Encyclopedia of Gerontology and Population Aging

Living Edition
| Editors: Danan Gu, Matthew E. Dupre

Formal and Informal Care

  • Jia Li
  • Yajun SongEmail author
Living reference work entry
DOI: https://doi.org/10.1007/978-3-319-69892-2_847-1

Synonyms

Definition

Formal care for older people usually refers to paid care services provided by a healthcare institution or individual for a person in need. Informal care refers to unpaid care provided by family, close relatives, friends, and neighbors. Both forms of caregiving involve a spectrum of tasks, but informal caregivers seldom receive enough training for these tasks. Formal caregivers are trained in the field, but the depth of their training varies.

Overview

Formal Care

Formal care can be organized into three different categories: (1) home-based care; (2) community-based care (such as daycare centers with trained staff); and (3) residential care in the form of nursing homes. Residential care is the most traditional and predominant type of formal care. While informal home-based caregivers still take the predominant role, some older adults also receive formal home care, which includes assistance in personal care (such as dressing and bathing), homemaking (e.g., laundry and cleaning), and clinical care (e.g., wound care) (Lee et al. 2018).

Nowadays, formal care is usually provided by the government and private enterprises. The government used to be the sole provider of formal care. Over the recent decades, due to a neoliberal shift in social care provision, private sector organizations are increasingly involved in providing formal care. The role of the government in formal care for older adults has been shifting from that of “supplier and provider” to that of “purchaser and regulator.” For instance, in Germany, formal care providers are predominantly private so that the quality can be mostly assured due to the competition, but the prices of services are determined by the government (Campbell et al. 2010).

Deinstitutionalization of formal care for older people is also underway (see “De-institutionalization”). A global trend (evident in nations including Germany, Japan, and the USA) is that the government reallocates more resources to home-based and community-based care from residential care due to the benefits of aging in place and, more importantly, the low cost-efficiency of traditional modes of residential care (see “Aging in place”). Moreover, increased support for home-based formal care can effectively reduce the burden of informal caregivers (Murphy and Turner 2017). Many older adults prefer to receive care at home, which can help them age in place (Campbell et al. 2010). This is even true in Asian countries, where home-based care aligns with traditional values suggesting that it is unfilial to send older adults to residential care (Huang et al. 2012).

However, the privatization, marketization, and deinstitutionalization of formal care face a variety of challenges. For instance, in China, there are inconsistent policies and relatively weak regulatory frameworks for the accreditation and oversight of private-sector care. Currently, Chinese initiatives promoting home-based and community-based services remain largely confined to megacities such as Shanghai. Privatization encounters the greatest difficulties in rural areas due to barriers in the physical environment; in these areas, formal care remains highly centralized and operationalized by the local government (Feng et al. 2012).

Formal care is not universally provided across different countries, and there are differences between regional and municipal services, as well as differences in the quantity and quality of formal care provided. Older people from different countries do not have equal access to formal care. Only 5.6% of the global population of older adults (including residents of Germany, Japan, and Scandinavian countries) have universal rights to long-term formal care, according to the statistics provided by the World Bank in 2015. In these countries, eligibility is determined via an objective need assessment process which is extended equally to everyone. Globally, 48% of older people have no right to any long-term care rights (e.g., residents of Brazil and India), and 46.3% have to be poor to be eligible for long-term care based on the mean-tested approach used in countries such as China, Russia, and the USA (Scheil-Adlung 2015) (see “Long-term care”).

Formal caregivers tend to have more professional experience providing care for older adults. These caregivers include licensed professionals, such as social workers, registered nurses, medical doctors, occupational therapists, physiotherapists, and so forth. In addition, formal care is also provided by unlicensed direct caregivers who received short-term training; these caregivers provide services to older people in institutions such as nursing homes, assisted living facilities, community-based facilities, and private residences (Stone and Harahan 2010). However, the standards for the formal caregivers, especially those frontline workers, vary across countries. For instance, within Europe, Scandinavian countries such as Sweden have the highest professional standards and requirements for formal caregivers. In these countries, the wages and job satisfaction of formal caregivers are higher than those in some other European countries such as the UK, where no professional training is required to become a formal caregiver. In the middle, between these extremes, lie countries such as Germany, where formal caregivers are required to have attained at least secondary school graduation (Murphy and Turner 2017).

