Vulnerability of caregivers of people with a neurodegenerative disease: a synthesis

Abstract

The aging of the population and the increasing of the neurodegenerative pathologies encourage the current policies in health to further promote the home maintenance for dependent elderly people. Therefore, informal caregivers provide a substantial assistance to the medical team by monitoring home care. These volunteer caregivers who play an essential role in the survival of our health system however may expose to dangers of systematic assistance. In order to better understand the plural risks which caregivers are likely to face, this paper proposes a critical analysis of the consequences of caregiving on health and quality of life and summarizes factors that contribute to vulnerability - protection of caregivers. It seems caregivers will present very heterogeneous reactions in the way they are considering the care situation. Facing to many difficulties encountered, caregivers are dealing with their skills and adopt personal coping strategies. There is thus a wide range of fragility profiles and needs among caregivers. Better taking into account the multiple components of aid relationships paves the way toward possible new care perspectives by recognizing the specific needs of each caregiver with respect for its uniqueness. In this way only, we can effectively contribute to challenge one of the important and actual social issue: the prevention of global exhaustion of caregivers of people with neurodegenerative disease.

Keywords: aging; family caregivers; informal caregivers; neurodegenerative disease; role; vulnerability.