEHIND CLOSED DOORS: SIX MONTHS ONThe changing nature of careEven before the COVID-19 pandemic, carers were providing substantiallevels of care with many caring around the clock. In our research in April2020, 70% of carers told us they were providing more care than normaland the results in this section show this has risen even further. Increased levels of careI was concerned that [the care workers] would bringCovid into the household and therefore cancelledthe care workers. My family are doing it betweenus instead until the pandemic is over or a vaccine isintroduced.”81% of carers reported that they were providing morecare since the start of the outbreak for one or morereasons – an 11% rise in only six months. Only 5% ofrespondents reported providing less care. It has been the hardest 6 months of my life and I amdreading another lockdown.”When asked for further details, two in five carers (40%)said they are providing more care because the needs ofthe person they care for have increased. Local servicesreducing or closing was another common reason forproviding more care, with 38% of respondents selectingthis option. 26% of carers said they are providing morecare because someone they rely on for breaks was nolonger available and 15% said they were providing morecare because they were worried about paid health andsocial care staff having contact with the person theycare for.There is nowhere for [my autistic children] to go as allsupport services are closed or online. This is hard onall our mental health.”Having to spend more time arranging the practicalside of Dad’s care and the emotional side has meantI’ve felt a lot more pressure juggling this with my paidwork and the family.”92% of BAME (Black, Asian and Minority Ethnic) carersreported that they were providing more care since thestart of the outbreak. The most common reason cited byBAME carers for providing more care was local servicesbeing reduced or closed (49%), with an increase inthe needs of the person they care for (42%) being thesecond most common reason.Changes in care needs and impact8 out of 10 (78%) carers reported that the needs of theperson they care for have increased since the COVID-19pandemic. Just 2% of carers reported that the needs ofthe person they care for have decreased since the startof the COVID-19 pandemic. Increased care needs havehad an impact on carers in a number of ways.77% of carers who are caring for their spouse/partnerreported providing more care since the start of thepandemic. In comparison, carers looking after a parent(82%) and parents caring for their disabled or ill son ordaughter (87%) were more likely to report an increasein the care they have provided since the start of theCOVID-19 pandemic.58% of carers reported that this increase has made themmore stressed. Half (51%) of carers report that this hadan impact on their health and wellbeing. Half (50%)of carers also reported that the increased needs of theperson they care for had impacted their ability to takea break, and 41% said the increase in care needs hadimpacted their relationship with the person they carefor. Almost half (49%) of working carers said that thisincrease had impacted on their ability to juggle paid workwith caring. Despite an increase in needs, there have beenchallenges in getting the right adaptations, even for thosewho had been waiting since before COVID-19.The survey findings indicate that carers are providingan average of 10 hours more care, with respondentsproviding 55 hours a week on average before the startof the pandemic and 65 hours a week since. Manywere caring around the clock for more than 90 hoursper week.08

