Beyond crisis: Enacted sense-making among ethnic minority carers of people with dementia in Australia

Abstract

The ‘family crisis’ narrative is frequently used in dementia studies to explain ethnic minority families’ pathways to health and aged care and why there is delayed dementia diagnoses in ethnic minority communities. Such narratives may obscure the family carers’ agency in negotiating services and managing personal, social and structural burdens in the lead up to diagnosis. To illuminate agency, this article describes ethnic minority families’ pathways to a dementia diagnosis using the concept of sense-making. Three case studies were drawn from 56 video interviews with family carers of older adults with dementia from Chinese, Arab and Indian backgrounds. Interviews were conducted across Australia from February to August 2018, then translated, transcribed and thematically analysed. Findings suggest families did not enter into formal care because of a crisis, instead navigating fragmented systems and conflicting advice to obtain a dementia diagnosis and access to relevant care. This experience was driven by sense-making (a search for plausible explanations) that involved family carers interpreting discrepant cues in changes to the behaviour of the person with dementia over time, managing conflicting (medical) advice about these discrepancies and reinterpreting their relationships with hindsight. The sense-making concept offers a more constructive hermeneutic than the ‘family crisis’ narrative as it illuminates the agency of carers’ in understanding changed behaviours, negotiating services and managing personal, social and structural barriers pre-diagnosis. The concept also demonstrates the need for a multimodal approach to promoting timely diagnosis of dementia in ethnic minority communities through dementia awareness and literacy campaigns as well as initiatives that address structural inequities.

Keywords

dementia diagnosis family crisis ethnic minority sense-making system navigation

Introduction

In this article, we present stories of diagnosis and caregiving from family carers (hereafter carers) of people living with dementia in ethnic minorities in Australia as examples of enacted sense-making. By describing the agency of carers in negotiating services and managing personal, social and structural barriers pre-diagnosis, our aim is to show how carers make sense of discrepant cues in the behaviour of the person with dementia, manage conflicting (medical) advice about these discrepancies and come to understand their changed relationships. We employ the sense-making concept in an effort to identify a different hermeneutic rather than the frequently deployed ‘family crisis’ narrative to explain ethnic minority families’ pathways to and beyond a dementia diagnosis. Before we describe our participants’ experiences, we outline the limits of crisis narratives, the sense-making approach, and our study context.

Limits of crisis

Delays in timely diagnosis of dementia among people from ethnic minorities have been widely noted in the United States, United Kingdom, Australia and Europe (see for example Gray et al., 2009; Lee et al., 2011; Mukadam, Cooper, Basit et al., 2011; Mukadam, Cooper, & Livingston, 2011; Stevnsborg et al., 2016). For example, a recent UK study estimated that despite having a higher incidence of dementia, Black men were less likely to be diagnosed relative to white men (42%–53%) (Pham et al., 2018), and similarly, a Danish register-based study of dementia diagnoses showed significant under-diagnosis in ethnic minority patients (Nielsen et al., 2011).

Delays in diagnosis are attributable to several factors observed in ethnic minority communities and among health and care providers such as poor recognition of early symptoms of dementia (Mukadam, Cooper, Basit et al., 2011; Mukadam, Cooper, & Livingston, 2013), interpreting the changes associated with dementia as normal ageing for which medical intervention is not required (Brijnath, 2014; Mukadam, Cooper, Basit et al., 2011), different cultural understandings of cognition (Baghirathan et al., 2020; Mukadam, Cooper, Basit et al., 2011; Mukadam et al., 2013) and as the dementia progresses, perceiving neuropsychiatric symptoms as signs of ‘madness’ or ‘insanity’ and covering it up (Cooper et al., 2010; Mukadam, Cooper, & Livingston, 2011; Mukadam et al., 2013).

As a result of these factors, people with dementia and their families from ethnic minorities are often described in the literature as at ‘crisis point’ when they present to medical services because they can no longer cope on their own (Cooper et al., 2010; Lee et al., 2011; LoGiudice et al., 2001; Mukadam, Cooper, Basit et al., 2011). Presentation at crisis point is seen as problematic due to the therapeutic interventions available at this stage often being more limited, family decision-making being emotionally fraught and the real possibility of caregivers relinquishing their caring role (Cooper et al., 2010; England, 1995; Mukadam, Cooper, Basit et al., 2011).

