LTCcovid Country Profiles

Responses to 2.07. Impacts of the pandemic on unpaid carers

The LTCcovid International Living report is a “wiki-style” report addressing 68 questions on characteristics of Long-Term Care (LTC) systems, impacts of COVID-19 on LTC, measures adopted to mitigate these impacts and new reforms countries are adopting to address structural problems in LTC systems and to improved preparedness for future events. It is compiled and updated voluntarily by experts on LTC all over the world. Members of the Social Care COVID-19 Resilience and Recovery project are moderating the entries and editing as needed.

The report can be read by question/topic (below) or by country: COVID-19 and Long-Term Care country profiles.


To cite this report (please note the date in which it was consulted as the contents changes over time):

Comas-Herrera A, Marczak J, Byrd W, Lorenz-Dant K, Patel D, Pharoah D (eds.) and LTCcovid contributors. LTCcovid International living report on COVID-19 and Long-Term Care. LTCcovid, Care Policy & Evaluation Centre, London School of Economics and Political Science. https://doi.org/10.21953/lse.mlre15e0u6s6

Copyright is with the LTCCovid and Care Policy and Evaluation Centre, LSE.


 

Overview

As discussed in section 3.12 (Measures to support unpaid carers)., in many countries guidance and measures to support unpaid carers was issued relatively late in the pandemic. At the same time, many carers having to provide additional care due to reductions in formal care or in care from other unpaid carers. In contrast, unpaid carers of people living in care homes were forced to reduce the amount of care they provided as their access to care homes was restricted (O’Caoimh R., et al., 2020 and Smaling et al, 2021).

Brief overview of research evidence on the impact of the pandemic on unpaid carers:

The evidence base on the impacts of the pandemic on unpaid carers is growing. A rapid review of the impacts of COVID-19 on unpaid carers of adults with long-term care needs, covering evidence up to November 2020, identified 40 studies and the following key themes (Lorenz-Dant and Comas-Herrera, 2021):

  • – Increase in the care commitment by carers and the responsibilities they shoulder
  • – Great concern about the implications of COVID for the person they care for
  • – Reduced availability of formal and informal support structures
  • – Decreased ability to maintain employment
  • – Negative physical and mental health implications
  • – Negative financial implications
  • – Women, younger carers, people with existing financial difficulties and  those from minor groups were more at risk of negative outcomes
  • – Carers of people living in residential settings have experienced reduced contact and great worry about the quality of care and adverse consequences for their relatives.

A scoping review of the impact of the COVID-19 pandemic on family carers in the community, covering evidence published up to 16th July 2021 published in English, identified 52 articles. The findings were categorised into four key themes (Muldrew et al., 2021):

  • – Decline in psychological wellbeing
  • – Concerns about personal health and wellbeing
  • – Practical/logistical concerns
  • – Removal or uncertainty of support
Impacts on care partners/family carers of people living with dementia

A systematic review of the psychological consequences of the pandemic on care partners of people with dementia and people with dementia suggests that the psychological and physical burden experienced during COVID-19 has increased greatly and that the clinical condition of the persons with dementia has worsened. The increase in perceived burden appears to be higher for those caring for people with more severe dementia (Carbone et al, 2021).

Exacerbation of gender inequalities in caring

A Spanish study examined gender differences in the experiences of unpaid carers during the pandemic and found that female carers experienced a bigger increase in caregiving intensity and burden and a stronger deterioration in self-perceived health than male carers. This appeared to be linked to men experiencing fewer reductions in informal support. However, men who provided high intensity care experienced deteriorations in health similar to female carers (Del Rio et al., 2022). Similarly, Carbone et al (2021) also report that female gender was a risk factor for worse psychological outcomes for unpaid carers of people living with dementia.