CARING BEHIND CLOSED DOORS: SIX MONTHS ON The people I care for are more demanding than theyused to be, because we are around each other 24/7 itbecomes difficult to “like” each other and get along.”Some of the comments from carers suggest thatshielding had a detrimental impact on the mental andphysical health of people receiving care, which in turnmade things more difficult for them. His hearing has deteriorated and so has his speech.He finds it very hard to join in online socialising andoften declines. I feel he is losing contact/interest inhis family.”[The person I care for] became physically weaker.Their mental wellbeing suffered.” My husband still feels he needs to shield whichI understand. He has lost his confidence to go outwhich has impacted his mental health more.”During lockdown my mother’s mobility hasdecreased due to her not being able to do anyactivities . I am trying to work full time from herhome whilst caring for her and giving medicationsa district nurse would do.” It had a very negative impact on Mum, she was bored,agitated and felt I was keeping her a prisoner. Verysad time.”I feel very distant and concerned for my relative whois in a care home, I was a very regular visitor and fullyinvolved in supporting with their care (hair washing,nails etc.) – my concern is the lack of contact fornearly six months will have had a massive impacton their dementia and their wellbeing.”21% of carers said they were formally advised to shieldthemselves and many said that they found shieldinga stressful and lonely experience. 6% of those advisedto shield were unable to, with some of this group citingtheir caring role as the reason for not shielding, becausethey had no choice but to leave home to buy food andcollect medication for example. 22% of carers choseto shield due to worries about exposure to COVID-19.Many of those who shielded for another reason (14%)also cited that they did so to keep their family safe.Experiences of shieldingThree quarters (76%) of carers reported that the peoplethey care for shielded – more than a third (36%) ofthose receiving care shielded after being formallyadvised to, while a further 40% chose to shield dueto concerns about exposure to COVID-19 or anotherreason. Many of this latter cohort were people livingwith conditions or health issues not included on theGovernment’s shielded patients list, but who chose toshield for their own safety from the virus. I am more anxious about going out than I have everbeen in my life. My boundaries have narrowed. It isso lonely.”Whilst responses suggest that over half (51%) ofcarers shielded, responses also indicated that there isongoing confusion amongst carers about the meaningof shielding, with some stating that they shielded, butalso that they left their home for essentials.Just 2% of carers reported that people they caredfor who were advised to shield had not been able to.Within this group were carers who said their friends orfamily members struggled with their mental healthand needed to leave the home, or had a conditionsuch as Alzheimer’s Disease that meant they did notunderstand or remember the shielding rules.09

CARING BEHIND CLOSED DOORS: SIX MONTHS ONBereavementLosing the person they care for can be a devastating experience forcarers at any time and those who lost someone since the start of thepandemic shared their experience of how COVID-19 affected this difficulttime and the impact it had on them. Many carers shared that this hasbeen a very isolating experience. Mum died in April after coming out of hospital andstaying in a care home for about five weeks. She haddementia and didn’t understand that we couldn’tthen be with her during lockdown. Before that, whenshe had been in hospital we had visited her dailyso she must have felt abandoned and I think thishastened her death by months.”I feel that I am not able to grieve properly. Althoughsome equipment which mum used was takenaway quickly I still haven’t been able to dispose ofmedicines as our small local pharmacy does not haveenough available space. I still have controlled drugsat home.” I had a very upsetting phone call from the consultantexplaining that the only option [for my husband]was palliative care, it’s very hard receiving news likethis especially as I am by myself but also becauseof Covid no-one could give me a hug.”Waving at my terminally ill husband through thehospital window was devastating for both of us.To be allowed to be with him for only the last 40minutes of his life was useless to both of us, leavingme torn apart with inconsolable guilt and grief.” Because of Covid I had to [provide end of life care]virtually single handed, I found this very stressful asI wanted to let him die at home as he wished butI felt ill equipped to this. I am proud of myself thatI managed to do this but I don’t think I could havecoped for much longer by myself.”10

