A Qualitative Study of Anticipatory Grief and Its Related Factors in Family Caregivers of Dementia Patients Living at Home

Abstract

The purpose of this study was to clarify the experience of anticipatory grief in dementia family caregivers. The participants were 12 main family caregivers of dementia patients living at home. The method used was a semi-structured interview; the data were analyzed qualitatively and inductively. The results showed that the families whose members had dementia went through three phases of anticipatory grief. First, non-death loss emerges in the form of two categories "loss of patient's important characteristics" and "the loss of assets important to the family caregiver." Next, anticipatory grief as an emotional response to the non-death loss develops, comprised of "inability to accept the situation," "inability to control anger," "feelings of intolerance," "feelings of responsibility for all," and "anxiety and loneliness." Finally, adaptation evolves that is comprised of "acceptance of the illness," "maintaining affection and interest for the dementia patients," "being with the dementia patients" and "finding meaning in their loss." Furthermore, "relationship" and "recognition of social support" emerge as factors to promote or hinder the above three phases. In this study, by regarding the anticipatory grief to be an adaptive process for the non-death loss, support for the family caregivers was discussed.