This study first revealed the negative caregiving experiences of family caregivers of people with dementia and subsequently examined the triggers and possible processes that resulted in positive caregiving experiences. Our findings revealed that the triggers are divided into 4 aspects:
optimistic characteristics, mutuality, spirituality, and coping abilities and skills. Each aspect contained different elements that facilitated the development of the transformative learning model in terms of positive caregiving experiences (Figure 1).
Figure 1. Transformative Learning Model of Positive Caregiving Experiences. The author used different thickness of dot lines to indicate “Negative experiences” were resulted from “Psychological burden,” “Family tension and chaos,” “Lack of knowledge about dementia,” “Health declines,” and
“Economic issues” factors.
The details of each aspect are listed to reveal how the caregiving experiences of family caregivers changed from negative to positive (Figure 2).
Positive caregiving experiences
Chia-Ming Yen Transformative Learning & Positive Experience Approaches 209 supports from rest of family
Figure 2. Driving Forces that Stimulate the Transformation of Family Caregivers from Negative to Positive Experiences. The author used different thickness of lines to indicate how “Negative experiences” were transformed into “Positive caring experiences” via the following triggers: Optimistic characteristics, Mutuality, Spirituality, and the abilities and skills to cope.
The abilities and skills to cope
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The study participants who reported being optimistic revealed more favourable self-adjustment and active behavior on encountering problems during caregiving. The findings were in concordance with a previous study reporting that individual differences in optimism play an important role in adjusting to stressful life events (Scheier, Carver, & Bridges, 2001). Apart from natural character as self reported as optimistic, the participants reported that their characteristics changed from pessimistic to optimistic and from soft to strong throughout the caregiving process; this may be interpreted as the participants accepting the reality of having a family member with dementia and actively seeking help and resources to make themselves stronger and more capable of managing problems. In this study, optimistic characteristics contributing to positive caregiving experiences should not be considered as single factors; other factors should be examined, particularly those associated with mutuality (e.g., supports from other family members), coping abilities and skills (e.g., understand oneself, knowledge of the disease of dementia), and spirituality or spiritual strength (e.g., worship the God, follow religious concepts).
A study reported that the reciprocal relationship between caregivers and care recipients is a critical source of positive caregiving experiences (Nolan, Grant, & Keady, 1996). Echoing a previous study, the findings revealed that “an improved relationship with the family people with dementia” and “a strengthened relationship between the caregiver and other family members” helped the participants to develop a positive caring experience either with the care recipient or other family members. Unlike patients with other diseases, those with dementia are physically and emotionally dependent on their caregivers and fundamental changes occur in their relationships. Namely, the quality of the caregiver – care recipient relationship often worsens over time (Schulz & Martire, 2004, p. 243). The findings revealed that adult children caregivers who volunteered to fulfill the role of caregiver had particularly strong relationships with care recipients, regardless of gender and even if the relationship was distant previously. However, the results varied for spouse caregivers. In some cases, the relationship tended to be worse than it had been before the diagnosis of dementia. In some other cases, once the caregiver, mainly the wife, accepted the fact of her husband’s disease and problem behaviors, their relationship improved if it was strained previously. If the care recipient, typically the husband with mild- or moderate-stage dementia, showed appreciation for the caregiver’s efforts, caregiver mutuality was considerably increased. Continuous support from the rest of the family (e.g., children and spouse), both emotionally and economically, was a significant contributor to positive relationships between caregivers and other family members. By contrast, a lack of communication with other family members or care being solely provided by primary caregivers tended to worsen caregiver mutuality.
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In accordance with Farran et al. (1991), this study revealed that caregivers relied on their religious and spiritual beliefs to transcend sadness and to determine the meaning and rewards of caregiving. For caregivers who regularly participated in religious practices, religion provided a space to meditate, calm their emotions, or reflect on the caregiving problems they encountered daily. In addition, the participants learned to be more empathetic toward care recipients. This study indicated that deeply embedded notions of karmic rewards, samsara, and the cycle of death and rebirth may help caregivers to recognize the positive aspects of caregiving. The ideas of “paying her debt” and “I owe my mother from my previous life” reflect Buddhist karma and the law of retribution. Similarly, adult children in this study wanted to be role models for their children by returning the gift of care and expressing gratitude to their parents for raising them. This is essentially a behavior based in reciprocity that also serves as a future investment. The practice of worshiping ancestors is common in Taiwanese families. This notion enables caregivers to do the right things and proceed on the right path. In concordance with previous studies, the caregivers of terminally and chronically ill patients relied on spirituality as a crucial resource (Spurlock, 2005, p. 154); spirituality was identified as an important coping mechanism among caregivers of patients with dementia (Kaye & Robinson, 1994).
