Margaret spent six weeks in the hospital and another seven in a nursing home before she died.
She had been diagnosed with vascular dementia in 2019 but was “gregarious, lively” and “never missed an evening out” in her independent-living West Yorkshire flat before falling and fracturing her pelvis in February.
The 86-year-old woman was taken to her local hospital in an ambulance and in the first 36 hours she had already been taken to five different locations.
Her son Pete, 66, tells Sky News: “I was shocked when I saw her, because for a woman who could sit and chat about anything, her speech was completely garbled and incoherent.
“And that was right after 36 hours of not really knowing where I was.
“I told the nurses, ‘I think my mother is delirious,’ and there was a six-foot sign outside the ward about how to recognize delirium, but no one seemed to recognize it.”
Delusion linked to ‘accelerated cognitive decline’
Delirium is a state of sudden confusion and disorientation, which affects 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 hospitalized patients than those without the disease, according to research from the University of Oxford.
Professor Paresh Malhotra, a neurologist and researcher at Imperial College London, says one or more delusional episodes may be “associated with accelerated cognitive decline” in people with the condition.
“There may well be a two-way relationship between delirium and dementia,” he says.
“People with dementia are more likely to be delirious, and an episode of delirium itself is likely to accelerate dementia.”
He says that some studies have shown that this “revving up” is caused by inflammation, either throughout the body or in the nervous system itself.
As a result, he adds: “It is important that people with dementia are discharged from the hospital as quickly as possible when it is safe to do so.”
Dementia symptoms are unpredictable and get worse over time.
But the NHS says that “with the right treatment and support, many people can lead active and fulfilling lives.”
By contrast, Kerry Lyons, Consultant Admiral Nurse for frailty at the charity Dementia UK, describes the negative impact being in hospital can have on a person’s symptoms.
“Patients with dementia enter a strange, noisy environment throughout the night, so their sleep is disturbed,” she says.
“They can withstand several room transfers outside of office hours, being moved from one place to another.
“Often there’s a communication breakdown and the right information doesn’t always travel with that person about what their usual baseline is.
“All of these factors contribute to delirium, leading to reduced cognition, more confusion, and more distress.”
People settle for a ‘much lower baseline’
Describing his mother’s time in A&E, an admitting ward, an elderly care ward, and eventually a medical intermediate care ward, Pete says his experience at the hospital was “appalling.”
“It was very difficult to get clinical information; most people refused to talk to me saying they were too busy, so I had to get information about it from other patients.
“Nurses would walk past her bed and she’d raise her hand to get their attention and they’d just say ‘oh, bless’.
“There was no stimulation, sometimes I had an electric clock to watch and that was it.”
Kerry says that a lack of physical movement and stimulation in a hospital ward are big problems for people living with dementia.
“With dementia, it’s really important to maintain the neuron-to-neuron connections by stimulating the brain every day; if you remove that, you’ll find a decline in cognition.
“And it’s not just neurological, if you don’t get a patient out of bed and on their feet in a timely manner, from a muscle mass standpoint, their mobility can go very fast.
“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 being admitted to hospital in October 2020, he describes her as “feisty,” “actively involved in her grandchildren’s lives,” and able to walk for about 10 to 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 have those moments,” he 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 the full-time caregiver for her mother and the family: her father, their three children and their partner lived together until a flood in August of that year forced Audrey, 81, to be cared for in a nursing home.
In October, the most recent Report of the Care Quality Commission (CQC) It showed there are 165,000 staff vacancies in social care and 132,000 across the NHS.
Inspectors found that this shortage has left both systems “crippled and unable to operate effectively.”
Lisa, 46, says that after she stopped eating and drinking properly at the nursing home, she was taken to the hospital with severe dehydration.
She claims that she was moved to the wards in the middle of the night, there were few references to her dementia, and after three weeks in hospital, she had “really deteriorated”.
Asked if he thought he had accelerated his decline, he said: “In 10 weeks in hospital and nursing homes, he did what probably should have taken five or six years minimum.”
“I’m very convinced of that ‘fast forward’ or ‘springboard’ effect.
“She had no idea where I was and I’m not convinced she knew who I was until I explained it to her when I visited her every day.”
At the start of her third week in the hospital, Audrey was placed in a discharge room, and staff said she would be transferred to a nursing home that day for rehabilitation services.
But for almost a week the discharge was delayed, says Lisa.
“When she got to the nursing home, they felt like she was at the end of her life. She managed six days there before she passed away.”
“If they had received it when they were supposed to five days before, I think it would have been a different story.”
The hospital trust told Sky News that it “works closely with our partners to ensure that patients can be discharged as soon as possible.”
‘I was hoping she could go home’
The October CQC report also found that only two in five hospital patients are able to leave hospital when medically fit due to a shortage of social care.
Pete says that he expected his mother to come home with a wheelchair and physiotherapy after a few weeks.
“He could have lived, and continued his gregarious life, before losing coherence.
“But it didn’t work out that way due to the lack of attention to his personal needs and the fact that he couldn’t express how he felt to anyone.”
Margaret suffered from grade four pressure ulcers while in the hospital and since then a serious review of her case has found flaws in her nursing care and failure to properly follow the correct protocols.
She was released from a nursing home on April 1 and died on May 24.
The hospital trust told Sky News that it offers its “deepest apologies and condolences” to the family.
Their investigation “acknowledged that errors occurred and treatment fell short of the standard we intend to provide” and “to which Margaret was entitled,” a statement said.
“A number of actions, including strict audits and increased training, were identified and subsequently implemented to improve patient care,” it added.
The government has yet to publish the 10-year plan
Dementia UK’s Kerry says the “current landscape” of dementia care within the NHS is “very difficult”.
“We’re working in a really stretched workforce with really limited resources.
“I am a daughter supporting my mother living with Alzheimer’s disease. And I know that local hospitals, in case I have to go with her, have limited provision for dementia.”
There are almost 900,000 people in the UK living with dementia, the equivalent of 7.1% of those aged 65 and over.
It is expected to increase to one million by 2024 and 1.6 million by 2040 as the population ages.
At any given 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 employs Admiral nurses (dementia specialists) to work in hospitals, care homes and the community, as well as providing a national helpline.
They try to avoid preventable admissions whenever possible, but when patients do go to the hospital, they 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 “by the end of this year” in May.
A spokesman for the Department of Health and Social Care told Sky News: “We want a society where all people with dementia, their families and carers receive high-quality, compassionate care in the right place, and we are providing 500 million sterling through our Adult Social Service. Assistance Discharge Fund to expedite the safe discharge of patients who no longer need to be hospitalized.
“The government made £17 million available to clinical start-up groups last year to tackle dementia waiting lists and increase the number of diagnoses, and we have committed to doubling funding for research. from dementia to £160m a year by 2024/25”.