Separating people with dementia from their families leads to emotional distress and can trigger the worsening of clinical symptoms, write Aida Suárez-González and Jules Storr
During the past year, while the mode of transmission of covid-19 was under intense debate and international discussion, untold harms were taking place as a result of measures introduced in the UK and many other countries in the name of infection prevention control (IPC). This damage ironically occurred to some of the most vulnerable people in society, people with dementia living in care homes, where sustained bans on visits have been in force since the beginning of the pandemic and only recently started easing in some countries. We want to focus on people with dementia because, firstly, the majority of people living in care homes have dementia (86% of all care home residents in England) and, secondly, people with dementia live with progressive cognitive and neuropsychiatric symptoms that make them particularly vulnerable to isolation and emotional distress.
In an open letter published in the Nursing Times in October 2020, experts in IPC described how the “rules” of IPC do not and should not prevent family members and close friends of people in care homes from visiting them, even during lockdown. IPC measures applied at the right time and in the right way enable safe care, and their use as a rationale for prohibiting safe entry to care homes is a misinterpretation and at times even an abuse of IPC principles.
The families of those in care homes place their trust in paid carers to adhere to recommended IPC measures. It is therefore logical that relatives should also be trusted to take those same measures to enable them to enter and have contact with their loved ones. It is this logic that seems to have been overlooked by many involved across all levels of the health and care sector, and that contributed to the unnecessary, prolonged social isolation of people in care homes. IPC measures should have been used in a way that protected people with dementia from covid-19, while at the same time enabling safe and compassionate human interaction. Contrary to this, in the name of IPC, people in care homes were isolated and prohibited from interacting with their families.
WHO expert guidance was updated in January 2021 in an attempt to end unfair, unnecessary, and harmful widespread restrictions. Yet for many people living in care homes, particularly those with dementia, they had already experienced the negative sequelae of sweeping edicts. A systematic review summarising international evidence up until February 2021 showed that the first covid-19 lockdowns led to rapid worsening of neuropsychiatric symptoms, a decline in cognition and ability to carry out activities of daily living, and an increase in the prescription of antipsychotics and benzodiazepines in people with dementia across the world. A study of 29 097 nursing home residents in the US found that, beyond morbidity and mortality, isolation severely affected the wellbeing of residents, increasing prevalence of depression, loss of cognitive function, producing more frequent episodes of incontinence, and greater physical deterioration (e.g. rates of substantial weight loss doubled).
Separating people from their families in any situation is cruel, but in the case of people with dementia, the cascade of grief and emotional distress it triggers may also precipitate the worsening of clinical symptoms. In fact, isolation is the exact opposite of what is therapeutically indicated in the dementia care guidelines from the National Institute for Health and Care Excellence, and is contrary to equality and human rights legislation. We have heard many anecdotes describing how some people with dementia could not understand why their relatives were no longer visiting and interpreted this as having been abandoned by their families. Other people who were allowed visits through a glass screen or window became confused about the reasons behind this way of interaction and believed they were being punished.
The way IPC practices have been used to justify depriving people with dementia from human interaction has no ethical justification since safe alternatives are possible and have been proposed by experts in IPC and supported by an international consensus of experts in long term and dementia care. The harms that have resulted to people with dementia are unacceptable. They should lead to reforms in international law that address how the human rights of people with dementia are monitored and enforced in long term care, and to the production of IPC dementia-specific clinical guidelines that ensure this never happens again.
Aida Suárez-González is a clinical neuropsychologist and senior researcher at the Dementia Research Centre at University College London. Twitter @Aida_Suarez_
Competing interests: none declared.