Positive experiences

While most of the outcomes for carers reported in the literature are negative, a qualitative study in Australia focusing on positive experiences arising from COVID-19 among unpaid carers of people with dementia found positive caring experiences in all timeframes, reporting stronger and closer caring relationships and developed self-care strategies (Tulloch et al., 2022)

References:

Carbone, E. A., de Filippis, R., Roberti, R., Rania, M., Destefano, L., Russo, E., De Sarro, G., Segura-Garcia, C., & De Fazio, P. (2021). The Mental Health of Caregivers and Their Patients With Dementia During the COVID-19 Pandemic: A Systematic Review. Frontiers in psychology, 12, 782833. https://doi.org/10.3389/fpsyg.2021.782833

Del Río-Lozano M, García-Calvente M, Elizalde-Sagardia B, Maroto-Navarro G. (2022) Caregiving and Caregiver Health 1 Year into the COVID-19 Pandemic (CUIDAR-SE Study): A Gender Analysis. International Journal of Environmental Research and Public Health;19(3). https://doi.org/10.3390/ijerph19031653

Lorenz-Dant, K. and Comas-Herrera, A., 2021. The Impacts of COVID-19 on Unpaid Carers of Adults with Long-Term Care Needs and Measures to Address these Impacts: A Rapid Review of Evidence up to November 2020. Journal of Long-Term Care, (2021), pp.124–153. DOI: http://doi.org/10.31389/jltc.76

Muldrew, D. H. L., Fee, A., & Coates, V. (2021). Impact of the COVID-19 pandemic on family carers in the community: A scoping review. Health & Social Care in the Community, 00, 1–11. https://doi.org/10.1111/hsc.13677

O’Caoimh R, O’Donovan MR, Monahan MP, Dalton O’Connor C, Buckley C, Kilty C, Fitzgerald S, Hartigan I and Cornally N (2020) Psychosocial Impact of COVID-19 Nursing Home Restrictions on Visitors of Residents With Cognitive Impairment: A Cross-Sectional Study as Part of the Engaging Remotely in Care (ERiC) Project. Front. Psychiatry 11:585373. doi: 10.3389/fpsyt.2020.585373

Smaling HJA, Tilburgs B, Achterberg WP, Visser M. The Impact of Social Distancing Due to the COVID-19 Pandemic on People with Dementia, Family Carers and Healthcare Professionals: A Qualitative Study. International Journal of Environmental Research and Public Health. 2022; 19(1):519. https://doi.org/10.3390/ijerph19010519

Tulloch K., McCaul T and Scott T.L. (2022) Positive Aspects of Dementia Caregiving During the COVID-19 Pandemic, Clinical Gerontologist, 45:1, 86-96, DOI: 10.1080/07317115.2021.1929630

International reports and sources

Evidence Reviews:

Carbone, E. A., de Filippis, R., Roberti, R., Rania, M., Destefano, L., Russo, E., De Sarro, G., Segura-Garcia, C., & De Fazio, P. (2021). The Mental Health of Caregivers and Their Patients With Dementia During the COVID-19 Pandemic: A Systematic Review. Frontiers in psychology, 12, 782833. https://doi.org/10.3389/fpsyg.2021.782833

Lorenz-Dant, K. and Comas-Herrera, A., 2021. The Impacts of COVID-19 on Unpaid Carers of Adults with Long-Term Care Needs and Measures to Address these Impacts: A Rapid Review of Evidence up to November 2020. Journal of Long-Term Care, (2021), pp.124–153. DOI: http://doi.org/10.31389/jltc.76

Muldrew, D. H. L., Fee, A., & Coates, V. (2021). Impact of the COVID-19 pandemic on family carers in the community: A scoping review. Health & Social Care in the Community, 00, 1–11. https://doi.org/10.1111/hsc.13677

Studies suggest that unpaid carer burden has increased. Some carers have stopped paid carers coming in.

Last updated: January 2nd, 2022


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 (Lorenz-Dant and Comas-Herrera, 2021).

