In parallel with employment, family members take on considerable coordination and organisation responsibilities to ensure nursing and medical care for their relatives. This also includes clarification on social security issues that are often very time-consuming and emotionally stressful. These are the findings from interviews with relatives of people with dementia in the “work & care 1”
Owing to their wide-ranging activities throughout the course of their relatives' illnesses, family members providing care are also often described as “unofficial case managers”. What this means is that they are the ones pulling the strings when it comes to the care of their dependent relatives. They are often the only people who have a complete overview of the care and treatment pathway. These coordination and cooperation responsibilities certainly sap their energy, as they are also responsible for providing the care and running the home. When these relatives are also in employment themselves, the workload is especially difficult to manage.
In the project “Case Management – relief potential for working relatives providing care” Careum Research developed a profile for family-orientated case management, with financial assistance from the Paul Schiller Foundation. The results have been published in the “Case Management” journal.
Bischofberger, I. (2010). Case Management – Entlastungspotenzial für erwerbstätige pflegende Angehörige. Case Management, (1), 31-33. PDF