Marcus Stevens is a general practice trainee based in Bath, Somerset and has recently returned to NHS training following three years working in west Africa. His interests include global health, end of life planning and healthcare system design.
As the COVID-19 pandemic enters its fifth month there is increasing focus within the UK on care home deaths. Latest figures show almost 5000 deaths were registered in the week ending 10 April, double the number a month prior. However, only 826 of these were recorded as being COVID-19 related. This discrepancy has been blamed on lack of testing and difficulty accessing other acute services, but in care homes around the country nursing staff and GPs are seeing the unexpected effects of the virus on residents.
Whilst the release of data on care home deaths and the availability of testing may have been delayed, the vast majority of homes implemented control measures early, primarily by limiting all but essential access. I recall a GP colleague returning from a local care home incredulous that she hadn’t been allowed in and had instead been instructed to call via video link. Doors were closed as well to all family members other than for patients deemed to be approaching their final days.
A few weeks into lockdown I worked through a virtual ward round of issues: residents with rashes, new swallowing concerns and lots of chesty coughs. There were three patients, however, whose presentations were out of keeping with the usual. The nursing staff reported only that each was lonely, sad even, and certainly not themselves. None had any signs of infections and all had normal observations. All three had diagnoses of cognitive impairment and all had very close and supportive families who visited almost daily.
We pondered what to do and as a GP trainee, I spoke with my trainers at the practice. I encouraged the staff to provide as much social support as possible in place of family visits, suggested facilitating video contact with families wherever possible and hoped for the best.
Over the following weeks these three patients, each suffering from suspected COVID-19 induced loneliness, followed a different course. Becoming increasingly withdrawn, two began eating less and sleeping more. Signs of the dying process prompted difficult conversations with families and visits were reinstated. Unfortunately, one patient continued to deteriorate and passed away while the second, once reunited with family, brightened quickly and was soon back to her usual self. In comparison our third patient followed a less dramatic course more consistent with a developing depressive episode from which he is still suffering.
Loneliness, which describes an individual’s subjective experience of social isolation, is associated with a range of poor health outcomes. Data from the English Longitudinal Study of Ageing have shown a relationship between loneliness and cardiovascular disease, dementia and frailty. Although interesting, these long-term population level data showing an increased risk of developing ill health over decades didn’t help explain the rapid changes I was observing.
I went looking for data showing a relationship between acute-onset loneliness and mortality rates, something that might mirror what I was seeing in the care home. It quickly occurred to me, however, that no such trial could possibly make it through ethics approval. However, a natural corollary did exist, and it offered the chance to understand better what I was seeing amongst this group of residents.
Bereavement may be defined as being deprived of something or someone and is considered one of life’s major stressors. A Danish study showed higher all-cause mortality amongst 390,000 bereaved individuals throughout the study’s 17-year follow-up. The relative mortality was highest in the first month after loss, with persons twice as likely to die compared to matched controls.
The lockdown has affected us all in myriad ways but I’ve yet to hear it compared to a bereavement. We understand why we can’t see friends and for now family Sunday lunch has been replaced by Zoom calls. However, in individuals with dementia this level of understanding may not be possible. For those suffering deficits in memory, cognition and problem-solving, a sudden lack of contact with loved ones is likely to manifest in a more severe and unexpected manner, with far graver consequences.
The global pandemic is set to exert a profound impact on all parts of our society but amongst the warnings of ventilators, masks and recession have we triggered an epidemic of loneliness amongst our nation’s most vulnerable?