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This year, the World Summit on the Information Society (WSIS) Forum 2020, the world’s largest annual gathering of the ‘ICT for development’ community, will be held entirely online.

On Wednesday 12 August 2020 from 14:00–15:00 CEST, the WSIS Forum will host a session titled ‘ICTs and Older Persons: Value of the Older Workforce: The Emergence of Senior Entrepreneurship and the Multi-Generational Workplace’. For the first time in history, today’s workplaces are now a meeting place for up to four generations. These multi-generational teams are proving more productive than single-generation teams. Even so, older workers continue to face age discrimination in the workplace, and the conventional 19th century concept and mindset of retirement, remains largely unchanged. Do people really want to retire? How differently are they looking at their lives than their predecessors? And is entrepreneurship an option for today’s retirees?

In the online session, 83-year Han van Doorn will introduce his start-up Are You Okay Today? and share his experiences as a participant in the Start-up Plus program initiated in 2019 by Leyden Academy and Aegon and supported by EIT Health. The other members of the panel discussion are Mike Mansfield (Aegon), Mary J. Cronin (Carroll School of Management, Boston College), and Jeff Schwartz (Deloitte Consulting LLP).

For more information and to register (free of charge), please visit: https://www.itu.int/net4/wsis/forum/2020/Agenda/Session/291

The International Longevity Centre (ILC) Global Alliance is a multinational consortium with a mission to help societies to address longevity and population ageing in positive and productive ways. Leyden Academy represents The Netherlands in this global network.

The ILC Global Alliance is currently working on a systematic overview of the impact of the COVID-19 pandemic in 16 countries, on issues like mortality, policy, societal debate, ageism, social isolation, and abuse. From the perspective of the Netherlands, Professor Tineke Abma and Dr. Elena Bendien have submitted the article ‘Silver lives matter’. It provides context on the Dutch healthcare system, an overview of the course of the pandemic and the response of the Dutch government, and highlights various debates and dilemmas regarding older people that manifested as a result of the COVID-19 pandemic and restrictive measures. In the concluding remarks, the authors argue that the crisis exposed shortcomings in the Dutch systems for healthcare and care for the elderly.

Please read the article ‘Silver lives matter’ below. A link to the earlier ILC Global Alliance position statement regarding COVID-19 and the rights of older persons can be found here.

*****

SILVER LIVES MATTER

How intelligent was the Dutch ‘intelligent lockdown’ for the older Dutch people?

Introduction
The retrospective analysis of the Dutch National Institute for Public Health and Environment (further RIVM) published in June 2020, shows that before the first confirmed COVID-19 diagnosis in the Netherlands on February 27 was made, 154 people had already been infected, with the first complaints traceable as far back as January 1.[1]

Just before the first confirmed diagnosis, the annual Carnival was celebrated in the Southern province of North-Brabant.

During the second COVID-19 related press conference on March 9, the Dutch Prime Minister announced that as of that moment, shaking hands as a form of greeting would be temporarily forbidden. And at the end of that conference he shook hands with the director of RIVM…

The Netherlands anno 2020 is a knowledge society. It has one of the most developed healthcare systems in the world, which is driven by efficiency, market forces, flexible labour and highly specialised care. SMART criteria for setting objectives and a LEAN type of organisation are principles that define most of the Dutch healthcare landscape today.

In 2015 an important transition took place in care for the elderly. Living and care facilities for older people with minor healthcare needs were closed during the following years, due to the high costs which, according to the national statistics office (CBS), were no longer sustainable. The older people were expected to live at home as long as possible. Today, an indication for a care or nursing home is reserved for older people with severe somatic or psychogeriatric problems only. As a result the entire population living in the elderly care facilities today is very frail.

Dutch healthcare and care for the elderly are recurrent themes in the national public debates. The main topics of these debates are the lack of care personnel on the labour market due to flexible contracts, low pay for the personnel, (over)regulation and the protocolisation of care work, which is prioritised over person-centred care, equal access to care for the various population groups etc. This is the context within which the first COVID-19 diagnosis was made public in February 2020. In the meantime, all 2,351[2] Dutch nursing homes accommodating more than 120,000 older inhabitants remained open for visitors, carrying on business as usual, including the homes in the province of North-Brabant.

Statistics
The first confirmed cases of COVID-19 were quickly followed by the first deaths (the first one on March 6). The mortality rate increased exponentially and within several weeks CBS was already speaking about excess mortality. During the first nine weeks of the Corona-pandemics in the Netherlands (weeks 11-19, i.e. March 9 – May 10), excess mortality was estimated at ca. 9,000 cases. This is 32% higher than the expected number of deaths during the same period of time before the pandemics. During the first two weeks, excess mortality increased with 10%, and in the fifth and sixth weeks it was already circa 55%.

Excess mortality was especially high among men between 75 and 90 years old, who lived in care or nursing homes and/or had a migration background. Their mortality rate was 42% higher than could normally be expected (compared with the data from 2017-2019).

The mortality rate among the users of long-term care (WLZ) was 53% higher than normal.[3]

WLZ-zorggebruikers = users of long-term care
Overige bevolking = rest of the population

The most dramatic development took place during the weeks 14 and 15 of 2020 when, according to the CBS figures, the mortality rate in nursing homes and other long-term care facilities had doubled. In the first 10 weeks of 2020 approx. 752 people died weekly in the elderly care institutions. During week 14 the number increased to 1,396 and during week 15 to 1,589 deaths.[4] Around the same time, based on the analysis of electronic dossiers of the clients living in care and nursing homes, approx. 5,300 older inhabitants turned out to be infected by COVID-19. From week 16 on, due to the protective measures introduced at a national level, the mortality rate in the sector for elderly care showed a slow but stable decrease, resulting during week 20 in a level, comparable with the situation before the pandemic.[5]

According to the epidemiological overview of RIVM[6] published on June 5, the Netherlands lost 6,005 people to COVID-19. More than 94% of them were 65 years and older. Approx. 62% of all cases relate to people who were 80 years and older. Approx. 46% of all deaths were inhabitants of care or nursing homes for older people.[7]

Governmental response
The Dutch government reacted to the pandemics by introducing a so called ‘intelligent lockdown’. That decision was made by the Ministerial Crisis Management Committee (the Prime Minister and a number of cabinet ministers) based on advice of the Outbreak Management Team (the director of RIVM, academic researchers and specialists in infectious diseases and virology).[8] The choice for an intelligent lockdown reflects the cultural and political values of the Dutch society, i.e. autonomy, self-regulation, active citizenship and personal responsibility. Intelligent lockdown is a relatively mild protective measure, which regulates public life where this is strictly necessary. E.g. the Dutch lockdown meant temporarily closing all recreational areas and facilities, restaurants, hotels and services where physical contact is involved. An urgent appeal was repeatedly made to all citizens to stay at home in cases when being outside or travelling was not absolutely necessary.

