Family caregivers

Family caregivers (also known as family carers, informal or unpaid caregivers) are relatives or friends who provide care for people struggling with their everyday activities due to age, long-term illness or disability. Unlike their formal counterparts, informal caregivers are unpaid and have no professional background in caregiving.[1] They provide physical, social, emotional, and financial support.[2] The role of family carers is widely recognised as vital for the wellbeing of people with conditions like dementia.[3][4]

There are more than 250 million family caregivers globally.[5] In 2019, informal caregivers of people with dementia provided 133 billion hours of care.[6] The majority of people living with dementia are cared for by their families or unpaid carers, especially in low- and middle-income countries.[7]

Caregiver wellbeing

Negative impacts of caregiving

Caring for a loved one can have positive effects on the caregiver, for example, feelings of mutuality, personal growth, and increased family cohesion.[8][9] However, providing long-term, unpaid care for someone can also have wide-ranging negative effects on carers' physical and mental health and on their financial situation.[10][11] The sum of physical, emotional, social, and financial challenges experienced by caregivers is referred to as caregiver burden.[12] Witnessing the decline of a loved one's cognitive and functional abilities can be emotionally distressing and overwhelming. Providing care for someone can be physically and financially demanding, especially when the individual may require assistance with activities of daily living such as bathing, dressing, toileting, and feeding.[13]

Caregiving responsibilities can limit informal caregivers' ability to engage in social activities, maintain relationships, and pursue personal interests. Many caregivers lack adequate support from family members, friends, healthcare providers, and community resources. Feeling unsupported or misunderstood can compound the challenges of caregiving and increase feelings of burden. Informal, unpaid caregivers frequently experience loneliness, social isolation, alienation, and difficulties reconciling their own needs with their role as caregiver. Many feel overwhelmed by caregiving responsibilities.[14][13]

The financial cost of caring for a family member can be substantial, including expenses for medical care, medications, in-home care services, assisted living facilities, and other related costs. Caregivers are more likely to reduce their work hours or leave their jobs entirely to provide care, leading to loss of income and financial strain. They also face difficulties when trying to re-enter employment later on.[13]

The complexity and emotional and financial impact of being a family caregiver often cause psychological distress, including depression, anxiety, guilt, and can also contribute to physical health issues.[15][16][14]

Support and interventions

There are various forms of support, services, and interventions that may improve the wellbeing of family caregivers. Effective measures include complementary formal services, training and psychoeducation, psychological therapies such as cognitive behavioural therapy, and support groups.[17][18] These different approaches can also be combined into multicomponent interventions.[17][18][19]

By country

United States

In the United States, approximately 63 millions Americans provide unpaid care to an older adult or person with a chronic health condition. The average age of family caregivers in the United States is 51 years old. Women make up the majority of the caregiver population. Of that majority, 61% identify as Non-Hispanic White individuals, compared to 16% identifying as Latino/a/e, 13% Black, and 6% Asian American, Native Hawaiian, and Pacific Islander. For caregivers that are older, the person they usually take care of are their spouses, while younger caregivers often care for older adults (e.g., their parents).[20]

Society and culture

Social psychology of caregiving

Informal caregiving for someone with an acquired disability entails role changes that can be difficult. The person with the disability becomes a care-receiver, often struggling for independence and at risk of stigmatisation.[21] Simultaneously, family and friends become informal caregivers, a demanding and usually unfamiliar role.[22] Adaptation to these role changes is complex. Caregivers and care-receivers often work together to avoid stigma and compensate for the disability.[23] However, each side experiences divergent practical, social and emotional demands which can also fracture the relationship,[24] creating disagreements and misunderstandings.