Informal Care

Informal care comprises assistance in four main areas: (1) routine activities of daily living (e.g., bathing, toileting, and eating); (2) instrumental activities of daily living (e.g., housework, transportation, and managing finances); (3) companionship and emotional support; and (4) medical and nursing tasks, such as injections and colostomy care (Reinhad et al. 2012).

Although recent years have witnessed an increase in male caregivers, the majority of caregivers are still female. While women tend to take care of emotional needs and daily living activities, men are more likely to provide financial and legal support (Barbabella et al. 2018). According to the hierarchical compensatory model, married older adults turn first to their spouses for primary care, then to their children, relatives, friends, and neighbors (Cantor 1979). In fact, informal caregivers are mainly children and children-in-law. For western families with multiple children, mothers’ preferred caregivers tend to be daughters who share their values and live in close proximity (Pillemer and Suitor 2014). For eastern families with Confucian heritage, sons are still preferred as the primary caregivers of their aging parents (Cong and Silverstein 2012).

Informal caregivers play a vital but often invisible role in welfare systems (Barbabella et al. 2018). In the USA, informal caregivers created an estimated economic value of about $350 billion in 2006 (Gibson and Houser 2007), and approximately 34.2 million adults provided informal care to an adult aged 50 and over in 2014 (National Alliance for Caregiving and AARP 2015). In Europe, informal caregivers greatly outnumbered formal caregivers and created an indirect financial contribution ranging from 40% to 90% of the overall costs of long-term care (Triantafillou et al. 2010). In 2015, Australian informal caregivers were estimated to create a replacement value equivalent to 3.8% of the gross domestic product and 60% of the health and social work industry (Deloitte Access Economics 2015).

This significant economic value indicates the high intensity and long duration of informal caregiving. On average, a US spousal caregiver spends 44.6 h a week providing care (National Alliance for Caregiving and AARP 2015). In Europe, caregivers spend a mean of 46 h a week providing care, and the mean length of caregiving is 60 months (Triantafillou et al. 2010). In the long run, informal caregivers may experience burdens and need various forms of support as they become deprived of time and energy.

Key Research Findings

Existing studies of formal and informal care mostly cover the following areas: (1) factors associated with the usage of formal care; (2) working conditions, job satisfaction, and related psychosocial outcomes of formal caregivers; (3) care-related challenges including health outcomes and work conflicts for informal caregivers; (4) health outcomes and experiences of older adults living in formal care settings; (5) support and services for informal caregivers; and (6) the relationship between formal and informal care and related governmental policies.

Factors Influencing the Usage of Formal Care

Three main factors can influence people’s choice to utilize formal care. Previous studies have examined the different characteristics of older adults receiving formal and informal care. The first of these factors is sociodemographic characteristics: formal care recipients tend to be older and have higher socioeconomic status compared to older adults receiving informal care (Coley et al. 2015). There is an inconsistency regarding whether men or women are more likely to receive formal care (Kuzuya et al. 2010). The second factor is health status and functional limitation. Those who have limitations in daily functional activities and cognitive functioning (Coley et al. 2015) are more likely to depend upon formal care. The third factor is the availability and affordability of formal and informal care. Those who do not have informal care (for instance, “empty nesters” living alone and widowed older adults) are more likely to use formal care (Li et al. 2017). These three categories of factors are in accordance with Andersen’s behavioral model of health services use, which suggests the role of predisposing factors (e.g., sociodemographics), enabling factors (e.g., resources), and need (e.g., illness and mobility level) in influencing people’s choices of health services (Zhu 2015).

Challenges in Formal Care Provision

The industry of formal care for older adults faces various challenges, such as workforce shortage and deficiency in governmental funding (Scheil-Adlung 2015). One of the most frequently discussed challenges is the unsatisfying working conditions of formal caregivers, including high turnover due to low wages, low job satisfaction, and substantial physical and emotional demand (Gao et al. 2017). Care is usually perceived as “feminized, dirty and migrant work” (Huang et al. 2012, p. 198). Women, immigrants, and individuals with low education are more likely to work the care industry, and these characteristics contribute to their low wages despite the high job demand. This is true in western countries, such as the USA and Canada, as well as some high-income nations in Asia such as Singapore, Taiwan, and Hong Kong, where domestic workers play an important role in both informal and formal care. Even caregivers who are professional healthcare workers, such as registered nurses, still experience devaluation by their surrounding society (Huang et al. 2012).

