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  • 學位論文

誰來照顧失智症者?探討失智症家庭照顧者的服務資源使用

Who Cares People with Dementia? A Study on the Service Use of Dementia Family Caregivers

指導教授 : 林萬億
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摘要


失智症是晚近以來受到世界各國關注的公共政策議題。失智症是腦部認知功能漸進式退化的疾病,其盛行率與年齡高度相關,在人口快速老化的趨勢下,對家庭社會的潛在影響不容忽視。至今,失智症在疾病的治療上尚無突破性進展,然此同時,家庭照顧者在長期的照顧負荷中陷入困境。在新自由主義福利思潮下,政府透過社區照顧的理念強化家庭的照顧責任,家庭主義和失智症污名化則進一步將失智症者留在家中照顧。失智症的照顧困難重重,這些因素使得失智症家庭照顧者面臨內外交迫的照顧處境,亟需政府提供服務資源予以協助。   本研究採質性研究取向,透過半結構深度訪談方式收集研究資料,以7位失智症家庭照顧者為主角,並以5位失智症專業服務人員的服務經驗為輔,探討失智症家庭照顧者對服務使用的經驗與評價,及其對政府服務資源的期待與建議。本研究所指服務資源為居家服務、日間照顧、長照機構、喘息服務、團體家屋、瑞智互助家庭、瑞智學堂、家庭照顧者支持服務等8項正式服務。   研究發現,失智症家庭照顧者在服務資源的使用上,主要依受照顧者的失智程度、精神行為問題,及照顧者本身就業狀態、社經背景、對服務使用的認知,而呈現多樣性。照顧者進入服務體系的管道不一,進入後則漸次擴展對資源的認識和使用。現行服務體系的問題為:連續整合性不足、易接近性不足、責信不足、服務使用者參與不足、對多元差異的關注不足,以及照顧管理功能的缺失。   失智症家庭照顧者的服務資源使用受到失智症服務體系的供給與社會文化脈絡下價值體系的影響,三者之間呈現多元動態的互動關係。其中,照顧者有迫切服務需求,惟資源供給不符實際所需;照顧者面臨了傳統家庭倫理與失智症「雙重污名」的擠壓,顯現社會文化脈絡對服務使用的潛在影響不可忽視,另外,在家庭主義及社區照顧理念的政策規劃架構下,失智症服務體系的發展易受到抑制。   有關研究建議,首先,在政策理念層面為:將失智症照顧納入社會權、政府與家庭共同分攤照顧責任、釐清失智症照顧業務的定位與分工。其次,在實務執行面為:正視失智症照顧的特殊需求、落實照顧管理功能、強化失智症照顧的安全網、加強專業倡導及使用者參與、建立肯定照顧價值的文化。

並列摘要


Dementia has become a policy issue worldwide in recent decades. Dementia is a syndrome cause by the cognitive impairment of the brain, of a progressive nature. Its prevalence is highly age-associated, and therefore shows a significant impact on the fast ageing society. By far, no treatments are available, while the need for care has troubled the family caregivers for a long time. Under the Neoliberalism and community care ideology , the government reinforced the responsibility of caring towards family; moreover, with the traditional value of familism along with the stigmatization of dementia, the care needs of people with dementia are left to family caregivers. Due to the notorious difficulties in dementia care, caregivers are facing tremendous care burdens and are in urgent need of support from the government. This study is based on qualitative research method with semi-structured depth-interview as a means of data collecting. It includes 7 dementia family caregivers and 5 senior professionals , with an aim to explore the caregivers’ experience about the using of services provided by the government, and their viewpoints on how the government should do to provide better support them. Services investigated in this study includes 8 services from the government: home care, day care, long-term care institution, respite care, group home, Family of Wisdom, School of Wisdom, supporting service for family caregivers. The result shows that the service use of dementia family caregivers varies. It depends on the phases of the disease and the severity of Behavioral and Psychological Symptoms of Dementia (BPSD) of the people with dementia, and the family caregiver’s employment status, social economic background, perceptions on service use. As to the access of the service system, caregivers enter the system from various entries and therefore facilitate the use of service. The existing problems of the service system are: discontinuity and fragmentation, inaccessibility, unaccountability, lack of user participation, insufficient concerns about diversity, and the malfunction of care management. This study indicates that the service use of the dementia family caregivers is associated with the service provision of dementia care and the ethical values derived from social and cultural context. The triadic interactions show: (1)the government provides inadequate support for the desperate need of family caregivers; (2)caregivers are confronted with “double stigmatization” of tradition family value and dementia; (3)the service system are facing problems in expanding its capacity under the ideology of familism and community care. Based on the findings, this study brings up some suggestions. Firstly, in the policy field, dementia care should be recognized as social right; the government as well as the family is responsible for the care of people with dementia; division of labor among government departments in dementia care should be reorganized. Secondly, in the practical field, it’s important to put more emphasize on the unique need of dementia care, to reinforce the implementation of care management, to build a dementia care network, to advocate the rights of people with dementia and their caregivers and promote user participation, and to recognize the value of caring.

並列關鍵字

Dementia Family caregiver Service use Elderly Long-term care

參考文獻


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被引用紀錄


王品(2022)。老年照護與空間治理的雙重典範轉移:德國「失智症團體家屋」的啟示都市與計劃49(3),341-360。https://doi.org/10.6128%2fCP.202209_49(3).0004

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