Living standards across the UK are being squeezed in the wake of rapid price rises. For those living with dementia and their carers, who rely on social care and social support services, the consequences are severe, yet their plight is often overlooked, explains Clarissa Giebel.
The cost-of-living crisis looks set to be with us for some time, affecting our food, rent, heating and other life expenses. Since its onset, we have witnessed repeated strikes from unions in a variety of sectors for pay increases to meet the increased costs they face. Yet people with dementia and their unpaid carers cannot go on strike. They have to live with their pensions or incomes and make ends meet. This can be particularly difficult for unpaid carers, who are denied any financial compensation for their caring role from the government.
For a recent study, I teamed up with the Alzheimer’s Society, who conducted a survey across England, Wales and Northern Ireland on the impact of the cost-of-living crisis on people living with dementia. The key focus of our analysis was to look at how the cost-of-living crisis had impacted the ability of people living with dementia to pay for social care and social support services.
Gathering the evidence
The online survey, which was conducted in October 2022, asked people living with dementia, their unpaid carers, and people who knew someone with dementia (but were not their direct carer) about various impacts of the cost-of-living crisis – ranging from the ability to pay rent and food to accessing social care and social support services. In total, 1,095 people from the three target categories participated in the survey.
What do we mean by social care and social support, specifically for dementia? These types of care services include paid home care, support groups, day care, and respite care, and are provided to people with dementia living in the community. While care homes also fall under this category, for this survey, we were only interested in those living in the community.
Survey findings showed that, of those who were normally using social care and support services, 20 per cent had reduced their spending on care services since the cost-of-living crisis began. Particularly men and those from non-white ethnic backgrounds were at significantly increased odds of struggling to pay for care services.
Identifying the most vulnerable groups
People with dementia already experience many barriers when trying to access social care and support services such as where they live, how digitally literate they are, whether they have an unpaid carer or not, how much money they have, and what educational background they are from. The cost-of-living crisis has only amplified these. We know that people from a minority ethnic background already face additional cultural barriers in accessing dementia care, including stigma and language difficulties. Increased difficulties in accessing vital care will only disadvantage people from minority ethnic backgrounds further, and leave them without the support they need, including carer respite.
This survey puts a stark spotlight on the continued struggles within the social care sector – a sector that is notoriously underfunded.
The fact that men were struggling more than women with dementia in accessing care was surprising. When comparing the sources of funding for care service – so self-funding versus Local Authority subsidised – we found no differences across gender. That means that neither women nor men were more heavily reliant on either. Possibly, men with dementia manage their finances differently, which may explain why they struggled to a greater extent to pay for social care and support services. To fully contextualise these findings, we need to speak to people with dementia, and their carers, about the impacts of the cost-of-living crisis.
Placing these findings in the current political climate and policy context, this survey has put a stark spotlight on the continued struggles within the social care sector – a sector that is notoriously underfunded and failing to be prioritised. In light of the recent announcement that the investment into the social care workforce is to be halved from £500 million to £250 million, this survey only highlights how cutting down investment into the sector will add to growing inequalities for people living with dementia.
A wake-up call for policy-makers
However, with a reduced social care budget, staff will continue to receive a lack of support and training compared to the standard that they require. This in turn will leave unpaid carers without, or with very little, respite, leading to poor mental health. In addition, people living with dementia will continue to face many barriers in accessing care, and many will not be able to receive the care that they require, or at least not in time.
Hopefully our survey can act as a wake-up call, putting social care under the lens of the cost-of-living crisis. This is particularly important as the original 10-year plan on dementia, promised by former Health Secretary Sajid Javid, has not come to fruition due to changing political leadership. Thus, dementia as a whole has been even further neglected, with no single dementia strategy currently in place. What is required is targeted support for people living with dementia and their unpaid carers. Specifically, men and those from minority ethnic backgrounds need to be supported better to access care. To understand precisely how, whether financially or otherwise, further qualitative research is required.
This article draws on the research article “A 3-UK-nation survey on dementia and the cost of living crisis: contributions of gender and ethnicity on struggling to pay for social care” published in Aging & Mental Health.
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