LTCcovid Country Profiles

Responses to 2.05. Impacts of the pandemic on the health and wellbeing of people who use Long-Term Care

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 was compiled and updated voluntarily by experts on LTC all over the world. Members of the Social Care COVID-19 Resilience and Recovery project moderated the entries and edited as needed. It was updated regularly until the end of 2022.

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.  (2022) 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

There is great concern about the detrimental impacts of the pandemic and the measures adopted to prevent COVID-19 infections on people who use long-term care services, particularly those in care homes. This section summarises the evidence we have gathered so far in the studies described in each of the country sections below.

People living in care homes
Types of evidence:

So far we have found some evidence of detrimental impacts for people living in the community, particularly from the UK, see below). Most of the evidence so far is on the impacts on people living in care homes and some evidence for people living in retirement communities.

While there are only a few countries where data on the well-being, mental and physical health were available from before the pandemic, researchers have used both qualitative and quantitative approaches to ask about perceived changes.

With regards comparable data from before the pandemic, this tends to be available in countries that have information systems to collect data regularly, for example the interRAI Long-Term Care Facilities (interRAI LTCF,  a standardised vehicle to record clinical observations that is used in LTC homes more than 30 countries). Papers that have estimated the impacts of the pandemic on care home residents comparing with data from before the pandemic include McArthur et al., 2021, Pereiro et al, 2021, Levere et al., 2021).

Some quantitative studies used questions asking about perception of change, in an effort to address the lack of baseline data to compare against (see for example El Haj et al., 2020).

Most of evidence available is from qualitative studies and, due to the restrictions in place during the pandemic, it is often obtained through proxy reports from family members of staff (see for example, Paananen et al, 2021; Avidor and Ayalon 2022; Giebel et al., 2022, Smaling et al., 2022). Some studies did interview residents (see for example Ickert et al., 2021)

Well-being, mental and physical health outcomes observed

Many studies found that increases in depression, anxiety, and stress were observed in care home residents during the pandemic (Brydon et al., 2021; Guerrero et al., 2021; Levere et al., 2021; Pereiro et al., 2021). Some studies found that this was more pronounced in residents with Alzheimer’s and Dementia (El Haj et al., 2021; Leontjevas et al., 2021; Smaling et al., 2022).

However, there were some studies that found that, despite long periods of confinement, residents had no or mild symptoms of depression, anxiety, and stress and were satisfied with their lives (Arpacioglu et al., 2021; Seethaler et al., 2021; Srifuengfung et al., 2021). A study exploring the views of care home practitioners in the Netherlands about the relationship between changes in stimulation due to the pandemic restrictions and behavioural and psychological symptoms of different groups of residents suggests that residents with advanced dementia and psychotic or agitation symptoms had benefitted from the reduction in unplanned stimuli (such as noise in corridors) during the pandemic, whereas the general reduction in stimuli had affected negatively people without dementia and with depressive and apathetic behaviour (Knippenberg et al., 2022).

In terms physical impacts, a few studies described unintentional weight loss among care home residents (Levere et al. 2021 and Ickert et al., 2021,) general deterioration of physical abilities (Paananen et all, 2021 and Avidor and Ayalon 2021) and increase in episodes of incontinence (Levere et al., 2021). A qualitative study in England of people living with dementia (not in care homes) observed a self-reinforcing vicious circle of deconditioning, highlighting the importance of support to maintain physical activity (Di Lorito et al., 2021)

Some studies reported acceleration in cognitive function (Levere et al., 2021), but not all, Pereiro et al. in a care home in Galicia, Spain, found no change from the expected cognitive decline trajectory that would be expected based on previous data (Pereiro et al., 2021).

A study in Israel interviewed residents in continuing care retirement communities carried out between April and June 2020 found that most of the residents reported substantial reductions in their mental wellbeing, including high levels of anxiety, depression, anger and despair (Ayalon and Avidor, 2021).

Attribution of impacts to particular measures:

It is difficult to assign the impacts observed to particular measures (isolation in confined spaces, lack of family contact, etc), but there is evidence, from before the pandemic, that, in addition to family life being a fundamental human right, visitors provide essential emotional, physical, and psychosocial support to care home residents (Gaugler, 2005; Bethell et al, 2020; Low et al, 2021).

Additionally, staffing shortages, reduced input from some care professionals, and more demands on the time spent on infection prevention and control (IPC) measures are expected to have resulted in a decrease in the amount and quality of care experienced by service users. The mental health of staff was also severely affected (see section 2.08 on impacts of the pandemic on the LTC workforce, and also Brydon et al., 2021).

At least two studies found that detrimental mental health impacts were partially or fully explained by differences in the amount of social isolation experienced (Arpacioglu et al., 2021, Pereiro et al., 2021).

A study focused on changes in behaviour considered challenging among care home residents who have dementia, as reported by nursing home practitioners (Leontjevas et al., 2021), found:

  • – Staff attributed both increased and decreases in these behaviours to the ban in visits in place at the time
  • – The most negative effects were attributed to residents not being allowed to go outside, being made to stay in their rooms and changes in organised activities
  • – People with mild to moderate dementia having been most affected.

 

In another study (Brydon et al, 2021) staff identified the following as potential reasons for high rates of poor mental health for residents:

  • -Visiting and outing restrictions
  • – Media exposure to COVID-19 outbreaks and concern for the safety of family and friends.

Residents in care homes in Alberta (Canada) reported missing recreational activities, loss or recreational activities, lack of services, such as physiotherapy, and the feeling that they were most affected by restrictive measures than the rest of the population (Ickert et al., 2021).

As described above, Knippenberg et al (2022) found that different groups of residents had different responses to the reduction in stimuli produced by the pandemic restrictions, recommending more targeted approaches to the different needs for stimulation of different groups or residents (for example those with severe dementia compared to those without dementia and with depressive symptoms).

People using care in the community

A qualitative study in Italy found that carers of people with dementia reported accelerated decline in cognitive and functional abilities and increased behavioural and psychological symptoms (Chirico et al., 2022).

References:

Arpacioglu S, Yalçin M, Türkmenoglu F, Ünübol B, Çelebi Çakiroglu O. Mental health and factors related to life satisfaction in nursing home and community-dwelling older adults during COVID-19 pandemic in Turkey. Psychogeriatrics. 2021 Nov;21(6):881-891. doi: 10.1111/psyg.12762.

