Caregiver burden

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.{{Cite journal |last1=Hoffmann |first1=Rosemary L. |last2=Mitchell |first2=Ann M. |date=1998 |title=Caregiver Burden: Historical Development |url=https://pubmed.ncbi.nlm.nih.gov/10205484/ |journal=Nursing Forum |language=en |volume=33 |issue=4 |pages=5–12 |doi=10.1111/j.1744-6198.1998.tb00223.x |pmid=10205484 |issn=0029-6473 |archive-url=http://web.archive.org/web/20250204072703/https://pubmed.ncbi.nlm.nih.gov/10205484/ |archive-date=2025-02-04}}

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.{{Cite journal |last1=Hoenig |first1=J. |last2=Hamilton |first2=Marian W. |date=1966-06-01 |title=The Schizophrenic Patient in the Community and His Effect On the Household |url=https://journals.sagepub.com/doi/abs/10.1177/002076406601200301 |journal=International Journal of Social Psychiatry |language=en |volume=12 |issue=3 |pages=165–176 |doi=10.1177/002076406601200301 |pmid=5964677 |issn=0020-7640}}

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. In some cultures, the difficulties caused by caregiving is not always understood as a burden due to moral expectations of caregiving.{{Cite journal |last1=Nguyen |first1=Huong |last2=Nguyen |first2=Trang |last3=Tran |first3=Duyen |last4=Hinton |first4=Ladson |date=2021-11-29 |title="It's extremely hard but it's not a burden": A qualitative study of family caregiving for people living with dementia in Vietnam |journal=PLOS ONE |language=en |volume=16 |issue=11 |pages=e0259788 |doi=10.1371/journal.pone.0259788 |doi-access=free |pmid=34843513 |pmc=8629297 |bibcode=2021PLoSO..1659788N |issn=1932-6203 }}

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.{{cite journal |vauthors=Gräßel E, Adabbo R |date=30 August 2011 |title=Perceived burden of informal caregivers of a chronically ill older family member. |journal=Geropsych |volume=24 |issue=3 |pages=143–154 |doi=10.1024/1662-9647/a000042}} The burden is mainly associated with carer's characteristics and care provision, rather than chronic conditions of care recipients, except for dementia.{{Cite journal |last1=Riffin |first1=Catherine |last2=Van Ness |first2=Peter H. |last3=Wolff |first3=Jennifer L. |last4=Fried |first4=Terri |date=2019 |title=Multifactorial Examination of Caregiver Burden in a National Sample of Family and Unpaid Caregivers |journal=Journal of the American Geriatrics Society |language=en |volume=67 |issue=2 |pages=277–283 |doi=10.1111/jgs.15664 |pmid=30452088 |pmc=6367031 |issn=1532-5415}} For people with dementia, their behavioural problems or psychological symptoms are the main contributor to caregiver burden.{{Cite journal |last1=Chiao |first1=C.-Y. |last2=Wu |first2=H.-S. |last3=Hsiao |first3=C.-Y. |date=2015 |title=Caregiver burden for informal caregivers of patients with dementia: A systematic review |url=https://onlinelibrary.wiley.com/doi/abs/10.1111/inr.12194?_gl=1*iud2bc*_gcl_au*MjYzMTU3NDQyLjE3NDA4NTkxNjc.& |journal=International Nursing Review |language=en |volume=62 |issue=3 |pages=340–350 |doi=10.1111/inr.12194 |pmid=26058542 |issn=1466-7657}}

