中老年人對失智症的認知與態度之質性研究：以台北市為例

Abstract

根據聯合國《身心障礙者權利公約》(Convention on the Rights of Person with Disabilities，下稱CRPD)之精神，應促進、保障及確保失智者完全及平等地享有所有人權及基本自由，以及擁有固有尊嚴及受到尊重。但長期以來，因大眾對於失智者的錯誤認知、負面態度等，使得許多失智者意見不被重視、常被開玩笑、向他人隱瞞自己患有失智症以及無法接受自己，甚至在社會上受到各種歧視、限制與孤立，這些都是臺灣或國際上失智者實際面臨的困境。這種情況將導致失智者延後就醫及降低診斷治療的意願，大幅提高失智症之照護成本，受苦的除了失智者也連帶影響其家人與社會大眾。 因此，了解人們對失智症的認知及態度便顯得十分重要。本研究採質性方法，在2022年12月13日至2023年6月30日止，以便利抽樣招募40名中老年民眾進行半結構式訪談及參與式觀察。接著，以不失受訪者原意之逐字稿並結合研究中之田野筆記進行分析，梳理台北市民眾對於失智症之態度及認知，進而歸納出政策建議，同時也期望能改善臺灣失智者的治療和生活。 在本研究中發現，目前台北市大眾對於失智症的認知水準差異較大，與受訪者之地區、性別、年齡、教育程度無觀察到特定關聯，這可能與研究人數、規模、地區差異不大等因素相關。但訪談中發現「認知」與「照顧經驗」相關，且民眾時常將「健忘」與「失智症」混為一談，遂而產生「失智症是正常老化現象」之想法。而在失智症態度中，台北市民眾大多中立偏正面，表達願意體諒、同情的善意，僅有極少數民眾抱持著偏見、異樣眼光看待失智者，以民眾的眼光也認為台灣的社會大眾「好人多過壞人」，但從CRPD的精神出發不禁讓人反思，為何失智者的生活須取決於身邊好人多寡？另外，以「時間」來看，多數受訪者都認為民眾對於失智症的認知及態度與過去相比，有明顯變好的傾向，這與大眾知識、資訊量的提升以及近年愈發頻繁的接觸失智症有關。 綜合上述以及受訪者反饋，短期內政府應滿足失智家庭急迫的「24小時照顧需求」，除了提升本國籍照服員投入全日照顧市場之意願，同時也能設計一個兼顧本國籍照服員與外籍看護權利的政策，使民眾逐步回歸使用國內長照體系。而在中期，建議應穩定且充足長照之財源，不僅能挹注至長照人才培養，也能加速長照資源之佈建，進而擴大照顧層面。最後以長期來看，主要針對觀念之改變提出建議，對「民眾」來說，錯把「服侍」當「照顧」可能會加速尚未完全失能長者之失能狀況。對「政府」來說，應從頭以CRPD之角度檢視台灣目前失智、長照政策，不僅「鬆綁」家庭照顧者之照顧責任外，也應以「社會模式」之觀點提供我國障礙者自我選擇、負責之機制與政策，無須在意他人眼光，實現真正的平權。

The full and equal enjoyment of all human rights, fundamental freedoms, and inherent dignity of persons with dementia shall be respected, protected, and promoted, according to the United Nations Convention on the Rights of Persons with Disabilities (CRPD). However, for a long time, due to public misperceptions and negative attitudes regarding dementia, many people with dementia have been neglected and often ridiculed, making them conceal their conditions from others and hardly accept the changes in life. Discrimination, restriction, and isolation are the lived dilemmas faced by people with dementia in Taiwan and internationally. This situation leads to reduced willingness for diagnosis and delayed medical treatment of dementia patients that have greatly increased the cost of care for them. Not only do the people with dementia suffer, but their families and the public are also affected. Therefore, it is important to understand people's perceptions and attitudes towards dementia. From December 13, 2022, to June 30, 2023, this study adopted qualitative methods and recruited 40 middle-aged and older adults through convenience sampling to conduct semi-structured interviews and participant observation. Then, this study analyzed the verbatim transcripts without losing the original meaning of the interviewees and combined them with the field notes in the study to sort out the perceptions and attitudes of people in Taipei City towards dementia. Lastly, according to the results, some policy recommendations were provided to improve health promotion policies and campaigns, eventually improving the treatment and life of persons with dementia in Taiwan. The findings of this study demonstrate that the current public knowledge towards dementia in Taipei varies greatly. This result has no specific correlation with the region, gender, age, and education level of the interviewees; it may be because of the number of interviewees, research scale and “little regional difference”. However, this study finds that “knowledge” is related to “caregiving experience”, and people often confuse “forgetfulness” with “dementia”, leading to the idea of “dementia as a normal ageing phenomenon.” In terms of attitudes towards dementia, most people in Taipei City are neutral to positive and often express goodwill and willingness to understand and sympathize. Only a few people hold prejudices and different looks toward people with dementia. From the perspective of interviewees, they also think that “nice people are more than mean people” in the general public of Taiwan. But starting from the spirit of CRPD, people can't help but think why the life of a person with dementia must depend on the number of good people around them. In addition, in terms of “time”, most interviewees believe that the public's knowledge and attitude towards dementia have improved significantly compared with the past. This is due to the improvement of public knowledge and information, as well as the increasing number of people with dementia and frequent exposure to dementia in recent years. Above all, and the feedback from interviewees, the government should meet the urgent “24-hour care needs” of families taking care of persons with dementia in the short term. In addition to increasing the willingness of domestic caregivers to enter the full-time care market, it can also design a policy that balances the rights of domestic and foreign caregivers. This will enable people to gradually return to the domestic long-term care system when they need care. In the mid-term, it is recommended that long-term care financial resources should be stable and sufficient, which can not only be used to educate long-term care talents, but also accelerate the development of long-term care resources, thereby expanding the level of care. Lastly, from a long-term perspective, the people who mistake “serve” for “care” may accelerate the disability of the older adults who are not completely disabled. For the government, Taiwan's current dementia and long-term care policies should be reviewed from the perspective of CRPD. In addition to “loosening” the care responsibilities of family caregivers, it should also provide self-selection, responsible mechanisms and policies for people with dementia from the “Social Model” perspective. Then, people with dementia can achieve true equality without caring about other people’s different eyes.