Avidor, S. and Ayalon, L. (2022). “I Didn’t Meet My Mother; I Saw My Mother”: The Challenges Facing Long-Term Care Residents and Their Families in the Age of COVID-19. Journal of Applied Gerontology, 41(1), 22–29. https://doi.org/10.1177/07334648211037099

Ayalon L. and Avidor S., ‘We have become prisoners of our own age’: from a continuing care retirement community to a total institution in the midst of the COVID-19 outbreak, Age and Ageing, Volume 50, Issue 3, May 2021, Pages 664–667, https://doi.org/10.1093/ageing/afab013

Bethell J, Aelick K, Babineau J, et al. Social connection in long-term care homes: A scoping review of published research on the mental health impacts and potential strategies during COVID-19. J Am Med Dir Assoc 2020; https://doi.org/10.1016/j.jamda.2020.11.025

Brydon A, Bhar S, Doyle C, Batchelor F, Lovelock H, Almond H, Mitchell L, Nedeljkovic M, Savvas S, Wuthrich V. National Survey on the Impact of COVID-19 on the Mental Health of Australian Residential Aged Care Residents and Staff. Clin Gerontol. 2021 Oct 11:1-13. doi: 10.1080/07317115.2021.1985671.

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 Italy. Health & Social Care in the Community, 00, 1– 10. https://doi.org/10.1111/hsc.13758

Di Lorito, C., Masud, T., Gladman, J. et al. (2021) Deconditioning in people living with dementia during the COVID-19 pandemic: qualitative study from the Promoting Activity, Independence and Stability in Early Dementia (PrAISED) process evaluation. BMC Geriatr 21, 529. https://doi.org/10.1186/s12877-021-02451-z

El Haj M, Altintas E, Chapelet G, Kapogiannis D, Gallouj K. High depression and anxiety in people with Alzheimer’s disease living in retirement homes during the covid-19 crisis. Psychiatry Res. 2020 Sep;291:113294. doi: 10.1016/j.psychres.2020.113294

Gaugler, J. E. (2005). Family involvement in residential long-term care: A synthesis and critical review. Aging & Mental Health, 9(2), 105-118. doi:10.1080/13607860412331310245

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 residents. Journal of Advanced Nursing, 00, 1– 12. https://doi.org/10.1111/jan.15181

Guerrero Z, Aliev AA, Kondrátová L, Jozefiaková B, Nesázalová N, Sa?áková JG, Winkler P. Mental Health and Quality & Safety of Care in Czech Residential Institutions during the COVID-19 Pandemic: A Mixed-Methods Study. Psychiatr Q. 2021 Dec;92(4):1393-1411. doi: 10.1007/s11126-021-09912-z.

Ickert C., Stefaniuk R., Leask B.A. (2021) Experiences of long-term care and supportive living residents and families during the COVID-19 pandemic: “It’s a lot different for us than it is for the average Joe”. Geriatric Nursing 42(6): 1547-1555 https://doi.org/10.1016/j.gerinurse.2021.10.012

Knippenberg, I.A.H., Leontjevas, R., Nijsten, J.M.H. et al. Stimuli changes and challenging behavior in nursing homes during the COVID-19 pandemic. BMC Geriatr 22, 142 (2022). https://doi.org/10.1186/s12877-022-02824-y

Leontjevas R., Knippenberg I.A.H., Smalbrugge M., et al (2021) Challenging behavior of nursing home residents during COVID-19 measures in the Netherlands, Aging & Mental Health, 25:7, 1314-1319, DOI: 10.1080/13607863.2020.1857695

Levere M., Rowan P., Wysocki A. (2021) The adverse effect of the COVID-19 pandemic on nursing home resident well-being. J Am Med Dir Assoc 2021; https://doi.org/10.1016/j.jamda.2021.03.010

Low L-F, Hinsliff-Smith K, Sinha S, Stall N, Verbeek H, Siette J, Dow B, Backhaus R, Devi R, Spilsbury K, Brown J, Griffiths A, Bergman C, Comas- Herrera A (2021) Safe visiting at care homes during COVID-19: A review of international guidelines and emerging practices during the COVID-19 pandemic. LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE, 19th January 2021.

McArthur C., Saari M., Heckman G.A. et al. (2021) Evaluating the effect of COVID-19 pandemic lockdown on Long-Term Care residents mental health: a data-driven approach in New Brunswick, JAMDA; 22(1): 187–192. doi: 10.1016/j.jamda.2020.10.028

Nair P, Gill JS, Sulaiman AH, Koh OH, Francis B. Mental Health Correlates Among Older Persons Residing in Malaysian Nursing Homes During the COVID-19 Pandemic. Asia Pac J Public Health. 2021 Nov;33(8):940-944. https://doi.org/10.1177/10105395211032094

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.

Pereiro, A.X.; Dosil-Díaz, C.; Mouriz-Corbelle, R.; Pereira-Rodríguez, S.; Nieto-Vieites, A.; Pinazo-Hernandis, S.; Pinazo-Clapés, C.; Facal, D. (2021) Impact of the COVID-19 Lockdown on a Long-Term Care Facility: The Role of Social Contact. Brain Sci. 11, 986. https://doi.org/10.3390/brainsci11080986

Seethaler, M., Just, S., Stotzner, P., Bermpohl, F., & Brandl, E. J. (2021). Psychosocial Impact of COVID-19 Pandemic in Elderly Psychiatric Patients: a Longitudinal Study. The Psychiatric Quarterly. https://doi.org/https://dx.doi.org/10.1007/s11126-021-09917-8

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

Srifuengfung, M., Thana-Udom, K., Ratta-Apha, W., Chulakadabba, S., Sanguanpanich, N., & Viravan, N. (2021). Impact of the COVID-19 pandemic on older adults living in long-term care centers in Thailand, and risk factohttps://doi.org/https:/dx.doi.org/10.1016/j.jad.2021.08.044rs for post-traumatic stress, depression, and anxiety. Journal of Affective Disorders, 295, 353–365. https://dx.doi.org/10.1016/j.jad.2021.08.044

People living with dementia

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: January 2nd, 2022

Levels of depression, anxiety, confusion, loneliness, and suicide risk among aged care home residents have increased since March 2020. Some of this can be attributed to missing family, changed routines, concern about catching the virus, or fear of being isolated in their rooms. In some cases, people living in aged care homes are no longer doing the incidental exercise they were previously doing (source: Aged Care and COVID-19 report). Dementia Australia reported that people living with dementia and the people that care for them, especially family carers, have reported adverse effects of COVID-19 on their physical, cognitive, social, and mental wellbeing.

A national online survey carried out in September and October of 2020 asked 288 senior staff working in residential aged care homes about the impact of COVID-19 on the mental health of residents and staff. The study aimed to identify the perceived impact of the pandemic on mental health, the restrictions and stressors that staff identified as affecting mental health and the views of staff about programmes and resources to support mental health. The study used mixed methods, using qualitative narratives to complement the quantitative findings. It found that the mental health of both residents and staff has been severely affected, with high rates of residents reported to be experiencing poor mental health, increased loneliness, stress and anxiety, increased behaviours considered challenging, and increased thoughts about death and suicide. In terms of the reasons identified for these high rates of poor mental health for residents, staff suggested visiting and outing restrictions, media exposure to COVID-19 outbreaks and concern for the safety of family and friends. Staff identified training in supporting the mental health of residents, on-site and tele-health counselling and having technical support for video conferencing (Brydon et al., 2021).

