Report on COVID-19 and Long-Term Care in Italy: lessons learned from an absent crisis management

By Sara Berloto, Elisabetta Notarnicola, Eleonora Perobelli, Andrea Rotolo from the Observatory on Long Term Care, Cergas SDA Bocconi

10th April 2020

The Italian LTC sector at a glance: a structurally weak system

The outbreak of the COVID-19 epidemic in Italy tragically opened the Pandora box over the status of its Long-term care sector (LTC). Italy has been one of the most affected countries in the world, as testified by the numbers of confirmed deaths and positive cases throughout its borders. In this contingency situation, Italy’s demographic pattern appears as particularly critical: 23% of the entire population is over 65 years old (Istat, 2019) – the highest percentage in Europe – which means that almost one-fourth of the country’s entire population is currently the most fragile and exposed to virus lethality. As of April, 2nd in fact, 13,661 of the C COVID-19 related deceased were over 65 years old (94% of the total) (most recent official available data)[1]. Of that 23% over 65 in the total population (that equals 13,882,800 individuals), 2,9 million are estimated to be not self-sufficient and, thus, require either the presence of a care giver or access to LTC services (Berloto et al. 2019).

Even before the crisis, the Italian social and healthcare sector for LTC has been characterized by major weaknesses, due to a strong level of complexity and fragmentation both in terms of competencies and resources among institutional and non-institutional actors, and unheard struggles to enter the policy-makers agenda. This phenomena origin from the fact that LTC sector was not conceived and developed as a comprehensive model, rather from multiple legislative interventions that aimed intermittently at integrating what was already existing (Rotolo, 2014). One single Ministry responsible for LTC is yet to be created: the current LTC governance structure is, at the central level, somewhere in the middle between the Ministry for Labour and Social Policy and the Ministry of Health. Moreover, Regions implement the dual ministerial policies by defining regional policies and network of services; ultimately, local health authorities and municipalities manage services and interventions at the local and individual level. This fragmented situation is further compromised by the insufficient level of coordination that exists among all the actors involved in LTC supply chain: the absence of national awareness and lack of strategic vision inevitably inhibits dialogue, cooperation and joint actions even in non-crisis times.

As concerns the supply of public in-kind services in the country, data show that the total number of slots/beds available in public care homes[2] and day care services in 2016 – latest data available – counted 285.686 units that hosted 297,158 older people. Looking specifically at the care homes segment, it is fundamental to notice how the distribution of nursing homes is diversified and heterogeneous throughout the national territory: in Trentino Alto-Adige Region, there are 25 beds per 100 not-self-sufficient over75 (who represent the share of the population that could most likely access nursing homes); in Basilicata there are 0.65, signalling the almost total absence of services in some areas of the country. As concerns the third pillar of the LTC sector, namely home care, in 2016 779,226 older people benefited from public home care and received 12,467,620 hours of care, meaning almost 16 hours per year per older person. Merging data on the potential target of services (i.e. 2,9 million not self-sufficient elderly) and on the number of users of public services one can find the estimate of the public services LTC coverage rate, which, in 2016, was equal to 37%. Again, in other words, this means that the LTC system is able to respond to one person in need out-of-three. Moreover, considering that most part of the coverage need comes from home care providing on average 16 hours of care per years, it is fair to say that the public welfare system is far from covering and answering the needs of older people who need care and their families.

On top of this, the need coverage rate through public services is not expected to grow anytime soon: the older population in Italy is expected to grow sharply in the near future (+ 5 million by 2037, Istat) and budget constraints are continuously pushing for resources reduction in this sector. The two-thirds of older people who do not make it to the public welfare system seek alternatives to answer their need, there are mainly five possible different answers, which refer to families’ ability to self-organize (Notarnicola and Perobelli, 2018):

  1. Families self-organize to answer their relatives’ LTC needs, assuming both the informal caregiver role and that of care and case manager;
  2. Families access professional private services to filling the gap left by public services;
  3. Families seek responses in other public services through the NHS channel, hoping to find a quick, universal and free response to their needs, especially in case of urgency or of financial constraint; although this answer can only work for a limited span of time (few weeks maximum) and cannot represent a solution;
  4. Families turn to the regular or irregular market of care workers/family assistants, gleaning their incomes or undermining their savings, trying to set up a 24/7 cycle of care (the presence of care workers in Italy is estimated to be equal to 1,005,303 (Berloto and Perobelli, 2019);
  5. Elderly and their families remain alone in facing their need, without activating any alternative response to the public one (for economic reasons, lack of competences etc.).

Given all these premises, one can see how the sector was already under great pressure: the COVID-19 worsened the situation.

What went wrong in the COVID-19 outbreak management

The moment national institutions recognized the COVID-19 pandemic as a serious threat for citizens’ health, public attention has been directed primarily towards what was happening in acute care hospitals. Little attention has been given to care homes, despite being the setting concentrating, as already mentioned, some of the most vulnerable target population for COVID-19. Multiple issues failed to control the spread of the disease, especially in nursing homes, and exacerbated the difficulties of the Italian LTC system.

