Caregiver Burden

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.

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.R. S. Lazarus, S. Folkman: ''Stress, appraisal, and coping''. Springer, New York 1984.
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,C. S. Carver: ''You want to measure coping but your protocol's too long: Consider the brief COPE.'' In: ''International Journal of Behavioral Medicine.'' 1997, 4(1), pp. 92–100. these efforts can focus on problem management or emotional regulation. Dysfunctional strategies are possible, too. StudiesC. Cooper, C. Katona, M. Orrell, G. Livingston: ''Coping strategies, anxiety and depression in caregivers of people with alzheimer's disease.'' In: ''International Journal of Geriatric Psychiatry.'' 2008, 23(9), pp. 929–936. V. E. Di Mattei, A. Prunas, L. Novella, A. Marcone, S. F. Cappa, L. Sarno: ''The burden of distress in caregivers of elderly demented patients and its relationship with coping strategies.'' In: ''Neurological Sciences.'' 2008, 29(6), pp. 383–389. 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.E. Gräßel, R. Adabbo: ''Perceived burden of informal caregivers of a chronically ill older family member: Burden in the context of the transactional stress model of Lazarus and Folkman.'' In: ''Journal of Gerontopsychology and Geriatric Psychiatry.'' 2011, 24(3), pp. 143–154. 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.T. M. Liew, N. Luo, W. Y. Ng, H. L. Chionh, J. Goh (2010):
Predicting gains in dementia caregiving.
' In: ''Dementia and Geriatric Cognitive Disorders, 29''(2), pp. 115-122. This may be the feeling of being needed or the knowledge that they have acquired new skills etc.A. M. Baronet (2003):
The impact of family relations on caregivers' positive and negative appraisal of their caregiving activities.
' In: ''Family Relations, 52''(2), pp. 137-142.

Triggers for caregiver burden

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.

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). StudiesE. Gräßel: ''Belastung und gesundheitliche Situation der Pflegenden. Querschnittuntersuchung zur häuslichen Pflege bei chronischem Hilfs- oder Pflegebedarf im Alter.'' Hänsel-Hohenhausen, Egelsbach/ Frankfurt am Main/ Washington 1997. ''German Study: Burden and health situation of caregivers. A cross-sectional examination about the home care of chronically care requiring elderlies.''E. Gräßel: ''Subjektive Belastung und deren Auswirkungen bei betreuenden Angehörigen eines Demenzkranken - Notwendigkeit der Entlastung.'' In: G. Stoppe, G. Stiens (Eds.): ''Niedrigschwellige Betreuung von Demenzkranken. Grundlagen und Unterrichtsmaterialien.'' 2009, pp. 42–47. ''German book section: Subjective burden and its effects in caring relatives of dementia patients - Need for relief. In: Low-threshold care of people with dementia. Basics and teaching materials.''M. Grossfeld-Schmitz, C. Donath, R. Holle, J. Lauterberg, S. Ruckdaeschel, H. Mehlig, P. Marx, S. Wunder, E. Gräßel
''Counsellors contact dementia caregivers - predictors of utilisation in a longitudinal study.''
In: ''BMC Geriatrics.'' 2010, 10:24. showed that four aspects are particularly burdensome:
* Care costs much energy
* Desire for recovery
* Too little time for own interests
* Sadness over the fate of the supported person

Meaning of subjective burden

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. 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.

Impact on health

Pinquart and Sörensen (2003)M. Pinquart, S. Sörensen
''Differences between caregivers and noncaregivers in psychological health and physical health: A meta-analysis.''
In: ''Psychology and Aging.'' 2003, 18(2), pp. 250–267. 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 another extensive meta-analysisM. Pinquart, S. Sörensen
''Correlates of physical health of informal caregivers: A meta-analysis.''
In: ''Journal of Gerontology: Psychological Sciences.'' 2007, 62B(2), pp. 126–137. Pinquart and Sörensen could show that the subjective burden is an important predictor of the health of carers.

