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Carers have to be valued, not treated as an inconvenience


phtoo of food away from patient























I think before a physician comes to the conclusion that his or her patient has had ‘an acute deterioration of dementia’, he or she should make some effort to get a clear history of the time scale of events.


It amazed me how I was not asked at the Royal Free by any of the admitting physicians what the timescale of my mum’s decline in communication, behaviour or mobility had been. This was not a focal problem in the acute assessment and treatment area, but has been throughout the ten day admission so far.


I genuinely do wonder how useful, if at all, junior doctors are in the daily ward round of my mum with delirium, on a background of dementia. A message to you all – it is not a big success to say that my mum’s chest is clear, and proclaim she is medically fit for discharge, when she has been stuck in bed for the whole admission, her food and drink intake has fallen off a cliff, and she occasionally talks complete mumbo jumbo.


The ward round model is totally unsuited for managing delirium. The junior doctors do not involve the carers in any sort of history, and nor do any of the staff on the ward. There is absolutely no discussion of the management, including calming techniques if your mum happens to be agitated, the avoidance of chemical or physical restraints, orientation in time and place, and sleep hygiene, for example. No discussion at all.


It’s almost as if delirium was never taught at medical school to any of the staff in the hospital. To be honest, I have been totally amazed how my mum, who had suddenly fallen asleep during the middle of the day with hypoactive delirium, would have ‘nothing wrong’ in the eyes of the healthcare assistants.


It’s not enough to give carers passports, although that helps a lot. Carers need to be there to be as far as possible  on the ward round, to know what medications have been crossed off without the patients’ or family’s knowledge, to know what the rough plan is, and to be able to ask questions.


It’s often the case that healthcare assistants aren’t able to feed patients with dementia. The reason for this is that it’s not just the actual food which counts, although that’s a big part of it, but also the entire mealtime environment, including how comfortable the patient feels about eating the often dire hospital food. And often the food is dumped miles away from the patient.


And if, like mum, her mobility and independence had relatively suddenly dropped off a cliff, the therapists need to know this. I’ve had absolutely no discussion or goals set by the therapists of what they hope to do with mum. Mum is a frail lady who has experienced a number of shocks, viz change of environment, weight loss, delirium, dementia, infection, dehydration, and there’s been no discussion of her frailty despite this apparently being a priority of the NHS.


There has been no discussion of her management of dementia, with her cholinesterase inhibitor having been crossed off, nor her wider needs beyond discharge. The whole thing is entirely pitiful, as if the two long term conditions my mum has been living with in the community are entirely irrelevant to this hospital admission.


And her meds for osteoporosis have been crossed off. And for her high blood pressure.


I have often thought that doctors don’t want to communicate with carers there, often because they don’t want them interfering with their ill-informed medical plans. This is hugely insulting to those of us who are 24/7 trying our best for our loved ones.


It’s not just about having a dementia friendly clock, or reminiscence room. Carers have to be valued, not treated as an inconvenience.



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