Caregiver burden

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Caregiver burden is the stress which is perceived by caregivers due to the home care situation. The subjective burden is considered to be one of the most important predictors of negative outcomes from the home care situation.

Contents

Definition

The concept of caregiver burden was introduced in the 1960s, distinguishing between objective and subjective aspects of caregiving. Objective burden arises from specific caregiving tasks, while subjective burden typically stems from the emotional strain caused by the excessive demands and potential embarrassment associated with caring for recipients. Various other terms, such as caregiver role fatigue, spousal burnout, and role engulfment, are also used to describe this phenomenon. 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. [1]

Theory

From a scientific perspective, caregiver burden is a theoretical construct. The conceptual basis for the appraisal of the care situation is the Transactional Model of Lazarus and Folkman. [2] The subjective evaluation of the care situation (stressor) by the caregivers is critical for the development and maintenance of subjective burden.

According to the Transactional Model, people deal with stressful situations by appraisals of stressor and resources. The primary appraisal deals with the individual meaning of the specific stressor, which is the care situation in this case. The secondary appraisal analyzes the own abilities and resources to cope with that situation. On this basis, the individual coping efforts are used to deal with the stressful situation. As per Carver, [3] these efforts can focus on problem management or emotional regulation. Dysfunctional strategies are possible, too. Studies [4] [5] found that a high caregiver burden often comes along with dysfunctional strategies what means activities which don’t solve the problem but worsen it (e.g. self-criticism, substance abuse).

The (dis)balance between burden/vulnerabilities and resources of the caregiver determines the consequences of a care situation. [6] Home care can result in positive as well as negative experiences.

Regardless of the caregiver burden, relatives can experience benefits - positive consequences - of the home care situation. [7] This may be the feeling of being needed or the knowledge that they have acquired new skills etc. [8]

Causes

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. [6]

The caregiver burden can be based on a variety of aspects of the care situation (e.g. lack of recovery time, challenging behavior of the care requiring person, limitation of social activities and contacts). Studies [9] [10] [11] showed that four aspects are particularly burdensome:

Measuring

The assessment of caregiver burden enables to judge the situation of the caregiver. The correct measurement of subjective burden is necessary to draw conclusions about the effectiveness of family interventions.The care situation is an important, highly specific stressor which should be treated with specific interventions. A measurement with general stress-scales is therefore not useful, because in this case the score represents all kind of stress, indiscriminately of its origin. Valid, economic and internationally standardized measurement tools for the specific stressful situation of family caregivers are therefore inevitable.

A number of burden scales have been developed, which includes the Zarit Burden Interview, [12] the Caregiver Strain Index [13] and the Cost of Care Index, [14] Burden Scale for Family Caregivers, [15] [16] Caregivers' Daily Issues. [17]

Impact

Negative outcomes are often not determined by the specifics of the caregiving situation itself, but by the reaction and response of the caregiver. The term “caregiver burden” refers to the high level of stress that some caregivers may feel in response to the situation. 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. [18] 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. [6]

Impact on health

Pinquart and Sörensen (2003) [19] researched the health of caregivers compared to the health of non-caregiving relatives. The researchers 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.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. [20] In another extensive meta-analysis [21] Pinquart and Sörensen could show that the subjective burden is an important predictor of the health of carers.

Risk of mortality

Studies [22] [23] found an increased mortality of caregiving spouses. This effect was only found for spouses who felt burdened due to the care situation. 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. [24] [25] [26]

Caring style

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, [27] mainly due to challenging behaviour of the person in need of care. [28] 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. [28] [29] [30]

Ending home care

The caregiver burden often influences the caregiver's decision to eventually institutionalize (or, "put someone in a nursing home"). 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. [31] In the care of people with dementia, there is consistent evidence: The higher the caregiver burden, the more likely is the institutionalization. [32] [33] [34] [35]

Interventions

Due to the high importance of the caregiver burden with regard to the care giving process, it is necessary to develop interventions to reduce this burden and to examine their[ clarification needed ] effectiveness. Successful interventions should be available to as many caregivers as possible. "The usefulness of an intervention is the multiplication of effectiveness and usage." (Elmar Gräßel) [6] It is therefore necessary both to develop interventions and to improve and to find ways to strengthen the awareness and use of these interventions.

Interventions and services

Unburdening interventions for caregivers should consider four central aspects: [36]

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

There are different supporting services, e.g. caregiver counselling, professional training, self-help groups, ambulant nursing services or technical help like intelligent light[ clarification needed ] to preserve the autonomy of the person in need of care. [37]

Another effective relief is the support given to caregivers by family members, friends and acquaintances. They provide emotional and instrumental support and are an important source to access supporting services. [38]

A 2021 Cochrane review found that remotely delivered interventions including support, training and information may reduce the burden for the informal caregiver and improve their depressive symptoms. [39] However, there is no certain evidence that they improve health-related quality of life. The findings are based on moderate certainty evidence from 26 studies.

