Accessing community dementia care services in Ireland: Emotional barriers for caregivers

Despite the benefits of utilising community-based care services (CBS) for people with dementia and their caregiver being well established, people with dementia and caregivers use fewer services in comparison to other people in need of care. While societal, cultural and logistical factors effecting caregiver use of CBS are frequently studied, research of internal emotional barriers, mental limitations created by one's own self that prevents open communication of thoughts and feelings, and their effect on CBS use is limited. This paper explores internal emotional barriers on caregivers' use of CBS within the Irish Healthcare System. Professional Healthcare Providers were also interviewed as a preliminary indicator of their awareness of these internal emotional barriers and their impact on caregivers' use of CBS. Using interpretive description methodology, interviews with 20 caregivers and fourteen dementia professional healthcare providers were transcribed and a thematic analysis methodology applied to illuminate themes/patterns within participants’ subjective perceptions of caregivers emotional barriers to using CBS. Four themes emerge: reluctance to question general practitioner (GP) authority; embarrassment during level of care requirement reviews; sense of obligation to provide all care; and fear of stigma. Caregivers interviewed were reluctant to communicate concerns with professional healthcare providers (PHPs), thereby reducing the PHP’s awareness of these barriers and delaying/preventing use of CBS. As key gatekeepers within the care pathway, GPs should address the uneven power dynamic with the caregiver through user-centred models of care, which actively encourage open dialogue, and receive training to identify the indicative behaviours of internal emotional barriers and empower the caregiver to communicate their feelings/concerns directly.