An open letter to the Government - allow family carers key worker status

Speaking with #OneDementiaVoice, dementia organisations across the country are calling on the Government to avert hidden catastrophe by giving family carers key worker status when visiting care homes.

One Dementia Voice, the UK’s leading dementia organisations, welcome the decision from the Government in response to our letter below 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 suffers. 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.

At least 70 per cent 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.

We understand the need for caution but the Government must provide safe, regular and repeated testing for family carers, like key workers, so they can get back in to care homes safely and provide the unique support only they offer.

2 July 2020

Dear Secretary of State,

The hidden catastrophe that is taking place in care homes because of Covid-19 needs to be addressed urgently by the government. Alongside the extraordinary number of deaths in homes, vastly higher for people with dementia than any other group, there has also been much suffering and a deterioration in mental and physical health among many of the residents because of the ban on all visitors.

This enforced separation has had particularly damaging consequences for those living with dementia (who make up over seventy per cent of the population of care homes) and their carers. Family carers have reported that the Covid-19 guidance on visiting care homes is not uniform across the UK nations, and providers interpret it differently leaving many feeling exasperated by this lack of consistency. This is particularly acute where they are distant carers, with their relative in another one of the nations. The inconsistency of the guidance and policies across the UK is causing additional confusion and stress.

However heroic a job staff have been doing, family carers remain key, essential members of the residents’ care and support network, as the biggest workforce in dementia care providing 44 per cent of the total cost of care, saving the economy £13.9bn a year. They not only provide practical services that contribute directly to their family member’s well-being, but also act as their advocates, voice and memory, keeping them connected to the world. We have heard countless stories of the anguish that both the residents (who may feel bewildered and abandoned) and their anxious family carers have experienced.

What’s more, without these essential family carers, the cognitive abilities of a person with dementia can deteriorate rapidly, and this enforced isolation from family and friends can be fatal. The sharp spike in excess deaths in care homes since the pandemic began is not just caused by the virus; there has also been a significant rise, 52%, in non-coronavirus-related deaths for people with dementia. It is vital that the contribution of family carers is respected and that, in the context of Covid-19 policy guidance, they are recognised as ‘Key Workers’ alongside professional staff - so we are calling for safe, regular and repeated testing of all staff & residents, to ensure safety of visits.

On 23 June, the Prime Minister announced that, on 4 July, pubs, hairdressers, cinemas, museums and galleries in England could all begin to open their doors. But he made no mention of care homes - not even an explanation of why they are exempt from the relaxation. So now, if someone with dementia is in hospital, they can be visited: hospitals changed their visiting guidelines at the end of April to take account of the danger that isolation poses to people who have mental health difficulties such as dementia, though not all ward managers are welcoming this. If someone with dementia lives in their own home, they can be visited. But if they live in a care home, they often cannot.

This is not just cruel and unnecessary, it is a violation of their fundamental rights under the Human Rights Act 1998 (Article 2: Right to life; Article 8: Respect for your private and family life, home and correspondence) and the United Nations Convention on the Rights of Persons with Disabilities (Article 19: Living independently and being included in the community). All public bodies, including government, local authorities and care home providers, have a legal duty not only to uphold people’s human rights but also to promote them - which in this particular case they are failing to do. Family carers, whose own mental health has been put at risk by the separation, should, and must be able to, see, nurture and touch those they support, while of course following exactly the same infection-control protocols as the paid carer.

For this to happen, care homes urgently need informed guidance from a government that has been strangely silent. The care-provider organisations have done their best, but they do not have the authority to instruct their members, and many managers of care homes will refuse to open up until they receive specific instruction to do so from the Government. Meanwhile, every day counts: many of the residents are in the last stage of their life.

Families have reported immeasurable feelings of living grief and bereavement as a result of not being able to see their relatives, and not being able to spend quality time with them at this end stage of life. Covid-19 has been a tragedy in those very places which should be refuges; the consequences of preventing people who are frail and precarious from seeing those they know, love and need may in the long term be even more damaging, both to them and to all those who care for them.

We are therefore calling – with one united voice - for the Government to grant designated family and friend carers the same status as a ‘Key Worker’ care home member of staff, allowing them the same access to care homes with the same provision of testing so they can meet the essential needs of residents. This is in recognition of the damage that separation can have on those with dementia and the legal obligations to ensure that people’s human rights are recognised, respected and upheld in all care settings.

Yours sincerely,

Nicci Gerrard and Julia Jones, Co-Founders, John’s Campaign

Philly Hare, Co-Director, Innovations in Dementia

Hilda Hayo, Chief Admiral Nurse/Chief Executive, Dementia UK

Anna Gaughan, Chief Executive, TIDE (Together in Dementia Everyday)

Tessa Gutteridge, Director, YoungDementia UK

Kate Lee, Chief Executive, Alzheimer’s Society

Ian Wilson, Chief Executive, Alzheimer’s Research UK


Dementia charity logos in unity