Frontotemporal dementia: change of familial caregiver burden and partner relation in a Dutch cohort of 63 patients.

BACKGROUND/AIMS The current study examined the change of caregiver burden and the development of the quality of the partner relation in frontotemporal dementia (FTD). METHODS During a 2-year period, deterioration, behavioural problems, caregiver burden, general psychopathology, quality of life, social support, coping strategies and relationship quality were inspected in 63 FTD caregiver-care recipient dyads. RESULTS After 2 years patients reached maximum dementia severity with stable Neuropsychiatric Inventory levels. Contrary to expectations, caregiver burden decreased and psychological well-being remained stable. Coping style and social support changed unfavourably. Relationship closeness and getting along were preserved, whereas communication and sharing viewpoint on life were dramatically reduced. CONCLUSIONS FTD caregivers need support in coping with the increasingly hopeless situation of their patients. Future research methods into caregiver burden should address response shift as a means for psychological adjustment.