Introduction
In all their diversity, health-care systems can be seen as an ‘expression of, and to some extent a miniature model of, the values and social structure of the society from which it arises’ (Helman Reference Helman2007: 96). As Kleinman asserts, a health-care system ‘is both the result of and the condition for the way people react to sickness in local social and cultural settings, and for how they perceive, label, explain, and treat sickness’ (Reference Kleinman1981: 26). However, in a time of transnational migration, when people and health-beliefs are perpetually on the move, new and complex questions are rising to the fore regarding the determinants of people's health and health-care practices. In this article, we explore one such increasingly pertinent question: What is the role of imported, culturally defined systems of cure and care in shaping response processes surrounding signs and symptoms of dementia among immigrants resettling in societies permeated by a health-care culture distinctly different from their own?
The scheme of social policies developed in Norway since the conclusion of the Second World War can be described as an institutional model of redistribution (e.g. Esping-Andersen Reference Esping-Andersen1990; Titmuss Reference Titmuss1974). This implies that an extensive array of public services is available to everyone as an entitlement of citizenship (Norwegian Ministry of Health and Care Services 2011). Within this system, getting assessed and diagnosed for potential medical conditions appears as a public right, which serves the ‘administrative purpose’ of qualifying individuals for health and care services (Jutel Reference Jutel2009: 1). Within this welfare context, dementia is frequently identified as one of the most formidable challenges to the public health-care system, highlighted by the fact that the number of registered dementia cases is estimated to increase sharply over the next decades, from around 66,000 at present, to a doubling towards 2040 (Norwegian Ministry of Health and Care Services 2007: 12–13). Currently, about half of all Norwegians with dementia live at home, often aided by home-care and nursing services. The remainder constitute 80 per cent of all nursing home residents nationwide, although dementia is not always the initial reason for admittance or placement (Norwegian Ministry of Health and Care Services 2007: 9). While it is frequently presumed that an ageing immigrant population will exacerbate the dementia challenge on several levels, particularly in the care sector (e.g. Ingebretsen Reference Ingebretsen2010; Nergård 2009; Norwegian Ministry of Health and Care Services 2013), there is still a dearth of research accounting for the influence of social and cultural determinants in shaping immigrants' perceptions of and responses towards ‘dementia’. Hence, as yet it cannot be straightforwardly presumed that the estimated threefold increase in Norwegian-Pakistanis over 65 years over the next decade will translate to a demand for dementia assessments and public care services mirroring the healthcare-seeking behaviour of ethnic Norwegians (Statistics Norway 2013).
Drawing empirical attention to the social and cultural sides of cognitive decline among Norwegian-Pakistanis – the largest non-Western immigrant group in Norway – this article is a first step towards an anthropology of dementia and migration in the Norwegian welfare context. While the influence of social and cultural contexts in mediating understandings of dementia has tended to be lost behind the individual-centred focus of biomedicine and psychology, it is now well established that these aspects are fundamental in shaping meaning-making and response processes surrounding dementia (e.g. Bond Reference Bond1992; Downs Reference Downs2000; Gubrium Reference Gubrium1986; Harding and Palfry Reference Harding and Palfry1997; Lock Reference Lock2013; Lyman Reference Lyman1989; Whitehouse, Maurer and Ballenger Reference Whitehouse, Maurer and Ballenger2000; Whitehouse et al. Reference Whitehouse, Haines, Lindstrom and Graham2005). ‘Anthropological perspectives may help us to understand how social and cultural processes influence the occurrence and timing of medicalisation of cognitive decline, functional impairment, and behavioural change in older adults who meet criteria for dementia’ (Hinton et al. Reference Hinton, Flores, Franz, Hernandez, Mitteness, Cohen and Leibing2006: 44). In line with this view, we assert that meanings attributed to ‘dementia’ do not necessarily inhere in the phenomenon itself, but develop interactively in various socio-cultural contexts. Considering that about 90 per cent of all Norwegian-Pakistanis trace their background to rural areas in the Punjab province where biomedicine and public health care are negligible (Sayed and Ahlberg Reference Sayed and Ahlberg2006), it follows that many, even after lengthy residence, might find it difficult to relate to the Norwegian health-care culture, especially when contrasting it against their own culturally devised health-care system. With the aim of unwrapping the veil of enigma from the topic of dementia and transnational migration in Norway, we explore the following question: How do Norwegian-Pakistani families ‘negotiate dementia’ betwixt and between their own imported, culturally defined system of cure and care and the Norwegian health-care culture, signified by its inclination towards public elderly care and biomedical intervention?
Health issues can be invoked in a variety of ways in processes of identity formation (Whyte Reference Whyte2009) and, as we assert, in immigrants' identity claims. Inspired by Godelier, who hypothesises that: ‘no society, no identity can survive over time and provide a foundation for the individuals or groups that make up a society if there are no fixed points, realities that are exempted (provisionally but lastingly) from the exchange of gifts or from trade’ (Reference Godelier1999: 8), we argue that this point of relative fixity, which we identify as the traditional family in Norwegian-Pakistanis' identity claims, carries within it significant implications for how dementia is dealt with. Based on ethnographic data, we assert that special efforts to maintain the traditional family and its central features, such as care for the elderly, might lead evolving signs and symptoms of cognitive decline to be seen as indistinguishable from ‘normal ageing’. This might in turn determine when or whether older Norwegian-Pakistanis seek help beyond the family and get referred for specialist dementia assessments.
Minority populations and dementia
Because no studies have yet been conducted on immigrants and dementia disease in Norway, we shall turn to the international scholarly literature in situating our present endeavour. Internationally, there is a burgeoning interest within a variety of academic disciplines for research on dementia and its related disorders in the context of culture and immigrant and minority populations (e.g. Cohen Reference Cohen1995, Reference Cohen2000; Hinton et al. Reference Hinton, Franz, Yeo and Levkoff2005; Purandare et al. Reference Purandare, Luthra, Swarbrick and Burns2007; Yeo and Gallagher-Thompson Reference Yeo and Gallagher-Thompson2006). Attention has been lent to topics such as dementia diagnosis (e.g. Elliott and Di Minno Reference Elliott and Di Minno2006; Hinton, Franz, and Friend Reference Hinton, Franz and Friend2004), dementia care (e.g. Daker-White et al. Reference Daker-White, Beattie, Gilliard and Means2002; Kitwood Reference Kitwood1993; La Fontaine et al. Reference La Fontaine, Ahuja, Bradbury, Phillips and Oyebode2007), and dementia and stigmatisation (e.g. Liu et al. Reference Liu, Hinton, Tran, Hinton and Barker2008; Mackenzie Reference Mackenzie2006). An underlying theme in these and related studies is the influence of socio-cultural components in shaping peoples' patterns of responses and understandings of dementia.
