Negotiating access to a diagnosis of dementia: Implications for policies in health and social care.

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Article

Negotiating access to a diagnosis of dementia: Implications for policies in health and social care

Dementia 0(0) 1–21 ! The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301214563551 dem.sagepub.com

Sharon Koehn Department of Gerontology, Simon Fraser University, Vancouver, Canada; Providence Health Care, Vancouver, Canada

Melissa Badger Department of Gerontology, Simon Fraser University, Vancouver, Canada

Carole Cohen Sunnybrook Health Sciences Centre, Toronto, Canada

Lynn McCleary Department of Nursing, Brock University, St. Catherines, Canada

Neil Drummond Department of Family Medicine, University of Alberta, Edmonton, Canada

Abstract The ‘Pathways to Diagnosis’ study captured the experience of the prediagnosis period of Alzheimer’s disease and related dementias through indepth interviews with 29 persons with dementia and 34 of their family caregivers across four sites: anglophones in Calgary, francophones in Ottawa, Chinese-Canadians in Greater Vancouver and Indo-Canadians in Toronto. In this cross-site analysis, we use the ‘Candidacy’ framework to comprehensively explore the challenges to securing a diagnosis of dementia in Canada and to develop relevant health and social policy. Candidacy views eligibility for appropriate medical care as a process of joint negotiation between individuals and health services, which can be understood relative to seven dimensions: identification of need, navigation, appearances at services, adjudication by providers, acceptance of/resistance to offers, permeability of services and local conditions. Interviewees experienced challenges relative to each of the seven dimensions and these varied in form and emphasis across the four ethno-linguistic groups.

Corresponding author: Sharon Koehn, Department of Gerontology, Simon Fraser University, Ste 2800, 515 West Hastings St., Vancouver, BC V6B 5K3, Canada. Email: [email protected]

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Keywords health services accessibility, dementia diagnosis, Canada, health policy, Candidacy framework, ethnocultural minority older adults

Despite the increasing incidence and prevalence of the disease, obtaining a diagnosis of dementia remains generally problematic (Werner, Goldstein, Karpas, Chan, & Lai, 2014). In order to explore this transition in the context of vulnerabilities associated with the diverse ethnic, cultural and linguistic backgrounds of older Canadians, we targeted four locations each focusing on one of the main ethno-linguistic groups in the country (Statistics Canada, 2012) and interviewed people with dementia and their caregivers about their experiences of obtaining a diagnosis: Anglo-Canadians in Calgary (n ¼ 13), Francophone Canadians in Ottawa (n ¼ 14), Indo-Canadians in Greater Toronto (n ¼ 15) and Chinese Canadians in Greater Vancouver (n ¼ 21). This paper consolidates the findings from all four centres to explore dimensions of access to health care as conceptualized in the ‘Candidacy’ framework of Dixon Woods et al. (2006). Our goals are to provide a comprehensive understanding of the challenges to securing a diagnosis of dementia, especially among ethnic minority groups, and to consider the consequent policy and practice implications. The Candidacy framework views eligibility for appropriate health care as a process of mutual negotiation between individuals and health services. Persons with dementia (PsWD) and their family carers in our study experienced challenges in negotiating diagnoses which varied in form and emphasis within and across the four ethno-linguistic groups. Here we focus particularly on common challenges.

Study details Data collection To be eligible for our study, PsWD had to be aged 55 years or older; self-identify as belonging to one of our targeted ethno-cultural groups; have received a diagnosis of Alzheimer’s disease, vascular or mixed dementia (referred to as Alzheimer’s disease and related dementias (ADRD)) in the preceding four years; be able to recall pre-diagnostic experiences; be able to provide informed consent to participate; and have a family carer who was in regular contact and consented to participate. We interviewed these patient–carer dyads based on evidence that collection of experiential data from PsWD is possible and contributes to a fuller understanding of the illness progression (Bond & Corner, 2001). We secured 63 in-depth interviews: 29 with PsWD (18 male, 11 female) and 34 with carers (12 male, 22 female) (Figure 1). At each site, recruitment was coordinated and interviews were conducted by a research associate familiar with the target population and fluent in the relevant languages. Recruitment strategies varied by site, reflecting differences in both the target populations and provincespecific configurations of dementia services. PsWD were recruited with the help of dementia and/or ethno-specific agencies and clinics (see Table 1); family carers were identified by the PWD. When more than one person was identified as a primary carer, both were interviewed. Most carers were spouses (n ¼ 23), and the remainder were adult children (n ¼ 8) and/or their spouses (n ¼ 3) (Figure 2). The majority lived with the person with dementia.



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Figure 1. Gender distribution of persons with dementia (PsWD) and carers.

Table 1. Recruitment sources by site. Site

Recruitment sources

Vancouver

Chinese Resource Center of the Alzheimer’s Society of British Columbia (ASBC)a (recently diagnosed Chinese patients who were referred by geriatricians; most were not currently participating in ASBC support groups).

Calgary

Alzheimer Society’s Living with Dementia programmea (education and peer-support for recently diagnosed individuals).

Toronto

A community agency that provides an Adult Day Program for South Asians.a Through flyers about the study distributed via other community health and social service agencies, including day programs, the local Alzheimer’s Society, the regional community care case management agency, and South Asian cultural and religious community leaders.

Ottawa

Memory Disorder Clinica (recently diagnosed French speaking patients).

a All agencies received permission from potential participants to pass on their contact information to the research associate who would then contact them and screen for eligibility.

