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This chapter explores how caregivers, as non-professional caregivers – often family members – play a critical role in daily disease management, and their understanding of prevention strategies directly impacts patient outcomes. The chapter presents findings from a recent study assessing caregiver awareness, attitudes, and educational needs. It also highlights gaps in caregiver training and proposes community-based educational interventions tailored to cultural and socioeconomic contexts. By framing the topic within the broader context of long-term care for chronic illnesses, this chapter underscores the importance of caregiver empowerment through inclusive policy practices and targeted research, which are essential to reducing healthcare burdens and improving the quality of life for patients and families.
Department of Nursing, College of Nursing and Health Sciences, Jazan University, Jazan, Saudi Arabia
*Address all correspondence to: fatimaabdalla008@gmail.com
1. Introduction
1.1 The concept of caregivers
Kleinman states that care is the human glue that binds communities, societies, and families together [1]. Caregivers are operationally defined as those responsible for the ongoing physical care and emotional support of individuals who are unable to care for themselves [2]. Care can be organized in either a formal or informal manner [3]. In an informal setting, care is provided by a person’s friends or family. Volunteers and family members play a vital role in the process of caring for individuals with disabilities or chronic illnesses [4].
1.2 The demand for caregivers
Due to the aging population in Europe, the demand for informal care is expected to rise [5]. According to a study conducted by Verbakel et al. (2017), the estimated number of informal caregivers in Europe could range from 10% to 25% of the overall population [6].
1.3 The role of caregivers
The role of caregiving varies depending on the situation, cause, and type of disability. The trajectory begins with the caregiver recognizing that something is wrong with the care recipient. This often involves taking the individual to medical appointments and communicating with their healthcare provider. The trajectory continues to intensify as the need for care increases. This includes hiring care providers, monitoring the patient’s medications, managing their symptoms, and providing emotional support. Caregivers then need to complete self-care tasks such as dressing, managing insurance, addressing symptoms, and assisting with chores. Depending on the situation, end-of-life care can involve placing the patient in a nursing home or a hospice program. The trajectory indicates that the tasks for the caregiver are cumulative. As the need for care increases, the role of caregiving becomes stressful, more complex, and time-consuming [7].
There are multiple activities and tasks associated with caregiving. Caregivers engage in interpersonal and cognitive processes that involve problem-solving, monitoring the well-being of their loved ones, and communicating with others. This includes maintaining their social connections and advocating for their loved ones’ health and medical care. The tasks that a caregiver completes depend on their skills, health status, values, and preferences, as well as other factors such as the availability of resources and the quality of their relationship with the recipient [8].
Although family involvement in medical and nursing tasks has existed for a long time, it has become more complex and prevalent. As a result, more elderly individuals are now being cared for at home instead of in nursing homes or hospitals [9].
This often involves interacting with complex medical devices. The shift in the role of the caregiver is attributed to the reduction in hospital admissions and the increasing complexity of treatment options for acute and chronic conditions in non-institutional settings [7].
2. Family caregiver support for patient self-management during chronic, life-limiting illness
The daily activities of patients with illnesses are referred to as self-management. It involves managing their symptoms, treatments, lifestyle modifications, and the spiritual, cultural, and psychosocial effects of their illness [10].
The novel themes revolved around the family caregiver’s role in supporting their loved ones with chronic and life-limiting illnesses. They included focusing on the patient’s needs, activating resources to help the family caregiver, and supporting the patient living with a chronic and life-limiting illness. The various factors that influence the support family caregivers provide for their loved ones with chronic and severe illnesses were identified. These factors included the patient’s health status, personal and environmental characteristics, and available resources. The role of the family caregiver in supporting patient self-management is complex and involves multiple processes [11].
When a family member is involved in the management of a sick loved one’s illness, the term “self and family-management” is often used to refer to the individual’s daily activities. This indicates that patients are managing their conditions with the help of their caregivers [12].
Substantial evidence indicates that there are effective interventions that assist family members in providing the necessary support and care for their sick loved ones. However, these evidence-based studies did not focus on the specific needs and challenges of family caregivers of people with chronic and life-limiting illnesses [11].
