The experiences of unpaid carers of people living with dementia during the cost-of-living crisis: A reflexive thematic analysis

Abstract

Some carers have reported struggling to manage the additional costs of caring for someone with dementia, which has negatively impacted upon their financial resilience. Since 2021, this has been compounded by the cost-of-living crisis experienced in the United Kingdom. This crisis has been driven by sharp increases in energy prices and the prices of everyday basics such as food. This study aimed to better understand how unpaid carers, supporting and co-habiting with people living with dementia, experience the cost-of-living crisis, and the impact this has on their ability to provide care for the person living with dementia. Eleven carers supporting and co-habiting with people living with dementia in England, took part in two semi-structured interviews approximately 3 months apart between November 2022 and February 2023. All transcripts were analysed using reflexive thematic analysis. Carers reported having to make difficult and sometimes drastic decisions in reaction to the cost-of-living crisis and the uncertainty of future cost-of-living increases, such as using blankets and extra lays of clothing for them and the person living with dementia in place of using the heating system in their home, going without food so their loved one can eat, or even missing social opportunities. Some carers described aspects which they felt mitigated some of the negative impact of the cost-of-living crisis, such as being able to draw upon financial resources or their local authority providing social events which included a heated space with food. The cost-of-living crisis has led to carers having to make difficult decisions which created worry and anxiety. Findings indicate that many carers need financial support, and it would be beneficial for free social events to be organised which provide a heated space and food, where carers and people living with dementia can socialise with others.