{"id":50660,"date":"2021-07-15T13:55:00","date_gmt":"2021-07-15T12:55:00","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=50660"},"modified":"2021-07-22T13:28:34","modified_gmt":"2021-07-22T12:28:34","slug":"enforced-restrictions-to-care-home-access-unfair-unnecessary-and-harmful","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2021\/07\/15\/enforced-restrictions-to-care-home-access-unfair-unnecessary-and-harmful\/","title":{"rendered":"Enforced restrictions to care home access\u2014unfair, unnecessary, and harmful\u00a0"},"content":{"rendered":"<p class=\"standfirst\">Separating people with dementia from their families leads to emotional distress and can trigger the worsening of clinical symptoms, write Aida Su\u00e1rez-Gonz\u00e1lez and Jules Storr<\/p>\n<p><!--more--><span style=\"font-weight: 400\">During the past year, while the <\/span><a href=\"https:\/\/pubmed.ncbi.nlm.nih.gov\/33453351\/\"><span style=\"font-weight: 400\">mode of transmission of <\/span><span style=\"font-weight: 400\">c<\/span><span style=\"font-weight: 400\">ovid-19<\/span><\/a><span style=\"font-weight: 400\"> 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, <\/span><a href=\"https:\/\/ltccovid.org\/2020\/08\/19\/impact-and-mortality-of-covid-19-on-people-living-with-dementia-cross-country-report\/\"><span style=\"font-weight: 400\">people with dementia<\/span><\/a><span style=\"font-weight: 400\"> living in care homes, where sustained <\/span><a href=\"https:\/\/ltccovid.org\/2020\/11\/01\/pre-print-rapid-review-of-the-evidence-on-impacts-of-visiting-policies-in-care-homes-during-the-covid-19-pandemic\/\"><span style=\"font-weight: 400\">bans on visits<\/span><\/a><span style=\"font-weight: 400\"> 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 <\/span><a href=\"https:\/\/pubmed.ncbi.nlm.nih.gov\/28794896\/\"><span style=\"font-weight: 400\">England<\/span><\/a><span style=\"font-weight: 400\">) and, secondly, people with dementia live with progressive cognitive and neuropsychiatric symptoms that make them particularly vulnerable to isolation and emotional distress.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400\">In an <\/span><a href=\"https:\/\/www.nursingtimes.net\/opinion\/open-letter-infection-prevention-and-control-should-never-be-at-the-expense-of-compassionate-care-16-10-2020\/\"><span style=\"font-weight: 400\">open letter<\/span><\/a><span style=\"font-weight: 400\"> published in the <\/span><i><span style=\"font-weight: 400\">Nursing Times<\/span><\/i><span style=\"font-weight: 400\"> in October 2020, experts in IPC described how the \u201crules\u201d 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 <\/span><a href=\"https:\/\/enablesafecare.org\/\"><span style=\"font-weight: 400\">enable safe care<\/span><\/a><span style=\"font-weight: 400\">, <\/span><span style=\"font-weight: 400\">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.<\/span><span style=\"font-weight: 400\">\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400\">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.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400\">WHO <\/span><a href=\"https:\/\/apps.who.int\/iris\/handle\/10665\/338481\"><span style=\"font-weight: 400\">expert guidance<\/span><\/a><span style=\"font-weight: 400\"> 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 <\/span><a href=\"https:\/\/www.medrxiv.org\/content\/10.1101\/2021.03.17.21253805v1\"><span style=\"font-weight: 400\">systematic review<\/span><\/a><span style=\"font-weight: 400\"> 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 <\/span><a href=\"https:\/\/www.jamda.com\/article\/S1525-8610(21)00306-6\/pdf\"><span style=\"font-weight: 400\">of 29 097 nursing home residents<\/span><\/a><span style=\"font-weight: 400\"> 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).\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400\">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 <\/span><a href=\"https:\/\/www.nice.org.uk\/guidance\/ng97\/chapter\/Recommendations#managing-non-cognitive-symptoms\"><span style=\"font-weight: 400\">dementia<\/span><\/a><span style=\"font-weight: 400\"> care guidelines from the National Institute for Health and Care Excellence, and is contrary to <\/span><a href=\"https:\/\/www.leighday.co.uk\/latest-updates\/news\/2020-news\/johns-campaign-issues-challenge-to-blanket-ban-approach-on-care-home-visits-in-higher-risk-areas\/\"><span style=\"font-weight: 400\">equality and human rights<\/span><\/a><span style=\"font-weight: 400\"> 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.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400\">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 <\/span><a href=\"https:\/\/www.ajicjournal.org\/article\/S0196-6553(20)31091-9\/fulltext\"><span style=\"font-weight: 400\">experts in IPC<\/span><\/a><span style=\"font-weight: 400\"> and supported by an <\/span><a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pmc\/articles\/PMC7908840\/\"><span style=\"font-weight: 400\">international consensus<\/span><\/a><span style=\"font-weight: 400\"> 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.<\/span><\/p>\n<p><em><span style=\"font-weight: 400\"><strong>Aida Su\u00e1rez-Gonz\u00e1lez<\/strong> is a clinical neuropsychologist and senior researcher at the Dementia Research Centre at University College London. Twitter <\/span><\/em><a href=\"https:\/\/twitter.com\/Aida_Suarez_\"><span style=\"font-weight: 400\">@Aida_Suarez_<\/span><\/a><\/p>\n<p><em><span style=\"font-weight: 400\"><strong>Jules Storr<\/strong> is a registered nurse and an infection prevention and control expert and consultant. <a href=\"https:\/\/twitter.com\/julesstorr\">@julesstorr<\/a> <a href=\"https:\/\/twitter.com\/SafeSaferSafest\">@SafeSaferSafest<\/a><\/span><\/em><\/p>\n<p><strong>Competing interests:<\/strong> none declared.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Separating people with dementia from their families leads to emotional distress and can trigger the worsening of clinical symptoms, write Aida Su\u00e1rez-Gonz\u00e1lez and Jules Storr [&#8230;]<\/p>\n<p><a class=\"btn btn-secondary understrap-read-more-link\" href=\"https:\/\/blogs.bmj.com\/bmj\/2021\/07\/15\/enforced-restrictions-to-care-home-access-unfair-unnecessary-and-harmful\/\">More&#8230;<\/a><\/p>\n","protected":false},"author":419,"featured_media":50661,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[223],"tags":[],"class_list":["post-50660","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-guest-bloggers"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.5 - 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