Margaret spent six weeks in hospital and another seven in a nursing home before she died.
She had been diagnosed with vascular dementia in 2019 but was “social, lively” and “never missed a social evening” at her independent flat in West Yorkshire before falling and breaking her pelvis in February.
The 86-year-old was taken to his local hospital by ambulance and had already been moved to five different settings in the first 36 hours.
Her son Pete, 66, told Sky News: “I was shocked when I saw her because from a woman who could sit and chat about anything, her speech was completely garbled and incoherent.
“And that was just after 36 hours of not knowing where she was.
“I said to the nurses ‘I think mum is suffering from delirium’ and there was a six foot poster outside the ward about how to recognize delirium but nobody seemed to recognize it.”
Delirium linked to ‘accelerated cognitive decline’
Delirium is a state of sudden confusion and disorientation, affecting speech and other basic functions.
It can be caused by infection – one of the main reasons dementia patients are admitted to hospital – along with falls and dehydration.
People with dementia are generally six times more likely to experience delirium as hospital patients than those without the disease, according to research from Oxford University.
Professor Paresh Malhotra, a neurologist and researcher at Imperial College London, says one or more episodes of delirium can be “associated with accelerated cognitive decline” in people with the condition.
“There may well be a bidirectional relationship between delirium and dementia,” he says.
“People with dementia are more likely to develop delirium – and an episode of delirium itself is likely to accelerate the dementia.”
He says that some studies have shown that this “speed” is due to inflammation – either in the whole body or in the nervous system itself.
As a result, he adds: “It is important for people with dementia to be discharged from hospital as quickly as possible when it is safe to do so.”
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Dementia symptoms are unpredictable and get worse over time.
But the NHS says that “with the right treatment and support, many people are able to live active, fulfilled lives”.
In contrast, Kerry Lyons, consultant admiral frailty nurse for the charity Dementia UK, describes the negative impact being in hospital can have on someone’s symptoms.
“Dementia patients enter a strange environment, with noise throughout the night, so their sleep is disturbed,” she says.
“They can withstand multiple department transfers out of hours, being moved from place to place.
“There’s often a breakdown in communication and the right information doesn’t always come with that person about what their normal baseline is.
“All of these factors contribute to delirium and cause a reduction in cognition, more confusion and more distress.”
People settle on “much lower baseline”
Pete describes his mother’s time in the emergency room, an inpatient ward, an aged care ward and finally a medical step-down ward, saying her experience in hospital was “horrendous”.
“It was very difficult to get clinical information – most people would refuse to talk to me on the excuse that they were too busy, so I had to get information about her from other patients.
“Nurses walked by her bed and she raised her hand to get their attention and they just said ‘bless you.’
“There was no stimulation – sometimes she would have an electric clock to look at and that was it.”
Kerry says lack of stimulation and physical movement in a hospital ward are major problems for people living with dementia.
“With dementia, it’s really important to maintain neuron-to-neuron connections by stimulating the brain every day – if you take that away, you’ll find deterioration in cognition.
“And it’s not just neurological, if you don’t get a patient out of bed and on their feet in time, from a muscle mass standpoint, their mobility can go very quickly.
“What we often find is that people settle on a much lower baseline.”
Lisa, from Telford, had a similar experience with her mother Audrey, who was diagnosed with Alzheimer’s disease in 2018.
Before she was hospitalized in October 2020, she describes her as “feisty”, “actively involved in her grandchildren’s lives” and able to walk for about 10 or 15 minutes at a time.
“The conversation was difficult and interesting at times – but we went out for cake and coffee – it was nice to still have those moments,” she tells Sky News.
“We weren’t even close to thinking about a funeral for her.”
“What should have taken five years took 10 weeks”
Lisa was her mother’s full-time carer and the family – her father, three children and partner all lived together until a flood in August that year left Audrey, 81, in a care home.
In October, the last Care Quality Commission (CQC) report showed there are 165,000 vacancies in social care and 132,000 across the NHS.
Inspectors found that these deficiencies have left both systems “locked and unable to function effectively”.
Lisa (46) says that after she stopped eating and drinking properly at the care home, she was taken to hospital with severe dehydration.
She claims she was moved wards in the middle of the night, there was little reference to her dementia, and after three weeks in hospital she had “really gotten worse”.
Asked if she thought it had hastened her decline, she says: “In 10 weeks in hospital and care homes, she did what probably should have taken at least five or six years.
“I feel very strongly about that ‘fast forward’ or ‘springboard’ effect.
“She had no idea where she was and I’m not convinced she knew who I was until I explained it to her when I visited every day.”
At the start of her third week in hospital, Audrey was placed on a discharge ward and staff said she was transferred to a care home for rehabilitation services that day.
But the discharge was delayed for almost a week, says Lisa.
“When she got to the care home they felt she was ‘end of life’. She lasted six days there before she died.
“If they had accepted her when they were supposed to five days earlier, I think it would have been a different story.”
The nursing trust told Sky News they are “working closely with our partners to ensure patients can be discharged as soon as possible”.
“I expected her to be able to go home”
October’s CQC report also found that only two in five hospital patients are able to leave hospital when they are medically fit due to a lack of social care.
Pete says he expected his mother to be discharged home with a wheelchair and physical therapy exercises after a few weeks.
“She would have been able to live – and carry on with her gregarious life – before she lost her connection.
“But it didn’t work out that way because of the lack of attention to her personal needs and the fact that she wasn’t able to express how she felt to anyone.”
Margaret suffered a grade four bedsore while in hospital and a serious case review has since found lapses in her nursing care and a failure to follow the correct protocols correctly.
She was discharged to a nursing home on 1 April and died on 24 May.
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The nursing trust told Sky News it was offering its “sincere apologies and sympathies” to the family.
The inquiry “acknowledged that errors occurred and treatment fell below the standard we aim to provide” and “to which Margaret was entitled”, it said in a statement.
A “number of actions, including rigorous audits and an increase in training were identified and subsequently implemented to make improvements in patient care,” it added.
The government has not yet published a 10-year plan
Kerry, from Dementia UK, says the “current landscape” of dementia care within the NHS is “very difficult”.
“We work in a very stretched workforce with very limited resources.
“I am a daughter supporting my mother who is living with Alzheimer’s disease. And I know that the local hospitals if I need to go with her – have limited dementia services.”
There are almost 900,000 people in the UK living with dementia – equivalent to 7.1% of over 65s.
This is expected to rise to one million by 2024 and 1.6 million by 2040 as the population ages.
At any one time, around one in four hospital beds are occupied by someone with the condition, according to the National Institute for Health and Care Excellence (NICE).
To help patients and their families, Dementia UK recruits admiral (specialist dementia) nurses to work in hospitals, care homes and the community.
They try to avoid preventable admissions where possible, but when patients go to hospital – make sure their needs are met, risks are minimized and discharges are quick and well planned.
Dementia UK and other charities such as the Alzheimer’s Society are calling on the government to deliver its 10-year plan to tackle dementia – promised by then health secretary Sajid Javid “later this year” in May.
A Department for Health and Social Care spokesperson told Sky News: “We want a society where every person with dementia, their families and carers get high-quality care in the right place, and we’re providing £500 million through our Adult Social. Care Discharge Fund to speed up the safe discharge of patients who no longer need to be in hospital.
“The Government made £17 million available to clinical task forces last year to tackle dementia waiting lists and increase the number of diagnoses, and we have committed to doubling dementia research funding to £160 million a year by 2024/25.”