Experiences of living with dementia: qualitative content analysis of semi-structured interviews

Abstract

Aims and objectives: To describe people's experiences of living with dementia in Iran.

Background: A knowledge gap exists regarding the experiences of living with dementia in nonWestern contexts. This gap may be especially apparent within the Iranian context, where dementia research is relatively new. Deeper understanding about context-related experiences of dementia is a prerequisite for nurses' ability to provide adequate and meaningful care.

Design: Qualitative, cross-sectional design.

Methods: Qualitative content analysis of semi-structured interviews with people living with dementia in urban Iran (six women and nine men; 60-87 years old).

Results: The participants experienced their condition as a state of forgetfulness that was accompanied by losses and dependency on others. They wanted to feel good about themselves and feel important, but they continually struggled with matters such as a loss of accountability, feelings of futility and the frustration of others. Economic dependency and a lack of economic resources were sources of feelings of futility.

Conclusion: Experiences of living with dementia in Iran included a substantial struggle to stay connected to the social world and to deal with dramatic life changes, aspects of living with dementia that seem to be universal. However, the feelings of financial burden and the experience of being nagged for their shortfalls by family members have seldom been described in other studies and seem to represent a cultural aspect of their experience.

Relevance to clinical practice: The results of the study call for further nursing efforts in supporting people living with dementia in their struggle with their altered lives and in retaining their connections to everyday life. Furthermore, their family members might benefit from specific nursing interventions including information about dementia and advice on how to help the family members with dementia to interact with others while exercising their individual strengths.

Keywords: Iran; content analysis; dementia; gerontology nursing; life experiences; qualitative studies; semi-structured interview.