However, the ‘crisis’ narrative may also obviate important aspects in the pathway to a dementia diagnosis as it suggests an urgent and generally deteriorating situation when a subject is rendered powerless and external intervention is needed to avoid impending failure (Gilbert, 2019). In dementia care, the ‘crisis’ narrative brings two assumptions: firstly, that the pathway to a diagnosis is linear and progressive, where increasingly disruptive behaviours (associated with dementia) result in a crisis that leads to medical presentation, diagnosis, reinterpretation of prior behaviours as symptoms of dementia and reorientation of relationships as a result of the diagnosis (Brijnath, 2014). Secondly, the transition from point of crisis to diagnosis marks a distinction from care practiced informally by the family to care practiced through a combination of formal and informal resources. At this point, it becomes unsustainable for families to continue caring in isolation, and external support from medical or aged care services becomes a necessity (Cooper et al., 2010; England, 1995; Hinton et al., 2004; Mukadam, Cooper, & Livingston, 2011). Thought of this way, ‘crisis’ takes on revelatory connotations – it is the point at which ‘truth’ is revealed and a rational course of action becomes clear (Gilbert, 2020; Koselleck 2002). Vroomen et al., (2013) performed a literature review of dementia-related crises and developed the following standard definition: ‘[A crisis is] a process where there is a stressor(s) that causes an imbalance requiring an immediate decision which leads to a desired outcome and therefore crisis resolution. If the crisis is not resolved, the cycle continues’ (p. 11). Formal care is thus an assumed ‘homeostatic mechanism’ for restoring balance to family systems (see Kim & Rose, 2014), and failure to seek formal care prolongs the crisis and leads to further deterioration of the situation.

However, recent literature has challenged these assumptions. For example Brossard and Carpentier (2017, pp. 567–568) argue that the practical significance of a dementia diagnosis depends on a number of factors including family preparedness, pre-existing care arrangements, the urgency for medical treatment or aged care services and whether the diagnosis is accepted or denied (Brossard & Carpentier, 2017; Carpentier & Grenier, 2012). Moreover, contrary to an interpretative view of dementia diagnoses triggering a reorganisation of priorities to accommodate care, for many families such reorganisation often predates seeking a diagnosis, which can itself be seen as an act of care (Carpentier et al., 2010; Carpentier & Ducharme, 2005).

Researchers also challenge the notion that formal care can rebalance lives within the family and restore the family to homeostasis, instead documenting the increased stress and time pressure faced by carers attempting to navigate often fragmented and bureaucratic health and aged care services (Funk et al., 2019; Taylor & Quesnel-Vallée, 2017). In other words, pre- and post-diagnostic pathways can exacerbate family disruption, stress and instability. Ethnic minority families have been shown to be especially susceptible to personal, social and structural barriers such as cultural insensitivity (Kosloski et al., 1999; Shanley et al., 2012), low language and health literacy (Haralambous et al., 2018), experiencing discrimination or diminishment from service providers associated with race and/or ethnicity (Baghirathan et al., 2020; Boughtwood et al., 2011) and restrictive migration status (Buch, 2015). What remains unclear is how ethnic minority families grapple with these barriers, the agency they exercise and how they come to make sense of what they are experiencing.

Enacted sense-making

The concept of sense-making originated within organisational studies (Weick, 1995; Weick et al., 2005) and has since been applied to studies of family communication, as a way of observing how families use storytelling to collectively make sense of stressful and life-changing events (Koenig Kellas & Trees, 2012). Sense-making refers to the meaning-making and decision-making that people undertake when their held expectations about the world do not align with what they are experiencing and they do not immediately have the information, material and/or social resources to plausibly explain them (Weick et al., 2005). In these situations, people’s identities are challenged by unfamiliar and uncertain events that make it difficult or impossible to relate to others as they had been accustomed to (Weick et al., 2005). By generating narratives, people give meaning to these situations, reconfigure their identities and find order and coherence in their world (Czarniawska, 2004). Sense-making theorists argue that people find meaning and coherence in their response to challenging events by telling stories, and that telling these stories is both individually and socially therapeutic (Weick et al., 2005; Koenig Kellas & Trees, 2012). Telling stories allows us to rationalise our own past actions and reaffirms our roles or identities to ourselves. They are also keys to managing our social reputation, as personal storytelling involves retrospectively sequencing events in order to make one’s own actions understandable and acceptable to others. The measure of a ‘good story’ is not so much its correspondence with objective events but its ‘plausibility’ and therefore value in facilitating a shared sense of understanding within a family or community (Weick 1995).

