Decision Making at the End of Life in Dementia: How Family Caregivers Perceive Their Interactions With Health Care Providers in Long-Term-Care Settings

Abstract

Makingend-of-lifecare decisions in the context of dementiais complex. As people with advanced dementia are in capable of deciding about their own care, family caregivers often become involved with health care providers in the decision-making process to ensure the best care for their loved one. Using a grounded theory approach, the experience of family caregivers in making such end-of-life care decisions was explored. Twenty-four caregivers were interviewed. The results show that caregivers evoke five dimensions when considering these decisions. One dimension, the relationship with health care providers, emerged as vital to their experience. Four elements of this relationship are presented in this article: quality of the relationship, frequency of contact, congruence of their values and beliefs with those of health care providers, and the level of trust. In an era that promotes partnership with families in long-term-care settings, care standards are needed in order to guarantee family participation in achieving quality dementia care.