我們有所求，卻無從選擇：年輕型失智症患者就業經驗之探究

Abstract

「回歸職場、持續或再就業」是當今推行失智症政策中，對於年輕型失智症患者工作權實踐的目標。然而，年輕型失智症患者的就業光譜不同於過去協助一般身心障礙者「進入」就業市場，而是從勞動市場逐漸往外「退出」。正因為疾病他們「無從選擇」，「我們有所求」卻成了他們最難以開口的內心聲音。 本研究旨在探討年輕型失智症患者之就業經驗，從年輕型失智症患者生命脈絡出發，藉此了解他們對於疾病適應、就業經驗感受與詮釋，從中發現「就業」對於年輕型失智症患者的意義。 本研究採立意及滾雪球抽樣，抽樣設定65歲以下確診為失智症；其障礙程度診斷為「輕度」或CDR>1或MMSE介於18~24分，可理解與互動表達並陳述個人就業經歷與感受。主要採用質性研究方法中敘事研究方法，選取6位年輕型失智症患者，分別為4位男性、2位女性，年齡介於50歲至62歲，採用半結構式訪談，分別進行二至三次的深度訪談，後將訪談內容謄為逐字稿，輔以訪談紀錄之非口語訊息，再以敘事分析方法中「整體—內容」及「類別—內容」進行分析，歸納六位研究參與者在就業經驗中所面臨的處境、歷程階段。 本研究發現如下： 一、在疾病確診後，年輕型失智症患者無法獨自訂定工作的策略與規劃；不願意向雇主揭露表明障礙身份，擔心會因此而失去工作或是雇主仍無積極作為，亦難有職務的調整；而中高齡就業、難以通過的試用期、遭受到職場霸凌等經驗，讓年輕型失智症患者皆處於雙重弱勢。最終仍須面對失業與退休議題。 二、現有的年輕型失智症就業服務方案光譜偏向庇護型就業，實質上的樣態(工時、薪資與勞動權益)皆不及於庇護性就業，使得年輕型失智症患者的就業方案至今仍難有好的定位，更難以推廣或延伸。 三、年輕型失智症患者，在罹病後會面臨到「不斷擺盪」後才逐漸退出勞動市場，直到不再被接受時，才選擇退休或離開。因此，「就業」不應成為他們唯一選擇，而是應該有其他的安排，如：鼓勵結合過去專長擔任志工、講師，抑或是做「有意義的事情」，如：重新學習興趣、甚至是開始準備退休。 四、「持續就業」對於年輕型失智症患者意義：(一)想要賺錢養家；(二)付出回饋感；(三)技術的傳承；(四)不想因為疾病而依賴家庭，仍想要經濟獨立。年輕型失智症患者對於「角色」期待與行使，不會因為疾病事件而放下過去角色，角色是具有延續性的，經驗的傳承亦是。 五、而「家庭」對於年輕型失智症而言，是他們重整自我的關鍵力量，更是他們能持續往前的動力。 六、歸納出六位年輕型失智症的就業需要經歷「一連串」的適應歷程階段，而疾病事件發生時間所呈現的生命脈絡及家庭生命週期會影響就業歷程變化。依其就業歷程約略分為三個主要階段：(一)「疾病確診初期到獲得診斷前」—未知與失落期、不知是否就業的猶豫期、希望的重建期；(二)「疾病事件確診後」—工作勝任度與壓力期、工作目標不斷調整期、職場雇主回應與自我平衡期、面臨退休及失業期；(三)「重新規劃生活期」。

'Return to work, continuity or re-employment', is the goal of today's dementia policy with regard to the implementation of the right to work for young onset dementia patients. However, the spectrum of employment for young onset dementia patients is different from that of the past. When people with mental and physical disabilities were assisted to 'enter' the job market, instead it is a gradual 'exit' from the labor market. Because of the disease, they have 'no choice'; 'we have something to ask' has become the most difficult inner voice for them to say. The purpose of this research is to investigate the employment experiences of young onset dementia patients, and to understand their feelings and interpretations of disease adaptation and employment experiences from the life cycle, in order to discover the meaning of 'employment' for young onset dementia patients. The research was conducted by intentional sampling and snowball sampling. The sample was set under 65 years of age with a confirmed diagnosis of dementia. The degree of impairment was diagnosed as 'mild' or CDR>1 or MMSE score between 18 and 24. Individuals were able to understand and interact with each other to express and describe their employment experiences and feelings. Narrative research of qualitative research method was used as the primary qualitative research method. Six young adults with dementia, four males and two females, aged 50 to 62 years, were selected. Semi-structured interviews were conducted in two to three in-depth interviews, and the interviews were transcribed into verbatim transcripts, supplemented by non-verbal messages from the interview record. The narrative research method of 'whole-content' and 'category-content' was then used to summarize the situations and stages of the employment experience of the six participants. The findings of this research are as follows: 1.After the diagnosis of dementia, young onset dementia patients are unable to formulate work strategies and plans on their own; they are reluctant to reveal their impairment to employers for fear of losing their jobs or having no positive action from their employer and having difficulty in adjusting their duties. The experience of middle-aged employment, difficult probationary periods, and workplace bullying put young onset dementia patients at a double disadvantage. Ultimately, the issues of unemployment and retirement must still be faced. 2.The spectrum of existing employment service programs for young onset dementia patients tend to be sheltered employment, and the actual patterns (working hours, wages, and labor rights) are not as good as sheltered employment. As a result, it is still difficult to position the employment program for young onset dementia patients well, and it is even more difficult to promote or extend it. 3.Third, young onset dementia patients will face 'constant oscillation' after the disease before they gradually withdraw from the labor market until they are no longer accepted in the labor market. At this time, 'employment' should not be their only choice, but there should be other arrangements. For example, they should be encouraged to combine their past expertise as volunteers, lecturers, or to do something 'meaningful'. For example, re-learning a hobby, or even starting to prepare for retirement. 4.The meaning of 'continuous employment' for young dementia patients: (1) the desire to earn money to support the family; (2) Give and get a sense of feedback; (3) the transmission of skills; (4) not wanting to depend on the family because of the disease, but still wanting to be financially independent. Young onset dementia patients expect and exercise their 'roles' and will not let go of their past roles because of the disease. Roles have continuity, and so does the transmission of experience. 5.For young onset dementia patients, 'family' is a key force in rebuilding themselves and a driving force for them to keep moving forward. 6.It is concluded that six young adults with dementia were summarized as having to go through a 'cascade' of adjustment phases in their employment. The life cycle and family life cycle of the time of the disease event will influence the changes in employment history. There are three major stages in the employment history: (a) 'From the initial stage of diagnosis to before the diagnosis' - the period of uncertainty and loss, and the period of uncertainty and hope rebuilding. (2) 'After the diagnosis of the disease event' - the period of job competence and stress, the period of continuous adjustment of work goals, the period of employer response and self-balance, the period of facing retirement and unemployment. (3) 'Life Re-planning Period'.