Family Carers of People with Young-Onset Dementia: Their Experiences with the Supporter Service

Abstract

Background: Family carers and people with young-onset dementia (YOD) require tailored assistance as dementia progresses. A variety of health care services is needed, including supporter services. To our knowledge, research focusing on experiences with the supporter service is scarce. Aim: To evaluate the supporter service by examining how primary family carers experience the assistance provided. Method: Qualitative interviews with 16 primary family carers of people with YOD were performed from 2014 to 2015. Content analysis was used to analyze the data. Results: Three main themes emerged from the interviews. First, a good match focused on the carers' experiences of the relationship between the supporter and the person with YOD and included three subthemes: a nice, empathetic personality, a friendship-like relationship, and the content of the meetings. The second theme, relief, addressed the carers' experiences with the service. The third, coordination, concerned the carers' relationship with the health care service. Conclusion: Developing tailored services and assistance initiatives is important. A well-organized supporter service is a valuable supplement to formal programs and should be developed as part of an overall support package.