Marta Szebehely, Professor Emeritus, Stockholm University

May 8, 2020

From the very beginning of the pandemic, Swedish authorities and politicians stressed the importance of protecting older people. However, the frailest old persons – those who live in care homes – were initially not mentioned at all. As in many other countries, the focus was to limit the spread of the infection and to ensure access to health care – especially intensive care. Until very recently, much less attention was paid to the situation in care homes and no national statistics were available until May 6 when the National Board of Health and Welfare published a short report based on an analysis of death certificates and the national register of people who use Long-Term Care (LTC).

Of the 2,075 individuals who had died of COVID-19 until April 28 in Sweden, 1,877 (90 per cent) were 70 years+. The analysis shows that 948 of the COVID-19 deaths in the age group occurred among care home residents (50 per cent of all 70+ who had died in the country). In relation to the number of care home residents, 1 per cent of the residents had died of covid-19 by April 28. (Source)

No information is available on excess deaths in care homes but normally around half of the around 250 individuals who die per day in Sweden live in a care home, and as there was about 25 per cent  excess death in Sweden during the first half of April (see Figure below) there has obviously been excess deaths also in care homes.

(Source)

There is no national information on the number of care homes with infection, but the biggest newspaper in Sweden, Dagens Nyheter, reported a journalistic investigation based on a survey to the regions in Sweden. Of the 21 regions, 15 had responded to the survey.  Altogether, infection was reported in 510 out of 2040 care homes in these 15 regions, corresponding to 25 per cent of Swedish care homes. In the Stockholm Region, two thirds of the region’s long-term care homes had infected residents, compared to 18 per cent in the rest of Sweden (Dagens Nyheter, 20200503). Death rates were not reported.

Since April 14, the Stockholm Region has been reporting both infection and death rates in care homes. According to these statistics on May 7, there  had been altogether 1,888 infected residents in 215 of the 313 long-term care homes and 70 short-term care homes (56 per cent of the long-term and short-term homes combined). Of the care home residents in the region, 704 had died (Source).

No official statistics show death rates in different care homes, but according to media, some care homes have been very seriously affected: media have reported at least three cases where 10 or even 20 per cent of the residents have died of COVID-19, all in the Stockholm area.

Care homes and LTC workforce

Sweden has around 10 million inhabitants. Of the around 2 million 65 years+ in Sweden, 82,000 (4%) live in a care home. There has been a sharp decline in care home coverage: from 20 per cent of the population 80+ in 2000 to 12 per cent in 2019. As a result, care home residents are increasingly older and frailer. The average age of a person moving to a care home is 86 years; 78 per cent of the residents are 80 years or older and around 70 per cent have dementia.  Twenty per cent of those who move to a care home die within six months, and on average, a resident lives 22 months in a care home.

Around 25 per cent of LTC workers (in residential and home based care) are employed by the hour, and one in five care workers in care homes lack formal training. Staffing level is comparatively high, but with fewer registered nurses than in some other countries; on average, there are three care workers (assistant nurses or care aides) and 0.4 RNs per ten residents in a care home (Stranz & Szebehely 2018). 

As in many countries, care workers have arduous working conditions. Physical load injuries are three times more common in LTC than the average in the labour market, occupational disease due to social and organisational causes have increased by over 70 per cent between 2010 and 2014 and female eldercare workers have 50 per cent more sick days than women in the rest of the workforce (ibid.). An inspection of more than 1,000 LTC units (care homes and home care) by the Swedish Work Environment Authority in 2017-2019, found health and safety deviations in almost 90 per cent of the cases (source).

Regular inspections of how the mandatory hygiene routines are followed in health and social care show that compliance with the routines is much lower in LTC than in hospitals. In one third of the situations inspected, there were deviations from the routines, especially among care workers with no or shorter formal training (source).

Measures to prevent COVID-19 infection in care homes

Death is part of the daily life in a care home, and as care home residents are so fragile and sick, it is not surprising that the pandemic hit the population so badly. But would it have been possible to limit the negative consequences with other policies during the pandemic? 

From the beginning of the pandemic, the general recommendations from the Swedish Public Health Authority have been to stay at home if feeling ill (even with very mild symptoms), wash hands carefully, avoid close contact with others and work from home if possible. Persons 70+ have also been told to stay at home as much as possible and avoid shops and public transports. Public gatherings with more than 50 persons are forbidden, and all universities and high schools have changed to distance learning (other schools and preschools have not been closed). Restaurants are open, but are regularly inspected and being closed if not keeping distance between customers.

