Dementia was the leading cause of death in the UK last year (Image: Getty Images/iStockphoto)
Almost two-fifths of people believe a relative might have undiagnosed dementia, a wide-ranging survey into the nation’s worsening dementia crisis has revealed.
Alarming figures reveal 37% of caregivers have had to quit work while 30% were forced to downsize or sell their homes, with thousands more carers at breaking point. Nearly a third of 1,000 people polled for UK home care provider Home Instead had a family member with dementia, rising to 51% for multigenerational family carers.
The scale of the crisis is so concerning that two-thirds (66%) of respondents want dementia to be declared a “health emergency”, with 76% calling for a national screening programme to improve early diagnosis.
The new survey came as separate analysis revealed dementia was the leading cause of death in the UK last year. Figures from Alzheimer’s Research UK show 75,393 people died from dementia in 2023, compared with 74,261 in the previous 12 months and 69,178 in 2021. The “crisis will only worsen” because of the ageing population, Alzheimer’s Research UK warned, unless the Government takes action.
It added that the Government’s upcoming 10-year health plan should be used to “future-proof” NHS dementia services so the condition “doesn’t remain a death sentence”.
Ruth Brown, chief operating officer of Home Instead, told the Daily Express: “A diagnosis of dementia is devastating for any individual but the wider impact on family carers can also be horrendous. Our research paints a fairly desperatepicture, with lives and careers put on hold for many who step into care for their loved ones.
“What these families need is practical help and this channel is a resource designed to do exactly that. We need to help these carers shift away from trying to do everything themselves. To find better and more workable solutions.”
Home Instead launch Dementia ‘home truths’ campaign
Nearly a million Britons are believed to have dementia with the number predicted to rise to 1.4 million by 2040.
One of them is ex-England international rugby player Steve Thompson, 46, who has been diagnosed with early onset dementia and is backing calls for more support for sufferers and their families.
“Raising awareness and understanding of dementia is absolutely vital – not just to help those directly affected but to foster a more compassionate society that knows how to respond and support,” the former hooker told the Daily Express.
The Rugby World Cup winner last year revealed he can no longer remember his team’s tournament win against Australia in 2003. He’s now supporting Home Instead’s new YouTube channel “Home Truths” which has been set up to support, educate and inform individuals who are struggling to care for a loved one with dementia.
Steve said: “It is a brilliant step forward, providing accessible information and practical advice to help families navigate the challenges of dementia with dignity and confidence.
“This kind of resource can make a real difference, empowering families and carers with the knowledge they need to provide the best care and support possible.”
English hooker Steve Thompson can no longer remember his 2003 Rugby World Cup final win (Image: AFP via Getty Images)
Home Truths will provide a wide array of topics from how to understand dementia and manage symptoms to improving the quality of life for those affected. It will also feature expert advice, step-by-step guides and personal stories.
Rita Clark, a carer for her partner Nicky Clarke for the last 13 years, is one person hoping to benefit from the resource. The former children’s services worker believes caregivers are being failed by the system.
Rita, 81, from Chesterfield, said: “Caring for Nicky as her dementia has progressed has been a journey filled with both love and immense challenges. Despite our backgrounds in social care, nothing fully prepares you for the emotional reality of supporting a loved one with this condition.
“Thousands of families around the UK are struggling daily to support loved ones with dementia. They urgently need clear, compassionate guidance and to feel seen and supported. Help is out there and you are not alone in navigating this path.”
Someone develops some form of dementia every three minutes in the UK. It is an umbrella term for a range of progressive conditions that cause a deterioration in activity in the brain.
Typically, the individual affected may experience memory loss, brain fog, confusion and problems with their speech.
The most common type of dementia is Alzheimer’s disease but other prevalent types include vascular dementia and Lewy body dementia, which can cause hallucinations and sleep disturbances.
With around 200 types of dementia, concerned relatives can find it difficult to spot and recognise.
Kayleigh Ogleby, 39, from West Sussex, right, with her mother Pam Webster, 75, left on her wedding day (Image: Kayleigh Ogleby)
This is what happened to Kayleigh Ogleby, 39, from West Sussex, after her mother Pam Webster, 75, developed dementia symptoms “really quickly” in the summer of 2020. Pam was eventually diagnosed with vascular dementia and Alzheimer’s in June 2021.
“My mum kept getting her words mixed up on text messages and calling her cat a dog,” said Kayleigh, a HR manager and mum-of-three who campaigns for greater dementia awareness online.
“She’d get a bit confused although there was nothing that sinister that I could definitely say it was Alzheimer’s.”
She adds: “She’s always been very determined, independent and proud of her appearance. She never left the house without make-up on and had her hair and nails done regularly. I remember seeing that she’d forgotten to put mascara on and thought that was not like her.”
Kayleigh’s aunt called her up in September 2020 to confirm she too was worried about Pam, a former company director of a chartered surveyor. Pam found it difficult to come to terms with her Alzheimer’s diagnosis. Since July, she has been living in a care home on end-of-life support.
Kayleigh and her dad, Brett, 75, have struggled to find the right help at every stage of the process.
“I’m an only child and I was pushed from pillar to post. There’s supposed to be integrated care but nothing is integrated. You go round in circles with your GP and social workers,” said Kayleigh.
“Everyone’s got a little bit of the puzzle but no one’s got the whole thing. It’s so frustrating.
“You’re also trying to deal with the practical side of getting a diagnosis, and then the right support while also dealing with your own grief, which you don’t fully understand because you’re losing someone bit by bit.”
Rita Clark has cared for her partner Nicky with late-stage Alzheimer’s disease for 13 years (Image: -)
“My dad was having to give personal care, which he wasn’t trained for and which he knew my mum would have hated. It’s been nothing short of horrific.
“Given dementia is the leading cause of death in our country, I can’t understand why it’s so under-funded.”
Hilary Evans-Newton, chief executive of Alzheimer’s Research UK, said of their new analysis of deaths: “This data reveals the tragic reality of dementia’s devastating impact across the UK. This crisis will only worsen as our population ages, unless the Government takes action.”
She added: “By 2040, over 1.4 million people are expected to be living with dementia in the UK, with heartbreaking consequences for countless families and placing ever increasing pressure on public services and the economy.
“Dementia already accounts for a quarter of hospital beds for people over 65, and the cost of dementia to the NHS has doubled in the last decade mainly due to often avoidable emergency admissions.”
Learn more about Home Truths at youtube.com/@homeinsteaduk