Issue#1: Poor and delated management guidelines for the LTC sector

In the early phase of the COVID-19 outbreak in February, both national and regional governments did not enact any disposition to guide nursing homes in the crisis management. The first operational guidelines were released after the country’s total lockdown on March, 9th[3], requiring nursing homes to suspend visitations. This implies that fragile elderlies have been exposed for at least three weeks to visitors that could have been positive and asymptomatic with no restriction nor disposition for any kind of social distancing. At the national level, an update of the operational guidelines dedicated to nursing homes was released by The Ministry of Health only on March, 25th, whereas the first measures toward the general population has been enacted the 22nd of February.

Following the national level, most of the Regions (that are responsible for LTC sector regulation) promoted the first guidelines for COVID-19 management over a month after the outbreak: as an example, Region Emilia Romagna on March, 20th, Puglia on March, 25th, Tuscany on March, 29th and Lazio on March, 31st. Lombardy Region was the only one that acted on March 8th, though asking local health authorities (ATS) to identify nursing homes that met “adequate” structural (meaning, having independent pavilions) and organizational requirements to host low intensity COVID-19 positive cases. Such disposition was highly contrasted by both care providers and their representatives due to the high risk that such exposition could represent for both workers and patients and was only poorly enacted.

Such late institutional attention reveals once again that, despite its relevance in terms of share of population at risk, LTC does not represent a priority in the eyes of policy makers. Moreover, it allows the virus to spread in LTC services, determining an incredibly high number of infected elderly and care personnel, together with high mortality.

Issue#2: Delay in the provision of personal protective equipment (PPE) to doctors and care workers in nursing homes

Italy faced an enormous shortage in personal protective equipment (PPE) – masks, tests, gowns – which deeply affected the social and healthcare personnel. New PPE supplies were primarily directed to acute hospitals and nursing homes have been struggling in finding the adequate equipment to protect their workers. As an example, in Lombardy Region, the first supply of masks for nursing homes arrived on March 12th, but proved to be insufficient to cover the actual needs[4]. Hence, workers were dangerously exposed with no adequate protection: many contracted the virus and were forced to home quarantine (in the Bergamo area some estimates talk about 25% of the total workers being sick at home[5]), others chose not to go to work to protect themselves and their families. The combination of no social distancing measures and the lack of PPE for workers dramatically exposed also all the patients to the risk of contracting COVID-19. In a recent report[6] the Istituto Superiore di Sanità (National Institute for Healthcare, ISS hereafter) presented the preliminary results of a survey conducted on 1,634 nursing homes (64% of the total number of nursing homes mapped in the ISS Dementia Observatory) to investigate the COVID-19 spread and management in care structures. As of April, 2nd, 236 nursing homes completed the survey. When asked about the major difficulties encountered in the outbreak management, 86.8% of respondents signalled the lack of PPE, followed by the weak guidelines given to limit the spread of the disease. 12.3% also highlighted the lack of medical supply, 36.2% the absence of care workers and 11.9% the difficulty to (promptly) transfer positive patients in hospitals.

Issue#3: The failure to control the spread of the COVID-19 in nursing homes

In early April, national press shed light on the fact that the death rate registered after the COVID-19 outbreak in nursing homes is well above the average – similarly to what has been happening in Spain (Manzano, 2020). From the first data, it seems that a number of nursing homes located in both in the most affected regions (Lombardy, Veneto and Emilia-Romagna) and in others (for example Marche, Sicily, Trentino Alto-Adige) registered mortality peaks among their patients, also doubling the rate registered in the same month of previous years[7]. Data gathering on the actual number of COVID-19 related deaths is a tough exercise, since the guidelines on the treatment of potential COVID-19 positive patients in nursing homes is the same applied to self-isolated people at home, not requiring hospitalization. The procedure does not require medical staff to test patients (as highlighted above the number of tests is highly insufficient), neither once they are dead after presenting COVID-19-related symptoms[8]. Hence, the government’s daily bulletin presenting official data on deaths due to COVID-19 only covers partially the deaths in nursing homes that might be related to the virus.

To investigate such phenomena, the above-mentioned ISS report captured the deaths trend and the graphs seem to certify such worries. In the February 1st – March 30th timeframe, respondents declared that 9.4% of nursing home patients died, with a 19.2% peak in Lombardy Region. Such number includes both patients that have been tested and certified COVID-19 and those who died presenting symptoms that might be attributed to the virus. In fact, ISS highlights that among the 1,845 total deaths registered in the nursing homes that took part to the survey, only 57 were officially classified as COVID-19 deaths, though 666 had flu and COVID-19-related symptoms. The ISS affirmed that these two numbers should be analysed jointly, considering 723 as the total number of COVID-19 related deaths (39.2% of the total). Data exposed only refers to 236 nursing homes: the aggregate national data on the 4,629 nursing care might reveal harsh numbers and trends.