Karl Weick (1988) offers a theory of crisis that has key differences to the revelatory mode. For Weick, crisis situations prompt enactment, which begins when people notice ‘discrepant cues’ in their environment that disrupt what is perceived as normal. Discrepant cues are often ignored or denied perhaps because they are seen as insignificant, or conversely, because their implications are too troubling to face. When people do begin to make sense of the discrepancies they have noticed, often because they are forced to by events, action usually precedes understanding of the situation. According to Weick, people ‘understand the problem they face only after they have faced it and only after their actions have become inextricably wound into it’ (1988, p. 306). The full significance of the situation experienced cannot be understood beforehand, and it is only by pursuing action that the implications of discrepant cues are revealed for interpretation. Therefore, in opposition to moments of revelation, crises are confusing and risky situations, which can only be comprehended in retrospect, by piecing events together into a plausible narrative. To produce a narrative means to select events out of the flux of past experience and communicatively re-order them in a way that follows a logical sense of progression and causality (Czarniawska, 2004; Polkinghorne, 1995). However, this selective re-ordering cannot happen simultaneous to the events themselves and is always a subsequent operation (Luhmann, 1995; Weick, 1995). It is the cognitive and communicative work of sense-making - retrospectively ordering events into plausible narratives - that facilitates justification and explanation, not the revelatory potential of crisis as a ‘moment of truth’.

Medical diagnoses generally occur after someone seeks medical help to make sense of cues that are discrepant or discordant with normal experiences of the mind and body (Jutel, 2009). Dementia symptoms tend to be noticed gradually, as an older person’s memory omissions, unusual behaviours and disoriented episodes cumulatively add up over time, prompting a search for medical explanations only when other explanations – such as ‘normal ageing’, retirement or grief – lose their plausibility (Brijnath, 2014; Brossard & Carpentier, 2017). As such, a diagnosis provides a lens through which past events are retrospectively reinterpreted along an illness narrative (Simon, 1999), and ‘dementia’ offers a legitimating explanatory label that confirms interpretation of discrepant cues as illness symptoms (Hall & Sikes, 2016; Karner & Bobbitt-Zeher, 2005). However, the meaning of the label has practical significance only insofar as it makes sense of the particular discrepancies and relational adjustments felt by people with dementia and those in their social networks (Carpentier et al., 2010); meaning that people accept and adopt the diagnostic label largely to the extent that it addresses their problems. Sense-making challenges the idea that diagnosis of an illness like dementia discloses an independent, objective truth about a person. Rather, labels are meaningful insofar as they give order to events and coherence to action (Weick 1995). If someone is diagnosed early and symptoms are not yet producing notable discrepancies to make sense of, aside from prompting concern about the future, the ‘dementia’ label will have a more limited substantive relevance (Brossard & Carpentier, 2017). Moreover, how a person who lives with dementia, or their family carers, makes sense of diagnosis depends on how it affects and is affected by their future actions. For the migrant carers in our study, the experience of dementia was rarely one of being rescued from crisis by the revelation of a diagnosis but rather came as a source of further uncertainty and risk. Carers in our study enacted formal sources of support by proactively seeking out professional help, negotiating conflicting or unsatisfactory advice and drawing on a range of informational and social resources to make sense of their situation and accommodate their lifestyles to meeting the needs of their relatives.

Method

This article presents three case studies, based on interviews with carers, as examples of enacted sense-making. These include a carer’s story each from Chinese, Arab and Indian participant groups. These data are derived from a larger study that used film and digital media to increase awareness of dementia in Chinese, Arab and Indian ethnic minority communities in Australia. The project involved co-producing 15 short films in five languages (Cantonese, Mandarin, Arabic, Hindi and Tamil) across three themes (detection and diagnosis of dementia, navigating care and the caregivers’ journeys). These languages were selected because people born in China and India are the two fastest growing non-English-speaking migrant groups in Australia, while Arabic remains the third most commonly spoken language in Australian homes after English and Mandarin (Australian Bureau of Statistics, 2017).

