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Chapter 2 - Caregiver Burden in Prader-Willi Syndrome

Published online by Cambridge University Press:  26 May 2022

By
Carole Filangieri  and
Deepan Singh
Edited by
Deepan Singh
Deepan Singh
Affiliation:
Maimonides Medical Center in Brooklyn
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Summary

Caregiver burden is multidimensional, adversely affecting the caregiver’s emotional, social, financial, physical, and spiritual functioning. Demographic risk factors for caregiver burden include female gender, low education, low socioeconomic status, and living with the care recipient. Psychosocial risk factors include caregiver depression and/or anxiety, lack of coping skills, and increased social isolation and decreased social activity for the caregiver. Caregiver burnout is a confluence of emotional exhaustion, detachment, or disengagement as a result of exhaustion without relief and the cynicism that can occur in a caregiver. Caregivers should be encouraged to make time for themselves. A peer group or PWS community can provide a safe outlet to discuss frustrations and emotional difficulties. Practicing mindfulness can reduce distress and increase resilience. When emotionally overwhelmed, caregivers can seek out a mental healthcare provider to help develop effective coping strategies. Healthcare providers can help reduce the risk of caregiver burden and burnout by assessing caregivers’ levels of stress and providing easier access to services.

Keywords

caregiver burdenburnoutself-careself-efficacysleep hygieneanxietyfood securitycommunitymindfulnessgratitude
Type
Chapter
Information
Neuro-behavioral Manifestations of Prader-Willi Syndrome
A Guide for Clinicians and Caregivers
 , pp. 8 - 17
Publisher: Cambridge University Press
Print publication year: 2022

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