The communication about the spreading of COVID-19 was slow and caused a lot of confusion at the start. At the same time, the communication was frequent and quite transparent. From March 6 till the end of June 2020 the Prime Minister held 36 press-conferences directly related to the pandemic.[9] The governmental approach to the situation invoked serious criticism, especially regarding issues such as group immunity, low testing capacity, the lack of protective equipment and a very late response to the situation in the care sector for the elderly.

In the middle of March, it became necessary to close several care and nursing facilities for external visits in the Southern provinces of North-Brabant and Limburg, due to the increasing number of infected inhabitants.[10]

On March 19 the government, supported by the House of Representatives, took the decision to cancel all personal visits to all care and nursing homes in the Netherlands.[11] In retrospective it was already too late; the virus was spreading quickly among the frailest group of the Dutch population, including their professional staff, who were working without protective equipment there.

In April, when the dramatic numbers of deaths in the care and nursing homes became public, the director of the Catholic and Protestant unions for older people Manon Vanderkaa reacted to the situation by saying: ‘An invisible disaster is going in the nursing homes.’[12] She, as well as other research, clinical and public institutes like ActiZ (the branch organisation of care professionals working with older people, people with chronic diseases and youth), ANBO (the Dutch Union for Senior Citizens) and Verenso (the Dutch Association of Elderly Care Physicians) pleaded for immediate provision of protective equipment for the staff working in care and nursing homes.

Today a vast variety of COVID-19 related resources is available on the websites of various governmental organisations,[13][14][15] including the patients’ organisations.[16]

Front line fighters and a country of volunteers
On March 17 at 8PM the Dutch people applauded from the windows, balconies and roofs of their houses, the care professionals, as a token of appreciation for their devotion and professionalism which they had shown from the very beginning of the pandemics. Retired care professionals and medical students massively applied for voluntary work in various medical facilities.[17] Because of precautionary measures, the majority of the older people stayed at home for weeks. Many initiatives were born in order to help them to survive during this time of uncertainty.[18] The website ‘Coronahelpers’[19] is a good example of how people with questions and those who offered help could be brought in contact with each other.

The work of the IC-nurses and doctors was in the centre of political and public attention from the very beginning of the pandemics. The costs cuts of the previous years in the healthcare sector reflected on the personnel that was available. The required increase in the total number of IC-beds from 1,150 before the crisis, to 1,700 IC-beds during the pandemics, demanded extra capacity from the already overworked hospital nurses and doctors.[20] The fact that the care and nursing home professionals were not only overworked, just like their hospital colleagues, but had to continue working without protective equipment, with their infected clients, resulted in quickly spreading infection among nursing home personnel. Many of them are self-employed, which makes their economic position even more vulnerable in times of crisis.[21] One Dutch study on the prevalence of COVID-19 among the professionals in one of the nursing homes showed 10% of staff having various types of symptoms, a direct result of infection by the virus (Luttje et al., 2020).[22] The care personnel for the elderly never abandoned their duties. However, working in difficult circumstances without fitting protection has led to negative emotions, fear and a feeling of being left in the lurch. In the middle of April, it was announced that at least 8,000 care professionals working in various branches had been infected with COVID-19.[23]

At the end of June 2020, the Minister of Health, Welfare and Sport announced a benefit payment, the so-called corona-bonus, of 1,000 euro for the healthcare professionals.[24] The announcement was followed by a bitter discussion of who’s and how’s in regard to the actual payment. In spite of the good intentions, the actual carrying out of the decision has not been sufficiently thought through. Today the healthcare professionals say aloud: enough applause, it is time for action!

Public debates involving older people in times of Corona
Times of crisis sharpen our focus on issues that actually matter. The pandemic gave a new boost to the debates on gender inequality, equal access to healthcare for all population groups, uncertainty on the labour market for people without a permanent contract or for the self-employed and many other issues. In this short overview we concentrate on several topics related to older people:

(i) Economic versus personal suffering (isolation and loneliness);
(ii) Policies and lessons;
(iii) IC-protocol phase 3: non-medical reasoning for allotment of an IC-bed;
(iv) ‘Dry wood’ and self-determination, or explicit ageism versus internalised ageism.

(i) Economic versus personal suffering (isolation and loneliness)
Further into the pandemics the question about the priorities and choices of the Dutch government during the crisis became more urgent, i.e. to limit economic harm or to prioritise measures relieving personal suffering? Closing businesses had both humanitarian and economic reasons. Firstly, the lockdown was meant to prevent the spreading of the virus and to protect the most vulnerable groups. Secondly, it had also a macro-economic incentive, because uncontrollable spreading of the virus meant an exponential increase in costs and an eventual collapse of the entire healthcare system.

Already on March 17, the government came up with the package of measures in order to support the Dutch economy, including small and medium businesses.[25] ‘The measures’ to relieve the growing loneliness and isolation of the nursing home inhabitants were never discussed at a governmental level.

The debate that is being carried out since then, addresses complex issues. In retrospective some of the choices that have been made, are more susceptible to criticism than others. When the decision about closing businesses had been taken, everybody understood the personal and macro economical risks involved: no clients – no salaries, no orders – no income. When the decision to close the care and nursing homes for visits had been taken, only those directly involved felt the full measure of the consequences. Somebody in frail health can die during a ‘no visitors’-period, not from the virus, but because she or he becomes very lonely or because it is time to die. Dying alone is inhuman; also it can be a traumatic experience for family and friends who were not able to say goodbye properly. On the other hand, closing elderly care facilities for visits, created some space for the care personnel who were exhausted at that point and often also frightened of being infected, of being carriers of the virus and therefore unknowingly infect their families, or of being unable to help their older clients.