To capture the lived experience of dementia and its diagnosis among caregivers for people with dementia and service providers, a qualitative phenomenological research design (Groenewald, 2004) was applied. Semi-structured interviews were undertaken with 57 primary carers (17 Arab, 22 Chinese and 18 Indian backgrounds) and 19 service professionals across Australia in Melbourne, Sydney and Perth. To be included in the study, carers had to be either Cantonese-, Mandarin-, Arabic-, Hindi- or Tamil-speaking and have had primary responsibility for a person with dementia for ≥ 1 month in the past 12 months. Service professionals had to have provided a service to a person with dementia from any of the five language groups in the previous 12 months.

Recruitment

To recruit carers, leaflets were distributed among the relevant communities in community spaces (e.g. aged care services, memory clinics and religious centres) and through contacts within social networks, and ads were placed in community newsletters. Recruitment materials invited carers of people with dementia to become participants in a project aimed at ‘raising dementia awareness in CALD communities through the art of film making’. The materials also explained that the project involved carers participating in interviews that were part of co-producing three educational films targeted at raising dementia awareness in their communities. These recruitment materials were translated into the five languages and provided contact details for both the project manager and a bilingual member of the research team. Service providers participated for similar reasons; however, they were recruited purposively and to achieve maximum variation by profession, location and ethnic community being serviced. Providers were identified via websites, directories and snowballing, then directly contacted through email and invited to participate.

Data collection

Interviews were conducted from February to August 2018 by a team of five, including three bilingual workers. All participants provided written informed consent prior to the interview. Fifty-five carers and all service professionals consented to being filmed. The two remaining carers consented to being audio recorded. During interviews, carers were asked to describe how their relative with dementia had changed, how they had observed and responded to these changes, the process and significance of getting a medical diagnosis, changes in their relationship and responsibilities vis-à-vis the person living with dementia, their experiences with health professionals and their use of other forms of support. This order of questioning was designed to elicit a narrative from each carer beginning prior to the appearance of dementia, pivoting on the event of receiving a diagnosis and culminating in the carer reflecting on receiving medical and community help. Carer interviews therefore all followed a similar diachronic process; from before their family member was diagnosed with dementia and moving towards the present. This allowed a common narrative structure to emerge from most of the interviews.

All the interviews were translated and transcribed into English, then pseudonyms were assigned, and identifying details changed. Curtin University Human Resarch Ethics Committee approved the study (Approval ID: HRE2017-0758.)

Analysis

A thematic analysis was completed by the research team in NVivo 11 (QSR International) using a common coding manual. Multiple researchers worked together to establish this coding manual, co-coding all the transcripts independently and then collectively, constantly comparing within the data and to the existing literature. Data and the interpretations were presented to study participants, an expert advisory group and to the respective communities via community consultations; such techniques ensure confidence and rigour in our analysis (Mays & Pope, 1995). The thematic analysis was used to construct three storyboards that became the basis for producing 15 educational films, three in each language (Moving Pictures, 2019). Thematic analysis of the 57 transcripts disclosed a range of common themes, including confusion about dementia as a disease, difficulties learning about and accessing health and aged care services, uncertainty about their roles as a carer, the need to negotiate conflicting medical advice and inconsistent competence and support from healthcare, aged care and community service professionals.

Results

The thematic findings showed that a dementia diagnosis was seldom experienced as a moment when truth was revealed and the situations of carers and people with dementia became clear. We decided to draw on a sense-making perspective after abductive reading (Scheff 1990): shifting between theoretical literature and interview transcripts until a theoretical approach was found that could give a unifying perspective on emergent themes. However, a thematic presentation of findings did not capture how each carer’s interview told a whole story, which was necessary to appreciate how they made sense of their role and actions as they unfolded as a temporal sequence. We therefore developed case studies, as is typical of sense-making literature (Weick 1988, 1995; Koenig Kellas & Trees 2012). We selected three interviews that offered rich and cohesive accounts and contained enough data to be conducive to reformulation into case studies, while also ensuring Arabic, Indian and Chinese participant groups were represented. Then, through a process of narrative analysis (Polkinghorne, 1995, p. 20; Pheonix et al., 2010), the elements of the interviews most essential to telling the carer’s story were extracted, reconstructed and have been presented below.

