题名

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

并列篇名

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

作者

王潔媛(Chieh-Yuan Wang);楊秀珍(Shiou-Jen Yang)

关键词

年輕型失智症 ; 長照服務使用 ; 失智照顧 ; Young-onset dementia (YOD) ; Long term care utilization ; Dementia care

期刊名称

臺灣社會工作學刊

卷期/出版年月

24期(2021 / 08 / 01)

页次

1+3 - 45

内容语文

繁體中文

中文摘要

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。

英文摘要

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.

主题分类 社會科學 > 社會學
参考文献
  1. 吳怡慧,林明憲(2017)。失智照護。臨床醫學月刊,79(1),19-25。
    連結:
  2. 施姵宇,古鯉榕,白明奇,劉立凡(2018)。失智症家庭使用長期照顧服務的情形與不使用的原因。臺灣公共衛生雜誌,36(4),375-385。
    連結:
  3. 黃莉雯(2016)。國立暨南國際大學社會政策與社會工作學系。
    連結:
  4. 蕭宇涵,蔡興治,陳厚全,戴志融,王懿範,徐永年(2017)。衛政與社政整合之理念、模式與先驅計畫。醫學與健康期刊,6(2),1-16。
    連結:
  5. 衛福部長照專區(2018)。臺灣的失智症長照服務資源量能。2020年 7 月 9 日取自 https://1966.gov.tw/TC/cp-3977-42249-201.html2
  6. Agronin, M. E.(2008).Alzheimer Disease and other dementias: A practical guide.Philadelphia, PA:Wolters Kluwer Health/Lippincott Williams & Wilkins.
  7. Alzheimer’s Australia(2003).Quality Dementia Care.Position Paper,2,1-6.
  8. Arnáiz, E.,Almkvist, O.(2003).Neuropsychological features of mild cognitive impairment and preclinical Alzheimer's disease.Acta Neurologica Scandinavica,107,34-41.
  9. Bramble, M.,Moyle, W.,Shum, D.(2011).A quasi-experimental design trial exploring the effect of a partnership intervention on family and staff well-being in long-term dementia care.Aging & Mental Health,15(8),995-1007.
  10. Braye, S.,Preston-Shoot, M.(2003).Empowering Practice in Social Care.London:Open University Press.
  11. Brooker, D.(2007).Person-Centered Dementia Care: Making Services Better.London:Jessica Kingsley.
  12. Clare, L.(2003).Managing threats to self: Awareness in early stage Alzheimer's disease.Social Science & Medicine,57(6),1017-1029.
  13. Clemerson, G.,Walsh, S.,Isaac, C.(2014).Towards living well with young onset dementia: An exploration of coping from the perspective of those diagnosed.Dementia,13(4),51-466.
  14. Ducharme, F.,Kergoat, M.-J.,Antoine, P.,Pasquier, F.,Coulombe, R.(2013).The unique experience of spouses in early-onset dementia.American Journal of Alzheimer’s Disease and Other Dementias,28(6),634-941.
  15. Ferri, C. P.,Sousa, R.,Albanese, E.,Ribeiro, W. S.,Honyashiki, M.,Prince, M(Ed.),Jackson, J(Ed.)(2009).World Alzheimer Report 2009-Executive Summary.London:Alzheimer’s Disease International.
  16. Harris, P. B.,Keady, J.(2009).Selfhood in younger onset dementia: Transitions and testimonies.Aging & Mental Health,13(3),437-444.
  17. Harris, P. B.,Keady, J.(2004).Living with early onset dementia. Exploring the experience and developing evidence-based guidelines for practice.Alzheimer’s Care Quarterly,5(2),11-122.
  18. Harvey, R.J.,Skelton-Robinson, M.,Rossor, M.N.(2003).The prevalence and causes of dementia in people under the age of 65 years.Journal of Neurology, Neurosurgery & Psychiatry,74(9),1206-1209.
  19. Hunt, D. C.(2011).Young-onset dementia: a review of the literature and what it means for clinicians.Journal of Psychosocial Nursing & Mental Health Services,49(4),28-33.
  20. Johannessen, A.,Engedal, K.,Haugen, P. K.,Dourado, M.,Thorsen, K.(2018)."To be, or not to be": experiencing deterioration among people with young-onset dementia living alone.International journal of qualitative studies on health and well-being,13(1),1490620.
