Background
Taiwan has become a superaged society, and older individuals face various chronic diseases and age-related health challenges. Dementia, a terminal and progressive condition, often leads to a profound loss of hope and a sense of hopelessness, not only for patients with a diagnosis but also for their family caregivers [
1]. Informal family caregivers, typically the patient’s spouse, family members, friends, or relatives, are responsible for providing daily care to patients with dementia and receive no financial compensation. The caregiving process can extend over months or even years and encompasses a broad spectrum of physical, social, emotional, and financial responsibilities. Therefore, family caregivers of individuals with chronic diseases face notable challenges, including emotional distress, caregiving-related stress, fatigue, deteriorating personal health, and socioeconomic difficulties [
2].
Fatigue is a common and complex phenomenon defined as persistent mental or physical exhaustion, weakness, and tiredness. One study indicated that 88% of family caregivers experience moderate to severe fatigue [
3]. Although the specific causes of fatigue are often unclear, they are strongly influenced by psychological factors such as stress, anxiety, and depression [
4]. A study conducted in Korea, which assessed fatigue in 100 family caregivers, identified caregivers’ anxiety and depression and the progression of the patient’s disease as the primary factors affecting both overall and physical fatigue in caregivers [
5].
Anxiety is typically regarded as a negative emotional state, but it serves an adaptive function, playing a crucial role in the prediction of and preparation for future threats. Compared with the general population, family caregivers are six times more likely to have anxiety and sleep disorders [
6]. A UK study involving 91 family caregivers revealed that 57% of participants had mild symptoms of anxiety, whereas 21% had moderate symptoms [
7].
Research has suggested that hope acts as a protective trait against anxiety and consists of two primary components. Hope is the perceived capacity to produce pathways to desired goals (this is called pathways thinking), along with the motivation to begin and continue the use of those pathways (this is called agency thinking) [
8]. These high-hope individuals may not be as distressed by the possibility of future adverse outcomes as they have the determination and motivation, or agency, to work around possible obstacles to pursue those goals [
9,
10].In Barlow’s anxiety model, emphasis is placed on the anticipation of adverse outcomes, which may also represent future obstacles that hinder goal attainment [
11]. Although both focus on the future, hope and anxiety differ in evaluating outcomes. Anxiety is linked to fear and heightened arousal, often leading to negative views of the future and avoidance behavior.In contrast, the belief in one’s ability (agency) to achieve goals- can counteract the effects of anxious thoughts. Research shows that hope not only reduces anxiety but also plays a key role in anxiety treatment. Studies consistently reveal a strong relationship between hope and anxiety across different research designs [
8,
12].
Hope is a vital form of resilience that influences health and well-being. It can be nurtured through meaningful interactions and shared experiences [
13]. Herth (1993) defined hope as “a dynamic inner strength that enables individuals to transcend their circumstances and pursue meaningful goals,” encompassing interconnectedness with others, a positive mindset, and future orientation [
14]. As a psychological resource, hope fosters motivation, positive coping, and a constructive outlook on life [
15]. Studies highlight a strong link between hope and mental health. For instance, caregivers of patients with schizophrenia experienced enhanced caregiving through hope [
16]. Similarly, interviews with dementia caregivers revealed that reassessing life goals and seeking support promoted personal growth and resilience [
17]. The caregiving experience plays a pivotal role in shaping health outcomes, both positive and negative. When family caregivers feel that their efforts are acknowledged and valued, their sense of hope is reinforced, further enhancing their resilience and overall well-being.
Hope is a vital psychological resource for dementia family caregivers, playing a crucial role in alleviating the mental and physical burdens of caregiving. Its selection as a mediator variable stems from its proven ability to reduce stress, foster resilience, and enhance well-being. For example, Jang et al. found that caregivers of spouses with dementia who maintained hope exhibited greater resilience and coping capacity [
18]. Similarly, a study of 155 Alzheimer’s caregivers demonstrated that hope-agency significantly mediated the effects of stress and caregiving burden, highlighting its role in mitigating adverse caregiving outcomes [
19]. Despite its recognized importance, dementia caregivers often report the lowest levels of hope among caregiving populations. This is particularly concerning given the emotional and physical demands they face, with factors such as anxiety, depression, and the duration of the patient’s illness identified as major contributors to fatigue [
5]. Additional stressors, including insomnia and living with a psychiatric patient, are linked to increased physical, mental, and emotional fatigue [
20]. In this context, hope acts as a protective factor, potentially buffering against the adverse effects of anxiety and fatigue.
While direct evidence of hope mediating the relationship between anxiety and fatigue remains limited, existing research offers compelling support. For instance, Gallagher’s longitudinal study during the COVID-19 pandemic found that initial levels of hope indirectly reduced anxiety over time, underscoring its protective role in mental health. Moreover, perceived emotional control-a related psychological factor-was shown to mediate the relationship between hope and well-being, further supporting the plausibility of hope as a mediating variable [
21]. Building on this foundation, the present study hypothesizes that hope mediates the relationship between anxiety and fatigue in dementia caregivers, with anxiety indirectly predicting fatigue through its impact on hope. This study addresses criticism in literature by investigating the effects of demographic characteristics and anxiety on fatigue and exploring how hope influences this relationship. The findings will contribute to a deeper understanding of hope’s role in enhancing caregiver well-being and offer a basis for developing interventions to strengthen hope as a resilience-building strategy.