Due to agism in society, senior care settings are not typically regarded as a critical part of the healthcare system. The frontline nurses and direct care workers are neither respected by the public nor by managerial teams, who rarely consider frontline workers’ opinions during decision-making processes. The marketization of formal care also contributes to the low wages of formal caregivers due to competition. The working conditions in private formal care settings tend to be even worse than in public institutions (Murphy and Turner 2017). Another challenge faced by formal care sectors is related to the negative image and reputation of formal care usually portrayed by the media (e.g., abuse of older people) and the misunderstanding that those who seek formal services are lazy or selfish, as care for older adults is viewed more as a family obligation. This stigmatization may exacerbate the unfavorable working conditions of formal caregivers.

Challenges for Informal Caregivers

It is widely acknowledged that caregiving can have negative influence on caregivers’ physical and psychological health. Previous studies indicate that providing informal care may lead to the following health consequences for caregivers: (1) negative changes in lifestyle behaviors, such as sleep problems (Happe 2002), nonachievement of heart-healthy diet, and insufficient physical activity (Mochari-Greenberger and Mosca 2012); (2) physical strain and musculoskeletal discomfort (Darragh et al. 2015); and (3) psychological stress such as depression (Covinsky et al. 2003) (see “Caregivers’ stress”).

Caregivers of higher age, lower socioeconomic status, and less informal support are more likely to have poor health (Pinquart and Sörensen 2007). Compared with non-caregivers, caregivers were found to have worse outcomes with respect to stress, depression, subjective well-being, self-efficacy, and physical health. Though statistically significant, most differences were small to medium. However, large differences were found between non-caregivers and dementia caregivers, the latter of whom had higher stress levels and higher risks for poor health (Pinquart and Sörensen 2003). Compared with children and children-in-law, spouse caregivers also reported higher levels of depression and caregiving burden and worse subjective well-being (Pinquart and Sörensen 2011).

Informal caregivers sometimes feel that they are under house arrest, especially when they live with and take care of a dependent older person. Hence, getting out to work gives caregivers a break from care responsibilities and a chance to rejuvenate. This may explain why, compared to non-caregivers, women older than 50 years were more likely to remain employed when they started providing low-intensity care (King and Pickard 2013). However, both time and energy are finite resources. Each additional effort in caregiving comes at the potential cost of paid work (i.e., employment) and leisure activities (i.e., social life). In the USA, 52.4% of employed caregivers found it difficult to reconcile work and caregiving roles, and 39.8% of non-working caregivers reported that they had left work because of caregiving responsibilities (Longacre et al. 2017). In the long run, women taking care of older adults may have early withdrawal from employment and higher risks of living in poverty (Wakabayashi and Donato 2006) (see “Employment and caregiving”).

Besides work-care conflicts, informal caregivers may also experience care-family conflicts. An adult daughter caregiver may also be a wife and a mother at the same time. These individuals are likely to divide their efforts between taking care of aging parents and providing support to their own children. Families with adolescent children, especially those with fewer socioeconomic resources, may experience heightened strains which could intensify conflicts between the roles of caregiver and mother (Stephens et al. 2001).

Experiences and Health Outcomes of Older People Using Formal Care

Older adults report both negative and positive feelings and health outcomes related to residential care use. Being a resident in nursing homes is usually associated with loss of identity and independency, less time seeing children and friends, and fewer opportunities for social interaction (Riedl et al. 2013). However, positive outcomes of using formal care have also been reported. For instance, Lee et al. (2018) found that due to more opportunities for social interaction within formal care settings, Canadian older adults receiving formal care report a higher level of life satisfaction and a lower level of loneliness compared to their peers receiving solely informal home care or a blend of the two. Morris et al. (2019) reported the effectiveness of a formal home care program in promoting older adults’ functional recovery. Whether the experience of using formal care is positive or negative may be influenced by a number of factors, such as older adults’ preference to receive home-based formal care instead of institutionalization and the quality and professionalism of care providers.