The effects of caregiving can be both highly individualized and wide-ranged. Caregivers are at a higher risk of experiencing negative impacts in various aspects of their lives, such as their health, economic security, and quality of life [7].
Strong evidence shows that family members who look after older adults are at risk, as they are more prone to experiencing emotional distress, depression, and anxiety than non-caregivers. Furthermore, caregivers reportedly have lower self-ratings, elevated cortisol levels, and are more prone to experiencing chronic diseases. The various factors that affect the quality of life for caregivers can also contribute to their negative outcomes. These include the intensity of their caregiving, the lack of choice in their role, and the perception of the suffering of the recipient. The physical and social functioning of the caregiver, as well as the support they receive, are also factors that can contribute to these negative effects. Caregivers who shift from a low-intensity role to a high-intensity one experience more adverse effects [8].
In addition, they may benefit from providing care. Being able to provide care to a loved one can help instill confidence in the caregiver, make them feel closer to the recipient, and ensure that the recipient is receiving the best possible care. However, the exact effects of this type of support can vary depending on the individual’s contextual and personal characteristics [7].
The body of evidence on the negative effects of providing care is far greater than that on the positive effects. This is because researchers have been conducting studies to identify individuals who are at risk of experiencing these effects and to assess the public health consequences of this type of support [8]. Documenting these effects is a vital first step in developing effective interventions and policies to help caregivers [7].
The psychological and mental states of caregivers are affected by the loss of their autonomy and the demands of their patients. The quality of life of caregivers is significantly affected [13–15]. Besides the quality of life, the psychological well-being of caregivers is also impacted by the stress levels they experience. Some of the factors that can influence this are the ways in which they cope with the burden of caring for their patients [16–18].
Caregivers experience emotional stress differently from psychological distress due to their duties. The stress process is affected by various factors, including the types of stressors they encounter, their subjective appraisal of these stressors, and their resources, which can act as protective factors [19–21].
The caregivers tend to have higher levels of anxiety and depressive symptoms. These conditions affect their ability to perform their daily tasks and make it hard to maintain their motivation. Depression is a type of psychological disorder that affects people’s behavior and emotions. It can be triggered by negative self-evaluation [13, 14, 22].
The burden of caregiving is defined by Zarit et al. as the damage caused by providing care for a loved one, which can affect physical and emotional health, economic conditions, and social life. There are two components to this concept: subjective overload and the emotional response to caregiving. According to Zarit and colleagues, subjective overload is a psychological feeling associated with caregiving. On the contrary, the objective burden refers to the type of burden the primary caregiver bears to provide the best possible care for their loved one. It is linked to the various tasks and challenges the caregiver must face regularly [23].
Women are more likely to provide care for dependent people than men [24]. This has been known to result in a decline in physical and mental health and a higher burden of care for women. In addition, being a male caregiver and receiving external help are associated with a lower caregiving burden [25–27]. This has been positively linked to caregiver satisfaction and alleviation of the caregiving burden [28].
Many informal caregivers face challenges in managing their own lives and coping with emotions [29]. Being a caregiver has a significant impact on the well-being of those who provide care. Substantial evidence reveals that this situation negatively affects the financial well-being of caregivers. They often must leave their jobs to care for these individuals due to the high demands placed on them, making it difficult to reconcile their work and family lives [21, 23, 30–35]. This can lead to financial problems stemming from the costs of providing care for a disabled individual. One study showed that when financial barriers were reduced, caregivers were more likely to experience improved well-being [21]. Many caregivers feel that their role as a family member has shifted to that of a caregiver due to the stress and other factors they encounter while providing care [36].
9. Assessing and addressing family caregivers’ needs and risks
The identification of the needs and risks of caregivers is a complex issue. To effectively integrate the use of standardized assessment tools into the practice of healthcare, a variety of factors must be considered. Current practices lack consistency when it comes to identifying the needs and risks of caregivers. This issue is often addressed by various indirect and direct approaches. According to participants, the use of a standardized assessment could help improve the quality of care for patients and enhance communication between clinicians and caregivers. Various barriers prevent the use of a standardized caregiver assessment, such as time and reimbursement issues, liability concerns, a lack of awareness, and challenges regarding the autonomy of patients. To help facilitate the uptake of this practice, participants suggested that the use of self-administered tools be paired with post-screen discussions with practitioners [37].
