The Concealment of Family Caregivers of Persons With Early-Onset Dementia: Experience in the Process of Disclosing

Abstract

Objective: To describe and understand how the concealment feelings and behaviors of family caregivers of persons with early-onset dementia changed and were eventually disclosed as dementia progressed.

Method: Using a qualitative descriptive research design, data were collected through semi-structured interviews with eight family caregivers of persons with early-onset dementia.

Results & Discussion: “Wanting to maintain privacy,” “stigma,” and “wanting to protect self-image” were extracted as reasons for concealment and their background. In the process of disclosing feelings over time, family caregivers experienced “resistance to disclosure determined by the relationship with the other parson,” “evaluation of the effects after disclosure,” “a desire to fulfill their loved one’s wishes through disclosure,” “need for the support network that can be gained through disclosure which changes as dementia progresses,” “changes in self-stigma associated with disease acceptance,” and “external forces opening the door of disclosure.” These results suggest the need for support that makes a forecast for long-term care life, and that also assesses the family caregiver’s perceptions and values toward hiding or disclosing and understands their feelings.