  21. Johnson H. F.(2016).Exploring the lived experience of people with dementia through Interpretative phenomenological analysis.The Qualitative Report,21(4),695.
  22. Kalache, A.,Kickbusch(1997).A global strategy for healthy ageing.World health,4,4-5.
  23. Kilty, C.,Naughton, C.,de Roiste, A.(2019).Constraints and ethical tensions in the area of young-onset dementia.British Journal of Nursing,28(21),1380-1386.
  24. Kuhn D.(2003).Alzheimer’s early stages: First steps in caring and treatment.CA:Hunter House.
  25. Lin, K. N.,Liao, Y. C.,Wang, P. N.,Liu, H. C.(2005).Family members favor disclosing the diagnosis of Alzheimer’s disease.International Psychogeriatrics,17,1-10.
  26. Lincoln, Y. S.,Guba, E. G.(1985).Naturalistic inquiry.Newbury Park, CA:Sage Publications, Inc..
  27. Lyketsos, C. G.,Lopez, O.,Jones, B.,Fitzpatrick, A. L.,Breitner, J.,DeKosky, S.(2002).Prevalence of neuropsychiatric symptoms in dementia and mild cognitive impairment: Results from the cardiovascular health study.JAMA: Journal of the American Medical Association,288,1475-1483.
  28. Millenaar, J.,Hvidsten, L.,de Vugt, ME,Engedal, K.,Selbæk, G.,Wyller, TB,Johannessen, A.,Haugen, P.K.,Bakker, C.,van Vliet, D.,Koopmans, RT.,Verhey, FR,Kersten, H.(2017).Determinants of quality of life in young onset dementia - results from a European multicenter assessment.Aging Ment Health,21(1),24-30.
  29. Mitchell, S. L.,Kiely, D. K.,Hamel, M. B.(2004).Dying with advanced dementia in the nursing home.Archives of Internal Medicine,164(3),321-326.
  30. Miyamoto, Y.,Tachimori, H.,Ito, H.(2010).Formal caregiver burden in dementia: impact of behavioral and psychological symptoms of dementia and activities of daily living.Geriatric Nursing,31(4),246-253.
  31. Papastavrou, E.,Kalokerinou, A.,Papacostas, S. S.,Tsangari, H.,Sourtzi, P.(2007).Caring for a relative with dementia: family caregiver burden.Journal of Clinical Nursing,58(5),446-457.
  32. Ratnavalli, E.,Brayne, C.,Dawson, K.,Hodges, J.R.(2002).The prevalence of frontotemporal dementia.Neurology,58(11),1615-1621.
  33. Reisberg, B.(1988).Functional Assessment Staging (FAST).Psychopharmacology Bulletin,24,653-659.
  34. Rossor, M. N.,Fox, N. C.,Mummery, C. J.,Schott, J. M.,Warren, J. D.(2010).The diagnosis of young-onset dementia.Lancet Neurology,9(8),793-806.
  35. Sampson, E. L.,Warren, J. D.,Rossor, M. N.(2004).Young onset dementia.Postgraduate Medical Journal,80(941),125-139.
  36. Schulz, R.,Martire, L. M.(2004).Family caregiving of persons with dementia: Prevalence, health effects, and support strategies.American Journal of Geriatric Psychiatry,12,240-249.
  37. Shinebourne, P.(2011).The theoretical underpinnings of Interpretative Phenomenological Analysis (IPA).Existential Analysis,22(1),16-31.
  38. Snowden, J. S.,Thompson, J. C.,Stopford, C. L.,Richardson, A. M. T.,Gerhard, A.,Neary, D.(2011).The clinical diagnosis of early-onset dementias: diagnostic accuracy and clinicopathological relationships.Brain,134(9),2478-2492.
  39. Snowden, J.S.,Thompson, J.C.,Stopford, C.L.,Richardson, A. M. T.,Gerhard, A.,Neary, D.,Mann, D.M.(2011).The clinical diagnosis of early-onset dementias: diagnostic accuracy and clinicopathological relationships.Brain,134(9),2478-2492.
