They must be recognised as essential, and given the same status as key workers
All over the country, in care homes and hospital wards, people are being separated from their family carers and relatives in the name of safety and infection control. A wife cannot see her husband of fifty years, except through a window; he has dementia and just wants to be hugged. A daughter cannot see her frail and cognitively impaired mother, except through a fence. A son who lives abroad and has flown back specially to see his parent is allowed a thirty minute visit in a garden, in a mask, at a distance, and chaperoned. This is not just distressing, it causes damage, and where a person has dementia, may potentially even hasten death.
Six years ago, I founded John’s Campaign with my friend Julia Jones. It is named after my father, John Gerrard, who lived with dementia for ten years. After witnessing his catastrophic decline in hospital, where he was separated from his family because of an outbreak of norovirus, and left bewildered and alone, I made a pledge that other people should not experience what he experienced, and that other families should not go through what we went through.
I learnt from my father’s story, which is also the story of tens and thousands of people, that those who live with dementia are in a precarious position. They have a neuro-degenerative disease that endangers their deepest sense of self, and it is the people who know them best and love them most who can best help them hold on to their connection to that self. John’s Campaign is founded on the principle that family carers—who by the way are not visitors—are essential to the wellbeing of a person with dementia.
For six years, we have made steady progress in changing the culture of care for a person with dementia when they leave their own home to go into hospital or a care home. But covid-19 has changed all that. Overnight, doors were closed, and the people behind those doors often could not understand why the spouse or child who had been coming to spend time with them—often daily or twice daily—was no longer there. We have heard hundreds of stories of such anguish.
Covid-19 is not the only risk we currently face, although residents in care homes have been disproportionately affected by the pandemic. The ONS confirms that deaths from dementia have risen sharply during the last six months.
John’s Campaign, along with the One Dementia Voice, which is an umbrella coalition of many charities and organisations, argues that family carers must be recognised as essential, and given the same status as key workers. Surely these carers, who are acting out of duty and love, should be trusted to take sensible precautions and behave as responsibly as those who are paid.
John’s Campaign strongly believes that the enforced separation is a violation of fundamental human rights: it must end, and it must end soon. People in care homes have an average life expectancy of two-and-a-half years; in nursing homes, it is thirteen months. Six of these months have now gone for people living in care homes during the covid-19 pandemic. The legacy of grief and guilt will be enormous for their family carers if they are unable to spend proper time with them, and tend them in the way that they used to.
Since March, we have campaigned to bring about change. We recognise that care homes and local authorities, fearful of the financial and legal liability, need government guidelines to recognise the importance of human rights, and that without this they will not be able to welcome family members or carers. For that reason, we are asking the government for a judicial review, and intend to crowdfund to cover legal costs. It seems a shame that we have to turn to the law to enforce what should be a matter of common sense and kindness, but it is our last resort.
Nicci Gerrard is a co-founder of John’s Campaign
Competing interests: none further declared.