Semi-structured interviews were used. This process produces more reliable data than questionnaires for pathways-to-care research (Drebing et al., 2004). Trained interviewers followed an interview protocol that explored accounts of early signs and symptoms, the subjective meanings given to them, and the sequence of events culminating in diagnosis. The majority of PsWD and carers were interviewed separately, except for two dyads who requested a joint interview. Most were interviewed in their homes, and the remainder at an alternative location of their choice. Interviews lasted from 20 to 40 min with PsWD and 60 to 90 min with carers. The language of the interview was determined by the interviewee. All were



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Figure 2. Relationship of carers to persons with dementia (PsWD).

digitally audio-recorded. English and French interviews were transcribed verbatim and French quotes were later translated into English for discussion and publication. Interviews in Cantonese, Mandarin, Hindi or Tamil were translated and transcribed by the interviewer. Approval was received from the Research Ethics Boards of all recruitment sites and investigators’ universities (Garcia et al., 2013; Koehn et al., 2012; Leung et al., 2011; McCleary et al., 2013).

Theoretical framework: Candidacy for care Dixon-Woods et al.’s (2006) synthesis of access to care for ‘vulnerable’ populations brings together a large and complex body of evidence. Analysis is guided by a focus on equity and on understanding how access to care is achieved by these groups within a health system which is free at the point of access. The construct is partitioned into seven dimensions: the first six are transition points at which a person’s candidacy for care must be negotiated; the seventh captures the broader environmental context of those negotiations (Table 2). The Candidacy model of access to care speaks to the dynamic and continually negotiated sense of legitimacy in using healthcare (Klassen, Smith, Shariff-Marco, & Juon, 2008). Its dimensions illuminate inequities ‘by tying seemingly individual behaviors in utilization to socially patterned influences’ (Klassen et al., 2008). Its value in understanding the complex process of obtaining care in disadvantaged populations is increasingly being recognised (Bristow et al., 2011; Garrett et al., 2012; Hunter et al., 2013 [online]; Klassen et al., 2008; Koehn, 2009; Kovandzˇic´ et al., 2011; Peiris et al., 2012).

Analysis We conducted a deductive thematic analysis using a qualitative descriptive approach (Boyatzis, 1998). The interview transcripts from all four sites were imported into NVivo



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Table 2. The seven dimensions of access identified in the Candidacy framework. Candidacy dimensions

Characteristics

Identification of candidacy

Differential recognition of symptoms as needing medical attention. Vulnerable populations are more likely to manage health as a series of crises. ‘Evidence of lower use of preventive services and higher use of accident and emergency facilities, emergency admissions and out-ofhours use’ (Dixon-Woods et al., 2006).

Navigation

Awareness of the services on offer, known to be reduced for vulnerable populations Mobilization of practical resources – e.g. time off work, transportation – that are typically less readily available to vulnerable populations

Permeability of services

Services are more or less accessible (‘permeable’) depending on the qualifications of candidacy required to use them (e.g. a referral) and the degree to which resources need to be organized. Less permeable services ‘demand a higher degree of cultural alignment between themselves and their users’ (Dixon-Woods et al., 2006).

Appearances at health services

Credibility once the client has presented at a health service depends on his or her competence in formulating and articulating the issue for which help is being sought.

Adjudications

Judgment calls made by the health professionals that clients initially consult. ‘Professional perceptions of the cultural and health capital required to convert a unit of health provision into a given unit of health gain may function as barriers to healthcare.. . . In addition, perceptions of social ‘‘deservingness’’ may play a role’ (Dixon-Woods et al., 2006).

Offers and resistance

Resistance by patients to referrals and/or offers of medication.

Operating conditions

‘Locally specific influences on interactions between practitioners and patients’ ‘The perceived or actual availability and suitability of resources to address [a claim to] candidacy’ (Dixon-Woods et al., 2006).

10 (2012) for coding. All relevant data in the 63 interviews were coded deductively relative to the seven dimensions of the framework and inductively as subcategories of each code. Multiple levels of sub-codes emerged within categories. Analytic emphasis was placed on experiences leading up to and including the diagnosis of dementia, as well as immediately afterwards (which allowed us to consider how participants accepted or rejected offers of medication and referral).

Accounting for ethnicity In parallel with others (Iliffe & Manthorpe, 2004; Kleinman & Benson, 2006; Wedeen, 2002), we take the position that ethnicity, when defined as particular shared cultural characteristics, may not have great explanatory power as an analytical category or determinant of health. We suggest that immigration, prestige-language ability, health beliefs and socioeconomic status are more salient determinants of health that tend to be subsumed within the concept of ethnicity. More complex theoretical and methodological approaches that move beyond



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differences seemingly associated with ethnicity or culture are necessary to understand diverse experiences of aging across, and among, ethnocultural groups (Koehn, Neysmith, Kobayashi, & Khamisa, 2013). Intersectionality theorists maintain that while disparities arising from biological sex differences, gender, ethnicity or class affect well-being, relationships are dynamic; intersections and compounding of these dimensions affect health and quality of life as people age (Hankivsky, 2011; Hulko, 2011; Iyer, Sen, & O¨stlin, 2008; Warner, 2008). Being mindful of intersections is essential to avoid ‘culturalist explanations of illness and caregiving behaviors that (a) risk framing ethnocultural minorities as inadequate ‘‘others’’ and (b) fail to account for power imbalances arising from intersections between multiple dimensions of difference’ (Koehn et al., 2012). Given the diversity within ethnocultural groups, and our fairly small sample sizes, we do not emphasise differences due to culture or ethnicity. We found that differences identified within a group may be greater than those between them. A strength of examining each of Canada’s four largest ethnocultural communities is being able to identify commonalities among them. Our goal is to provide direction to health care providers and policy makers seeking to optimize access to an appropriate diagnosis for all Canadians with dementia. Hence, unless we indicate otherwise, reported findings are common to all ethnocultural groups in our study.