The responsibility to restrict spreading of any disease in care homes rests with the municipalities together with the regional infection control units (Smittskydd). This local/regional responsibility has been stressed by the Public Health Authority; no national regulation or recommendations for long term care was presented until April 1 when visits by family or friends to care homes were forbidden. Some care homes stopped visitors already when the first COVID-19 death in Sweden was reported (March 11), and the Stockholm Region introduced restrictions on visitors in all care homes in March 18.

There has been a scarcity of PPE and test kits in Sweden in general and in eldercare in particular. Care home residents, home care users and eldercare staff with symptoms have only recently been prioritized for testing. The main recommendation to avoid spreading the virus in long-term care has been to follow the legislation on basic hygiene routines (to wash hands and use sanitizer in all situations involving personal care). 

Facemasks or shields were not regarded as necessary in long-term care. Only very recently (May 7), did the Public Health Authority publish a document that gives some support for the use of mask and shield but still stressing that it is most important to follow the legislation on basic hygiene. The decision whether to use masks and/or shields in a municipality or a specific home is left with the regional infection control units. Further, in the same document, the Authority stressed that the care home managers are responsible to make sure that staff stay at home when sick – even with very mild symptoms; that staff have adequate knowledge and equipment to follow basic hygiene routines, to organize the work so that each worker cares for a limited number of care users/residents (if at all possible divide infected and non-infected residents), and that staff keep distance to each other – again when possible (Source).

We do not know much yet about how the virus got into the homes, neither how it has been spread once inside. According to a survey of care homes in the Stockholm Region, the managers thought that the infection had entered the homes in several ways: by residents returning from hospital, by family visiting (before banning visits) and by staff working infected but without symptoms. Once within the home, most managers reported difficulties to restrict the spread because of the physical layout of the homes, staff shortage due to high levels of sick leave and self-isolation, an increased use of casual staff with less or no formal training and difficulties to follow hygiene routines, lack of PPE, and difficulties stopping residents with dementia and mild symptoms from moving around and meeting other residents  (Source).

Lessons to learn?

Sweden has been comparatively badly hit by the pandemic. While Sweden has used more voluntary measures than many countries, the aim has been the same – to slow down the spreading of the infection and to protect those most at risk. Whether the Swedish strategy will prove comparatively good or bad in a longer perspective is too early to judge. It is also too early to know whether other measures would have reduced the high number of COVID-19 deaths in Swedish care homes.

However, we can be quite certain that the fact that the COVID-19 policy makers in Sweden – as in many countries – initially ignored long-term care is a reflection of the low status of care and care work. It shows that care is an undervalued part of most societies’ welfare services. Care work is an underpaid and heavy work, and sick leave and work injuries are more common than in most jobs. All over the world, care workers, of which the vast majority are women, have increasingly problematic working conditions. Institutional recognition of the skills of care workers is weak, reflecting the gendered undervaluation of care work.

Long-term care in Sweden – again as in many countries – has been affected by financial cutbacks and New Public Management inspired organizational changes. This has had negative consequences for care workers’ working conditions and for their possibilities to meet the increasing needs of care users. Time pressure has increased, care workers are increasingly working under-staffed, and their job autonomy has decreased as well as the time for support from colleagues and managers. Care workers find their jobs increasingly physically and mentally demanding and an increasing proportion want to quit their job (Stranz & Szebehely 2018).

The COVID-19 crisis exposes shortcomings that have been obvious in the care sector for several decades and highlights the need for changes both in the short and longer term. Casual workers must immediately get more permanent employment to avoid the risk of going to work when sick not to lose income. Those who lack formal training or need more knowledge about hygiene routines must receive adequate training and support from healthcare professionals. But this is not enough to prevent a similar tragedy in the future. More public money to the care sector is an obvious prerequisite for improving the quality of work and thus the quality of care. Employment conditions must be improved and work schedules must be laid out so that there is time for recovery. The work must be organised so that continuity is improved and the care workers’ decision latitude is increased, so that the staff has the opportunity to meet the varying needs of older people. Staffing ratios must increase and there must be sufficient time for both the care work and for support from colleagues and managers. More generally speaking: care work needs to be revalued!