Report: The impact of the COVID-19 pandemic on people living with dementia in UK

Aida Suarez-Gonzalez, Gill Livingston and Adelina Comas Herrera

3rd May 2020

In late January 2020, the first COVID-19 cases in the UK were confirmed in North Yorkshire. By the 1^st of March, the transmission of COVID-19 within the UK had reached England, Northern Ireland, Scotland and Wales. On 23^rd of March, a nationwide lockdown was imposed in the UK and, by the 3^rd May 182,260 cases have been confirmed in the UK, 28,131 of which resulted in death. The majority of COVID-related deaths (around 86%) have been among people aged 65 and over, with 39% of these occurring in the over-85 age group.

A recent report suggests that there around 885,000 people living with dementia in the UK, 85% of whom are living with moderate to severe dementia. 39% of people with dementia over 65 are living in care homes and 61% are living in the community. An estimated 86% of care home residents in England have dementia.

Effects of confinement to home during COVID-19 lockdowns

Living in confinement may present particular challenges for people living with dementia. Interruption of previously well-established daily routines, reduction in social interaction, particularly with recognised and trusted relatives, and access to vital support services may have a negative impact on both the cognitive function and quality of life of people with dementia and their families, who are also experiencing increasing isolation and inability to access respite care (a, b). The Alzheimer’s Society launched an emergency funding appeal to be able to respond better to the thousands of COVID-related calls received since the pandemic started.

For people living with dementia in care homes, measures to prevent and control infection present particular challenges, as residents are no longer able to receive visits, the normal routines are no longer possible, staff will often wear Personal Protection Equipment (PPE) (which makes recognition and communication more difficult), and many permanent staff may be absent as they are self-isolating.  Residents are often asked not to leave their rooms but may not understand why, be restless and so find it hard to stay still and become frightened at being by themselves.

Risk of COVID-19 infection and effects of admission to hospital

There is no evidence that dementia itself increases the risk of COVID-19 infection or necessarily compromises the chances of survival in case of infection (except perhaps in very advanced cases).  COVID-19 symptoms and death rates increase with older age and with pre-existing illnesses such as cardiovascular disease and diabetes. As people who have dementia are more likely to be older and have underlying health conditions, this puts them at higher risk of developing severe complications from COVID-19.  In the UK the proportion of COVID-19 related deaths, at around the peak of deaths, which also specified dementia in the death certificate was 12% for men and 20% for women. As at this time COVID-19 tests were unavailable in homes this is likely to be an underestimate.

Cognitive difficulties experienced by people living with dementia may make reliable implementation of preventative measures more difficult and can potentially increase their risk of contracting the virus. Besides, people with dementia who develop infections are more likely to develop delirium, which complicates hospital management and compromises the future cognitive health of patients. People with dementia experience greater functional loss during hospital stays and are likely to experience worse post-discharge functional recovery than those without dementia.

Risk of becoming infected and dying in care homes

In the UK, as in many other countries that have experienced rapid surges in COVID-19 infections, there have been large numbers of deaths linked to COVID-19 among care home residents. It is not yet clear how many care home residents have died as a direct or indirect result of COVID-19, or how many of them had dementia. The UK does not yet provide data on the number of residents affected, but there is some data on the number of deaths that happened in care homes (some care home residents will have died in hospitals).

Based on the estimate that 86% of people living in care homes in the UK have dementia, and assuming that people in care homes with dementia have the same probability of dying from COVID-19 as residents without dementia, a conservative estimate would be that out of the 3,096 people who the Office for National Statistics estimated that died with COVID-19 in care homes up to the 17^th of April, 2,662 may have had dementia, and out of the 4,343 COVID-19-related deaths reported to the Care Quality Commission between the 10^th and the 24^th of April, 3,735 would have had dementia.

Ensuring access to health care: admissions to hospital and Intensive Care Units

On 3^rd of April it was reported in the media that a document circulated by the local CCG to GP practices and nursing homes in Brighton and Hove stated that many vulnerable people may be refused admission to hospital and directed all homes to check they have resuscitation orders for every resident. Care home managers in the area expressed concerns about residents and families being pressured into signing these forms, e.g. one care home reported having 16 residents out of 26 sign do-not-attempt to- resuscitate (DNAR) forms in one day.  Likewise, care home managers in Greater Manchester complained about care home residents being refused hospital treatment and DNAR orders being issued about residents without consulting with their families. It is unlikely that many of those residents were able to understand and make a judgement about what they were signing because of their cognitive impairment. In these cases where the residents lacked capacity the forms could be used but lacked legitimacy. Care home providers in York also claimed that hospitals were refusing to admit COVID-positive residents. A GP surgery in Wales apologised after sending letters recommending its more vulnerable patients to complete DNAR forms to ensure that emergency services would not be called if they contracted COVID-19.  In addition, care home beds were being blocked booked to free up hospital beds and new residents admitted with unknown COVID-19 status.  When a resident moves into a home with unknown and sometimes asymptomatic COVID-19 they may potentially infect a large number of residents and staff. This reservoir of infection is not only a risk for the residents but may feed back into the community as the staff go home after their shift.

