Tens of thousands of dementia sufferers are being rushed to hospital every year because of shocking failings in England’s social care system.
Emergency admissions of people with dementia soared by 27 per cent over four years because inadequate social care leaves them unprotected from infections, falls and dehydration.
An investigation launched by the Alzheimer’s Society to mark Dementia Action Week found that nearly two-thirds of these admissions could have been avoided if decent care had been in place.
To make things worse, a poll found that almost three-quarters of family carers said their loved one with dementia had experienced medical issues because of a lack of support. One in nine said this had culminated in them being rushed to hospital.
Upsetting: Angela McDonnell in PPE visits her mother Maureen, who has dementia, in her care home
The dramatic findings come as the Alzheimer’s Society calls for the Government to publish a funding solution for social care to ensure dementia sufferers receive high-quality and affordable care.
The charity is campaigning for parity for the social care workforce with the NHS’s workforce – with better pay, training and working conditions for carers. As part of the Mail’s End the Dementia Care Scandal campaign, a petition signed by more than 365,000 readers calling for urgent action on care funding was delivered to No 10 in October 2019.
But over 18 months later, the Government has still failed to reveal its plan.
Kate Lee, chief executive officer at the Alzheimer’s Society, said: ‘Lockdown has left people with dementia cut off from vital support and care.
‘Interrupted routines, loneliness and isolation have contributed to rapid symptom progression, meaning there’s now more people than ever fighting for scarce dementia care. Without urgent action, avoidable hospital admissions will skyrocket, costing the NHS millions.’
She was failed over and over again
As an A&E nurse and great-grandmother of three, Margaret Mills spent her life caring for others.
But her family say she was let down terribly at the end of her life by a social care system that struggled to deal with her dementia.
In her last 18 months, she endured five trips to hospital before she died of sepsis in December 2019, aged 89, from a foot wound missed by care home staff and nurses.
Mrs Mills, a widow from Epping, Essex, started having home care after being diagnosed with dementia in 2018.
But her daughter Helen Taylor, herself a carer, worried that the staff were inexperienced and didn’t have enough time on their visits to make sure her mother was properly taken care of.
She said: ‘There were times when I could see my mum hadn’t taken her medication when she was meant to or hadn’t eaten. Because of her dementia, it took time and effort to coax my mum to eat.’
Mrs Taylor, 63, added: ‘She kept falling and having to go to hospital. But when she was missing meals and medication it was not surprising. It was an incredibly distressing time.’
In August 2019 Mrs Mills moved into a care home. Mrs Taylor said the staff were ‘lovely’ but many did not seem to understand the needs of her mother, who would often refuse food.
She added: ‘They said my mum was difficult, but many people with dementia will refuse things because they are confused or distressed.’
Mrs Taylor said: ‘My mum was failed over and over again because the people caring for her didn’t understand dementia. She was a nurse her whole life, and the system failed her.’ She added: ‘No one is taking responsibility for the mess we call social care – it can’t keep going on like this.’
Boris Johnson promised when he became Prime Minister in July 2019 that he would publish a plan his team had prepared to ‘fix’ the social care crisis ‘once and for all’.
But nothing has been published and last week’s Queen’s Speech included no new proposals and devoted just nine words to the issue – a devastating blow for the 850,000 people in the country living with dementia.
Mrs Lee added: ‘Decades of chronic underfunding and neglect have led to a care system that’s inadequate and deeply unfair – the pandemic has exposed these failings like never before.
‘People with dementia have been worst hit, accounting for over a quarter of all deaths and many more rapidly deteriorating from lockdown’s knock-on effects. Family carers are exhausted. This cannot be the kind of society that we expect today and that we want to grow old in – never again must people affected by dementia face such devastation.
‘The legacy of this terrible year must be a reformed social care system, which is free at the point of use and put on an equal footing with the NHS.
‘We need a system that gives every person with dementia the support they deserve.’
The Alzheimer’s Society investigation, which involved Freedom of Information requests to NHS trusts, found that in four years the number of people sped to hospitals rose from 60,023 in 2015 to 76,369 in 2019. Cases included falls, delirium, gastroenteritis, influenza, chest infections, urinary tract infections and dehydration.
In 2019, nearly two-thirds – 65 per cent or almost 50,000 – of all emergency admissions of people with dementia were cases caused by failures in care. The numbers span both those in care homes and people who receive care at home.