Caregivers and care-receivers have been found to disagree about many things,[25] including, care needs, risks and stress, and level of knowledge.[26] it has also been found that caregivers rate care-receivers as more disabled than care-receivers rated themselves.[27] Noble and Douglas[28] found that family members wanted intensive interventions which were support focused, whereas care-receivers placed emphasis on interventions that fostered independence. Many disagreements centre on caregivers' identity, particularly their overprotectiveness, embarrassment, independence, and confidence[25][29]

These disagreements and misunderstandings, it has been argued, stems in part from caregivers concealing the demands of care.[30] Caregivers often conceal the demands of care in order to make the person receiving care feel more independent.[31] But, this can result in the person receiving care feeling more independent than they are, and subsequently a range of misunderstandings. It has also been argued that caregivers concealing the burden of care may end up undermining their own identity, because they do not get the social recognition necessary to create a positive identity – their toil becomes invisible.[30] This has been termed 'the caregiving bind,' namely, that caregivers concealing the demands of care to protect and support the identity of the care-receiver, may end up undermining their own caregiving identity.[30]

Economics

The amount of caregiving which is done as unpaid work exceeds the amount done as work for hire.[32] In the United States, for example, a 1997 study estimated the labor value of unpaid caregiving at US$196 billion, while the formal home health care work sector generated US$32 billion and nursing home care generated US$83 billion.[32] The implication is that since so much personal investment is made in this sector, social programs to increase the efficiency and efficacy of caregivers would bring great benefit to society if they were easy to access and use.[32]

