INTERNATIONAL REPORTS

Responses to 2.06. Other impacts of the pandemic on people who use and provide Long-Term Care


Argentina

Studies suggest that unpaid carer burden has increased. Some carers have stopped paid carers coming in (Sources: https://journal.ilpnetwork.org/articles/10.31389/jltc.76/;  https://pubmed.ncbi.nlm.nih.gov/32729446/#:~:text=Family%20was%20the%20primary%20provider,milder%20forms%20of%20the%20disease). Another study reported an increase in anxiety, insomnia, depression, worsening gait disturbance, and use of psychotropics to control behavioural symptoms in people living with dementia in the community (Source: https://www.frontiersin.org/articles/10.3389/fpsyt.2020.00866/full).

Last updated: August 4th, 2021


Australia

A report from Australia suggests increased care needs and reduced availability of paid services. Some retired carers experienced a drop in their funds. Unpaid carers of people living in residential care settings were concerned about their well-being (Sources: https://journal.ilpnetwork.org/articles/10.31389/jltc.76/).

Last updated: August 4th, 2021


Austria

A survey in Austria ‘among 100 low-income informal carers’ found that reduced availability of home care and community services as well as reduced support from other family members led to an increase in the amount of care provided by unpaid carers, and among 16% of surveyed participants reported ‘a reduction of paid work’.

Last updated: August 4th, 2021


Canada

Research found that unpaid carers were worried about the impact on their relatives with dementia and reported reduced or altered formal care support, as well as anxiety and feelings of burnout (Sources: https://journal.ilpnetwork.org/articles/10.31389/jltc.76/; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7952494/).

Last updated: August 3rd, 2021


England (UK)

People who are employed to work in social care

A survey of 296 frontline care workers that took place during July and August 2020, found that 81% indicated an increase in their workload since the onset of COVID-19 and 56% reported an increase in their working hours. Additionally, this found that 18% had to self-isolate, but nearly a fifth of those who needed to self-isolate did not receive any pay. The survey also found that 22% of care workers thought they had not received adequate COVID-19 training or clear guidance, and 16% had not had the necessary PPE to do their job safely. In another survey of 43 care home managers in England, staff had needed to isolate in 72% of care homes. Additionally, 43% of managers reported staffing shortages, with 1 in 3 having to use agency staff, who accounted for between 2 and 37% of their workforce. Providers generally reported receiving little support with surge staffing.

Unpaid or informal carers

Evidence suggests that, since the beginning of the COVID-19 pandemic, a substantial number of people have taken on new care responsibilities

Several reports on unpaid carers have shown that there has been an increase in unpaid carers, many of those who have cared prior to the pandemic have increased their care commitment, largely due to reduced availability of services (Sources: https://ltccovid.org/wp-content/uploads/2021/01/Lorenz_Comas_COVID_impact_unpaidcarers_preprint.pdf; https://www.carersuk.org/images/News_and_campaigns/Behind_Closed_Doors_2020/Caring_behind_closed_doors_Oct20.pdf; https://www.carersuk.org/images/News_and_campaigns/Behind_Closed_Doors_2020/Caring_behind_closed_doors_April20_pages_web_final.pdf; https://www.carersuk.org/images/CarersWeek2020/CW_2020_Research_Report_WEB.pdf; https://onlinelibrary.wiley.com/doi/full/10.1002/gps.5434; https://bmcgeriatr.biomedcentral.com/articles/10.1186/s12877-020-01719-0; https://www.tandfonline.com/doi/full/10.1080/13607863.2020.1822292; http://circle.group.shef.ac.uk/wp-content/uploads/2020/11/007_Aspect-Virtual-Cuppa-Report-4-compressed.pdf).

A Carers Week and an Office for National Statistics report show that the number of people providing unpaid care has increased substantially since the COVID-19 related lockdown measures were put in place in March 2020. The Office for National Statistics report states that 48% of people in the UK cared for someone outside their own household in April 2020. The Carers Week report estimates that 4.5 million people in the UK have become unpaid carers during the COVID-19 outbreak in the UK. The reports show that people who have taken on new care responsibilities continue to be more likely to be female, although there was a high proportion of men taking on new care responsibilities. Carers who have taken on care responsibilities since the onset of the COVID-19 pandemic were slightly younger (45-54 years) compared to the groups that are usually more like to provide care (aged 55-64). The most frequently reported reasons for an increase in care responsibility were increased care needs and the reduction or suspension of local services. The Carers Week report found that new carers were more likely to be working and to have children (under 18 years).