Instead of using standardized tools to assess the needs and risks of caregivers, primary care physicians utilize informal, unstructured discussions to gather information. There are varying types of referrals and topics discussed. Evidence indicates that there is a lack of translation of caregivers’ assessments between research and practice [38].
Although the perception of caregivers in identifying needs is often regarded as the primary factor influencing the identification of needs, it is not always the sole basis for making decisions regarding the services required. In addition to the caregiver’s perception, other factors, such as the availability of resources and the cost of services, are also considered to determine the appropriate program for addressing the needs of individuals. This is because, in both social and health care, it is essential to understand what services are needed to prevent harm and how they are delivered [39].
There is a lot of evidence indicating that there are unmet needs among individuals with dementia, which are linked to various factors such as psychological distress and a lack of daytime activities. These issues contribute to the poor social health of the individuals. Most informal caregivers also reportedly have inadequate information about the disease’s trajectory, post-diagnostic care, and home support. On the contrary, formal caregivers reportedly have related information needs [40].
11. Caregiver competency and training needs
A survey on caregiver competency and training needs was conducted. Compared to the external observers, caregivers were more likely to assess themselves higher in various aspects of their job performance. For instance, they were more likely to say that they are capable of recording and reporting information, understanding major illnesses, and ensuring safety and infection control. Both external observers and caregivers agreed that it is important for caregivers to undergo training. They preferred to receive one to two hours of additional training every year. The difference between the assessments of caregivers by external observers and their self-evaluations was significant. This suggests that training and re-training of caregivers are needed [41].
12. Individual and protective factors
Even though the impact of providing care is immense, many factors can help protect the well-being and health of caregivers. According to studies, the quality of life for caregivers improves significantly if they have a good relationship with their patients [42] and a supportive network [43]. They also possess positive personality traits that help them cope with their environment. Having a greater level of collaboration and agreement between two caregivers can enhance their effectiveness and involvement. Addressing certain health-related conflicts can also improve the capacity of caregivers to support older individuals [44].
Social support can help buffer stress, which is a common factor that can affect the health and well-being of patients. It can also influence the different processes of illness and the treatment of these conditions. One of the most important factors that caregivers must consider is their self-esteem. Having a positive personality trait can help them cope well with the stressful situations they have to face. Low self-esteem can lead to a cycle of reluctance to ask for assistance and restricted social connections, which can worsen the caregiver’s burden. However, having a strong self-esteem can help caregivers manage their stress levels. Resilient self-esteem can also help caregivers reduce their anxiety and improve their quality of life when dealing with stressful situations. Being resilient is also linked to the effectiveness of caregiving. It can help a caregiver maintain a positive quality of life and avoid experiencing negative effects from their actions. Caregivers who felt secure in their decision-making abilities and did not feel pressured were more satisfied with their lives [45]. Evidence suggests that a multidisciplinary team, supported through welfare systems, should be created to support caregivers [29].
13. Knowledge, attitude, and practices of caregivers
Although most caregivers possess a good understanding of the disease, those who care for individuals with dementia often exhibit a negative attitude toward it. The findings of this study indicate that a comprehensive evaluation of the attitudes and knowledge of these caregivers is necessary to improve the quality of care for both the patients and the caregivers [46].
Lack of awareness regarding the use of aerosol therapy and controller medications is a major issue that affects the quality of life for people with asthma. In addition, children with asthma often do not receive enough nutritious food. This is why community groups must develop effective strategies to raise awareness about the disease [47].
