Coronavirus – don’t forget about the carers!

Dr Shibley Rahman is an academic physician interested mainly in dementia and frailty. He tweets at @dr_shibley

We live in the worst of times and now, perhaps the very worst of times.

The thing, I’ve always found, about being a ‘carer’ is that you don’t realise that you’re a carer until you’re quite advanced into the job. Nobody gives you any training for it. Instead, being the son of a wonderful mother has taught me above all that caring is about fully understanding a person, not seeing him or her as a list of diseases or problems. For me, I’d argue that there is no better ‘job’ than having an opportunity to meet the ‘needs’ of someone you love.  I propose that family carers are not only on the ‘frontline’ or ‘shop floor’, but also save the economy a huge amount of money. Too right: let’s clap for carers.

In my world, I’d like to think I bring value to society. Little things make me happy, like making sure that mum’s blister pack is organised every month on time. My mum is a whole person, but happens to live with severe frailty and advanced dementia. The caring experience has taught me a huge amount that I never learnt from my training in medicine. I think my ‘story’ or ‘experience’ is valuable though; there’s too much of an assumption that doctors can’t be patients or carers. Now, with my clinical researcher ’hat’ on, I often find myself perplexed that the research workstreams for the ‘geriatric giants’ can for so much of the time look and feel entirely separate and divisible.

Now to the matter at hand. With my specialist knowledge, I will be terrified if mum becomes infected with SARS novel coronavirus (“SARS_nCoV”). The ‘bummer’ is that SARS_nCoV  can be highly infectious, even if people themselves are asymptomatic. I reckon it will first present itself as delirium. I will not be able to have access to anything sophisticated. I don’t have a thermometer. I don’t have a pulse oximeter. I will be ready to identify delirium as a presentation, perhaps. I may suspect but not know that it was due to SARS_nCoV, unless something obvious is happening (such as the sufferer turning blue or short of breath).  She might not mount a temperature. She may not even present with a persistent cough. Needless to say, I personally don’t have access to a powerful vaccine or monoclonal antibodies, and, as such, the medical care for mum is left to medical professionals other than me, my friends or family. I’m dreading the whole thing – as I know from the past that delirium is a highly personal and distressing experience for all involved.

What though I have observed is this. I think it’s important to build up ‘assets’ (or ‘protective factors’) or ‘resilience’ in a person. Actually, I don’t like these clunky terms at all, but I think that it’s important to pay close attention to fundamentals, such as sleep, eating, drinking, moving, hygiene, skin, communication, for example.  Whilst semantically ill health is merely not the absence of bad health, I think building up a buffer against threats to health for mum (and me) is vital. I liken it to ensuring that your mobile phone can be recharged, when it is running out of ‘juice’, to prevent it from malfunctioning on you. That reminds me to remind you, that you need to look after carers’ health and wellbeing in this demanding time too.

At the more academic and esoteric level, for me, there is clearly a complicated relationship involving frailty and dementia, and I feel personally that delirium represents the intersection in these two.  Frailty, dementia and delirium may indeed involve common risk factors and underlying mechanisms, as reviewed elsewhere. For the last two years, I have developed an intense research interest in delirium, and I look forward to publishing my synthesis later this year indeed on my birthday. I have published on integrated care in both dementia and frailty previously – here’s for example the book review from Dr Emma Bray of a book on the ‘basics’ of dementia I did with Prof Rob Howard on the BGS blog. I see the field of geriatrics as a whole, therefore, and I’m pretty certain that the next few decades in geriatrics will see much greater clarification about the interactions between physical, social, cognitive, emotional and functional health and wellbeing.

To be clear, I can’t emphasise enough the need for a “holistic” perspective on patient care. For example, sometimes it seems as if everyone is claiming to do ‘shared decision making’, but not much is happening in reality. Much of medicine can seem to be ‘process-driven’, and I accept that, of course, but it could be much more ‘people-driven’. I think the crosstalk between the lived experience of patients and carers, services and research is incredibly important, and still has vast potential to be fed into quality improvement of core geriatric services. I don’t wish though to understate the importance of acute medics’ ‘firefighting’ against problems, often when the horses have well and truly bolted.

