失智老人的生活空間變遷

Abstract

台灣失智症患者據估計約十四萬人，老人罹患失智症對其家庭影響甚鉅，然而，國內目前有關失智症照顧的研究雖不在少數，但它們不是偏重探討軟體服務的輸送，就是只聚焦於機構化的照顧環境。因此，本研究嘗試將失智老人居家照顧的經驗，融入其生活空間的調整與變遷中來討論，不只涵括實質空間，也包含社會人際網絡，以期了解這些人們和環境的關係。 我採用的主要研究方法為深入訪談，共計有18個長期照顧居家失智老人家庭的成員受訪，並與五位失智老人進行非結構性訪談，此外亦採用生活空間認知圖、環境現況評估，以及參與式觀察的方法收集資料輔助分析。經過研究資料蒐集並回頭參考文獻後，我決定以參考並調整Rowles(1978)與蔡淑瑩(2001)對老人地理經驗研究所提出的生活空間模型，來分析受訪失智老人及照顧家屬的生活空間營造經驗，分析層次為家、雙重監視區、生活與社會鄰里、鄰里之外，以及想像的地理經驗。 研究結果發現失智老人家屬對於老人生活空間的營造，事實上是一個不斷進行調整的動態過程，家庭中通常都會出現一名成員主責老人的照顧相關事務，他們一方面必須對老人家的狀況變化作出回應，另一方面也需要在照顧理念、家庭狀況與關係，以及個人能力之間進行不斷的磨合與調整，以期創造他們可以對失智老人照顧安心，同時也儘可能繼續維持自己基本生活要求的生活空間。在生活空間的調整上，家屬最重視的是失智老人在環境中的安全性及便利性，也有家屬會安排對老人家具適當刺激的環境，讓他們多接觸熟悉的事物及活動，或是與增加老人與他人互動的機會。家屬除了對家中實質環境做出變更，也會安排相關活動加以輔助，此外，老人和照顧家屬之間的關係也會因長者狀況和照顧需求而產生變化，而他們的外出活動模式也需要重新調整。 雖然每位失智老人表現出來的症狀不一，每個失智老人家庭生活空間的變遷過程也不盡相同，但大致上來說仍可從這些受訪家庭的經驗中歸納出其生活空間變遷的主要方向：當老人家愈往重度失智發展，家屬為他們營造的生活空間中，家環境所佔比重愈加提高，鄰里或鄰里之外的活動都很可能減縮。對於一些行動不便或是難以自行外出的失智老人而言，雙重監視區則是重要的觀看並與外界進行連結的管道，由於老人位於視線範圍之中，家屬亦能確保老人的安全。除了生活能力日漸衰退之外，老人一些狀況的出現，譬如走失、體能與行動能力的退化，或是當他們表現出錯亂的時空定向感時，都可能促使家屬在短期內重新調整他們的生活空間。 家屬和失智老人的生活空間屬於高度相關的共變關係；大多數家屬會調整老人的生活空間，好讓自己得以掌握大部份的基本生活及照顧事務，少部份家屬由於兩人關係較難著力改變老人的生活空間，因而轉以調整自己生活空間的方式，或是引入社會鄰里等資源的協助，來因應不斷變化的照顧需求。許多內外在的作用力量都影響了家屬對於失智老人生活空間的調整過程，老人家因高齡以及因失智而來的症狀變化、家庭狀況、家庭關係及資源，還有社會資源與居住區域等大環境的不同，都使得這些家庭營造出來的生活空間各不相同。

The number of people afflicted with dementia in Taiwan was estimated to be about 140,000, among which the majority receive informal care given by family members. In order to create a better living environment for people with dementia and their caregiving family, it is essential to understand the changes in their life space, including both physical environments and social interpersonal networks. The major research method employed is semi-structured interviews with members in 18 families caring for relatives with mild to severe dementia. In these families 5 people with dementia participated in the study with non-structured interview. Cognitive mapping, physical enivorment assessment, and participatory observation were also used as multi-research methods. The life space frameworks proposed by Rowles(1978) and Tsai(2001) were modified to analyse the life space modification experiences of people with dementia and of their caregiving family members. The aspects of their life space consist of home, double surveillance zone, living neighborhood, social neighborhood, and fantasy. It is found that the life space of most people with dementia undergoes notable changes, and family caregivers play a key role in this dynamic change process. Family caregivers would accommodate their home to the safety and convenience of the person afflicted. They might also attempt to create a living environment—by spatial modification and activity arrangement–that can provide moderate stimuli for the elderly. Besides, the relationship and interaction pattern between the person with dementia and the caregiving family member also need some adjustment. As to life space beyond home, family caregivers would usually attempt to modify the outdoor activity patterns of people with dementia. To those elderly who are not allowed to go out by themselves or those whose mobility is limited, double surveillance zone may serve as a significant channel to get connected with the outside world. As the person with dementia stays at (or near) home to get in touch with the outdoor environment, family caregiviers can also make sure of their safety and well-being. Great heterogeneity exists in these families’ experiences of dementia home care and life space modification. A major changing tendency of their life space can be observed, however. As dementia progresses, the life space of the people afflicted concentrates more and more upon home environment. Activities inside or beyond their living neighborhood would most likely decrease. The occurrence of some events usually prompts family caregivers to modify the life space of people with dementia. Once the persons with dementia get loss or their physical strength and mobility declines to certain degree, or as they begin to show serious time and space disorientation, their life space might face further compression. A variety of factors influence the dynamic changing process in which family caregivers try to shape a suitable caregiving life space for people with dementia. On the one hand, family caregivers need to respond to the elderlys’ changing conditions whether from their ageing or from their cognitive and noncognitive symptoms. On the other hand, family caregivers try hard to find balance among internal factors such as caregiving values, family conditions, family relationships, and resources, as well as external and structural factors such as social welfare accessability and living area environment. The life space of family caregivers turns out to be in covariation with that of people with dementia. In order to take control of caregiving and living requirements, most family caregiviers would modify the life space of the elderly carereceiver. In this modification process the caregiver’s own life space also undergoes changes to different extents. Some family caregivers, on the contrary, find it hard to alter the life space of the people with dementia due to the dyad’s relationship. They resort to changing their own life space or help from social networks so as to react to constantly-changing caregiving requirements.