比較年輕型與老年型失智症個案之 家庭照顧需求、主要照顧者負荷及情緒困擾

Abstract

背景 年輕型失智症是指65歲以前發病的失智症個案，其症狀較老年型失智症多樣（如：行為異常等），且較不易診斷，當個案確診時，其可能面臨必須提早退休、財務影響等問題，對於家庭將造成巨大影響，而主要照顧者也將產生沉重負荷，於臨床深感年輕型失智症個案之主要照顧者，必須承受沉重的照顧壓力，且與老年型失智症個案相比，其可以獲得的資源甚少，國內鮮少有針對年輕型失智症個案及主要照顧者之相關研究，因此引發筆者探討的動機。 目的 比較年輕型與老年型失智症個案之家庭照顧需求、主要照顧者負荷及情緒困擾。 方法 採橫斷調查性研究設計，使用立意及滾雪球取樣方式，以結構式問卷進行調查，收案地點為（1）臺北市及桃園市某醫學中心之神經科門診及失智症共同照顧中心；（2）臺灣失智協會網站刊登招募資訊；（3）臺灣失智協會成立之「YOUNG記憶會館」及「瑞智互助家庭」張貼招募海報；符合收案條件者經說明且同意參與研究後，依個案發病時年齡予以分為兩組，年輕型失智症（65歲前發病）及老年型失智症（65歲後發病），進行一次性問卷資料收集；採自填式問卷，評量工具包含「家屬及個案基本資料表」、「Zarit 負荷訪談量表（Zarit Burden Interview, ZBI）」、「失智症家庭照護需求評估表」、「簡式健康量表（Brief Symptom Rating Scale, BSRS-5）」；統計方式以SPSS/PC+21.0版套裝軟體進行資料分析，包括描述性及 推論性統計。 結果 本研究共105位失智症主要照顧者參與（年輕型35位、老年型70位），結果顯示：（1）年輕型個案以「阿茲海默型及額顳葉型」為主，老年型個案以「阿茲海默型」佔多數；主要照顧者與個案關係中，年輕型以「配偶」，老年型則為「兒女」為主，性別皆為「女性」較多，照顧者症狀皆以「疲倦感」最高。（2）照顧背景方面，與個案「生病後」關係中，年輕型以「不好」為主，老年型則為「好」為主，年輕型及老年型「未使用」任一長照資源皆達五成以上，年輕型以「覺得不需要、對個案不適用」為主，而老年型以「覺得不需要」為主。（3）家庭照顧需求中「語言與溝通、日常生活功能、行為精神症狀、照顧者壓力、資源及協助」之得分及「家庭照顧需求總分」，年輕型皆顯著高於老年型。（4）在家庭照顧需求之「資源及協助」中，年輕型照顧者其「安排活動、處理個案行為精神症狀、與個案溝通互動、情緒支持、失智症資訊、社會資源」之需求皆達五成以上，其中「失智症資訊」達88.6%，而老年型達五成以上的項目包含「安排活動、失智症資訊、社會資源」。（5）照顧者負荷方面，年輕型個案之照顧者負荷顯著高於老年型，在照顧者負荷量表總分≧48分（切截點）之比例，年輕型個案之照顧者（60.0%）顯著高於老年型（11.4%）；情緒困擾方面，簡式健康量表總分年輕型顯著高於老年型，在情緒困擾（簡式健康量表）>15分（切截點）之比例，兩組比例無顯著差異。（6）年輕型及老年型家庭照顧需求個別差異中，年輕型家庭照顧需求之個案「行為精神症狀」與照顧者負荷及情緒困擾皆達顯著正相關，而老年型家庭照顧需求之個案「語言與溝通、日常生活功能」與照顧者負荷及情緒困擾皆達顯著正相關。（7）以年輕型來說，會產生高照顧者負荷之變項包括：配偶、照顧者之自評健康狀態「不好」者、與個案生病後關係「不好」者；會產生高情緒困擾之變項為：照顧者自評之健康狀態「不好」者；就老年型來說，會產生高照顧者負荷之變項包括：女性、照顧者自評之健康狀態「不好」者；會產生高情緒困擾之變項為：照顧者自評之健康狀態「不好」者。（8）不論年輕型或老年型，對於照顧者負荷及情緒困擾，「照顧者壓力」為最重要的顯著預測變項；而「失智症發病時間」，亦為預測照顧者負荷之顯著預測變項；在老年型中，個案之「睡眠」需求、「主要照顧者症狀總數」為另外兩項照顧者負荷顯著預測變項，而個案之「營養及飲食」需求為老年型情緒困擾之顯著預測變項。 結論及應用 年輕型與老年型失智症個案之家庭照顧需求與主要照顧者負荷及情緒困擾存在顯著差異，年輕型失智症個案之家庭照顧需求、照顧者負荷及情緒困擾，皆顯著高於老年型失智症個案。 現醫療機構多有附設長照服務或失智症共同照顧中心，照護人員應該擔任失智症個案及照顧者之「代言者」，讓團隊成員瞭解個案及照顧者之需求，進而規劃更適切的服務內容，並建議能夠設立支持性團體。隨著失智症個案病程進展，建議個案管理師（或社工師）對於失智症主要照顧者，應該保有高度敏感性，能夠主動關懷並提供必要資訊及協助（如媒合長照資源），針對照顧者可以善用簡要評估工具（如簡式健康量表），識別照顧者之情緒變化，運用跨團隊照護及給予適當轉介。 建議長照服務能夠納入50歲以下失智症個案及照顧者，此外，針對年輕型及老年型家庭照顧需求之差異，給予規劃個別性服務及教導照顧者常見的照護技巧，而政府或相關單位針對失智症的宣導，應納入年輕型失智症之介紹，增進大眾對於年輕型失智的認識。

