Perspectives of Caring for Older Persons: A Scoping Review

Theme 1: Gender skewed care

The findings of caregiving research of the reviewed studies have consistently shown that traditionally women have been the main formal and informal caregivers. Some studies found that women, particularly partners or adult daughters, disproportionately take on a heavier care work burden than men.^11,12,31-34 For example, older parents in need of care are most likely to be looked after by their daughters and not their sons. Evidence suggested that traditionally women are socialized into the care role and internalize the gender norms, which view care roles as women’s work. ¹⁰ Moreover, researchers from Netherlands found that when considering the social role theory, women are viewed by several societies as the providers of much of the care. ¹²

An emergent body of literature in caregiving notes a shift in care dynamics toward men contributing to care and this is beginning to gain scholarly attention. For example, an Australian-based systematic literature review ³⁵ acknowledges that, owing to feminist movements, more women have been able to join the work force, thereby contributing to household incomes. In addition, a report on migration ³⁶ shows that because of migration, for example in Latin America because of harsh economic conditions, women have been forced to search for economic opportunities overseas, leaving behind their husbands with children, and their older parents. Furthermore, a study on the difference between men and women in caregiving ³⁴ found that unlike women who traditionally provide personal care, men tend to offer non-personal and physical support, such as doing the gardens, cleaning the house, or helping with shopping. The study goes further to conclude that unlike men, women are more likely to be expected to provide personal care and spend more time caring.

Finally, in spousal relationships, women are more likely to provide informal care to their male partners. A quantitative study utilizing a survey method that involved 1611 participants (informal spousal caregivers), observed that men usually marry younger wives, and with age being a predictor of aging issues, women are more likely to be able to provide care for their husbands. ¹² Similarly, a European bibliographical review from Spain points out that older persons’ care responsibilities mainly fall on women. ³¹ Research on spousal caregivers found that they rarely receive any support from members of their family, friends, or even formal health care professionals. ³⁷ While the gender skewed caring is a critical issue, it is useful to explore the complexity of the caring phenomena beyond this binary of men versus women.

Theme 2: Socio-economic status

Caregiving differs in many ways for both the caregiver and the care recipient, and more specifically based on their socio-economic status (SES). In relation to care needs, previous studies have shown that people from lower SES have a higher propensity for receiving and giving informal care,^38,39 thus the likelihood of household members from low SES to provide care for their older loved ones is also higher. Older people from a higher SES are less likely to rely on or use informal care provided by family, opting to use their own resources to purchase formal care.^39,40 As a result, their families may provide only minimal, if any, informal care support for them. In addition, unlike higher SES background, older people and their families who are reluctant to accept the concept of informal care, low SES families tend to hold strong caregiving cultural norms that are open to receiving or providing informal care.^38,41 Thus, low SES status may be associated with informal care provision and uptake. Being unable to engage in paid employment owing to caring roles may push them into even lower SES.

Informal care provision is closely correlated with implications on the employment obligations of the caregiver. Some studies found that caregivers with more employment obligations find it hard to find the time to fulfill their care obligations.^14,42 As a result, many caregivers, in particular, women end up giving up fulltime employment, opt for casual employment or reduce their work hours, thus negatively affecting their income and social status.^42,43 Furthermore, research findings suggest that caregivers from low SES background, in comparison with those from higher SES, experience serious financial challenges and lower life satisfaction owing to the caring roles.^14,42,44,45

Overall, research shows that informal care is greatly undervalued both politically and in economic terms, ⁴⁶ although its true economic value and contribution has been shown to be enormous to the Australian economy, for example. A report on the value of informal care in Australia estimated the total replacement cost for informal care in 2020 was $77.9 billion. ⁴⁷

Theme 3: Psychological issues

Recent research has shown that while caregiving may bring positive rewards and satisfying experiences for the caregiver ⁴⁸ it can also be a source of stress and raises some psychological issues.^16,17,49,50 This is exemplified in a qualitative study, involving 112 participants (68 women and 44 men), which examined depression levels among primary caregivers of Ultra-Orthodox Jewish background. ¹⁶ The research demonstrated that being both a carer and a spouse can present as high-risk factors for psychological problems among caregivers. Furthermore, being a caregiver for someone with special home-based care needs often places a high level of care burden on the caregiver. Evidence further discussed that caregivers of older people with complex care needs not only find balancing care responsibilities with work-life-family and other obligations extremely difficult to juggle, ⁵¹ but more importantly, they experience considerable psychological stress and anxiety. ¹⁸

Even though home-based care may have satisfying outcomes for both the caregiver and the care recipient, it has been noted that caregiving often presents double challenges particularly in cases where an older family member may be providing the care. ⁴⁸ In such an instance, the older family caregiver mostly a spouse, could be faced with their own personal aging care issues, but then also be expected to provide care to loved ones. ³⁷ In addition, research shows that lack of opportunity to participate in employment and the resultant loss of income because of caring can be a source of psychological distress for some informal caregivers. ¹⁷ Adding on to these findings, it has been observed that older spousal caregivers are more vulnerable to stress and physical strain from the caring task because of their own frailty and advanced age. ⁵²