Support and Services for Informal Caregivers

There are four main kinds of support and services for informal caregivers: (1) formal support, such as respite and paid care leaves; (2) intervention at the individual level, such as psychoeducational programs; (3) group support; and (4) integrated services. On average, support and services had significant but small effects on caregivers’ well-being (Pinquart and Sörensen 2006). Respite services help reduce depression, caregiving burden, and anger (Lopez-Hartmann et al. 2012) (see “Effectiveness of respite care for caregivers”). Australian caregivers may receive a Carer Allowance if they give extra care to frail older people and meet eligibility requirements. In China, adult children in certain provinces (e.g., Henan) get 20 days’ paid leave to care for older adults. Interventions at the individual level aim at improving caregivers’ coping ability by teaching strategies to manage care and reduce stress. The last decades have witnessed the benefits of information and communication technology (ICT) for caregivers. ICT provides not only online support for caregivers but also remote telecare for care recipients at home (Topo 2009). Group support increases social support enabling caregivers to share both positive and negative experiences. Support groups for dementia caregivers had higher effects when they were designed with theoretical models, were composed of 6–10 members, lasted longer with follow-ups, and had interdisciplinary leaders (Chien et al. 2011). Integrated services, or multicomponent interventions, refer to the combination of all the above support and services. Integrated services are the only effective intervention for delaying dementia patients’ institutionalization (Pinquart and Sörensen 2006) (see “Integrated care”).

Integrating Formal and Informal Care

There are two models used to describe the relationship between formal and informal care: (1) a complementary task-specific model, referring to formal care providing services beyond informal caregiver’s expertise and capability, and (2) a supplementary or substitutional model, where formal and informal care provide similar services and thus are replaceable (Rogero-García and Rosenberg 2011). The aging population worldwide has been rising, and the family structure has been evolving at the same time. Informal care may not be able to meet the growing care needs for older adults, and formal care will be in greater demand (Li et al. 2017) (see “Self, informal, and formal care: The interface”).

Both substitutive and complementary models of the relationship between formal and informal care have received popular support, but the substitutive model has relatively less evidence to support its effectiveness (Garcia et al. 2008). For the complementary model, previous studies in countries such as the USA, Germany, and the Netherlands show that older adults prefer informal caregivers to take care of short-term needs, household tasks, and emotional support, but they prefer formal care for their long-term needs. In line with the substitutive model, Garcia et al. (2008) found that informal care can substitute for some functions of health professionals; for example, after controlling for health status and other sociodemographics, those with informal care have a significantly lower frequency of doctor visits.

Government policies influence the model of care provision. Following the trend of neoliberalism, governments have recently begun to encourage individuals and families to seek informal care for older adults using their own networks, thereby departing from the traditional universal welfare state model of care provision. While formal care has become increasingly marketized, some governments still provide subsidies to caregivers using a strict mean test approach (Murphy and Turner 2017). There are two ways to provide support for informal caregivers: monetary allowances and direct provision of services such as respite care, home modification, and visiting nurses. In Germany, most informal caregivers use a cash allowance, but in Japan, most prefer direct provision of services (Campbell et al. 2010).

Future Directions of Research

Future research should further examine the factors at different levels influencing the provision and intersection of both informal and formal care. The factors influencing the job exhaustion and satisfaction of formal caregivers need to be further investigated at intrapersonal, interpersonal, and organizational levels. These factors should also be examined in relation to social policies, such as employment policies advocating for more female labor participation, delayed retirement, and benefits for informal caregivers (Murphy and Turner 2017). Solutions to tackle the barriers in collaboration between informal and formal care for older adults need to be addressed in future studies. For example, informal caregivers should be delivered more knowledge about formal care, including residential care (which is the most well-known type) as well as other types of home-based and community-based formal care. Future studies should also examine the effectiveness of and provide evidence for more comprehensive and efficient care systems in comparison to the traditional segmented, inefficient, and costly approach (Campbell et al. 2010).

Summary

Care for older adults has gone through a process of marketization, privatization, and deinstitutionalization. Utilization of formal care is related to factors at multiple levels and can both complement and substitute for informal care. However, no matter how challenging care can be, informal caregivers are unlikely to give up their care responsibilities even when their care recipients have moved to institutions. On one hand, more professional training should be offered to formal caregivers. On the other hand, informal caregivers could benefit from more government support. A comprehensive model of integrating informal and formal care should be explored and implemented to better address the emerging caregiving burden.