The amount care provided by family carers has increased

Carers UK have reported that care responsibilities have increased for most carers, with the average time spent caring increasing by 10 hours to 65 hours of unpaid care per week. However, a small proportion of carers have provided less care. An increase in care responsibility and time spent caring was reported among most unpaid carers of people with dementia (73%) (Source: https://www.alzheimers.org.uk/sites/default/files/2020-09/Worst-hit-Dementia-during-coronavirus-report.pdf). Many carers attributed the increase in time spent caring to the reduced availability of services. This proportion was particularly high among Black, Asian and Minority Ethnic (BAME) carers (Source: https://www.carersuk.org/images/News_and_campaigns/Behind_Closed_Doors_2020/Caring_behind_closed_doors_Oct20.pdf).

Carers express concerns

A survey by Carers UK showed that a large proportion of unpaid carers are concerned about what would happen to the care recipient if the unpaid carer became unable to provide care (87%). A second concern expressed was the risk of infection due to domiciliary carers entering people’s homes. Carers of people with dementia also reported that people with dementia had difficulty following the distancing rules and to understand why their routines had been disrupted (Source: https://www.tandfonline.com/doi/full/10.1080/13607863.2020.1822292).

Carers experience an impact on their finances

There is evidence of a negative impact on carers finances, with some incurring increased costs (food, bills, equipment) and a reduced ability to work or loss of employment (Sources: https://www.carersuk.org/images/News_and_campaigns/Behind_Closed_Doors_2020/Caring_behind_closed_doors_April20_pages_web_final.pdf; https://www.carersuk.org/images/News_and_campaigns/Behind_Closed_Doors_2020/Caring_behind_closed_doors_Oct20.pdf). While some carers highlighted that working remotely provided them with greater flexibility to manage care and work, others experienced greater challenges. Research on unpaid carers caring for someone outside their household found that carers with paid jobs worked fewer hours than other people in employment, and that female carers worked fewer hours than male carers. Financial pressure on carers was also illustrated through foodbank use, with 106,450 carers (1.76% of carers) reporting that their household had to rely on foodbanks in the past month. Foodbank use was higher among female and among young carers (aged 17-30). The research also showed that in the households of 228,625 unpaid carers, someone had gone hungry in the week prior to the survey. Again, this was higher among females and young carers (aged 17-30).

People with intellectual disabilities and autistic people

Relatively little systematic information is available concerning the impact of COVID-19 on the lives of people with intellectual disabilities and autistic people in England, although there is a consistent picture from blogs run by self-advocacy and other organisations in England (Sources: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/925820/covid-and-people-with-learning-disabilities-or-autism-easy-read_v2b.pdf; https://www.learningdisabilityengland.org.uk/what-we-do/keeping-informed-and-in-touch-during-coronavirus/connecting-people-including-webinars/) and surveys of people with intellectual disabilities in Scotland (Sources: https://inclusionscotland.org/wp-content/uploads/2020/04/Initial-Findings-Report-.pdf; https://www.scld.org.uk/wp-content/uploads/2020/06/SCLD-Coronavirus-Report-FINAL.pdf) and Wales (Sources: https://allwalespeople1st.co.uk/wp-content/uploads/2020/05/The-Effect-of-the-Coronavirus-Pandemic-on-People-with-Learning-Disabilities-Across-WalesPhaseOneFinalDraft.pdf; https://allwalespeople1st.co.uk/wp-content/uploads/2020/08/AMBER-The-Effect-of-the-Coronavirus-Pandemic-on-People-with-Learning-Disabilities-Across-Wales.pdf).

Care home providers

Financial impact

There are concerns about the viability of some care home providers, due to lower occupancy rates (as a result of a high number of deaths and people putting off entering care homes), and higher costs linked to additional staffing and PPE expenditure. Analysis by the Care Quality Commission published in July 2020 shows that there has been a substantial reduction in admissions to care homes during the pandemic, although the rates vary significantly. Admissions funded by local authorities for the week ending June 7, 2020, were on average of 72% (range 43 to 113%) of the number received in the same period in 2019. In contrast, self-funded admissions, were on average at 35% of the 2019 levels (25% to 51%). One source reported that the occupancy of care home beds dropped approximately 13% over the course of the pandemic.

