年輕型失智者使用長期照護服務經驗初探：從家屬與機構照顧者的觀點出發

A Primary Study on the Experiences of using Long-term Care Services with Young-Onset Dementia: from their families and carers

失智者為終身性的障礙者，需要多元的照顧與支持，然因年輕型失智症者為少數，鮮少被社會重視，無論在一般性和專屬性照顧資源都相當缺乏，亦無本土性實證性研究。本文探討年輕型失智者使用長期照顧服務的經驗，以能了解與老年性失智者在服務需求之差異性。本研究採用質性研究，以立意取樣，選取北部社區式與機構式之全職專業人員6名、年輕型失智者家屬2名，運用深度訪談法蒐集資料。研究發現年輕型失智症者延遲確診情形普遍存在，家屬經歷負荷過量，期待長照服務分擔壓力，才開展使用正式服務歷程。可知長照服務的使用決策為家照者，而非年輕型失智者。隨病程進展多僅短暫使用社區式服務後，即因病程退化而入住機構，影響年輕型失智者使用社區式服務之資格。研究建議宜對年輕型失智症照護實踐的意義和照顧之應用達成共識，有助於其權益受到尊重及保障。整合醫療及社會照顧模式，健全照護支持環境，建立本土化年輕型失智照顧之推動模式，是未來從居家照顧延伸至長期照護中不可或缺的共識。

"Dementia is a lifelong disability and requires multiple care and support services. The number of Young Onset Dementia (YOD) are a minority groups and often ignored by society. Regardless of the general and specific care resources there was insufficient, has not been explored yet. The aim of this study was to explore the long-term care services utilization with family caregivers and carers of people with YOD. This article presents the YOD situations, difficulties and prospects, recognition of the differences between YOD and senile dementia. This study applied qualitative research method with purposeful sampling. The semi-structured and in-depth interview was adopted. The data was collected from 2 family caregivers and 6 professional carers. The results revealed the issue of delays in the diagnosis of dementia is of vital importance for YOD. It is difficult to find anything appropriate to meet YOD needs, it is a lengthy and frustrating process, and it often means that recognition of the specific difficulties faced by family caregivers. The decision-making process of long-term care services utilization by family caregivers rather than YOD. As the disease progresses, after using community-based services in a short period of time, move into the residential care facilities. The study recommended that increasing efforts are being devoted to studying that to enhance a better consensus on the meaning and application of YOD specific and generic care practices. Integrating the health care and welfare services model, to improve the quality of care and quality of life with YOD patients and family members. To establish a sufficient information and delivered sensitively model is an indispensable part from homecare to long-term care facilities in the future."