This is a a blog by David Ward, who works in the tide Scotland team.
It’s Challenge Poverty Week, so at tide we have been talking about the ways poverty affects the carers on our network. Dementia can happen to anyone but the experience is worse for those already living in poverty and can push others into poverty. At tide we’re determined to change the way carers are recognised, valued and treated. We believe that services and support for carers of people with dementia are a fundamental and necessary human right. It is our mission to ensure that the needs of these carers are recognised and valued by absolutely everyone in the UK.
Dementia disproportionately affects women. Dementia is the biggest killer of women in Scotland, the people most likely to be care workers are women and in the latest State of Caring Report from Carers UK, 80% of the unpaid carers surveyed were women. The work that goes into caring for someone is too often hidden, or seen as an expression of love, this places unfair expectations on women to do the work that others in their families and communities won’t do, and that the state doesn’t pay for.
A report by the GMB union last year showed that 15,000 people in Scotland are in debt because of social care bills. This doesn’t line up with the Scottish Government’s roll out of Self-Directed Support (SDS). Carers should be given a personalised budget that covers the needs of the person with dementia and allows them to live their life alongside their caring responsibilities. According to GMB’s report, the same local authorities that are expected to deliver SDS and provide carers with Adult Carer Support Plans are taking increasing numbers of carers to court to scrape back these debts. All of the strategies in the world can’t alleviate poverty if the local authorities tasked with implementing them are consistently having their funding cut!
The Scottish Government’s Carer’s Allowance Supplement is a welcome step in the right direction to boost the incomes of carers but this payment stops when you claim your pension. This places over-65s, the majority of those caring for someone with dementia, at greater risk of experiencing poverty.
Demanding that the work of caring is acknowledged, valued and supported does not mean that carers don’t love the person with dementia. But too often carers are asked to draw from the well of love as if it’s an infinite resource, with little regard for the impact on the carer’s well being. This resource is seen by governments globally as one to exploit to save on health and social care budgets in an age of austerity, but carers are often driven to crisis point by the weight of these expectations. When carers hit crisis point they are then forced to go back to those underfunded services: 75% of carers in the UK have suffered from ill health as a result of caring. Increased societal awareness of dementia is only a positive thing if the families who are dealing with a diagnosis are supported to look after the person with dementia.
The Scottish Social Attitudes report for World Alzheimer’s Day 2018 made clear that caring for someone with dementia is interlinked with poverty:
“In terms of socio-economic factors, people living in the most deprived areas were more than twice as likely as those living in the least deprived areas to provide care for someone who did not live with them.”
In the day-to-day work of our team, we challenge poverty in a number of ways, including signposting carers who are experiencing poverty to organisations that can help them, whether it’s with their SDS claim or general benefits advice. Primarily it is informing carers of their rights under the new Carers Act and empowering them to speak up.
Carers on our network are standing up for themselves to improve their housing: this challenges poverty. We have members citing legislation to social work departments in order to get a realistic SDS budget that will allow them to live the life they are entitled to, whether they are in or out of work: this challenges poverty. tide carers are using their increased confidence from working with us to find work after their caring journey has ended: this challenges poverty.
By investing in carers as individuals we are building a network of carers who are able to hold local authorities, health boards and governments across the UK to account. This builds momentum for society to re-evaluate the status that caring for someone is given and helps break down the gendered poverty experienced by those caring for someone with dementia. Part of this is a funding issue, but part of this is challenging our personal assumptions about who should do the work of caring for someone with dementia and the reality of what that should look like.