This study primarily demonstrated how Buddhism, spiritual beliefs, and traditional worship result in positive caregiving experiences. Thus, caregivers became able to negotiate between bliss and suffering and accept suffering as a part of their daily life. They also learned to reintegrate daily stress and spiritual strength, which uplifted them and helped them find solutions to their daily caregiving problems.
In accordance with a previous study (Cheng, Mak, Lau, Ng, & Lam, 2016), the findings regarding coping abilities and skills (e.g., express negative feelings, understand dementia and follow the medical advice, and find appropriate means of dealing with the problematic behaviors of the recipients) revealed that understanding and acknowledging care recipients’ problems helped family caregivers to appreciate the uncontrollability of the recipients’ symptoms and to refrain from imposing unrealistic demands. This study indicated that positive caregivers are more inclined to explore effective solutions on encountering barriers during caregiving processes rather than assuming that the problematic behaviors are intentional.
Caregiving resources were not highly required by the study participants for various reasons.
These included care recipients having mild-stage dementia or refusing to be cared for by someone unfamiliar, or the costs of hiring a professional caregiver being prohibitive. The present findings are in accordance with a previous study on the prevalence of dementia in Taiwan (Taiwan Alzheimer’s Disease Association, 2014), which reported that 71.3% of dementia people were cared for by their
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family members, 19.1% of the families employed a foreign caregiver, and only 3.2% of the families used home-based services. Only 2.2% and 0.2% of the families employed Taiwanese caregivers and daycare centres. Despite the findings showing that only a small number of participants adopted home-based caregiving or foreign caregivers, caregivers benefited both mentally and physically.
Limitations
There are some limitations that could be addressed through future research. Qualitative data explored the experiences and positive changes of primary family caregivers of people with dementia regardless age, social and economic status of caregivers and the characteristics and stages of dementia of care receivers. Further research is better to understand the view points from different age cohorts of caregiver (e.g., young old or oldest old), residential location (e.g., urban or rural areas) and life history of care receivers. In addition, the stages of dementia proceed vary on each individuals. In this study, the participants were interviewed once or twice in a short period of time and the latter changes from both caregivers and care receiver were remained unknown. Future longitudinal research could adopt a six-month or up to two-year length of approaches to address this limitation.
Conclusion
This study revealed various positive changes derived from caregiving in the participants:
1. The participants learned to stay calm and patient and to be less worried.
2. They have learned to be more tolerant and perform self-adjustments.
3. They became more empathetic.
4. They grew closer to the care recipients.
5. They now have increased knowledge and skills for managing dementia.
6. They are aware of the importance of following medical advice.
7. They have become more independent.
8. They are aware of their own health conditions.
9. They have learned that everyone, including people with dementia, can keep learning.
10. They want to be role models for their children.
11. They have learned to not expect love to be reciprocated.
12. They have grown spiritually.
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This study highlighted positive changes in caregiving experiences are caused by various triggers: optimistic characteristics, mutuality, spirituality, and coping abilities and skills. The caregiving experiences of the participants are possibly to be able to change from negative to positive throughout the caregiving process. This study revealed that participants accept the reality of having a family member with dementia and actively seeking help both medical and caregiving resources that make themselves stronger and more capable of managing problems. Adult children caregivers who volunteered to fulfill the role of caregiver had particularly strong relationships with care recipients, and even if the relationship was distant previously. However, for spouse caregivers, in some cases, the mutual relationship tended to be worse than it had been before the diagnosis of dementia. If the care recipient, typically the husband with mild- or moderate-stage dementia, showed appreciation for the caregiver’s efforts, caregiver mutuality was considerably increased. Continuous support from other family members both emotionally and economically contributed to positive relationships between caregivers and other family members. Religion provided a space to meditate, calm their emotions, or reflect on the caregiving problems they encountered daily. The practice of worshiping ancestors, are commonly seen families in Taiwan, enables caregivers to do the right things and proceed on the right path. For adult children in particular, the desire of becoming role models for their children by returning the gift of care and expressing gratitude to their parents for raising them provided the strengths to positive caregiving experiences. Mostly important, equipped with medical knowledge and coping skills contributed to understand and acknowledge care recipients’ problems.
