North Yorkshire family urge others to seek support when caring for loved one with dementia

It’s being described as the biggest health and care issue of our time

Author: Ellie CloutePublished 17th May 2024

Families in North Yorkshire looking after a loved one with dementia are being urged to get support before reaching crisis point.

Nicola Atkinson, 56, a teaching assistant from Barlby, North Yorkshire, reached breaking point after spending years caring for her mum, Jean.

Jean, 81, had been living next door to her mum until COVID-19, when Nicola decided to move her into the family home. Over the coming months and years, the family noticed Jean steadily deteriorating until the point she could not be left alone and unsupervised.

"She could very easily misunderstand a situation and become very angry, upset, very shouty about it, take herself off and then ten minuets later she had forgotten the incident but you were still fizzing from the incident as well".

Jean said she never wanted to go into a care home so the family did not broached the topic of what to do if she became too infirm to stay in the family home. They thought they could manage on their own as a family. But full-time care took its toll on the family and they reached crisis point in September 2023 before moving her into a specialist home.

Since then, Jean’s quality of life has improved – so too the rest of the family, who can now enjoy time with Jean.

Nicola says she wants to share her story in the hopes that others will reach out for help: "Reach out for that support it's amazing how many people are touched by dementia in their families and are struggling to cope."

Dementia cost set to hit £90 billion 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.

The charity's research has revealed the cost of dementia in the UK has reached a staggering £42 billion per year and is set to rise to £90 billion 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 dementia sufferers 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.

A Department of Health and Social Care spokesperson said: “Timely diagnosis of dementia is vital, which is why we’re working to identify and treat more people and provide potential new treatments as they become available.

“We’re also doubling funding for dementia research to £160 million a year by the end of 2024/25, and dementia is one of six major conditions included in our upcoming Major Conditions Strategy.”

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.”

Hear all the latest news from across the UK on the hour, every hour, on Greatest Hits Radio on DAB, smartspeaker, at greatesthitsradio.co.uk, and on the Rayo app.