Dimensions of candidacy The ensuing application of the Candidacy framework to our data (also summarized in Table 3) provides valuable insights into the complexity of the pathway to a diagnosis of dementia and relevant care. Identification. The first steps in gaining access to health care are determining that one needs and deserves it. Early symptoms of cognitive deficit reported by carers and PsWD in our study were consistent with those commonly reported, such as memory loss, word-finding problems or repeated questions (Farlow, 2005; Krull, 2005; McKhann et al., 2011; Nichols & MartindaleAdams, 2006). For most dyads, recognition that the symptoms exhibited by the PWD warranted medical attention was a gradual process of appraising their abilities relative to expectations of aging (Brown & Alligood, 2004; Howse, Ebrahim, & Gooberman-Hill, 2004). Family carers commonly attributed symptoms like forgetfulness to ‘normal aging,’ ‘human nature,’ or as characteristic of the PWD’s personality. They also confused symptoms of dementia with those of other illnesses (particularly depression), or attributed them to comorbid disorders or medications taken for them. An Ottawa carer attributed her mother’s failing memory to her ‘inadequate’ self-care (nutrition and exercise). An Indo-Canadian carer attributed his wife’s cognitive decline specifically to the Law of Shiva, whereby nature is continuously transformed and dissolved. Regardless of their expression, misinterpretations of symptoms by carers could be traced back to a lack of knowledge about the signs and symptoms of dementia, a point that carers themselves were quick to make: ‘I never knew there’s such a thing called eh. . . this. . . what you call it. . . dementia’ (Toronto carer). Literature confirms that help-seeking is hindered by lack of knowledge across different ethnocultural groups. Seventy per cent of the carers in Bond et al.’s (2005) survey attributed a lag time in help-seeking to this reason, but it may be of greater concern for immigrant populations with little exposure to educational media throughout their lives (Ferri et al., 2005) and for minorities with inadequate access to health information in their mother tongue



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Table 3. Highlights of findings for each dimension of Candidacy from our data. Identification

Facilitators: Carers and other family members have more exposure to the disease and more social capital (especially charter language skills and education); linking agencies (through targeted outreach to older adults, particularly immigrants). Barriers: Lack of knowledge of the symptoms (especially true of recent immigrants); PWD denial to preserve identity and control.

Navigation

Facilitators: Family members, especially those with higher levels of social capital; Linking agencies (referral, interpretation, transportation); Barriers: Family is not always available (e.g. childless, geographic or emotional distance); low social capital often associated with new immigrant status and language barriers; multiple caregiving responsibilities (especially female carers); stigma and shame prevents reaching out to non-family members for assistance; lack of affordable transportation options

Appearances and adjudications

Facilitators: Family carers who can convey observed symptoms to health professionals; Barriers: Cognitive impairment; desire to preserve identity, fear of institutionalization/loss of control inhibits PsWD expression of needs; failure of primary care physician to diagnose dementia in a timely fashion (complexity of disease, training, attitudes, time); poor communication by health care professionals (privileged clinical language; language incongruity with patient, choose not to speak the patient’s language or to communicate a diagnosis); physicians discounting carers’ accounts of behaviour change (influenced by disparities in social capital, especially across gender).

Offers and resistance

Facilitators: Continuity of community-based supports; Barriers: PWD and carer’s lack of trust in the physician, the medication itself, or their ability to manage it; lack of concrete practical supports for carers; stigmatizing nature of existing resources for PsWD do not support identity maintenance.

Service permeability

Permeability/accessibility was contingent on: (a) the service provider’s alignment with service users, including personality, gender and ethnolinguistic characteristics; (b) aspects of the physical environment such as office location; and (c) system-level factors such as wait-times and the referral process.

Operating conditions

The cost of medications and residential or home care; the availability of appropriate residential care and dementia care facilities; and weather conditions differ between provinces, and even cities within a province, resulting in uneven access.

(Fornazzari, Fischer, Hansen, & Ringer, 2009). Limited knowledge of dementia has been found among South Asians in the United Kingdom and Canada (Bowes & Wilkinson, 2003; Sadavoy, Meier, & Ong, 2004). Among francophones in Canada, improved health literacy is recommended to enhance access to health services (Chiarelli & Edwards, 2006). As in MacQuarrie’s (2005) study, PsWD that we interviewed exhibited significant ambivalence about the implications of their memory loss and potential dementia diagnosis; in some cases, symptoms were simultaneously acknowledged and resisted. PsWD in each site recognized problems with cognition. For example, a PWD in Vancouver went to consult a primary care physician because he was ‘feeble-minded’, a



