與失智症患者同行：關係義務感與韌性是否會緩解照顧者的負擔與哀傷？

目的：不管是在國家政策、社會議題、學術研究及臨床實務上，失智症照護得到的關注與重視越來越多，然而，儘管許多機構、資源確實為失智症照顧提供了很大的幫助與支持，由家屬在家照護仍是多數失智症患者的照顧形式。當失智症患者的家屬承擔起照顧責任而實行照顧事務時，照顧者會因此有多向度的身心反應，也會於此過程中因不同原因有了失落的感受，這些感受便構成了照顧者的負擔與哀傷，與此同時，台灣失智症的照顧者因文化、傳統價值的影響，可能會傾向於視照顧失智症患者為自己的責任，內在亦有對患者付出的義務感受，此義務感受與照顧者內在的心理韌性，以及所處家庭之特性會如何影響照顧者的照顧處境與照顧者的調適，即是本研究有意探討與瞭解的方向，因此，本研究嘗試瞭解照顧者的負擔、哀傷、關係義務感、韌性以及其他情緒調適間之關聯，且透過不同失智嚴重程度、失智迄今時間、與患者親屬關係、參與陪伴或照顧的人數等不同分組方式，以及使用階層迴歸分析、差異檢定等統計方法，來探討照顧者的哀傷、關係義務感及韌性於照顧脈絡中之角色。方法：本研究透過醫院、日間照顧中心以及知名網路平台等管道，招募失智症患者之家屬，有效樣本235位，平均年齡46.75歲（標準差為15.40歲），參與者於知情同意後，完成照顧者負擔量表-12題、照顧者哀傷量表短版、關係義務感量表、中文版成人心理韌性量表、家庭韌性量表、台灣簡明版世界衛生組織生活品質問卷以及憂鬱、焦慮及壓力量表-21題等量表。結果：（1）照顧者的負擔與哀傷與失智患者之失智嚴重程度、失智迄今時間無顯著相關；（2）關係義務感不能預測照顧者的負擔與哀傷，但對高關係義務感的照顧者而言，當失智患者失智嚴重程度較重，照顧者會有較高的負擔與哀傷；（3）心理韌性能預測照顧者有較好的調適，並且，不似高心理韌性的照顧者，對低心理韌性的照顧者而言，失智迄今時間可正向預測照顧者負擔；（4）家庭韌性能預測照顧者有較好的調適，包括當參與陪伴或照顧的人數較多時，照顧者會有較好的調適。討論：研究顯示照顧者因各自處境不盡相同，其負擔與哀傷並非對應於失智患者失智嚴重程度、失智迄今時間；關係義務感於患者失智初期有助於照顧者的調適，但至失智晚期，照顧者可能因無法於照顧中實行想實行的義務，反而不益於照顧者調適；此外，心理韌性與家庭韌性都有助於照顧者的調適，但對照顧者有不同面向的幫助。據之，本研究提出對未來研究與臨床應用的建議。

關鍵字

照顧者負擔；照顧者哀傷；關係義務感；韌性；失智症照顧者

並列摘要

OBJECTIVE: Dementia caregiving is getting more and more attention in respect to policies, social issues, researches, and clinical practices. Diverse resources including dementia clinic and day care center support the dementia caregiving, but those are not enough for dementia caregivers. Nowadays, home-care is the mainstream of dementia caregiving, where dementia member could have great influence on her/his family members. Taking the responsibility of caregiving, caregiver would have different aspects of physical and mental response. Facing the losses due to different objects, caregiver would experience complicated and multiple grief. Such caregiver burden and caregiver grief would in turn have deep influence on caregiver’s health and coping outcome. Because of traditional culture and value, Taiwanese caregivers probably are inclined to view taking care of dementia patients as their responsibility and want to carry out the inner obligation toward patients. Besides, caregivers with different personal psychological resilience and family resilience would have different health and coping outcome in the context of dementia caregiving. Therefore, the study aimed to examine the relationships among caregiver burden, caregiver grief, sense of relationship obligation and resilience in order to explore the importance of the role of caregiver grief, sense of relation obligation and resilience in dementia caregiving. It’s also interesting to examine if there is significant difference of caregiver situation among different severities and times of dementia, relationship to the patient, and number of people engaging in caregiving. METHODS: A total of 235 participants from hospital, daycare center, communities and universities, with average 46.75±15.40 years, participated the study. Measures include 12-item Zarit Burden Interview (ZBI-12), Marwit-Meuser Caregiver Grief Inventory-Short Form (MM-CGI-SF), Sense of Relation Obligation Scale (SROS), Resilience Scale for Adults (RSA), Family Resilience Scale (FRS), WHOQOL-BREF, and 21-Item Depression Anxiety Stress Scales (DASS-21). RESULTS: (a) Severity and time of dementia did not correlate with caregiver burden and caregiver grief. (b) Sense of relation obligation toward dementia patient couldn’t predict caregiver burden and grief, whereas severity of dementia positively predicted burden and grief for caregivers with high sense of relation obligation. (c) Psychological resilience positively predicted better outcome and time of dementia positively predicted burden for caregivers with low psychological resilience. (d) Family resilience positively predicted better outcomes, especially for those caregivers who perceived more, relative to only 1-2, people engaging in caregiving. DUSCUSSION: The findings indicate that the situations caregivers faced are diverse and individual caregiver would experience personalized burden and grief due to all kinds of caregiving stress and loss. Therefore, caregiver burden and caregiver grief are not accounted for only by severity or time of dementia. People with more sense of relation obligation might feel better by carrying out the responsibilities but they might experience more burdens and grief when the dementia is getting more severe. Psychological resilience and family resilience may contribute positively to better care for dementia in subtly different ways for different caregivers. Finally, future research and clinical implications are suggested.