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.{{cite report |title=Belastung und gesundheitliche Situation der Pflegenden: Querschnittuntersuchung zur häuslichen Pflege bei chronischem Hilfs-oder Pflegebedarf im Alter. |trans-title=Burden and health situation of caregivers. A cross-sectional examination about the home care of chronically care requiring elderlies. |date=1998 |publisher=Hänsel-Hohenhausen, Egelsbach |location=Frankfurt am Main |language=German |vauthors=Gräßel E}}{{cite book |title=Niedrigschwellige Betreuung von Demenzkranken. Grundlagen und Unterrichtsmaterialien. |vauthors=Gräßel E |date=2009 |veditors=Stoppe G, Stiens G |pages=42–47 |language=German |trans-title=Low-threshold care of people with dementia. Basics and teaching materials. |chapter=Subjektive Belastung und deren Auswirkungen bei betreuenden Angehörigen eines Demenzkranken - Notwendigkeit der Entlastung. |trans-chapter=Subjective burden and its effects in caring relatives of dementia patients - Need for relief.}}{{cite journal |display-authors=6 |vauthors=Grossfeld-Schmitz M, Donath C, Holle R, Lauterberg J, Ruckdaeschel S, Mehlig H, Marx P, Wunder S, Grässel E |date=May 2010 |title=Counsellors contact dementia caregivers--predictors of utilisation in a longitudinal study |journal=BMC Geriatrics |volume=10 |issue= |pages=24 |doi=10.1186/1471-2318-10-24 |pmc=2882905 |pmid=20470365 |doi-access=free}}

There exist a variety of instruments that measures caregiver well-being, with caregiver burden being one of the most measured domains.{{Cite journal |last1=Mosquera |first1=Isabel |last2=Vergara |first2=Itziar |last3=Larrañaga |first3=Isabel |last4=Machón |first4=Mónica |last5=del Río |first5=María |last6=Calderón |first6=Carlos |date=2016-05-01 |title=Measuring the impact of informal elderly caregiving: a systematic review of tools |url=https://link.springer.com/article/10.1007/s11136-015-1159-4 |journal=Quality of Life Research |language=en |volume=25 |issue=5 |pages=1059–1092 |doi=10.1007/s11136-015-1159-4 |pmid=26475138 |issn=1573-2649}} The instruments includes the Zarit Burden Interview (ZBI),{{cite journal |vauthors=Zarit SH, Reever KE, Bach-Peterson J |date=December 1980 |title=Relatives of the impaired elderly: correlates of feelings of burden |journal=The Gerontologist |volume=20 |issue=6 |pages=649–655 |doi=10.1093/geront/20.6.649 |pmid=7203086}} the Caregiver Strain Index{{cite journal |vauthors=Robinson BC |date=May 1983 |title=Validation of a Caregiver Strain Index |journal=Journal of Gerontology |volume=38 |issue=3 |pages=344–348 |doi=10.1093/geronj/38.3.344 |pmid=6841931}} and the Cost of Care Index,{{cite journal |vauthors=Kosberg JI, Cairl RE, Keller DM |date=April 1990 |title=Components of burden: interventive implications |journal=The Gerontologist |volume=30 |issue=2 |pages=236–242 |doi=10.1093/geront/30.2.236 |pmid=2347506}} Burden Scale for Family Caregivers,{{cite journal |vauthors=Graessel E, Berth H, Lichte T, Grau H |date=February 2014 |title=Subjective caregiver burden: validity of the 10-item short version of the Burden Scale for Family Caregivers BSFC-s |journal=BMC Geriatrics |volume=14 |issue= |pages=23 |doi=10.1186/1471-2318-14-23 |pmc=3942019 |pmid=24555474 |doi-access=free}}{{cite journal |vauthors=Grau H, Graessel E, Berth H |date=2015 |title=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) |journal=Aging & Mental Health |volume=19 |issue=2 |pages=159–168 |doi=10.1080/13607863.2014.920296 |pmid=24914762 |s2cid=3212251}} Caregivers' Daily Issues.{{Cite journal |last=Bachmann |first=Pavel |date=2020-06-19 |title=Caregivers' Experience of Caring for a Family Member with Alzheimer's Disease: A Content Analysis of Longitudinal Social Media Communication |journal=International Journal of Environmental Research and Public Health |language=en |volume=17 |issue=12 |pages=4412 |doi=10.3390/ijerph17124412 |issn=1660-4601 |pmc=7345212 |pmid=32575455 |doi-access=free}}