A six-wave longitudinal study by Abbasi-Shavazi et al., (2022) also illustrated that COVID19 had a more sever impact on carers relative to non-carers in terms of life satisfaction and psychological distress. However, the study also noted that free childcare was important to carers’ wellbeing (more than to non-carers) as the additional burden of caring for young children and older person/person with disability may have explained the greater deterioration of life satisfaction and psychological distress of carers.

Positive impacts for unpaid carers of people living dementia

A study by Tulloch et al., (2021) sought to identify positive impacts of the pandemic for unpaid carers of individuals with dementia. Interviews were conducted between June and August 2020 (during the second wave of the pandemic), and participants were asked about their experiences and perceptions of care before, during, and moving forward from COVID-19. Interestingly, when asked about their perceptions of care prior to the pandemic, interviewees tended not to discuss aspects of care that related to their own strengths or benefits: answers revolved around perceptions of the experiences of the person with dementia for whom they were providing care. In contrast, when discussing the provision of care during the pandemic, participants elaborated on their own caregiving experiences and what they saw as important values in the act of caregiving. In addition to these metacognitive elements, changes in behavioural approaches to providing care during the pandemic were reported, such as engaging in self-care strategies and seeking and accepting additional help when needed. Furthermore, participants expressed a desire to continue to engage with these behaviours beyond the pandemic. This research suggests that the pandemic may have provided those who provide informal care to people with dementia with an important opportunity to find profound meaning in the care they provide, and a recognition of the importance of looking after themselves to strengthen their provision of care.

References:

Abbasi-Shavazi, A., Biddle, N., Edwards, B. and Jahromi, M. (2022) Observed effects of the COVID-19 pandemic on the life satisfaction, psychological distress and loneliness of Australian carers and non-carers, 6(1-2): 179–209, International Journal of Care and Caring, DOI: 10.1332/239788221X16323394592678

Lorenz-Dant, K. and Comas-Herrera, A., 2021. The Impacts of COVID-19 on Unpaid Carers of Adults with Long-Term Care Needs and Measures to Address these Impacts: A Rapid Review of Evidence up to November 2020. Journal of Long-Term Care, (2021), pp.124–153. DOI: http://doi.org/10.31389/jltc.76

Tulloch, K., McCaul, T., & Scott, T. L. (2021). Positive Aspects of Dementia Caregiving During the COVID-19 Pandemic. Clinical Gerontologist, 45(1), 86–96. https://doi.org/10.1080/07317115.2021.1929630/SUPPL_FILE/WCLI_A_1929630_SM0674.DOCX

Last updated: March 4th, 2022   Contributors: Daisy Pharoah  |  


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: January 6th, 2022


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: January 6th, 2022


A qualitative study conducted during May to December 2020 with family members of residents in nursing homes in different parts of Finland found that both family members and residents experienced grief, anxiety and severe stress. Family members were concerned that the residents lives were at risk due to lack of social contact and activity. They also expressed frustration at not being able to contribute to the care of their relatives or to touch them, when visits were allowed (Paananen et al, 2021).

References:

Paananen J, Rannikko J, Harju M, Pirhonen J (2021) The impact of Covid-19-related distancing on the well-being of nursing home residents and their family members: a qualitative study. International Journal of Nursing Studies Advances, 3. https://doi.org/10.1016/j.ijnsa.2021.100031.

Last updated: February 1st, 2022


A qualitative study by Giraud et al., (2022) reported that the reduction or suspension of medico-social service worsened the situation of family carers who receive cash for care payments in France. Family carers reported higher levels of fatigue and tensions. Most carers were left on their own with the reorganisation of the care systems and very few received support or guidance from the administration.

