Persons With a Migration Background Caring for a Family Member With Dementia

Challenges to Shared Care

Menal Ahmad, MSc; Jennifer van den Broeke, PhD; Sawitri Saharso, PhD; Evelien Tonkens, PhD

Disclosures

Gerontologist. 2020;60(2):340-349. 

In This Article

Abstract and Introduction

Abstract

Background and Objectives: By shedding light on the reasons why persons with a migration background (PwM) may take up the role of family caregiver of a person with dementia, and how this relates to gender norms, we aim to elucidate cultural and social dynamics that impede care sharing.

Research Design and Methods: A qualitative study of 12 PwM who provide care, or have recently provided care, for a family member with dementia was conducted through semi-structured interviews. Identified themes and patterns were analyzed with the help of Hochschild's interpretive framework of framing and feeling rules.

Findings: Our findings illuminate how motivations to provide care are framed through two moral framing rules, reciprocal love and filial responsibility, and how these framing rules are accompanied by the feeling rule of moral superiority over non-caregiving family members. We show how shared dementia care is impeded though these moral framing and feeling rules, and how gender norms impact on an unequal distribution of care-tasks.

Implications: Healthcare practitioners should identify the moral dialectics of caregiving. This means that, on the one hand, they should be aware that moral framing rules may pressure women into exclusive caregiving, and that this can lead to health problems in the long term. On the other, healthcare practitioners should recognize that providing care can create a deep sense of pride and moral superiority. Therefore, showing acknowledgement of the caregiver contribution is a crucial step in creating trust between the caregiver and healthcare practitioner. Furthermore, asking for support should be normalized. Governmental advertisements on care–support can achieve this.

Introduction

Providing care exclusively, with little or no formal or informal support, is intensive. In particular, caring for a person with dementia is emotionally and physically demanding (Zwaanswijk, Peeters, van Beek, Meerveld, & Francke, 2013). Dementia encompasses a set of progressive diseases in which cognitive functions (including memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgment) are impaired. This is commonly accompanied by deterioration in emotional control, social behavior, or motivation (World Health Organization [WHO], 2012). Zwaanswijk and coworkers (2013) found that behaviors often associated with dementia such as wandering, repetitive questions, and body maintenance, are related to greater caregiver stress and exhaustion.

Although dementia is not a normal aspect of aging, dementia has a higher prevalence rate among individuals aged 60 and older. Because of the ongoing aging of the world population, the incidence of dementia is therefore expected to increase (WHO, 2012). In the Netherlands, there are higher prevalence rates of dementia in persons with a migration background (PwM1) than among native Dutch. For instance, Parlevliet and coworkers (2016) found that dementia and mild cognitive impairment are three to four times more prevalent in the three largest non-Western groups with a migration background (Turkish, Moroccan, and Surinamese) compared with the native Dutch population.

Despite the higher incidence of dementia in PwM, studies show that PwM make less use of formal support services (Denktaş, Koopmans, Birnie, Foets, & Bonsel, 2009; Van Wezel et al., 2016), and that older PwM rely on family caregivers more often and more intensively than native older Dutch persons (De Graaff & Francke, 2003; de Graaff, Francke, van den Muijsenbergh, & van der Geest, 2010). One of the reasons for this difference is that the current standardized models of care are often not attuned to the needs of PwM (De Graaff & Francke, 2003; De Graaff et al., 2010). Another reason for a limited use of formal support services by PwM is the belief that it is the family and not professional outsiders who should provide care for aging parents. Failure to do so (and the decision to invoke the help of professionals care) is considered dishonorable, and results in feelings of shame (Tonkens, van den Broeke, & Hoijtink, 2008, Tonkens, Verplanke, & de Vries, 2011). Thus, social control, and feelings of honor and shame, may impede the use of home-care services and other forms of professional care (De Graaff & Francke, 2003; Denktaş et al., 2009).

There is an important gender dimension to all this, too. Although usually phrased in gender-neutral terms, it is not any family member who is expected to provide care for relatives with care-needs; it is the task of female family members due to gender norms (De Graaff & Francke, 2003; Tonkens et al., 2008, 2011). With gender norms we are referring to "the socially constructed roles, behaviors, activities, and attributes that a given society considers appropriate for boys and men or girls and women" (American Psychological Association, 2019). Although "caregiving as women's work" is a gender norm that cuts across all cultural groups (Calasanti & Slevin, 2001), in PwM residing in the Netherlands this norm may be stronger than among native Dutch families (Van den Berg, 2014), and it is often accompanied by a practice in which one female family member is expected to provide most of the care exclusively (Van Wezel et al., 2016). This may explain why family caregivers with a migration background show higher percentages of exhaustion (Oudijk et al., 2010).