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.{{Cite journal |last1=Loo |first1=Yu Xian |last2=Yan |first2=Shi |last3=Low |first3=Lian Leng |date=2021-04-16 |title=Caregiver burden and its prevalence, measurement scales, predictive factors and impact: a review with an Asian perspective |journal=Singapore Medical Journal |language=en |volume=63 |issue=10 |pages=593–603 |doi=10.11622/smedj.2021033 |pmid=33866708 |pmc=9728322 }} The instrument has been translated and validated in a variety of languages, including Chinese,{{Cite journal |last1=Lu |first1=Lu |last2=Wang |first2=Lie |last3=Yang |first3=Xiaoshi |last4=Feng |first4=Qiaolian |date=December 2009 |title=Zarit Caregiver Burden Interview: Development, reliability and validity of the Chinese version |url=https://onlinelibrary.wiley.com/doi/10.1111/j.1440-1819.2009.02019.x |journal=Psychiatry and Clinical Neurosciences |language=en |volume=63 |issue=6 |pages=730–734 |doi=10.1111/j.1440-1819.2009.02019.x |pmid=19781014 |issn=1323-1316}} Italian,{{Cite journal |last1=Chattat |first1=Rabih |last2=Cortesi |first2=Valeria |last3=Izzicupo |first3=Fabio |last4=Re |first4=Maria Letizia Del |last5=Sgarbi |first5=Cinzia |last6=Fabbo |first6=Andrea |last7=Bergonzini |first7=Elisa |date=June 2011 |title=The Italian version of the Zarit Burden Interview: a validation study |url=https://www.cambridge.org/core/journals/international-psychogeriatrics/article/abs/italian-version-of-the-zarit-burden-interview-a-validation-study/E52CE804506B9D71EC773C15038E3ED9 |journal=International Psychogeriatrics |language=en |volume=23 |issue=5 |pages=797–805 |doi=10.1017/S1041610210002218 |pmid=21205379 |issn=1741-203X|doi-access=free }} Persian,{{Cite journal |last1=Rajabi-Mashhadi |first1=Mohammad T |last2=Mashhadinejad |first2=Hosein |last3=Ebrahimzadeh |first3=Mohammad H |last4=Golhasani-Keshtan |first4=Farideh |last5=Ebrahimi |first5=Hanieh |last6=Zarei |first6=Zahra |date=2015-01-15 |title=The Zarit Caregiver Burden Interview Short Form (ZBI-12) in spouses of Veterans with Chronic Spinal Cord Injury, Validity and Reliability of the Persian Version |journal=Archives of Bone and Joint Surgery |language=en |volume=3 |issue=1 |pages=56–63 |pmid=25692171 |pmc=4322127 }} etc.

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.{{cite journal |vauthors=Antoniadi AM, Galvin M, Heverin M, Hardiman O, Mooney C |date=February 2020 |title=Prediction of caregiver burden in amyotrophic lateral sclerosis: a machine learning approach using random forests applied to a cohort study |journal=BMJ Open |volume=10 |issue=2 |pages=e033109 |doi=10.1136/bmjopen-2019-033109 |pmc=7050406 |pmid=32114464}} 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.

