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), YoungDementia 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.

One Dementia Voice, the UK’s leading dementia organisations, welcomes the decision from the Government in response to our letter to start to safely reopen care homes to visitors. But the devil’s in the detail - it’s vital that designated family carers are treated the same as Key Workers. Family carers are an integral part of the care system and when removed from that, the essential care and wellbeing of the individual suffer. They may be the only person who is allowed to brush their loved ones’ teeth when no-one else can get near, the only one who can get their loved ones to take medicine, to eat or drink, and they act as both their voice and memory, articulating on their behalf and offering support like no one else can. 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 Mary's story 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 - Natasha's story At least 70% of care home residents have some form of dementia and many feel confused, simply not understanding why they have been forgotten about after 112 days without contact with their family and friends. We look forward to urgently hearing more detailed plans about care home visitation in the next few days. And, for the designated family carer, this must be everywhere, including in Leicester. 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. We welcome the Health Secretary’s response to our letter but we do need to see the detail of what is promised, including giving designated family carers ‘Key Worker’ status. You can read the letter here.