Har han det bra så har jag det bra

: ett aktionsforskningsprojekt där ett närståendestöd planerades i samarbete med närstående till yngre personer med demenssjukdom

Abstract

Living together with a younger spouse who is suffering from dementia requires that relatives are offered support. The aim of this Participatory Action Research (PAR) project was to, in collaboration with relatives, plan support for relatives to persons with dementia below 65 years of age. PAR is an interactive research method based on reflection, analysis and action. Two groups of relatives participated in focus groups at three occasions and data were content analysed. Relatives were wives or husbands to a younger person with dementia. Findings showed that relatives pass through a similar transition process as the person. It is important to offer individualized support initially, support that needs to be changed as the disease proceeds. Furthermore, the study showed that if relatives shall manage their own anxiety, uncertainty, and feelings of loneliness, emotional support is necessary. However, it is impossible to just offer direct support to the relatives without considering the sick persons’ needs. Finally, a personal guide that could follow the couple trough the entire process would be of importance.