References:

Giraud, O., Petiau, A., Touahria-Gaillard, A., Rist, B. and Trenta, A. (2022). Tensions and polarities in the autonomy of family carers in the context of the COVID-19 pandemic in France, 6(1-2): 141–156, International Journal of Care and Caring, DOI: 10.1332/239788221X16316514499801

Last updated: March 8th, 2022


Greater responsibility and less support

A survey among family carers of older people in April/May 2020 found that 39% of unpaid carers agreed that they had greater care responsibility as previous support had disappeared. This was linked both to reductions in support from neighbours and family, and to a reduction in formal care (particularly day care) (Eggert et al., 2020).

References

Eggert, S., Teubner, C., Budnick, A., Gellert, P. & Kuhlmey, A. (2020) Pflegende Angehörige in der COVID-19-Krise: Ergebnisse einer bundesweiten Befragung. Available at: https://www.zqp.de/wp-content/uploads/ZQP-Analyse-Angeh%C3%B6rigeCOVID19.pdf (Accessed 31 January 2022).

Last updated: February 12th, 2022   Contributors: Klara Lorenz-Dant  |  


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 (Vaitheswaran et al., 2020).

References:

Vaitheswaran, S., Lakshminarayanan, M., Ramanujam, V., Sargunan, S., & Venkatesan, S. (2020). Experiences and Needs of Caregivers of Persons With Dementia in India During the COVID-19 Pandemic-A Qualitative Study. The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry, 28(11), 1185–1194. https://doi.org/10.1016/j.jagp.2020.06.026

Last updated: January 6th, 2022


Quantitative evidence

An online survey of 225 relatives of people living in care homes carried out in June 2020 examined the perceived  impacts of visiting restrictions on perceived loneliness, well-being and carer quality of life. The study found that many visitors experienced low psychosocial and emotional well-being during, the impacts were greater among relatives of people with cognitive impairment. Almost a fight of respondents reported that support for their role as carers from staff in the care homes had been poor and this had impacted their quality of life. Most respondents also reported that they perceived that the residents were not coping well (O’Caoimh R., et al., 2020).

References:

O’Caoimh R, O’Donovan MR, Monahan MP, Dalton O’Connor C, Buckley C, Kilty C, Fitzgerald S, Hartigan I and Cornally N (2020) Psychosocial Impact of COVID-19 Nursing Home Restrictions on Visitors of Residents With Cognitive Impairment: A Cross-Sectional Study as Part of the Engaging Remotely in Care (ERiC) Project. Front. Psychiatry 11:585373. doi: 10.3389/fpsyt.2020.585373

Last updated: January 9th, 2022


Unpaid carers of people with dementia reported that caring was more challenging, experienced high stress levels, and other negative implications. This was atttirbuted to the impact of restrictive measures, fear of contagion and feeling abandoned by the usual services and other forms of support that were disrupte by the pandemic (Cagnin et al., 2020 and Chirico et al. 2022).

References:

Cagnin A., Di Lorenzo R., Marra C., et al. (2020) Behavioral and Psychological Effects of Coronavirus Disease-19 Quarantine in Patients with Dementia. Frontiers in Psychiatry 11. https://doi.org/10.3389/fpsyt.2020.578015

Chirico, I.Ottoboni, G.Giebel, C.Pappadà, A.Valente, M.Degli Esposti, V.Gabbay, M., & Chattat, R. (2022). COVID-19 and community-based care services: Experiences of people living with dementia and their informal carers in ItalyHealth & Social Care in the Community001– 10https://doi.org/10.1111/hsc.13758

Last updated: March 7th, 2022   Contributors: Klara Lorenz-Dant  |  Adelina Comas-Herrera  |  


At the beginning of the pandemic, when there were curfews in place, the list of people exempt from the curfew did not include unpaid carers or paid home care workers, it is expected that this forced some caregivers to have made life changes in order to continue providing care (for example moving in together).

The loss of routine activities may have resulted in loss of the social and practical support that many carers rely on, for example through church activities.

The banning of visitors to long-term care facilities may have also affected the ability of carers to provide adequate supplies of medication and toiletries, as well as emotional support to their relatives.

