Published: 06:00, 17 May 2021
A company director has joined the chorus calling for more help for those diagnosed with dementia and those who care for them.
Dementia is once again the UK's biggest killer - replacing Covid last month as fatalities of the pandemic started to ease - but as Dementia Action Week gets under way, one of the largest charities, the Alzheimer's Society, is calling on urgent government intervention.
It says "decades of chronic underfunding and neglect have led to a care system that’s inadequate and deeply unfair".
And the harsh reality of the situation was felt by Jason Gibbons, from Maidstone.
He has spoken out at the struggles his family faced when his father was diagnosed with the illness 10 years ago. His father died earlier this year with Covid-19 after the family were forced to make the painful decision to move him into a care home.
Prior to that, his father's main carer had been his wife.
Mr Gibbons said: "My mum is in her 70’s. The physical and mental strain on her has taken its toll, her health has deteriorated accompanied by the guilt, grief, and emotion of ultimately making the difficult decision when Dad had to go into a care home."
Dementia is the name for a group of symptoms that commonly include problems with memory, thinking, problem solving, language and perception.
It is caused by different diseases that affect the brain, causing a loss of nerve cells. Alzheimer’s disease is the most common.
Some 850,000 in the UK live with dementia, while 225,000 will develop the condition this year - that’s one every three minutes.
But the cost of moving people into care homes for the round-the-clock attention they need can be enormous - both financially and mentally.
According to CareHome.co.uk, the average cost of a care home place in the UK is £33,792 a year, and £42,624 if nursing care is required - although it warns that figures is likely to be higher in the South East.
Mr Gibbons added: "Fortunately, we had some savings, but they were quickly swallowed up, and we did not know what would happen both with Dad's care, and how Mum would cope with all the family savings gone, when our capacity to contribute changed.
"We also struggled with complex legal issues associated with the loss of my father’s mental capacity, where no power of attorney was in place. An application had to be made to the Court of Protection by me and my sister to become court-appointed guardians, this took almost 18 months.
"I could see the stress the entire system was under and losing my father in such tragic circumstances has affected the family deeply. For too long families affected by dementia have faced economic hardship and the cost of care is a big worry added the intense stress of facing a very difficult diagnosis.
"The impact dementia has on families is difficult to explain sometimes, besides the concern for their loved one’s wellbeing it extends to the immediate family and beyond, it become a constant worry never far from the surface.
“The self-funding criteria for long term care requires radical reform, the present levels of state funding are insufficient and do not adequately consider the long-term impact on spouse’s and other close family members.
“Everyone knows friends or family who are coping with dementia, but until it becomes a reality for you, you cannot begin to fully understand the devastating effects on your loved one, family and how deeply and totally it takes over your life.”
And the financial and mental strain hitting families hard is only the tip of the iceberg.
The Alzheimer's Society has revealed that even before the pandemic, tens of thousands of people with dementia were being rushed to hospital each year, up 27%, blaming "inadequate social care", which left them "unprotected from infections, falls and dehydration".
And the charity took a swipe at Boris Johnson for failing to deliver on his election promise to deliver a plan for social care reform during the Queen's Speech last week.
Its investigation, involving Freedom of Information requests to NHS trusts, found a 27% rise between 2015–2019 of people with dementia sped to hospitals with avoidable emergencies. In 2019, nearly two thirds (65%) of all emergency admissions of people with dementia were for avoidable illnesses and injuries caused by failures in care.
Kate Lee, chief executive officer of the Alzheimer’s Society, said: “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."
To mark Dementia Action Week - which runs from May 17-23 - the Alzheimer’s Society is releasing a hard-hitting TV ad which is calling on the government to ‘cure the care system’. The advert exposes the stark reality of being a dementia carer without adequate support.
In a supporting survey of unpaid dementia carers, almost half (48%) reported that they had performed tasks they felt unqualified to carry out because of a lack of support, and as a result, they reported three-quarters (72%) of people with dementia having medical issues at home.
Three in ten had experienced avoidable falls (29%), one in six missed medication (16%), one in five hurt themselves in the house (22%) and one in nine (11%) reported their loved one being rushed to hospital in an avoidable emergency.
While an increase in the number of people with dementia has contributed in part to the rise in avoidable admissions, much of the increase, claims the charity, "is thought to be due to cuts in spending on adult social care piling pressure on A&E and ambulance services".
The charity warns it expects hospital admissions to increase sharply, "costing the NHS millions", unless drastic action is taken to improve dementia care.
Adds its chief executive: “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 and so desperately need.
“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.”
Despite promising social care reform when successful in the 2019 General Election, in the Queen's Speech this month there was just a passing reference to the issue with the one line “proposals on reforms to social care will be brought forward”.
Further details, however, are not expected until the autumn at the earliest.
Charlotte Noar, a Sevenoaks-based artist, added: "For three years my mother cared for my father who developed vascular dementia after having a stroke. I also supported his care, while trying to work and raise a young family, and found the care system very difficult to access. Sadly, my father had further strokes and finally entered the care home system and passed away, leaving us all devastated.
"Just a few months later my mother was diagnosed with dementia herself, and to make matters worse I had to sell the cherished family home to pay for her care.
"I feel carers are left to their own devices - feeling their way in the dark at a time of incredible stress and sadness - the challenges for carers are economic, as well as mental and emotional.
"It is already overwhelming enough to be experiencing a living grief of slowly losing a parent before your ‘very eyes’ to dementia, and this is compounded by a lack of support and care for carers at such a very difficult time."
To find out more click here to visit the Alzheimer's Society website.