Worst Hi T: Dementia During Coronavirus - Alzheimer's

Worst hit:dementia duringcoronavirus

AcknowledgmentsWe would like to thank everyone who hascontributed to this report, in particularthe people affected by dementia who haveresponded to surveys and taken part inresearch that has revealed the impact ofCOVID-19. We would especially like to thankSam Evans, John O’Doherty and KarenPreston for sharing their personal stories.This report was compiled based onevidence and publications from manysources. We commend the efforts of themany people and organisations that havegathered and published evidence, cited inthe references section, on the impact ofCOVID-19 for people affected by dementia.We would especially like to thankProfessor Linda Clare (University of Exeter),Adelina Comas-Herrera (London School ofEconomics) and Professor Adam Gordon(University of Nottingham) for providingcomments on the draft manuscript.September 2020

Worst hit: dementia during coronavirusContentsForeword. 4Executive Summary. 5Recommendations. 8Mitigating against the effects of COVID-19. 9Supporting people affected by dementia.10Changing the conversation on social care. 11Introduction.12A disproportionate death toll on people with dementia.14A high proportion of people who died from COVID-19 had dementia.14Care homes were not sufficiently protected.17Alzheimer’s Society’s influence.20A disproportionate rise in excess deaths.22Losing a loved one during the COVID-19 pandemic.24A surge in loneliness and isolation.25Loneliness and isolation increased.26Health and cognitive function deteriorated.28Paid and unpaid carers were affected.29Living with dementia and losing skills during lockdown.31Our Emergency Coronavirus Appeal.32Health and social care at breaking point.33Changes in healthcare provision.34Reductions in social care services.35A lack of focus on social care and coordination with healthcare.36Family carers taking the strain.37Help us to support and campaign.38Alzheimer’s Society Services COVID-19 response.39How we adapted our services. 41Methodology.42References.443

Worst hit: dementia during coronavirusForewordOver the past six months I have been so shocked and saddened tosee people affected by dementia hit hardest by coronavirus. Morethan a quarter of those who died in England and Wales had dementia,which means it is the most common pre-existing condition forcoronavirus deaths.The biggest spike in excess deaths wasalso in people with dementia. Even withoutincluding deaths attributed to coronavirus,twice the number of people with dementiadied at the pandemic’s peak comparedto what would normally be expected.Every one of those thousands of deathsleaves behind a grieving family – the lossof a partner, a parent, a grandparent, afriend. Despite the incredible efforts ofcare home staff, the sector was largelyignored during the first part of the crisiswith devastating consequences. Peoplewith dementia have never been identifiedby government as an increased risk group.Tragically, the effects of the pandemic gobeyond this terrible death toll. I have seenand heard the devastating impact of socialisolation for people with dementia. Withoutfamily and friends able to visit, people’ssymptoms have worsened much morequickly and connections to their loved ones,sadly even those who play a vital caring role,have been lost. And it is not just people withdementia who are affected. Our surveypaints a distressing picture of the impacton those often overlooked – the army ofunpaid carers, struggling to care round theclock for their loved ones, exhausted and‘burnt out’ with nowhere else to turn.This report sets out the impactcoronavirus has had on everyone affectedby dementia. Knowing so many of thepersonal stories that lie behind thesestatistics makes it incredibly distressingto read, but we must not feel powerless inthe face of these disastrous events.I am proud that Alzheimer’s Societyadapted quickly to increase our supportonline and on the phone when we couldno longer meet people face to face. Weled the way in shining a light on the carehome catastrophe and we made thevoices of people affected by dementiaheard. Backed by 11,000 supporters, weinfluenced local and national governmentsto increase protections for them.But we cannot take on dementia alone.Coronavirus has laid bare the dire state ofthe social care system for all to see and noone can be in any doubt of the urgent needfor the Government to act in order to fix it.Until then, people with dementia willcontinue to struggle to get the attention,funding and skilled support they need to livewell and they will continue to be hardest hitin tragic circumstances.We must prevent this from ever happeningagain and give people with dementia thedignified care they deserve. The legacy ofthe pandemic must be a universal socialcare system, free at the point of use, thatprovides every person with dementia withthe quality care they need. Then and onlythen, will we finally see social care put onequal footing with the NHS, no longer thepoor relation, neglected and forgotten.Now is the time for action; now is the timeto #FixDementiaCare.Kate LeeChief Executive, Alzheimer’s Society4

Worst hit: dementia during coronavirusExecutive SummaryThe coronavirus pandemic is having a devastating impactaround the world. In the UK, people affected by dementiahave been hardest hit and our fragmented social caresystem has been exposed for all to see.Alzheimer’s Society is the UK’s leading dementia charity,and in this report we bring together evidence from awide range of sources to shine a light on the impact ofcoronavirus disease 2019 (COVID-19) on people who havedementia and those who care for them.5