References:

Brydon A, Bhar S, Doyle C, Batchelor F, Lovelock H, Almond H, Mitchell L, Nedeljkovic M, Savvas S, Wuthrich V. National Survey on the Impact of COVID-19 on the Mental Health of Australian Residential Aged Care Residents and Staff. Clin Gerontol. 2021 Oct 11:1-13. doi: 10.1080/07317115.2021.1985671.

Last updated: January 12th, 2022

A qualitative study by Pfabigan et al., (2022) indicated that older people with light and moderate care needs living alone in Austria had to adjust their activities of daily living as well as other activities such as practising faith or pastimes. However, it was in particular their autonomy that had to be negotiated e.g. those who used to do shopping on their own were no longer able to do so, and had to rely on others such as neighbours. Overall the study found that the management of everyday life and support was challenging for this group of people.

References:

Pfabigan, J., Wosko, P., Pichler, B., Reitinger, E. and Pleschberger, S. (2022) Under reconstruction: the impact of COVID-19 policies on the lives and support networks of older people living alone, 6(1-2): 211–228, International Journal of Care and Caring, DOI: 10.1332/239788221X16308602886127

Last updated: March 4th, 2022

A published article discusses the adoption of restrictive and protective measures to prevent the spread of the virus, aiming to keep older people healthy and mitigate the effects of the pandemic. The conclusion is that the pandemic has increased the many vulnerabilities to which institutionalised older people were already exposed, adding vulnerability to a new disease, such as COVID-19, due to its high lethality and comorbidity, aggravated by the precariousness of long-term Brazilian institutions due to the negligence of public authorities, civil society, the management of the institutions, and the families of the patients.

Reference:

de Araújo, P. O., Freitas, M. Y. G. S., de Santana Carvalho, E. S., Peixoto, T. M., Servo, M. L. S., da Silva Santana, L., … Moura, J. C. V. (2021). Institutionalized elderly: vulnerabilities and strategies to cope with Covid-19 in Brazil. Investigacion y Educacion En Enfermeria, 39(1), 1–11. https://doi.org/10.17533/udea.iee.v39n1e07

Last updated: January 2nd, 2022   Contributors: William Byrd  |  

A study carried out between July and October 2020 interviewed residents in care homes, as well as family members. The residents reported missing recreational activities, the loss of social interaction within the care home (for example meal times), lack of access to physiotherapy. Some residents described loss of weight. In terms of wellbeing, residents commonly described sadness, loneliness, fear and frustration. They also commented on the impact on others, particularly residents with dementia and expressed concern for them as they were not able to make phone calls or understand the reasons for changes in routines. Some residents expressed that they felt that the public health rules were affecting them more than the rest of the population and many were critical of the measures, particularly limits on visits. Residents also felt that more staff were needed and were concerned about the wellbeing of staff and their working conditions (Ickert et al., 2021).

References:

Ickert C., Stefaniuk R., Leask B.A. (2021) Experiences of long-term care and supportive living residents and families during the COVID-19 pandemic: “It’s a lot different for us than it is for the average Joe”. Geriatric Nursing 42(6): 1547-1555 https://doi.org/10.1016/j.gerinurse.2021.10.012

Last updated: January 7th, 2022

A recent survey by Safe Care BC found that many LTC staff had increased psychological fears and anxiety and intention to leave as a result of COVID-19. They felt a psychosocial burden responding to pandemic and had concerns about their personal safety and ability to care for residents (Source: https://news.gov.bc.ca/files/1.25.2021_LTC_COVID-19_Response_Review.pdf).

A report by the office of the Seniors Advocate British Columbia highlights that the use of antipsychotics among LTC residents has increased by 7% during the COVID-19 pandemic and points towards interRAI assessments suggesting ‘unintended weight loss and worsening mood’ among residents.

Last updated: November 6th, 2021

A study in New Brunswick (Canada) used interRAI LTCF data to compare impacts on depression, delirium and behavioural problems in seven LTCFs. It found that, in the period studied (three months of lockdown at the beginning of the pandemic, up to June 2020, during which those homes did not experience outbreaks and had measures in place to mitigate the impacts of lockdown) the initial lockdown period had no negative impact on depression, delirium, or behavioural problems (McArthur et al, 2021).

References:

McArthur C., Saari M., Heckman G.A. et al. (2021) Evaluating the effect of COVID-19 pandemic lockdown on Long-Term Care residents mental health: a data-driven approach in New Brunswick, JAMDA; 22(1): 187–192. doi: 10.1016/j.jamda.2020.10.028

Last updated: March 4th, 2022

A survey of prescriptions for all nursing home residents in Ontario found evidence of increased prescriptions of psychotropic drugs to nursing homes residents between March and September 2020, compared to prescription pre-pandemic. The authors interpret this as likely to be associated with the social isolation experienced by residents due to infection prevention and control measures or decreased capacity for staff to respond to responsive behaviours.

Last updated: November 6th, 2021

A mixed methods study aimed to assess, quantitatively, the mental health of both staff and residents in long-term care facilities (LTCFs), and used qualitative methods to obtain insights into the challenges experiences in dealing with COVID-19 in care homes in the Czech Republic.

Data collection took place in April and May 2020, with a team of evaluators visiting 27 LTCFs, including children’s homes, and interviews were carried out with 378 residents, 443 members of staff and 49 managers. The study found that nearly half of residents met diagnostic criteria for anxiety or poor well-being and nearly 60% for depression. The highest rates of poor well-being were among residents in psychiatric facilities. The data from nursing homes was found to be unreliable due to high levels of cognitive impairment. There was no comparison to rates of poor mental health from before the pandemic, but the study found that COVID-related health worries were associated with poor mental health outcomes (Guerrero et al., 2021).

References:

Guerrero Z, Aliev AA, Kondrátová L, Jozefiaková B, Nesázalová N, Sa?áková JG, Winkler P. Mental Health and Quality & Safety of Care in Czech Residential Institutions during the COVID-19 Pandemic: A Mixed-Methods Study. Psychiatr Q. 2021 Dec;92(4):1393-1411. doi: 10.1007/s11126-021-09912-z.

Last updated: January 12th, 2022

The national research center VIVE has a part of a national evaluation conducted 29 interviews with relatives and users of long-term care. Some relatives note in the VIVE evaluation that the service cancellations may have had a negative impact on the cognitive and physical functional ability, especially among older people with dementia. Of concern has also been the changing members of staff as this may increase the risk of infection. However, the informants in general support the restrictions and saw it as a sad period that would nevertheless pass (Martin et al, 2022).

