The path through the unknown - the experience of being a relative of a dementia-suffering spouse or parent

Aims and objectives To examine the experiences of relatives of a spouse or parent who suffers from dementia and examines whether there are similarities or differences between these experiences. Background Dementia is an increasing illness in the world. Dementia affects not only the person with dementia but also the relatives. There is a lack of knowledge about the experience of being a relative to a dementia-suffering person. Design and methods Twenty-one stories from relatives were included in this study, and these stories were analysed by employing Kirsti Malterud's method ‘systematic text condensation’. The relatives were divided into four groups: sons, husbands, daughters and wives. Results Eight themes were identified in their stories, two in each of the four groups. From these eight themes, it was identified that they all experienced change, grief and negative personal sentiments. However, differences were also found, one of them being that the sons found it easier to adapt to new roles during the course of the illness, while the daughters found it more difficult. The husbands experienced being attacked by the people around them, while the wives were found to submit their dementia-suffering husbands to physical abuse. The wives also suffered from self-criticism. Conclusions The similarities between the four groups are more significant than the differences. Sons, husbands, daughters and wives of a person suffering from dementia should be considered on an equal basis in terms of their experiences of grief, change and personal negative sentiments. Relevance to clinical practice Relatives play a significant role in the well-being of their parent or spouse suffering from dementia. Therefore, professionals need to focus on both relatives and patient when they meet a person with dementia in clinical practice.