CARING BEHIND CLOSED DOORS: SIX MONTHS ONAccess to breaks and servicesCarers have a right to a life beyond their caring responsibilities but priorto the COVID-19 pandemic, research showed that 40% hadn’t had a dayoff for more than a year, and a quarter (25%) for more than five years8.Care and support services provide many carers with a break from caring,however, large numbers of these services have been unavailable inrecent months.Taking a break from caringA minority of respondents (27%) indicated that theyhad been able to take some sort of break during theCOVID-19 pandemic, with a variety of different reasonsprovided.Almost two thirds of respondents (64%) said that theyhad not been able to take any breaks from their caringrole during the COVID-19 pandemic, while one in five(19%) said that they had not been able to take as manybreaks as they felt they needed. A clear majority ofcarers (79%) selected at least one of these two optionsindicating that they had not been able to take any, orsufficient, breaks during the pandemic. I have been able to take a break when my familyor friends provide care (15%). I have been able to take a break because I formeda support bubble (3%). I have been able to take a break when the person Icare for goes to a day or other support service (4%).The reasons given by carers for why they had not beenable to take a break were wide ranging, with manypointing to lockdown or shielding restrictions, or notbeing able to rely as much on friends and family. It isclear that this has had a severe impact on them. I have been able to take a break when the person Icare for goes to overnight care services outside thehome (eg care homes) (2%). I have been able to take a break by accessing homecare support (4%).I have struggled hugely being with my husband24/7, unable to have a break from caring. There aretimes I think I can’t go on, but of course I have to.Sometimes I don’t want to wake up in the morning.” I have been able to take a break by accessing onlineactivities (3%). My usual activities like fitness class, carers cafe orother social activities either haven’t returned or havebeen limited, which were valuable to my wellbeing.”I used to get a break by family helping but as theyhave jobs and their own family they cannot riskhelping. It’s all down to me now.”I’m doing at least 14 hours of intense caring a day.I get an average of 5.5hrs sleep and eat most ofmy meals ‘on the move’. Never get to relax or reada book. With increasing restrictions, I can’t see myextended family at home, or visit a friend who is mymain support.”8 Carers UK (2017) State of Caring11

CARING BEHIND CLOSED DOORS: SIX MONTHS ONLimited access to support servicesCarers were also asked about their experiencesof accessing different support services duringthe COVID-19 pandemic and the impact thishas had. The responses show that many carersare still unable to access services which theypreviously relied on, as many of these have notreopened or returned yet, in their area.9This continuedthroughoutthe pandemicThis hasreopened/returned butI am gettinga lower levelof supportthan beforeThis hasreopened/returned andI am gettingthe same levelof supportas beforeThis hasreopened/returnedbut I am notusing itThis has notreopened/returned in myareaDay services9%24%8%10%49%Care Home23%12%7%23%35%Residential Care16%14%6%21%43%Specialist schools3%28%44%16%8%Before and/or after schoolprovision for a disabled child2%15%11%17%55%Activities provided by a localCarers Organisation11%15%4%8%61%Activities/support providedby a local charity (eg mealson wheels)11%12%3%9%65%Visits from paid care workers42%21%16%11%11%Sitting service16%13%19%16%36%3%16%7%13%62% Other breaks servicesI would normally get 84 respite nights per year. I’vebeen offered 12 between now and January 2021.Didn’t get any during lockdown. Day service shutduring lockdown but they did provide some supportand have now reopened but a shorter day.” I share the view of other carers in my situation thatwe are all crumbling if we can’t get a break of somekind. We also agree that our adult children want abreak away from us! Day services gave my son a life,friends, interests and often inspired him to do thingson his own. Now they have gone, he is bored, angry,a lot of shouting. It’s exhausting!” All respite provision has been withdrawn, no respitesince last December! Day care provision was 30hours a week, presently two hours twice a week withno transport provision.”9 Please note the table above includes only respondents who are serviceusers of this particular service, ie people who were using the service beforelockdown and/or are using it now12