At the outset, we can assert that little universality has been documented regarding the ways that different cultures attribute meaning and respond to ‘dementia’ (Pollitt Reference Pollitt1996). In a study by Henderson and Traphagan (Reference Henderson and Traphagan2005) comparing the construction of dementia among Native American Indians and people in Japan, they found that de-medicalised models of analysis could favourably be adopted to make visible cultural differences decisive of how symptoms were responded to and meaning attributed. Whereas Native Americans understood signs and symptoms of dementia in positive terms, namely as supernatural communication with ‘the other side’, the Japanese perceived the same type of manifestations as signs of frailty and as something that ought to be countered by staying active. Moreover, in an anthropological inquiry on Alzheimer's disease in the Indian city of Varanasi, Uttar Pradesh, Cohen (Reference Cohen2000) identified opposing explanatory models for what dementia was and what caused it, suggesting that definitions of dementia must be seen as culturally relative. He found that altered behaviour and declining cognitive abilities at old age were often defined by endemic concepts with little resemblance to biomedical explanatory models. Rather, cognitive decline in old people was commonly associated with social reasons, such as familial and socio-economic problems. The ‘joint family's’ decline and insufficient familial support, together with conditions of disadvantage, like the caste system and severe poverty, were some of the reasons believed to cause altered behaviour in old people in Varanasi. Considering this diversity, we can presume that many immigrants in Western countries might find it problematic to replace or supplement already-established ways of thinking about health, sickness and the body.
In migratory contexts, care-giving and help-seeking processes are influenced by the meanings that community and family members assign to dementia (Dilworth-Anderson and Gibson Reference Dilworth-Anderson and Gibson2002). In a study on South Asian immigrants in Scotland, for instance, Bowes and Wilkinson (Reference Bowes and Wilkinson2003) found that South Asians differ from the majority population in that they largely handle later stages of dementia at home, have negative perceptions of residential care and make limited use of available health-care service support. Simultaneously, South Asians share some of the same difficulties as the Scottish, such as care-giver stress, social isolation, problematic diagnostic practices and limited knowledge about dementia. Moreover, Purandare et al. (Reference Purandare, Luthra, Swarbrick and Burns2007) found in a study on dementia knowledge among older Indian immigrants in Manchester that insufficient knowledge about various aspects of dementia could explain their comparative absence in local dementia clinics. Similarly, in a literature review of American and Australian studies, Cooper et al. (Reference Cooper, Alec, Thana and Livingston2010) found that minority groups access diagnostic services at a later stage and are less likely to make use of care services compared to the majority population. This tendency could perhaps be explained by reference to another review of studies from the United States of America (USA) (Daker-White et al. 2002), showing that ethnic minorities tend to seldom identify symptoms of dementia due to a lack of familiarity with biomedical explanatory models.
Several studies suggest that education and acculturation are strong predictors of immigrants' understandings of dementia. In a study inquiring about dementia awareness among 675 elderly Korean-Americans, for instance, Jang, Kim and Chiriboga (Reference Jang, Kim and Chiriboga2010) found that individuals with higher levels of education and acculturation had greater knowledge about dementia and were less likely to normalise its symptoms. These individuals also had greater awareness of related services and were less likely to feel shameful of family members with dementia. Education and acculturation is also central for how other ethnic minorities in the USA understand and deal with dementia. Ayalon and Areán (Reference Ayalon and Areán2004), for example, found that education could explain why Anglo older adults had more accurate biomedical knowledge of dementia than Latinos did, whereas (mis-) conceptions among Asians were associated with how long they had been speaking English actively. In line with findings by Hinton et al. (Reference Hinton, Franz, Yeo and Levkoff2005), these studies suggest many individuals of ethnic minority background are likely to revert to ‘folk medicine’ or a mixture of folk models and biomedical models when explaining cognitive decline in older people.
Several studies also suggest that the attribution of stigma to mental illnesses has a decisive influence in determining when and whether various immigrant groups access diagnostic services (e.g. All-Party Parliamentary Group on Dementia (APPG) 2013; Hinton et al. Reference Hinton, Guo, Hillygus and Levkoff2000; Moriarty, Sharif and Robinson Reference Moriarty, Sharif and Robinson2011). Reluctance to seek biomedical explanations for behavioural and cognitive changes at old age might be particularly strong when a dementia diagnosis is perceived to challenge cultural beliefs about the aetiology of such changes. This is because established aetiologies have often traditionally worked to guard against the attachment of stigma to age-related mental incoherence and unsocial conduct (e.g. Liu et al. Reference Liu, Hinton, Tran, Hinton and Barker2008). In Asian immigrant communities, for instance, where signs and symptoms of dementia are commonly seen as aspects of ‘normal ageing’ (e.g. Liu et al. Reference Liu, Hinton, Tran, Hinton and Barker2008; Mukadam, Cooper and Livingston Reference Mukadam, Cooper and Livingston2011; Purandare et al. Reference Purandare, Luthra, Swarbrick and Burns2007; Seabrooke and Milne Reference Seabrooke and Milne2009), a formal diagnosis might thus be undesirable because it defines otherwise ‘healthy’ persons as mentally ill (La Fontaine et al. Reference La Fontaine, Ahuja, Bradbury, Phillips and Oyebode2007; Mackenzie Reference Mackenzie2006). In this perspective, obtaining a diagnosis might also be avoided because it can potentially taint family reputations and harm the marriage potential of younger individuals (APPG 2013; Moriarty, Sharif and Robinson Reference Moriarty, Sharif and Robinson2011).
