Dementia: Desperate calls for support from the families battling England's biggest killer

  • Words and video report by ITV News Anglia's Rebecca Haworth

Families supporting people living with dementia have pleaded for more support, highlighting a nationwide lack of carers that has left them struggling alone.

The condition is the biggest cause of death in England - killing more people than cancer or heart disease - yet loved ones of those with the condition say they feel isolated and adrift because of the lack of support.

Around 100,000 people are living with the condition in the East of England, but due to a record number of social care staff vacancies there simply is not enough help available, say charities.

The Alzheimers Society has described it as a "broken social care system".

Bill and Pat Davies from Bedford told ITV News Anglia how they were coping with a diagnosis that changed their lives three years ago.

They have been married for 45 years - but, a month before lockdown in February 2020, Mr Davies, 79, found out he had Alzheimer’s.

Bill and Pat Davies on their wedding day, 45 years ago. Credit: ITV News Anglia

His wife, 75, said she had noticed he was getting very forgetful, and that it was a relief for them to both finally understand what was wrong.

Mr Davies said the moment he found out was "terrible".

"Really I used to do everything," he said. "I could remember everything from 25 years ago, but now I can't."

They were speaking at an exercise class organised by the Tibbs Dementia Foundation in Bedford, which was set up 10 years ago, and offers 40 different activities to help those with dementia to live well.

Later, at home in the village of Marston Moretaine, Mrs Davies told us what life was like with her husband.

“I'm frightened of saying something simple and then Bill getting agitated and upset about it," she said.

"Frustration comes into it. A lot of people don't see and or don't understand it if he gets agitated about something. I find that difficult."

The couple do not need any medical help yet, but they are eligible for respite care.

However, there are currently no carers available to do it. Mrs Davies said: "We only had one care organisation but they haven't got enough people to do it.

"It's frustrating, very sad, that when you've never had anything from the state, when you need it most you just can't get it.

"There's a lot of people worse off than us and they're still not getting any help either."

Social care vacancies are at a record high at the moment - across the UK, there are 165,000 roles waiting to be filled, including 19,500 in the East of England.

Industry body Skills for Care has found there are problems with recruiting and retaining staff, despite the demand for care rising.

It found that the number of people in the social care workforce has shrunk by 50,000 - meaning that at a time when the country needs more carers, there are fewer.

Analysis by the Alzheimer's Society has looked into what impact this is having on family and friends of people living with dementia.

They discovered that across the East of England, family and friends are providing unpaid care worth more than £1 billion every year - a number that is expected to keep on rising.

Currently, people with dementia have to fund the complete cost of their care, unless they have assets of less than £23,250.

This means many end up spending everything they have on their loved ones’ care.

Christine Holland, who spoke to ITV News Anglia about her husband David's dementia diagnosis. Credit: ITV News Anglia

Christine Holland is another unpaid carer who spoke to ITV News Anglia at a Music 4 Memory group run by Tibbs, and has experienced first-hand what it is like to have little support.

Her husband of 45 years, David Holland, was diagnosed with early onset dementia when he was 62. She looked after him at home for 11 years, but could not cope with the 24/7 care any longer, and he now lives in a care home. She said: "I'm sorry to say although I try and be positive, there's not a lot of help out there.

"And that's why without things like Tibbs I think you would quietly give in, because it would be too much for you.

"When we got the diagnosis, which took about a year of tests, they said to my husband and I: 'You've got dementia, it is Alzheimer's. Come and see us when it gets worse - and it will get worse for sure'.

"And that was all they said to us and we never saw them again for about five years."

The Department for Health and Social Care said it was investing to increase the number of carers.

A spokesman said: "Everyone with dementia should have meaningful care following their diagnosis and access to timely information and advice on local support.

"We will publish a Major Conditions Strategy covering six conditions including dementia which will set out the standards patient should expect and look at early detection and treatment of diseases.

"And to tackle social care staffing pressures we run a recruitment campaign, are investing £15 million in international recruitment, and have made care workers eligible for the Health and Care Visa."

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