Source: https://ltccovid.org/wp-content/uploads/2020/05/The-COVID-19-Long-Term-Care-situation-in-Jamaica-25-May-2020-1.pdf

Last updated: January 2nd, 2022


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.

Impacts on family carers of people living with dementia

A qualitative study involving semi-structured interviews with family and professional carers of people with dementia found that family carers of people living dementia found difficult to cope with visiting restrictions, experienced anxiety regarding safety and had higher carer burden.

Relatives of people living in care homes reported that video calling and window visits were difficult as people with dementia often found it difficult to communicate in this way or use equipments, but relatives stated that this was better than no communication. They also worried that their relatives with dementia would no longer recognise them when the restrictions were lifted. Their carer burden was reduced, but they felt sidelined as they were no longer able to continue providing care.

Carers of people living in the community tried to keep the “bubble” around the person with dementia small. They worried about professional carers not adhering to safety measures and experienced higher care burden.

References:

Smaling HJA, Tilburgs B, Achterberg WP, Visser M. The Impact of Social Distancing Due to the COVID-19 Pandemic on People with Dementia, Family Carers and Healthcare Professionals: A Qualitative Study. International Journal of Environmental Research and Public Health. 2022; 19(1):519. https://doi.org/10.3390/ijerph19010519

Last updated: January 6th, 2022


A qualitative study among informal carers of people with dementia, indicated that increased caring responsibilities during pandemic (e.g. due to closures of social and medical services) have led to lower mental and physical well-being for carers, leading to  causing sleep disturbances, depression or anxiety as well as increasing carer burnout (Mackowiak et al. 2021).

References:

Mackowiak, M.; Senczyszyn, A.; Lion, K.; Trypka, E.; Malecka, M.; Ciulkowicz, M.; Mazurek, J.; Swiderska, R.; Giebel, C.; Gabbay, M.; et al. The Experiences of
People with Dementia and Informal Carers Related to the Closure of Social and Medical Services in Poland during the COVID-19 Pandemic – A Qualitative Study. Healthcare. https://doi.org/10.3390/ healthcare9121677

Last updated: March 7th, 2022   Contributors: Joanna Marczak  |  


The impact on families and, specifically on women, has been intense and, in some cases, devastating due to the loss of support and essential social networks for care, disrupting the process of extension and externalization of care. This has caused the reorganization of care and a change in the mosaic of care (Soronellas and Comas-d’Argemir, 2017). The closure of day centres, the crisis in residences, the reduction of Home Help Service (SAD), the loss of some paid workers, the fear of contagion and the strict home confinement of older people have transferred care responsibilities to households. As a result, care has been refamiliarised, and, with it, women have absorbed much of the impact of the pandemic (Soronellas and Jabbaz, 2021).

The pandemic removed the option of residential care and day centres, with extended family networks and the community needing to take more care on. While some day centres carried out home visits, this was not enough to replace the support they used to provide, particularly in terms of physiotherapy and other therapeutic inputs (Soronellas and Jabbaz, 2021).

Family carers of medium and high socio-economic groups have suffered the economic consequences of the pandemic to a lesser extent. They have been able to hire paid carers to absorb the work overload caused by the closure or reduction of services. In contrast, care has been entirely within the family among carers from lower socioeconomic groups (Soronellas and Jabbaz, 2021).

A study by Del Rio-Lozano et al (2022), consisting of a cross-sectional survey carried out in two regions in Spain, found that the pandemic has exacerbated gender differences in unpaid care provision. They found that male unpaid carers experienced fewer reductions in informal support during the pandemic. Linked to this, female unpaid carers were more likely to have experienced increases in caring intensity and burden and deterioration of self-perceived health, compared to male unpaid carers. These differences in self-perceived health, however did not hold for men who provide high intensity of care.

