[Amyotrophic Lateral Sclerosis - Challenges of Family Caregivers]

Patients who suffer from amyotrophic lateral sclerosis sometimes show pathological changes in behaviour and cognition. Some even develop frontotemporal dementia. The family caregivers of the patients are faced with additional challenges.

To describe the effect of changes in behaviour and cognition on the emotional state and the perceived stress and burdens of family caregivers.

Different search terms were used for searching in several databases. Ten trials were included in the study. Further examinations of this topic on the basis of additional literature are described in the discussion section.

Changes in behaviour and cognition can lead to symptoms of anxiety and depression in family caregivers. The findings also show a correlation between apathy, disinhibition and executive dysfunction combined with an increase in caregiver burden.

Changes in behaviour and cognition in patients with ALS have a negative impact on the emotional state of family caregivers and contribute to increased feelings of being burdened. Early and detailed information concerning possible disease-induced changes is necessary.