Evidence revealed that most caregivers have inadequate knowledge and practice when it comes to providing for older individuals. This review provides valuable insight into the needs and knowledge of family caregivers. It recommends that further studies be conducted on the contextual factors affecting the care of older adults to identify effective solutions and improve the knowledge, practice, and support for family caregivers. The knowledge and practice of family caregivers regarding the care of older individuals are not satisfactory in several study settings. This review identified various needs of family caregivers, such as access to information about the activities of the elderly, training from healthcare professionals, financial issues, health services, and legal concerns. The lack of support for family caregivers has been identified as a major issue that affects the quality of life of older individuals. This review recommends that further studies be conducted on the various needs of family caregivers. These studies should also identify effective ways to improve their knowledge and practice [48].
The evidence suggests that there is a need for regular educational programs for caregivers of people with epilepsy. This study can help develop effective resources for those who are looking after their loved ones [49].
The knowledge gap regarding epilepsy among caregivers has been identified. This issue can be addressed by improving the attitudes and practices of those who look after children with epilepsy to enhance the overall quality of life for children with epilepsy [50].
Family members and caregivers must take the necessary steps to improve their attitudes toward their loved ones with Alzheimer’s disease. This can be achieved through various psychosocial interventions and referrals to the appropriate Alzheimer’s associations [51].
14. Coping and adjustment in caregivers
14.1 Use of problem- versus emotion-focused coping
Compared to non-caregivers, caregivers relied less on positive strategies and used problem-focused coping. These types of coping methods are known to be more adaptive and reduce psychological distress [52].
Several studies have shown that caregivers use problem-focused strategies to reduce their burden [53]. Some of these strategies include reducing their work hours, using paid help, taking advantage of social support, and integrating care into their daily routines. They also accept financial hardship and incorporate care into family culture. Other problem-focused coping strategies involve acting or modifying behavior in the client’s surroundings to reduce labor and time spent. These can include dealing with the client’s physical limitations, managing their health, communicating with them, and finding humor [53–58].
According to Williams et al., in 2014, problem-focused methods involved conversing with others and reviewing the health conditions of the client to gain a greater sense of control [58].
15. Use of cognitive strategies
Some cognitive strategies focused on the perception of the caregiver's role. Caregivers reported that appreciating the caregiver’s role and its benefits, finding meaning in their experiences, and maintaining autonomy helped them adapt to the situation [59–61].
Caregivers reported that reframing their experiences helped them cope with their situation. They also found humor in their expressions when they were feeling helpless. Some people who chose to view their caregiving as a voluntary act of compassion stated that adopting a gain mentality instead of a loss mentality was beneficial [61].
16. Factors associated with psychological adjustment
Numerous factors can be linked to psychological adjustment. Social support is known to be associated with positive adjustment, as it can help reduce distress and improve the health of caregivers [62, 63].
In 2015, Wong et al. found that a strong and positive relationship between the caregiver and their spouse was associated with positive adjustment [64]. In addition, regular positive social interactions were regarded as vital factors that could help promote resilience and adjustment [56, 65, 66].
According to the caregivers, social opportunities that allow them to share information and experiences positively affect their outcomes and adjustment [55, 56].
17. Harmonizing caregiver needs assessment across service settings, countries, and cultures
The various sectors of the health and social care industry are often characterized by their institutional boundaries, which makes it difficult to bridge these gaps, especially in countries with large and diverse populations. They also lack coordinated funding streams and national health systems. In countries with small and socially cohesive populations, such as Denmark, the public is responsible for providing a safety net for older adults. However, in developed countries, this responsibility is often unevenly distributed and underfunded. The main gaps in the assessment of the needs of older adults stem from the perception of the private sector as primarily responsible for providing care. This can affect the expectations of caregivers and their willingness to provide information about their needs. In addition, when needs are assessed using measures developed in other languages, the translation of the information cannot be considered fully comparable to that of the target group. To improve the assessment of the needs of older adults, a cross-cultural collaboration is needed. This can help create a framework for developing effective and efficient tools and methods. The goal of the assessment is to provide the best possible care and support to individuals with dementia and their caregivers [67].