Hence, dementia in ethnic minorities can sometimes be hidden, engulfed by imported interpretative frameworks that are reinvigorated as cultural markers, as part of traditional solutions to cure and care challenges, and to avoid the stigma surrounding mental illness. What seems to be common for the different interpretative models for ‘dementia’, whether they pertain to communication with a world beyond, to poverty and familial detachment, biomedicine or to ‘normal ageing’, is that all of them represent versions of ‘normality’, shaped by socio-cultural and structural determinants.
Pakistani immigration and settlement in Norway
To understand how Norwegian-Pakistanis deal with dementia and relate to the public welfare system, something must be said about their migration and resettlement experience. Among the approximately 34,000 Norwegian-Pakistanis currently residing in Norway, 18,440 are immigrants, of whom well over one-third have lived in Norway for more than 25 years, while 15,194 were born in Norway to Pakistani parents (Statistics Norway 2013). The Pakistani first-comers arrived in Norway in the late 1960s, peaking in the early 1970s when labour markets throughout Western Europe were becoming increasingly saturated with foreign labour in the face of a creeping global recession. In Oslo, the arrival of 600 Pakistanis from Denmark and Germany in the spring of 1971, followed by several hundred during the summer, led the newspapers to plaster their front pages with war-like headlines and circulate stories of Pakistani crime and organised slavery (Khan Reference Khan2009). For these pioneering Pakistanis disadvantageous treatment in the housing market, combined with a general lack of social inclusion, led to a renewed focus on their ethnic affinity and subsequently to clustered settlement patterns (Brochmann and Kjeldstadli Reference Brochmann and Kjeldstadli2008). According to Lien (Reference Lien1997), their predominately shared Muslim and Punjabi background, together with a desire to maintain their traditional system of brotherhood and kinship affinity, called biradari, has contributed to the preservation of their Pakistani identity. It should be noted, however, that such ties of affinity do not only pertain to definite kinship relations, but also recognise presumed family ties among Pakistanis from the same localities, thus broadening the circle of unity (Shaw Reference Shaw2000).
The settlement of Pakistanis in Norway, predominately from the town of Kharian and its environs, was made permanent when the men who arrived first began sending for their wives in Pakistan in order to be reunited. Chain migration, family reunifications, remittances, frequent return visits to Pakistan and international marriages, in addition to difficulties with fitting in, led many to build social networks connecting their country of origin and country of settlement, a process which can be referred to as ‘transnationalism’ (Schiller, Basch and Blanc-Szanton Reference Schiller, Basch, Blanc-Szanton, Schiller, Basch and Blanc-Szanton1992: 1). The sustained connection with family members in Pakistan has further motivated many Norwegian-Pakistanis to strive to replicate how life was in Pakistan beyond the public gaze, on the ‘ethnically closed stages’ of the family (Eidheim Reference Eidheim and Barth1969: 48). This is particularly the case for the first generation of Norwegian-Pakistanis, who often regard waged employment to be the man's responsibility, while the women ought to be the keepers of the household. Hence, given the cherishment of familial bonds and traditional practices, it can be difficult, if not morally undesirable, for younger generations to depart straightforwardly from their parents' values and desires.
There are many indications suggesting that Norwegian-Pakistanis, as far as possible, uphold traditional mores that are likely to bear implications for how ‘dementia’ is conceptualised and dealt with, such as familial elderly care. For instance, about 74 per cent of Norwegian-Pakistani men are engaged in formal employment, compared to 34 per cent of Norwegian-Pakistani women (Statistics Norway 2009: 206). About 75 per cent of all Norwegian-Pakistani marriages are entered into with individuals currently living in Pakistan, while about 24 per cent marry within the Norwegian-Pakistani community (Daugstad Reference Daugstad2006). Most of these marriages involve people of the same castes (Lien Reference Lien1997). Upon marriage it is common for women to move in with their husband's family where they might face certain expectations when it comes to the wellbeing of their parents-in-law. In accordance with tradition, 57 per cent of all Norwegian-Pakistanis live in households consisting of more than five people and 25 per cent live in co-generational households (Statistics Norway 2009: 202). Although the second and third generation often identify as both Norwegian and Pakistani, the vibrancy of familial and transnational networks might lead certain types of norms, ideals and behaviour to be promoted on the basis of honour and shame, while social deviance is sanctioned. This is particularly evident when it comes to care for older people, as filial obligations are morally compounded in culturally implicit ‘generational contracts’ (e.g. Izuhara Reference Izuhara2010; Moen Reference Moen2009), which prescribe responsibilities within the family. The practice of providing care for older family members is in this sense ‘imbued with a highly emotive duty’ (d'Argemir Reference d'Argemir, Goddard, Llobeira and Shore1994: 210) and is seen, particularly by older people, as a cultural marker associated with ontological security. Hence, in stereotypical terms, whereas ethnic Norwegians prefer public care for fear of becoming a familial burden (Daatland, Veenstra and Lima Reference Daatland, Veenstra and Lima2009), Norwegian-Pakistanis dread the thought of public care (especially nursing homes) because they fear inadequate support and familial detachment, although many acknowledge that such care might be necessary in light of familial or pragmatic circumstances (Moen Reference Moen2011; Næss and Vabø Reference Næss and Vabø2014).
The differences between Norwegian and Pakistani health-care cultures, combined with sustained transnational ties and difficulties in communicating directly with health institutions and health professionals, might thus tend to orientate immigrants towards imported systems of cure and care. This has been found to be a tendency also among British-Pakistanis (Shaw Reference Shaw2000). Hence, to understand response processes surrounding dementia, it is important to recognise that responses might be shaped in relative detachment from, or in contrast to, the formal health-care apparatus. However, in the following empirical analysis, we shall be wary of contributing to a ‘medicalisation of culture’, because simple categorisations of individuals on the basis of cultural background alone might conceal or subsume the likelihood that individuals are varyingly shaped by migration, transnational ties, education, health beliefs and socio-economic statuses (Lock and Nguyen Reference Lock and Nguyen2010: 8).
Methods and approach
Testing the topic
In Norway, the ethnic background of patients is not recorded alongside medical information. Consequently, no statistics exist on dementia prevalence or health-care utilisation among different immigrant groups. To grapple with this lack, to create a vantage point for further exploration and to test the relevance of the topic at hand, we conducted a pilot study focusing on two diagnostic clinics in Oslo; one is a well-established memory clinic in a major hospital, while the other clinic is located in a smaller hospital in an immigrant-dense area. Here, two interesting observations were made regarding Norwegian-Pakistanis' healthcare-seeking behaviour in relation to signs and symptoms of dementia, namely that few get referred for assessments, and that those who do get referred tend to present with advanced symptoms.
