The consequences of dementia for relatives : A study of relatives descriptions through autobiographies

Dementia has become to be named the ‘relative’s illness’ as a result of the physical and psychological effects that the relatives experience, due to the fact that the patient goes through many changes within the course of the disease. In addition, individuals suffering from dementia receive more help from their relatives compared to individuals suffering from other diseases or disabilities. Therefore, it is important to address to relative’s individual needs connecting to the caregiving role. The aim of this qualitative study was to examine how relatives to individuals suffering from dementia are affected by the role of caregiving. We conducted a thematic text analysis of our empirical material consisting of three autobiographies, written by relatives of those suffering from dementia. By reading the material and categorising the topics the authors wrote about, three main themes were identified: Relatives as caregivers, Health effects of caregiving and Emotional strain. The results showed that the author’s experienced several different aspects of how they were affected as caregivers. For instance, all three author’s described how their role with their loved one changed. Another result shown was that the author’s experienced how their health deteriorated, both physically and psychologically, and it was repeatedly described how they felt lonely and forgotten. The authors also described how the caregiving role resulted in positive experiences such as personal development. Strongly prominent was the author’s experiences of how the dementia caused strong feelings of grief. In conclusion the findings highlight how important it is to shed light on the relative’s role and their wellbeing.