Susan’s story: Making sense of discrepant cues

Susan (58 years old) has been a primary caregiver for her Arabic-speaking Lebanese mother Nada for seven years. Susan remembers her mother prior to dementia as ‘a very sharp minded woman’ and ‘a very active, social and vibrant person’, who was supportive of her husband and four children, actively involved in her church and Lebanese community groups, and an avid gardener. Nada’s husband had died seven years prior to the interview, and Susan says that after his death, the family started to notice their mother was having difficulties managing everyday tasks. She was eating less, had stopped maintaining the garden, was socially withdrawn and spent more time at home. Initially attributing these cues as signs of Nada’s grief, the family soon became concerned because Nada ‘was not looking after herself properly’, and was ‘living off sandwiches’ rather than the nutritious meals she used to cook for her husband and children. After noticing this, Susan and her sister gradually became more involved in supporting Nada by staying with her some nights and cooking for her, which Nada initially resented.

After spending more time with her mother, Susan noticed Nada was increasingly forgetful and confused during conversations. Nada was fixated on telling stories about her past and disengaged and uninterested in the present. Susan suspected that this was dementia, as Susan’s grandmother and uncle had both developed dementia in later life, and she had visited them in Lebanon. However, the family was uncertain about what to do because their parents had migrated to Australia at a young age, and left the extended family behind. Being migrants and not growing up in the presence of older people requiring care meant that Susan and her siblings did not have a ‘narrative inheritance’ (Alemán & Helfrich, 2010) of first-hand experience and knowledge about dementia and how to care for someone experiencing it. Susan said a lack of experience meant they made many ‘mistakes’ such as correcting and rebuking Nada whenever she said confusing or inaccurate things, causing her distress.

Susan and her family were searching for medical explanations, but Nada’s existing relationship with her general practitioner (GP) presented a barrier. Her mother’s GP was a long-time family friend she had been seeing for 40 years who spoke to her in Arabic. This GP refused to diagnose Nada with dementia and dismissed her symptoms as normal ageing. He would only prescribe paracetamol and refused to provide a referral to a geriatrician. Eventually, Susan organised an appointment for Nada with a different doctor at the same clinic, while her regular GP was not in attendance. The new GP did not speak Arabic, but referred Nada to a geriatrician who diagnosed her with dementia.

The new GP and geriatrician assisted Susan to develop a case management plan and wrote prescriptions for appropriate medication. According to Susan, the diagnosis ‘cleared up a lot of problems’, but as neither new doctor spoke Arabic, Nada was unable to communicate with them unless her family was supporting her. Yet, the medical support gave Susan confidence that she was doing the right thing: ‘they helped us have a better relationship with my mother’. After the diagnosis, Susan says the family stopped treating Nada ‘as a normal person’ and began to adjust their behaviours and their lifestyles to better support her. Reflecting on her current situation, Susan said:

Sometimes I just want to shake her and say, ‘Go back to the person you were five years ago, 10 years ago.’ But that’s not happening. I’ve become the parent and she’s become the child, and that’s about the only way I can describe it.

Tanoj’s story: Managing conflicting interpretations

Tanoj (58 years old) is of Tamil background from India. He said his father Ravi probably began to display symptoms of dementia about six years ago, but they did not know what it was at that time. Tanoj has lived in Australia for 20 years, but his parents remained in India. The family began to notice that Ravi was behaving in ways ‘not like him’, accusing Tanoj’s mother of drinking alcohol and stealing. The first time the family sought medical help for Ravi was after Ravi had a series of seizures, was shaking and had unstable gait. The doctor diagnosed Parkinson’s disease, and prescribed medication to treat it. However, the treatment was ineffective and after the physical symptoms became worse, Ravi went to another doctor who concluded that the symptoms were related to old age.

Meanwhile, Tanoj puts his career and life in Australia on hold and returned to visit his parents in India because of his father’s illness. While there, the family decided that the best thing to do was to bring Ravi to Melbourne so that Tanoj could care for him. Before departing for Melbourne, Ravi visited a psychiatrist in India, who ordered brain scans and diagnosed him with early dementia. The psychiatrist said Ravi had 7–15 years left to live, and prescribed medications to treat the dementia, reduce psychological symptoms and ‘reconnect the neurons’. Tanoj said his father was on a ‘cocktail of drugs’ at that point for simultaneously treating Parkinson’s, dementia and mobility problems. The family only later came to understand that this combination of medications was producing significant side effects, including mood swings and loss of gait.