Implications to strengthen and develop the informal caregiving

  1. Services should be made better known.
  2. The regional availability of support services should be made increased.
  3. Case management services should increase the effectivity of unburdening concepts.
  4. Public financial support should be made more available.
  5. The basic conditions of caregiving should allow the combination of care and occupation.
  6. Job conditions should be developed. No disadvantages should arise for caregivers who restrict the scope of their employment or temporarily give it up completely.
  7. Language barriers should be reduced. Low-threshold offers in information, counselling and support should be intercultural orientated.
  8. Internet based support should be extended.
  9. There is a lack of qualitative empirical studies on the impact of unburdening interventions. Evidence based health services research should focus on that point. [40]

Related Research Articles

<span class="mw-page-title-main">Dementia</span> Long-term brain disorders causing impaired memory, thinking and behavior

Dementia is a syndrome associated with many neurodegenerative diseases, characterized by a general decline in cognitive abilities that affects a person's ability to perform everyday activities. This typically involves problems with memory, thinking, behavior, and motor control. Aside from memory impairment and a disruption in thought patterns, the most common symptoms of dementia include emotional problems, difficulties with language, and decreased motivation. The symptoms may be described as occurring in a continuum over several stages. Dementia ultimately has a significant effect on the individual, their caregivers, and their social relationships in general. A diagnosis of dementia requires the observation of a change from a person's usual mental functioning and a greater cognitive decline than might be caused by the normal aging process.

Delirium is a specific state of acute confusion attributable to the direct physiological consequence of a medical condition, effects of a psychoactive substance, or multiple causes, which usually develops over the course of hours to days. As a syndrome, delirium presents with disturbances in attention, awareness, and higher-order cognition. People with delirium may experience other neuropsychiatric disturbances including changes in psychomotor activity, disrupted sleep-wake cycle, emotional disturbances, disturbances of consciousness, or, altered state of consciousness, as well as perceptual disturbances, although these features are not required for diagnosis.

Palliative care is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex, and often terminal illnesses. Within the published literature, many definitions of palliative care exist. The World Health Organization (WHO) describes palliative care as

"an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual".

<span class="mw-page-title-main">Geriatrics</span> Specialty that focuses on health care of elderly people

Geriatrics, or geriatric medicine, is a medical specialty focused on providing care for the unique health needs of the elderly. The term geriatrics originates from the Greek γέρων geron meaning "old man", and ιατρός iatros meaning "healer". It aims to promote health by preventing, diagnosing and treating disease in older adults. There is no defined age at which patients may be under the care of a geriatrician, or geriatric physician, a physician who specializes in the care of older people. Rather, this decision is guided by individual patient need and the caregiving structures available to them. This care may benefit those who are managing multiple chronic conditions or experiencing significant age-related complications that threaten quality of daily life. Geriatric care may be indicated if caregiving responsibilities become increasingly stressful or medically complex for family and caregivers to manage independently.

Elder abuse is a single or repeated act, or lack of appropriate action, occurring within any relationship where there is an expectation of trust, which causes harm or distress to an older person. This definition has been adopted by the World Health Organization (WHO) from a definition put forward by Hourglass in the UK. Laws protecting the elderly from abuse are similar to and related to laws protecting dependent adults from abuse.

Terminal illness or end-stage disease is a disease that cannot be cured or adequately treated and is expected to result in the death of the patient. This term is more commonly used for progressive diseases such as cancer, dementia, advanced heart disease, and for HIV/AIDS, or long COVID in bad cases, rather than for injury. In popular use, it indicates a disease that will progress until death with near absolute certainty, regardless of treatment. A patient who has such an illness may be referred to as a terminal patient, terminally ill or simply as being terminal. There is no standardized life expectancy for a patient to be considered terminal, although it is generally months or less. An illness which is lifelong but not fatal is called a chronic condition.

<span class="mw-page-title-main">Reactive attachment disorder</span> Psychological disorder that can affect children

Reactive attachment disorder (RAD) is described in clinical literature as a severe disorder that can affect children, although these issues do occasionally persist into adulthood. RAD is characterized by markedly disturbed and developmentally inappropriate ways of relating socially in most contexts. It can take the form of a persistent failure to initiate or respond to most social interactions in a developmentally appropriate way—known as the "inhibited form". In the DSM-5, the "disinhibited form" is considered a separate diagnosis named "disinhibited attachment disorder".