Regarding the nursing home sector in particular, the lockdowns have left the residents feeling lonely and isolated. Also, users of home care felt that they had to reduce social contact, but they could to some degree continue to see family and friends (Martin et al, 2022).

A survey among among 1.419 members of the Alzheimer’s Society (conducted mid-June 2020; response rate 21,2%) showed that relatives to persons with dementia experienced that these declined in cognitive and physical functional ability (Alzheimerforeningen, 2021).

Reference:

Alzheimerforeningen (2021) Livet under COVID-19. Coronakrisens betydning og konsekvenser for pårørende til per soner med demens sygdom. København: Alzheimerforeningen, https://www.alzheimer.dk/media/f4fjzr4p/livet-under-covid-19-final.pdf

Kjellberg, P.K., Kjellberg, J.; Hirani, J.C., Mikkelsen, M.; Juel, K.; Christensen, J.; Lauritzen, H.H.; Thøstesen, A.; Topholm, E.H.E.; Martin, H.M.; Navne, L.E.; Johansen, M.B. & Bech, M.  (2022) Baggrunden for covid-19-udbrud og -dødsfald på plejecentre og i hjemmeplejen i Danmark i perioden januar 2020 – april 2021. Tværgående analyse og besvarelse af opdraget. København: VIVE. https://www.vive.dk/da/udgivelser/baggrunden-for-covid-19-udbrud-og-doedsfald-paa-plejecentre-og-i-hjemmeplejen-i-danmark-i-perioden-januar-2020-april-2021-17878/

Rostgaard T (2020) The COVID-19 Long-Term Care situation in Denmark. LTCcovid, International Long-Term Care Policy Network, CPEC-LSE, 25 May 2020.

Last updated: May 25th, 2023

A qualitative study conducted during May to December 2020 with family members of residents in nursing homes in different parts of Finland found that family members perceived that distancing measures had aggravated the pre-existing conditions of their relatives. This included sudden progression in cognitive abilities and deterioration in physical abilities. Both family members and residents experienced grief, anxiety and severe stress (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

Both Senate and National Assembly commissions report the impact on wellbeing of the breakdown of care arrangements in the LTC population. There has been significant coverage in the reports, and in media, of the “syndrome de glissement” (slipping away syndrome), due to the depressive effects of isolation on older people, and care homes have been described as transformed from “living spaces” to “medical spaces” (source). The Assembly?report?presents evidence of the impact on physical health due to the breakdown of occupational therapy and physiotherapy support, with considerably higher numbers of older people losing autonomy, and requiring support with walking and other activities of daily living. 

People at home also experienced isolation, especially when living alone, following high levels of staff illness or absence (source).  

A study carried out in the early part of the COVID pandemic investigated the?levels of depression and anxiety of 58 people living in Alzheimer’s Disease in retirement homes. The study sought to identify self-perceived changes in depression and anxiety compared to before the COVID-19 pandemic using questionnaires administered by care staff. It found that participants reported significantly higher depression and anxiety during than before the pandemic. In common to other studies, there were already high levels of depression and anxiety before the pandemic (El Haj et al., 2020). 

References: 

El Haj M, Altintas E, Chapelet G, Kapogiannis D, Gallouj K. High depression and anxiety in people with Alzheimer’s disease living in retirement homes during the covid-19 crisis.?Psychiatry Res. 2020 Sep;291:113294.?doi: 10.1016/j.psychres.2020.113294 

Last updated: October 22nd, 2024   Contributors: Camille Oung  |  Adelina Comas-Herrera  |  Alis Sopadzhiyan  |  

There is no information available so far that systematically measures the impact of COVID-19 on the health and wellbeing of people with LTC needs.

Mental health

However, concerns for people’s mental health are being raised, especially for people living in residential care settings whose social life has been severely disrupted. Even before COVID-19, research has estimated that among those 65 and older living in care homes, 25-45% had depression. It has further been estimated that only 40% of those received a diagnosis and only about half of those with a diagnosis received adequate treatment and support (Zeit online, 2021; Aerzteblatt.,de, 2018).

A study by Seethaler et al (2021) investigated the impact of the COVID-19 pandemic on mental health and perceived psychosocial support for older psychiatric patients. This focused on 32 patients with affective or anxiety disorders aged over 60 years. All participants were current or former patients of the Psychiatric University Hospital of Charité at St. Hedwig Hospital, Berlin, Germany. Telephone interviews were conducted in April/May 2020 (T1) and August 2020 (T2). The psychosocial impact (PSI) of the pandemic and psychopathology were measured and the changes between T1 and T2 were examined. There was a significant positive correlation between general PSI and depression as well as severity of illness. However, neither general PSI not psychopathology changed significantly between T1 and T2. Patients reported an increase in psychosocial support between T1 and T2 and high demand for additional support. Elderly psychiatric patients showed a negative PSI of the pandemic (Seethaler et al., 2021).

References:

Aerzteblatt.,de (2018) Wissenschaftler: Depressionen bei Heimbewohner seltener behandelt.Available at: https://www.aerzteblatt.de/nachrichten/98943/Wissenschaftler-Depression-bei-Heimbewohnern-seltener-behandelt(Accessed 6 February 2022).

Seethaler, M., Just, S., Stotzner, P., Bermpohl, F., & Brandl, E. J. (2021). Psychosocial Impact of COVID-19 Pandemic in Elderly Psychiatric Patients: a Longitudinal Study. The Psychiatric Quarterly. https://doi.org/10.1007/s11126-021-09917-8

Zeit online (2021) Treffs gegen Depressionen in Alters- und Pfelgeheimen. Available at: https://www.zeit.de/amp/news/2021-02/26/treffs-gegen-depressionen-in-alters-und-pflegeheimen (Accessed 6 February 2022).

 

Last updated: February 13th, 2022   Contributors: William Byrd  |  Adelina Comas-Herrera  |  Klara Lorenz-Dant  |  Thomas Fischer  |  Kerstin Hämel  |  

Israel’s Ministry of Health collaborated with JDC-ESHEL, a social policy and research incubator NGO, to provide long-term carers and service users with information and resources on pandemic-related physical and mental wellbeing. Of note was their guide for caregivers of dementia patients, and efforts to combat loneliness amongst older people. The welfare and strengthening of resilience amongst older people during times of lockdown and social isolation have been of primary concern in the national COVID-19 plan for the aging (Magen Avot V’Emahot).

Research conducted in long term care settings has highlighted the negative emotional impact of lockdown on caregivers and older residents. In addition, older residents also experienced deterioration in the health and physical functioning as a result of discontinuation of “unnecessary” medical and social care during the first was of the pandemic in Israel (Avidor & Ayalon, 2021, Ayalon & Avidor, 2021).