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Toronto PWD described cooking mishaps (burning food) and forgetting words, a Calgary PWD was troubled by her lost ability to paint, and an Ottawa PWD noticed his slower reflexes and tendency to make more driving errors. Simultaneously, however, PsWD were also likely to deny or normalize symptoms: a Vancouver PWD said, ‘[I]t is not a disease, only memory loss’ and a Toronto PWD said, ‘[T]his is the way of the world. . .. (laughs) There’s nothing special about this.’ Others tried to hide or deny their disease: the wife of a Toronto PWD said, ‘Not even the children know about it. He’s very secretive in that respect.’ Phinney (2002) has documented the ‘fluctuating awareness’ among PsWD of their symptoms. Clare (2002) suggested that normalization of one’s own symptoms may be seen as self-protective, a means by which PsWD cope with the cognitive and social changes of dementia. Further, Sabat (2001) argued that PsWD often emphasize their mentally competent selves when treated as someone who is no longer ‘normal’ by healthy others who threaten their sense of agency and selfhood. This is consistent with Bourdieu’s position that economic, cultural and symbolic capital available to people in different social spaces affords them different levels of (symbolic) power (Siisiainen, 2003). PsWD are typically disadvantaged in this regard because their cognitive impairment erodes their access to and command of social capital, which increasingly depletes with disease progression (Sabat, 2001). Intersections of identity (i.e. being white, Englishspeaking (in Canada), well-educated) also influence social capital, perhaps illustrated by our finding in Calgary that Anglo-Canadian PsWD noticed their problems before their carers and played a key role in independently seeking help: ‘[A]s soon as he knew what his diagnosis was, like he’s been on the internet. This guy’s a fighter. He’s determined. He wants to beat this’ (Calgary carer). As members of a dominant majority with strong English language skills, these PsWD were positioned to access information. Leung et al. (2011) add that ‘because participants were sampled from a peer-support program, potentially, they may be more proactive. . . and may not experience the disease passively.’ With respect to intersections of identity, we found that being an immigrant it is not necessarily a disadvantage if the person has aged in Canada, speaks English, and either worked as a health professional or has family or friends who do. For example, in Vancouver, a Chinese-Canadian family carer who is a retired nurse told us, ‘[I]f I am not from medical field, I would [be] like anybody else, not aware of his changes.’ Family and friends beyond the PWD– carer dyad were often instrumental in calling attention to the need for medical care. Consistent with Krull (2005), having prior experience with dementia helped to facilitate this recognition. Carers were exposed to information about dementia on television, in magazines and at ethnolinguistically targeted presentations at their church. Two carers actively sought information about memory loss online. This facilitated recognition of dementia. Here, the effectiveness of ‘linking organizations’ (which connect formal and community-based services) or media capable of overcoming barriers due to lower levels of social capital is apparent (Ahmad et al., 2004; Blair, 2012; Sadavoy et al., 2004). It was also beneficial to have Putnam’s (Siisiainen, 2003) brand of social capital, which focuses on strong social networks. As in Krull’s (2005) study, pivotal events that could no longer be interpreted as normal also led to help-seeking. Examples include memory-related difficulty with instrumental activities of daily living (e.g. medication management, managing money), impaired judgement (e.g. dressing for the wrong season), physical symptoms (e.g. shuffle walking, endless appetite), or radical behaviour changes such as extreme apathy or aggression. More extreme behaviours included safety concerns such as getting lost, falls, unsafe driving, causing flooding or fires and inability to recognize rotten food.



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Navigation. Once they have established a need for services, the PWD and/or family carer need to find them. This requires awareness of the services on offer as well as a means of mobilizing resources, such as language, transportation and social supports. Proactive carers with knowledge of the health system and the education and confidence to seek out information and advocate for the needs of the PWD were invaluable as navigators. Carers fluent in English or French told us that they accessed online resources to find the supports they needed. Alzheimer Society resources, including a Chinese support group, were most commonly cited. However, at least one carer at each site reported not knowing about the Alzheimer Society or what resources it could provide. Not knowing how, or no longer being able to look things up on the internet was one problem: PsWD in Calgary and Ottawa said they had ‘given up’ using computers, because they had ‘lost interest’ or found it difficult. For nonEnglish speakers, not having online access to information in their own language compounded the difficulty: in Toronto, a PWD’s daughter commented, we are ‘left on our own to find things. There may be services we don’t access because we don’t know about them.’ In line with Keefe (2000), our findings show that structural factors relating to the availability of family members and to the patterning of helping behaviour by gender may in fact be more important than ethnicity or filial piety in determining whether or not elders receive navigational support from family members. Female carers in particular reported multiple caregiving responsibilities that limited their capacity to facilitate navigation for the PWD. For example, a caregiving daughter in Ottawa described the difficulty of a demanding job, being a single parent, and taking primary responsibility for a parent with dementia. Similarly, a spousal carer in Vancouver was limited in the navigation assistance she could provide to her husband because she was also caring for a grandchild. Across all sites we also heard about children who were ‘too busy’, lived too far away, or were not emotionally close to their parents in need. Our sample also included childless older adults. While other relatives such as siblings and their children sometimes stepped in, spousal carers did not feel confident that they could always rely on their help for navigation. Some of our participants maintained that asking for help from others outside their inner circle of family and friends could be difficult. A PWD in Calgary was afraid of talking to people about dementia because he had noticed people’s ‘attitudes towards the disease’ and ‘how they react to you.’ A PWD in Vancouver told us that he avoids talking about his dementia to his fellow churchgoers because it will ‘scare people away.’ The experience of an Ottawa carer indicates that these fears have some grounding in reality: ‘We don’t have too many friends left . . . [people] withdraw from you! It’s not a contagious disease!’ These examples speak to limitations of social networks and to the pervasiveness of the stigma associated with dementia across different cultural communities. While the stigma and shame associated with cognitive impairment has been foregrounded in studies of people of ‘Asian’ cultural background (Bowes & Wilkinson, 2003; Chee & Levkoff, 2001; Mackenzie, 2006; Purandare, Luthra, Swarbrick, & Burns, 2007; Zhan, 2004), our study revealed many instances of stigmatization in the ‘non-Asian’ samples in Calgary and Ottawa. Navigation was also thwarted by transportation or mobility issues and environmental factors. Several participants commented that the offices of people they needed to consult were too far from their homes; one couple moved from their rural home to a city for this reason. Taking transit was difficult for older South Asians who had no prior Canadian transit experience, got lost when attempting to do so, had difficulty getting to the bus