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.{{cite journal |vauthors=Pinquart M, Sörensen S |date=June 2003 |title=Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis |journal=Psychology and Aging |volume=18 |issue=2 |pages=250–267 |doi=10.1037/0882-7974.18.2.250 |pmid=12825775}} 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.{{cite journal |display-authors=6 |vauthors=João RB, Nogueira MH, Morita-Sherman ME, Alvim MK, Johnny S, Pereira H, Pinheiro HP, Cendes F, Yasuda CL |date=2022-03-09 |title=The Relationship Between Depression and Anxiety Symptoms of Adult PWE and Caregivers in a Tertiary Center |journal=Frontiers in Neurology |volume=13 |pages=766009 |doi=10.3389/fneur.2022.766009 |pmc=8959587 |pmid=35356450 |doi-access=free}} In another extensive meta-analysis, Pinquart and Sörensen (2007) could show that the subjective burden is an important predictor of the health of carers.{{cite journal |vauthors=Pinquart M, Sörensen S |date=March 2007 |title=Correlates of physical health of informal caregivers: a meta-analysis |journal=The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences |volume=62 |issue=2 |pages=P126–P137 |doi=10.1093/geronb/62.2.p126 |pmid=17379673 |doi-access=free}}

Caregiver burden is also associated with an increased mortality of sponsal carers who felt burdensome due to care provision.{{cite journal |vauthors=Schulz R, Beach SR |date=December 1999 |title=Caregiving as a risk factor for mortality: the Caregiver Health Effects Study |journal=JAMA |volume=282 |issue=23 |pages=2215–2219 |doi=10.1001/jama.282.23.2215 |pmid=10605972 |doi-access=free}} 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.{{cite journal |vauthors=O'Reilly D, Connolly S, Rosato M, Patterson C |date=October 2008 |title=Is caring associated with an increased risk of mortality? A longitudinal study |journal=Social Science & Medicine |volume=67 |issue=8 |pages=1282–1290 |doi=10.1016/j.socscimed.2008.06.025 |pmid=18667262 |s2cid=12615336}}{{cite journal |vauthors=Roth DL, Haley WE, Hovater M, Perkins M, Wadley VG, Judd S |date=November 2013 |title=Family caregiving and all-cause mortality: findings from a population-based propensity-matched analysis |journal=American Journal of Epidemiology |volume=178 |issue=10 |pages=1571–1578 |doi=10.1093/aje/kwt225 |pmc=3888278 |pmid=24091890}}{{cite journal |vauthors=Roth DL, Fredman L, Haley WE |date=April 2015 |title=Informal caregiving and its impact on health: a reappraisal from population-based studies |journal=The Gerontologist |volume=55 |issue=2 |pages=309–319 |doi=10.1093/geront/gnu177 |pmc=6584119 |pmid=26035608}}

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,{{cite journal |vauthors=Cooney C, Howard R, Lawlor B |date=June 2006 |title=Abuse of vulnerable people with dementia by their carers: can we identify those most at risk? |journal=International Journal of Geriatric Psychiatry |volume=21 |issue=6 |pages=564–571 |doi=10.1002/gps.1525 |pmid=16783768 |s2cid=5974629}} mainly due to challenging behaviour of the person in need of care.{{cite journal |vauthors=Hansberry MR, Chen E, Gorbien MJ |date=May 2005 |title=Dementia and elder abuse |journal=Clinics in Geriatric Medicine |volume=21 |issue=2 |pages=315–332 |doi=10.1016/j.cger.2004.11.002 |pmid=15804553}} 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. {{cite journal |vauthors=Grafström M, Nordberg A, Winblad B |date=December 1993 |title=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 |journal=Scandinavian Journal of Social Medicine |volume=21 |issue=4 |pages=247–255 |doi=10.1177/140349489302100404 |pmid=8310277 |s2cid=21355712}}{{cite journal |vauthors=Karrasch RM, Reichert M |date=2008 |title=Subjektive Beurteilungen und Wahrnehmungen von Pflegenden und Gepflegten in der Partnerpflege |trans-title=Subjective evaluation and perception of caregivers and cared persons in the spouse care setting. |url=http://www.psycontent.com/content/92r6735tj198q984/?p=32912791be7540b6a7ac2e4e4ab8fc50&pi=3 |url-status=bot: unknown |journal=Zeitschrift für Gerontopsychologie und -psychiatrie |language=German |volume=21 |issue=4 |pages=259–265 |doi=10.1024/1011-6877.21.4.259 |archive-url=https://archive.today/20140907120208/http://www.psycontent.com/content/92r6735tj198q984/?p=32912791be7540b6a7ac2e4e4ab8fc50&pi=3 |archive-date=2014-09-07 |access-date=2020-05-03}}

