輕度失智症患者之生活品質探討：家庭照顧者觀點

Quality of life in early stage dementia: Perspectives of family caregivers

我國失智人口數量迅速攀升。鑑於失智症病程與病徵特色，失智者多由家屬居家照顧，或接受社區式照顧服務。本研究採立意取樣邀請8位輕度失智症患者的家庭照顧者進行半結構深度訪談，從家庭照顧者觀點探討輕度失智症患者生活品質之維持經驗。研究結果發現：失智症出現認知功能障礙及精神行為症狀、逐漸喪失生活自理能力、社交退縮與共病等，不僅影響失智症患者的生活品質，連帶改變患者的行為表現及社會參與，甚至影響家庭互動。此外，家庭照顧者考量失智症患者的最大利益，維持失智症患者生活品質要件包含：1.在生理照顧層面：維持或恢復日常生活功能、維持規律生活、運動、配合醫師用藥；2.在心理照顧層面：維護自尊、正向情感表達、克制與調節個人的負向情緒；3.在社會支持層面：親友與社群網絡支持、善用社區服務資源；4.在居住安排及環境層面：居住安排同住與否的照顧管理，以及居住環境改造。最後，研究者按結論提出維持失智症患者生活品質之實務相關建議。

The population of persons with dementia is rapidly increasing in Taiwan. Given the characteristics of dementia’s progression and symptoms, most patients are cared for at home, with or without utilizing community-based dementia care services. This study, conducted with semi-structured in-depth interviews with 8 family caregivers, aimed to explore the experience of maintaining quality of life (QOL) in early stage dementia from the perspectives of family caregivers. The results revealed factors that affect dementia-specific QOL, including the appearance of cognitive dysfunction, behavioral and psychological symptoms of dementia (BPSD), gradual loss of self-care abilities, social withdrawal and co-morbidity. These factors also changed patients’behavioral performance and social participation; even family interactions were affected. Furthermore, four important domains acting in the best interests of dementia patients were identified to maintain QOL: (1) in the domain of physical care: to restore or maintain the ability to perform activities of daily living, lead a regular life, exercise, and access medical care services and medication; (2) in the domain of psychological care: to maintain self-esteem, positive emotional expression, restraint and regulate negative emotions; (3) in the domain of social support: to access support from relatives and friends, get assistance from broader social networks, and utilize community-based service resources; and (4) in the domain of living arrangement and environmental modification. Suggestions for practical work were made.