Dementia cost reaches more than £4 billion in East of England
The Alzheimer's Society are speaking out about the emotional and financial impact of dementia
Last updated 13th May 2024
A woman who cared for her mum in the East of England is telling us knowing where to go for support after a dementia diagnosis has been tough.
It comes as the Alzheimer's Society warns the cost of dealing with the UK's biggest killer in our region is at almost £4.3 billion a year, which it says could rise to almost £9.1bn by 2040.
Dementia costs the UK a staggering £42 billion according to the Alzheimer's Society, which has also revealed that families foot 63% of the costs.
Caroline Ignatius' mum was diagnosed with early onset Alzheimer's in 2010, looking after her before she moved to a care home, while her dad is living with vascular dementia.
"She asked me for the first time who I was"
"What we struggled with after the diagnosis was 'what happens now', so we had to seek support, try and learn about the condition and navigate it as best we can on our own," she said.
"I spent all my savings creating us an environment where she could be happy with me and about six months into our journey, she asked me for the first time who I was; I guess I knew it was coming, but nothing prepares you for that moment.
"Mum would get agitated, frustrated and scared which is understandable when there's a stranger in your house in her reality, but that ended with her being sectioned; I never saw that coming, I thought I'd be caring for her for years."
Caring has taken its toll
Caroline is helping run day centres in the East where people living with dementia can take part in different activities such as dancing, singing and bingo.
But she told us the impact of caring for and seeing her mum continues to be difficult.
"It hits you that my mum, I know she'll never know my children if I have children, she'll never be able to be at my wedding which is hard; it's like grieving for someone who's still alive," Caroline added.
"It's still quite hard; there are moments where mum would get sick and we worry but I don't think a lot of people understand what it's like to have a loved one with dementia until they experience it themselves.
"It's more about understanding and accepting this condition they have is not going to get better.
"I know how many times I've left my keys somewhere and I'm determined that they are somewhere, and then they're somewhere else; that feeling you get when you're like 'I didn't know I put them there', that's how someone with dementia feels all the time when they get corrected."
£42bn care costs for dementia
The charity's research, published today as part of Dementia Action Week has revealed the cost of dementia in the UK has reached a staggering £42bn per year and is set to rise to £90bn by 2040, unless action is taken.
Analysing the last seven years, the research uses the records of 26,000 people, revealing 63% of dementia costs are footed by families.
This figure further increases from £29,000 per year for mild dementia, to a shocking £81,000 for severe dementia.
The study, commissioned by the Alzheimers Society and undertaken by Carnall Farrar Ltd, is one of the largest UK studies on the economic impact of dementia.
Numbers of unpaid dementia carers to increase
The study revealed that in line with increasing numbers of people living with dementia, the need for unpaid carers will also rise by 2040, with 43% more people expected to provide unpaid care.
Many unpaired carers have had to give up work to care (16%) with a third spending more than 100 hours per week caring.
Many with dementia don't have a diagnosis
Almost one million people are living with dementia, yet a third is estimated to have not received a diagnosis. Funding on dementia diagnosis makes up less than 1.4% of total health expenditure in the UK, with the majority of costs coming for social care and unpaid care.
A lack of diagnosis means further stress and impact on loved ones, carers and friends when the condition worsens, effecting them financially and emotionally.
Alzheimer's Society reports with an ageing population in the UK, by 2040, those with dementia in the country will rise by 43%, with a 53% increase in London.
The charity is calling on the Government to increase access to early dementia diagnosis, to help families from reaching crisis point.
One in three will develop dementia
Kate Lee, Alzheimer’s Society CEO, said: “One in three people born today will develop dementia. It’s the biggest health and care issue of our time, yet it isn’t the priority it should be amongst decision-makers. We wouldn’t accept this for any other terminal disease, we shouldn’t accept this for dementia.
“One in three people with dementia do not have a diagnosis. They are facing dementia alone without access the vital care, support, and treatments. If we don’t address diagnosis, we have no hope of addressing the major dementia challenges we face and reducing the cost to the health service and wider economy.
“Dementia’s devastating impact is colossal – on the lives of those it affects, on the healthcare system and on the economy. Now is the time to prioritise dementia, and that starts with getting more people diagnosed.”
Early diagnosis is key
Vicky McClure MBE, actor and Alzheimer's Society Ambassador, said: “More needs to be done now to support people in getting a dementia diagnosis. Dementia can absolutely devastate families in so many ways but receiving an early diagnosis can be a lifeline for people to access the vital treatment and care they desperately need.
“People showing signs of dementia, those now living with the condition and the people that love and care for them are being forgotten - it has become the UK's forgotten crisis despite dementia being the UK's biggest killer.
“I've seen first-hand the challenges families face before and after a diagnosis and having supported Alzheimer's Society to push for change for many years, it breaks my heart that we're stuck in the same place with hundreds of thousands of people still undiagnosed.”