题名

輕度失智症患者之生活品質探討:家庭照顧者觀點

并列篇名

Quality of life in early stage dementia: Perspectives of family caregivers

DOI

10.6317/LTC.202306_26(1).0004

作者

呂以榮(Yii-Rong Leu);曾秀雲(Hsiu-Yun Tseng);蔡佩樺(Pei-Hua Tsai)

关键词

失智 ; 生活品質 ; 代理評估 ; 失智照顧 ; 家庭韌性 ; dementia ; quality of life ; proxy assessment ; dementia care ; family resilience

期刊名称

長期照護雜誌

卷期/出版年月

26卷1期(2023 / 06 / 01)

页次

37 - 57

内容语文

繁體中文;英文

中文摘要

我國失智人口數量迅速攀升。鑑於失智症病程與病徵特色,失智者多由家屬居家照顧,或接受社區式照顧服務。本研究採立意取樣邀請8位輕度失智症患者的家庭照顧者進行半結構深度訪談,從家庭照顧者觀點探討輕度失智症患者生活品質之維持經驗。研究結果發現:失智症出現認知功能障礙及精神行為症狀、逐漸喪失生活自理能力、社交退縮與共病等,不僅影響失智症患者的生活品質,連帶改變患者的行為表現及社會參與,甚至影響家庭互動。此外,家庭照顧者考量失智症患者的最大利益,維持失智症患者生活品質要件包含:1.在生理照顧層面:維持或恢復日常生活功能、維持規律生活、運動、配合醫師用藥;2.在心理照顧層面:維護自尊、正向情感表達、克制與調節個人的負向情緒;3.在社會支持層面:親友與社群網絡支持、善用社區服務資源;4.在居住安排及環境層面:居住安排同住與否的照顧管理,以及居住環境改造。最後,研究者按結論提出維持失智症患者生活品質之實務相關建議。

英文摘要

The population of persons with dementia is rapidly increasing in Taiwan. Given the characteristics of dementia's progression and symptoms, most patients are cared for at home, with or without utilizing community-based dementia care services. This study, conducted with semi-structured in-depth interviews with 8 family caregivers, aimed to explore the experience of maintaining quality of life (QOL) in early stage dementia from the perspectives of family caregivers. The results revealed factors that affect dementia-specific QOL, including the appearance of cognitive dysfunction, behavioral and psychological symptoms of dementia (BPSD), gradual loss of self-care abilities, social withdrawal and co-morbidity. These factors also changed patients' behavioral performance and social participation; even family interactions were affected. Furthermore, four important domains acting in the best interests of dementia patients were identified to maintain QOL: (1) in the domain of physical care: to restore or maintain the ability to perform activities of daily living, lead a regular life, exercise, and access medical care services and medication; (2) in the domain of psychological care: to maintain self-esteem, positive emotional expression, restraint and regulate negative emotions; (3) in the domain of social support: to access support from relatives and friends, get assistance from broader social networks, and utilize community-based service resources; and (4) in the domain of living arrangement and environmental modification. Suggestions for practical work were made.

