Standards of hospital care for people with dementia made the news last week, with an investigation by the Alzheimer’s Society showing shocking variations in the quality of care being given, prompting the charity to launch their ‘Fix Dementia Care’ campaign.
Given that this time four years ago my father was still alive, and had been the recipient of some extremely variable hospital care in the years prior to 2012, it is a source of huge concern and sadness for me that many of the problems we experienced continue today.
The Freedom of Information requests that provided the substance for the Alzheimer’s Society investigation highlighted that people with dementia were:
- Falling while in hospital
- Being discharged at night
- Being marooned in hospital despite their medical treatment having finished
Whilst my dad thankfully never had a fall whilst in hospital, being discharged at night was something he experienced on almost every inpatient stay. The reason given in his latter years with dementia when he was completely immobile was that he needed transportation via ambulance, and this was most easily accomplished at night when paramedics were less busy. Never mind what dad might have wanted of course.
I suspect the fact that he was being discharged to a nursing home, with staffing 24 hours a day, was also a somewhat convenient excuse. It was, however, a horrible experience for dad – these events often came in winter, and being moved out into the cold night air when he should have been tucked up in a warm bed was, in my view, a particularly sadistic form of ‘care’ that would leave him upset, disorientated and confused.
Being marooned in hospital was also a harsh reality for dad – at one point he spent three months in hospital (despite being medically fit for discharge) whilst funding was arranged for the care home placement that his doctors said he needed. During this time dad lost half of his body weight and the NHS picked up a huge bill for his care – a no-win situation for all concerned.
Alongside collecting data from Freedom of Information requests, the investigation by the Alzheimer’s Society surveyed people affected by dementia. They found that 92% of those individuals felt that hospital environments were frightening and only 2% felt that all hospital staff understood their needs.
Reading this led me to reflect on how my dad might have responded to his hospital experiences. I’m certain he found the hospital environment pretty unpleasant, from the noise, smells and routines of hospital life, to difficulties in finding facilities like the toilet and having opportunities for stimulation, occupation or activity during the long days as an inpatient. Only on one particularly ‘fortunate’ stay in hospital could I honestly say that dad had a better experience – he had his own room and staff found him a CD player. We brought in CD’s for dad and his mood changed completely. Simple stuff, but so effective.
Sadly, however, meeting staff who understood dad’s needs wasn’t the norm. During the latter years of dad’s dementia when he had dysphagia (swallowing problems), hospital staff refused to allow him to have food or to help him eat it, mistaking his hunger cries for pain and writing him up for morphine. This was a ‘mistake’ that could be interpreted as covertly putting him onto an end-of-life pathway by administering a drug that he didn’t need and could have shortened his life with an inappropriate dosage.
Furthermore, this ‘mistake’ was only rectified because dad had a family visiting him for eight hours a day, speaking up for him, and bringing him food and drinks and helping him to consume them. We would also assist him with his personal care – without that help a man who liked to be clean shaven would have begun to grow a beard. But what happens to people without this family support? Do they get inappropriately medicated, starved, dehydrated or left dirty, uncomfortable and neglected? The variations exposed in the quality of hospital care suggests that this is likely to be a reality for some people with dementia who are inpatients today.
Despite the many difficulties we encountered with hospital care, however, I don’t want to paint a completely bleak picture. There were good experiences, staff who genuinely cared and understood what dad needed, as well as providing great support for us. This was particularly evident in dad’s last stay in hospital when he’d been rushed in with an aspiration pneumonia.
His care was excellent, with the doctors treating him taking a lot of time and trouble during their interactions with dad and in their care for him, alongside explaining things to us and giving us time. Our decision to seek end of life care for dad from a care home wasn’t because we were unhappy with his hospital care, but rather that the hospital couldn’t offer the homely environment or privacy we felt he needed as his life approached its final stages.
So, how do we ensure that hospital care is a high quality experience for every person with dementia? In my view providing comprehensive dementia education for all hospital staff (which Health Education England are tasked with delivering) and making environments more dementia friendly will only go so far.
The root of much of what is wrong stems from compartmentalisation. Hospitals work best when a person is admitted with one condition and treated for that condition. However, people with dementia often live with other conditions alongside their dementia, and are usually always admitted into general hospitals not because of their dementia but because of infections (mostly notably chest and urine infections), another long-term condition (like diabetes, heart disease or asthma) that hasn’t been well managed, or because they’ve had a fall in their own home or in a care home.
This was never more evident for us than when dad needed hospital care during the last four years of his life when he had dysphagia. Treating a gentleman with dysphagia who also had dementia and all the challenges that brings around communication was an alien concept for most hospital staff, with approaches varying from the starvation I mentioned above, to trying to force a tube through his nose into his tummy rather than orally proving food (a tube he promptly pulled out), and providing ice cream (that quickly melted) as a suitable ‘thickened’ food for him (which in reality was as liquid as the water out of the tap).
What is needed to combat these issues is more holistic, joined up care that sees each person as a whole human being and treats them as such regardless of how many problems they have with their health and which of these problems has led them to be hospitalised. This approach needs to be combined with a comprehensive 24/7 service that enables individuals to access the care and support that they need when they need it. People can become unwell on any day and at any time – prompt treatment and, crucially, the availability of care and support when they are ready to leave hospital, is vital.
Furthermore, if hospitals that are underperforming (as highlighted by the Alzheimer’s Society Freedom of Information Requests) learnt from the hospitals who are providing some of the excellent care that the Alzheimer’s Society found, these huge variations in care would become a thing of the past. It heartens me that some outstanding care does exist, but I remain saddened that so little seems to have improved since my dad was living with dementia. Clearly we still have a lot to learn.
Until next time…