The Alzheimer’s Society echoed similar concerns: ‘Every day our Dementia Connect support line hears from people, friends and families terrified about the impact of coronavirus – people with dementia are being abandoned in care homes. They’re being told they won’t be admitted to hospitals, they’re being asked to sign DNAR orders and being discharged from hospitals to care homes without being tested”.  In an open letter sent by the Alzheimer’s Society and 4 leading charities to health secretary Matt Hancock it also reads, about people living in care homes “they are told they cannot go to hospital, routinely asked to sign DNR orders”.

DNAR orders are intended to be issued to prevent unnecessary suffering derived from resuscitation that will not be of benefit. They may be an appropriate for some older people with dementia and other illnesses. The use of DNAR and whether it would be in someone’s interest to be admitted to hospital should be considered carefully, if possible in advance of the decision needing to be made.  These orders should only be issued after discussions have been held with the persons or if they lack cognitive capacity to consent with their families, a practice incompatible with mass signing.

The struggles of some Intensive Care Units (ICU) to cope with the increasing number of admissions was already reported before the announcement of the lockdown, with some hospitals experiencing a thirteenfold increase in patients before 20^th of March, and testimonies of doctors on the 3^rd April describing how the criteria to access ventilation were becoming so strict that “soon many of our own staff would not meet criteria”. The National Institute for Health and Care Excellence (NICE) published COVID-19 guidelines for critical care in adults along with a critical care referral algorithm.  For people over 65, this algorithm recommends the use of a Clinical Frailty Scale (CFS) score. Individuals obtaining a CFS score ³ 5 are classified as frail and, according to the guidelines, “there is uncertainty regarding the likely benefit of critical care organ support”. In principle, all people with dementia would be immediately included in this frail group (including people with mild Alzheimer’s disease, who may have more than a decade of life expectancy ahead of them). Although NICE establishes that this CFS score is part of an holistic evaluation, it is unclear how this algorithm would be used when resources are too scarce and doctors have to face life-death decision. This led Alzheimer’s Society to make a call for the NICE to clarify how clinicians will judge a ‘positive outcome’ for people with dementia when making clinical decisions for admission to ICU and assurance that the use of the CFS will not disadvantage people with dementia with regards access critical care at a time of limited resource. The Lewy body Society also sent a letter to the Health Secretary expressing their concerns about people with dementia with Lewy body being at disadvantage if current CFS is used on them. Access to hospital or critical care has not been guaranteed for people living with dementia in the UK.

Measures to support people living with dementia

Clinics by phone or videoconference

Specialised clinics and liaison with specialist for acute hospitals and care homes for people living with dementia continue over the phone or by videoconference. For those at very high risk because of symptoms of the dementia, specialist staff may visit wearing PPE.

Measures to support people with dementia in hospital

NHS England published guidance banning hospital visits to prevent the spread of the virus. However, people living with dementia were included under the list of exceptional circumstances where one visitor would be permitted to visit.

Measures to support people with concerns about the lockdown measures or COVID-19

The third sector is a point of reference of support for people with dementia in the UK. The NHS website signposts people with dementia concerned about COVID-19 and the lockdown measures to the pages of the leading dementia charities Alzheimer’s Society and Dementia UK for advice. Both organisations launched COVID-19 sections in their websites early on and continued their support services through the lockdown. Rare Dementia Support, a UCL-led charity aimed at providing support to people with less prevalent forms of dementia also launched a COVID-19 emergency kit and new services during the pandemic. The Lewy Body Society has campaigned for the rights of people living with dementia with Lewy body (DLB) and raised concerns to the Health Secretary about the possibility that pressures on the NHS and health workers may “mean greater use of drugs to treat people with DLB rather than the non-pharmacological treatments that are usually recommended”. Some professional societies, like the British Geriatrics Society, have also published guidance to support people living with dementia during the pandemic.

Many activities to support people living with dementia that were already running across the country, migrated to online mode to continue providing support, as for instance the Ely’s dementia choir, the Alzheimer’s Society Singing for the Brain and the music therapy group Together in Sound.

Measures to maintain community-based long-term care services

About 60% of people receiving home care services in the UK are people living with dementia. The UK government issued guidance on home care provision for local authorities, clinical commissioning groups and registered providers during COVID-19. Additional guidance on the safe use of PPE for domiciliary care workers was published on the 30^th April. This guidance includes the responsibility of home care providers to routinely procure personal protective equipment (PPE). However, the United Kingdom Homecare Association (UKHCA) warned that the spiralling price of PPE, among other financial pressures, may lead to many firms to close and thousands of isolated vulnerable people being left to without care services. The government announced funding to support the sector but on the 29^th April, UKHCA’s CEO declared to that home care providers were unable to source stocks from the supply chain. On the 3^rd May 2020, the lack of PPE among home care workers remains a widespread problem.

Measures to support residents in care homes

In a number of dementia care homes the staff have voluntarily moved in with their residents to shield them from the virus.

Concluding remarks

Health and care workers and third sector organisations are playing a very important role in supporting and protecting the rights of people living with dementia during the crisis in the UK. Concerning practices that involve systematic refusal of admission of people living with dementia to hospital, lack of antigen testing of those either living or working on care homes, or those moving in, a lack of PPE in care homes and mass signing of DNAR forms have been reported by different media sources and in different geographical locations across the UK with professionals and the voluntary sector speaking out about the effects and working to mitigate them. Dementia care in the UK has been negatively impacted at many levels by the COVID-19.

Note: Much of the information in this report has been gathered from media news and official reports. If you notice any inaccuracy, please email aida.gonzalez@ucl.ac.uk