Caregiver burden

Caregiver burden, also called caregiver burnout, is a multidimensional concept of caregiving where carers experience physical, emotional and mental exhaustion due to caregiving for someone else.^[1][2] A nationwide survey shows that 32% and 19% of carers in the United States experience high and medium caregiver burden, respectively, while carers and their feeling are often neglected in clinical settings.^[3]

Definitions

Modern nursing and caregiving, which emerged in the 18th century, were largely centred on women’s self-sacrificing service, with little documentation of the negative aspects of caregiving responsibilities. It was not until the 1950s that researchers began to focus on the hardships and suffering experienced by caregivers. Peter Townsend (1957), after interviewing working-class men and women in East London, England, found that 22% of his study participants experienced “a strain of illness” due to the transition from employment to caregiving.^[4]

In the 1960s, Grad and Sainsbury (1963) first defined the burden of caregiving as any cost to the family. This definition was later refined by Hoenig and Hamilton (1966) and Platt and Hirsch (1981) to distinguish between objective burden, which refers to specific activities and events related to negative caring experiences, and subjective burden, which relates to caregivers' personal emotions and experiences. Subjective burden encompasses the emotional strain caregivers endure, while objective burden includes tangible aspects of caregiving that contribute to negative experiences. Various terms to describe caregiver burden were also used, such as caretaker role fatigue, spousal burnout, and role engulfment.^[4][2][5]

Despite the variation in terminology, these terms consistently depict a situation where caregivers lack sufficient physical and mental resources to meet the needs of the care recipient. This burden is not solely related to the actual duties imposed by care recipients but is shaped by the emotional context of the caregiving situation and the availability of resources.^[4] In some cultures, the difficulties caused by caregiving is not always understood as a burden due to moral expectations of caregiving.^[6]

Risk factors

Caregiver burden comes out when the caregiver perceives the home care situation as a negative experience. Caregivers are typically not trained. Caring is a serious challenge for them. An intensive adaptation to the care situation is necessary.^[7] The burden is mainly associated with carer's characteristics and care provision, rather than chronic conditions of care recipients, except for dementia.^[8] For people with dementia, their behavioural problems or psychological symptoms are the main contributor to caregiver burden.^[9]

Several factors associated with carers contribute to the risk of caregiver burden, including gender, education level, living arrangements, mental health, social support, financial stability, caregiving intensity, and autonomy in assuming the caregiving role. Studies indicate that female caregivers are particularly vulnerable, as they are more likely to take on caregiving responsibilities and experience emotional distress. Lower levels of education may also increase susceptibility, as caregivers with limited knowledge and resources may struggle to navigate complex healthcare needs. Residing with the care recipient has been identified as a significant risk factor, as it often leads to continuous exposure to the challenges of caregiving without respite. The emotional toll of 24/7 caregiving, especially in cases involving chronic illnesses such as dementia, cancer, or end-of-life care, can be particularly severe. Additionally, care transitions, such as moving a patient from hospital to home, often increase the caregiver's responsibilities and stress levels, further exacerbating caregiver burden.^{[3][10][11][12]}

Measurement

There exist a variety of instruments that measures caregiver well-being, with caregiver burden being one of the most measured domains.^[13] The instruments includes the Zarit Burden Interview (ZBI),^[14] the Caregiver Strain Index^[15] and the Cost of Care Index,^[16] Burden Scale for Family Caregivers,^[17][18] Caregivers' Daily Issues.^[19]

ZBI is the most widely used instrument to measure caregiver burden. Initially created by Zarit et al. as a 29-item self-report questionnaire, it evaluates the challenges faced by informal caregivers, including physical, emotional, social, and financial strain, along with their relationship with the care recipient. It was later refined into a more concise 22-item version.^[20] The instrument has been translated and validated in a variety of languages, including Chinese,^[21] Italian,^[22] Persian,^[23] etc.

Impact

Carers' own health

A study that investigated a variety of factors and their association with caregiver burden in Amyotrophic Lateral Sclerosis (ALS), found that it was more subjective factors (i.e. the caregiver’s quality of life and psychological distress), rather than objective ones (such as the caring situation or the condition of the patient) that were associated to burden.^[24] Because the caregiver burden may be felt strongly by one person and not at all by another, regardless of the caregiving situation, it is considered to be subjective and it may be called the “subjective burden”. The subjective burden is considered to be one of the most important predictors of negative outcomes from the home care situation.^[7]

Pinquart and Sörensen (2003) found that while caregivers are generally only slightly less physically healthy than non-caregiving relatives, they reported depressive symptoms significantly more often, pointing to a negative effect on their mental health.^[25] This meta-analysis did not consider the impact of subjective burden. In addition, a recent published paper showed a high frequency of depression and anxiety levels in caregivers of adult people with epilepsy.^[26] In another extensive meta-analysis, Pinquart and Sörensen (2007) could show that the subjective burden is an important predictor of the health of carers.^[27]

Caregiver burden is also associated with an increased mortality of sponsal carers who felt burdensome due to care provision.^[28] Thus, it is not the home care per se that is a risk but the subjective burden. Without consideration of the caregiver burden, the mortality of caregivers is even slightly reduced compared to non-caregivers.^[29][30][31]

Caring styles and decisions

People who experience caregiver burden can display a wide range of behaviors towards the person in need of care, from loving devotion to abusive behavior (which can manifest as neglect and/or mistreatment). The most common form of abusive behavior is verbal aggression,^[32] mainly due to challenging behaviour of the person in need of care.^[33] Researchers found that people experiencing caregiver burden are more likely to display abusive behavior and other negative caring styles toward the individuals they care for than those who are not experiencing caregiver burden. ^[33][34][35]

The caregiver burden often influences the caregiver's decision to eventually institutionalize. Caregiver burden is particularly associated with the care of people with dementia, meaning that the likelihood of institutionalization is especially heightened in those experiencing caregiver burden who care for people suffering from dementia.^[36] In the care of people with dementia, there is consistent evidence: The higher the caregiver burden, the more likely is the institutionalization.^{[37][38][39][40]}

Interventions

Various support services are available, such as caregiver counselling, professional training, self-help groups, home nursing services, and assistive technologies like smart lighting, which help maintain the independence of the person receiving care.^[41] Unburdening interventions for caregivers should consider four central aspects:^[42]

1. Information and training
2. Professional support
3. Effective communication
4. Public and financial support

Among the technological tools designed for caregivers, mobile applications play a significant role. These apps enable caregivers to monitor the health of care recipients, access educational resources on caregiving, and connect with others in similar situations.^[43] At present, most caregiving apps concentrate on practical aspects, such as providing information, offering consultations, facilitating social support for care recipients, and delivering training.^[44] However, there is potential for these apps to expand their focus to include features that support caregivers' own well-being, such as mental health support, social networking, experience-sharing, and financial guidance.^[45]Another crucial source of support for caregivers comes from family, friends, and acquaintances. These individuals provide both emotional and practical assistance and often help caregivers access additional support services.^[46]

Walter and Pinquart (2020) found that such interventions for carers, mostly with studies from high-income countries, can yield small but statistically significant effects in improving carers' wellbeing.^[47] The interventions to support carers of people with demenetia may be more effective in low- and middle-income countries, potentially due to limitations in study design or the lower baseline health conditions resulting from inadequate care quality.^[48] A 2021 Cochrane review found that remotely delivered interventions—including support, training, and information—can help reduce caregivers' burden and alleviate symptoms of depression.^[49]