Moreover, the number of patients that were hospitalized for the period analysed were 796 and 42% of the total had either pneumonia or ill-related symptoms (flu, cough). These data seem to show that most compromised COVID-19 positive cases were treated in nursing homes, without hospitalization. Moreover, 17.1% of care workers were tested positive: we do not have data on the number of workers tested or monitored and it might be the case that the number of workers infected is much higher.

At present, we still do not have enough information to assess whether the deaths registered in this timeframe are above the average mortality rate, but many nursing home managers have underlined that it might be the case[9].

Lessons learned

Given these premises, we suggest that the Italian public administration and other European governments adopt some contingency measures that could prevent the spread of the disease in care homes, with a specific focus on nursing homes:

  • Promote as soon as possible homogeneous operational guidelines to support crisis management in LTC services;
  • Promptly provide nursing homes with PPE to guarantee their safety and that of patients;
  • Provide technical and organizational support to nursing homes to guarantee social distancing;
  • Provide guidelines and clear instruction on how to guarantee quarantine and isolation within nursing homes;
  • Ensure that the personnel is adequately trained to manage the emergency;
  • Ensure that the stock of personnel actively operating in LTC services is adequate and commensurate to the number of patients;
  • Assume coherent and clear decisions toward testing LTC nursing homes personnel and guests for coronavirus, so to have enough information for policy and operational decisions.

Moreover, once this pandemic will be over, policy makers should carefully consider reinforcing the home care sector.  

Bibliography

Berloto S., Fosti G., Longo F., Notarnicola E., Perobelli E., Rotolo A., 2019, La rete dei servizi di LTC e le connessioni con l’ospedale: quali soluzioni per la presa in carico degli anziani non autosufficienti?in (a cura di) CERGAS SDA Bocconi, Rapporto OASI 2019, Egea: Milano.

Berloto S., Notarnicola E., 2019, La prospettiva dei policy makers: quali temi e innovazioni stanno promuovendo le regioni? in (a cura di) Notarnicola E., Fosti G., 2019, Il Futuro del settore LTC: prospettive dai servizi, dai gestori e dalle policy regionali 2° Rapporto Osservatorio Long Term Care, Egea: Milano.

Italian Government, DPCM 14/2020. Disposizioni urgenti per il potenziamento del Servizio sanitario nazionale in relazione all’emergenza COVID-19. https://www.gazzettaufficiale.it/eli/id/2020/03/09/20A01558/sg.

Rotolo, A. 2014, Italia, in: (A cura di) Fosti, G., Notarnicola, E., 2014. il Welfare e la Long Term Care in Europa. Modelli istituzionali e percorsi degli utenti. Egea, Milano. Pp. 93-114.

Manzano, M.A., 2020, COVID19 and long-term care in Spain: impact, underlying problems and initial measures, International Long Term Care Policy Network Online

Notarnicola E., Fosti G., 2018, L’innovazione e il cambiamento nel settore della Long Term Care 1° Rapporto Osservatorio Long Term Care, Egea: Milano.

Perobelli E., Notarnicola E., 2018, Il settore Long Term Care: bisogno, servizi, utenti e risorse tra pubblico e privato, in (a cura di) Notarnicola E., Fosti G., 2018, L’innovazione e il cambiamento nel settore della Long Term Care 1° Rapporto Osservatorio Long Term Care, Egea: Milano.

Links to news articles used for some the information provided in this article (in Italian):

[1]http://www.salute.gov.it/portale/nuovocoronavirus/dettaglioContenutiNuovoCoronavirus.jsp?area=nuovoCoronavirus&id=5351&lingua=italiano&menu=vuoto

[2] In Italy, publicly funded care home sector includes both nursing homes, which provide high intensity healthcare services, and residential homes, which provide housing and social care.

[3] DPCM 14/2020. https://www.gazzettaufficiale.it/eli/id/2020/03/09/20A01558/sg. Disposizioni urgenti per il potenziamento del Servizio sanitario nazionale in relazione all’emergenza COVID-19

[4] https://www.ecodibergamo.it/stories/bergamo-citta/carnevali-arrivate-mascherine-nella-notteaiuto-alle-strutture-andiamo-avanti_1344722_11/

[5] https://www.ilpost.it/2020/03/30/coronavirus-case-di-riposo/

[6] https://www.epicentro.iss.it/coronavirus/pdf/sars-cov-2-survey-rsa-rapporto.pdf

[7] See for example:

[8] https://it.reuters.com/article/idITKBN2161IV

[9] See footnote 4

Suggested citation:

Berloto S, Notarnicola N, Perobelli E, Rotolo A (2020) Report on COVID-19 and Long-Term Care in Italy: lessons learned from an absent crisis management. Article in LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE. Available at https://ltccovid.org/2020/04/10/report-on-covid-19-and-long-term-care-in-italy-lessons-learned-from-an-absent-crisis-management/

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