失智症家庭照顧者之受苦與因應經驗研究

Suffering and Coping Experiences amongst Family Caregivers of Dementia Patients

本研究旨在探究失智症家庭照顧者在照顧失智親人過程中主觀的受苦及因應經驗。採用詮釋現象學研究方法，邀請四位自願受訪者，以半結構深度訪談蒐集的文本資料來分析。結果：失智症家庭照顧者之受苦經驗內涵為：對失智症的無知和退化進展束手無策；漫長病程變數多，長期照顧的考驗層出不窮；無法由失智親人確知其需求，常處在矛盾疑惑和不安自責中；經歷關係失落的痛楚，只能持續單向地對失智親人付出；照顧者對其他家庭及工作的角色責任感到拉扯虧欠；照顧者常感孤軍奮鬥，為難於手足支持不夠或照顧意見相左。失智症家庭照顧者之因應經驗內涵為：照顧的動力來自維持與失智親人的關係連結；照顧互動是依循失智親人的生命脈絡去滿足雙方的需求；照顧的主控感在於專注此時此刻的陪伴，珍惜當下雙方的相處；照顧過程有賴專業照護系統的支援；照顧的力量來自於對失智親人不離不棄的意志力，接受承擔照顧責任；照顧的成就在於盡心盡力達成子女的角色責任，了無遺憾；照顧者從照顧經歷覺察對自己身體的照顧，體悟老化與死亡，學習愛。研究結果可為失智症家屬提供經驗借鏡，並指引出助人者對待照顧者的視角。

The purpose of the present study was to make manifest the subjective suffering and coping experiences of family caregivers of dementia patients. A hermeneutic phenomenological approach was chosen to analyze the essential themes. Data was collected through semi-structured， in-depth interviews from four volunteer families of dementia patients. Themes revealed the suffering experiences of dementia family caregivers， which included: feeling helpless and having a lack of control with regard to the onset and progression of dementia; facing constant challenges during the long-term caregiving process; feeling skeptical and uncertain， and blaming oneself due to the inability to fulfill the patient’s needs; experiencing distress from the diminishing relationship and continual offering of one-sided affection to the patient; bearing strain and guilt for taking on the responsibility of multiple roles; perceiving difficulties with insufficient sibling support or conflict， and feeling isolated while fighting a lonely battle. The themes for the coping experiences of family caregivers of dementia patients were: sustaining motivation by maintaining a relationship bond; maintaining interaction and fulfilling the needs of both sides according to the patient’s life context; being autonomous and gaining control by focusing on and cherishing the here and now; relying on assistance from professional systems; empowering the self through one’s own willpower and actively taking responsibility; fulfilling oneself by doing one’s best to accomplish filial duty without regret; gaining self-awareness of one’s health， aging， and death issues through the lessons of love. These findings could offer practical information to family caregivers of dementia patients and remind professional helpers how to communicate with family caregivers.