Cross-References

References

  1. Barbabella F, Poli A, Santini S et al (2018) The role of informal caregivers in long-term care for older people. In: Boll T, Ferring D, Valsiner J (eds) Cultures of care in aging. Information Age Publishing, Charlotte, pp 193–212Google Scholar
  2. Campbell JC, Ikegami N, Gibson MJ (2010) Lessons from public long-term care insurance in Germany and Japan. Health Aff 29(1):87–95CrossRefGoogle Scholar
  3. Cantor MH (1979) Neighbors and friends: an overlooked resource in the informal support system. Res Aging 1(4):434–463CrossRefGoogle Scholar
  4. Chien LY, Chu H, Guo JL et al (2011) Caregiver support groups in patients with dementia: a meta-analysis. Int J Ger Psy 26(10):1089–1098CrossRefGoogle Scholar
  5. Coley N, Gallini A, Gares V et al (2015) A longitudinal study of transitions between informal and formal care in Alzheimer disease using multistate models in the European ICTUS cohort. J Am Med Dir Assoc 16(12):1104–11e1CrossRefGoogle Scholar
  6. Cong Z, Silverstein M (2012) Parents' preferred care-givers in rural China: gender, migration and intergenerational exchanges. Ageing Soc 34(05):727–752CrossRefGoogle Scholar
  7. Covinsky KE, Newcomer R, Fox P et al (2003) Patient and caregiver characteristics associated with depression in caregivers of patients with dementia. J Gen Int Med 18(12):1006–1014CrossRefGoogle Scholar
  8. Darragh AR, Sommerich CM, Lavender SA et al (2015) Musculoskeletal discomfort, physical demand, and caregiving activities in informal caregivers. J Appl Gerontol 34(6):734–760CrossRefGoogle Scholar
  9. Deloitte Access Economics (2015) The economic value of informal care in Australia in 2015. Carers Australia, CanberraGoogle Scholar
  10. Feng Z, Liu C, Guan X et al (2012) China’s rapidly aging population creates policy challenges in shaping a viable long-term care system. Health Aff 31(12):2764–2773CrossRefGoogle Scholar
  11. Gao F, Newcombe P, Tilse C et al (2017) Challenge-related stress and felt challenge: predictors of turnover and psychological health in aged care nurses. Collegian 24(4):361–369CrossRefGoogle Scholar
  12. Garcia JR, Prieto-Flores ME, Rosenberg MW (2008) Health services use by older people with disabilities in Spain: do formal and informal care matter? Ageing Soc 28(7):959–978CrossRefGoogle Scholar
  13. Gibson M, Houser A (2007) Valuing the invaluable: a new look at the economic value of family caregiving. AARP Public Policy Institute, Washington, DCGoogle Scholar
  14. Happe S (2002) The association between caregiver burden and sleep disturbances in partners of patients with Parkinson’s disease. Age Ageing 31(5):349–354CrossRefGoogle Scholar
  15. Huang S, Yeoh BS, Toyota M (2012) Caring for the elderly: the embodied labour of migrant care workers in Singapore. Global Netw 12(2):195–215CrossRefGoogle Scholar
  16. King D, Pickard L (2013) When is a carer’s employment at risk? Longitudinal analysis of unpaid care and employment in midlife in England. Health Soc Care Community 21(3):303–314CrossRefGoogle Scholar
  17. Kuzuya M, Hasegawa J, Enoki H et al (2010) Gender difference characteristics in the sociodemographic background of care recipients. Nihon Ronen Igakkai zasshi/Jpn J Geriatr 47(5):461–467CrossRefGoogle Scholar
  18. Lee Y, Barken R, Gonzales E (2018) Utilization of formal and informal home care: how do older Canadians’ experiences vary by care arrangements?. J Appl Gerontol 0733464817750274Google Scholar
  19. Li F, Fang X, Gao J et al (2017) Determinants of formal care use and expenses among in-home elderly in Jing’an district, Shanghai, China. PLoS One 12(4):e0176548CrossRefGoogle Scholar
  20. Longacre ML, Valdmanis VG, Handorf EA et al (2017) Work impact and emotional stress among informal caregivers for older adults. J Gerontol Ser B Psychol Sci Soc Sci 72(3):522–531Google Scholar