The findings of the studies reviewed in this article showed that loneliness in older adults when not properly managed can cause serious psychological issues, physical health problems, or even death in extreme cases. ⁵³ Research evidence found that risk of loneliness increases with age especially for those over 65 years old. ⁵⁴ Loneliness can induce psychological stress-related responses in older people such as depression, anxiety, and low self-esteem ⁵⁵ or other health-related illnesses, such as cardiovascular diseases. ⁵³ Reviewed studies indicated that the main determinants of loneliness are low SES and poor health,^54,56 and not either having or not having a partner. ⁵³ Physical health problems were associated with psychological problems and limited financial resources. ⁵⁷ Loneliness and depressive symptoms act in synergetic ways, diminishing the health and well-being for older adults. ⁵⁴ Furthermore, the problem of loneliness in older people can be ameliorated by helping them to establish quality social relationships and networks. ⁵⁶

The quality of the social networks plays a crucial role in older people’s care experiences of psychological and well-being issues. Findings from the reviewed studies suggest that limited access to one’s social network is closely related to psychological problems and loneliness. ⁵⁸ A longitudinal aging study in the Netherlands surveyed 607 participants, examining the relationship between the types of care networks accessed by older people and their psychological well-being. ⁵⁹ It was observed that there was a higher likelihood of depressive problems in older adults receiving a combination of formal and informal care, as this tends to exacerbate feelings of dependence and a loss of control. Having both access to social networks and quality networks matter in ensuring better coping mechanisms with mental health and psychological well-being. ⁶⁰ Social networks are particularly important because of the person’s limited capacity to participate in recreational or social activities due to infirmity issues. ⁶¹

Theme 4: Cultural issues

Culture plays an important role in the acceptance of informal care and the desire for independent living. The ability of older people to cope with loneliness can be enhanced by maintaining extensive and supportive cultural family networks, as well as having positive marital relations.^53,55,56 The findings from a quantitative survey of 3742 Asian and African migrants living in Germany indicated that, having a supportive partner, coupled with co-residing with their children, tends to protect older people from the risk of loneliness. ⁵⁶ Furthermore, several studies found that migrant families highly value informal support exchange.^17,56 One study found the opposite, postulating that older people especially those from Caucasian, non-migrant and higher SES background may not be willing to receive care from family members as they are reluctant to place a burden on them or owing to relationship issues. ²⁰ Barken’s study further revealed that the educated and economically privileged higher SES migrants prefer receiving formal care where funds permit, or struggle on their own to fill in the gaps left by inadequate funding, to avoid burdening their families with care responsibility. ²⁰

The provision of informal care by family members to their older relative, including ethnic minorities (in developed countries), is underpinned by a sense of honor, virtue, filial piety, and familism.^17,21 In other words, for Africans, Asians, and other traditional societies, caring is a natural progression of family relationship and members of the family feel duty bound to look after their loved ones regardless of the challenges that they may face. A qualitative study conducted interviews with 12 participants who were caregivers for people with dementia and examined the motivation behind people with a migrant background to providing care. ¹⁷ The study reported that participants undertook the caregiving role with a sense of pride and honor, knowing they were caring for their older parents. Similarly, a qualitative study involving 23 male participants in Tokyo, Japan concluded that adult sons are as equally motivated by filial piety to care for their older parents, as are their adult sisters. ⁶² The study warns that adult sons need extra help including support to keep their employment and sustain their well-being. ⁶²

Adult children’s preference and decision to provide care for their older mothers or fathers can be underpinned by cultural values. A quantitative study in the United States that examined adult siblings’ division of labor toward the care of their older parents found that generally adult children commit more hours to caring for their older mothers than they do for their older fathers. ⁶³ Furthermore, adult daughters tend to spend more hours caring for their mothers than they do for their fathers. Similarly, adult sons provide more care to their fathers than they do for their mothers. The study concluded that, overall older mothers, in comparison to older fathers, receive more care from adult children. ⁶³

Theme 5: Elder abuse

Elder abuse can be categorized in 5 forms: physical abuse, psychological abuse, sexual assault, financial exploitation, and neglect. ⁶⁴ From a global perspective, elder abuse can be quite discreet and hidden, particularly when it is perpetrated by close family members. ⁶⁵ For example, an Australian based study posits that at some point in the older person’s life, contentious issues related to wills and family inheritance often arise. ²² The study noted that these issues may arise particularly between protecting a family’s potential inheritance for future generations and preserving assets to pay for older person’s residential care accommodation and health care. Such decisions are often made within the family context and never raised outside the family. ⁶⁶ The outcome of an unresolved conflict in the family could be that the older family member is not cared for adequately or s/he is at risk of abuse.

