Abstract
OBJECTIVE: The sense of competence (SC) of informal caregivers of frontotemporal dementia (FTD) patients is important for their task but has rarely been assessed. Here, the relationship between caregiver burden and SC and the differential value of SC in understanding caregiver suffering were studied. METHODS: At 24 months of follow-up patient behavioural problems, dementia severity, caregiver SC, burden, psychological complaints and quality of life were inspected cross-sectionally in 46 caregiver/care recipient dyads. RESULTS: SC was unrelated to dementia severity and patient behavioural problems. Principal component analysis of SC revealed 3 dimensions: 'emotions', 'attributions' and 'sacrifice'. Sacrificing one's personal life to caregiving was associated with more psychological complaints and a worse physical and mental quality of life, as found in structural equation modelling. CONCLUSIONS: Caregiver suffering comprised an unbalance between self-care and caring for the FTD patient. FTD caregivers may benefit from psycho-education on self-care and methods to create time for their personal needs.