Background Early-onset dementia refers to cases of dementia that occur before the age of 65 and is presented with more diverse symptoms than late-onset dementia, specifically in terms of behavioral abnormalities, making it difficult to diagnose. Once diagnosed with early-onset dementia, the person will face issues like early retirement and its financial impact, which puts more burden on the family, mostly on the primary caregiver. Clinically, a case of early-onset dementia poses more pressure to the caregiver when compared with late-onset dementia, as they have fewer and limited resources at their disposal. In fact, there are only a few domestic studies on early-onset dementia. Objective To compare the family care needs, burden on primary caregiver, and emotional distress between early-onset and late-onset dementia patients. Method This study adopted a cross-sectional survey design with structured questionnaires for subjects recruited (1) by the integrated dementia care center and the neurology outpatient clinics of medical centers in Taipei and Taoyuan City, (2) through recruitment information on the official website of Taiwan Alzheimer’s Disease Association, and (3) through posters at the House of Memories and the Family of Wisdom. Subjects were recruited with informed consent by purposive and snowball sampling via news updates. Those of eligible criteria for inclusion were divided into two groups based on their age at the time of onset, namely the early-onset (before age of 65) and the late-onset (after age of 65), where they would completed a self- administered questionnaire for collected data. The assessment tools included the the “Primary Caregiver and Patient Characteristics”, the “Zarit Burden Interview”, the “Assessment tool for Family Care Needs of Dementia”, and the “Brief Symptom Rating Scale”, all to be analyzed with SPSS/PC+ Version 21.0 software, involving descriptive and inferential statistics. Results A total of 105 primary caregivers of dementia patients (35 for early-onset and 70 for late-onset) participated in this study. The results showed that: (1) "Alzheimer's and frontotemporal types" predominated in the early-onset cases, and "Alzheimer's type" in the late-onset cases. "Spouse" was typically the primary caregiver in the early-onset cases, while "children" were the primary caregiver in the late-onset cases. However, most primary caregivers were “female” and “fatigue” was the leading complaint for caring after patient; (2) For caregivers, in terms of their relationship with the patient “after disease onset”, such bond turned “bad” in early-onset cases but was “good” for late-onset cases. In both groups, more than 50% of the subjects preferred not to use any of the long-term care services, as the early- onset group deemed it as “unnecessary” or “not applicable” to them, while the late-onset group simply did not think it was needed; (3) The scores of "language and communication", "activities of daily living", "behavioral and psychological symptoms","care stress", and "obtaining resources", and the “total score of care needs” in the early-onset group were significantly higher than in the late-onset group; (4) In terms of "obtaining resources" for care needs, more than half of the subjects in the early-onset group required assistance in planning activities, dealing with their behavioral and psychological symptoms, communicating and interacting with them, catering to their emotions, and providing information and social resources on dementia, among which 88.6% of the needs were “request of information about dementia”. More than 50% of the needs for the late-onset group focused on “planning activities”, and “providing information and social resources on dementia; (5) Regarding burdens, the caregivers in the early-onset group experienced more distress than in the late-onset group. In the portion of caregivers who scored a total of ≥ 48 points (a cut-off point), there were 60% of caregivers from the early-onset group and 11.4% from the late-onset group. Emotionally, the early-onset group scored higher total score on the Brief Symptom Rating Scale, even though there was no significant difference between the two groups in the portion of subjects scoring >15 points (a cut-off point); (6) Among the differences in the care needs for families of early-onset and late-onset dementia, there was a significantly positive correlation between dealing with patient’s "behavioral and psychological symptoms" and caregiver's burden and emotional distress in the cases of early-onset dementia. In contrast, there was a significantly positive correlation between the needs of "language and communication" and "activities of daily living" and caregiver's burden and emotional distress in the cases of late-onset dementia; (7) For the early-onset group, the significant predicting variables that would lead to high caregiver burden included: spouse, caregiver who self-evaluates their health status as “poor”, and those who have a “poor” relationship with the patient after onset. The significant predicting variable, which would lead to high emotional distress, included: caregiver who self-evaluates their health status as poor. And for the late-onset group, the significant predicting variables that would lead to high burden to the caregiver included: women and caregiver who self-evaluates their health status as “poor”. The significant predicting variable, which would lead to high emotional distress, included: caregiver who self-evaluates their health status as poor; and (8) In both onset groups, care stress was the most important significant predictor of their burden and emotional distress. The “time of onset” mostly determined the caregiver’s burden in long run. For the late-onset group, the patient’s “sleep” needs and “caregiver’s number of health-related symptoms” were the other two significant predictors of caregiver burden, while the patient’s “nutrition and diet” needs played a significant role in causing emotional distress for caregivers of the group. Conclusion and Implications There were significant differences in family care needs and primary caregiver burden and emotional distress between early-onset and late-onset dementia cases, with the early-onset group showing higher caregiving needs, caregiver burden and emotional distress than the late-onset group. Many institutions now provide long-term care service or integrated care center for dementia. Health care providers should act as "advocates" for these patients and their caregiver, allowing team members to understand the needs of patients and caregivers in order to arrange more appropriate services. It is also recommended to establish supportive groups for the caregiver. It is imperative that case managers (or social workers) should remain vigilant toward these primary caregivers during the progression course of dementia cases and be proactive in caring for and providing necessary information and assistance, as well as using brief assessment tools to identify emotional changes in caregivers, so as to adopt a interdisciplinary care system and provide appropriate referrals, if necessary. It is recommended that long-term care services should include dementia patients under the age of 50, where care service can be customized to fit individuals and common caregiving skills are taught to caregivers. The government or relevant authorities should promote the understanding of early-onset dementia for the public to become aware of such condition.