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.{{cite journal |display-authors=6 |vauthors=Kurasawa S, Yoshimasu K, Washio M, Fukumoto J, Takemura S, Yokoi K, Arai Y, Miyashita K |date=November 2012 |title=Factors influencing caregivers' burden among family caregivers and institutionalization of in-home elderly people cared for by family caregivers |journal=Environmental Health and Preventive Medicine |volume=17 |issue=6 |pages=474–483 |bibcode=2012EHPM...17..474K |doi=10.1007/s12199-012-0276-8 |pmc=3493627 |pmid=22454030}} In the care of people with dementia, there is consistent evidence: The higher the caregiver burden, the more likely is the institutionalization.{{cite journal |vauthors=Eska K, Graessel E, Donath C, Schwarzkopf L, Lauterberg J, Holle R |date=2013 |title=Predictors of institutionalization of dementia patients in mild and moderate stages: a 4-year prospective analysis |journal=Dementia and Geriatric Cognitive Disorders Extra |volume=3 |issue=1 |pages=426–445 |doi=10.1159/000355079 |pmc=3843910 |pmid=24348504}}{{cite journal |vauthors=Hirono N, Tsukamoto N, Inoue M, Moriwaki Y, Mori E |date=September 2002 |title=[Predictors of long-term institutionalization in patients with Alzheimer's disease: role of caregiver burden] |journal=No to Shinkei = Brain and Nerve |language=Japanese |volume=54 |issue=9 |pages=812–818 |doi= |pmid=12428367}}{{cite journal |vauthors=Nobili A, Riva E, Tettamanti M, Lucca U, Liscio M, Petrucci B, Porro GS |date=2004 |title=The effect of a structured intervention on caregivers of patients with dementia and problem behaviors: a randomized controlled pilot study |journal=Alzheimer Disease and Associated Disorders |volume=18 |issue=2 |pages=75–82 |doi=10.1097/01.wad.0000126618.98867.fc |pmid=15249851 |s2cid=29262125}}{{cite journal |vauthors=Yaffe K, Fox P, Newcomer R, Sands L, Lindquist K, Dane K, Covinsky KE |date=April 2002 |title=Patient and caregiver characteristics and nursing home placement in patients with dementia |journal=JAMA |volume=287 |issue=16 |pages=2090–2097 |doi=10.1001/jama.287.16.2090 |pmid=11966383 |s2cid=15307924}}

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.{{cite journal |vauthors=Mollenkopf H |date=April 2007 |title=Technik hilft pflegen - Möglichkeiten technischer Unterstützung. |trans-title=Technology helps to care - possible technical assistance. |journal=Demenz |language=German |pages=7–11}} Unburdening interventions for caregivers should consider four central aspects:{{cite journal |vauthors=Silva AL, Teixeira HJ, Teixeira MJ, Freitas S |date=December 2013 |title=The needs of informal caregivers of elderly people living at home: an integrative review |journal=Scandinavian Journal of Caring Sciences |volume=27 |issue=4 |pages=792–803 |doi=10.1111/scs.12019 |pmid=23289859}}