In April-May 2020 the Dutch Trimbos-institute for mental health issues investigated whether the inhabitants of nursing homes felt socially isolated during the COVID-19 crisis. The first part of the research was carried out with care professionals working in nursing homes (N=533) and with family members (N=913) of people living in nursing homes. Most of the data came from the two Dutch provinces North-Brabant and Limburg, that had been most seriously afflicted by the virus.[26] Some of the results are:

a. There is a consensus about the necessity to cancel physical visits;
b. Professionals and family members confirm that the feeling of loneliness among the older clients has increased since the ban;
c. Quality of life of the older people is estimated to be lower by both the professionals (from 8 to 6) and the family members (from 7 to 5 on a 10-point scale);
d. Family members find that the general health of their older relative has declined during the pandemics; 44% of professionals share this opinion, 65% of professionals estimate the health of their clients as good or very good;
e. Contact with the older inhabitants is facilitated by various means:

Beeldbellen = video call
Raamcontact = window contact
Buitenruimte = outside

Zorgmedewerkers = care professionals
Familieleden = family members

f. Probably the most important finding regards the question what professionals and family members found to be most important for the older clients: quality of life (‘kwaliteit van leven’) or safety (‘veiligheid’) (the grey area stands for ‘difficult to choose’:

The answers demonstrate one of the complex dilemmas in the care for the elderly during COVID-19: whose wellbeing comes first, the client’s or the professional’s. There are obviously no easy answers here.

(ii) Policies and lessons
In his interview, Professor of Geriatrics Marcel Olde Rikkert (May 2020)[27] critically but constructively evaluated the governmental policies during the pandemics in relation to the health and wellbeing of older people. Several of his points are relevant for this overview:

• The pandemic policies were introduced top-down, the IC-specialists and virologists were mainly advisors of the government, the opinions of other professionals were hardly taken into consideration.
• A lot is known already about ageing processes, but this knowledge has been used sub-optimally during pandemics. E.g. for a long time, fever was seen as an important symptom for COVID-19. However, it is a well-known fact that the normal body temperature of an old person may be up to two degrees lower than that of a young person. An older person with a body temperature of 37 degrees therefore must be tested for COVID-19, which has not been done. As a result, many older people were diagnosed too late, and those working with them were not protected.
• The decision to close care and nursing homes to visits from outsiders was understandable, but required fine-tuning, which has not been done.
• Experience from abroad, e.g. Italy, has not been taken into consideration. The fact that nursing homes could become epicentres, spreading the virus, was known already, but precautionary measures were taken in the Netherlands only after the spreading had already started.
• When it became clear that the Netherlands had to deal with excess mortality, especially among the older population, nothing was done about palliative care, including the possibility to visit dying people in order to say goodbye. ‘Besides quality of life you must look at quality of dying’.
• A large-scale research and a proper dialogue between all parties involved, is necessary to be able to live through the period, that can be better called a time for dialogue than a crisis-time.

(iii) IC-protocol phase 3: non-medical reasoning for allotment of an IC-bed
The underlying question for this debate is the allotment of an IC-place in case of shortage of IC-beds: who will be given priority?

In the beginning of April there were circa 1,400 patients admitted to the IC departments throughout the Netherlands. Each day there were approximately 100 new patients who required an IC-bed. The hospitals in the Netherlands could provide the necessary care to a maximum of 1,900 IC-patients at that point. The Netherlands, given the same rate of incoming patients, had five more days before it would reach its maximum IC-capacity.[28] In that case the doctors had to decide who would be given a priority.

In June 2020 The Royal Medical Association, together with the Federation of Medical Specialists, published the ‘Triage protocol on the basis of non-medical considerations for IC admission during phase 3 of the COVID-19 pandemics.’[29] This is a document that is based on clinical as well as ethical reasoning. Phase 3 means that coordination of a pandemic cannot be carried out any longer at the provincial level and that there is an absolute shortage in capacity, especially in IC- capacity. During the first two steps of phase 3 medical specialists take decisions on medical grounds. Step three addresses the situation where decision-making on medical grounds is not possible anymore. These are several recommendations made for step three, that are relevant for this overview:

• Patients whose stay in the IC-department is estimated to be shorter than that of other patients may be prioritised;
• Care professionals who due to their professional performance had multiple contacts with COVID-19 patients and/ or who, due to the shortage of protective equipment were exposed to the virus, may be prioritised;
• Younger patients have an advantage in relation to older patients, if other factors have not led to the decision (generations are defined as 0-20; 20-40; 40-60; 60-80; 80+). See ‘fair innings’ argument.[30][31]

The choice on the basis of age ignited a new round of public debate about ethics, justice and generational solidarity. In anticipation of the second wave of pandemics the debate is still ongoing. The point about generational choice is explicit and is generating a lot of discussion, while the point about the duration of stay in IC seems to be generally accepted. Yet, also that recommendation implicitly suggests the age-differentiation: a younger patient in good health will very probably recover quicker than an older person.

(iv) ‘Dry wood’ and self-determination, or explicit ageism versus internalised ageism
The Netherlands is not a stranger to ageism and populistic discussions in the times of crisis. At the end of March one of the radio journalists M. Zwagerman[32] came up with a not very original idea about 80+ers who, according to her, generate circa 20% of the healthcare costs, because ‘death has been cancelled’ in the Netherlands. At least two aspects of such prophets in times of uncertainty are problematic. Firstly, such formulations aim to drive a wedge between generations exactly at the moment when solidarity seems to be the best way to go forward. Another aspect is the explicit ageist terminology that cannot be excused either by urgency of the message or by ‘intention to provoke and stimulate a debate’. The older people are called ‘sadly looking grave-diggers’, the virus does its work ‘honestly’ and on top of all that ‘the scythe cuts through the dry wood’. The response to the ‘provocation’ was strong and predominantly critical. Yet, there were also some supporters on Twitter and other social media.

This example is just a tip of the iceberg if we want to take ageism seriously. Zwagerman’s open ageism is easy to criticise, because, while offending older people it is directed at self-promotion. The internalised ageism that the entire society is not aware of, is a much bigger problem. That is why the critical reading of the IC-beds protocol that has been presented earlier is so important.