This may be a reflection of the fact that Norwegian-Pakistanis' response processes surrounding the creeping signs of dementia are often shaped in relative detachment from, or in contrast to, the public health-care system and the Norwegian household concept of dementia, which frames dementia as a biomedical condition.
Sample and data collection
During the year-long research period, four families with relatives undergoing diagnosis at the polyclinic were recruited as informants in our exploration of the ‘extra-medical’ sides of dementia. The second author was present during the assessment processes at the hospital polyclinic, and subsequently interviewed the families in their own homes to learn about the influence of social and cultural determinants in shaping response processes surrounding dementia. To deepen our understanding of certain aspects, and to be able to identify with more certainty the crucial determinants behind how dementia is handled, four additional families, all with experiences of caring for older relatives at home, were interviewed about dementia, familial care and their relationship to the Norwegian health-care system. We also raised the topic in focus group discussions at a mosque and at an immigrant organisation, both frequented predominately by Norwegian-Pakistanis, in order to account for differences and ‘collective subjectivities’ (Gobo Reference Gobo, Seale, Gobo, Gubrium and Silverman2006: 413). Interviews were also conducted with Norwegian-Pakistani health-care employees. Altogether, 22 interviewees participated, with a balanced representation of men and women. Informed consent was gained for all interviews, which were conducted in Norwegian using a semi-structured approach in order to keep all avenues open for our informants' stories.
The size of our sample was determined following the principle of ‘theoretical saturation’ (Glaser and Strauss Reference Glaser and Strauss1967). That is, the collection of data, coding and analysis constituted a ‘circular process’, which continued until emerging themes were ‘well defined and explained’ and new interviews did not bring forth new perspectives on the research topic (Corbin and Strauss Reference Corbin and Strauss2008: 145). The theoretical significance of the concepts of ‘normal ageing’ and intergenerational reciprocity was thus demonstrated by their notable presence and correlation in further interviews. While our data reflect a clear tendency in terms of normative ideals, common care practices and ideas about ageing, we do not claim that all Norwegian-Pakistanis share the same perspectives and experiences as our informants.
Data analysis
In analysing our informants' narratives we adopted a thematic narrative analysis approach (e.g. Riessman Reference Riessman2008), whereby we focused on identifying recurring themes and patterns of thought in our empirical data, indicative of how dementia responses and conceptualisations are shaped in the Norwegian migratory context. Pakistani immigrants in Norway can be seen as caught between two distinct ‘master narratives’, two aggregated accounts of past acts and practices that are considered ideal, and which make up a common reference for tradition or culture against which present behaviour is evaluated by one-self or others, both on the level of planning and after the fact (Næss and Vabø Reference Næss and Vabø2014). By identifying recurring features and sub-features in our informants' personal narratives, we make visible how socio-cultural and pragmatic determinants work to shape response processes surrounding ‘dementia’ in a migratory context. Pseudonyms are adopted throughout when extracts from interview transcriptions are provided as illustrations of the findings.
Findings
Dementia as a cultural phenomenon: ‘normal ageing’ and dementia
Neither in Punjabi nor Urdu are there words that directly translate to resemble the biomedical concept of dementia (e.g. Forbat Reference Forbat2003), although Alzheimer's is a familiar concept both in Pakistan and among Norwegian-Pakistanis. As Mehmet, an elderly Norwegian-Pakistani man with firm beliefs, expressed during a focus group discussion about elderly care and dementia at one of the largest mosques in Oslo:
The difference between what we see as just signs of ageing and what you call ‘dementia disease’ is difficult to tell. We discriminate between various types of mental disorders. If a person throws stones on other decent people, or uses an iron bar to hit someone, then we think he is sick. But if he just talks nonsense or has lost his memory, we think it is probably because he is old. Then it's ok and we have to take good care of them and act like usual.
While this does not necessarily mean that all Norwegian-Pakistanis are oblivious to allopathic medicine, there is the question of what the perceived benefits and problems would be with adopting a biomedical understanding of dementia to replace or supplement traditional conceptualisations of and responses to the condition. Salman for instance, a middle-aged Norwegian-Pakistani man, attested to Mehmet's view when asked to convey his perspective on cognitive decline and how he felt it ought to be grappled with:
It is only natural that old people become weird and difficult … My father is like that too, and sometimes his head is not functioning. He forgets that he has eaten, and asks for food. My father also says that his head is not functioning as it used to. We show consideration and respect and are humble towards his behaviour. Perhaps one day myself and my wife will also be forgetful, and if our children do not tolerate us, then who will?
He went on, linking his father's situation to a concern for his own potential future:
The day will come when also we will be shuffling aimlessly around the house, banging the walls and slamming the doors. I hope then that our children will not be so tired of us that they send us off to a nursing home. I have been brought up to put up with behaviour like this. It is natural that people do these kinds of things when they get old.
This type of reasoning, rooted in an imported perspective on illness and a desire to fulfil care-giving norms, could perhaps explain why Norwegian-Pakistanis appear to be relatively absent in the diagnostic clinics in Oslo. As both Mehmet and Salman explained, cognitive decline is often seen as a side-effect of old age and as something which is simply usurped by the family, as long as the cognitive changes can be normatively linked to the ageing body and mind.
Care, regardless of forgetfulness, is in Salman's narrative imbued with an interesting aspect which differs from how ethnic Norwegians think about care in relation to ontological security and wellbeing at old age. Because, when Salman reasons that his children are the only ones he can rely upon and be tolerated by at old age, and when Mehmet sees little difference between what Norwegians call dementia and what he identifies as common attributes of ageing, they simply disregard the option of public care, not necessarily in pragmatic terms, but as a morally coherent alternative. Moreover, when the cognitive changes are subtle and can be regarded as regular, they mentioned no intent to seek biomedical explanations or solutions. Hence, whereas most ethnic Norwegians who get dementia will depend upon receiving some form of public care at some point during what they regard as an illness trajectory, the threshold for seeking public help and biomedical intervention among Norwegian-Pakistanis is in principle higher because of their cherishment of filial piety.
