Worst hit: dementia during Covid

Kate Lee, CEO, Alzheimer’s Society

People with dementia have been worst hit by coronavirus. Not only in terms of the tragic number of deaths, but the knock-on effect of lockdown which has been catastrophic for those with the condition and their families up and down the country. Our Alzheimer’s Society Dementia Connect support line has been flooded with desperate calls from relatives describing loved ones losing their ability to talk or feed themselves, going downhill rapidly, and ultimately giving up on life. Isolation has a terrible impact – they have lost their routines, contact with family and friends, and faced reductions to vital health and social care support. Some have gone without seeing those they love and care about most for almost a year. Our Alzheimer’s Society services have been used more than 3.7 million times and are needed now more than ever.

Our Worst Hit report[1] has made it clear how important social contact with loved ones is to the health and wellbeing of people with dementia, particularly the essential role of family carers. They are often the first to spot pain or when something is wrong, know how to get people to eat, drink and take medicine and act as their voice – it is no exaggeration to say they are keeping them alive. In our recent survey of families affected by dementia,[2] nearly a third (32%) of those who lost a loved one during the pandemic believed that isolation was a significant factor[3] and a staggering 92% reported a more rapid increase in dementia symptoms.[4] We’ve been campaigning over the last year to try and ensure that protecting people with dementia physically is balanced with mental health considerations – including ways of safely allowing visitors into care homes. We have tirelessly lobbied for access to the tests and PPE that visitors and staff so desperately needed, for recognition of family carers as essential care givers, and offered essential support to anyone who couldn’t see their loved ones.

We also recognise the vital role professional care has for many families. Four in ten people who receive homecare told us it was reduced or stopped, meaning family carers have been left completely exhausted without respite. The coronavirus pandemic has brutally exposed how our broken social care system fails people with dementia and their carers. By investing in projects like New Interventions for Independence in Dementia (NIDUS), one of three Alzheimer’s Society supported ‘Centres of Excellence in Dementia Care Research’, we aim to improve dementia care, including training and support programmes for family and care professionals tailored to the specific needs of people with dementia.

We need the Government to honour their commitment to fix social care. This Dementia Action Week, we are asking them to make the legacy of this crisis the rebuilding of the social care system to one we can all be proud of. The opportunity for reform should set a new vision for social care – one that gives our most vulnerable the support they so desperately need, and the dignity in their final years of life that they deserve. Social care should be there to help people live their lives the way they choose, by delivering personalised, good quality, and easy-to-access care that puts the individual at the centre. One in three of us born in the UK today will go on to develop dementia in our lifetime, which is why we won’t stop until everyone can access high quality dementia care. The opportunity for change is now.

 To support Dementia Action Week (17-23 May 2021) and for more information and advice about dementia, please visit Alzheimer’s Society’s website at alzheimers.org.uk/DAW

[1] https://www.alzheimers.org.uk/sites/default/files/2020-09/Worst-hit-Dementia-during-coronavirus-report.pdf
[2] 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.
[3] 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’
[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


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