Risk of mortality

StudiesSchulz, R., Beach, S. R. (1999)
''Caregiving as a risk factor for mortality: The caregiver health effects study.''
In: ''The Journal of the American Medical Association.'' 1999, 282(23), pp. 2215–2219.M. Perkins, V. J. Howard, V. G. Wadley, M. Crowe, M. M. Safford, W. E. Haley, G. Howard, D. L. Roth (2013)
''Caregiving strain and all-cause mortality: Evidence from the REGARDS study.''
In: ''The Journal of Gerontology: Series B. 68''(4), pp. 504-512. 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.D. O'Reilly, S. Connolly, M. Rosato, C. Patterson (2008)
''Is caring associated with an increased risk of mortality? A longitudinal study.''
In: ''Social Science & Medicine. 67''(8), pp. 1282-1290. D. L. Roth, W. E. Haley, M. Hovater, M. Perkins, V. G. Wadley, S. Judd (2013)
''Family caregiving and all-cause mortality: Findings from a population-based propensity-matched analysis.''
In: ''American Journal of Epidemiology. 178''(10), pp. 1571-1578. D. L. Roth, L. Fredman, W. E. Haley (2015)
''Informal caregiving and its impact on health: A reappraisal from population-based studies.''
In: ''The Gerontologist.'' (2015).

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,C. Cooney, R. Howard, B. Lawlor (2008)
''Abuse of vulnerable people with dementia by their carers: Can we identify those most at risk?''
In: ''International Journal of Geriatric Psychiatry 21''(6), pp. 564-571. mainly due to challenging behaviour of the person in need of care.M. R. Hansberry, E. Chen, M. J. Gorbien
''Dementia and elder abuse.''
In: ''Clinics in Geriatric Medicine.'' 2005, 21(2), pp. 315–332. 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.
M. Grafström, A. Nordberg, B. Winblad: ''Abuse is in the eye of the beholder. Report by family members about abuse of demented persons in home care. A total population-based study.'' In: ''Scandinavian Journal of Social Medicine.'' 1993, 21(4), pp. 247–255.R.-M. Karrasch, M. Reichert
''Subjektive Beurteilungen und Wahrnehmungen von Pflegenden und Gepflegten in der Partnerpflege.''
In: ''Zeitschrift für Gerontopsychologie und -psychiatrie.'' 2008, 21(4), pp. 259–265. ''German Study: Subjective evaluation and perception of caregivers and cared persons in the spouse care setting.''

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.S. Kurasawa, K. Yoshimasu, M. Washio, J. Fukumoto, S. Takemura, K. Yokoi, Y. Arai, K. Miyashita (2012)
''Factors influencing caregivers’ burden among family caregivers and institutionalization of in-home elderly people cared for by family caregivers.''
In: ''Environmental Health and Preventive Medicine. 17''(6), pp. 474-483. In the care of people with dementia, there is consistent evidence: The higher the caregiver burden, the more likely is the institutionalization.K. Eska, E. Gräßel, C. Donath, L. Schwarzkopf, J. Lauterberg, R. Holle
''Predictors of institutionalization of dementia patients in mild and moderate stages: A 4-year prospective analysis.''
In: ''Dementia and Geriatric Cognitive Disorders Extra.'' 2013, 3(1), pp. 426–445.N. Hirono, N. Tsukamoto, M. Inoue, Y. Moriwaki, E. Mori: ''Predictors of long-term institutionalization in patients with alzheimer's disease: Role of caregiver burden.'' In: ''No To Shinkei.'' 2002, 54(9), pp. 812–818.A. Nobili, E. Riva, M. Tettamanti, U. Lucca, M. Liscio, B. Petrucci, G. S. Porro: ''The effect of a structured intervention on caregivers of patients with dementia and problem behaviors: a randomized controlled pilot study.'' In: ''Alzheimer disease and associated disorders.'' 18(2), pp. 75–82K. Yaffe, P. Fox, R. Newcomer, L. Sands, K. Lindquist, K. Dane, K. E. Covinsky
''Patient and caregiver characteristics and nursing home placement in patients with dementia.''
In: ''The Journal of the American Medical Association.'' 2002, 287(16), pp. 2090–2097.

Measuring caregiver burden

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.

In Anglo-American countries, a number of burden scales have been developed; e.g. the Burden Interview,S. H. Zarit, K. E. Reever, J. Bach-Peterson
''Relatives of the impaired elderly: Correlates of feelings of burden.''
In: ''The Gerontologist.'' 1980, 20(6), pp. 649–655. the Caregiver Strain IndexB. C. Robinson
''Validation of a caregiver strain index.''
In: ''Journal of Gerontology.'' 1983, 38(3), pp. 344–348. and the Cost of Care Index.J. I. Kosberg, R. E. Cairl, D. M. Keller
''Components of burden: Interventive implications.''
In: ''The Gerontologist.'' 1990, 30(2), pp. 236–242. The Burden Scale for Family Caregivers, which has been developed in Germany, is now available in 20 languages.

Burden Scale for Family Caregivers (BSFC)

The BSFC exists in a detailed version with 28 items, and in a short, more efficient version (BSFC-s) with ten items.

