COVID‐19 and dementia: experience from six European countries

Abstract The effects of coronavirus disease 2019 (COVID‐19) have been well documented across the world with an appreciation that older people and in particular those with dementia have been disproportionately and negatively affected by the pandemic. This is both in terms of their health outcomes (mortality and morbidity), care decisions made by health systems and the longer‐term effects such as neurological damage. The International Dementia Alliance is a group of dementia specialists from six European countries and this paper is a summary of our experience of the effects of COVID‐19 on our populations. Experience from England, France, Germany, the Netherlands, Spain and Switzerland highlight the differential response from health and social care systems and the measures taken to maximise support for older people and those with dementia. The common themes include recognition of the atypical presentation of COVID‐19 in older people (and those with dementia) need to pay particular attention to the care of people with dementia in care homes; the recognition of the toll that isolation can bring on older people and the complexity of the response by health and social services to minimise the negative impact of the pandemic. Potential new ways of working identified during the pandemic could serve as a positive legacy from the crisis.

People with dementia may have difficulty understanding complex instructions for isolation and hand washing routines and may have difficulties in expressing some of the symptoms of the disease because of the communication difficulties. 3 There is also concern that antipsychotic sedative medication was being given inappropriately to people with dementia who wander and were at risk of either being infected or spreading infection.
There were specific issues about end of life care in dementia recognising that death rates would be high. This was compounded by a ban on visitors to care homes (later relaxed to allow one visitor in) and there was publicity about emotional scenes of relatives of people with dementia kissing residents through windows because they were unable to be with them. At the time of writing (December 2020), a pilot study is underway to give a COVID test to care home visitors with the results back in 30 min, allowing the visit to go ahead if the test is negative. The number of people attending funerals was also restricted.
Advice has been amply published to support people with dementia as to how survive self-isolation. 5 Services have been negatively impacted with much of the support in the community now being provided remotely. An army of National Health Service supporters (750,000 volunteered) was mobilised to support people at home including providing food to those who were isolated. The issue of remote working in memory clinics has been discussed and the prospect of being able to interview and assess patients, carry out neuropsychological tests and share diagnoses over the telephone or video conferencing.
Personal experience in the epidemic confirmed that many services continued working, and that people looked at innovative ways of maintaining activity. 5 Interviewing and supporting people on the telephone was generally successful and many older people and their families fully appreciated the need for remote as opposed to face-to-face consultation. Indeed, families themselves did not wish to come to hospital for appointments where that could be avoided.

| FRANCE
There are an estimated 900,000 people with dementia in France, the majority of whom are over age 65. In people over 75, two in three residents of institutions have cognitive disorders. 57% of nursing home resident and 70% of long-term geriatric hospital unit residents suffer from moderate to severe cognitive impairment.
� The French health authorities from the start of the confinement period (which ran from 17 March 2020 to 11 May 2020) and, in particular, why family gatherings were prohibited.
� On 29 May 2020, the statistics indicate 6 that 28,714 people had died of COVID; 19% and 49% of whom were in nursing homes and in medico social establishments (MSEs).
� Specific monitoring for COVID-19 has been put in place in nursing home and other types of MSE.
The French Society of Geriatric and Gerontology 7 underlines that these institutions have difficulties in changing practice because the lack of nursing staff increased the risk of cross transmission.
In parallel to the national statistics and to the global perspective it is also interesting to note that the situations can be very different locally. In fact, this period was an opportunity to use existing resources in a different way, to stimulate fraternity and inventiveness. The following examples come from health facilities in the Southern region but are representative of what has also been achieved in other French regions. This has led to the use of strategies and technologies that have just emerged from research by adapting them to promote the quality of life of patients and families.
The Alzheimer nursing home of the Claude Pompidou Institute in Nice experienced no deaths during this period. The management had, from the beginning of the crisis, asked the nursing staff to no longer work for another establishment by offering financial bonus and suitable conditions for their travel and the care of their children.
Psychological aspects highlighted by the crisis should not be overlooked on the patient side of course but also on the family side. From 11 May 2020, the nursing home reopened to the public and family can again but in a supervised manner and with strict barrier measures visit their parents. Before this date, the situation of not being able to meet was a stress factor. The families were both in the situation of losing a loved one and seeking information on the health of that loved one in a place considered to be at high risk. This lead to the promotion of intervention programs targeting the stress response that can be delivered in accessible way. New technologies may have contributed to making this period more acceptable.
There has been a proliferation on the websites of counselling or proposing therapeutic interventions. There was of course the use of telephone calls, video calls allowing an individual relationship. There was also the use of video conference services dedicated to a specific nursing home for families which could both obtain personalised information on their loved one but also share their experience with other families. Finally, certain technological tools usually used for the assessment were modified for interventions in order to provide 'tailor-made' approach and activities depending on individual interests and capacities. During this period clinical practice have informed and modulated the theoretical frameworks. That could be useful for the future.