Sources:

Avidor, S., and Ayalon, L. (2021). “I Didn’t Meet My Mother; I Saw My Mother”: The Challenges Facing Long-Term Care Residents and Their Families in the Age of COVID-19. Journal of Applied Gerontology. https://doi.org/10.1177/07334648211037099

Ayalon, L. and Avidor, S. (2021) ‘We have become prisoners of our own age’: from a continuing care retirement community to a total institution in the midst of the COVID-19 outbreak, Age and Ageing, Volume 50, Issue 3, May 2021, Pages 664–667, https://doi.org/10.1093/ageing/afab013

Last updated: January 2nd, 2022   Contributors: Shoshana Lauter  |  LIAT AYALON  |  

There is no information available that systematically measures the impact of COVID-19 on the health and wellbeing of people who use Long-Term Care.

A qualitative study asked family carers of people living with dementia in the community about the impacts they perceived on their relatives with dementia. The carers reported acceleration decline of both cognitive and physical abilities, increased behavioural and psychological symptoms and difficulties meeting care needs due to reduction in formal care and support (Chirico et all, 2022).

References:

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 Italy. Health & Social Care in the Community, 00, 1– 10. https://doi.org/10.1111/hsc.13758

Last updated: February 21st, 2022   Contributors: Eleonora Perobelli  |  Elisabetta Notarnicola  |  William Byrd  |  

Closure of day care and community services risks having significant impact on wellbeing (Source: https://onlinelibrary.wiley.com/doi/full/10.1002/jgf2.366 ). There is research into the impact of restrictions on the general population but so far none found on the LTC population.

Last updated: August 2nd, 2021

A survey of 224 older people living in nursing homes in Malaysia during June to August 2020 found that the majority of respondents were severely depressed and one third reported mild to moderate anxiety and very low social support. Having lived in the nursing home for over a year, not having a hobby and low social support were associated with depression. The authors comment that these rates of depression and anxiety are expected to be higher than before the pandemic (Nair et al., 2021).

References:

Nair P, Gill JS, Sulaiman AH, Koh OH, Francis B. Mental Health Correlates Among Older Persons Residing in Malaysian Nursing Homes During the COVID-19 Pandemic. Asia Pac J Public Health. 2021 Nov;33(8):940-944. https://doi.org/10.1177/10105395211032094

Last updated: January 14th, 2022

Impacts on people living with dementia

A qualitative study involving semi-structured interviews with family and professional carers of people with dementia found that, for people with dementia, social distancing measures resulted in a deterioration of physical health and that the impact on emotional state and behaviour depended on the stage of dementia. The authors were not able to establish if the observed cognitive decline was due to the usual disease progression or to under stimulation due to social distancing measures.

The study found that the negative impacts were more pronounced for people living in the community with more severe dementia, and in nursing homes for people with mild to moderate dementia, the authors attributed this to the loss of ability to carry to carry out meaningful activities that provide a sense of purpose (Smaling et al., 2022).

Another study focused on the changes in behaviour considered challenging among care home residents, as reported in a survey of 199 nursing home practitioners. It found that there were reports of both increased and decreased behaviours considered challenging by staff, with a slightly higher proportion of increase. While staff attributed both increased and decreases to the ban in visits in place at the time, the most negative effects were attributed to residents not being allowed to go outside, being made to stay in their rooms and changes in organised activities, with those with mild to moderate dementia having been most affected (Leontjevas et al., 2021). A further analysis of that data explore the views of practitioners on the effects of reductions in stimuli on behaviour. The study distinguished between targeted stimuli (such as planned recreational activities) and unplanned stimuli (for example spontaneous noise in corridors). Practitioners reported that, for residents with advanced dementia and those with psychotic and agitated behaviours reductions in untargueted stimuli were beneficial, as well as the the adjustments made to daily activities. In contrast, for people without dementia and those with depressive and apathetic behaviour the reduction in stimuli was considered to have had negative effects. The study concludes that it is important to adopt approaches more tailored to the needs of individual residents in terms of the right balance between stimuli and tranquility. Practitioners supported the the idea of creating separate environments within care homes with different levels of stimulation for residents with different needs (Knippenberg et al., 2022).

Impact of physical distancing on vulnerable people needing care

A study by de Vries et al. (2022) on the impact of physical distancing on vulnerable people (including people with learning disabilities, mental health problems, older people with care needs living in the community and in residential care, as well as carers) noted a range of experiences,  from relative calmness to loneliness and loss of perspective. For those with small social networks, the loss of  care professionals and informal carers in their daily life during the pandemic meant the loss of a vital part of their social networks. Overall, the loss of social contact for a longer time was linked to low quality of life or motivation for life.

References:

Knippenberg, I.A.H., Leontjevas, R., Nijsten, J.M.H. et al. Stimuli changes and challenging behavior in nursing homes during the COVID-19 pandemic. BMC Geriatr 22, 142 (2022). https://doi.org/10.1186/s12877-022-02824-y

Leontjevas R., Knippenberg I.A.H., Smalbrugge M., et al (2021) Challenging behavior of nursing home residents during COVID-19 measures in the Netherlands, Aging & Mental Health, 25:7, 1314-1319, DOI: 10.1080/13607863.2020.1857695

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

de Vries, D., Pols, A., M’charek, A. and van Weert, J. (2022) The impact of physical distancing on socially vulnerable people needing care during the COVID-19
Pandemic in the Netherlands, 6(1-2): 123–140, International Journal of Care and Caring, DOI: 10.1332/239788221X16216113385146

Last updated: March 4th, 2022

Report indicated that long-term isolation of people in care homes (due to visiting bans) and limiting interpersonal contacts negatively affected well-being and residents’ health, e.g. increase in personal conflict between residents or apathy, the same report indicated that  residents in care facilities faced  problems with the access to medical care.

A qualitative study by Mackowiak et al., (2021), indicated that people with dementia living at home experienced a burden resulting from limited interactions with social contacts. Uncertainty around the pandemic, has increased their perception of loss of control and overall decreased well-being of people with dementia. Moreover, the lack of stimulation that resulted from restrictions accelerated emotional and cognitive decline.

References:

Mackowiak, M.; Senczyszyn, A.; Lion, K.; Trypka, E.; Malecka, M.; Ciulkowicz, M.; Mazurek, J.; Swiderska, R.; Giebel, C.; Gabbay, M.; et al. (2021). 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  |  Agnieszka Sowa-Kofta  |  

A study in a care home in Galicia aimed to measure the decline in cognitive, functional and affective status among 98 older people living in the care home after a period of lockdown during the first wave of the pandemic (July to September 2020) and compared this to previous measures collected at three different time points to determine whether the decline had accelerated. The study also collected data on frequency of social contact.