Traditionally, in the western cultures, wills have been used as vehicles to transfer wealth within the family and across generations. However, such positions are increasingly being challenged and diminished because of the societal shift in cultural, religious norms, and values. In several cases, in the courts of law, family members have challenged the older persons’ decision to donate to charity instead of making a will in favor of the family. ⁶⁷ There are also claims that in cases where the older person makes a will to have their wealth being inherited by a charitable organization rather than family, this has impacted on family relationships, with family caregivers being the most affected psychologically as well as economically, before and after their death. ⁶⁷ Caregiving literature shows that the family caregiver’s mental health state can be a risk factor to elder abuse. ⁶⁸ This suggests that issues of family inheritance need careful planning to avoid possible risk of psychological or economic impact on the family caregiver, which then can lead to heightened risk of elder abuse.

Some studies of elder abuse suggest that poor mental health state, characterized by signs of anxiety, depression, and mood swings of the family caregiver can often place the care recipient at significant risk of physical and verbal abuse.^64,69 In some cases, issues of elder abuse need to be linked to psychological factors, as discussed earlier. For example, a cross-sectional study conducted in Spain, examined the relationship between the likelihood of elder abuse care victim with high dependency needs and the caregiver’s poor psychological mental health. ⁶⁸ The study interviewed 829 participants which included caregivers and care recipients. Findings from the study suggested that caregivers regarding caring to be a burden were highly likely experiencing anxiety and depression, presenting detrimental challenges to their caring roles. ⁶⁸

Globally, major cultural and legal differences exist in the disposal of older people’s estate. For example, in Australia, the law of succession is based on the English common law, which upholds the principle of testamentary freedom in disposing the estate. ⁷⁰ Some research found that tensions often arise within families regarding the decision of negotiating the older person’s entry into residential care in relation to the disposal of their assets. ²² In such cases, moral and cultural values often increase complexity of decision making, often leaving families torn between the decision of how much wealth should be left for intergenerational inheritance and that which goes toward the older person’s care. ²² When this happens, the older person’s autonomy to decision making is eroded owing to reluctance to go against the family’s wishes upon which they rely upon for care.

Furthermore, in diverse and multi-cultural societies such as Australia, New Zealand, and the United States, many overseas born citizens’ cultures may clash with the English common law on succession. ⁷⁰ However, such customary cultural beliefs may not always be acceptable with some children raised in these countries but with parents from Asia or Africa, thereby creating tensions within the family. Research suggests that when tensions from family disputes related to inheritance remain unresolved, it can negatively impact the caregiving support exchange and relationship between older children with their older parents. ⁶⁷

Theme 6: Legal, ethical, and human rights perspectives

In many countries, laws relating to POA play a pivotal role in the management and safeguarding of older people’s property and personal finances. ²³ There are several challenges and limitations in relation to legal matters, respect for older people’s rights and protection from elder abuse. For example, relevant laws often stipulate the POA appointees’ eligibility and exclusion criteria, including specifying undesirable individuals like those previously convicted of criminal offences involving dishonesties, such as fraud, or insolvency and bankruptcy. ⁷¹ Research, however, also warns of the legal deficiencies, pointing out that the legislation alone cannot be enough to eliminate or reduce incidences of elder abuse.

While POA laws are made with good intentions, research suggests that they can often significantly increase vulnerability to exploitation. ⁷¹ For example, POA can be used as a “vehicle to steal” from the older person especially by those entrusted and appointed with the enduring POA. Evidence notes that many older people trust their spouse, partner or family members to act on their behalf and make decisions in their best interest. ⁷² Thus, many older people naturally appoint close family members through the enduring POA. This move may appear logical and natural or even a cultural norm. Unfortunately, some family members who put their hands up to help may be driven by sinister motives such as to steal from their older relative. ⁷² In this context, an unethical person granted enduring POA can be tempted to exploit and prey on the older person’s vulnerability and dependence for their care and support.

Older people have rights, including to privacy and confidentiality, as well as being able to make their own choices like other citizens. ⁷³ As such, in situations where law firms and professionals identify elder abuse issues when working with older people, they first need the consent of the victim to report any such cases to the relevant authorities. Research, however, has shown that lawyers face ethical dilemmas when elder abuse is identified but the older client does not consent to a report being made on the matter. ⁷¹ In such situations, legal practitioners are left in a difficult ethical situation regarding how best to handle such a case by balancing between ensuring protection from harm of the older client and respecting the right to make a choice and maintain autonomy. ⁷¹

Everyone has a right to fair treatment and to make decisions as guaranteed in the Universal Declaration of Human Rights, Article 1 which state that, “All human beings are born free and equal in dignity and rights.” ⁷⁴ Older persons, therefore, need to be protected from elder abuse, but without infringing on their rights to dignity and to make choices about personal care. That is the challenging balance. This review has identified several potential human rights violations affecting older people, including service delivery gaps resulting in unmet care needs. ⁵⁰ To ameliorate the impact of older people’s unmet care needs, there is a need to develop an understanding of the association of care with issues of legal, ethical, and human rights perspectives to better inform home-based care policies and programs.