References:

Del Río-Lozano M, García-Calvente M, Elizalde-Sagardia B, Maroto-Navarro G. (2022) Caregiving and Caregiver Health 1 Year into the COVID-19 Pandemic (CUIDAR-SE Study): A Gender Analysis. International Journal of Environmental Research and Public Health;19(3). https://doi.org/10.3390/ijerph19031653

Soronellas, Montserrat y Comas-d’Argemir, Dolors (2017): “Hombres cuidadores de personas adultas dependientes. ¿Estrategias ante la crisis o nuevos agentes de cuidado?”, en María Rosa Herrera y German Jaraiz (eds.), Pactar el Futuro. Debates para un nuevo consenso en torno al bienestar, Sevilla, Universidad Pablo de Olavide, 2221-2239.

Soronellas, Montserrat y Jabbaz, Marcela (2021), “Cuidadoras familiares, antes y depues de la pandemia”, en Comas-d’Argemir, Dolors y Bofill-Poch, Sílvia (eds.) (2021): El cuidado importa. Impacto de género en las cuidadoras/es de mayores y dependientes en tiempos de la Covid-19, Fondo Supera COVID-19 Santander-CSIC-CRUE Universidades Españolas. www.antropologia.urv.cat/es/investigacion/proyectos/cumade/

 

Last updated: March 21st, 2022   Contributors: Adelina Comas-Herrera  |  Carlos Chirinos  |  


Impact on family carers of care home residents

A longitudinal qualitative study carried out in the UK in Autumn 2020 and March 2021 found that family carers of people living in care homes expressed increasing anger and distress about lack of safe visiting, which included negative emotions and some resentment toward care home staff, and lack of trust towards both care homes and the government. Carers also reported feelings of guilt for what their relatives were experiencing and some reported that this was exacerbated by visits with physical barriers such as windows and screens (Giebel et al., 2022).

References:

Giebel, C.Hanna, K.Marlow, P.Cannon, J.Tetlow, H.Shenton, J.Faulkner, T.Rajagopal, M.Mason, S. & Gabbay, M. (2022). Guilt, tears and burnout—Impact of UK care home restrictions on the mental well-being of staff, families and residentsJournal of Advanced Nursing001– 12https://doi.org/10.1111/jan.15181

 

Last updated: March 11th, 2022


In a qualitative study based on co-resident family carers in Wales, interviewed carers stated the negative impact that staying at home (in response to government directives) during the lockdown had an overall negative impact on their subjective wellbeing, including increased depression and low mood. Social distancing measures were also said to strain personal relationships. Unpaid carers also experience lack of access to support services both for themselves and the person they cared for, which in turn  led to increased intensification of care responsibilities for co-resident carers (Cheshire-Allen, et al. 20022).

References: 

Cheshire-Allen, M. and Calder, G. (2022) ‘No one was clapping for us’: care, social justice and family carer wellbeing during the COVID-19 pandemic in
Wales, 6(1-2): 49–66, International Journal of Care and Caring, DOI: 10.1332/239788221X16316408646247

Last updated: March 4th, 2022


Impacts on health, wellbeing, and quality of life

Many carers have expressed the experience of stress and a negative impact on their physical and mental health. Carers UK (2020) reported that the negative impact on the mental health of carers was greater among carers experiencing financial difficulties. Research found that variations in hours of support were associated with higher levels of anxiety and lower levels of well-being (Giebel et al, 2021).

In a survey of approximately 300 largely family carers of adults with intellectual disabilities across the UK in July/August 2021, carers most commonly reported their caring role had affected them in terms of feeling tired (66%), a general feeling of stress (60%), or disturbed sleep (53%), with little change compared to previous surveys in December 2020-February 2021 and April-May 2021 (Willner et al., 2020).

In a study of community-dwelling adults with dementia and their carers (Rand et al, 2021), there was no significant association between the phases of the COVID-19 restrictions in England and carers’ care-related quality of life. Significant positive associations were found between care-related QoL and carer self-rated good health and satisfaction with social care support; negative associations were found with high-intensity caregiving (>50 hours per week), co-residence with the person with dementia, severe cognitive impairment and financial difficulties due to caring. The sample (n=313) reported high levels of unmet social care-related QoL need, with over 50% of the sample having unmet needs in five of the seven QoL domains (except self-care (32%) and personal safety (3%)).