Compared to other burden scales, the BSFC has two benefits. There is a long and a short version, both validated in separate studies. Furthermore, both versions are free in 20 languages, including an introduction on evaluation and interpretation.

Development

A first, reliable and valid version of the German version was published in 1993.E. Gräßel, M. Leutbecher: ''Häusliche Pflege-Skala HPS zur Erfassung der Belastung bei betreuenden oder pflegenden Personen.'' Vless, Ebersberg 1993. ''German publication: Burden Scale for Family Caregivers to measure the burden of caregivers.'' In 2001, the validity was tested and confirmed to a large sample of both dementia and for other causes of care requirement again.E. Gräßel: ''Häusliche Pflege-Skala HPS zur Erfassung der Belastung bei betreuenden oder pflegenden Personen.'' 2nd, revised edition. Vless, Ebersberg 2001. In 2003, the English version has been validated.E. Gräßel, T. Chiu, R. Oliver: ''Development and validation of the Burden Scale for Family Caregivers.'' Comprehensive Rehabilitation and Mental Health Services, Toronto (Canada) 2003. In 2014, the validation study for the short versionE. Gräßel, H. Berth, T. Lichte, H. Grau
''Subjective caregiver burden: Validity of the 10-item short version of the burden scale for family caregivers BSFC-s.''
In: ''BMC Geriatrics.'' 2014, 14, S. 23. and an extended validation of the original versionH. Grau, E. Gräßel, H. Berth: ''The subjective burden of informal caregivers of persons with dementia: extended validation of the German language version of the Burden Scale for Family Caregivers (BSFC).'' In: ''Aging & Mental Health.'' 2014, pp. 1–10, . have been published.

Scale

The BSFC consists of 28 items in the detailed or 10 items in the short version. The caregivers have to rate these items on a four-point scale from “strongly agree” to “strongly disagree”.

An evaluation is possible both on item level and on score level. A differentiated detection of the critical aspects of home care is possible with the analysis on item level. The score measures the total burden. This is an important factor to judge the caregiver's situation.

Caregivers´ Daily Issues (CDIs)

The CDIs deal with 9 main issues of caregivers based on the topical analysis of caregivers' social media communication. A longitudinal analysis of 100 dyads (caregiver vs person with Alzheimer disease) revealed the following structure of issues. Text was copied from this source, which is available under
Creative Commons Attribution 4.0 International License

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 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) 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:A. L. Silva, H. J. Teixeira, M. J. Teixeira, S. Freitas (2013)
''The needs of informal caregivers of elderly people living at home: An integrative review.''
In: ''Scandinavian Journal of Caring Sciences. 27''(4), pp. 792-803. .
# Information and training
# Professional support
# Effective communication
# 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 to preserve the autonomy of the person in need of care.H. Mollenkopf (2007): ''Technik hilft pflegen - Möglichkeiten technischer Unterstützung.'' In: ''Demenz'', 4/2007, pp. 7-11. ''German publication: Technology helps to care - possible technical assistance.''

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.G. Lamura, E. Mnich, B. Wojszel, M. Nolan, B. Krevers, L. Mestheneos, H. Döhner (2006)
''Erfahrungen von pflegenden Angehörigen älterer Menschen in Europa bei der Inanspruchnahme von Unterstützungsleistungen: Ausgewählte Ergebnisse des Projektes EUROFAMCARE.''
In: ''Zeitschrift für Gerontologie und Geriatrie. 39''(6), pp. 429-442. . ''German publication: The experience of family carers of older people in the use of support services in Europe: selected findings from the EUROFAMCARE project.''

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. 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

# Services should be made better known.
# The regional availability of support services should be made increased.
# Case management services should increase the effectivity of unburdening concepts.
# Public financial support should be made more available.
# The basic conditions of caregiving should allow the combination of care and occupation.
# Job conditions should be developed. No disadvantages should arise for caregivers who restrict the scope of their employment or temporarily give it up completely.
# Language barriers should be reduced. Low-threshold offers in information, counselling and support should be intercultural orientated.
# Internet based support should be extended.
# There is a lack of qualitative empirical studies on the impact of unburdening interventions. Evidence based health services research should focus on that point.E. Gräßel, E.-M. Behrndt: ''Belastungen und Entlastungsangebote für pflegende Angehörige.'' In: ''Pflege-Report 2016'', in press. Stuttgart: Schattauer. ''German book section: Burden and unburdening interventions for caregivers.''

References

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Caregiving
Nursing
Psychological stress