During the past few months many older Dutch people came to the following conclusion: it is better to stay at home and die in your own bed than to die in a coma in an IC-bed.

The issues of self-determination and autonomy are very important topics in the Dutch public debate. COVID-19 made this topic even more acute.[33] There is however still insufficient transparency in the way the wishes of older people are heard and taken into account.[34] An older person who does not want to be treated any more, can make this decision based on his/her deep conviction that extended treatment will mean extra suffering and additionally entails wasting resources that could be used otherwise. But the same decision can be also made due to an internalised idea that the society does not want or need you anymore, that it is egoistic to prolong your life and that it is your duty to die. Only a thorough critical analysis can help us to separate self-determination from internalised ageism.

Concluding remarks
The events of the last three months have changed our way of looking at ageing and at our future. While we are writing this overview, the Netherlands has eased the lockdown. The visits to (most) care and nursing homes has been carefully resumed for some time already. The homes that were first unwilling to allow visitors were threatened with lawsuits on grounds of violation of human rights.[35][36] At the moment we do not have any factual information about the lawsuits in relation to COVID-19.

During the lockdown there was a lot of attention to domestic violence in the Netherlands.  Our expectations were similar to those of the Canadian colleagues. In June however the Ministry of Health, Welfare and Sport announced that there was no increase in reports on domestic violence during the crisis-period in the Netherlands.[37] The interpretation of the available data must be still carried out.

The crisis exposed shortcomings in the Dutch systems for healthcare and care for the elderly. The labour market which is to a large extent based on flexible contracts, undermines the continuity in all economic sectors, including healthcare and care for the elderly. Quality of life is important for older people living in care or nursing homes, as well as for older people living independently. The COVID-19 measures negatively influenced the lives of many fragile older people.

The Netherlands moves today in the direction of the 1,5 meter-society. What this will mean to the older people remains unclear. The entire process of decision-making during the past few months demonstrated that active participation of older people in our society is far from true. The decisions have been made about them, not with them.[38]

The crisis also brings to light the best in people.

In spite of overwork, lack of protective equipment and personal risks, accompanied by moral dilemmas, the healthcare professionals went on doing their work. A lot of people were inspired by their examples: retired professionals applied for work again, others came to help as volunteers. The cultural sector exploded with creativity: small concerts were organised ‘behind glass’ for clients of nursing homes. I-pads were given as presents to care and nursing homes, in order to allow older people to make video-calls to their families. Small businesses within the communities came up with ideas to deliver fresh meals to community-dwelling older people.

The Dutch organisation for health research and care innovation (ZonMW) made it possible to apply for funding in relation to all aspects of COVID-19 research: clinical, sociological, societal etc. One of the initiatives where Leyden Academy on Vitality and Ageing has been involved from the very beginning together with the GetOud foundation, is the website ‘Wij & Corona’ (‘We and Corona’). The website does what the policies often do not do, i.e. it gives voice to older people themselves. On the website the reader can find dozens wonderful stories told by the older people themselves, about their ideas and experiences in the times of COVID-19.[39]

[1] https://www.rtlnieuws.nl/nieuws/artikel/5140371/corona-cijfers-besmettingen-uitbraak-nederland-eerste-officiele

[2] https://www.zorgkaartnederland.nl/verpleeghuis-en-verzorgingshuis

[3] https://www.cbs.nl/nl-nl/nieuws/2020/22/sterfte-in-coronatijd

[4] https://www.cbs.nl/nl-nl/nieuws/2020/18/sterfte-in-verpleeg-en-verzorgingshuizen-daalt-vertraagd-verder

[5] https://nos.nl/artikel/2332431-cbs-coronasterfte-in-verpleeghuizen-loopt-verder-terug.html

[6] https://www.rivm.nl/sites/default/files/2020-06/COVID-19_WebSite_rapport_dagelijks20200605_1128.pdf

[7] https://www.rtlnieuws.nl/nieuws/artikel/5144186/corona-doden-sterfgevallen-overleden-verpleeghuis-ouderen

[8] https://www.trouw.nl/politiek/wie-zijn-de-coronabeslissers-in-nederland~ba68f198/

[9] https://www.rijksoverheid.nl/onderwerpen/coronavirus-COVID-19/coronavirus-beeld-en-video/videos-persconferenties

[10] https://www.actiz.nl/nieuws/verpleeghuizen-met-besmettingen-sluiten-voor-bezoek

[11] https://www.rijksoverheid.nl/actueel/nieuws/2020/03/19/bezoek-aan-verpleeghuizen-niet-langer-mogelijk-vanwege-corona

[12] https://www.ad.nl/binnenland/sterfte-onder-bewoners-verpleeghuizen-en-instellingen-bijna-verdubbeld~a5c411d2/

[13] https://www.waardigheidentrots.nl/corona/?_ga=2.158024314.1589801308.1592817042-1611282609.1592469165

[14] https://www.verenso.nl/themas-en-projecten/infectieziekten/COVID-19-coronavirus

[15] https://www.rivm.nl/en/novel-coronavirus-COVID-19/risk-groups

[16] https://www.patientenfederatie.nl/zoeken?search=corona

[17] https://www.bnr.nl/nieuws/gezondheid/10406626/2-700-aanmeldingen-voor-corona-hulp-in-noordelijke-ziekenhuizen

[18] https://www.zorgwelzijn.nl/corona-update-heel-nederland-wordt-vrijwilliger/

[19] https://www.coronahelpers.nl

[20] https://www.nrc.nl/nieuws/2020/05/07/1700-ic-bedden-gaat-niet-lukken-a3999095

[21] https://www.socialevraagstukken.nl/hoe-zzpers-in-de-zorg-in-een-moreel-mijnenveld-terechtkwamen/

[22] https://www.verenso.nl/magazine-april-2020/no-2-april-2020/actueel/COVID-19-onder-medewerkers-in-het-verpleeghuis

[23] https://coronavirusactueel.nl/8000-zorgmedewerkers-besmet-met-coronavirus-dit-is-onze-frontlinie-bescherm-hen/

[24] https://nos.nl/artikel/2338942-werkgevers-in-de-zorg-willen-niet-beslissen-wie-wel-of-niet-1000-euro-krijgt.html