主题分类 醫藥衛生 > 預防保健與衛生學
醫藥衛生 > 社會醫學
参考文献
  1. 郭紡瑄,穆佩芬,王培寧(2021)。家庭韌性、家庭界限模糊與失智病人其主要照顧者之希望感的相關性探討。榮總護理,38(2),175-183。
    連結:
  2. ADI=Alzheimer’s Disease International(2021).,未出版
  3. Anantapong, K.,Barrado-Martín, Y.,Nair, P.,Rait, G.,Smith, C. H.,Moore, K. J.,Davies, N.(2021).How do people living with dementia perceive eating and drinking difficulties? A qualitative study.Age and Ageing,50(5),1820-1828.
  4. Balintona, M. L.(2018).University of Pennsylvania.
  5. Barcaccia, B.,Esposito, G.,Matarese, M.,Bertolaso, M.,Elvira, M.,De Marinis, M. G.(2013).Defining quality of life: a wild-goose chase?.Europe Journal of Psychology,9(1),185-203.
  6. Clare, L.(2003).Managing threats to self: awareness in early stage Alzheimer's disease.Social Science & Medicine,57(6),1017-1029.
  7. Deist, M.,Greeff, A. P.(2015).Resilience in families caring for a family member diagnosed with dementia.Educational Gerontology,41(2),93-105.
  8. Griffiths, A. W.,Smith, S. J.,Martin, A.,Meads, D.,Kelley, R.,Surr, C. A.(2020).Exploring self-report and proxy-report quality-of-life measures for people living with dementia in care homes.Quality of Life Research,29(2),463-472.
  9. Hongisto, K.,Väätäinen, S.,Martikainen, J.,Hallikainen, I.,Välimäki, T.,Suhonen, J.,Koivisto, A.M.(2015).Self-rated and caregiver-rated quality of life in Alzheimer disease with a focus on evolving patient ability to respond to questionnaires: 5-year prospective ALSOVA Cohort Study.the American Journal of Geriatric Psychiatry,23(2),1280-1289.
  10. Kim, G. M.,Lim, H. S.,Lim, J. Y.,Kim, S. S.,Kim E. J(2019).Effects of a family resilience enhancement program (FREP) on family adaptation to elderly with dementia in South Korea.International Journal of Gerontology,13(1),54-58.
  11. Kim, G. M.,Lim, J. Y.,Kim, E. J.,Kim, S. S.(2018).A model of adaptation for families of elderly patients with dementia: focusing on family resilience.Aging & Mental Health,22(10),1295-1303.
  12. Lacerda, I. B.,Sousa, M. F. B.,Santos, R. L.,Nogueira, M. M.,Dourado, M. C.(2016).Concepts and objects of awareness in Alzheimer’s disease: an updated systematic review.Journal Brasileiro de Psiquiatria,65(1),99-109.
  13. Landeiro, F.,Mughal, S.,Walsh, K.,Nye, E.,Morton, J.,Williams, H.,Ghinai, I.,Castro, Y.,Leal, J.,Roberts, N.,Wace, H.,Handels, R.,Lecomte, P.,Gustavsson, A.,Roncancio-Diaz, E.,Belger, M.,Jhuti, G. S.,Bouvy, J. C.,Potashman, M. H.,Tockhorn-Heidenreich, A.(2020).Health-related quality of life in people with predementia Alzheimer’s disease, mild cognitive impairment or dementia measured with preference-based instruments: a systematic literature review.Alzheimer’s Research & Therapy,12(1)
  14. Lawton, M. P.(1994).Quality of life in Alzheimer disease.Alzheimer Disease & Associated Disorders,8,138-150.
  15. Lawton, M. P.(1997).Assessing quality of life in Alzheimer disease research.Alzheimer Disease & Associated Disorders,11(6),91-99.
  16. Logsdon, R. G.,Gibbons, L. E.,McCurry, S. M.,Teri, L.(2002).Assessing quality of life in older adults with cognitive impairment.Psychosomatic Medicine,64(3),510-519.
  17. Luthar, S.,Cicchetti, D.,Becker, B.(2000).The construct of resilience: A critical evaluation and guidelines for future work.Child Development,71(3),543-562.
  18. Malhotra, C.,Hazirah, M.,Tan, L. L.,Malhotra, R.,Yap, P.,Balasundaram, B.,PISCES Study Group(2021).Family caregiver perspectives on suffering of persons with severe dementia: a qualitative study.Journal of Pain and Symptom Management,62(1),20-27.
  19. McCubbin, H. I.,Thompson, A. I.,McCubbin, M. A.(1996).Resiliency in families: A conceptual model of family adjustment and adaptation in response to stress and crisis.Family assessment:Resiliency, coping, and adaptation Inventories for research and practice
  20. Métais, C.,Burel, N.,Gillham, J. E.,Tarquinio, C.,Martin-Krumm, C.(2022).Integrative review of the recent literature on human resilience: From concepts, theories, and discussions towards a complex understanding.Europe’s Journal of Psychology,18(1),98-119.
  21. Nogueira, M. M. L.,Neto, J. P. S.,Dourado, M. C. N.(2021).Quality of life of people with Alzheimer disease: Comparison between dyads degree of kinship.Journal of Geriatric Psychiatry and Neurology,34(2),119-127.
  22. Rees, J.,Tuijt, R.,Burton, A.,Walters, K.,Cooper, C.(2021).Supporting self-care of long-term conditions in people with dementia: A systematic review.International Journal of Nursing Studies,116,103432.
  23. Samsi, K.,Manthorpe, J.(2013).Everyday decision-making in dementia: findings from a longitudinal interview study of people with dementia and family carers.International Psychogeriatrics,25(6),949-961.
  24. Sousa, M. F.,Santos, R. L.,Simões, P.,Conde-Sala, J. L.,Dourado, M. C.(2018).Discrepancies between Alzheimer’s disease patients’ and caregivers’ ratings about patients’ quality of life.Alzheimer Disease & Associated Disorders,32(3),240-246.
  25. Walsh, F.(2003).Family resilience: A framework for clinical practice.Family Process,42,1-18.
  26. WHOQOL Group(1998).The World Health Organization Quality of Life Assessment (WHOQOL): Development and general psychometric properties.Social Science & Medicine,46(12),1569-1585.
  27. 胡文郁,戴玉慈,陳慶餘,陳月枝(2003)。生活品質之概念分析─於探討癌末病人健康相關生活品質之應用。安寧療護雜誌,8(1),45-60。
  28. 楊淯惇(2018)。國立臺灣大學心理學研究所。
  29. 臺灣失智症協會(2021,9 月 23 日)。2021全球失智症報告出爐。失智症社會支持中心。取自 http://tada2002.ehosting.com.tw/Support.ada2002.org.tw/NewsDtl.aspx?pk=467