Worst hit: dementia during coronavirusOver a quarter (27.5%) of peoplewho died with COVID-19 fromMarch to June had dementia.13,840The largest increase in excessnon-COVID-19 deaths was inpeople with dementia.5,049deaths of people with dementia involvingCOVID-19 in England and Wales wererecorded from March to June, makingdementia the most common pre-existingcondition in deaths involving COVID-19.1This is a hugely disproportionate impacton people with dementia who should havebeen protected.excess deaths of people with dementiawere recorded between 4 January and10th July, in addition to deaths attributeddirectly to COVID-19.2 In the peak weeksof the pandemic, double the number ofpeople with dementia died compared tothe five-year average.3For people who survived thecrisis, the effects of socialisolation were severe.The crisis hit family carersand professional carers hard.46%92 millionof people with dementia in our surveyreported that lockdown had a negativeimpact on their mental health. In a widergroup that included carers, 82% reporteda deterioration in the symptoms ofpeople with dementia.4extra hours have been spent by familyand friends caring for loved ones withdementia.5 95% of carers in our surveyreported a negative impact on theirmental or physical health.5 268 socialcare workers died with COVID-19 betweenMarch and May, a statistically significantlyhigher rate of death compared to averagefor their age and sex.66

Worst hit: dementia during coronavirusRegular health and social careservices were put on hold,creating a backlog of peoplewho have missed out onessential support.Alzheimer’s Society is here foreverybody affected bydementia during this crisis.We worked in new ways to helppeople stay connected.75%93%of care homes we surveyed in Maysaid that GPs were reluctant to visitresidents.9 The national dementiadiagnosis rate has declined steadilysince February 2020, dropping to 63.2%in July.7 This is substantially below thenational target of 66.7%.8of our service users felt that they weremore able to manage following thesupport we provided over this period.7

Worst hit: dementia during coronavirusRecommendationsThe devastating impact of COVID-19 on peopleaffected by dementia cannot be undone. However,there is now a window of opportunity for action tomitigate against further effects of the virus and tohelp those who are recovering.This pandemic has dreadfully exposed the direstate of social care and made the need for urgentreform indisputable. We welcome the Government’sconfirmation of a public inquiry so that lessons can belearnt, and the same mistakes not repeated. However,they must ensure that the needs and views of peopleaffected by dementia, as those worst hit by thepandemic, are recognised as central to this process.8

Worst hit: dementia during coronavirusMitigating against the effects ofCOVID-19 as we approach the winterReasonable worst-case scenario modelling suggests hospital deaths betweenSeptember 2020 and June 2021 could be as high as 119,900, with even highernumbers if care homes are affected. However, this doesn’t account for theaction the Government could take to reduce the transmission rate.10 We mustensure that the safety and wellbeing of people with dementia are protectedfrom a possible resurgence of coronavirus over the winter months.1The NHS and local authorities must set out how they will involve socialcare providers and care homes in winter pressure planning to ensurethat social care is placed on an equal footing with the NHS, and that theirsituation is understood, accounted for and supported. This must includethe provision of regular and timely testing and PPE.2National UK governments must guarantee that where care was stoppeddue to coronavirus precautions (particularly domiciliary care), it will bereinstated when deemed safe, without the need for unnecessary furtherformal assessment.3The UK Government must ensure that the Infection Control Fund remainsin place until at least April 2021 and care providers should be able touse that fund flexibly, including for infection control, technology andsupporting visits.4National UK governments should commit to ensuring that anycommunications to, or requirements of, people affected by dementia(both in the community and in care homes) are clear, consistent andstraightforward to understand. Any guidelines should reflect the dailylived experience and particular needs of people affected by dementia.9

Worst hit: dementia during coronavirusSupporting people affectedby dementiaPeople affected by dementia have experienced significant harm from therestrictions to social contact and reductions in services over this period. At alllevels, decision makers must recognise that informal carers are an integral partof the care system, and the value that people with dementia receive from socialcontact and give these due priority.5Recognising the key role that informal carers play in the lives of peopleliving with dementia, national UK governments must take action tosupport people in this role by:a. Allowing for at least one informal carer per care home resident tobe designated a key worker, with access to training, COVID-19 testing/vaccinations and PPE.b. Ensuring the delivery of carers’ assessments and provision of shortbreaks for carers.c. Collecting local authority and health authority data on carerassessments and respite care.678Where care homes are unable to facilitate visits from loved ones, theymust be required to notify national care inspectorates (CQC/CSSIW/RQIA)and seek to put in place suitable alternative arrangements to maintainappropriate contact between loved ones and care home residents whohave dementia.National UK governments needs to set out a clear strategy to enablepeople affected by dementia to recover from the effects of thepandemic, including rehabilitation to counteract effects on cognitive orphysical functioning, support for mental and physical health, and speechand language therapy.National UK health and social care departments must develop andimplement a clear recovery plan to ensure that all elements of memoryassessment services can re-open and urgently catch up on waiting listsso the freefall in dementia diagnosis rates does not continue.10