Monday, November 20News For London

The hidden cost of caring

Government cuts are driving an increase in unpaid carers looking after their loved ones, which is having an adverse effect on both patients and their relatives.

Dementia
Caring for a loved one suffering from dementia can bring more harm than good, especially for the unpaid carer Photo by Flickr.com/ElisaPaolini

Things were a little muddled upstairs at the old lady’s house. A packet of cereal poked out from her knicker drawer and a toothbrush could be found tucked in her shoe.

Aware of how sensitive the situation was, the lady’s carer suggested a big clean-up. The lady agreed but stiffened as she watched Belinda sort her underwear and socks in piles on her bed.

Suddenly, she snapped. “It was insurmountable for her. She couldn’t handle this chaos that wasn’t hers,” Belinda remembers. She began ripping the piles apart, screaming, and throwing balls of underwear at Belinda.

In the flurry of aggression and flying underwear, Belinda stood with a quiet calmness and exclaimed: “Holy f*cking sh*t!”

“It was the last reaction the proper little lady expected. I picked up some of her clothes and threw them right back at her.”

The old lady’s shock turned into giggles and the two made a game of throwing clothes at one another.

“It was the only way I could diffuse the situation,” Belinda explains. As a senior care practitioner, Belinda has been trained and developed her own tactics in dealing with people with dementia, especially when they experience a bout of aggression.

For a family member, the altered mental state is one of the most challenging and frustrating parts of dementia. They are not equipped to deal with the hissing person standing before them when their loved one slips out of sight.

“The family member taking on the role of carer must have the patience of an angel, because even in our job our patience is tested to the very limit.”

Keeping it in the family

Increasingly, friends and family members are stepping in to provide care for people with dementia. In the UK approximately 1.5 million people provide over 50 hours per week of unpaid care.

The pressure on family or other unpaid care is set to increase alongside government cuts to adult social care and a rapidly growing ageing population.

London is home to two million people over the age of 50, with the London boroughs of Barnet, Bromley and Croydon housing the highest numbers. According to a poll by Alzheimer’s Research UK, nearly a third of people older than 50 are worried about the burden they will place on family members later in life.

Many more Londoners and family members up and down the country are currently dealing with the challenges of caring for loved ones. For the 850,000 people in the UK living with dementia, there are 700,000 friends and family members shouldering the responsibility of caring.

Social carers in London specialising in dementia services like Belinda are few and far between. “More often than not a family member will feel obliged to pick up the pieces. But they aren’t equipped to deal with the challenges of dementia on top of losing the person they once knew.”

The unique burdens of caring for someone with dementia were unpacked in a report released this week by Alzheimer Research UK. The report drew on case studies of carers dealing with family members with dementia to illustrate the effects of providing full-time care.

All too often family members sacrifice their health, finances and relationships to ensure their loved one has the best care possible.

The sad reality is that as one person’s cognitive function deterio­rates, so their carer’s entire world begins to crumble.

“Caring for someone living with dementia is unlike caring for a person with any other condition, often at great personal cost,” confirmed George McNamara, Head of Policy at Alzheimer’s Society.

“Thousands of carers are reaching crisis point and are in desperate need of support.”

Through spending time with carers, the report found that loved ones have a limited understanding of the pathological deterioration that takes place. Instinctively dementia is thought to be a decline in memory and a mental health issue.

“It’s quite understandable for a family member to point the psychiatric finger at them because they look at their loved one and see that sometimes they’re OK and sometimes they’re not,” Belinda says.

Evidence from the report suggests that through an increased knowledge of the condition, both from a biological and caring perspective, carers can improve the quality of care they provide and their own ability to manage the situation.

The report found carers particu­larly struggled with the aggressive and violent behaviour that developed as the dementia progressed.

“I had another lady who absolutely adored her husband but woke up one morning and decided she hated him and wanted to kill him,” says Belinda. “And she was going to kill him.”

“As a carer you can’t just brush off the words, ‘I’m gonna kill him, I’m gonna kill him’. You have to ask the person how they plan to do it, and they will tell you.” In this situation the lady was going to “knife him to death”.

“Because they’re operating in an altered state they are able to kill someone. They seem to lose the fear of consequence.” The lady was eventually sectioned (compulsorily detained) under section three of the Mental Health Act.

“If I had not been there we would’ve had two problems: A murderer and a highly vulnerable woman who had just killed her primary carer.”

An army of unpaid carers

Government cuts to adult social care will result in increased pressure on family or other unpaid care, according to a study by the International Longevity Centre and supported by Age UK.

The report, ‘The End of Formal Adult Social Care?’ deemed the proposed measures outlined in the Spending Review – which includes more resources for the Better Fund Care and the council tax precept – insufficient to meet the growing care needs of an ageing population.

“With local government facing more real terms spending cuts, we are unlikely to have the required infrastructure to move to a model of care that relies so heavily on family and community support,” said the report’s author, Ben Franklin.

In analysing data from 326 local authorities, the report found that the councils with the highest concentration of older people and unpaid carers will be the ones that will bring in the least amount of money from the two percent council tax precept.

This will result in an even greater reliance on unpaid carers as well as an erosion in the quality of care provided.

CarersUK have estimated the economic value of unpaid carers to be £132 billion per year. “Without them our health and social care system would cease to function,” said McNamara.

Franklin warned that this increased prevalence of informal care would adversely affect those providing support, the economy as a whole, as well as those being cared for.

Belinda worries about the impact on the unpaid carer. “By cutting care, more of the burden will be placed on the family than the person who actually requires the care.”

“What are they cutting?” she asks. “They’re cutting the very little time that families have together. What else can you cut out of a person’s life?”