The study found lower cognitive and functional scores and higher depression scores after the lockdown but these were not different to the decline that would be expected compared to the previous measurements, suggesting that decline had accelerated during the lockdown. Changes in depression scores were strongly associated with mental health and functional measures, suggesting that social contact is a strong protector against adverse effects (Pereiro et al., 2021).

References:

Pereiro, A.X.; Dosil-Díaz, C.; Mouriz-Corbelle, R.; Pereira-Rodríguez, S.; Nieto-Vieites, A.; Pinazo-Hernandis, S.; Pinazo-Clapés, C.; Facal, D. (2021) Impact of the COVID-19 Lockdown on a Long-Term Care Facility: The Role of Social Contact. Brain Sci. 11, 986. https://doi.org/10.3390/brainsci11080986

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

Studies reported negative impact on mental health of care home residents and their families following the visiting restrictions as well as on mental health of older people following government guidance for people over 70 to limit their social contact (Source: https://aldrecentrum.se/wp-content/Governmental-response-to-the-COVID-19-pandemic-in-Long-Term-Care-residences.pdf).

Last updated: November 30th, 2021

A study in Thailand investigated how the COVID-19 pandemic has affected 200 older adults without dementia living at two government long-term care centres. The prevalence of and risk factors for post-traumatic stress, depression, and anxiety were investigated during August 2020 to October 2020.

Most older people reported a moderate or severe impact of the pandemic. The most impacted area was financial due to decreased support form outside the centre. Seventy percent of respondents reported no or mild psychological stress linked to the pandemic. A minority had post-traumatic stress, depression, or anxiety. Having respiratory tract infection symptoms and receiving news via social media was independently associated with these symptoms. Residents also reported impact on health due to having difficulties in seeing doctors and experiencing financial impacts.

References:

Srifuengfung, M., Thana-Udom, K., Ratta-Apha, W., Chulakadabba, S., Sanguanpanich, N., & Viravan, N. (2021). Impact of the COVID-19 pandemic on older adults living in long-term care centers in Thailand, and risk factors for post-traumatic stress, depression, and anxiety. Journal of Affective Disorders, 295, 353–365. https://doi.org/https://dx.doi.org/10.1016/j.jad.2021.08.044

Last updated: January 14th, 2022   Contributors: William Byrd  |  

In Turkey, older people (over 65s) and children under 20 were subject to a strict curfew between March and June 2020 (Akkan, 2020).  A study involving 133 older adults living in nursing homes and in the community carried out in December 2020 using telephone interviews shows that, in spite of long confinements, the majority of older adults reported no or mild depression, anxiety and stress and were slightly satisfied with their lives. However, those aged over 80 and older people living in nursing homes reported worse outcomes. People living in nursing homes reported higher levels of depression and anxiety, higher anxiety about death and lower life satisfaction that people living in the community. People aged 80 or over reported higher depression, anxiety, stress and death anxiety. Older people who met their relatives less frequently were found to have lower life satisfaction and higher depression scores (Arpacioglu S et al., 2021).

References:

Akkan B and Canbazer C (2020) The Long-Term Care response to COVID-19 in Turkey. LTCcovid, International Long-Term Care Policy Network, CPEC-LSE, 10 June 2020.

Arpacioglu S, Yalçin M, Türkmenoglu F, Ünübol B, Çelebi Çakiroglu O. Mental health and factors related to life satisfaction in nursing home and community-dwelling older adults during COVID-19 pandemic in Turkey. Psychogeriatrics. 2021 Nov;21(6):881-891. doi: 10.1111/psyg.12762.

Last updated: January 26th, 2022

Impacts on people living in care homes

A longitudinal qualitative study conducted in October and November 2020 and March 2021 found that family members and staff reported that residents were upset at the lack of visiting and deteriorating mental wellbeing and changes in behaviour. However, there was also an observation by staff that some residents appeared to be more settled without visits and with fewer social activities (Giebel et al., 2022).

Impacts on adults with learning disabilities

UK-wide interviews with approximately 500 adults with learning disabilities across the UK (Flynn et al. 2021) reported that in the four weeks before being interviewed in the summer of 2021: 13% of people said they often/always felt angry or frustrated, 15% often/always felt sad or down, 21% felt often/always worried or anxious, 12% often/always felt lonely with no-one to talk to, and 19% of people said they had a new or worsening health condition. Across all these indicators well-being had improved from previous interviews in winter 2020/21 and spring 2021. In the summer of 2021, 50% of adults with learning disabilities interviewed felt at least a little worried to leave the house – this was at a similar level to the winter of 2020/21, reversing an improvement in spring 2021.

The same project included surveys with approximately 300 family carers and support workers of adults with learning disabilities who could not take part in an interview. In the summer of 2021, family carers and support workers reported that 14% of people were often/always angry or frustrated in the four weeks before the survey, 12% of people were often/always sad or down, 25% of people were often/always worried or anxious, and 28% were reported to have had a new or worsening health condition in the four weeks before the survey.

References:

Flynn, S., Hayden, N., Clarke, L., Caton, S., Hatton, C., Hastings, R. P., Abbott, D., Beyer, S., Bradshaw, J., Gillooly, A., Gore, N., Heslop, P., Jahoda, A., Maguire, R., Marriott, A., Oloidi, E., Paris, A., Mulhall, P., Scior, K., Taggart, L., & Todd, S. (2021). Coronavirus and people with learning disabilities study Wave 3 Results: September 2021 (Full Report). Coventry, UK: University of Warwick. ISBN:978-1-871501-37-7

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 residents. Journal of Advanced Nursing, 00, 1– 12. https://doi.org/10.1111/jan.15181

Last updated: February 21st, 2022   Contributors: Chris Hatton  |  

People living in care homes

Guidance issued by the government on April 2, 2020, said that care homes should advise family and friends not to visit except in exceptional circumstances. There is concern and, increasingly, reported international evidence that some of the measures taken to reduce the risk of COVID-19 infections in care homes, such as closing care homes to visitors (including family members), reduction in social interactions and activities, and needing to isolate have had negative impacts on the wellbeing and mental health of people living in care homes (Comas-Herrera et al, 2020). There are multiple reports warning about the alarming rate of deterioration that people with dementia are experiencing under these isolating conditions and being detached from their families. For instance, a survey conducted by the charity Alzheimer’s Society found that 79% of care homes surveyed reported that the lack of social contact is causing a deterioration in the health and wellbeing of their residents with dementia. A survey of care homes from across England found that by late May and early June, 2020, 85% of managers had detected low mood among residents (Rajan et al, 2020).