[25] https://www.rijksoverheid.nl/actueel/nieuws/2020/03/17/coronavirus-kabinet-neemt-pakket-nieuwe-maatregelen-voor-banen-en-economie

[26] https://www.trimbos.nl/docs/620f571c-0607-4d49-8a8a-3a0ae69c8c5b.pdf

[27] https://www.parool.nl/nederland/kritiek-op-corona-aanpak-ze-hebben-alleen-doden-en-ic-bedden-geteld~b8de9ac0

[28] https://www.trouw.nl/zorg/kiezen-tussen-jongeren-en-ouderen-op-intensive-care-is-onwaarschijnlijk-scenario~b0179886/

[29] https://www.demedischspecialist.nl/sites/default/files/Draaiboek%20Triage%20op%20basis%20van%20niet-medische%20overwegingen%20IC-opnamettvfase%203_COVID19pandemie.pdf

[30] https://www.ceg.nl/ethische-dossiers/rechtvaardige-selectie-bij-een-pandemie/documenten/signalementen/2012/12/13/rechtvaardige-selectie-bij-een-pandemie

[31] Bognar, G. (2015). Fair innings. Bioethics, 29(4), 251-261.

[32] https://www.bnr.nl/podcast/marianne-zwagerman/10406521/doodgewoon

[33] https://www.trouw.nl/nieuws/de-meeste-mensen-willen-thuis-sterven-maar-dat-gebeurt-niet~b323bad0/

[34] https://www.gelderlander.nl/arnhem/oproep-wilt-u-thuis-sterven-of-in-het-ziekenhuis-tussen-de-maanpakken-in-tijden-van-corona~ad64f702/?referrer=https://www.google.nl/ ; https://www.leydenacademy.nl/?s=Laat+ouderen+meepraten

[35] https://www.nrc.nl/nieuws/2020/06/24/na-een-ommetje-heeft-cors-vrouw-weer-wat-kleur-a4004015

[36] https://www.nrc.nl/nieuws/2020/06/24/na-een-ommetje-heeft-cors-vrouw-weer-wat-kleur-a4004015

[37] https://www.huiselijkgeweld.nl/actueel/nieuws/2020/06/24/niet-meer-meldingen-huiselijk-geweld-tijdens-coronacrisis

[38] https://www.scp.nl/publicaties/publicaties/2020/05/18/zicht-op-de-samenleving-in-coronatijd

[39] https://wijencorona.nl ; https://www.leydenacademy.nl/tineke-abma-geef-ouderen-een-stem-in-de-coronamaatregelen/

The limitations that the corona measures entail, cause a change of course in the project ‘Art in elderly care’. Nevertheless, the artists within the various programs and initiatives know how to give an alternative interpretation to their activities. Because especially in this difficult time, the elderly need distraction, inspiration, comfort and contact.

“Before people will need a psychiatrist or a psychologist, give the residents in elderly care organisations some paper, brushes and paint.” – participant of an art initiative

Luckily there are a lot of initiatives, as the webinar with 300 artists and healthcare workers from all over the world showed. All participants are involved in dance, singing, visual education, poetry etc. during these trying corona times. Please find below some inspiring examples of art in times of corona:

• Various examples in the field of music, creative assignments for activities, live demonstrations and creative writing workshops, curated by Irish colleagues.
• An overview of American care art projects during COVID-19, from theatre, singing to dancing.
• Inspiration from English mental health care in times of corona.
• Examples of making music and singing at a safe distance.
• Creative ideas about story telling with the elderly. For example, draw on windows!

By 2025, there are expected to be two billion people aged 65 and older. This offers society both opportunities as well as challenges. For the past 30 years International Longevity Centre (ILC) Global Alliance has been committed to improve the quality of life and well-being of older people around the world. This is urgently needed, as loneliness, poverty and disadvantage among older people is still very common. Especially now with the COVID19 pandemic, which directly affects the elderly in their quality of life. This was the reason for the international webinar ‘A caring world – responding to the impact of the coronavirus on long-term care’ on June 18. Speakers came from the participating ILC countries Argentina, Australia, Canada, Czech Republic, Dominican Republic, England, France, the Netherlands, Singapore, and South Africa.

Singapore prepared because of SARS
In addition to sharing factual data about the numbers of infections and the mortality among the elderly, the various speakers discussed government policy in their countries. ILC Singapore indicated that much had been learned from the SARS epidemic in 2003. Since then, crisis plans, special clinics, and training have been developed so that government and society are much better prepared for a pandemic. To date, there are only 24 deaths in Singapore, 20 of which are elderly. Stringent testing policy, social distancing and good information for the population are important success factors.

Distressing cases in Canada
Brazil and the United States are often cited as countries where governments fail to address the problem adequately, resulting in high mortality rates. But this also seems to be the case in Canada. This very prosperous country reports harrowing cases, especially in the provinces of Ontario and Quebec: many older people are left to their own devices, malnourished and psychologically abused. Meanwhile, the United Nations has drawn attention to the (violation of) human rights of older people in Canada.

Time-honoured problems
All speakers note that the problems that elderly care now faces – such as shortages of protective materials, testing and well-trained care personnel – are manifestations of time-honoured problems in elderly care. Nursing homes all over the world are suffering from staff shortages. Caring for older people and the lack of attention to them reflects our priorities and values. Apparently, we consider hospital care and high-tech medical treatments more important than the loving care and welfare of older people. In all countries there is a lot of excess mortality in the nursing homes, and it is experienced as harrowing that many people with dementia have died.

Age discrimination
Each ILC member country has examples of where the human rights of older people have been violated. These violations and inequalities are related to age discrimination. Ageism – a concept coined by David Butler who founded the ILC Global Alliance – still seems to be the order of the day. The speakers therefore urge a deeper analysis of this theme and to put the human rights of older people on the agenda. There is serious concern that public confidence in the nursing home sector is declining. During this corona crisis, some older people already went from nursing homes to informal care at home. Will this continue when the crisis is over? What does this mean for the informal caregivers? And what is the long-term risk of this development?