CARING BEHIND CLOSED DOORS: SIX MONTHS ONHealth, wellbeing and emotional impactThe 2011 Census and the more recent GP patient survey by NHS Englandhave shown that carers were more likely than non-carers to have poorhealth before the COVID-19 pandemic10. Given the huge increase incaring being provided, and the fact that this is often without any breaks,it is unsurprising that carers are feeling the pressure and seeing anadditional impact on their own health and wellbeing.Health impact of the pandemic on carersLonelinessAlmost two thirds of carers (64%) say that their mentalhealth has worsened as a result of the COVID-19pandemic. This was significantly higher for carers whowere struggling financially (74%). 65% of women said theirmental health had suffered compared to 58% of men.Only 30% of respondents reported having a networkof people around them to support them, and 48%reported feeling lonely and cut off from people.This is perhaps due to the fact that less than half(48%) of carers feel they are able to keep in contactwith neighbours, family or members of their localcommunity.58% of carers say their physical health has worsenedas a result of the COVID-19 pandemic. This was slightlylower for men (54%) compared with (58%) of women,but carers who were struggling financially had seen ahigher impact on their physical health with 70% havingseen it worsen as a result of the pandemic.Carers who were struggling financially were more likelyto be facing loneliness with 19% saying they had anetwork of people around them and 62% saying theyfeel lonely and cut off from people. The impact of the pandemic on carers’ health is farreaching with 70% of carers having reduced theamount of physical activity they are taking part insince the start of the pandemic. This rises to 74% ofBAME carers and 74% of carers who said that they arestruggling financially. Only 29% of carers feel that theyhave been able to maintain their health and wellbeingduring the pandemic and only 43% have been able tomaintain a healthy diet.I am a shadow of what I was before going intolockdown. I am lonely, fed up and depressed, yetI can’t show these traits and must carry on mycaring duties, no matter what. It worries me thatcarers who are in the same position as myself willbe feeling the same and may do drastic things toescape.” I have had to stop my hobbies such as guitar lessons,my friend has not been able to visit, and these twothings gave me a chance to forget about my caringrole for a few hours. I have really missed being ableto talk to someone and feel very worried and anxiousbecause I have no-one to talk to.”My depression and anxiety have rocketed, I haven’tbeen able to follow a healthy diet and I haven’t hadchance to do any exercise the lockdown has ruinedso many things.” I am putting my health needs on a back burner asall my physical and mental energy goes on caring formy husband.”Mostly, I just feel really lonely. I don’t feel that I cantell people about my situation as I feel that it wouldbe disloyal somehow to Mum and I fear that peopleget bored listening to me moaning on.”I used to attend Pilates classes which helped withthe maintenance of my back and can no longer dothis. Someone needs to be here for Mum at all timesso I am unable to go out with my husband . Wehave looked after my Mum for 20 years and now feelthat life is passing us by.”10 Carers UK (2019) Facts about carers 201913

CARING BEHIND CLOSED DOORS: SIX MONTHS ONWorries about the future and contingencyExhaustionWhilst 50% of carers said that they feel able to managetheir caring role at the moment, 22% are worried aboutbeing able to care safely due to a lack of knowledge,information or equipment.Carers reported high levels of fatigue and stress,with almost three quarters (74%) reporting feelingexhausted and worn out as a result of caring during theCOVID-19 pandemic. Shockingly 44% of carers say theyare reaching breaking point.57% of carers are worried about what happens in case ofan emergency as they do not have a contingency plan inplace – this rises to 63% of carers who have not had anybreak since the start of the COVID-19 pandemic.Not having any break during the pandemic clearly hasan impact on levels of burnout, with 79% of carersin this position reporting feeling exhausted and wornout and half (50%) saying they are reaching breakingpoint. 51% of carers who reported that the needsof the person they care for have increased since thestart of the COVID-19 pandemic say they are reachingbreaking point.Over two thirds of carers (67%) are worried abouthow they would cope if further lockdowns or localrestrictions were introduced. This is higher for BAMEcarers, of whom 73% are worried about how theywould cope in this situation. 63% of carers are worried about how they will managethis winter with comments indicating that theyare worried about the impact of weather, seasonalillnesses, reduced chances to get outside and their ownhealth. This is higher for BAME carers (72%), carers whoare struggling financially (78%), working carers (66%)and carers who haven’t had any break since the startof the COVID-19 pandemic (66%).I am exhausted. I was caring for two people at thestart of the lockdown, sadly one person has nowpassed away, but the health of the second personhas deteriorated further so there is no let-up in theamount of caring required. 24/7 with no breaks.” I feel distraught and shattered everyday.”I still

CARING BEHIND CLOSED DOORS: SI MONTHS ON, EMBARGOED OBER, Worse health and wellbeing , Caring for someone can be challenging and many previous research reports have evidenced the impact on carers' physical and mental health.7Alongside the usual stresses, the coronavirus outbreak has added additional pressure.