Coalition says ‘never again’ as Alzheimer’s Society investigation reveals 92% report pandemic causing more rapid increase in dementia symptoms. Worst hit by coronavirus, a staggering 34,000 people with dementia are now estimated to have died from coronavirus since the pandemic hit the UK in full force in March 2020.1 In addition, new calculations from the ONS reveal that deaths of care home residents (where at least 70% of people have dementia) are 30% higher than previously thought bringing total deaths to nearly 12,000 (11,624) since January alone.2 A coalition of dementia organisations including Alzheimer’s Society, Dementia UK, John’s Campaign and tide (together in dementia everyday), have come together to say never again will those affected and their families face such hardship and loss. Our investigation has shown the pandemic’s toll goes even further than deaths from the virus. In a survey of 1001 people who care for a family member, partner or someone close to them with dementia3, an overwhelming 92% said the pandemic had accelerated their loved one’s dementia symptoms4; 28% of family carers said they’d seen an ‘unmanageable decline’ in their loved ones’ health5, while Alzheimer’s Society’s support services have been used over 3.6 million times since the pandemic began. Alzheimer’s Society’s support line and Dementia UK’s Helpline have been flooded with calls from relatives telling us how quickly their loved ones are going downhill, losing their abilities to talk or feed themselves. Nearly a third (32%) of those who lost a loved one during the pandemic thought that isolation/lack of social contact was a significant factor in that loss.6 People with dementia in care homes have been cut off from their loved ones for almost a year, contributing to a massive deterioration in their health. A third (31%) reported a more rapid increase in loved ones’ difficulty speaking and holding a conversation, and quarter (25%) in eating by themselves.7 Only 13% of people surveyed have been able to go inside their loved one’s care home since the pandemic began, almost a quarter (24%) haven’t been able to see their loved one at all for over six months.8 Family carers are absolutely integral to the care system, and to the people for whom they care - it’s they who know how to get their loved ones to eat, drink, take medicine - and are often the first to know when something is wrong, which is why the coalition is calling for visits, done safely, to be the default position.

Kimberley Peaks (47) is from Leicestershire. Her mum, Janet, (76), has dementia and has lived in a care home for the last three years. “This past year has taken such a toll on my mum. Before the pandemic, I would visit two or three times a week, help feed her, play her favourite music. She would look at me, smile – she always knew I was there. But now being behind a screen 10 foot away means she can’t see me and she’s stopped reacting to me being there. She’s lost the brightness in her eyes and she just sits hunched in a chair. I’ll wear all the PPE I need to, but she needs me to be near her and talk to her close up. My kids miss her too, she’s their only grandma and she hasn’t seen them all year. I’m so pleased that in person visits will be starting again, but that doesn’t take away from how devastating this year has been.”

The pandemic has not just hit those in care homes. 470,000 people with dementia live in the community, many reliant on unpaid family carers for support. 42% of these carers say lockdown has caused a rapid increase in feelings of depression in their loved one, while over half (54%) say they’ve seen a rapid loss of memory.9 Carers themselves have been hugely affected – seven out of ten (73%) say that the last year has negatively impacted their mental and physical health with anxiety (42%) and exhaustion (34%) the most cited symptoms.10 Over half (54%) saying that the pandemic has left them feeling less able to care for their loved one.11

Liz Brookes (64) cares for husband Mike (78) who has been living with vascular dementia for 9 years, but was diagnosed with Alzheimer’s in lockdown, over the phone. “Winter was so hard, we are so worn out with it all. As carers we’re so lonely, we’re isolated, exhausted and traumatised. Mike is losing skills all the time, and as his carer I have to self-isolate for him – I have to protect what he is doing. My own isolation is magnified, but I don’t want to jeopardise him.” We’ve both had our first jab of the vaccine which is a great relief, but that doesn’t change how difficult this year has been. People talk about how we’ll ‘bounce back’ from this – but how does someone with dementia bounce back? Things need to change.” Kate Lee, Chief Executive Officer at Alzheimer’s Society said: “Coronavirus has shattered the lives of so many people with dementia, worst hit by the pandemic - lives taken by the virus itself, and many more prematurely taken due to increased dementia symptoms and, in part, loneliness. Each one leaves behind a grieving family. Family carers, too, have been buckling under the strain. We urge the Government to support people affected by dementia whose lives have been upended, putting recovery plans in place, but also making the legacy of Covid-19 a social care system that cares for the most vulnerable when they need it.” Dr Hilda Hayo, Chief Admiral Nurse and Chief Executive at Dementia UK: "We have seen first-hand how challenging the pandemic has been for families with dementia. The sudden closure of support and respite services, the separation from family and friends, and the deterioration coming from all of this, has led to families storing up huge amounts of emotional distress. This will be felt long into the future. We absolutely need to ensure that no families with dementia get left behind on such a scale again and we urgently need to see the national and local support in place now for families going forwards.” Nicci Gerrard, co-founder of John’s Campaign said, “During this past terrible year, those living with dementia have endured incalculable damage, loneliness and suffering. People have died of sadness, and those who love them will have to live with the grief and guilt of that. Now we must all come together to say that this is not the kind of society we want to live in and grow old in: it must never happen again.” Together in dementia everyday Chair Jean Tottie said, “Carers of people with dementia struggled to cope as support services were withdrawn overnight. The shutting of day centres and the withdrawal of carers support meant carers were left to cope 24/7 on their own. This cannot be allowed to happen again”