See also

References

  1. ↑ Le Toullec, Elodie; Le Gagne, Anne; Leblong, Emilie; Somat, Alain; Piette, Patrice (2025-06-13). "Assessment of burden and needs of family caregivers for the elderly, a scoping review". Frontiers in Aging. 6 1578911. doi:10.3389/fragi.2025.1578911. ISSN 2673-6217. PMC 12202512. PMID 40584229.
  2. ↑ Koh, Wei Qi; Roes, Martina; de Vugt, Marjolein; Sezgin, Duygu; Gonçalves-Pereira, Manuel; Müller, Nicole; Diaz, Ana; Casey, Dympna; Ingram, Chantal; Walden, Amy Kate; Thyrian, Jochen René; Neal, David; Comas, Adelina; Hopper, Louise (2025-11-02). "What are the unmet needs in people affected by dementia? A scoping review of reviews". Aging & Mental Health. 29 (11): 1943–1966. doi:10.1080/13607863.2025.2534406. hdl:10362/190061. ISSN 1360-7863. PMID 40696903.
  3. ↑ Chenoweth L, Cook J, Williams A (September 2021). "Perceptions of Care Quality during an Acute Hospital Stay for Persons with Dementia and Family/Carers". Healthcare. 9 (9): 1176. doi:10.3390/healthcare9091176. PMC 8469973. PMID 34574951.
  4. ↑ Gwernan-Jones R, Abbott R, Lourida I, Rogers M, Green C, Ball S, et al. (December 2020). "The experiences of hospital staff who provide care for people living with dementia: A systematic review and synthesis of qualitative studies". International Journal of Older People Nursing. 15 (4) e12325. doi:10.1111/opn.12325. hdl:10871/121324. PMID 32412167. S2CID 218649147.
  5. ↑ Neller, Sarah A.; Hebdon, Megan Thomas; Wickens, Emily; Scammon, Debra L.; Utz, Rebecca L.; Dassel, Kara B.; Terrill, Alexandra L.; Ellington, Lee; Kirby, Anne V. (2024-12-31). "Family caregiver experiences and needs across health conditions, relationships, and the lifespan: a Qualitative analysis". International Journal of Qualitative Studies on Health and Well-being. 19 (1) 2296694. doi:10.1080/17482631.2023.2296694. ISSN 1748-2631. PMC 10791097. PMID 38213230.
  6. ↑ The Lancet Public Health (September 2021). "Reinvigorating the public health response to dementia". The Lancet Public Health. 6 (10): e696. doi:10.1016/S2468-2667(21)00215-2. PMC 8516159. PMID 34563278.
  7. ↑ Global Status Report on the Public Health Response to Dementia. Geneva: World Health Organization. 2021. p. 12. ISBN 978-92-4-003324-5.
  8. ↑ Wang, Jun; Li, Xuelian; Liu, Weichu; Yang, Bing; Zhao, Qinghua; Lü, Yang; Xiao, Mingzhao (2022-09-14). "The positive aspects of caregiving in dementia: A scoping review and bibliometric analysis". Frontiers in Public Health. 10 985391. Bibcode:2022FrPH...1085391W. doi:10.3389/fpubh.2022.985391. ISSN 2296-2565. PMC 9515975. PMID 36187613.
  9. ↑ Quinn, Catherine; Toms, Gill; Rippon, Isla; Nelis, Sharon M.; Henderson, Catherine; Morris, Robin G.; Rusted, Jennifer M.; Thom, Jeanette M.; van den Heuvel, Eleanor; Victor, Christina; Clare, Linda (29 June 2022). "Positive experiences in dementia care-giving: findings from the IDEAL programme". Ageing and Society. 44 (5): 1010–1030. doi:10.1017/S0144686X22000526. ISSN 0144-686X.
  10. ↑ Brimblecombe, Nicola; Fernández, José-Luis; Knapp, Martin; Rehill, Amritpal; Wittenberg, Raphael, Wittenberg (2018). "Review of the international evidence on support for unpaid carers". Journal of Long-Term Care: 25–40. doi:10.21953/LSE.FFQ4TXR2NFTF.
  11. ↑ Sabatini, Serena; Martyr, Anthony; Hunt, Anna; Gamble, Laura D.; Matthews, Fiona E.; Thom, Jeanette M.; Jones, Roy W.; Allan, Louise; Knapp, Martin; Quinn, Catherine; Victor, Christina; Pentecost, Claire; Rusted, Jennifer M.; Morris, Robin G.; Clare, Linda (2024-02-19). "Health conditions in spousal caregivers of people with dementia and their relationships with stress, caregiving experiences, and social networks: longitudinal findings from the IDEAL programme". BMC Geriatrics. 24 (1) 171. doi:10.1186/s12877-024-04707-w. ISSN 1471-2318. PMC 10875834. PMID 38373905.
  12. ↑ Liu, Zhu; Heffernan, Catrina; Tan, Jie (10 October 2020). "Caregiver burden: A concept analysis". International Journal of Nursing Sciences. 7 (4): 438–445. doi:10.1016/j.ijnss.2020.07.012. PMC 7644552. PMID 33195757.
  13. 1 2 3 Brimblecombe, Nicola; Fernández, José-Luis; Knapp, Martin; Rehill, Amritpal; Wittenberg, Raphael, Wittenberg (2018). "Review of the international evidence on support for unpaid carers". Journal of Long-Term Care: 25–40. doi:10.21953/LSE.FFQ4TXR2NFTF.
  14. 1 2 Koh, Wei Qi; Roes, Martina; de Vugt, Marjolein; Sezgin, Duygu; Gonçalves-Pereira, Manuel; Müller, Nicole; Diaz, Ana; Casey, Dympna; Ingram, Chantal; Walden, Amy Kate; Thyrian, Jochen René; Neal, David; Comas, Adelina; Hopper, Louise (2025-11-02). "What are the unmet needs in people affected by dementia? A scoping review of reviews". Aging & Mental Health. 29 (11): 1943–1966. doi:10.1080/13607863.2025.2534406. hdl:10362/190061. ISSN 1360-7863. PMID 40696903.