Broadly speaking, Norwegian-Pakistanis can be said to be practising a different type of reciprocity which centres on the family, as far as it is available, whereas Norwegian families to a much greater degree will share care responsibilities with the public sector in accordance with the dual-earner economy, which encourages a symmetrical engagement of both men and women in gainful employment. In this perspective, ethnic Norwegians will desire or need a medical diagnosis in order to qualify for the help they need, whereas Norwegian-Pakistanis ideally do not need it for this purpose. According to our informants, one way that Norwegian-Pakistani families compensate for the principal care-giver's lack of income and the absence of state cash-support for familial care, is by pooling the pensions received by elderly parents into the family economy. All Norwegian citizens, even if they have never had formal employment in Norway, have a right to a standard minimum pension.
Coming back to the case of Salman's father, what would be considered deviance from a biomedical perspective was not something that Salman perceived as a matter of urgency in terms of consulting medical expertise. He actually seemed rather unconcerned with the changing behaviour of his father. Although reading signs and symptoms of dementia as normal ageing is also likely to occur frequently in general populations (e.g. Bradford et al. Reference Bradford, Kunik, Schulz, Williams and Singh2009; Iliffe, Manthorpe and Eden Reference Iliffe, Manthorpe and Eden2003), among Norwegian-Pakistanis, in light of Salman's lack of concern and the relative absence of minority patients in the dementia clinics, it seems to be a more pervasive and less ‘accidental’ kind of normal.
‘Normal ageing’ means ageing without dementia in the minds of ethnic Norwegians, but it can also take place when the person with dementia and his or her social surroundings fail to see, for longer or shorter expanses of time, that someone is being swallowed by ‘an entity distinct from ageing’ (Gubrium Reference Gubrium1986: 201). For Norwegian-Pakistanis, on the other hand, the idea of ‘normal ageing’ embodies a range of mental and behavioural changes in older people, including to a large extent dementia, and the threshold is high for thinking that an underlying disease is something other than plain side-effects of ageing. Akif, Mehmet's son, summarised the ‘master narrative’ during the focus group discussion, stating that:
We don't look at it as a disease, but rather as changes that the family has a duty to take care of.
This way of perceiving dementia, in the midst of an accessible health-care system, sets dementia apart from how more common bodily ailments are dealt with among Norwegian-Pakistanis, something which is largely attributable to their transnational and often inherently Pakistani family lives.
Dementia might for this reason appear as a fairly new and unfamiliar concept for many Norwegian-Pakistanis. Arfan, for instance, a cab-driver in his early sixties who came to Norway over 30 years ago, asserted during an interview at a centre for the elderly that:
I have heard about it here in Norway, but I have not heard about it in Pakistan.
He went on, explaining that:
I don't know anyone who has dementia, but maybe the father of a friend of mine has it. My friend is a super salesman. I believe his father has it … that his head is not functioning as it should. Isn't it something like that? I can call him and ask.
It turned out that his friend's father had Parkinson's disease. In line with Akif, Arfan also hinted at the ‘master narrative’ of intergenerational reciprocity when reflecting upon why he had not heard about any Norwegian-Pakistanis with dementia. He suggested that:
It is probably because Norwegian-Pakistanis think that it is normal that elderly people become quirky and difficult to live with.
For families who view dementia as normal ageing rather than changes in the brain, however, there could be both unforeseen and unmanageable consequences when evolving conditions are not recognised and corresponding treatments and services are not sought (Hinton et al. Reference Hinton, Franz, Yeo and Levkoff2005). This problem appears to be a reality in Norwegian-Pakistani families, where family members, in accordance with the Pakistani care ideology, often ‘automatically’ step in to compensate for a person's growing dependency in old age. In some cases, as we discuss under the subsequent heading, by compensating for the often degenerative and debilitating manifestations of dementia, Norwegian-Pakistanis might see no immediate need for help or biomedical explanations for cognitive changes, as long as the changes fall within the framework of what is viewed as ‘normal ageing’. As Mehmet explained above, it is first when an elderly person's behaviour is externalised in an overly confused, violent or unmanageably abrasive manner that a distinction is made between normal and abnormal.
The biomedical perspective can be difficult to adopt for Norwegian-Pakistanis when it comes to understanding particular changes in older people, especially because it implies turning something which is perceived as normal into something which in their view is not, namely disease. As we mentioned above, a diagnosis might disrupt established conceptions that have protected against the attribution of stigma to cognitive changes in old age (e.g. Liu et al. Reference Liu, Hinton, Tran, Hinton and Barker2008). Even in cases where dementia is identified, and where the family members of the person with dementia are familiar with what a potential diagnosis is based on and what it implies, they might, for lack of treatment possibilities and morally coherent care alternatives, revert to explanations and responses that are more in tune with the ideals and concepts of the immigrant milieu they form part of. This sequence of events was made particularly clear in the case of Zaera, who is a wife and mother of four, and her mother Famida, both of whom were recruited as informants when Famida was undergoing diagnosis at a hospital in an immigrant-dense area of Oslo.
Zaera explained that the family had noticed that her mother, who was living with them in their modestly spaced apartment, had been showing signs of ageing for a long time. According to Zaera, over the past years her mother had become increasingly absent minded and disoriented, and talked ‘nonsense’ while behaving strangely, but nobody felt that this was abnormal for someone who was getting older. It was only when her mother had begun behaving in ways that were disruptive to the family and which broke with how they knew her that Zaera contacted her mother's physician for a special consultation. At the hospital, her mother was diagnosed with vascular dementia, explained with reference to her medical record as a gradual consequence of multiple heart attacks, diabetes, overweight and generally declining health. However, while Zaera was the initiator of her mother's contact with the physician who referred her mother to the specialist level, she was reluctant about fully embracing the biomedical aetiology and diagnosis.
