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Caregiver Burden, Health-Related Quality of Life and Coping in Dementia Caregivers: A Comparison of Frontotemporal Dementia and Alzheimer’s Disease

The aim of the current study was to differentiate Frontotemporal dementia (FTD) caregiver burden from Alzheimer’s disease (AD) caregiver burden. This approach was chosen because the general and the medical public are well aware of AD and AD caregiver burden has been studied quite extensively. AD therefore, was an ideal starting point for the comparison. Our aim was to elucidate the specific dementia symptoms that might be burdening FTD caregivers and the differential influence of dementia type on caregiver burden, health-related quality of life (HQoL) and use of coping strategies. The burden that caregivers experience as a consequence of the caring process is a major determinant of patient institutionalization. Maintaining HQoL in the process of care is an essential component of psychological wellbeing of caregivers, which, in turn, may affect the quality of provided care. Furthermore, it is important to understand which coping strategies are adequate in relieving caregiver burden and maintaining HQoL and whether these are dementia specific. A recent study compared FTD and AD neuropsychologically and functionally and found that FTD patients were more severely affected, suggesting that caregiving in FTD possibly has a greater impact on caregivers than caregiving in AD. Given the greater impact on social conduct and the more prevalent behavioral disturbance in FTD, we expected caregiver burden to be greater, HQoL to be more decreased and coping strategies to be used more intensively.

FTD caregivers in our study were more heavily burdened by the caring process than AD caregivers. Caregivers of FTD patients institutionalized after relatively shorter dementia duration were most burdened and affected in their HQoL. We therefore recommend that caregivers of FTD patients be offered improved and intensified support and that special attention be paid to caregivers of already institutionalized patients. Furthermore, we suggest that interventions aimed at relieving burden and improving HQoL of caregivers target the inadequate coping strategy of passive coping. Further research will be necessary to assess what factors cause caregiving in FTD to be more burdening than caregiving in AD.


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