  40. Sörensen, S,Pinquart, M,Duberstein, P.(2002).How effective are interventions with caregivers? An updated meta-analysis.Gerontologist,42(3),356-372.
  41. Thomas, A.,Mason, L.,Ford, S.(2003).Care Management in Practice.Oxford:Heinemann.
  42. Todd, S.,Barr, S.,Roberts, M.,Passmore, A. P.(2013).Survival In Dementia and Predictors of Mortality: A Review.International journal of geriatric psychiatry,28(11),1109-1124.
  43. Tractenberg, R. E.,Weiner, M. F.,Thal, L. J.(2002).Estimating the prevalence of agitation in community-dwelling persons with Alzheimer.The Journal of Neuropsychiatry and Clinical Neurosciences,14(1),11-18.
  44. Volicer, L.,Hurley, A. C.,Blasi, Z. V.(2003).Characteristics of dementia end-of-life care across care settings.The American journal of hospice & palliative care,20(3),191-200.
  45. Zerwekh, J. V.(1977).The Practice of Presence.Seminars in Oncology Nursing,13(4),260-262.
  46. 元氣網(2019)。年輕型失智症患者逾萬,專家籲職場友善接納(臺灣失智症協會新聞稿)。2019 年 7 月 20 日取自https://health.udn.com/health/story/10698/3805410
  47. 周雅荃(2016)。成功大學老年學研究所。
  48. 邱銘章(編)(2017).失智診診療手冊.臺灣失智症協會.
  49. 邱銘章,王培寧,孫瑜,傅中玲,陳達夫,林克能,花茂(2013)。衛生福利部科技研究計劃成果報告衛生福利部科技研究計劃成果報告,未出版
  50. 邱麗蓉,謝佳容,蔡欣玲(2007)。失智症病患主要照護者的壓力源、評價和因應行為與健康之相關性探討。精神衛生護理雜誌,2(2),31-44。
  51. 胡月娟(2005)。長期照護機構住民的倫理議題。長期照護雜誌,9(4),325-330。
  52. 張可婷(譯),Boeije, H(2013).質性研究分析方法.新北:韋伯文化.
  53. 張安瑜(2017)。國立臺灣大學社會工作學系。
  54. 梁家欣,程蘊菁,陳人豪(2014)。失智症之重點回顧。內科學誌,25,151-157。
  55. 陳巧宜(2018)。輔仁大學社會工作學系研究所。
  56. 陳向明(2002).社會科學質的研究.臺北:五南圖書.
  57. 陳宜煒(2018)。國立臺北科技大學建築系建築與都市設計碩士班。
  58. 陳昱名(2013)。老年失智症病患家庭照顧者之照顧負荷。崇仁學報,7,1-22。
  59. 陳達夫(2012)。早發性失智症。2019年5月9日取自http://www.fma.org.tw/2012/S-6.html
  60. 陳獻宗,徐亞瑛,黃惠玲,黃秀梨(2008)。國科會專題研究計畫國科會專題研究計畫,國科會。
  61. 傅中玲,陳正生,林克能,李光庭,宋惠娟,柯宏勳(2015).失智症照護.臺北:華都文化出版社.
  62. 勞動部(2020)。強化就業服務及資源連結,協助年輕型失智者業。2020 年 6 月 11 日取自https://www.mol.gov.tw/announcement/2099/46505/
  63. 黃倩儀,馬藹屏,李皓鈞,吳百祿,莊美玲(2015).研究方法.臺北:禾楓書局.
  64. 黃惠玲,劉錦螢,徐亞瑛(2006)。以家庭為基礎之社區失智症照顧模式簡介。長期照護雜誌,10(4),4333-4342。
  65. 楊淵韓,李明濱,劉景寬(2009)。極早期阿茲海默氏失智症之篩檢。臺灣醫界,52(9),8-10。
  66. 詹金烈(2010)。自我認知的進行性退化及無法與時更新可解釋阿茲海默氏病的行為及心理症狀。臺灣老年醫學暨老年學雜誌,5(3),182-189。
  67. 臺灣失智症協會(2013)。衛福部委託辦理衛福部委託辦理,衛福部。
  68. 臺灣失智症協會(2019)。失智人口知多少。2019年8月9日取自http://www.tada2002.org.tw/tada_know_02.html
  69. 臺灣精神醫學會(2014).DSM-5 精神疾病診斷準則手冊.臺北市:合記圖書出版公司.
  70. 潘淑滿(2003).質性研究:理論與應用.臺北:心理出版社.
  71. 蔡淑芬(2016)。國立臺灣大學社會工作學系研究所。
  72. 衛福部(2018)。2025年達成失智友善臺灣 (2018年版) 。2020年2月5日取自file:///C:/Users/User/Downloads/%E6%B0%91%E7%9C%BE%E7%89%88%E5%A4%B1%E6%99%BA%E7%97%87%E9%98%B2%E6%B2%BB%E7%85%A7%E8%AD%B7%E6%94%B%FE7%AD%96%E7%B6%B1%E9%A0%98%E6%9A%A8%E8%A1%8C%E5%8B%95%E6%96%B9%E6%A1%882.0%20(1).pdf
  73. 衛福部(2020)。衛福部(2020)。「長照 2.0 執行現況及檢討」專案報告。立法院第10屆第2會期社會福利及衛生環境委員會第10次全體委員會議。
  74. 衛福部(2018)。107 年長照給付及支付基準及相關推動事宜。2020 年 7 月 9 日取自http://www.tltcna.com.tw/admin/upload/news3_1.pdf
  75. 衛福部(2020)。身心障礙人數。2020年11月13日取自https://dep.mohw.gov.tw/DOS/lp-2976-113.html
  76. 衛福部(2013)。臺灣失智症盛行率調查,委託臺灣失智症協會進行。2020 年 7 月 9 日取自 https://www.mohw.gov.tw/cp-3211-23536-1.html
  77. 鄭秀容,曾月霞(2008)。居家失智老人家屬照顧者照顧需求及需求被滿足情形之研究。榮總護理,25(4),386-392。
  78. 蕭宇涵,廖妙淯,賴仲亮,侯承伯,黃建寧,郭慈安(2019)。失智整合照護之理念,架構與實務。醫院雜誌,52(1),6-12。
  79. 簡春安,鄒平儀(2016).社會工作研究法.高雄:巨流圖書.