Intergenerational solidarity
The good news from the various speakers in the webinar is that there is again a kind of activism perceptible. We also see this in the Netherlands, where senior citizens associations are putting stereotyping images about older people on the agenda. In various countries, it has been reported how resilient the older people are coping with the crisis. They put the crisis in perspective, dose the news and have become digitally skilled. Even people with dementia seem very adaptive, for example in the use of mouth masks. This corrects the stereotypical image of the passive, rigid older person. In the Czech Republic, students intervened by sewing and handing out masks. This activism based on intergenerational solidarity is an achievement that we must cherish. The fight for the human rights of older people could become a global movement.

Social isolation and quality of life
All ILC member countries report an increase in loneliness and social isolation among older people, as a result of social distancing. It will be a major challenge to find a good balance between social isolation for the protection of people and the containment of the pandemic on the one hand, and the preservation of the quality of life and well-being of older people on the other hand. Let us highlight good examples of this from the various countries and learn from them.

From rules to relationships
In response to the crisis, some governments have taken the lead in reforming long-term care, such as in France. And the UK government, who made £ 600 million available for home care of older people. ILC member countries believe that reforms and better preparedness for the next crisis should go beyond training staff in infection control. It is about having enough qualified, stable en resilient personnel, and about improving the public confidence in the sector again. On behalf of ILC Netherlands, professor Tineke Abma from ILC the Netherlands added the following: “Let’s shift our focus from rules and restrictions back to relationships and personal care.”

Click here to watch the ILC Global Alliance webinar ‘A caring world – responding to the impact of the coronavirus on long-term care’.

The ILC Global Alliance (ILC-GA) membership is regionally diverse, and its members in both the Global North and the Global South are united in their concern for the impact of the Covid-19 pandemic on individuals, families and communities. In particular, the Global Alliance (GA) stands in support of the most vulnerable members of society during the pandemic: older persons, persons with underlying morbidities, and members of specific ethnic and socio-economic groups. Above all, the ILC-GA members extend sympathy to all families who have lost a loved one to the virus, typically without an opportunity to bid them farewell.

As a global organisation focused on the self-actualisation and well-being of older persons, the GA’s members:

• denounce ageism, age discrimination, xenophobia and other human rights violations in the management of the pandemic, and the treatment of infected and affected persons;
• eschew social redundancy of the most vulnerable and advocate for their dignity at end of life;
• urge that older persons’ perspectives are taken into account in the design and
• implementation of Covid-19 related measures to ensure they are relevant to and respectful of their lived experiences;
• encourage appropriate physical distancing practices, foster social solidarity through actions of kindness and empathy, and embrace technology and other creative responses;
• call for effective oversight and time limitation on any suspension of civil liberties;
• support the key inter- and intra-governmental bodies to collect, disaggregate and
• disseminate global data on Covid-19;
• support basic and applied sciences leading to optimal testing, treatment and immunization programmes as well as enhanced public health literacy;
• acknowledge the fault lines of social inequalities brought to the fore by the pandemic, and champion their urgent amelioration through both short-term and long-term strategies;
• acknowledge the continuing contribution of older persons to family and community;
• extend gratitude to frontline workers for their selfless commitment in addressing the health, social and economic impact of the pandemic.

Finally, the members view it as of critical importance to support inter-governmental organizations in their continuing effort to provide evidence-based guidelines under the constraints imposed by declining financial resources and geopolitical agendas. The Covid-19 pandemic has shown that the world must stand united, and that rights to technologies helpful to the detection, prevention, control and treatment of the pandemic must be pooled. Such commitment can be the only path to ensure equitable access to health technologies and necessary know-how, which aligns with our principles of equity and belief in a need to develop a framework for global public good at the highest level of the United Nations, including its specialized agencies. To this end we lobby all countries to support the development, approval and implementation of a United Nations Convention on the Rights of Older Persons.

ILC the Netherlands is a member of the International Longevity Center Global Alliance, an international federation of centers for active and healthy aging, and is supported by Leyden Academy on Vitality and Ageing.

Experts dominate the discussion on the corona policy. However, one perspective is missing: that of the people we aim to protect, our most vulnerable, older citizens.

A missing perspective
The idea that we can no longer touch each other, the isolation and the fear of infecting one another remind Merapi (72-year-old) of her childhood years in the leper colony in the Netherlands. Loek (95-year-old) is concerned about his grandchildren: are they not falling behind too much, now that they cannot go to school? As he never caught up with his learning backlog due to his stay in a Japanese internment camp during WWII. We rarely hear these stories from our older citizens. Why does their voice receive so little attention?

In the media coverage on corona, we mainly hear experts such as virologists, epidemiologists and medical specialists. They determine the debate and talk about older people as a risk group. With their claimed objective and factual knowledge, they try to advise politicians to make informed decisions.

Medical hierarchy
Relatively little is known about the corona virus. Why not have philosophers, economists, and communication scientists contribute their insights to better understand the complexity of the corona issue? As complex issues require multiple perspectives. Most attention was paid to the ICs and not to the situation in the nursing homes. The relatively young specialism of geriatric medicine is not ranked high on the medical hierarchy, so as a result, these specialists were consulted quite late in the process. This reflects a hierarchy between specialties in medical science, in which cure is placed above care and prevention. Historically, this can be explained as the health care system has been aimed at healing the sick. Only recently interest has arisen in so-called welfare diseases and their prevention, as well as in long-term care for ageing people. However, these specialties have relatively little influence and input. Recognizing the complexity, we must initiate deliberation and dialogue between the various perspectives in order to gain new insights and possible solutions.

Emic versus etic
In this corona dialogue, the perspective of vulnerable (older) citizens is still lacking. Anthropology calls this the ’emic’ perspective, as opposed to the expert’s ‘etic’ perspective. An ’emic’ perspective is a first-person perspective, of the person who experiences a situation him- or herself. The latter perspective has not been established on the basis of scientific methods. It is grounded in a lived experience, and often it concerns illness and/or old age, possibly accompanied by experiences of exclusion and stigmatization. This ‘experiential knowledge’ is increasingly recognized, but still has a lower status than scientific or practical knowledge. Rather, an older person’s voice is questioned and more easily dismissed as anecdotal and subjective. This applies even more if it concerns someone who is cognitively impaired or suffers from dementia.

Ethical scholar Miranda Fricker describes this injustice as follows: “To be wronged in one’s capacity as a knower, is to be wronged as a human being.”