Methods
Research design
This study employed a cross-sectional design to investigate the relationships between anxiety, hope, and fatigue in family caregivers of individuals with dementia who lived in the community. Data were collected from July 2023 to May 2024 at the dementia daycare center, community dementia service sites, and dementia care center at Tzu Chi Hospital in Hualien, eastern Taiwan.
Participants
A total of 84 caregivers of individuals with dementia were recruited and completed scales measuring their anxiety, hope, and fatigue. The inclusion criteria were as follows: (1) aged between 20 and 75 years and able to communicate in Mandarin or Taiwanese; (2) currently not hospitalized or receiving treatment for severe physical or mental health problems; and (3) a family member serving as a caregiver for a patient with dementia rather than a hired caregiver.
Data collection and research instruments.
1.
Basic demographic characteristics including their Gender, age, education level, marital status, religious beliefs, relationship with the person with dementia, and daily caregiving hours plus the availability of alternative caregiving support and the Clinical Dementia Rating (CDR) of the person they care for were collected.
2.
Anxiety Scale.
Anxiety levels were assessed via the Generalized Anxiety Disorder-7 (GAD-7). This self-report instrument measures the frequency and severity of anxiety over the preceding 2 weeks on a 4-point Likert scale with endpoints ranging from 0 (not at all) to 3 (every day). The total scores for this scale range from 0 to 21, and 5, 10, and 15 correspond to mild, moderate, and severe anxiety, respectively. The GAD-7 is highly reliable, with an internal consistency of α = 0.92 and a test-retest reliability coefficient of 0.83 [
22].
3.
Hope Scale.
The Herth Hope Scale (HHS), developed by American nursing scholar Kathleen H. Herth in 1991, comprises 12 items that assess three aspects: an individual’s expectations for the future, self-confidence, and attitudes toward life. Each item on the scale is rated on a 4-point scale ranging from 1 (strongly disagree) to 4 (strongly agree). The total score ranges from 12 to 48, with a higher score indicating a stronger sense of hope. The scale’s internal consistency reliability (Cronbach’s alpha) ranges from 0.81 to 0.94. In this study, the Taiwanese version of the HHS, shortened to 10 items, was translated into Chinese and applied. The Cronbach’s α of the scale was 0.82. The total score ranged from 10 to 40, with a higher score indicating greater hope [
23].
4.
Chalder Fatigue Scale.
The Chalder Fatigue Scale, developed by Trudie Chalder and colleagues, assessed fatigue levels. This questionnaire comprises 14 items across two subscales: physical fatigue and mental fatigue. The scale’s internal consistency ranges from 0.88 to 0.90 [
24]. This study employed the Chinese version of the Chalder Fatigue Scale, translated and adapted by Wong and Fielding in 2009, with items 1–4 assessing mental and 5–11 assessing physical fatigue [
25]. Each item is rated on a scale of 0–3, with a total score ranging from 0 to 33 and a higher score indicating more significant fatigue. The test-retest reliability of the modified Chinese version ranges from 0.77 to 0.80.
Ethics
The hospital’s institutional review board approved the study protocol. All family caregivers were thoroughly informed about the study’s objectives and procedures and the time required to complete the questionnaire. They were also informed of their right to withdraw from the study at any time. Before completing the questionnaire, each participant provided written informed consent.
Data analysis
The data were analyzed via SPSS version 20.0. The statistical analysis was divided into two parts. The first part involved using descriptive statistics to assess the distributions of the dependent and independent variables. Frequency distributions and percentages were used to analyze variables such as gender, age, education level, marital status, religious beliefs, cohabitation status, caregiver relationships, availability of additional caregiving support, and the CDR of family members with dementia. The second part involved inferential statistics, including Pearson correlation analysis and the PROCESS model, to explore the relationships between anxiety, hope, and fatigue in family caregivers.
Conclusion
This study investigated the relationships between anxiety, hope, and fatigue in family caregivers of individuals with dementia. These findings suggest that hope plays a mediating role in the relationship between anxiety and fatigue. Specifically, when caregivers are more anxious, they tend to feel more fatigued; however, hope helps buffer this adverse effect, mitigating the impact of anxiety on fatigue. This finding highlights the critical role of hope as a psychological resource that can empower caregivers to better manage the physical and emotional challenges of caregiving, ultimately contributing to a better quality of life. In Eastern culture, filial piety plays a significant role in shaping caregivers’ stress and decision-making processes.
Due to cultural expectations, individuals often assume primary caregiving responsibilities when caring for a parent. This study offers valuable insights into the psychological health challenges faced by dementia family caregivers. These findings have important implications for nursing practices, particularly interventions to foster hope.
This study has several limitations that warrant consideration. First, the sample was drawn primarily from caregivers in a single region, potentially limiting the generalizability of the findings to caregivers in other cultural or geographic contexts. Additionally, the cross-sectional design of this study limited the ability to identify causal relationships between anxiety, hope, and fatigue. Future studies with a longitudinal design would offer a more nuanced understanding of how these psychological factors evolve and interact throughout caregiving, providing insights into the temporal dynamics among anxiety, hope, and fatigue.
Although this study highlights the role of hope in alleviating anxiety and fatigue, it did not empirically evaluate specific interventions to enhance hope. Future research should explore practical strategies for increasing hope in caregivers and assess their ability to reduce anxiety and fatigue.
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