"Sidelined": Family Caregiver's Experience of the Emergency Department: Insights from Family Caregivers of People with Alzheimer's Disease

Abstract

Older patients with a cognitive deficit, such as seen in Alzheimer's Disease (AD), have not been extensively researched in ED. Often patients with AD are accompanied by a familiar person such as a family caregiver when they present to an acute care facility. Literature has shown that family caregivers' have reported dissatisfaction with interaction with healthcare professionals in inpatient settings. There is a paucity of research on the experiences family caregivers have in ED. This study explored the experiences of family caregivers of people with Alzheimer's Disease in the ED of a regional hospital in New Zealand. A Hermeneutic phenomenology method was used to bring meaning to the lived experience of family caregivers in the ED. Ricouers Interpretation theory was used to analyse and interpret the data. Six family caregivers were interviewed, using semi-structured interviews, to explore and give meaning to their experience. Findings revealed family caregivers were 'sidelined'; felt invisible, ignored and abandoned by the healthcare professionals in ED. There appeared to be little understanding about dementia symptoms, or the needs of caregivers of people with AD. The experience was distressing for participants who felt they were not able to relay information about their loved one that was pertinent to their health and presenting symptoms. Health Professionals tended to speak directly to their loved ones and not with the participants. Consequently there was a risk of misinformation and poor communication driving treatment decisions for these patients. Participants reported poor information giving and family caregivers were left for long periods of time with no contact, and no support. Despite this, caregivers justified and excused the actions of healthcare professionals. They became passive recipients of process and procedures that were not adequately explained.