People living in the community who use long-term care

There is emerging evidence that reduced use of social support services has had detrimental effects on the quality of life of people affected by dementia and older adults (Giebel et al, 2021).

In a study of community-dwelling adults with dementia and their carers by Rand et al. (2021), it was found that the later stages of COVID-19 restrictions in England (specifically, from reintroduction of the tier systems in 2nd December 2020 until the end of the study in April 2021) were associated with poorer care-related quality of life outcomes when rated by proxy based on the proxy-person perspective (i.e. the proxy respondent’s rating based on their estimate of the person with dementia’s view).

Impacts on adults with intellectual disabilities

UK-wide interviews with approximately 500 adults with intellectual disabilities across the UK reported that in the four weeks before being interviewed in the summer of 2021: 13% of people said they often/always felt angry or frustrated, 15% often/always felt sad or down, 21% felt often/always worried or anxious, 12% often/always felt lonely with no-one to talk to, and 19% of people said they had a new or worsening health condition. Across all these indicators well-being had improved from previous interviews in winter 2020/21 and spring 2021. In the summer of 2021, 50% of adults with intellectual disabilities interviewed felt at least a little worried to leave the house – this was at a similar level to the winter of 2020/21, reversing an improvement in spring 2021.

The same project included surveys with approximately 300 family carers and support workers of adults with intellectual disabilities who could not take part in an interview. In the summer of 2021, family carers and support workers reported that 14% of people were often/always angry or frustrated in the four weeks before the survey, 12% of people were often/always sad or down, 25% of people were often/always worried or anxious, and 28% were reported to have had a new or worsening health condition in the four weeks before the survey.

A study of changes in prescription in two specialist psychiatric services for people with intellectual disabilities in London (urban setting) and Cornwall (rural setting) found that, in the urban setting, there had been an 11% increase in psychotropic prescribing during the lockdown, compared the pre-lockdown period. The authors consider whether the rural setting and fewer restrictions in Cornwall may be mitigated some of the stress linked to lockdown. Another possible explanation for the difference between settings may be the composition of clinical support (psychiatrist in London compared to a multidisciplinary team in Cornwall) (Naqvi et al, 2021).

Impact on people living with dementia

During the early part of the pandemic it was reported that there was evidence of substantial increases in the prescription of anti-psychotics to people with dementia (Howard, 2020). Some of this may have been due to increased need linked to delirium management or palliative care, but it is also likely to be attributable to worsened agitation and distress linked to COVID-19 restrictions (such as people in care homes being confined to their bedrooms, or not being able to receive family visits).

A qualitative study involving people living with dementia, their carers and therapists were interviewed at two time points around May 2020 and July 2020, generating evidence on the causes and effects of deconditioning. The study observed a set-reinforcing vicious cycle among participants: lockdown made the person apathetic, demotivate, socially disengaged, frailer and less confident, which reduced their activity levels, which in turn reinforced the effects of deconditioning. External supporters had an important role in motivating people to keep active and, with appropriate support and infrastructure, some participants could use tele-rehabilitation (Di Lorito, 2021).

References:

Comas-Herrera A, Salcher-Konrad M, Baumbusch J, Farina N, Goodman C, Lorenz-Dant K, Low L-F (2020) Rapid review of the evidence on impacts of visiting policies in care homes during the COVID-19 pandemic. LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE.

Di Lorito, C., Masud, T., Gladman, J. et al. Deconditioning in people living with dementia during the COVID-19 pandemic: qualitative study from the Promoting Activity, Independence and Stability in Early Dementia (PrAISED) process evaluation. BMC Geriatr21, 529 (2021). https://doi.org/10.1186/s12877-021-02451-z

Giebel, C., Cannon, J., Hanna, K., Butchard, S., Eley, R., Gaughan, A., Komuravelli, A., Shenton, J., Callaghan, S., Tetlow, H., Limbert, S., Whittington, R., Rogers, C., Rajagopal, M., Ward, K., Shaw, L., Corcoran, R., Bennett, K., & Gabbay, M. (2020). Impact of COVID-19 related social support service closures on people with dementia and unpaid carers: a qualitative study, 25(7), 1281–1288. DOI:https://doi.org/10.1080/13607863.2020.1822292

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

Howard, R., Burns, A., & Schneider, L. (2020). Antipsychotic prescribing to people with dementia during COVID-19. The Lancet Neurology, 19(11), 892. DOI:https://doi.org/10.1016/S1474-4422(20)30370-7

Naqvi D., Perera B., Mitchell S., Sheehan R. and Shankar R. (2021). COVID-19 pandemic impact on psychotropic prescribing for adults with intellectual disability: an observational study in English specialist community services. BJPsych Open. 8. 10.1192/bjo.2021.1064.

Rajan, S., Comas-Herrera, A. and Mckee, M., 2020. Did the UK Government Really Throw a Protective Ring Around Care Homes in the COVID-19 Pandemic?. Journal of Long-Term Care, (2020), pp.185–195. DOI: http://doi.org/10.31389/jltc.53

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 8th, 2022   Contributors: William Byrd  |  Chris Hatton  |  Stacey Rand  |  

Impact on adults with intellectual disabilities

UK-wide interviews with approximately 500 adults with intellectual disabilities across the UK reported that in the four weeks before being interviewed in the summer of 2021: 13% of people said they often/always felt angry or frustrated, 15% often/always felt sad or down, 21% felt often/always worried or anxious, 12% often/always felt lonely with no-one to talk to, and 19% of people said they had a new or worsening health condition. Across all these indicators well-being had improved from previous interviews in winter 2020/21 and spring 2021. In the summer of 2021, 50% of adults with intellectual disabilities interviewed felt at least a little worried to leave the house – this was at a similar level to the winter of 2020/21, reversing an improvement in spring 2021.

The same project included surveys with approximately 300 family carers and support workers of adults with intellectual disabilities who could not take part in an interview. In the summer of 2021, family carers and support workers reported that 14% of people were often/always angry or frustrated in the four weeks before the survey, 12% of people were often/always sad or down, 25% of people were often/always worried or anxious, and 28% were reported to have had a new or worsening health condition in the four weeks before the survey.

Informal carers

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.

 

Last updated: March 8th, 2022   Contributors: Chris Hatton  |  

Responses to the Health and Sport Committee survey suggested that recipients of care felt an increased sense of loneliness and isolation. Unpaid carers also reported increased feelings of anxiety, depression and mental exhaustion (The Scottish Parliament, 2020).