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stop in the winter months and whose bus service did not run on Sundays. Typically, PsWD rely on their family carers, most often their spouses, for transportation to doctor’s appointments and elsewhere, but adult children and non-family members also assume this role, if available. Appearances and adjudications. Dixon-Woods et al. (2006) identify two dimensions of the interaction between a patient and health professionals that influence the ability to establish a need for care. ‘Appearances’ refers to the patient’s competency in articulating the health issue or their need for care. This may be influenced by their language skills, social class, gender, age and cognition. Judgements (or ‘Adjudications’) about a patient’s needs are made by the health professional based on their own knowledge, experiences and biases. Appearances and adjudications were analyzed simultaneously since they often appeared concurrently in participants’ narratives. The outcome of visits to a primary care physician was influenced by the communication skills of patients and providers, and by the relative authority of the PWD and his or her carer in the encounter. This was influenced, in turn, by their beliefs and expectations. The inability of the PWD to communicate his or her needs was exemplified in Ottawa, where one carer told us that the PWD ‘doesn’t chat as much’, which required intensive questioning by the physician. Concerns with preservation of identity and control also emerged. One carer thought that the PWD was afraid to communicate what she was experiencing for fear that she would be placed in an institution. At least one PWD at each site had visited their primary care physician independently, usually to replenish medications for a comorbid condition, although two – in Calgary and Ottawa – specifically presented their dementia symptoms to their primary care physician. In Toronto, we noted five instances whereby a PWD avoided or tried to avoid detection of their dementia symptoms by visiting the primary care physician without the carer. Reluctance to disclose information to their primary care physicians was related to beliefs that they did not need help, did not know how to talk to their doctor, that the doctor was not sufficiently qualified to help them, or would not disclose their true condition to them to protect them from worry. A minority of immigrant family carers in Vancouver and Toronto also believed that the doctor could not help them with the symptoms they witnessed because they did not associate them with a ‘disease.’ Family carers were nonetheless pivotal in drawing the primary care physician’s attention to the PWD’s symptoms, sometimes inciting the anger of a PWD who ‘wanted to prove to the doctor that he was OK’ (Toronto carer). Many family carers, particularly spouses, said they always accompanied the PWD to consultations, and were present for the diagnosis. Most of them took this opportunity to voice their concerns over the changes they had witnessed in the PWD. For some, these reports led to the PWD’s assessment or referral to a specialist, but at each of the four sites, carers complained that their primary care physician was not receptive to their concerns, and was slow to refer the PWD for dementia testing. In Calgary and Ottawa, carers said they had to be ‘insistent’ or ‘demanding’, but it appears that those in Vancouver and Toronto felt more disempowered by the primary care physician’s disregard of their concerns: ‘the family doctor said ‘‘no’’ in the beginning, he did not think of it. He felt I might be too sensitive’ (Vancouver carer). Numerous studies have identified under-diagnosis of dementia by primary care physicians as a problem, with as few as 50% of dementia cases diagnosed by them (Boise, Camicioli, Morgan, Rose, & Congleton, 1999; Borson, Scanlan, Watanabe, Tu, & Lessig, 2006). A range of complex factors contribute to this, including the



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subtlety and variability of dementia symptoms, limited time availability of primary care physicians with the patient, negative attitudes toward the importance of assessment and diagnosis and lack of a definitive diagnostic test (Boise et al., 1999; Hum et al., 2014; Shah & Lindesay, 2000). Primary care physicians are least likely to accurately diagnose dementia when patients have low education and literacy, and are non-English speaking (Borson et al., 2006). The presence of comorbidities often confounded diagnosis, although at times physicians would identify symptoms of ADRD when treating the patient for another ailment. In Toronto, one primary care physician’s focus was limited to a PWD’s arthritis; similarly, in Ottawa, a carer complained that the primary care physician failed to diagnose dementia because he focused only on a comorbid condition. Primary care physicians were reported to attribute dementia symptoms to ‘normal aging’ or would diagnose and sometimes treat symptoms as disorders such as sleep apnoea, depression, or adjustment disorder. Participants at all sites typically made at least three visits to a primary care physician or specialist before securing a diagnosis and recalled having multiple scans and tests: ‘[T]hey were coming out of my ears’ (Ottawa PWD). On the whole, our PWD and carer participants spoke more to the attributes of the physician’s communication skills than to their own. A primary care physician in Ottawa who was judged to be good at explaining things was deemed extremely helpful, but others described their physicians, particularly specialists, as poor communicators and short on empathy: ‘He was in a hurry and he did not say anything and we dared not ask him. We took the prescription and went home’ (Vancouver PWD); ‘He was very bad. He was not empathetic at all. He didn’t even listen’ (Toronto carer). In parallel with Hinton, Franz, and Friend’s (2004) findings, several dyads in Vancouver and Toronto reported that medication was prescribed without the carer understanding what it was for. In some cases, communication was impeded by a language barrier but not always: a PWD complained that the doctors ‘never talk to me. They mention everything to my daughter [in English].’ His primary care physician spoke Hindi, in which both he and his daughter are fluent, but chose not to use it. In parallel, carers in Vancouver described their Chinese speaking doctors as relatively uncommunicative: one said nothing about the diagnosis, another withheld the results of a blood test and a third did not mention the medication dosage. In the latter case, the carer gave the PWD the wrong dose, which made him sick. Physician communication skills are recognized factors in the management of dementia (Schoenmakers, Buntinx, & Delepeleire, 2009) and their limited communication with and support of family carers has been criticized (Iliffe, 1997). Interactions between primary care physicians and patients are challenged by time constraints (Hum et al., 2014; Koch & Iliffe, 2010). Another factor may be a culturally influenced reluctance on the part of the physician to share a diagnosis of dementia (Hinton, Franz, & Friend, 2004; Zhan, 2004). Offers and resistance. This dimension of Candidacy is identified as the acceptance of, and resistance to, offers of care (Dixon-Woods et al., 2006). It may be influenced by the degree of alignment between the offer and the recipient’s health beliefs, cultural suitability, as well as various social determinants of health (Koehn, 2009). Following interactions with the primary care physician, offers commonly included prescriptions, drug samples, follow-up appointments, referrals to memory specialists and emotional support for carers. Offers made by specialists included prescriptions and changes in medication, referrals to a new doctor, diagnostic scans and drug samples.