| GERMANY
Germany has about 1.7 million people with dementia, the majority of   The registration of infected and deceased persons is carried out centrally via the local health authorities by the Berlin-based Robert Koch Institute The Institute publishes daily reports and created a dashboard on which the latest changes can be read. 8 Despite a successful increase in testing capacity, the recommendations remained that only symptomatic patients should be tested.
Overall, the course of the pandemic has been well managed. so far. By November 2020, over 900,000 corona infections were confirmed. Of these, about 14,000 people have died (4.7 %). Fears that the healthcare system might be overburdened did not materialise. With over 30,000 intensive care places with ventilation in Germany, only a fraction was needed for corona patients. By end of November 2020, a total of 28,800 patients had completed intensive care treatment of whom 23 % died. The mortality rate was particularly high in the over-70 age group. These people made up 86 % of the deceased, the median being 82 years, that is the age of average life expectancy. Since May 2020, there has been a stable trend of decrease of mortality among people over 80 years of age.
In its statistics, the Robert Koch Institute included nursing homes together with institutions for asylum seekers and prisons. There were no separate statistics for nursing homes for the elderly. At the end of November 2020, 4700 people had died in these institutions, which is more than a third of all those who died in the context of COVID-19 in Germany. It was also recorded that the people working in these institutions were particularly affected with 49 deaths.
The restrictions on visits to nursing homes were regulated differently from one federal state to another and mostly were also made dependent on the decisions of the owners and managers of nursing homes. These often avoided the slightest risk of infection and were very reluctant to implement relaxation regulations. As a result, residents of care facilities or even dementia residential groups were no longer allowed to leave the house or even their rooms. In some cases, they were also only allowed to eat in their rooms. Access by relatives was either not allowed, or allowed only to a very limited extent. The family members were made aware of the electronic possibilities, for example video telephony. This caused displeasure because all infections that occurred in nursing homes were demonstrably brought in by the staff. The repeatedly demanded regular (serial) testing of nursing home staff has not been implemented to date. For fear of infection, not only the dementia patients but also other residents of the facilities were frequently not allowed outside.
The German Alzheimer's Society produced an information leaflet, in which it advised relatives to draw up an emergency plan in case they fall ill themselves. They were also advised to make use of help of neighbours and of delivery services. Group meetings did not take place, of course, and it is unclear when they will take place again in large numbers. In fact, many people with dementia ultimately died alone because relatives were not allowed to visit them. Meanwhile this situation finds public resonance, for example in the main media. There is an ethical debate, that no one should die alone.  In summary, the high standards of Dutch dementia care we had before the corona crisis are suddenly seriously under pressure and probably significantly deteriorated. This also led to the chair of the Dutch Alzheimer Society publicly questioning this strict isolation policy in mid-April. 12 If we can make the important step of adequate interdisciplinary evaluation and learning of the COVID-19 crises in dementia care, we may be better prepared for next critical disease periods, and we may even improve proportionality in Dutch dementia care in non-COVID care times.

| SPAIN
The COVID-19 pandemic hit hard in Spain. More than seven million individuals in this country are older than 65 years and a quarter of them are octogenarians. It has been estimated that 700,000 individuals aged 40 or more years suffer some kind of dementia. 13 � The first case of the infection by the COVID-19 was diagnosed on 31 January 2020 and by 2 June 2020, 239,932 cases have been diagnosed.
� The pandemic has caused officially 40.461 deaths by November, 2020 deaths, although it is generally believed that that the number is much higher. The mortality rate has been high, and particularly high in residential homes. 14 No problems related to provision of food have been reported.
However, according to officials in Alzheimer's disease family associations the closing of day centres has resulted in serious difficulties for both patients and families.
Telephone interviewing has also been used successfully for supporting persons with dementia and their families and has been valued by many to substitute for face-to-face consultation. In fact, because of the fear of contagion, some families preferred this system rather than going to hospitals for appointments. Technology, homebased interventions used in some projects before this epidemic by some geriatric psychiatrists is now advocated but was implemented only exceptionally.  However, the fear of the population went so far that many people, even those with serious illnesses, no longer visited a hospital for fear of becoming infected there. Even in Summer 2020, the medical facilities are still underused. Medical associations and hospitals report more deaths of other conditions. Outpatient services for the elderly, such as day care and group services, have not been available since mid-March 2020.

| SWITZERLAND
Reporting on the infection rate and mortality rate is done centrally by the Federal Office of Health, which prepares a daily report on the situation. With a sharp increase in the frequency of tests, the largest number of reports of new infections had already been received by the end of March 2020. Since then, the rate of new infections and case numbers has been steadily decreasing. Here it became apparent that the older population was particularly affected.
The median age of hospitalised persons with corona infections was 71 years, 60% of whom were men.
In Switzerland, the severe encroachment on fundamental rights has led to statements of an ethical nature. At the beginning of May, the National Ethics Committee published 'ethical considerations in institutions of long-term care' in the field of human medicine. 19 As a rule, the presence of relatives should at least be permitted as a person is dying. The culture of living wills is widespread in Switzerland but there are no statistics on the number of cases affected by COVID infection could die accordingly. In addition, assisted suicide was also prohibited during the lockdown.
The previous telephone visits to the old people's and nursing homes, and the visits throughout the summer and autumn, showed that dementia patients have clearly suffered from the period of isolation. Many of them experienced restlessness and paranoid symptoms, and the psychotropic drug dose often had to be increased. Some of them received psychotropic medications for the first time.
The situation for dementia patients at home was worse, because-see above-day clinics and groups have not been offered during this time.
However, neighbours helped each other with providing food and intergenerational support developed during this crisis. This was extremely helpful especially for the elderly.
On mid November 2020, finally, the first nursing homes start with regular daily tests of the personal!

| CONCLUSION
Experience across the six European countries represented by the IDEAL group shows, that in spite of individual differences in approach and provision of care, there are common themes in the organisation of services for people with dementia. These include: the early recognition that the presentation of COVID-19 in older people and those with dementia is often atypical; that people with dementia in care homes often face disadvantages in the provision of care; that isolation of people with dementia and their families can result in a significant toll and; that it is important to take measures to develop the response of services and minimise these effects, in harmony with ethical guiding principles. As COVID-19 moves from pandemic to endemic, new ways of working will need to be developed to protect the dignity and quality of life for people with dementia and their families.

CONFLICT OF INTERESTS
Alistair Burns is Assistant Editor of the International Journal of Geriatric Psychiatry.

DATA AVAILABILITY
The data will be available subject to the usual IP regulations from our host institutions and in line with the journals policy.