Once Ravi arrived in Australia, his condition worsened. He was disoriented in his new environment, and his functioning and mobility deteriorated. Tanoj referred to his father’s time in Australia as their ‘failed experiment’. After three months in Melbourne, the family decided that migrating had not helped, and Ravi moved back to India accompanied by Tanoj’s mother. Tanoj said they had explored care options in Australia, but his mother was also ageing and his father had reached a point where he would need two full-time nurses to provide round the clock care. This was prohibitively expensive in Australia but possible in India. The family also concluded that taking Ravi to a residential care facility in Australia would be isolating and culturally alienating as his English had worsened as the dementia progressed. Tanoj said that if his father were to enter residential care, it would need to be in a culturally familiar context where residents and staff are Indian and can speak Tamil, which was not available to them in Melbourne. Upon returning to India, two full-time caregivers were employed for Ravi while Tanoj provided financial support from Australia.

Tanoj says that he and his family lacked education in what dementia was and what kind of care it required. Had they been better informed they could have anticipated the impact dementia would have on Ravi and would have made better decisions about his care. Tanoj also says they were unaware of the risks of polypharmacy. Health professionals offered different interpretations and advice, which for Tanoj corresponded to conflicting ‘frames of reference’. Without any education about dementia and its management, the family found it difficult to navigate conflicting interpretations to determine what was most appropriate for Ravi. Managing the equivocality of medical expertise then became an additional aspect of their sense-making. It was only after the ‘cocktail’ of different medications and the ‘failed experiment’ of migration had significantly worsened Ravi’s condition did it become apparent to Tanoj’s family that paid in-home care in India was the best option.

Guchun’s story: Enacting care after diagnosis

Guchun (43 years old) is a full-time carer for her Mandarin-speaking mother, Chen. She gave up full-time employment three years ago when she became concerned about the changes she was seeing in Chen, who transformed from ‘a very smart and intelligent person’ and ‘a very caring mother’ to being forgetful, not following her typical daily routines and becoming agitated and angry when she forgot things.

Guchun took Chen to see a doctor, who was ‘leaning towards’ a dementia diagnosis, but referred them to a specialist for tests that would confirm the diagnosis. Guchun was not surprised by this because her mother was 80 years old at that time. She had known other older people in their community who had developed dementia in later life and the symptoms were similar. The specialist performed a cognitive assessment, which Guchun’s mother scored highly on, suggesting no sign of dementia. However, Guchun was sceptical of the test result because she was aware of the difficulties that Chen was having in her daily life, which were not captured by the test. Guchun says her mother is ‘in denial’ that she has dementia and requires care, and her mother still insists that there is nothing wrong with her.

Guchun recalls the different reactions from people in her social circles towards Chen’s condition. A neighbour who was a psychologist argued that Chen’s symptoms were due to events in her past, and in particular, repression of experiences she had during the Cultural Revolution in China. The neighbour suggested that if she had been able to access therapy and talk about her experiences earlier, she might not have developed dementia. Guchun says a minority of people are ‘quite ignorant’ about dementia and even cruel, but that her friends and family have been very understanding and helpful to her and Chen. Guchun describes Chen’s dementia as a personal exploration for them both:

I am still feeling my way through the symptoms because she is … everyone is different. Actually, everyone … even if someone in the family has this sickness, but they are completely different person so their sickness will be different.

Guchun argues that it is difficult to make generalisations about how to understand or provide care for dementia because the way symptoms manifest is individual and depends on a person’s personality as well as other factors such as life history and their relationships with others. When communicating with doctors, friends and other people, Guchun says she was confronted with a wide variety of conflicting opinions and advices. She says that the assumptions people made and advice they gave did not necessarily apply to their situation. She feels their relationship should be respected as unique, as it was produced through their own mutual adjustment:

So I would adjust myself a bit to accommodate her and she accommodates me. So we developed this new silent agreement. And a lot of things, the way it is done is completely different. So I learn, we go along, and do things as it comes... But if it does then I will do the same next time. If it doesn’t succeed then I will seek out other ways. That how it is, just exploration.

Chen does not verbally accept that she has dementia and has not received a formal diagnosis. Guchun describes her caring role as a ‘silent agreement’ with her mother, which developed over time through a process of mutual adaption and acceptance.