Impacts on adults with intellectual disabilities

UK-wide interviews with approximately 500 adults with intellectual disabilities across the UK reported that in the four weeks before being interviewed in the summer of 2021: 13% of people said they often/always felt angry or frustrated, 15% often/always felt sad or down, 21% felt often/always worried or anxious, 12% often/always felt lonely with no-one to talk to, and 19% of people said they had a new or worsening health condition. Across all these indicators well-being had improved from previous interviews in winter 2020/21 and spring 2021. In the summer of 2021, 50% of adults with intellectual disabilities interviewed felt at least a little worried to leave the house – this was at a similar level to the winter of 2020/21, reversing an improvement in spring 2021.

The same project included surveys with approximately 300 family carers and support workers of adults with intellectual disabilities who could not take part in an interview. In the summer of 2021, family carers and support workers reported that 14% of people were often/always angry or frustrated in the four weeks before the survey, 12% of people were often/always sad or down, 25% of people were often/always worried or anxious, and 28% were reported to have had a new or worsening health condition in the four weeks before the survey.

Unpaid carers

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.

References:

The Scottish Parliament, (2020). How has Covid-19 impacted on care and support at home in Scotland?

 

Last updated: March 8th, 2022   Contributors: Chris Hatton  |  Jenni Burton  |  David Henderson  |  David Bell  |  Elizabeth Lemmon  |  

A published paper explores the significant and high death toll of COVID-19 on care home residents and social care staff in England and Wales. These mortality figures, alongside differential treatment of residents and staff during the pandemic, are conceptualized as a form of structural abuse. Arguments are made for the inclusion of structural abuse as a separate category of elder abuse. The lack of appropriate personal protective equipment, paucity of guidance, and high mortality rate among care home staff and residents during the pandemic is indicative of social discourses that, when underpinned by ageism, reflect structural elder abuse. If structural elder abuse was to be included in classifications, it would demand a rethink of social and health-care services and the policies and practices associated with them and would reinforce the government message that safeguarding is everyone’s business (Parker, 2021).

Impact on adults with intellectual disabilities

UK-wide interviews with approximately 500 adults with intellectual disabilities across the UK reported that in the four weeks before being interviewed in the summer of 2021: 13% of people said they often/always felt angry or frustrated, 15% often/always felt sad or down, 21% felt often/always worried or anxious, 12% often/always felt lonely with no-one to talk to, and 19% of people said they had a new or worsening health condition. Across all these indicators well-being had improved from previous interviews in winter 2020/21 and spring 2021. In the summer of 2021, 50% of adults with intellectual disabilities interviewed felt at least a little worried to leave the house – this was at a similar level to the winter of 2020/21, reversing an improvement in spring 2021.

The same project included surveys with approximately 300 family carers and support workers of adults with intellectual disabilities who could not take part in an interview. In the summer of 2021, family carers and support workers reported that 14% of people were often/always angry or frustrated in the four weeks before the survey, 12% of people were often/always sad or down, 25% of people were often/always worried or anxious, and 28% were reported to have had a new or worsening health condition in the four weeks before the survey.

Unpaid or informal carers

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.

References: 

Parker, J.(2021), “Structural discrimination and abuse: COVID-19 and people in care homes in England and Wales”, The Journal of Adult Protection, Vol. 23 No. 3, pp. 169-180. https://doi.org/10.1108/JAP-12-2020-0050

Last updated: March 8th, 2022   Contributors: William Byrd  |  Chris Hatton  |  

A study of 224 nursing homes in Connecticut (US) found significant deterioration among residents in a broad range of physical and mental health measures. This study used Minimum Data Set assessments to measure outcomes for nursing home residents between March and July 2020 to compare to outcomes observed in 2017-2019. The study found that nursing home resident outcomes such as depression, unplanned substantial weight loss, episodes of incontinence and cognitive function worsened during that period. Weight loss, which is considered a good indicator for physical deterioration, was greater for residents who had contracted COVID-19. Other outcomes, such as severe pressure ulcers or activities of daily living scores did not show significant changes  (Levere et al., 2021).

References:

Levere M., Rowan P., Wysocki A. (2021) The adverse effect of the COVID-19 pandemic on nursing home resident well-being. J Am Med Dir Assoc 2021; https://doi.org/10.1016/j.jamda.2021.03.010

Last updated: January 10th, 2022

The following section refers to the impact of the pandemic and measures adopted on the health and wellbeing of the elderly population in Vietnam, as there is little information available that is specifically on users of long-term care.

In the Vietnamese government’s response to COVID-19, there were various general policies which applied to all citizens regardless of age. For example, mass communication health messages, medical declarations in which older people were given priority, and covered costs for any testing, treatment, or quarantining. In addition to benefiting from this, older people received further support for the prevention and treatment of COVID-19 and other medical conditions (source: Aging Asia report). For example, the Ministry of Health issued two documents aimed at elderly people: one with additional guidance for COVID-19 prevention for older people living in the community and the other for older people with additional non-communicable diseases (NCDs). Up to three months’ worth of prescription medication was also made available to individuals with NCDs, and the use of telemedicine was promoted (source: Aging Asia report). At home check-ups and treatment by doctors and nurses were also offered to some, although this was generally limited to those in the bigger cities (Tung, 2020).

However, there were also reports of elderly patients with various health conditions being reluctant to visit hospitals when they needed to due to fear of visiting crowded places. Across Vietnam, rates of inpatient care and hospital visits declined by around 30% during the pandemic (original source: DoH HCMC). This meant that healthcare work has often been done by the individual themselves or family members; neither of whom were likely to have the appropriate training or experience. As a result, there were reports of patients suffering from preventable conditions such as strokes and kidney and respiratory failure as a result of not going into hospital (source: Aging Asia report).

Self-reported impact of the pandemic

A recent report documented the self- reported impact of the pandemic on older people, who were categorised into non-disadvantaged and disadvantaged groups. In both groups, a majority felt that they were negatively impacted by the pandemic. The non-disadvantaged group mainly felt impacted socially due to social distancing. The disadvantaged group reported income as their biggest concern. In both groups, very few reported concerns over health: both had strong faith in the local authorities’ response to the pandemic.

References:

Tung, L. T. (2020). Social Responses for Older People in COVID-19 Pandemic: Experience from Vietnam. Journal of Gerontological Social Work, 63, 682–687. https://doi.org/10.1080/01634372.2020.1773596

Last updated: January 2nd, 2022   Contributors: Daisy Pharoah  |  

Contributors to the LTCcovid Living International Report, so far:

Elisa Aguzzoli, Liat Ayalon, David Bell, Shuli Brammli-Greenberg, Erica Breuer, Jorge Browne Salas, Jenni Burton, William Byrd, Sara Charlesworth, Adelina Comas-Herrera, Natasha Curry, Gemma Drou, Stefanie Ettelt, Maria-Aurora Fenech, Thomas Fischer, Nerina Girasol, Chris Hatton, Kerstin Hämel, Nina 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’Donovan, Camille 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. Schmidt, Agnieszka 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.