Also it helped family caregivers to appreciate the uncontrollability of the recipients’ symptoms and to refrain from imposing unrealistic demands. Despite caregiving resources were not highly required by the study participants, for those who adopted the resources reported to be benefited from them (e.g., home based service or paid carer).
The population of Taiwan is rapidly aging, therefore, the needs and challenges for caregivers continue to grow. Therefore, this model provides the details of the positive experiences of caregivers and they should be widely propagated. These positive outcomes may also assist many of whom remain pessimistic and seek ways to escape daily circumstances. In the increasing numbers of family caregivers of people with dementia in Taiwan and worldwide, this study provides long-term care policymakers, scholars, healthcare professionals, practitioners and family caregivers of people with dementia with a better understanding of the challenges and needs.
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Acknowledgements
This study was funded by Ministry of Science and Technology (grant number NSC 102 DFA1000004). The author would like to thank the anonymous reviewers. Her deeply thanks and respects to all the participants of family caregivers in this study. Their words had made this study meaningful and valuable. Thank you to the staff of the Division of Neurology from Chang Gang Memorial Hospital in Kaohsiung, the staff of the Association of R.O.C. Dementia Family Caregivers in Taichung and the staff of Kaohsiung Smart Action.
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教育科學研究期刊 第六十三卷第二期 2018年，63（2），187-218
doi:10.6209/JORIES.201806_63(2).0008
失智症家庭照顧者轉化學習模式：
邁向正向經驗
嚴嘉明*
中國醫藥大學附設醫院 老化醫學研究中心
摘要
近年來有愈來愈多的研究顯示，失智症家庭照顧者從照顧歷程中也能獲得正向意義與個 人成長，雖然多數的研究表示照顧者仍飽受體力、心理與財務的困擾。本研究探討失智症家 庭照顧者如何及以什麼樣的模式可由負向轉為正向的照顧經驗。本研究首先探討失智症家庭 照顧者的負向經驗，再進一步探索有助於失智症家庭照顧者由負向轉為正向經驗的重要驅動 力。本研究以深度訪談的方式，共計訪談 18 位失智症家庭照顧者，受訪者分別招募自中部及 南部的兩個照顧者協會與一個醫學中心。訪談過程全程錄音，並繕打成逐字稿。本研究採用 主題分析法，根據深度訪談中與重要驅動力有關的主題與次要主題內容加以分析。本研究發 現，「樂觀的個性」、「互動關係」、「靈性」及「因應能力及技巧」均為失智症家庭照顧者轉化 成正向經驗模式重要的驅動力因素。為數甚多的失智症家庭照顧者經常感受負面經驗，透過
近年來有愈來愈多的研究顯示，失智症家庭照顧者從照顧歷程中也能獲得正向意義與個 人成長，雖然多數的研究表示照顧者仍飽受體力、心理與財務的困擾。本研究探討失智症家 庭照顧者如何及以什麼樣的模式可由負向轉為正向的照顧經驗。本研究首先探討失智症家庭 照顧者的負向經驗，再進一步探索有助於失智症家庭照顧者由負向轉為正向經驗的重要驅動 力。本研究以深度訪談的方式，共計訪談 18 位失智症家庭照顧者，受訪者分別招募自中部及 南部的兩個照顧者協會與一個醫學中心。訪談過程全程錄音，並繕打成逐字稿。本研究採用 主題分析法，根據深度訪談中與重要驅動力有關的主題與次要主題內容加以分析。本研究發 現，「樂觀的個性」、「互動關係」、「靈性」及「因應能力及技巧」均為失智症家庭照顧者轉化 成正向經驗模式重要的驅動力因素。為數甚多的失智症家庭照顧者經常感受負面經驗，透過