The new care normal
The First Minister published the Scottish Government’s strategy for coming out of lockdown on Thursday and encouraged a public debate on the issues which the document raised.
For the social care sector coming out of lockdown is likely to be very challenging. If as it is envisaged that there will be a phased and incremental removal of restrictions it is highly likely that this will mean that formal care settings will be amongst the last to be back to familiar patterns of behaviour and access. Even when this happens it is likely that social distancing will continue for some time and that staff will be required to continue to utilise a high level of PPE. It is likely that there will need to be increased staffing levels in a sector which has most recently been faced with acute staffing pressures and significant economic instability. But over all these very important and genuine concerns there should be a heightened awareness of the impact on those who are the recipients of social care and support.
Over the last two weeks in particular it has become clear that the levels of distress, of emotional and psychological harm, upon those living with dementia in our care homes and in our communities in Scotland are becoming more and more acute and worrying.
The ongoing focus in care homes in particular has been quite rightly the sustaining of life. This has led to the development of guidance which has meant that for 6 weeks our care homes have been in effective lockdown with only rare visits at the end of life and in the earliest couple of weeks for one named individual per family in situations of real distress. I fully understand and appreciate that concomitant to this have been clinical and infection control measures which have advocated self-isolation and social distancing; the end to the use of communal spaces and effectively the confinement of individuals who have been symptomatic.
Such ‘emergency’ measures have been justified as necessary and proportionate in order to achieve the legitimate aim of the maintaining of life. But I now believe that six weeks on we need to consider and actively debate both how long these restrictive measures can continue but also whether they are indeed the most proportionate and human rights-based interventions.
My personal concern is that we need to get a better balance between proportionate restriction of freedom of movement in order to attain infection control and a diminishing of normal life to the extent to which it is causing psychological and physiological damage e.g. through increased falls, impact on nutrition, effect on hydration, increases in delirium state etc. I am concerned that too many assumptions have been made in the adoption of infection control practices which fit an acute hospital-based environment without a full appreciation of the nature of care homes and of the population that is supported within them. I am fully aware that there is growing epidemiological evidence around the nature and rate of transmission of Covid-19 in care homes and that we are some distance from the peak of the challenge. However, we have to more fully recognise specifically that the levels of acuity in care homes are exceptionally high and in particular that the vast majority – probably about 90% – of residents have some form or another of dementia.
Lockdown from the perspective of someone living with dementia has been in many instances quite frankly, simply hellish. Staff have spent a lot of time reassuring, being present, reminding and reaffirming what individuals about what is happening. They have supported people to understand why family have not visited and have used technology to help people to remain in contact. But sadly, such measures have only worked for a minority. For many more this has been a maze of confusion, distress and very real emotional trauma. The familiarities of touch, eye contact, physicality and presence have been denied them. The rhythms of routine so fundamental to someone living with dementia have been replaced by strictures and detachment which is causing real harm. Despite all the best efforts of nursing and care staff, care homes even where there have not been cases have changed.
Outside in the communities we are hearing equally distressing stories of individuals without family support who are immensely confused and disturbed by the changes in the pattern of their encounters with homecare staff, with neighbours and with friends.
I am convinced that we need urgently, not just as a care sector but as a whole society, to think about how we are going to support the ‘new care normal’ in care homes and in communities.
If we are to continue with some form of restricted access for some time then we need to appreciate that a care home is not an institution or a unit – it is someone’s home – and we need to get back to that understanding as quickly as possible. We need to re-connect care homes to families and vice-versa taking appropriate precaution but balancing risk against the reality that for many individuals their lives are greatly diminished and risk being fore-shortened by current measures. We need to create a real army of volunteers and others prepared to support the added demands of staffing which will be necessary with new models of care which need to maintain their human touch and person-led focus. Critically we need to urgently move from self-isolation to safe social distancing within the confines of the physical environment of a care home supporting re-connection and re-membering.
Within the wider community I am also concerned that some of the narrative which we are hearing in the media is presumptively assuming that there will be the use of age restrictions in our exit from lockdown, so for instance those over-70 may be in lockdown for a longer period of time. Just as withdrawing treatment based upon age was unacceptable as an ethical choice so I would contend such restrictions would be equally unacceptable. Setting different rules based on age is a blatant form of discrimination. It is one thing to seek to shield those most at risk because of underlying health conditions it is quite another to use blanket catch-all prohibitions.
The ‘new care normal’ needs to be molded by families and residents, citizens and carers, clinicians and professionals, so that together we get the right balance between risk and life. We urgently need to have this care conversation as part of the national conversation the First Minister started on Thursday. Put simply there is a difference between existence and living and for many living with dementia at the present time that balance seems not quite right.