Community-based care

Data from a survey by the Care Quality Commission showed that, as of May 2 to 8, 2020, around a fifth of agencies were caring for at least one person with suspected or confirmed COVID-19. Providers also reported that access to PPE was a big concern, with many instances of wrong or poor quality items being delivered. While homecare services were experiencing lower levels of activity (homecare hours were at 94% of pre-pandemic levels), Local Authorities continued to pay for planned hours, which helped to protect the providers they commission from, from the decrease in activity (Source: https://www.cqc.org.uk/sites/default/files/20200715%20COVID%20IV%20Insight%20number%203%20slides%20final.pdf).

Last updated: August 4th, 2021


England (UK)

A report on unpaid carers has shown that there has been an increase in unpaid carers, many of those who have cared prior to the pandemic have increased their care commitment, largely due to reduced availability of services. Many unpaid carers experienced worse physical and mental health outcomes and some experienced financial implications.

Last updated: August 4th, 2021


Germany

Lockdowns of nursing homes during the first wave led to physical activity programmes for residents being discontinued, as these were often provided by external providers. There were attempts to promote physical activity in-house although staff were not trained to provide it specifically (Source: https://www.frontiersin.org/articles/10.3389/fspor.2020.589214/full).

Carers reported reduced availability in paid services as reasons for increased care commitment (Sources: https://journal.ilpnetwork.org/articles/10.31389/jltc.76/; https://www.zqp.de/wp-content/uploads/ZQP-Analyse-Angeh%C3%B6rigeCOVID19.pdf; https://www.dak.de/dak/download/studie-2372026.pdf).

Last updated: August 4th, 2021


India

Unpaid carers worried about protecting their relatives with dementia, keeping the occupied inside the house and adhering to hygiene measures. Unpaid carers found working and caring challenging and expressed concerns about financial implications. Formal and informal networks were less well accessible and there was difficulty in accessing medical care (Sources: https://journal.ilpnetwork.org/articles/10.31389/jltc.76/; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7340037/).

Last updated: August 3rd, 2021


Italy

Unpaid carers of people with dementia reported that caring was more challenging, experienced high stress levels, and other negative implications (https://journal.ilpnetwork.org/articles/10.31389/jltc.76/; https://www.frontiersin.org/articles/10.3389/fpsyt.2020.578015/full).

Last updated: August 3rd, 2021


Japan

There is limited information. One article points to challenges in the use of technology/remote consultations with older population, plus financial pressures on care providers.

Last updated: August 4th, 2021


Netherlands

The high numbers of deaths in nursing home affected the occupancy rate of homes which led to loss of income especially of those hardest hit by the pandemic. The government sought to address this through payments for providers (Source: https://ltccovid.org/wp-content/uploads/2020/11/COVID-19-Long-Term-Care-situation-in-the-Netherlands-_-the-second-wave-25-November-2020-2.pdf).

Last updated: August 3rd, 2021


Netherlands

The high numbers of deaths in nursing home affected the occupancy rate of homes which led to loss of income especially of those hardest hit by the pandemic. The government sought to address this through payments for providers (Source: https://ltccovid.org/wp-content/uploads/2020/11/COVID-19-Long-Term-Care-situation-in-the-Netherlands-_-the-second-wave-25-November-2020-2.pdf).

A report from November 2020 indicates that unpaid carers in the Netherlands have experienced more pressure and stress in their caring role since the COVID-19 pandemic.

Last updated: August 4th, 2021


United States

Many unpaid carers in the United States increased their care commitment as reduced community services were available. Carers reported experiencing delayed access to medical care and expressed financial concerns. Carers also reported increased stress, conflicts, isolation and other negative implications (https://ltccovid.org/wp-content/uploads/2021/01/Lorenz_Comas_COVID_impact_unpaidcarers_preprint.pdf; https://ucsur.pitt.edu/files/center/covid19_cg/COVID19_Full_Report_Final.pdf; https://ucsur.pitt.edu/files/center/covid19_cg/COVID19_Full_Report_Final.pdf; https://www.usagainstalzheimers.org/covid-19-surveys; https://academic.oup.com/psychsocgerontology/article/76/4/e241/5895926).

Last updated: August 3rd, 2021