The higher incidence of dementia in PwM, the underuse of formal support services, as well as the increase of migrant populations in Western societies, has implications for the provision of support services for family caregivers of older PwM. Indeed, social and demographic changes lead to more diverse family contexts and care needs (Roberto & Blieszner, 2015). Yet, PwM are underrepresented within research on dementia care, and aging care in general (Zubair & Norris, 2015). Furthermore, empirical research on (the improvement of) shared dementia care within the context of PwM has been notably absent.

Studies that do focus on PwM caring for a person with dementia emphasize practical interventions, such as the employment of an intermediary for families with a migration background (Goeman, King, & Koch, 2016), or better access to dementia support services (Shanley et al., 2012). Such interventions may in some cases help to ease the burden of family caregivers of persons with dementia. However, they do not address how individual and/or collective identity issues and concomitant emotions inform the division of care-tasks. What is neglected in this focus is the complexity of care decisions, and how these decisions are intertwined with feelings and behaviors that are deemed "appropriate" according to social norms (Hochschild, 1983, 2003).

This article remedies this neglect by shedding light on the ways in which the division of care-tasks is informed by the perceptions and experiences of PwM caring for a family member with dementia. In doing so, we aim to enrich our understandings of: (a) why PwM caring for a family member with dementia take up the role of family caregiver; (b) what may impede care sharing within the family and with health or support services; and (c) how gender norms relate to an unequal distribution of care-tasks. Identifying these concerns, as well as suggesting appropriate ways to respond to these concerns, can help progress counseling and support for PwM caring for a family member with dementia—and open up ways for more gender equality.

Theoretical Perspective

To better understand the social structure and moral complexity of emotions, Hochschild (1983, 2003) developed an interpretive framework to study how people make sense of their emotions and how this relates to their social context. This framework is described in terms of "framing rules" and "feeling rules." Our analysis is rooted in this framework.

Framing rules are "rules governing how it is we see situations" (2003, p. 82). They can be discerned as moral (compared with what is considered morally right), but also pragmatic (compared with what is currently available), or historical (compared with what was right, common or possible before) (2003, p. 116). People use feeling rules, Hochschild argues, to relate to these frames. Feeling rules "define what we imagine we should and shouldn't feel and would like to feel over a range of circumstances; they show how we judge feeling" (2003, p. 82). When we experience feelings, we judge them as appropriate or inappropriate by applying one of the three measures: clinical, moral, and social-situational appropriateness. "Clinical appropriateness refers to what is expectable for 'normal,' 'healthy' persons. Moral appropriateness refers to what is morally legitimate. Social-situational appropriateness refers to what is called for by the norms specific to the situation" (2003, p. 82). Framing rules and feeling rules mutually inform each other, as framing rules "point to the cognitive, meaningful, and interpretive frame within which feeling rules are situated" (Tonkens, 2012, p. 199).

Not surprisingly, framing and feeling rules are gendered because feelings are managed according to the socially constructed framing rules that apply to women and men. For example, women are more likely to be expected to suppress feelings of anger and aggression in the service of "being nice" because of how gender expectations are framed in society (Hochschild, 1983, p. 163). Gender norms that frame certain tasks and behaviors as feminine may be present as an implicit gender subtext (Smith, 1987). Applying Hochschild's concept of framing and feeling rules to the context of our study will offer insights into broader aspects of the caregiving experiences of PwM, and how these experiences are (implicitly) gendered.

1The term person with a migration background was introduced in 2016 in the Netherlands as a replacement for the term allochthonous (originating elsewhere)—the opposite of autochthonous (original inhabitant)—because it was found to be a problematic term (Statistics Netherlands, 2016). PwM is not an ideal term either because it demarcates people on what they are not (e.g. a person with a native Dutch background), and it highlights differences from the majority. Furthermore, although the term PwM is divided into Western and non-Western, in Dutch discourse it commonly refers to persons who are not white. Nonetheless, we adapted this term in our paper because we have yet to come across a term that is more inclusive.

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