During Dementia Action Week, the Alzheimer’s Society is releasing a hard-hitting TV ad which is calling on the Government to ‘cure the care system’. Backed up by billboard advertising, the heart-wrenching advert exposes the stark reality of being a dementia carer not receiving adequate support. In a supporting survey of 795 unpaid dementia carers, almost half (48 per cent) reported that they had performed tasks they felt unqualified to carry out because of a lack of support.
The key demands
Coronavirus has exposed the dire state of social care. The PM promised on the steps of No 10 to ‘fix social care’. The Alzheimer’s Society is asking that the legacy of this disastrous year for those worst hit – people affected by dementia – is for the Government to publish a long-awaited plan to rebuild the social care system. That way, people affected by dementia should get the accessible, high-quality and affordable care they deserve. The plan should include:
- A budgeting plan, including a funding solution
- Parity for the socialcare workforce with the NHS workforce —including pay, training and working terms and conditions
- Ensuring the reforms consider not just funding, but also improving the quality of care
- Needs of those with dementia put front and centre of a new system
As a result, they reported three-quarters (72 per cent) of people with dementia having medical issues at home.
Three in ten had experienced avoidable falls, one in six missed medication, one in five hurt themselves in the house and one in nine reported their loved one being rushed to hospital in an avoidable emergency.
This devastating lack of support means many family carers are at breaking point, with 95 per cent admitting it impacts their physical or mental health.
The Alzheimer’s Society said that while an increase in the number of people with dementia has contributed in part to the rise in avoidable admissions, much of the increase is thought to be due to cuts in spending on adult social care.
The charity warned it expects hospital admissions to increase sharply, costing the NHS millions, unless drastic action is taken to improve dementia care.
In the last month alone, the Alzheimer’s Society has heard reports of people with dementia losing the ability to walk, getting pneumonia, and being rushed to hospital with kidney damage from dehydration. All of this is avoidable with quality care, the charity said.
It added that, with no drugs to cure or slow down the condition, it is social care that people with dementia rely on every day. But lack of time and dementia-specific training among the overworked and underpaid care workforce means sufferers aren’t getting the support they need, either in their homes or in residential care, leading to emergency admissions and more pressure on the NHS.
For advice, call the Alzheimer’s Society Dementia Connect support line on 0333 150 3456 or visit www.alzheimers.org.uk
Mum’s carers just don’t have enough time
By Elliot Mulligan for MailOnline
Before Maureen McDonnell moved into a care home she was physically active, fully mobile and enjoyed dancing with her daughter.
But the 83-year-old from London, who has advanced vascular dementia, has since been rushed to hospital twice because of failings in the social care system.
After moving into the home, her daughter noticed she was often left sitting in her chair and her mobility was rapidly declining.
Angela said: ‘Because of my mum’s dementia, I know she won’t drink and will sit in the same position for hours on end unless she’s encouraged to move. But if she doesn’t move, she’ll end up very ill and in a lot of pain.’
Her daughter’s fears turned out to be well-founded and her mother’s lack of movement meant she soon developed arthritis in her spine.
While at the hospital her daughter also found out her mother had been given sleeping pills by the care home. After a week of rest at her family home, Mrs McDonnell began to walk again with her daughter’s help.
Close: Maureen McDonnell hugs daughter Angela
She soon moved back into the care home with advice to walk around at least three times a day.
But once lockdown began in March last year, Mrs McDonnell’s family were not allowed to see her or take her out for walks.
They had to wait until June to be able to see her through a window at the care home, where her daughter noticed one of her mother’s legs was very swollen and she was limping badly.
Mrs McDonnell was taken to hospital again where a doctor said she had developed deep vein thrombosis from sitting still for too long. She was also badly dehydrated.
Angela said: ‘When I speak to the carers there, it’s clear that they just don’t have enough time to look after my mum in the way she needs.
‘I’m not sure they really understand her needs all the time either.
‘When I told them she needs to be walked three times a day to keep her mobile, they came back saying they aren’t going to force her to get up and walk if she doesn’t want to.
‘But I know she’s very placid and just needs encouragement, because she won’t do it by herself because of her dementia.
‘My mum means the world to me, and it’s heart-breaking to see her lose her mobility and be in pain for something as simple as being encouraged to move around a few times a day.’