In Zaera's eyes, the diagnosis did not seem to change anything because nothing could be done to help her mother's condition, although she was prescribed additional medications directed at her other health problems and indirectly at her dementia symptoms. The diagnosis certainly did not change her relationship to her mother and her place in the family. This feeling was accentuated when the geriatric specialist in charge of the assessment process proposed that Zaera ought to seriously consider a nursing home placement for her mother out of concern for both herself and the rest of her family in light of Famida's ‘messy behaviour’ and frequent mind-travels to Pakistan. Zaera was infuriated at the insensibly proposed nursing home option, not only because of the stories she had heard about life in institutions and her fears about what relatives, friends and acquaintances would think if they made such a decision, but principally because she could not fathom how nursing home placement could improve her mother's life when the only familiar place for her was the family's apartment. She was puzzled, and said:
What can a nursing home do for her? There is no treatment for her condition … she does not know anyone there … and they don't know her.
However, while Zaera saw little purpose in embracing the diagnosis, what she rejected in the end was not the biomedical aetiology and labelling per se, as the diagnosis later qualified her mother for home-care services, but rather the accompanying suggestion which, although well intended, did not recognise their values and family orientation.
As Zaera explained in a later interview in the family's home, in hindsight the diagnosis itself served well in practical terms as it entitled Famida to be sick and thereby to collect services that relieved the family. However, their encounter with the hospital still felt insulting as little regard was shown for their way of interpreting and responding to signs and symptoms of cognitive decline in older people. After all, Zaera thought, neither her imported normative perspective nor the biomedical understanding differs much in terms of eventual outcomes or solutions. Yet, simultaneously, she emphasised that elderly Norwegian-Pakistanis and their families could benefit from pursuing a biomedical diagnosis in some cases, not only to access services but perhaps also to rule out dementia, to identify treatable conditions with confusable symptoms or to pre-emptively deflate the surprise of future behavioural changes where a diagnosis can be posed with certainty. However, Zaera stressed that their hospital experience would have been more constructive if the diagnosticians and related personnel were more sensible regarding linguistic and cultural issues in encounters with minority patients.
Intergenerational reciprocity and help-seeking beyond the family
Is it the case that Norwegian-Pakistanis consider elderly care, and care for persons with dementia in particular, to be one of these things which cannot be given away – not even to be relieved by the welfare state – but which must be kept as part of the fixed basis of their collective identity? How does familial care-giving contribute to Norwegian-Pakistanis' perceptions of cognitive decline, or dementia, and their related patterns of health care-seeking behaviour? Abid, one of our younger male informants, asserted that:
Within the Norwegian-Pakistani community, there are many young people who feel a strong obligation to uphold the ideal of providing care for our parents, and many are very concerned about the perceptions of the wider Norwegian-Pakistani community. To consider care alternatives for our elderly outside the family feels for many like they are bringing shame on their whole family.
Hence, concerns about what others in the community might think seems to be an irrevocable mechanism which makes it difficult and often undesirable to break with tradition. For doing so could, ultimately, result in a break with one's family and a critical loss of face. Considering that care-giving for elderly family members is both a morally and emotionally imbued practice, which many Norwegian-Pakistani families strive to uphold, it is on the familial level that dementia often plays out.
It is often in familiar human surroundings that signs and symptoms of dementia are first noticed and discussed. For many elderly Norwegian-Pakistani women, but also for men, who spend a lot of their time within the household, the family plays a central role in how and whether signs and symptoms of dementia are recognised. In many ways, it is by looking at how the signs and symptoms are responded to that we can attain an understanding of how they are infused with meaning. For instance, if an elderly woman all of a sudden forgets how to make tea properly or entertain guests, these are signs that are socially and perhaps also individually recognised, but they might trigger a variety of responses. In Zaera's retrospection this was also the kind of thing that made her think that her mother was ageing, but she did not know what to expect because the changes were rather subtle in the beginning. She was more concerned about bodily changes in her mother, such as her bad knees, overweight and heart problems. Among Norwegian-Pakistanis it is common for families to compensate for the elderly person's loss of cognitive function by taking over or assisting in maintaining the social roles of the person in question, rather than to respond by seeking biomedical explanations and solutions. This pattern might be problematic in some instances, not in the sense that dementia can be reversed, but in that a formal diagnosis can qualify care-giving families for physical and mental relief through public home help and care services. It might also unlock information of relevance for understanding and grappling with the changes in familial care contexts (e.g. APPG 2012).
In a sense, we could say that Norwegian-Pakistanis' preference for familial elderly care might subvert help-seeking as an initial response to cognitive changes. Contrasting Norwegian-Pakistanis' preference for familial care responsibilities with ethnic Norwegians' general preference for public care, it follows that Norwegian-Pakistanis' help-seeking tends to be motivated by different conditions. For instance, in the case of Zaera and her elderly mother Famida, it was only when Zaera and the rest of her family found her mother's behaviour unmanageable that intervention was sought. They wanted to find out whether something could be done. At the point of help-seeking, Famida was found to have a vascular dementia that had progressed beyond the point of symptom management. Up until the point of help-seeking, however, the family had made every effort to cope with Famida's changing behaviour. According to Zaera, for a long time nothing seemed to be out of the ordinary, not even the increasing instances of forgetfulness and disorientation. In practice, this normative identification of dementia symptoms as ‘normal ageing’ could be described as a ‘disablement model of dementia’, indicating both the practical and conceptual limits of normality (Iliffe, Manthorpe and Eden Reference Iliffe, Manthorpe and Eden2003). According to this perspective, help-seeking appears as acts triggered by necessity, out of concern for both the person undergoing cognitive and behavioural changes and the person's care-givers. While our data indicate that disablement might be the actual point when many Norwegian-Pakistanis will seek explanations, help and intervention, perhaps it is also at this point that the purpose of a dementia diagnosis appears clearest and most purposeful in practical terms, considering that most Norwegian-Pakistanis nonetheless would be inclined to maintain care-giving responsibilities for elderly relatives.