A problem of all times
Denying the voice of older people is not only a problem in times of corona. The crisis is exacerbating this, the people most affected by the virus do not have a say in the restrictions and measures concerning the virus. In our problem-solving reflex, experts often forget to listen to this priority group. As a result, we are missing out on a wealth of knowledge and insights, and the solutions do not always correspond with older people’s needs and frame of reference. Moreover, for older people with dementia it is extremely difficult to express themselves coherently, and they more often need their loved ones to interpret their needs and desires. In this case we can no longer rely unilaterally on language.

The corona crisis makes the unequal position and limited agency of older people in our society sharply and painfully visible. Measures taken are a repetition and continuation of this pattern. Decisions are made ‘for’ older people and the conversation is ‘about’ the elderly. In the words of 68-year-old Dineke: “All the rules are made up by people who are not old themselves.”

Voices under pressure
It is not without reason that there is protest from family and caregivers about the lockdown of nursing homes. The measures are aimed at reducing risks from a medical perspective, an understandable aim. But meanwhile, values ​​such as relationality and dialogue are under pressure and the lack of personal contact affects the well-being of the residents. It is time for action, let’s look for viable solutions through dialogue and customization. The family should certainly play a role in this.

Also, in the pre-crisis recommendations for people to live independently at home for as long as possible, older people were involved far too little. Many single older citizens are now severely affected by their social isolation. These seniors do not quickly raise their voices. Especially those seniors with a lower social economic status, older people with a migration background, and/or older people who cannot read and write well, like Joke from The Hague: “I hear things on TV that I do not understand, it makes me sick to my stomach.”

Existing imbalances
To conclude: take the perspective of older citizens seriously. Base policy and measures also on their stories and experiences, in an open dialogue and exchange of perspectives between older people and experts, especially in times of great uncertainty and complexity. Let us use this crisis to address the existing imbalances and omissions by engaging older people in decision making. And let us learn from the many beautiful corona initiatives in which the contribution of older people is valued. Such as the Dutch story platform Wij & corona, created by Leyden Academy and GetOud foundation together with older citizens, to give their voice a stage. Like the voices of Merapi, Loek, Dineke and Joke, who have so much to tell us.

Professor Tineke Abma is executive director of Leyden Academy on Vitality and Ageing and professor Participation & Diversity at Amsterdam University Medical Centre

The research project of Leyden Academy focusses on how a diverse group of seniors (aged 60+) experience the virus and the measures taken. How do they perceive the risks and how does is impact their daily lives?

Background
Older people are more susceptible to the corona virus than other age groups in society and are therefore disproportionally affected by the crisis and its measures. The measures taken may have a large impact on their quality of life. Most prominently social distancing, largely applied in all countries may have a large negative influence on their wellbeing, as we know that social relations are of vital influence on quality of life and health at later age (Bowling et al. 2003; Holt-Lunstad et al. 2006). It is expected that the crisis will highlight structural inequalities and unevenly affect those who are already struggling and disadvantaged by society (Fiske, et al 2009). Older people with less resources (socioeconomic, relational or mental) might come even more under pressure during the crisis, both physically and mentally (Hoare, 2015; Perna et al 2012).

The measures taken by governmental bodies intend to protect older people and guarantee their safety. In the Netherlands one such hotly debated measure is the closure of nursing homes for the family and other social contacts. Older people who live in the community are advised to stay at home. The measures and the debate about these measures is steered by experts who talk ‘about’ older people. This pattern is mirrored in the media. Older people themselves are not heard and their insider, ‘emic’, perspective hardly plays a role in policies and the public debate. This leads to a situation wherein many solutions are based upon assumptions about older people without consulting them. As Dineke, an older Dutch person noticed, April 19^th 2020: ‘All these plans are made by younger people.’ (www.wijencorona.nl). As a result many solutions are not tuned-in to the lifeworld of older people and may feel imposed and hard to live by.

Our research project intends to focus on how seniors experience the period during the Covid-19 virus and the measures taken. What are their perspectives on the crisis? How do they perceive the risks? We deliberately pay attention to structural inequalities. Answers will give insight into the perspective of seniors who are now largely invisible in both the academic and public debates. We intend to learn from this crisis and derive lessons from it to better attune measures to seniors’ needs and to explore the resilience of seniors during crises to potentially find avenues of resilience for the future (Bernard, 2006; Bonnano, 2004; Hoare, 2015). Research during a crisis is often impossible. The Covid-19-crisis offers us an unique chance to gain insight in the experiences and individual, perceived, impact of crisis situations and the role of structural inequalities during a crisis, currently largely missing in policy and academic literature (Fiske, et al 2009).

Methods
Aim and research question
This project aims to explore the meaning of the corona crisis among a diverse group of seniors (aged 60+) in the Netherlands, and how the crisis impacts their daily lives. Subgoals include: 1) gaining insight in the role of (structural) inequalities in the experiences of seniors; 2) understanding the resilience of a diverse group of seniors; and 3) an in-depth understanding of the lifeworld of seniors in order to better attune measures to their needs and desires (like communication of measures, coping with measures etc).

Study design
A qualitative study using semi-structured interviews using a constructivist grounded theory approach (Charmaz & Belgrave, 2012).

Study participants
Dutch seniors aged 60+ were purposively recruited via our snowball sampling. To capture a broad range of perspectives, we included a variety of participants with regard to age, sex, income/educational level, ethnicity, marital status, rural/urban living. After a series of interviews we deliberately searched for people with lower incomes, living on their own, because they were underrepresented in the sample. All participants were initially contacted by telephone or e-mail by one of the research members to generally inform them about the study aims. If they were willing to participate, an interview appointment was scheduled.

Data collection
Sixty-five semi-structured interviews were conducted between March 26 2020 and April 24 2020. Four research members were involved in data collection; one senior researcher and three junior researchers. The interviews lasted between 40 and 80 minutes and were, after verbal or written consent, audio-recorded and transcribed verbatim. The interviews were conducted by telephone.

Participants were involved through convenience sampling and snowball sampling techniques. First, we approached seniors known to us (the institute or the individual researchers or others known to them). Second, we asked them for further referral. Third, we send out a call for participants on social media. Fourth, after conducting about 40 interviews and saturation was reached, we looked into which seniors we did not, or only limitedly reached and we started purposively asking around for seniors with specific backgrounds, these were: seniors that lived alone, seniors from lower socio-economic backgrounds and seniors with a migrant background.