Discussion

Our argument in this article is that ethnic minority carers’ accounts of obtaining a dementia diagnosis and becoming a carer constitute examples of sense-making. By doing so, we wanted to show how, in their narratives, carers make retrospective sense of how they reacted to discrepant cues in the behaviour of the person with dementia, managed conflicting advice about these discrepancies and adapted their relationships to informal caregiving. We argue that the concept of sense-making offers a more constructive hermeneutic than the ‘family crisis’ narrative typical of much cross-cultural gerontology literature, as it illuminates the agency of carers in understanding changed behaviours, negotiating services and managing personal, social and structural barriers in the lead up to diagnosis. It is also attentive to the retrospective quality of interview data, which is woven together by participants sometimes years after the events they are describing, in this case as part of an educational video project. The concept of sense-making reveals important insights within migrant families’ narratives of dementia care about the role of time in the pathways to diagnosis, trusting relations with providers, the identify transformations that occur and the various barriers that carers must negotiate. We expand on these points below.

Firstly, in contrast to the crisis model, which implies a linear timeline whereby diagnostic truth is revealed upon introduction into formal services, the sense-making approach suggests that the time leading up to and beyond diagnosis is marked by continual uncertainties and risks, where the ‘truth’ of the carer’s situation is what emerges from their action, adaption and negotiation (Weick, 1995). Resonating with previous studies (Brijnath, 2014; Carpentier et al., 2010; Mukadam, Cooper, Basit et al., 2011), we found that disruption of everyday life was what mattered to carers rather than cognition or memory. Following Brossard and Carpentier (2017), we also argue that diagnosis is not a sequenced process comprising recognizing symptoms, seeking a formal diagnosis and subsequently mobilizing care networks, but is instead chaotic, unclear, and may involve dead-ends and further sources of uncertainty and risk. Diagnosis is not a singular event that occurs at crisis but part of a larger care narrative, and while carers are in the midst of seeking a diagnosis it is difficult for them to make sense of what is happening and to identify a path forward. Decisions are fraught, experience gleaned through trial and error, and it is through later telling their story that carers reflect and construct a narrative to make sense of what occurred in their past and orient themselves to their present situation (Karner & Bobbitt-Zeher, 2005). Moreover, instead of a dementia diagnoses triggering a reorganisation of priorities to accommodate care, for many families, this reorganisation has already occurred and the decision to seek diagnosis is itself an act of care (Carpentier et al., 2010; Carpentier & Ducharme, 2005).

Carer’s reflections also reveal the structural barriers they shoulder and explain why they do what they do. Alongside grappling with the experience of dementia, carers in our study also dealt with conflicting medical opinions, social stigma, transnational care, misdiagnosis, iatrogenesis and costs of care. In each of these instances, carers had to assume medical, social and financial agencies by overriding doctors and disagreeing with friends and neighbours. In managing conflicting advice, carers often took on the risk and responsibility for the decisions they made and the pathways they embarked on (Brijnath, 2014). The work of negotiating conflicting ‘frames of reference’ of health and care providers was mediated by seeking out practitioners whom carers deemed trustworthy. Trust here meant that practitioners understood and were sensitive to carers particular circumstances (Carpentier & Grenier, 2012) and how care preferences were organised. This suggests a reciprocal relationship between trust and sense-making: sense-making involves a search for trustworthy sources who can offer both practical and emotional guidance, and trust is established insofar as this guidance can make sense of the family’s particular situation.

In shouldering the moral and practical risks of decision-making, carers recognised that dementia profoundly altered their relationships with their relative and was self-transformative. Homeostasis was never returned, and the disruption created by the dementia meant things would never be the same again. However, the consequences of carers’ decisions were disproportionately shared with the person with dementia, some of whom bore considerable physiological and psychological effects associated with ‘failed experiments’.

A limitation of the research is the absence of the views and experiences of people with dementia concerning the pathways to diagnosis and its effects. However, in ethnic minority population, language and cultural barriers often mean adult children are the key seekers and facilitators of formal care (Kosloski et al., 1999) and act as brokers and language interpreters between their older parents and providers (Boughtwood et al., 2011; Mukadam, Cooper, Basit et al., 2011). As Baldwin (2006) rightly argues, the narratives of carers or professionals tend to get prioritised over the narratives of people with dementia. We acknowledge that this project has not addressed the deprioritisation of the voices of people with dementia and that carers may have underestimated the person with dementia’s capacities (Miller et al., 2019).

Another study limitation is that these data were gathered as a part of multimedia project that recruited participants who wanted to raise dementia awareness and diagnosis rates in their communities. Indeed, most of the participants appear in the project’s films and digital media. Consequently, our data collection methods excluded any ethnic minority carers who do not accept Western medical understandings of dementia, have never sought or received a dementia diagnosis for their relative, are distrusting of health or care services, hold stigmatizing attitudes or are fearful of disclosing their relative’s illness to others in their communities (see Mukadam, Cooper, & Livingston, 2011; Mukadam et al., 2013).