I took part in a global Twitter chat on delirium, palliative care and SARS_nCoV yesterday morning, purely serendipitously as Prof Meera Agar from Australia happened to be on my Facebook timeline.  This area is, of course, highly relevant to me as I have taken time to consider, in a peaceful way, what a ‘good death’ might be for mum, and what ceilings of care might be sensible. The practical problem about a ‘good death’ in such troubled times as these is a human instinct that ‘more could have been done’  especially if services are “underdoctored and overstretched”. I suppose this is essentially the ‘anger’ part of Kubler-Ross’ grieving process. But I find comfort, personally, in the exemplary writings of Dr. Kathryn Mannix. I had in fact been driven to think about these pivotal issues some time ago when mum first came under the jurisdiction of clinical specialist nurses in palliative care.  Many sources of information have helped me ‘control the uncontrollable’ – not least the local GP and community pharmacists. All other services, local to me, have been progressively stripped away due to austerity over the last few years.  Their resilience has been diminished.

The practical reality of being a carer is that events overtake you very fast. Having had experience of this, I know how to spot delirium quickly. A test used to identify delirium, with high sensitivity and specificity, the 4AT, has been validated in the hospital setting. This test is useful for identifying delirium and having it documented. But I know within hours (preceding the florid presentation by days), when “something is not right”. To put it simply, mum is not mum with delirium. Let’s face it: there are very many reasons why certain older people will be a sitting duck for delirium. On top of the underlying frailty, there’s also the potential for electrolyte imbalance, for example through diarrhoea or dehydration. Then there’s the infection (and risk of sepsis) itself; and, with a chest infection, there’s the problem of hypoxia contributing to the delirium. Furthermore, there’s also the issue that an underlying long-term cognitive impairment lowers someone’s cognitive reserve, so it’s easier to develop delirium. Delirium under such a framing is the result of a pathological process on a brain showing less cognitive reserve. Knowing what to expect with mum, from the theory, makes it far less stressful for me: as Sir Francis Bacon is attributed to have said, ‘knowledge is power’.

I am now basically anticipating a complete nightmare for which I’m not ready.  I am therefore on the frontline too. I am amazed that paid carers, travelling on vastly restricted services, are making do with makeshift kit often nowhere near the level of NHS ‘personal protection equipment’. I find it hard to believe that you can care for anyone at a distance of two metres.  And there’ll have to be some pretty hardcore decisions made first about what mum would achieve in a hospital admission with her ‘ceilings of care’. I am fortunate enough to be a carer with medical knowledge, some of it being very detailed in geriatric medicine, but knowledge can be an unhelpful thing. I find novel coronavirus itself terrifying, not least because of acute respiratory distress syndrome itself, but also the potential of complications such as delirium which might through neuroinflammation lead to long term cognitive impairment (and here initiatives such as DELPHIC will be pivotal.)

Ultimately a fear I have, in addition to mum’s fate, is contemplating a hospital admission. This is always stressful for me, but has always been life enhancing for mum. What happens after the admission, if mum survives, is equally important. I  anticipate that proper scrutiny goes into following the physical and mental function of people who’ve merited hospital admission over time, considering the usual suspects such as discharge arrangements  or future outpatient clinics. The transition from independence and dependence needs to be identified clearly and not ‘lost to follow up’.

Finally, I should like to mention that we are ‘all in it together’. It is really crucial now, even more so than ever, that we put aside our differences, and that we all work together. There needs to be a trust of each other, which means that there is continuity of care. Carers like me find it very difficult to relinquish our responsibility when a close one is admitted to hospital. This is bound to be more traumatic, potentially, with massively restricted visiting hours.

But - I wish you all well. I hope some of this is useful, but it is only one individual perspective. I do not pretend to be representative in any way.

This is either now the end of the beginning, or the beginning of the end.