The role as family care-giver, especially if over a lengthy, unrelieved period, might increase susceptibility to bodily strain and stress-related, chronic disorders. Such situations have often been documented and described in terms of care-givers' stress or burden (e.g. Hunt Reference Hunt2003), particularly as regards dementia care (e.g. Ory et al. Reference Ory, Hoffman, Yee, Tennstedt and Schultz1999). Yet, among Norwegian-Pakistanis, expectations about family support weigh heavily and the traditional care-giver ideology encourages a lenient and accepting attitude to changes associated with ageing. While some form of arrangement is usually found within most families, it is important to recognise that care might not always be readily available in situations of unwillingness, kin dispersal or childlessness (e.g. Shaw Reference Shaw2000, Reference Shaw, Kreager and Shroeder-Butterfill2005; Victor, Martin and Zubair Reference Victor, Martin and Zubair2012). While special circumstances might necessitate care alternatives beyond the family, Norwegian-Pakistanis are generally willing to stretch themselves far in order to keep the family intact. Yet, as the case of Zaera and Famida exemplifies, there comes a point for these families when living with and caring for a person with dementia can become overly strenuous.
At present, Famida needs help around the clock to manage her daily life. The hospital diagnostician's straightforward recommendation for Zaera to apply for a bed in a nursing home for her mother did not resonate well because she was adamant that her mother should continue living with the family despite the strenuousness. This was made possible through the compromise of allowing home-care services to relieve herself, her mother and the rest of the family. Considering that her mother does not know much Norwegian and has lived in a ‘Pakistani context’ her whole life, even when in Norway, the suggestion of nursing home placement immediately triggered worrying thoughts because of the relative absence of culturally sensitive solutions to language deficits, culinary preferences and religious affiliation within the predominately municipally administered institutional arrangements. While public institutions allow individual furnishings and decorations in the residents' rooms, other institutional features are more or less standardised, in part dictated by a medical impetus and in part reflecting Norwegian culture and traditions. Hence, few elderly Norwegian-Pakistanis reside in nursing homes (Nergård Reference Nergård2008) and for the few who do, the settled nature of institutions might require special negotiations if the setting is to allow for the playing out of their Pakistani culture (Moen Reference Moen2011). In the eyes of Norwegian-Pakistanis, as has been similarly documented among Pakistanis and Bangladeshis in Britain (e.g. Victor, Martin and Zubair Reference Victor, Martin and Zubair2012), these conditions, contrasted with familial care, amount to a moral disqualification of institutions as culturally coherent care alternatives.
As the case of Zaera and Famida demonstrates, while many Norwegian-Pakistanis acknowledge that public services might be necessary for some older people in light of familial or pragmatic circumstances, the negative image of public care might thus orient Norwegian-Pakistanis towards culturally defined practices. According to Noor, a female family consular in her early forties who was interviewed about elderly care, Norwegian-Pakistanis' general cherishment of familial care is intertwined with concerns for both family reputation, as ‘it is important to maintain a successful familial façade’, and the perceived wellbeing of elderly dependants. Noor explained that ‘The elderly have to live with someone because it is a big loss to live alone’. She stressed that Norwegian-Pakistanis believe that ‘The elderly have to be given a role that gives them dignity’. Among our informants, the general preference for familial care can thus be seen as an inherently social manifestation of a migrating health-care system, which also influences how signs and symptoms of cognitive decline are conceptualised and responded to.
By insisting on keeping the family intact, Zaera was able to ensure a context of continuity for her mother and the rest of her family, wherein the memories and practices of their place of origin could be enacted and preserved. Zaera's mother, Famida, spent most of her time in Norway indoors and was thus never familiar with the streets of Oslo, but at least in the apartment there was some regularity. According to Zaera, she would be less likely to become socially isolated and lonely in the same way at home as she would in an institution, where routine instrumental tasks are often a main priority. Although instrumental tasks related to the body can be awkward in a family setting, Zaera's perspective was that her mother's place in the family and the family's centrality in her mother's self-identification and emotional needs were essential for her mother's wellbeing. Not only was the language familiar, but, she could also hinge her sense of orientation on that ‘something’ joyful usually happened at certain times, such as when Zaera's children would come home from school at three o'clock. Famida still recognised the grandchildren and, according to Zaera, they always made her smile when they were around. Although caring for Famida at home, while at the same time having small children, restricted the family in terms of having visitors and being able to go out, Zaera would not, for the sake of her own conscience and her awareness of her mother's desires, want it any other way. Three elements seemed to motivate her inclination towards familial care, namely a concern for her mother's wellbeing, a wish to comply with imported cultural norms and her mother's wishes, and awareness that inability or choice not to comply with her own and others' expectations would cause permanent feelings of guilt and shame.
These elements were also underlying the Riaz family's decision to maintain care for two elderly dependants. Abida, who in keeping with the tradition of virilocality lives together with her husband Javid's parents, explained with a glint in her eye that: ‘I have four children, plus two more’. She was referring to her parents-in-law. Javid's father has Alzheimer's and his mother is bedridden. According to Abida: ‘they need help with everything’, but, she went on, ‘they like living with us’. The whole family was involved; Abida and Javid work alternate schedules in order to always be present and the oldest children would step in whenever needed, especially during the night-time when Javid's father is often awake and requiring attention. Javid reasoned that it is normal that personalities alter with age, but that it is still ‘an obligation to take care of one's parents’. While Abida admitted that: ‘It becomes too much sometimes’, she shared his opinion. Overhearing from the kitchen that Javid was talking about dementia and nursing homes, although not warmly, she yelled out that: ‘The whole family loves him. When he yells the whole family comes. He is part of the family’. This case illustrates that care for the elderly is an important family matter which demands both collective efforts and individual sacrifice.
Among Norwegian-Pakistanis neglect of care-giving responsibilities, rather than the burden of the care-giving obligations, is often what elicits negative responses from one's surroundings. For Zaera for instance, taking care of her mother came naturally to her, especially when she thought about her own past and the present upbringing of her four children. By educating the young and modelling her own behaviour, Zaera is an example of how women are entrusted with a central position in maintaining the family and Pakistani identity in a migratory context. In agreement with this assertion, it was the opinion of most of our Norwegian-Pakistani informants that the generational contract of reciprocity constitutes an important cultural marker which ought to be translated into practice, even though care situations might depart with expectations in cases of severe dementia and dependency. In cases where dependency trajectories are less pervasive, however, older dependants are not just recipients of care and attention as they often actively participate in settling household matters and helping out with grandchildren. Although caring for her mother necessitated that Zaera sacrifice her job and some of her flexibility and time with her children, especially before her mother started receiving home-care services, she simultaneously saw her efforts as a way to set an example and mould her children's values. Moreover, she underscored what was hinted at by Mehmet, Akif, Salman, Arfan, Noor, Abid and the Riaz family, namely that ensuring the wellbeing of one's parents is a moral question, and a matter of reciprocating the care that parents give to children throughout their upbringing. By instilling the image of the generational contract in her children through exemplary practice, Zaera was not only practising the ‘master narrative’ of how the ideal family ought to be organised and function, she was also making a prospective investment in her own children to ensure the coverage of her own and her husband's potential care needs. Many Norwegian-Pakistanis are in this way identifying the public care system only as a second option or as a last resort.
