21 April 2020
By Aida Suarez-Gonzalez1 Adelina Comas-Herrera2
1Dementia Research Centre, UCL Institute of Neurology at Queen Square, University College London.
2 Care Policy and Evaluation Centre, London School of Economics and Political Science
On 31st of January 2020 the first covid-19 case in Spain was confirmed in the Canary Island of La Gomera. On the 24rd of February the first inland cases were identified in Madrid, Cataluña and Valencia. The state of emergency was declared on 14th of March and the country was put under nationwide lockdown. As per today’s date, 204,178 cases have been confirmed in Spain, 21,282 of which resulted in deaths and 67,504 recovered. Almost 70% of cases are among people above 50, 63% of ICU admissions correspond to people between 60 and 79 and patients above 70 account for 86% of total deaths.
Population studies suggest that the prevalence of dementia in people above 65 in Spain is between 4 and 9%, reaching up to 54% among those above 90. 88,6% of people living with dementia in Spain are thought to have severe functional dependency and up to 80% of all people living with dementia live in private homes and may rely on family care.
Spain is divided in 17 autonomous regions with devolved governments. Regional provision of social services is shared between the regional governments and the local authorities or townhalls.
Effects of confinement
Experts have warned about the particular challenges of people with dementia under lockdown (a, b, c) and the media has featured the challenges faced by people living with dementia and their families as a result of confinement measures in Spain (a, b, c). Interruption of previously well-established daily routines, reduction of social interaction, access to support, exercise and pleasant and stimulating activities are among the disruptive changes brought in by the current situation. Disorientation, confusion, exacerbation of behaviours that challenge and neuropsychiatric symptoms (delusions, hallucinations and agitation) emerge as result of these changes. Families also report a significant worsening of cognitive and functional status during the lockdown.
Risk of infection and effects of admission to hospital
The particular vulnerability of people living with dementia during the COVID-19 crisis has been highlighted by experts, however, the Spanish Department of Health, in an official release, listed 7 groups of risk for COVID-19, one of them comprising people above 60, but without specific mention to people living with dementia. Dementia itself does not increase the risk of infection or necessarily compromises the survival in case of infection. However, someone living with dementia may be at higher risk of contracting the virus because of a greater difficulty to stick to safety measures due to their cognitive difficulties. In addition, it is well known that people with dementia who develop infections are likely to develop delirium which complicates hospital management and compromises the future cognitive health of patients. People with dementia experience greater functional loss and less post-discharge functional recovery during hospital care than those without dementia.
Ensuring access to health care including palliative care
Initial guidance from the regional Department of Health in Madrid, the epicentre of the pandemic in Spain, established that people living in care homes with moderate cognitive impairment (as per score in Global Deterioration Scale > 6) and suspect of COVID-19 should not be sent to hospital for care. This guidance was inspired in ICU protocols of triage in situations of catastrophe (for admission to ICU, not to hospital). This guidance was later amended after receiving criticisms from patient associations and the regional Department of Social affairs. Home care directors complained about ambulances not turning out to take very ill residents to hospital and having been left to deal with the outbreak on their own and without resources. We did not find data regarding hospital admission for people with dementia living at home.
Another guidance, this time issued by the Spanish Society of Intensive Care, establishing criteria for admission to ICU, literally stated “any patient with cognitive impairment, either due to dementia or any other degenerative condition, will not be eligible to receive mechanical ventilation”. This protocol does not specify the level of cognitive impairment and in principle it denies mechanical ventilation to all people living with cognitive difficulties regardless the level of severity (e.g. people with mild Alzheimer’s disease, who may have more than a decade of life expectancy ahead of them).
Access to hospital or critical care has not been guaranteed for people living with dementia according to this data.
Measures to support people living with dementia
Spain has been in strict lockdown since 14th March and citizens only allowed out to go to work, getting supplies or medicines. The Spanish Ministry of Health announced exceptions to this rule, one of them applying to people with mental health conditions or disabilities that may experience a worsening of symptoms due to confinement. People living with dementia fall within this exception and are allowed out for ‘therapeutic outings’ as long as there is written proof of this need (medical prescription or medical report indicating the diagnosis).
Some institutions and professional societies, like the Spanish Neurology Society have issued advice and guidelines for families and people living with dementia and some neurology departments launched new online resources to also support their patients with dementia during the pandemic, as the Hospital Universitario Central de Asturias. Neurologists and geriatricians across the country have continued consultations over phone or using telemedicine as common practice. When it comes to people living with dementia in care homes, workers in some specialist dementia care home across the country voluntarily decided to locked themselves in along with the residents, to protect them from infection.
Many local Alzheimer Associations and charities have continued providing support to family carers, mostly by phone or videoconference and the National Alzheimer Association (CEAFA) has launched a section with support resources in their website.
With the closure of day care centres many families of people living with dementia have seen their access to day support suspended. A decree published on 18 March 2020 by the Spanish government establishes that workers able to prove new family care duties derived from the COVID-19 situation (e.g. closure of day care centres) are entitled to request that their working conditions get adjusted or reduced, with proportional adjustments in their salaries. This measure came in place to support people caring for relatives with functional dependency and cognitive impairment and day centres are explicitly named in the decree.
Public home care services have varied in their response to COVID-19, depending on the region and city. For instance, according to media reports, the city of Gijón’s townhall temporarily discontinued their services following a regional law that banned home care services where workers were not wearing Personal Protection Equipment (PPE). In other regions, where public home care services were maintained, users refused them upon fear of infection. In some cities home care services have been reduced to a minimum to reduce risk of infection, while others continue providing care as usual. The lack of PPE among home care workers was a widespread problem.
The dementia post-diagnostic support pathway for people living with dementia and their families is almost non-existent in Spain, in spite of the advocacy from neurologists, geriatricians, nurses, psychologists and patients’ associations for these support services for decades. If these support services had been in place, both patients and families may have been better equipped and supported to face the challenges of confinement. The effort from health and care workers has been notable and has become the most important source of support for people living with dementia in Spain during the crisis, filling a gap left by national and regional administrations.
Note: The information comprised in this report has been gathered from media news and official reports. If you notice any inaccuracy, please report to firstname.lastname@example.org