<span class="mw-page-title-main">Gerontological nursing</span> Specialty of nursing pertaining to older adults

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<span class="mw-page-title-main">Caregiver</span> Person helping another with activities of daily living

A caregiver, carer or support worker is a paid or unpaid person who helps an individual with activities of daily living. Caregivers who are members of a care recipient's family or social network, and who may have no specific professional training, are often described as informal caregivers. Caregivers most commonly assist with impairments related to old age, disability, a disease, or a mental disorder.

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<span class="mw-page-title-main">Reminiscence therapy</span> Intervention technique with brain-injured patients

Reminiscence therapy is used to counsel and support older people, and is an intervention technique with brain-injured patients and those who appear to have "Alzheimer's and other forms of cognitive disease."

As populations age, caring for people with dementia has become more common. Elderly caregiving may consist of formal care and informal care. Formal care involves the services of community and medical partners, while informal care involves the support of family, friends, and local communities. In most mild-to-medium cases of dementia, the caregiver is a spouse or an adult child. Over a period of time, more professional care in the form of nursing and other supportive care may be required medically, whether at home or in a long-term care facility. There is evidence to show that case management can improve care for individuals with dementia and the experience of their caregivers. Furthermore, case management may reduce overall costs and institutional care in the medium term. Millions of people living in the United States take care of a friend or family member with Alzheimer’s disease or a related dementia.

Family caregivers are "relatives, friends, or neighbors who provide assistance related to an underlying physical or mental disability for at-home care delivery and assist in the activities of daily living (ADLs) who are unpaid and have no formal training to provide those services."

<span class="mw-page-title-main">Alzheimer's disease</span> Progressive neurodegenerative disease

Alzheimer's disease (AD) is a neurodegenerative disease that usually starts slowly and progressively worsens. It is the cause of 60–70% of cases of dementia. The most common early symptom is difficulty in remembering recent events. As the disease advances, symptoms can include problems with language, disorientation, mood swings, loss of motivation, self-neglect, and behavioral issues. As a person's condition declines, they often withdraw from family and society. Gradually, bodily functions are lost, ultimately leading to death. Although the speed of progression can vary, the average life expectancy following diagnosis is three to twelve years.

Sundowning, or sundown syndrome, is a neurological phenomenon wherein people with delirium or some form of dementia experience increased confusion and restlessness beginning in the late afternoon and early evening. It is most commonly associated with Alzheimer's disease but is also found in those with other forms of dementia. The term sundowning was coined by nurse Lois K. Evans in 1987 due to the association between the person's increased confusion and the setting of the sun.

Wandering occurs when a person with dementia roams around and becomes lost or confused about their location. It is a common behavior that can cause great risk for the person, and is often the major priority for caregivers. It is estimated to be the most common form of disruption from people with dementia within institutions. Although it occurs in several types of dementia, wandering is especially common in people with Alzheimer's disease (AD). People with dementia often wander because they are stressed, looking for someone or something, attending to basic needs, engaging in past routines, or with visual-spatial problems. Other times, they may wander without aim at all.

Caregiver syndrome or caregiver stress is a condition that strongly manifests exhaustion, anger, rage, or guilt resulting from unrelieved caring for a chronically ill patient. This condition is not listed in the United States' Diagnostic and Statistical Manual of Mental Disorders, although the term is often used by many healthcare professionals in that country. The equivalent used in many other countries, the ICD-11, does include the condition.

An informal or primary caregiver is an individual in a cancer patient's life that provides unpaid assistance and cancer-related care. Caregiving is defined as the processing of assisting someone who can't care for themselves, which includes physical, mental, emotional, social, and spiritual needs. Due to the typically late onset of cancer, caregivers are often the spouses and/or children of patients, but may also be parents, other family members, or close friends. Taking care of family members at home is a complicated experience. The relationships involved constantly shift and change, in expected and unexpected ways. The expected or expected changes can negatively affect physical health, emotions, social life, and spiritual well-being of the caregiver. Informal caregivers are a major form of support for the cancer patient because they provide most care outside of the hospital environment. This support includes:

Caregiving by country is the regional variation of caregiving practices as distinguished among countries.

Jiska Cohen-Mansfield is the Igor Orenstein Chair for the Study of Geriatrics at Tel Aviv University Medical School and a professor at the Department of Health Promotion at the School of Public Health in the Sackler Medical Faculty at Tel Aviv University. She is the director of the Minerva Center for Interdisciplinary Study of End of Life at Tel-Aviv University.

References

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