Conclusion

These findings have important policy and practice implications regarding raising awareness of dementia and the importance of a timely diagnosis in ethnic minority communities. By moving beyond the family crisis narrative, our findings demonstrate the need for a multimodal approach to promote timely diagnosis of dementia in ethnic minority communities. Such multimodal approaches need to incorporate culturally specific dementia awareness and literacy campaigns targeted at different ethnic communities and services; address structural factors such as inconsistent professional advice, fragmented health and aged care systems and a lack of culturally appropriate care options; and offer counselling and/or support to help carers transition into their role. As the narratives illustrate, carers have agency, and focusing solely on moments of ‘crisis’ obviates this agency in favour of formal health and care services ‘solving the problem’, a scenario that may never be achieved or even be achievable. Instead, approaching dementia care pathways as ongoing processes of enacted sense-making gives voice to caregivers’ accounts, demonstrates the active roles they take in navigating services, facilitating access to formal health and aged care, negotiating conflicting professional opinions and selectively appropriating advice and support from formal services based on their plausibility and how appropriate they are to their circumstances.

Footnotes

Acknowledgements

The authors thank the study participants, expert advisory group and communities for their time and input into the study. We also acknowledge the bilingual workers Dr Nick Lee, Ms Mariam Yousif and Ms Anu Krishnan and the assistance of Ms Fathima Lafeer and Ms Neha Ahmed in helping to produce the films.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study is supported by funding from the Australian Government under the Department of Health The Dementia and Aged Care Service (DACS) initiative. Professor Adams was funded by an ARC Professorial Future Fellowship (FT140100195) while contributing to this research. The authors confirm that the funding bodies had no involvement in the research.

ORCID iDs

Bianca Brijnath

Andrew Simon Gilbert

Mike Kent

Associate Professor Bianca Brijnath Bianca is the Director Social Gerontology at the National Ageing Research Institute and adjunct at Curtin University. Her disciplinary training is in primary healthcare, public health and medical anthropology and her research expertise is in mental health in primary care and community-based settings. Bianca is author of Unforgotten: Love and the Culture of Dementia Care in India (Berghahn Books, 2014) and is the recent recipient of the 2018 Tall Poppy award in recognition of her research.

Dr Andrew Simon Gilbert Andrew is a research fellow at the National Ageing Research Institute. His research focus is on health services, aged care systems and social policy. He most recently led a study titled Integrated Models of Health, Care and Housing on behalf of the Royal Commission into Aged Care Quality and Safety.

Associate Professor Mike Kent Mike is the Deputy Dean for Graduate Research at Curtin University. His research focus is on people with disabilities and their use of, and access to, information communication technology and the Internet. His articles have appeared in Disability and Society, Disability Studies Quarterly, Digital Culture and Education, The Journal of Online Learning and Teaching and M/C Journal (Media Culture).

Associate Professor Katie Ellis Katie is an associate professor in internet studies and Director of the Centre for Culture and Technology at Curtin University. Her research is located at the intersection of media access and representation. She is the author or editor of 20 books on the topic of disability, the media and popular culture.

Professor Colette Browning Colette currently holds the positions of professor, healthcare in the School of Nursing and Healthcare Professions at Federation University and Research Director at Shenzhen International Institute for Primary Health Care Research, China. She is recognised as a national and international leader in psychology and health with a special focus on healthy ageing.

Dr Dianne Goeman Dianne is a Conjoint Senior Lecturer in the School of Medicine and Public Health at the University of Newcastle and holds adjunct research associate positions at Monash University and the University of Sydney.

Professor Jon Adams Jon Adams is Distinguished Professor of Public Health, ARC Professorial Future Fellow and Director of the Australian Research Centre in Complementary and Integrative Medicine (ARCCIM) at the Faculty of Health at University of Technology, Sydney. He is a world-leading public health and health services researcher focused upon self-care, informal health care and traditional, complementary, integrative and indigenous medicine use and practice.

Dr Josefine Antoniades Josefine is the project manager on Moving Pictures and a research fellow at the National Ageing Research Institute. Her prime research interests include the nexus of culture, mental health and health behaviours, in underserved and vulnerable communities.

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