The interviews were guided by an interview guide and topic list that was prepared in advance. Initially, available literature on structural inequalities and coping and resilience of seniors was explored. Subsequently, main topics and adequate open-ended interview questions were generated and discussed among the team members. We then discussed the themes with two seniors for specific feedback on this topic list and asked them for further points of interests and/or other comments and remarks. The interviews comprised questions about the daily lives of people during the corona crisis, its overall consequences, perception of risk, its impact on social relations, meaning in life and vitality, coping and resilience, and perceived needs and possibilities to alleviate negative impact. We intend to enhance credibility by passing on the analysis to the participants in order to verify the content and provide the opportunity to comment the interpretation of the researchers (respondent validation) (Barbour, 2001; Frambach et al., 2013). The data collection was finished when we find saturation, that is repetition of findings, but because of the appreciation among seniors for this kind of interviews, we continued data collection with those still volunteering to participate. No incentives were given to the participants.

Data analysis
Data were subject to an inductive thematic analysis (Braun and Clarke, 2006). Analysis software (MAXQDA v 18.0 ) was used to organize codes and text fragments. All interviews were transcribed verbatim after which transcripts were read through and coded using open codes and in-vivo coding. This process comprised thorough reading of the interview transcripts and coding emergent themes (open coding). Throughout the research process, interview experiences and emerging themes were compared and regularly discussed within the team. All team members shared a reflection document to detail their experiences, any methodological or researchers’ experiences which may have influenced data collection. Main themes were related and (sub)categorized (axial coding). We plan to add an additional research expert [TA] for in-depth analyses discussing the meaning and relevance of emergent themes. The research team intends to meet on a regular base to discuss preliminary findings. Differing interpretations will be discussed until consensus is reached about the meaning and relevance of main themes and final codes (selective coding). The backgrounds of all members allows in potential for interpretation of the data from diverse perspectives and helps to prevent individual bias to occur and enhanced the credibility of findings (Frambach et al., 2013).

Ethics
This study was approved by the Medical Ethics Committee of Leiden, the Hague, Delft, The Netherlands. Data were anonymized for privacy and confidentiality reasons, and stored for a maximum of ten years.

References
Barbour, R. (2001). Checklists for improving rigour in qualitative research: a case of the tail wagging the dog? British Medical Journal 322(7294), 1115-1117.

Bernard S.M. (2006). The concept of resilience revisited. In Disasters, Vol30(4):433-450.

Bonanno G.A. (2004). Loss, Trauma, and Human Resilience. Have We Underestimated the Human Capacity to Thrive After Extremely Aversive Events? In American Psychologist, Vol59(1):20-28. DOI: 10.1037/0003-066X.59.1.20.

Braun, V. and Clarke, V. Using thematic analysis in psychology. Qualitative research in psychology 2006;3:77-101.

Charmaz K and Belgrave L (2012) Qualitative interviewing and grounded theory analysis. The SAGE handbook of interview research: The complexity of the craft 2: 347-365.

Fiske A., Wetherell J.L., and Gatz M. (2009). Depression in Older Adults. In Annual Reviews Clinical Psychology, Vol5:363-389. doi:10.1146/annurev.clinpsy.032408.153621.

Frambach JM, van der Vleuten CP and Durning SJ. (2013) AM last page: Quality criteria in qualitative and quantitative research. Academic Medicine 88: 552.

Hoare C. (2015). Resilience in the Elderly. In Journal of Aging Life Care. Fall 2015.

Norris F.H., Friedman M.J., Watson P.J., Byrne C.M., Diaz E., and Kaniasty K. (2002). 60,000 Disaster Victims Speak: Part I. An Emperical Review of the Emperical Literature, 1981-2001. In Psychiatry, Vol65(3):207-303.

Perna L., Mielck A., Lacruz M.E., Emeny R.T., Holle R., Breitfelder A., and Ladwig K.H. (2012). Socioeconomic position, resilience, and health behavior among elderly people. In International Journal of Public Health, Vol57:341-349.

Since the end of March, Leyden Academy and GetOud foundation have been collecting stories of Dutch seniors on the platform Wij & corona. By now, over 130 people have shared how they experience the corona crisis, how their life has changed and how they see the future. The stories provide comfort, entertainment, and guidance.

The Wij & corona platform also attracts attention abroad: nine stories have been translated into Japanese by International Longevity Center (ILC) Japan. “We strongly believe that the project by Leyden Academy is extremely valuable in showing how older adults handle the COVID-19 pandemic,” says Shinichi Ogami of ILC-Japan. They share the stories with Japanese seniors, and also prepare a project in which they interview older Japanese citizens on their experiences during these trying corona times. Hopefully, in time, we can also publish these stories on Wij & corona.

We would like to include the perspective of older people from other countries to the Wij & corona platform. Do you have a personal story to share? Please do not hesitate to send us an email.

In an open letter published in the British Medical Journal on 23 March 2020, an international coalition of academic institutions and civil society organizations urges the World Health Organization (WHO) and its member states to prioritize the needs of older people in its response to the Covid-19 pandemic, given that this age group accounts for the large majority of severe cases and of casualties. The authors demand expert guidance for health workers about how to work with frail older people, for older health workers, and for older people themselves and their families.

The 142 signatories include Michael Hodin, CEO of the Global Coalition on Aging, Ken Bluestone, Head of Policy and Influencing at Age International, Dr Glenda Gray, President and CEO South African Medical Research Council, Professor Jean-Pierre Michel, European Interdisciplinary Council on Aging, Dr Cesar Victora, International Center for Equity in Health, and representatives of the International Longevity Centre (ILC) Global Alliance from the USA, UK, South Africa, Brazil, Romania, Nigeria, Singapore, Australia, India, Japan, and Argentina. Professor Tineke Abma signed the open letter on behalf of Leyden Academy on Vitality and Ageing and ILC The Netherlands.

We sincerely hope this collective action will lead to adjustments in the WHO policy and guidelines, and encourage awareness and a broader discussion on the impact of the Covid-19 pandemic on the most vulnerable groups in our society.

Please read the open letter in BMJ here.