Hindering Factors and Perceived Needs for the Decision Making of Advanced Directives Among People with Dementia and Their Families.

Abstract

Making advanced directives is challenging in Asia. The hindering factors and perceived needs for advanced directives for people with dementia and their families have not been fully explored in Taiwan. In this study, we aimed to identify the barriers and perceived needs of people with mild dementia and the families of people with dementia within the cultural context of Taiwan for advanced directives. A qualitative descriptive design with purposive sampling and content analysis was used to collect and analyze the data. Thirteen people with mild dementia and thirty-two families of people with dementia were recruited. Our findings indicated that the hindering factors for people with mild dementia and the families of people with dementia to make advanced directives included "talking about death is a taboo", "the timing is not right", "cultural values of filial piety", "male protagonist's social status", and "insufficient information on advanced directive". The perceived needs for participants in making advanced directive decisions were "a wish to die without suffering", "wanting to rely on others to make a decision", and "an increased awareness of information". This research offers valuable insights into the barriers and needs related to advanced directives for people with mild dementia and the families of people with dementia in Taiwan. These findings address the identified challenges and needs to develop effective solutions to help healthcare providers to better facilitate the decision-making process for advanced directives.