When I’m 65. The precarity of delirium. #WDAD2023

I’m not sure that I ‘understand’ delirium, frailty or dementia.

I think few do.

Before the person I ended up caring for 24/7 was officially diagnosed with both frailty and dementia, I had been aware of the magical significance of the number ’65’. Rather like the number 42 being the meaning of life, as attributed to the iconic ‘Hitchhiker’s guide to galaxy’, 65 remains magical for the cut-off between neurology and psychiatry when it comes to dementia services.

I’m old enough to remember when the consultant in Cambridge, whose firm I was once in in 2001 as a house officer, mooted there should be a defence of the term ‘department for medicine of the elderly’. At first it might seem inappropriate you compartmentalised older adults this way, after all 61-70 is very different to 71-80 or 81-90. On the other hand, older people do have specialist needs which come with age.

I came across by relative accident the word ‘precarity’ as applied to frailty from a scientific paper. I think of ‘frailty’ akin to ‘vulnerability’, but the word ‘precarity’ appears bolder than that. It encompasses a meaning of being precarious or uncertainty. In all my time being a family carer, I was struck by the fact that the prevailing wind would change at an instant.

Amanda Grenier’s analysis of precarity made me wonder why older patients with delirium are quite so precarious politically. Grenier cites the dictionary definition:

“Accordingly, ‘precarious, adj.’ is defined as both ‘a right, tenancy’ (that is, something held or enjoyed by the favour of and at the pleasure of another person) and a condition whereby one is ‘vulnerable to the will or decision of others’. The uses of the concept ‘precarious’ range from ‘a line of argument, inference, opinion, etc. [that is] insecurely founded or reasoned, doubtful, dubious’, to something ‘dependent on chance or circumstance; uncertain; liable to fail; exposed to risk, hazardous; insecure, unstable’, to something ‘subject to or fraught with physical danger or insecurity; at risk of falling, collapse, or similar accident; unsound, unsafe, rickety’ (‘precarious, adj.’, nd).”

Governments will argue that they are spending more and more money on care, but it seems that the money being spent is less because the money has to be stretched with such increasing demand. It is impossible to avoid a discussion of how delirium care can be managed successfully with such powerful constraints.

Grenier again,

“The concept of precarity highlights how decisions made about frailty and care are thus political. While the implications of neoliberal priorities and practices are most obvious on marginalized groups who no longer have access to the services they require, an analysis carried out through the lens of precarity also reveals how political priorities and particular responses create ‘care gaps’, and thus how the concept and practices related to frailty operate to reduce and limit access to services and supports. “

If anything, care at home, with an army of unpaid family carers like I once was, or more strategically delivered care, at home will come under increased scrutiny.

It is possible to ignore someone who is delirious, in terms of person-centred care, especially a hospital patient who is sleeping all the time. This is fraught with encouraging risks – such as pressure sores or blood clots (both of which can exacerbate a delirium). Management of a delirious patient to all intents and purposes can be an outpost of veterinary medicine unless you make an effort to involve the patient or carers, or to acknowledge the distress.

You could then find one minute that things were going well. The person you cared for seemed to be sleeping OK, eating and drinking well, moving around OK and reasonably attentive. But then the next morning she could be a totally different person, even accounting for the dementia.

Personal care was now impossible. She didn’t feel like taking her breakfast. And she wanted to sleep a lot even having had a good night’s sleep.

Frailty for me brings with it a sense of complexity in a way I simply don’t understand. It doesn’t surprise me at all that with increased frailty there appears to be a greater prevalence of delirium. Living with frailty is undoubtedly a new normal, but I cannot comprehend how it is possible to live well with delirium.

Delirium seems to mean that the person has difficulty recognising himself or herself, or others, and might talk incoherent rubbish. There is as yet no single bullet to treat this condition, in the same way you might give an antibiotic for pneumonia or anti epileptic for epilepsy.

This is in large part due to the fact that delirium occupies a position of mystery. We know remarkably little about the neural basis of it – what turns it on (other than precipitating and predisposing causes), what keeps it going, and what turns it off. The neural substrates remain to a large extent a mystery, and remain a roadblock to its effective medical treatment.

Delirium seems to ‘recover’ of sorts – but how many people truly recover is a bit of a known unknown. Inroads are being made here.

I don’t deny delirium prevention can be effective through good healthcare, for example attention to mobility, hydration, pain relief, and so on. But what brings it on suddenly in a person living with dementia is scary. We can do our best to understand it for non-hospital settings as well as hospital settings, but there are major holes in our knowledge still. There is yet to be done a conclusive trial as to whether delirium prevention can lead to dementia prevention, although this possibility seems promising given observations such as the fact recurrent delirium episodes might be related to greater cognitive impairment.

The ‘living well with dementia’ narrative was obscured with the fact that it was introduced at a time which coincided with worldwide financial austerity due to a global financial crash. The search for a magic bullet seemed like the perfect excuse, arguably, to strip down the welfare state, such that ‘care’ and ‘dependency’ became dirty words.

Being delirious is, whatever spin, a very precarious state. Without oversight, there is a possibility you could wander off and cause havoc. That’s why laws exist on mental capacity and deprivation of liberty to act as necessary and proportionate measures.

The precarious state in delirium without intervention can become a self-fulfilling doom cycle. In ways we do not really understand, frailty can lead to delirium. this delirium can lead someone to stop eating and so on, lose weight, stay in bed become increasingly frail and reconditioned. And for some the delirium might be linked to some cognitive damage.

I’ve never thought that certain admissions can be completely ‘avoided’. Nor do I think that dementia in the older person is as nice and tidy as dementia in a younger person, for example with a single gene defect.

An inability to spot or detect delirium, in whatever care setting (even at home, in a hospice, in a care home or in a hospital) is something all practitioners should be aware about – like chest pain. We know that delirium somehow adds to the chances of mortality in a way not simply explicable by the medical complications. Greater awareness and attention to care, as well as a research strategy, is needed.