• Jane L Givens, Holly G Prigerson, Rich N Jones, and Susan L Mitchell.
• Division of Gerontology, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA. janegivens@hrca.harvard.edu
• J Pain Symptom Manage. 2011 Aug 1; 42 (2): 183191183-91.

ContextThe effect of suffering among patients with advanced dementia on their family members' mental health has not been investigated.ObjectivesTo describe family members' exposure to distressing symptoms among nursing home (NH) residents with advanced dementia and associations between such exposure and family members' mental health.MethodsData were obtained from an 18-month prospective cohort study of NH residents with advanced dementia and their family member health care proxies (HCPs). Exposure to resident symptoms and associated fear and helplessness was measured quarterly using the Stressful Caregiving Adult Reactions to Experiences of Dying (SCARED) scale (range 0-120). HCP mental health was assessed quarterly using the Composite International Diagnostic Interview Short Form (CIDI-SF) (depression), K6 (psychological distress, range 0-24), and SF-12(®) mental health subscale.ResultsSeven hundred seventy-nine SCARED scale assessments were completed by 225 HCPs. The most frequent distressing symptoms were the following: feeling the resident had had enough (33.2%), choking (21.1%), and pain (18.9%). The symptoms eliciting the greatest fear were thinking the resident was dead and seeing them choke. A sense of helplessness was highest when the resident was observed to be in pain or choking. Family members with SCARED scores >0 were more likely to meet criteria for depression on the CIDI-SF (adjusted odds ratio [AOR] 2.59, 95% confidence interval [CI] 1.14, 5.85), have a K6 score >0 (AOR 2.31, 95% CI 1.55, 3.43), and have lower SF-12 scores (adjusted parameter estimate -1.51, 95% CI -2.56, -0.47).ConclusionFamily member exposure to distressing symptoms experienced by their loved ones with advanced dementia is not uncommon and is associated with worse mental health.Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

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