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Family Caregivers of Persons with Frontotemporal Dementia: Factors Associated with Caregiver Mental and Physical Health

Abstract

Individuals with the behavioral variant of frontotemporal dementia (bvFTD) commonly manifest a wide range of different behavioral problems and neuropsychiatric symptoms (Snowden et al., 2001). Therefore, providing informal support to someone with bvFTD could be particularly stressful. It is important to acknowledge the well-being and contributions of bvFTD family caregiver. Currently, however, there is a paucity of research on the unique experiences of FTD family caregivers.

The purpose of this dissertation is to identify factors associated with the mental and physical health of FTD family caregivers. This dissertation will be presented as three publishable papers which are based on findings from a cross-sectional, correlational study on family caregivers of persons with FTD (with behavioral problems). Participants completed a set of questionnaires, which were submitted anonymously by standard mail. Data on 61 family caregivers were collected and analyzed.

The first paper focuses on the relationship between coping and caregiver health. This paper examines the coping strategies used by caregivers in response to patient neuropsychiatric symptoms and/or behavioral problems. Emotion-focused coping was positively associated with caregiver mental health, and problem-focused coping was positively associated with caregiver physical health.

The second paper focuses on the relationship between perceived control and caregiver health. There was not a statistically significantly correlation between perceived control and caregiver physical health. However, there was a strong, positive association between perceived control and caregiver mental health, suggesting that caregivers with greater perceived control tend to report better mental health.

The third paper focuses on the relationship between the severity of patient symptoms and/or behavioral problems and caregiver health. There was not a statistically significant relationship between caregiver physical health and patient symptoms. However, patient symptom severity was negatively associated with caregiver mental health. Caregiver emotional distress from patient symptoms/behavioral problems was negatively associated with caregiver mental health.

These findings reinforce the importance of examining the self-perceptions and unique needs of FTD family caregivers. The critical role of dementia family caregivers and the demands that they experience cannot be overlooked. Future qualitative studies on FTD family caregivers would be invaluable in providing a more in-depth understanding of their caregiving experiences.

Reference

Snowden, J. S., Bathgate, D., Varma, A., Blackshaw, A., Gibbons, Z. C., & Neary, D. (2001). Distinct behavioral profiles in frontotemporal dementia and semantic dementia. Journal of Neurology, Neurosurgery, & Psychiatry, 70, 323-32.

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