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Offers were most often accepted on the basis of trust in the physician. As recounted by a PWD from Vancouver, ‘I will take [medication] because he is a doctor. I believe my family doctor.’ Correspondingly, resistance to offers was frequently attributed to lack of confidence in the physician and in the suitability of medications offered. For example, in Toronto, one carer questioned the appropriateness of a prescription offered without prior diagnostic imaging, whereas others mentioned accepting prescriptions of allopathic medicine while complimenting these with alternative remedies. PsWD across sites worried about side effects from medications and the complexities of managing medications. Offers of community-based supports included education and peer programs at the local Alzheimer Society, adult day programs, personal support workers and social workers, housekeeping services and ethno-specific community groups. Carers and PsWD who accepted such offers appreciated the ‘continuity’ of support and access to educational resources. However, some carers resisted offers of educational sessions and carer support groups: ‘I think that it’s bad enough to live with a situation without having to listen to everyone else’s problems’ (Ottawa carer). Generally, carers’ resistance to offers was due to their perception that the services or advice available was not ‘concrete’ or ‘practical.’ Some complained about a ‘lack of offers’: a Calgary carer noted, ‘It’s not just the testing, it was the support. That’s what I find is that there is no support.’ Previous research suggests that although PsWD and their families rely on their primary care physician for access to care, physicians may not think they have the training or time to implement these resources with patients (Hum et al., 2014; Koch & Iliffe, 2010; Schoenmakers et al., 2009). Resistance by PsWD to offers of support also reflected their desire to maintain their identity and avoid stigma. For example, two PsWD did not want to be ‘put in with all the loonies’ (Ottawa) or exposed to ‘people who were far worse’ (Calgary). Both carers and PsWD had difficulty relinquishing former roles, which made it difficult for them to accept support. A caregiving husband from Ottawa was reluctant to step away from his ‘role as protector’ to obtain respite, whereas a PWD from Calgary struggled to accept her husband’s new caregiving role. Permeability of services. The organization of health services can render them more or less accessible or ‘permeable.’ According to Dixon-Woods et al. (2006), services have low permeability when they require a high degree of alignment between users and providers, the mobilization of many resources and impose qualifications for eligibility. Conditions that limit permeability include health literacy, language, hours of operation and funding models for providers (Koehn, 2009). The importance of alignment between participants and health services and its effect on service permeability was evident across all four sites. Fitzpatrick and Vangelisti (2001) maintain that trust and understanding best develop in health care settings where patients interact with health professionals of a similar identity (i.e. gender, age, class, ethnicity). The complexity of identity and thus the task of finding good alignment are illustrated by the account of a Calgary PWD who surprised her caregiving son by selecting a male primary care physician after searching pointedly for a female one. For long-time Canadians, such as those interviewed in Ottawa, alignment resulted in and was augmented by continuity with primary care physicians who were familiar with the person and able to monitor changes in their long-term health. Consistent with previous studies (Bowes & Wilkinson, 2003; Hinton et al., 2004; Working Group on Health Services in French, 2005), ethno-linguistic congruence between



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participants and services was important for Chinese, South Asian and Francophone dyads. Vancouver carers and PsWD generally preferred services offered in Chinese languages and one carer told us that some of her acquaintances experiencing Alzheimer Disease ‘give up all the treatment because they cannot find [bilingual] resources and strong support.’ Similarly, a Toronto PWD was worried about finding a care home in which there was ‘someone with whom [she could] carry on a conversation.’ Ethno-specific linking organizations were pivotal to ensuring service permeability for Vancouver and Toronto participants. A PWD in our francophone sample was reverting back to a dialect from France and had difficulty communicating with his neurologist. Despite efforts by Canada to improve access to health services by francophones and increase the number of health professionals who offer services in French (Garcia et al., 2013), several Ottawa carers remarked on the low permeability of physician services. Permeability was further affected by environmental factors. Several Vancouver dyads with limited mobility (in walking and driving) reported difficulty accessing services located in distant parts of the city or on the upper floor of a building without an elevator. An Ottawa carer was similarly frustrated with a memory clinic: ‘We’d get there; we’d park the car. It was complicated – at the end of the hallway. And I can’t walk easily. At the far, far end of the hallway.’ The organization of healthcare systems further influenced permeability. Participants expressed frustration with long wait-times to access services (two weeks to three months) and to obtain subsequent test results or specialist appointments (6–8 months in one case). A Calgary carer told us, ‘It was one of those things where you book an appointment and you get one three months later. And it was also compounded by the fact that this doctor was a lady, and went on pregnancy, mat leave twice. So then you have locums the whole time.’ Moreover, the process required to obtain appointments often involved referrals back and forth between linking organizations, specialists and primary care physicians, increasing the time required. Several francophone dyads were fortunate to be assigned a caseworker who regularly phoned and visited them, thus increasing permeability. Local operating conditions. The final dimension of the framework acknowledges that Candidacy is subject to local influences, including perceived suitability and availability of resources, and local policies. For example, subsidies for medications and rules governing eligibility were not consistent across the different sites in our study, because health insurance plans fall under provincial jurisdiction. One Calgary PWD was trying a new drug that was not yet covered by Alberta Health Insurance; another had to take early retirement in order to qualify for government funding for his expensive medication. An additional factor influencing the cost of medications was participants’ enrolment in ADRD drug research that enabled them to access medications at reduced or no cost. Some Vancouver participants were eager for PsWD to be enrolled in the Alzheimer’s Drug Therapy Initiative for this reason. However, several PsWD and their carers said that their physicians declined to fill out the necessary paperwork. As one carer in Vancouver explained: [If she can] join the government research project, [she] can save the $150 [a month] drug fee. But I asked her family doctor several times, he would look rather torn as he said the procedures were long, a lot of steps, very complicated. He said that it would be very difficult to apply for it. So he was unwilling to help my mother to do this application.



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Financial capacity also influences families’ access to suitable residential or dementia care facilities. In Ottawa, a carer told us that special care units for people with ADRD fill as soon as they open, unless you can afford to move into a private facility. A carer in Toronto thought it might be cheaper to fly her father to England to live with relatives than put him in a nursing home that was unlikely to meet his needs; another described the difficulty of finding an affordable option for her mother whose only income is a very limited pension.