  15. ↑ Yuan, Shuai; Zhang, Fengying; Pu, Lihui; Lv, Juan; Xie, Xiao Feng; Lin, Lin; Qiu, Mengying; Huang, Lei; Jiang, Wenyi; Zhu, Jiayi; Wei, Liqin (2025-06-03). "Social support interventions for caregivers of older adults with dementia: a scoping review". BMJ Open. 15 (6) e095815. doi:10.1136/bmjopen-2024-095815. ISSN 2044-6055. PMC 12142170. PMID 40461148.
  16. ↑ Ko, Eunjung; Wongvibul, Thanchanok; Rose, Karen M.; Jun, Jin (13 July 2023). "The effects of self-guided interventions on stress, burden, and mental health in caregivers of people living with dementia: A systematic review". International Journal of Nursing Studies Advances. 5 100141. doi:10.1016/j.ijnsa.2023.100141. PMC 11080538. PMID 38746574.
  17. 1 2 Brimblecombe, Nicola; Fernández, José-Luis; Knapp, Martin; Rehill, Amritpal; Wittenberg, Raphael, Wittenberg (2018). "Review of the international evidence on support for unpaid carers". Journal of Long-Term Care: 25–40. doi:10.21953/LSE.FFQ4TXR2NFTF.
  18. 1 2 Walter, Erik; Pinquart, Martin (2020-11-23). Heyn, Patricia C (ed.). "How Effective Are Dementia Caregiver Interventions? An Updated Comprehensive Meta-Analysis". The Gerontologist. 60 (8): e609–e619. doi:10.1093/geront/gnz118. ISSN 0016-9013. PMID 33226434.
  19. ↑ Chen, Frank; Hu, Zhiwei; Li, Quan; Zheng, Xuan; Li, Meizhi; Salcher-Konrad, Maximilian; Comas-Herrera, Adelina; Knapp, Martin; Shi, Cheng; The STRiDE consortium (27 February 2025). "Effectiveness of Interventions to Support Carers of People With Dementia in Low- and Middle-Income Countries: A Systematic Review and Meta-Analysis". International Journal of Geriatric Psychiatry. 40 (3) e70054. doi:10.1002/gps.70054. ISSN 0885-6230. PMC 11867927. PMID 40015952.
  20. ↑ AARP & National Alliance for Caregiving (2025). "Caregiving in the US 2025". AARP. doi:10.26419/ppi.00373.001. Retrieved 2025-11-24.
  21. ↑ Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. London, UK: Penguin
  22. ↑ Emslie C, Browne S, MacLeod U, Rozmovits L, Mitchell E, Ziebland S (2009). "'Getting through' not 'going under': A qualitative study of gender and spousal support after diagnosis with colorectal cancer". Social Science & Medicine. 68 (6): 1169–1175. doi:10.1016/j.socscimed.2009.01.004. PMC 2706322. PMID 19195750.
  23. ↑ Brittain KR, Shaw C (2007). "The social consequences of living with and dealing with incontinence: A caregiver's perspective". Social Science & Medicine. 65 (6): 1274–1283. doi:10.1016/j.socscimed.2007.04.002. PMID 17509743.
  24. ↑ Bevans M, Sternberg EM (2012). "Caregiving burden, stress, and health effects among family caregivers of adult cancer patients". JAMA: The Journal of the American Medical Association. 307 (4): 398–403. doi:10.1001/jama.2012.29. PMC 3304539. PMID 22274687.
  25. 1 2 Gillespie A, Murphy J, Place M (2010). "Divergences of perspective between people with aphasia and their family caregivers". Aphasiology. 24 (12): 1559–1575. doi:10.1080/02687038.2010.500810. S2CID 143729609.
  26. ↑ Bar-Tal Y, Barnoy S, Zisser B (2005). "Whose informational needs are considered? A comparison between cancer patients and their spouses' perceptions of their own and their partners' knowledge and informational needs". Social Science & Medicine. 60 (7): 1459–1465. doi:10.1016/j.socscimed.2004.08.003. PMID 15652679.
  27. ↑ Horowitz A, Goodman CR, Reinhardt JP (2004). "Congruence between disabled elders and their primary caregivers". Gerontologist. 44 (4): 532–542. doi:10.1093/geront/44.4.532. PMID 15331810.
  28. ↑ Noble LM, Douglas BC (2004). "What users and relatives want from mental health services". Current Opinion in Psychiatry. 17 (4): 289–296. doi:10.1097/01.yco.0000133832.42167.76. S2CID 72357604.
  29. ↑ Croteau C, Le Dorze G (2006). "Overprotection, 'speaking for', and conversational participation: A study of couples with aphasia". Aphasiology. 20 (2–4): 327–336. doi:10.1080/02687030500475051. S2CID 145215323.
  30. 1 2 3 Moore, Helen; Gillespie, Alex (2014). "The caregiving bind: Concealing the demands of informal care can undermine the caregiving identity". Social Science & Medicine. 116: 102–109. doi:10.1016/j.socscimed.2014.06.038. PMID 24996218.
  31. ↑ Power A (2008). "Caring for independent lives: Geographies of caring for young adults with intellectual disabilities". Social Science & Medicine. 67 (5): 834–843. doi:10.1016/j.socscimed.2008.05.023. PMID 18573581.
  32. 1 2 3 Arno, PS; Levine, C; Memmott, MM (Mar–Apr 1999). "The economic value of informal caregiving" (PDF). Health Affairs. 18 (2): 182–8. doi:10.1377/hlthaff.18.2.182. PMID 10091447. S2CID 44565524. Archived from the original (PDF) on 2019-02-23.

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