FTD is a pre-senile neurodegenerative disorder characterized by personality changes, alterations in social conduct, aphasia, and a decline in frontal cognitive functions. Recent studies have investigated behavioral disorders in FTD patients, but it is of equal importance to investigate the burden on caregivers as a result of these disorders in the patients. Additionally, it seems relevant to explore the well-being of the caregivers, i.c. occurrence of psychological complaints and quality of life
Objectives: To gain insight in the interrelationships between the burden of caregivers of FTD patients, their psychological complaints, and their quality of life
Design: The presented data are collected at baseline in a longitudinal study with a single-group design.
Material and methods: 63 FTD patients and their caregivers (e.g. spouses, children) were included. Caregiver burden was assessed twofold: 1) burden specifically related to behavioral disorders of the patient with the 2) overall perceived burden of caregivers with a visual analogue scale (VAS-burden). Psychological complaints were assessed with the Symptom Checklist-90, quality of life with the Short-Form Health Survey-36, and severity of the dementia was assessed with the Global Deterioration Scale. The method of multiple linear regression was applied of which the standardized regression coefficient was used as a measure of relative importance. In the model we adjusted for the influence of severity of dementia, domicile of the patient (living at home vs. hospitalized), age and gender of both caregiver and patient, and for the caregiver being either a child or spouse of the patient.
Results: First of all, NPI-burden was mildly related to the VAS-burden (r=0.24; p=0.06). Both types of burden were strongly, positively associated with psychological complaints and negatively with most of the quality of life domains. The highest associations were found for the domain 'mental health' (NPI-burden: ß=-0.54; p<0.00 and VAS-burden: ß=-0.46; p<0.00). Additionally it appeared that VAS-burden was inversely and significantly associated with the domains 'general health perceptions' (ß=-0.33; p<0.01) and 'change in health' (ß=-0.43; p<0.00), where the NPI-burden was only mildly though not significantly related to these domains (ß=-0.22; p=0.13 and ß=-0.20; p=0.19 respectively).
Conclusions: Both types of burden were positively associated with severity of psychological complaints and negatively with quality of life. Contrary to what we expected, the association between NPI-burden on the one hand, and 'general health perceptions' and 'change in health' on the other hand was minor, whereas the relation between VAS-burden and these domains was strong. As the relationship between VAS-burden and NPI-burden is minor, it is of clinical relevance to investigate which factors - besides behavioral disorders - may affect the overall burden.
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