Caregivers’ Experiences Seeking Hospice Care for Loved Ones With Dementia

Abstract

As the prevalence of dementia continues to grow, informal caregivers face unique challenges as they approach the end of life, and access to support and palliative care is often limited. I used a phenomenological approach to explore the experiences of caregivers actively seeking formal end-of-life care, in particular hospice care, for a loved one with dementia. In-depth interviews with 11 caregivers about 14 patients revealed five themes, including: setting the stage for heartbreak, reaching the boiling point, getting through the front lines, settling for less, and welcoming death. Nurses must recognize the complex needs of caregivers, educate caregivers on the disease process, and adjust to palliative goals sooner to meet the needs of caregivers. Prevalence of these issues must be further examined through quantitative study to evaluate the need to reconsider current hospice eligibility criteria based on prognosis.