Every single day, my co-founder of John’s Campaign and I receive phone calls and emails from people in distress and despair. John’s Campaign is an organisation set up to fight for the rights of those who live with dementia to be accompanied by their family carers in hospital or in care homes.
We hear from the husband who has not seen his wife in her residential home for nearly a year; the wife who is witnessing at a safe social distance the dramatic deterioration of her husband in a care home with rapidly advancing dementia, that only she could help with; the family who are restricted to visiting their mother at a window, even though she is blind; the children who were finally permitted to sit at their mother’s bedside because she was near death – so near that she was unconscious and would never know that those she loved were with her at last. We hear about the woman in a care home who tried to take her own life because she thought she had been abandoned. Spouses, life partners, and children know that for their relative with dementia, the sight of a familiar face, the sound of that much-missed voice, the touch of the person they know, can be transformative. Love can heal and loneliness can kill.
For over a year now, residents of most care homes throughout the country have been locked in, and those they love have been locked out. New government guidelines came into effect last week, allowing one family member or friend to have in-person visits after testing negative for covid-19. However, there are reports that the new system has been slow to start.
The rest of society have come in and out of lockdown, with many months where restrictions were relaxed. We could visit friends and family, go to restaurants, pubs, hairdressers and gyms. We could go on holiday, resume something approaching a more normal life. But, men and women living in a ‘care home’ (I put that in quotation marks because it feels a horribly ironic word for a place where intimacy and belonging have been banished) have been denied such freedoms. They have been treated differently from the rest of society, with no respect for their own choices. They have had no agency. And the people they have trusted to speak for them have not been listened to either.
Of course, I understand the reasons for this: we’ve been told often enough that this enforced isolation is for their own safety. Listen to how we speak about older people as if they were small children, with no capacity. But, what is this narrowly defined and rigidly medical safety, that trumps all other considerations?
On 1st March, Alzheimer’s Society—in partnership with other organisations, including John’s Campaign—marked the first anniversary of the covid-19 pandemic with a collection of case studies and the results of a survey into the terrible effects of the pandemic on those living with dementia. Not only have a disproportionate number of people with dementia died from the virus, there have been a huge rise in excess deaths from dementia in care homes, and more than ninety per cent of the respondents to the survey said that they had witnessed a dramatic deterioration in their loved one’s health.
We know that people who are old and frail are far more at risk from the virus. We also know that they are equivalently more at risk to the effects of isolation, abandonment, loss of familiarity, loneliness. About seventy per cent of the people in care homes have dementia. It is estimated that more than half of them have less than a year to live. Many of them have been wrecked by the last year: pictures published in newspapers and on social media eloquently express how in twelve months a person can slide from relative vigour to a shattered old age and helplessness. Many have been wretchedly unhappy as they approach the end of their life. Many have died alone, unable to understand why at their hour of need those they love and need are not there. The trauma of this, to them and to their family, cannot be overstated.
I strongly believe that family members should never have been locked out of care homes. They should throughout the pandemic have been regarded as essential—as key workers subject to the same infection control and given the same protections as paid carers. It was always an insult to call essential care givers “visitors”, when many of them used to spend many hours every day with their loved one, feeding them, keeping them mobile, keeping them connected to the world. It was always an insult to assume that where paid carers could be trusted to follow the safety precautions, family members somehow could not (even when many of these were saying they would effectively quarantine themselves apart from their visits to the home). It was always an insult to say that closing the doors of care homes caused necessary distress—whereas in fact it caused unnecessary anguish and heartbreak.
And—perhaps cruellest of all—the narrow, clinically-based definition of end of life has been brutal. In many care homes, end-of-life has meant 48 hours (how does anyone know when that clock starts ticking), but in any human society end of life means months, even up to a year before someone dies. In the name of infection control, men and women have lived their last days alone, in bewilderment and grief. The bonds of love have been cruelly disregarded.
One ghastly year on, and it is utterly unacceptable that caregivers should be refused meaningful contact with those they love. There will always be risks, because life is made up of negotiating risks. But now we urgently need to reassert the larger picture of what kind of society we wish to pass on to future generations, or grow old in ourselves. What, in the end, makes us all human.
Nicci Gerrard is a co-founder of John’s Campaign
Competing interests: none further declared