Increase in numbers of people providing unpaid care

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.

Carers Week and Office for National Statistics reports 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).

Increase in care provided by family carers

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%). 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.

Concerns expressed by carers

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 understanding why their routines had been disrupted.

Impact on carers’ finances

Carer’s UK published evidence in April and October 2020 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. While some carers highlighted that working remotely provided them with greater flexibility to manage care and work, others experienced greater challenges. Research by Bennett et al. (2020) 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). (Bennett et al., 2020).

Impact on use of respite care for carers of individuals with dementia

The pandemic has heightened some of the demands of caring for people living with dementia as there have been fewer opportunities for social contact and breaks. A qualitative study conducted between March and December 2020 investigated the impact of COVID-19 on the views and expectations of 35 carers of people living with dementia about residential respite (i.e., staying in a care home for a short period of time).

Thematic analysis of interview data revealed that although residential respite is positive and provides some carers with an opportunity to take a break from caring (which is especially important during the pandemic as caregiver stressors may have been heightened), confidence in using respite was found to be compromised. This was for a variety of factors: firstly, carers described regularly negotiating the risks and stresses of the pandemic, weighing up changing family arrangements to facilitate caring and preventing infection. Secondly, the challenge of prioritising the needs of their relatives whilst bearing the impact of cumulative caregiving responsibilities was discussed. Participants in the study also revealed uncertainty about future residential respite due to anxieties around ongoing restrictions (such as quarantining before seeing visitors), availability (due to some care homes closing permanently during the pandemic), and disheartening sources of information about the pandemic (Samsi et al., 2022).

References:

Bennett, M., Zhang , Y., Yeandle, S. CARING and COVID-19 Hunger and mental wellbeing. University of Sheffield

Carers UK (2020). Caring behind closed doors: six months on. Retried from carersuk.org on 11/03/2022

Giebel, C., Lord, K., Cooper, C., Shenton, J., Cannon, J., Pulford, D., Shaw, L., Gaughan, A., Tetlow, H., Butchard, S., Limbert, S., Callaghan, S., Whittington, R., Rogers, C., Komuravelli, A., Rajagopal, M., Eley, R., Watkins, C., Downs, M., … Gabbay, M. (2021). A UK survey of COVID-19 related social support closures and their effects on older people, people with dementia, and carers. International Journal of Geriatric Psychiatry, 36(3), 393–402. DOI:https://doi.org/10.1002/GPS.5434

Samsi, K., Cole, L., Orellana, K., & Manthorpe, J. (2022). Is it worth it? Carers’ views and expectations of residential respite for people living with dementia during and beyond the COVID-19 pandemic. International Journal of Geriatric Psychiatry. https://doi.org/10.1002/GPS.5680

Rand S.E., Silarova B, Towers A.-M. and Jones K. (2021) Social care-related quality of life of people with dementia and their carers in England. Health and Social Care in the Community. https://doi.org/10.1111/hsc.13681

Willner, P., Rose, J., Stenfert Kroese, B., Murphy, G. H., Langdon, P. E., Clifford, C., Hutchings, H., Watkins, A., Hiles, S., & Cooper, V. (2020). Effect of the COVID-19 pandemic on the mental health of carers of people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 33(6), 1523–1533. DOI:https://doi.org/10.1111/JAR.12811

Last updated: March 11th, 2022   Contributors: Klara Lorenz-Dant  |  Stacey Rand  |  Chris Hatton  |  


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: January 6th, 2022


It should be noted here that the majority of care in Vietnam is informal and provided by unpaid carers. In fact, it is written into The Elderly Law that older people in Vietnam may choose to live with their children or grandchildren at their will; and indeed, many do. Thus, while there is no information on the impact of the pandemic on unpaid carers specifically, it is likely that the effects of the pandemic on households has a significant impact on those receiving care at home.