Alzheimer’s Society, Dementia UK, John’s Campaign and tide (together in dementia everyday) are calling for: • Local health and social care providers to develop Recovery Plans with the needs of people affected by dementia at their heart. • Meaningful – close contact, indoor – visits, done safely, to be the default position from 8 March. • Local authorities and care providers, as the CQC said recently, to avoid blanket bans, which, where there is no active outbreak, are unacceptable. • For NHS England and UK equivalents to provide guidance to GP surgeries to enable family carers to register their carer status – and for family carers to do so to ensure they get vaccination priority • Universal social care as a legacy of Covid-19, free at point of use, like the NHS, like education – and providing quality care for every person with dementia and in their families who needs it.

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Ends     Notes 1. Of the deaths registered by 12 February 2021 in England and Wales, 124,978 mentioned COVID-19 on the death certificate. Source: https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/bulletins/deathsregisteredweeklyinenglandandwalesprovisional/weekending12february2021 An estimated 27.5% of all people who died of COVID-19 were people with a diagnosis of dementia, from an ONS analysis of 50,335 people who died of COVID-19 where 13,840 had dementia as a pre-existing condition. https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/bulletins/deathsinvolvingcovid19englandandwales/deathsoccurringinjune2020 2. New ONS data on care home deaths from January 2021 now include care home residents who died have died outside the care home. There have been 8,905 people who died of Covid in care homes since 2 January 2021, but 11,624 care home residents have died of Covid, meaning 2,719 additional deaths. Source: https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/deaths/datasets/carehomeresidentdeathsregisteredinenglandandwalesprovisional 3. Alzheimer’s Society, through Yonder data solutions polled 1001 people who care for either a family member, partner or someone close to them with dementia 4. When asked ‘do you think that since March 2020 the pandemic has caused a more rapid increase in any of the following symptoms of dementia in your loved one?’ 920 respondents ticked at least one of the symptoms 5. When asked ‘how has the health and well-being of your loved one fared over the past year?’ 278 respondents ticked 'I've seen an unmanageable decline in health and wellbeing 6. 218 people responded that they had lost a loved one with dementia since coronavirus began. Of these 218, 40 ticked ‘Because of their dementia, but brought on prematurely due to isolation as knock-on effect of lockdown’ and 31 ticked ‘I feel isolation/lack of social contact was a major contributor in a more rapid decline since lockdown’ 7. Of the 161 people who answered the survey with a loved one in a care home, 50 reported a more rapid increase in loved ones’ ‘difficulty speaking and holding a conversation’ and 41 in ‘eating by themselves’ 8. Of the 126 people who have been able to visit their loved one, only 17 ticked that this was an 'In person visit where I was able to go inside the care home/nursing home and have close contact with my loved one. Of the 161 people who answered the survey with a loved one in a care home, 38 ticked that the last time they saw their loved one was ‘more than 6 months ago’ 9. Of the 764 people who answered the survey with a loved one in the community, 318 reported a more rapid increase in loved ones’ ‘feelings of depression’ and 447 in ‘loss of memory’ 10. Question asked: Since 23 March last year, have caring responsibilities had an impact on your mental and physical health in any of the following ways? 827 people responded, 658 ticked at least one mention, 350 ticked ‘I feel anxious’, 283 ticked ‘I feel constantly exhausted’ 11. Question asked: Has the pandemic impacted how able you feel to care for your loved one. 827 people answered question, 446 ticked ‘Yes - I feel less able to care for my loved one’ About Alzheimer’s Society  For up to date information, services and practical advice, please visit alzheimers.org.uk  Alzheimer's Society is the UK's leading dementia charity. We provide information and support, fund research, campaign to improve care and create lasting change for people affected by dementia in England, Wales and Northern Ireland.  Dementia deaths are rising year on year and 225,000 will develop dementia this year - that’s one every three minutes.  Dementia costs the UK economy over £26 billion per year. This is the equivalent of more than £30,000 per person with dementia.  Alzheimer’s Society funds research into the cause, care, cure and prevention of all types of dementia. This includes a £50 million investment in the UK's first dedicated Dementia Research Institute. About tide • tide empower carers by recognising them as experts by experience. tide is a free network open to any carer, or former carer, of someone living with dementia. Each individual’s experience is valuable and welcomed www.tide.uk.net About Dementia UK • Dementia UK is the only UK charity dedicated to supporting whole families affected by dementia through dementia specialist Admiral Nurses • If you need advice or support on living with dementia contact Dementia UK’s Admiral Nurse Dementia Helpline on 0800 888 6678 or email helpline@dementiauk.org. The Helpline is staffed by experienced Admiral Nurses, who give vital support by telephone or email. • For more information visit www.dementiauk.org, follow Dementia UK on Twitter: @DementiaUK, and on Facebook: www.facebook.com/DementiaUK1/