18. The effect of the family-centered empowerment model
Individuals caring for a loved one suffering from multiple sclerosis are at risk of experiencing care burden, which can negatively affect their quality of life. The goal of this study is to determine the effects of family-centered empowerment model (FCEM) on the caregiver’s care burden. The results of the study revealed that all demographic attributes were homogeneous. Before the intervention, there had been no significant difference between the two groups concerning the mean score of care burden. The repeated measures test also did not reveal any significant interaction between the two groups in terms of time and treatment. The effects of the FCEM on alleviating the care burden were not significant. It is important to keep in mind the various factors that affect the intervention’s impact on the care burden [68].
19. Family caregivers’ processes to support patient self-management
The family caregiver’s process in supporting their loved one with a chronic and life-limiting illness includes focusing on the patient’s needs, activating resources to assist them, and helping them live with a chronic, life-limiting illness.
20. Focusing on the patient’s illness needs
The goal of the process is to provide family members with the necessary skills and responsibilities to help their loved ones manage their illness. This process involves learning about the patient’s health condition and developing strategies to support their self-management. In addition to learning about the patient’s illness, family caregivers can also provide the patient with the necessary support. Through this process, family members can gain essential information about their loved ones’ health conditions. They can also learn the skills they can use to support their loved ones [69–72].
According to the article’s authors, various aspects of the support process are involved in the care of patients. Some of these include being able to encourage the patient’s emotional and physical health, acting as a patient advocate, and providing practical help with household chores [11].
The activities of family caregivers vary depending on the patient’s ability and willingness to manage their health conditions. For instance, the activities of a family caregiver may be focused on helping the patient manage their health conditions, or they may be involved in other aspects of the support process. The patient’s health condition, the type of care they are receiving, and the value of their resources all play a role in the development of the partnership between the patient and the caregiver. The concept of focusing on the needs of patients refers to various types of partnerships between family members and patients. For instance, one of the partners may assist the patient with scheduling an appointment or perform other tasks on their behalf, whereas the other partner may provide the patient with minimal support [11].
21. Activating resources to support oneself as a family caregiver
The concept of activating resources to support oneself as a family caregiver is a process that involves the utilization of various resources to help the individual maintain and improve their role in patient management [11]. Various resources are reflected in psychosocial [73–75] and spiritual domains [76]. Some of the skills and tasks that family caregivers can perform when they activate resources include praying, seeking emotional support, and utilizing respite care. Family caregivers can vary in the extent to which they use their resources depending on the needs of their patients over time. According to Williams and colleagues, family caregivers need to activate their resources to sustain their caregiving duties. They noted that those who utilized multiple self-care techniques coped well with the emotional and physical challenges of caring for a loved one [76].
22. Supporting a patient living with a chronic, life-limiting illness
The process of supporting a patient living with a chronic, life-limiting illness involves various skills and tasks, such as managing one’s own emotions, addressing the physical health of the patient, and making sense of being a caregiver. Family caregivers also have to address the high emotional burden that they carry [11].
In 2015, Applebaum et al. published a study showing how physical and emotional issues affect the well-being of family caregivers. It highlighted the overlapping responsibilities of managing one’s physical and emotional health [77].
Some of the tensions that family members experience when it comes to supporting their patients revolve around balancing their own health needs with supporting the patients’ needs versus advocating on the patient’s behalf. They suggest that this type of support should be prioritized. Caregivers experience a wide range of emotions when it comes to supporting their patients [11].
Clinicians also play a vital role in supporting family caregivers in making informed decisions regarding their health. They should assess the various aspects of the family caregiver’s role and provide them with the necessary resources to improve their quality of life [78].
Family caregivers should be referred to mental health experts to enhance their stress management, coping capacity, and overall quality of life. Case management, government support, and comprehensive care provided by specialists and health professionals can help them manage their own mental and emotional well-being. An effective intervention for family caregivers should be developed. Family caregiver-specific components should be included in multi-component interventions designed to improve the self-management of patients. The intervention program must be carried out properly. It should involve an initial assessment designed to identify the multiple skills needed to improve their well-being. In addition to the usual multi-component interventions, it is also important that the approach be expanded to include other types of interventions aimed at improving the self-management of patients [11].
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Written By
Fatma Abdalla Mohamed Abdalla
Submitted: 12 August 2025Reviewed: 13 August 2025Published: 10 December 2025
Open access peer-reviewed chapter