Policy and practice implications The Canadian ‘Rising Tide’ strategic policy document (Alzheimer Society of Canada, 2010) targets four themes for reducing the incidence and impact of dementia in the Canadian context: two emphasize prevention in terms of healthy eating and exercise; another two emphasize care by ensuring lay carers are properly equipped and supported. While the latter of these align more closely with our findings, both assume that the PWD has secured a diagnosis of dementia. The difficulty of doing so is not acknowledged in these strategic directions. Our findings thus compliment the report by raising important tactical policy issues in relation to the diagnosis and management of dementia in communitydwelling seniors at a time when jurisdictions are attempting to respond to rapid increases in dementia incidence and prevalence. We discuss these in relation to each candidacy dimension in turn. Problem identification. Clearly, we must improve public awareness of dementia versus normal aging (Prorok, Horgan, & Seitz, 2013; Rimmer, Wojciechowska, Stave, Sganga, & O’Connell, 2005). Messaging must be positive, reassuring and target family and friends as much as those with dementia. It should stress that cognitive decline is usually slow and that often people will die from other causes before reaching the terminal stages of dementia. People must be reassured that differentiating signs and symptoms of dementia from those of normal aging is difficult. Guidance should explain that normalisation is typical and has benefits associated with reducing stress and anxiety. There is a trade-off between timely and delayed intervention: delay may lead to unsupported caregiving; hasty intervention may lead to PsWD experiencing unwarranted loss of autonomy, and morale. Guidance must also recognise that while normalisation and delay are typical, narratives of delay are varied and individualistic. Messages must be ethnically and culturally relevant (Ayalon & Areań, 2004) in terms of situation, narrative, characterisation and language and should be disseminated in ethnically relevant media. Communication of health information through informal networks and mass communication was deemed most effective by the immigrant women in Ahmad et al.’s (2004) Canadian study. Innovative targeted knowledge translation strategies that integrate public forums and the internet should also be promoted (e.g. the Intercultural Online Health Network, see Lauscher, Stacy, Cordeiro, & Ho, 2012). Navigation. Our findings indicate that targeting messages at carers is important for successful navigation. Involving carers with the highest social capital in relation to each patient will be beneficial. Mass media campaigns should recommend the use of such carers and discuss prestige-language fluency as one method for identifying them. Family and friends should be targeted whenever possible, drawing on help from beyond the immediate pool of caregiving relationships; difficulties of broaching dementia-related issues with less intimate contacts should be acknowledged.



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Difficulty travelling to services may be assuaged by extending the development of low-cost transportation for the elderly. Too often, established services remain unknown to those who might use them. Language is an obvious barrier to this process. Identifying ethnicallyspecific community agencies as intermediaries in linking people with services may have advantages in overcoming linguistic and other challenges. Policymakers should recognise that not everybody in need of help has access to people who can navigate the system on their behalf; ignoring those who do not is unacceptable. Policy relating to navigational effectiveness should assume the worst and plan accordingly. Structural factors (e.g. physical distance, familial relationships) that impede navigational assistance may be more important than ethnic ones. The use of patient navigators has received substantial attention in cancer care but little in relation to other conditions, though there are examples (Black et al., 2010; Ferrante, Cohen, & Crosson, 2010; Lubetkin, Lu, Krebs, Yeung, & Ostroff, 2010). A strong case may be made for the development of culturally and linguistically competent patient navigators responsive to the early signs, symptoms and initial care-seeking of people with dementia (Blair, 2012). Appearances and adjudications. The central role of primary care physicians in diagnosing dementia is a key to understanding and improving policy relating to case presentation and service needs assessment (Hum et al., 2014). Carers must understand the centrality of this role so as to maximise their opportunity to influence the encounter. Patient presentation is strongly shaped by providers’ communicative ability. Providers must be aware that the communication skills of candidates may not be ideal and must modulate their messages and the manner of their delivery accordingly. Candidates have expectations that providers will express all relevant information and ask all appropriate questions. Thus, providers must encourage carers and patients to ask as many questions as they require and to provide as much information as they judge relevant, and to take their time in doing so. Additionally, providers need to acknowledge inequities in power between them and their elderly patients and their families, particularly more recent immigrants, so as to avoid silencing their concerns. To not accommodate this in clinical encounters is counterproductive. Mass media campaigns should clearly describe and legitimise this requirement and health system planning should account for it. Offers and resistance. In order to increase uptake of offers of care, carers should be informed of their value. In turn, providers need to be made aware of likely resistance and employ strategies to manage it. Offers are most often accepted on the basis of trust in the provider making them. Lack of knowledge about local community services and supports on the part of primary care physicians (Turner et al., 2004) may lead to a lack of conviction in recommending them (Hum et al., 2014). Hence, ensuring up-to-date and comprehensive knowledge about local facilities is vital to achieving successful engagement with them by users. Primary care providers should be required to maintain and demonstrate their knowledge of local services for people with dementia as part of continuing professional development. The local services must actively engage with local primary care clinics and be held accountable for doing so by senior management. Acceptance or resistance of offers is often influenced by cultural and family-related factors. Finding the right ‘fit’ between a care recipient and provider entails a patientcentred focus that takes into account the compounding intersections of their identities (e.g. faith, gender). Discussion between providers, patients and carers to understand the



