Dementia organisations united in One Dementia Voice call on Government to avert hidden catastrophe – allowing family carers to visit Care Homes

10 July 2020

People with dementia have been hardest hit by the recent COVID 19 pandemic, from the number of people in care homes who have died from coronavirus to the people with dementia living at home lacking guidance and isolated from social contact and for many, that has affected essential health and care support. The evidence is stark – data shows a 52% surge in deaths among people with dementia since lockdown, beyond those caused by the virus.

Therefore, for the first time, the UK’s leading dementia organisations, John’s Campaign, Innovations in Dementia, Dementia UK, TIDE (Together in Dementia Everyday), Young Dementia UK, Alzheimer’s Society and Alzheimer’s Research UK, have united to speak as one voice on behalf of the millions who have been adversely affected, calling on the Secretary of State and the PM to grant a designated family carer access to care homes in line with ‘Key Workers’ – care home staff. This must include safe, regular and repeated testing, so they can visit care homes safely, and provide the care and contact so desperately needed. Every one of these organisations urges for the hidden catastrophe to be averted, to avoid further tragedy. More must be done to help those with dementia and their carers.

Here are just some of the stories we have found on how people have been affected by the pandemic. The immediate cessation of all support for carers who live at home led to so much confusion for Jackie’s husband who had early onset dementia and had to go into a care home at the age of 56. Jackie’s life had already been turned upside down as she had had to give up her job to look after her husband, who has now unexpectedly had to move into full time care. Watch Jackie’s story here

The lockdown of care home to visitors means people have been unable to visit their loved ones. The charities are raising awareness that, for people with dementia, this is not only emotional contact for distressed people with dementia, who are confused as to why visitors aren’t coming and why staff are wearing equipment, but also essential care and the voice and memory that keeps people tethered to the world. Mary from Wales who regularly visited her husband did not see him for 15 weeks. Mary worried that her husband might have forgotten her and wasn’t sure how he was coping; her story demonstrates how just one 15 minute visit gave her some reassurance.

Yet still the Government have refused to acknowledge care homes in any of the lockdown relaxation rules. Guidance has been issued in Scotland, Wales and Northern Ireland – but still nothing in England. There have been examples of care homes who have tried to do their best to adapt to the situation, for example introducing virtual visits. We applaud these care homes who have adapted to a demanding situation. Unfortunately this approach does not work for all. Natasha’s story explains why the virtual visits were not enough for her mum

What Next?
We have joined together to form ‘One Dementia Voice’ and have written a letter to the Secretary of State For Health and Social Care to demand action for people with dementia.

You can read the letter here.