The economic impact of the pandemic in Vietnam, not unlike in most of the world, has been enormous, and has been felt by individuals through day-to-day consumption. For example, due to an increase in demand, there was an enormous price surge of preventative goods (such as face masks, which are also commonplace in Vietnam outside of pandemic times) in 2020. This resulted in as much as 20% of the household income of an average-income four-person household going towards such preventative items (Tran et al., 2020). As in many countries, a huge number of jobs were lost or severely compromised; particularly in the service industry, which contributes around 40% of the country’s GDP (source: Statista). With schools closed or online during most of 2020, parents struggled to balance work and childcare (and presumably care of their elderly family members), resulting in further income loss (Tran et al., 2020).

As an attempt by the government to mitigate some of the economic impact of the pandemic, daily food allowances were given to individuals in quarantine. However, these payments were small (between $1.79 and $2.59 per day) and so did not make up for loss of income or inability to work. Farmers in rural areas, where poverty is not uncommon, were particularly hard-hit as a result of border closures and an inability to sell their stock  (Tran et al., 2020).

These economic difficulties are likely to have impacted availability of food, medical care, and other necessary supplies for the elderly population who require informal, unpaid care in Vietnam.

References:

Tran, P. B., Hensing, G., Wingfield, T., Atkins, S., Sidney Annerstedt, K., Kazibwe, J., Tomeny, E., Biermann, O., Thorpe, J., Forse, R., & Lönnroth, K. (2020). Income security during public health emergencies: the COVID-19 poverty trap in Vietnam. BMJ Global Health, 5(6), e002504. https://doi.org/10.1136/BMJGH-2020-002504

Last updated: January 3rd, 2022   Contributors: Daisy Pharoah  |  


Contributors to the LTCcovid Living International Report, so far:

this list is regularly updated to reflect contributions to the report, if you’d like to contribute please email a.comas@lse.ac.uk

Elisa Aguzzoli, Liat Ayalon, David Bell, Shuli Brammli-Greenberg, Erica BreuerJorge Browne Salas, Jenni Burton, William Byrd, Sara CharlesworthAdelina Comas-Herrera, Natasha Curry, Gemma Drou, Stefanie Ettelt, Maria-Aurora Fenech, Thomas Fischer, Nerina Girasol, Chris Hatton, Kerstin HämelNina Hemmings, David Henderson, Kathryn Hinsliff-Smith, Iva Holmerova, Stefania Ilinca, Hongsoo Kim, Margrieta Langins, Shoshana Lauter, Kai Leichsenring, Elizabeth Lemmon, Klara Lorenz-Dant, Lee-Fay Low, Joanna Marczak, Elisabetta Notarnicola, Cian O’DonovanCamille Oung, Disha Patel, Martina Paulikova, Eleonora Perobelli, Daisy Pharoah, Stacey Rand, Tine Rostgaard, Olafur H. Samuelsson, Maximilien Salcher-Konrad, Benjamin Schlaepfer, Cheng Shi, Cassandra Simmons, Andrea E. SchmidtAgnieszka Sowa-Kofta, Wendy Taylor, Thordis Hulda Tomasdottir, Sharona Tsadok-Rosenbluth, Sara Ulla Diez, Lisa van Tol, Patrick Alexander Wachholz, Jae Yoon Yi, Jessica J. Yu

This report has built on previous LTCcovid country reports and is supported by the Social Care COVID-19 Resilience and Recovery project, which is funded by the National Institute for Health Research (NIHR) Policy Research Programme (NIHR202333) and by the International Long-Term Care Policy Network and the Care Policy and Evaluation Centre at the London School of Economics and Political Science. The views expressed in this publication are those of the author(s) and not necessarily those of the funders.