  21. Lopez-Hartmann M, Wens J, Verhoeven V et al (2012) The effect of caregiver support interventions for informal caregivers of community-dwelling frail elderly: a systematic review. Int J Integr Care 12(10):e133Google Scholar
  22. Mochari-Greenberger H, Mosca L (2012) Caregiver burden and nonachievement of healthy lifestyle behaviors among family caregivers of cardiovascular disease patients. Am J Health Promot 27(2):84–89CrossRefGoogle Scholar
  23. Morris JN, Berg K, Howard EP et al (2019) Functional recovery within a formal home care program. J Am Med Dir Assoc. (in press) 30:1–6Google Scholar
  24. Murphy C, Turner T (2017) Formal and informal long term care work: policy conflict in a liberal welfare state. Int J Sociol Soc Policy 37(3/4):134–147CrossRefGoogle Scholar
  25. National Alliance for Caregiving, AARP (2015) Caregiving in the U.S. AARP, Washington, DCGoogle Scholar
  26. Pillemer K, Suitor JJ (2014) Who provides care? A prospective study of caregiving among adult siblings. The Gerontologist 54(4):589–598CrossRefGoogle Scholar
  27. Pinquart M, Sörensen S (2003) Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychol Aging 18(2):250–267CrossRefGoogle Scholar
  28. Pinquart M, Sörensen S (2006) Helping caregivers of persons with dementia: which interventions work and how large are their effects? Int Psychogeriatr 18(4):577–595CrossRefGoogle Scholar
  29. Pinquart M, Sörensen S (2007) Correlates of physical health of informal caregivers: a meta-analysis. J Gerontol Ser B Psychol Sci Soc Sci 62(2):126–137CrossRefGoogle Scholar
  30. Pinquart M, Sörensen S (2011) Spouses, adult children, and children-in-law as caregivers of older adults: a meta-analytic comparison. Psychol Aging 26(1):1–14CrossRefGoogle Scholar
  31. Reinhad S, Levine C, Samis S (2012) Home along: family caregivers providing complex chronic care. AARP Public Policy Institute, Washington, D.CGoogle Scholar
  32. Riedl M, Mantovan F, Them C (2013) Being a nursing home resident: a challenge to one's identity. Nursing Res Pract 2013:1–9CrossRefGoogle Scholar
  33. Rogero-García J, Rosenberg MW (2011) Paid and unpaid support received by co-resident informal caregivers attending to community-dwelling older adults in Spain. Eur JAgeing 8(2):95–107CrossRefGoogle Scholar
  34. Scheil-Adlung X (2015) Long-term care protection for older persons: a review of coverage deficits in 46 countries. ILO, GenevaGoogle Scholar
  35. Stephens MAP, Townsend AL, Martire LM et al (2001) Balancing parent care with other roles: Interrole conflict of adult daughter caregivers. J Gerontol Ser B Psychol Sci Soc Sci 56(1):24–34CrossRefGoogle Scholar
  36. Stone R, Harahan MF (2010) Improving the long-term care workforce serving older adults. Health Aff 29(1):109–115CrossRefGoogle Scholar
  37. Topo P (2009) Technology studies to meet the needs of people with dementia and their caregivers: a literature review. J Appl Gerontol 28(1):5–37CrossRefGoogle Scholar
  38. Triantafillou J, Naiditch M, Repkova K et al (2010) Informal care in the long-term care system. Interlinks, Athens/ViennaGoogle Scholar
  39. Wakabayashi C, Donato KM (2006) Does caregiving increase poverty among women in later life? Evidence from the health and retirement survey. J Health Soc Beh 47(3):258–274CrossRefGoogle Scholar
  40. Zhu H (2015) Unmet needs in long-term care and their associated factors among the oldest old in China. BMC Geriatr 15(1):46–56CrossRefGoogle Scholar

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  1. 1.Department of Applied Social SciencesThe Hong Kong Polytechnic UniversityHong KongChina
  2. 2.Department of Social WorkEast China University of Science and TechnologyShanghaiChina

Section editors and affiliations

  • Xue Bai
    • 1
  1. 1.Department of Applied Social SciencesThe Hong Kong Polytechnic UniversityHong KongChina