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.{{Cite journal |last1=Choi |first1=Seul Ki |last2=Yelton |first2=Brooks |last3=Ezeanya |first3=Victor K. |last4=Kannaley |first4=Kristie |last5=Friedman |first5=Daniela B. |date=June 2020 |title=Review of the Content and Quality of Mobile Applications About Alzheimer's Disease and Related Dementias |journal=Journal of Applied Gerontology |language=en |volume=39 |issue=6 |pages=601–608 |doi=10.1177/0733464818790187 |issn=0733-4648 |pmc=6348031 |pmid=30049239}} At present, most caregiving apps concentrate on practical aspects, such as providing information, offering consultations, facilitating social support for care recipients, and delivering training.{{Cite journal |last1=Lorca-Cabrera |first1=Jael |last2=Martí-Arques |first2=Rut |last3=Albacar-Riobóo |first3=Núria |last4=Raigal-Aran |first4=Laia |last5=Roldan-Merino |first5=Juan |last6=Ferré-Grau |first6=Carmen |date=January 2021 |title=Mobile Applications for Caregivers of Individuals with Chronic Conditions and/or Diseases: Quantitative Content Analysis |url=https://linkinghub.elsevier.com/retrieve/pii/S1386505620310893 |journal=International Journal of Medical Informatics |language=en |volume=145 |pages=104310 |doi=10.1016/j.ijmedinf.2020.104310 |pmid=33161319}} 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.{{Cite journal |last1=Bidenko |first1=Katharina |last2=Bohnet-Joschko |first2=Sabine |date=December 2022 |title=Supporting family care: a scoping app review |journal=BMC Medical Informatics and Decision Making |language=en |volume=22 |issue=1 |page=162 |doi=10.1186/s12911-022-01906-6 |issn=1472-6947 |pmc=9210723 |pmid=35729573 |doi-access=free}}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.{{cite journal |vauthors=Lamura G, Mnich E, Wojszel B, Nolan M, Krevers B, Mestheneos L, Döhner H |date=December 2006 |title=[The experience of family carers of older people in the use of support services in Europe: selected findings from the EUROFAMCARE project] |trans-title=The experience of family carers of older people in the use of support services in Europe: selected findings from the EUROFAMCARE project. |journal=Zeitschrift für Gerontologie und Geriatrie |language=German |volume=39 |issue=6 |pages=429–442 |doi=10.1007/s00391-006-0416-0 |pmid=17160738 |s2cid=39870315}}

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.{{Cite journal |last1=Walter |first1=Erik |last2=Pinquart |first2=Martin |date=2020-11-23 |title=How Effective Are Dementia Caregiver Interventions? An Updated Comprehensive Meta-Analysis |url=https://academic.oup.com/gerontologist/article-abstract/60/8/e609/5570705 |journal=The Gerontologist |volume=60 |issue=8 |pages=e609–e619 |doi=10.1093/geront/gnz118 |pmid=33226434 |issn=0016-9013}} 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.{{Cite journal |last1=Chen |first1=Frank |last2=Hu |first2=Zhiwei |last3=Li |first3=Quan |last4=Zheng |first4=Xuan |last5=Li |first5=Meizhi |last6=Salcher-Konrad |first6=Maximilian |last7=Comas-Herrera |first7=Adelina |last8=Knapp |first8=Martin |last9=Shi |first9=Cheng |last10=Consortium |first10=The STRiDE |date=2025 |title=Effectiveness of Interventions to Support Carers of People With Dementia in Low- and Middle-Income Countries: A Systematic Review and Meta-Analysis |url=https://onlinelibrary.wiley.com/doi/10.1002/gps.70054 |journal=International Journal of Geriatric Psychiatry |language=en |volume=40 |issue=3 |pages=e70054 |doi=10.1002/gps.70054 |doi-broken-date=2 March 2025 |pmid=40015952 |pmc=11867927 |issn=1099-1166}} A 2021 Cochrane review found that remotely delivered interventions—including support, training, and information—can help reduce caregivers' burden and alleviate symptoms of depression.{{cite journal |vauthors=González-Fraile E, Ballesteros J, Rueda JR, Santos-Zorrozúa B, Solà I, McCleery J |date=January 2021 |title=Remotely delivered information, training and support for informal caregivers of people with dementia |journal=The Cochrane Database of Systematic Reviews |volume=1 |issue=1 |pages=CD006440 |doi=10.1002/14651858.cd006440.pub3 |pmc=8094510 |pmid=33417236}}

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