Perspectives on care
There seem to be both possible advantages and disadvantages associated with familial care in the context of dementia among Norwegian-Pakistanis. First, allowing persons with dementia to remain in familiar physical and social surroundings can be said to decrease the risk of losing sight of the individuals behind a diagnosis. In the eyes of our Norwegian-Pakistani informants, ‘personhood’, or the ways that social standings or statuses are ascribed to individual beings through social interaction (Kitwood Reference Kitwood1997: 8), is something which might easily drown in public care situations, especially if visitation is somehow inconvenient or if there is a high turnover and a lot of part-time care workers. Family members who share a language, background and experiences might thus be more successful in helping persons with dementia to recover a sense of self through shared references to places and objects imbued with memories.
According to the two geriatric medicine specialists we interviewed, to live in familiar surroundings and being able to recount how things were in Pakistan in their native tongue can be particularly important for the coherence and sense of self of Norwegian-Pakistanis with dementia. On the negative side, familial care can have quite negative outcomes for the internal family dynamism, although not all Norwegian-Pakistanis see it this way because intergenerational solidarity weighs heavily. Individual and familial wellbeing is in this perspective highly intertwined with expectations and evaluations of norm-fulfilment. Nevertheless family care-givers might, in the face of potentially delimited communicative abilities and increasing dependency in older family members, find it challenging to identify and respond to the needs of persons with dementia. Moreover, if symptom progression leads to behaviour that is difficult to manage, this could over time lead to individual and familial strain (e.g. Dura, Stukenberg and Kiecolt-Glaser Reference Dura, Stukenberg and Kiecolt-Glaser1991).
From our empirical data, it seems reasonable to assert that because dementia is viewed as within ‘normal ageing’, there is little focus among Norwegian-Pakistanis on alternative aetiologies. Little concern about dementia as a biomedical condition and limited information about what the health-care apparatus can contribute in terms of support might be a restriction to help-seeking. Among our Norwegian-Pakistani informants, both help-seeking and curiosity as regards biomedical explanations for cognitive changes were reported to be highly influenced by the cultural context in which care responsibilities are defined, as established norms will influence who cares and whether services are considered morally permissible (Dilworth-Anderson and Gibson Reference Dilworth-Anderson and Gibson2002). As we have seen, the Norwegian and Pakistani cultures of care differ in the degree to which care-giving is equated with filial respect and moral obligations. While cultural affiliation and pragmatic circumstances might have an ameliorating effect on the association of care as burdensome, we suggest that when such filial responsibilities are enacted in relation to dementia, whether dementia is culturally recognised or not, then the fulfilment of familial care-giving expectations is likely to appear as challenging also for Norwegian-Pakistanis. According to the majority of our Norwegian-Pakistani informants, the association of care for older people as an Islamic duty with the idea that care for older Muslim immigrants for this reason will be straightforwardly provided by their families has a mythical dimension. Such presumptions subvert the fact that many older immigrants in Norway are without extensive families who can provide care. It also exaggerates the idea that families who do provide care for older relatives do not need and do not accept any form of public assistance. But it is not a myth that Norwegian-Pakistanis, both older and younger, tend to be against nursing homes as a care alternative in principle, although it will likely be a reality for some people without appropriate support networks (Næss and Vabø Reference Næss and Vabø2014).
As Zaera and Famida's case indicates, although Zaera was reluctant about fully embracing a biomedical explanation for her mother's dementia, she did acknowledge that she herself, her mother and the rest of her family could benefit from public services directed at their home. This was evident in that Zaera, after her mother's diagnosis, applied for and received home-care services to help oversee her mother's health and to administer her intake of prescribed medications. In light of familial circumstances, although care was kept within the family, the case of Zaera and her mother shows that some forms of assistance could be rendered both a beneficial and necessary supplement to familial care, from which few Norwegian-Pakistanis are willing to depart.
Conclusion: dementia in migratory contexts
Dementia is a category of degenerative and debilitating diseases which impacts on many older persons across the globe, yet, as our findings show, the way that its signs and symptoms are attributed meaning and responded to is far from universal. In the context of migration, this diversity in aetiologies, conceptualisations and social responses constitutes a complex challenge for health-care providers, policymakers and research communities in many countries with ageing immigrant populations. The main lesson to be drawn from this study is that imported cultural facets and ‘local biologies’ (Lock Reference Lock1993), which inform representations and ideas about the human mind and body, are essential focal points for understanding how signs and symptoms of dementia are conceptualised and responded to in migratory contexts. Moreover, these aspects are also indicative of how immigrants perceive and relate to mainstream health-care ideologies and understandings of dementia in their countries of resettlement.
In this article, focusing on Norwegian-Pakistanis, we have shown that the traditional family, enacted as the chief point of fixity in their identity claims, has a profound influence on how cognitive changes at old age are explained and dealt with. According to the Pakistani ‘master narrative’, care for older people is an exclusively familial responsibility governed by expectations of intergenerational reciprocity. Within this scheme of reciprocity, however, where designated family members often step in to compensate for growing dependency in old age, the cognitive changes associated with dementia might not be recognised and responded to as distinct from ‘normal ageing’. Among Norwegian-Pakistanis, signs of dementia might be notably present, yet simultaneously absent, something which might influence when or whether intervention and public help is sought.
Acknowledgements
We are thankful to the Norwegian Research Council (NFR Project Number 186516: ‘Manoeuvring in Hybrid Health Care Organisations’) for funding the research presented in this article. The data presented herein were collected upon ethical approval from the Norwegian Social Science Data Services (NSD) and the Regional Committees for Medical and Health Research Ethics (REK). We also express our gratitude to our interviewees who generously shared their experiences and knowledge with us.
