Care beyond the city: The lived experiences of caring for a family member with dementia in rural Northern Ireland

Abstract

Dementia is one of the most pressing health and social care challenges facing the United Kingdom, with over 900,000 people currently living with the condition. In Northern Ireland alone, more than 22,000 individuals are affected, a number projected to nearly double by 2040. While much of the research and policy focus has centred on urban care provision, less attention has been given to the distinct experiences of caregivers in rural settings. This dissertation explores the lived experiences of individuals caring for a family member with dementia in a rural area within Northern Ireland, a demographic that faces compounded challenges due to
geographic isolation, limited services, and systemic gaps in support, leaving a gap in understanding how these rural-specific barriers affect informal carers.  The central research question guiding this study was: What are carers’ experiences of caring for a parent or family member with dementia in rural Northern Ireland? The study aimed to understand the unique difficulties faced by these caregivers, how they perceive and engage with formal and informal support systems, and the coping mechanisms they employ to manage emotional, physical, and logistical pressures. Five research objectives were developed to examine themes around isolation, access to services, support networks, rural-specific challenges, and potential improvements to care provision.

A qualitative research design was adopted using semi-structured online interviews with ten participants. Inclusion criteria required that participants were currently or had previously cared for a parent or family member with dementia for a minimum of six months while residing in a rural area in Northern Ireland. Participants were recruited via purposive and snowball sampling methods, with interviews conducted online via Microsoft Teams (MS Teams) to ensure accessibility across rural locations. The data collected was analysed using Braun and Clarke’s reflexive thematic analysis, which enabled the identification of patterns of meaning across the dataset while acknowledging the active role of the researcher in the interpretive process. The findings reveal that caregivers in rural Northern Ireland experience high levels of emotional strain and burnout, exacerbated by limited access to healthcare, poor transport infrastructure, and the inflexibility of care packages. Many participants described feeling unsupported, both practically and emotionally, and often relied heavily on informal networks or self-taught strategies. However, a small number of participants also spoke positively about strong family support and trusted local healthcare providers.

This study concludes that caregiving in a rural area within Northern Ireland presents distinct and significant challenges that require targeted responses. Key recommendations include the decentralisation of dementia services, improved transport support, more flexible care packages, structured guidance for carers using direct payments, and the introduction of accessible training and emotional support resources for informal carers. These findings aim to inform local policy and service delivery to ensure that rural carers are better supported in their essential roles.