Recognising the human rights of people with dementia during COVID-19

One of the most distressing aspects of the COVID-19 pandemic for me has been the treatment of older people living in care homes – and the uncomfortable spotlight cast on the way their fundamental needs and interests are often overlooked.

The consequences of being out of sight and out of mind from the public eye have been profound and disturbing. The Council’s report Dementia: ethical issues, published back in 2009, has much to say, and much to challenge, about troubling current practices.

The ethical approach set out in the 2009 report rested on the recognition of the ‘personhood, identity and value’ of people with dementia – and on the crucial role played by close family members and other carers in supporting them and maintaining their sense of self. This role continues, even when people with dementia or with other significant care needs move permanently into residential or nursing care. Ongoing relationships with family and friends provide crucial emotional care – and indeed in many cases a reason for continuing to live. In addition to this emotional support (just as essential as physical care), many family carers also provide practical support, supplementing care provided by staff – for example, spending hours every day encouraging loved ones to eat and drink. And yet it is precisely this care that is being prevented by increasingly widespread bans on visits to care homes. To quote one care home resident: “I’ve survived the virus, but for what?”

Very early on in the pandemic, the front doors of care homes were closed to family visitors – with the laudable aim of protecting residents, most of whom would be at very high risk of serious complications, from the new virus. However, as has been well documented since, any protective element of this policy was instantly undermined by the back door being left wide open: hospital patients were hastily discharged to care homes, without being tested, in order to free up space for COVID patients. A series of problems with access to PPE and testing for care staff, not to mention the government’s apparent lack of awareness of the significant use of agency staff in the care sector, made effective infection control within homes difficult to impossible. As a result, older people have not only been deprived of the crucial family contact and emotional care provided by their regular visitors, but also exposed to a shocking degree to the risks of the virus.

Things do not appear to be improving. As the first wave of the pandemic came under control and testing became easier to access, more visits were allowed, particularly in gardens during the good weather. However, that brief interlude is rapidly coming to a close, with blanket bans reported on visitors in all care homes (with the sole exception of ‘end of life’ visits) in the many areas subject to local restrictions. Even outside these areas, there are distressing accounts of ever-more limited approaches bearing alarming resemblance to prison visits:

Visits were to be 30 minutes per resident per week in a tent in the busy car park, separated by a large table, behind a large plastic screen. We wore masks. No touching, no hugging … Once, having booked through the compulsory channel, my visit was then vetoed and cancelled for no clear reason by another employee. The effect was devastating. Now I almost fear turning up for my visit to my own husband.

The stories shared daily on the Twitter feed of John’s Campaign – an organisation that has been seeking for ‘key worker’ status for carers of care home residents long before the advent of COVID-19 – illustrate this is hardly an isolated example, with many family members unable to see their loved ones at all for many months.

As Age UK recognise, in their intervention on this issue earlier this week, the risks of infection must be taken seriously, and no visit can be undertaken lightly. However, they go on to make the crucial point that: “to deprive people living in care homes of the stimulation and unprecedented pleasure that ‘visiting’ bring creates significant risks. Social care is a holistic service – it is concerned with people’s mental and physical health alongside their spiritual and emotional wellbeing – we lose sense of the balance of all these elements at our peril.”

In other words, physical risks such as infection are just one of the many risks that should be taken into account in determining policies in this area. Age UK go on to make a number of highly practical suggestions as to how contact between families and those living in care homes could be maintained, including access to testing and PPE for visitors and, where necessary, the designation of one ‘special visitor’ per resident. Looking to the future, and the likelihood of other serious infections, they also sensibly and robustly put forward the case for investment in the built environment to minimise the risks involved in visiting. They make a powerful case for the need to look at what can be done to make visiting possible, rather than imposing the simple knee-jerk reaction of banning something as fundamental and crucial as contact with loved ones for the most vulnerable members of our society.

In our 2009 report, we similarly highlighted how minimising risks often means forgoing benefits and restricting freedoms in ways that can be highly detrimental to a person’s well-being. We went on to recommend that ‘risk assessments’ should be replaced by ‘risk-benefit assessments’ in order to highlight the importance of benefits which may be lost in the attempt to reduce risk, and ensure these are properly taken into account. We also highlighted the (self-evident but sadly often overlooked) fact that people with dementia have human rights just like everyone else – and called upon the Equality and Human Rights Commission to issue guidance on what ‘reasonable adjustments’ to support life with dementia might look like. There is currently a legal challenge on human rights grounds to the guidance on care home visits – and the Equality and Human Rights Commission has publicly called on the Government “to make sure that protections are proportionate, measured, and rooted in science and the law”. Taking steps to ensure that all people living in care homes are able to maintain meaningful contact with at least one person close to them – for example by prioritising testing and PPE for designated visitors – must surely be the absolute minimum required to respect the human rights of care home residents.