Worst hi t: dementia during coronavirus - Alzheimer's

Worst hit: dementia during

coronavirus

Acknowledgments

We would like to thank everyone who has contributed to this report, in particular the people affected by dementia who have responded to surveys and taken part in research that has revealed the impact of COVID-19. We would especially like to thank Sam Evans, John O'Doherty and Karen Preston for sharing their personal stories. This report was compiled based on evidence and publications from many sources. We commend the efforts of the many people and organisations that have gathered and published evidence, cited in the references section, on the impact of COVID-19 for people affected by dementia. We would especially like to thank Professor Linda Clare (University of Exeter), Adelina Comas-Herrera (London School of Economics) and Professor Adam Gordon (University of Nottingham) for providing comments on the draft manuscript.

September 2020

Contents

3 Worst hit: dementia during coronavirus

Foreword....................................................................................................... 4

Executive Summary................................................................................. 5

Recommendations................................................................................... 8

Mitigating against the effects of COVID-19.............................................................. 9 Supporting people affected by dementia..............................................................10 Changing the conversation on social care............................................................. 11

Introduction............................................................................................... 12

A disproportionate death toll on people with dementia..........14

A high proportion of people who died from COVID-19 had dementia..........14 Care homes were not sufficiently protected........................................................17 Alzheimer's Society's influence..................................................................................20 A disproportionate rise in excess deaths...............................................................22 Losing a loved one during the COVID-19 pandemic............................................24

A surge in loneliness and isolation...................................................25

Loneliness and isolation increased...........................................................................26 Health and cognitive function deteriorated...........................................................28 Paid and unpaid carers were affected....................................................................29 Living with dementia and losing skills during lockdown....................................31 Our Emergency Coronavirus Appeal.........................................................................32

Health and social care at breaking point.......................................33

Changes in healthcare provision................................................................................34 Reductions in social care services............................................................................35 A lack of focus on social care and coordination with healthcare..................36 Family carers taking the strain...................................................................................37 Help us to support and campaign.............................................................................38

Alzheimer's Society Services COVID-19 response.....................39

How we adapted our services..................................................................................... 41

Methodology.............................................................................................42

References.................................................................................................44

4 Worst hit: dementia during coronavirus

Foreword

Over the past six months I have been so shocked and saddened to see people affected by dementia hit hardest by coronavirus. More than a quarter of those who died in England and Wales had dementia, which means it is the most common pre-existing condition for coronavirus deaths.

The biggest spike in excess deaths was also in people with dementia. Even without including deaths attributed to coronavirus, twice the number of people with dementia died at the pandemic's peak compared to what would normally be expected. Every one of those thousands of deaths leaves behind a grieving family ? the loss of a partner, a parent, a grandparent, a friend. Despite the incredible efforts of care home staff, the sector was largely ignored during the first part of the crisis with devastating consequences. People with dementia have never been identified by government as an increased risk group.

Tragically, the effects of the pandemic go beyond this terrible death toll. I have seen and heard the devastating impact of social isolation for people with dementia. Without family and friends able to visit, people's symptoms have worsened much more quickly and connections to their loved ones, sadly even those who play a vital caring role, have been lost. And it is not just people with dementia who are affected. Our survey paints a distressing picture of the impact on those often overlooked ? the army of unpaid carers, struggling to care round the clock for their loved ones, exhausted and `burnt out' with nowhere else to turn.

This report sets out the impact coronavirus has had on everyone affected by dementia. Knowing so many of the personal stories that lie behind these statistics makes it incredibly distressing to read, but we must not feel powerless in the face of these disastrous events.

I am proud that Alzheimer's Society adapted quickly to increase our support online and on the phone when we could no longer meet people face to face. We led the way in shining a light on the care home catastrophe and we made the voices of people affected by dementia heard. Backed by 11,000 supporters, we influenced local and national governments to increase protections for them.

But we cannot take on dementia alone. Coronavirus has laid bare the dire state of the social care system for all to see and noone can be in any doubt of the urgent need for the Government to act in order to fix it.

Until then, people with dementia will continue to struggle to get the attention, funding and skilled support they need to live well and they will continue to be hardest hit in tragic circumstances.

We must prevent this from ever happening again and give people with dementia the dignified care they deserve. The legacy of the pandemic must be a universal social care system, free at the point of use, that provides every person with dementia with the quality care they need. Then and only then, will we finally see social care put on equal footing with the NHS, no longer the poor relation, neglected and forgotten.

Now is the time for action; now is the time to #FixDementiaCare.

Kate Lee Chief Executive, Alzheimer's Society

5 Worst hit: dementia during coronavirus

Executive Summary

The coronavirus pandemic is having a devastating impact around the world. In the UK, people affected by dementia have been hardest hit and our fragmented social care system 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 a wide range of sources to shine a light on the impact of coronavirus disease 2019 (COVID-19) on people who have dementia and those who care for them.

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