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provider characteristics that would result in their being deemed trustworthy is advisable. Community-based agencies with which clients have established trusting relationships may be able to assist in matching them with appropriate services (Sadavoy et al., 2004). Service permeability. Service permeability in our study is fundamentally associated with cultural responsiveness and patient or carer preferences. Providers must understand the importance of shared personal experiences in relation to factors like gender, language, age, social class and location in facilitating the development of relationships with patients and carers. Of these, language is probably paramount. Systemic features such as continuity of care are likely to facilitate service permeability through optimising comprehensive and mutual knowledge. Lack of continuity may be seen by users as a barrier to permeability even after achieving initial access. Having already undergone time-consuming processes of diagnosis, delays once in the system appear unreasonable and damaging, especially in the context of messaging that encourages people not to delay seeking help. The use of system navigators may be useful in this context to ensure continuity across different providers and services. Reducing delay by improving primary care-centred diagnostics without specialist referral may be essential. Various primary care-centred clinical models for dementia have been piloted, including specialist outreach (Greaves et al., 2013), primary care ‘subspecialty’ clinics (Lee, Kasperski, & Weston, 2011) and improvements in training for primary care providers in dementia diagnoses and care (Cody, Beck, Shue, & Pope, 2002). Local operating conditions. The influence of local conditions has major impacts on candidacy processes. Two examples concern the costs of medication and care, and differential access to long-term care for people from ethnic minorities. The patchwork character of the Canadian health system inevitably leads to variation in service availability. Implementation of clinical guidance at a national level has potential to improve standards across jurisdictions. Access to long-term care facilities in which relevant ethnic minorities are well represented can be challenging. Often, costly private arrangements are required to ensure ethnic minority seniors feel psychologically comfortable in their long-term care homes. Stable support from provinces to help community organizations develop integrated information sharing, care and residential communities for members with mutual ethnic, linguistic or cultural experiences will be beneficial.

Conclusions Four measures seem particularly attractive in terms of executing health policy to reduce barriers to candidacy during the prediagnostic period of dementia for all seniors. Firstly, mass media programmes, in combination with targeted outreach through linking agencies to specific communities of older adults, should demystify the condition, rendering it nonthreatening or non-frightening, acknowledging difficulties in identifying caseness and emphasising how common the experience of dementia is today. Secondly, PsWD, their informal carers and their primary care provider team should be formally recognised as a cluster of resources constituting a single, definable unit, providing a coherent clinical and social locus for candidacy processes to be effectively and efficiently executed. This might include both read and write access to primary care electronic medical records for all members of that unit, including patients and carers, to enable up-to-date communication



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of conditions and circumstances and appropriate, timely responses. Thirdly, emphasising and supporting the centrality of primary care for diagnosis and service provision will create an organisational context in which familiarity, relationships, continuity, timeliness and relevance are optimal. Lastly, these recommendations should be fundamental in the development of national dementia strategies which establish and execute priorities to address immediate patient and carer needs in the earliest, symptomatic stages of the disease (Jones, 2014). References Ahmad, F., Shik, A., Vanza, R., Cheung, A., George, U., & Stewart, D. E. (2004). Popular health promotion strategies among Chinese and East Indian immigrant women. Women & Health, 40(1), 21–40. Alzheimer Society of Canada. (2010). Rising tide: The impact of dementia on Canadian society. Ottawa, Ontario: Alzheimer Society of Canada. Retrieved from http://www.alzheimer.ca//media/Files/ national/Advocacy/ASC_Rising_Tide_Full_Report_e.pdf. Ayalon, L., & Areań, P. A. (2004). Knowledge of Alzheimer’s Disease in four ethnic groups of older adults. International Journal of Geriatric Psychiatry, 19(1), 51–57. Black, H. L., Priolo, C., Akinyemi, D., Gonzalez, R., Jackson, D. S., Garcia, L., . . . Apter, A. J. (2010). Clearing clinical barriers: Enhancing social support using a patient navigator for asthma care. Journal of Asthma, 47(8), 913–919. Blair, T. R. (2012). ‘‘Community ambassadors’’ for South Asian elder immigrants: Late-life acculturation and the roles of community health workers. Social Science & Medicine, 75(10), 1769–1777. Boise, L., Camicioli, R., Morgan, D. L., Rose, J. H., & Congleton, L. (1999). Diagnosing dementia: Perspectives of primary care physicians. The Gerontologist, 39(4), 457. Bond, J., & Corner, L. (2001). Researching dementia: Are there unique methodological challenges for health services research? Ageing and Society, 21(01), 95–116. Bond, J., Stave, C., Sganga, A., Vincenzino, O., O’connell, B., & Stanley, R. (2005). Inequalities in dementia care across Europe: Key findings of the facing dementia survey. International Journal of Clinical Practice, 59(s146), 8–14. DOI: 10.1111/j.1368-504X.2005.00480.x. Borson, S., Scanlan, J. M., Watanabe, J., Tu, S. P., & Lessig, M. (2006). Improving identification of cognitive impairment in primary care. International Journal of Geriatric Psychiatry, 21(4), 349–355. DOI: 10.1002/gps.1470. Bowes, A., & Wilkinson, H. (2003). ‘We didn’t know it would get that bad’: South Asian experiences of dementia and the service response. Health and Social Care in the Community, 11(5), 387–396. Boyatzis, R. E. (1998). Transforming qualitative information: Thematic analysis and code development. Thousand Oaks, CA: Sage. Bristow, K., Edwards, S., Funnel, E., Fisher, L., Gask, L., Dowrick, C., . . . Chew Graham, C. (2011). Help-seeking and access to primary care for people from ‘‘Hard-to-reach’’ groups with common mental health problems. International Journal of Family Medicine [Epub ahead of print] DOI: 10.1155/2011/490634. Brown, J. W., & Alligood, M. R. (2004). Realizing wrongness: Stories of older wife carers. Journal of Applied Gerontology, 23(2), 104–119. Chee, Y. K., & Levkoff, S. E. (2001). Culture and dementia: Accounts by family carers and health professionals for dementia-affected elders in South Korea. Journal of Cross-Cultural Gerontology, 16(2), 111–125. Chiarelli, L., & Edwards, P. (2006). Building healthy public policy. Canadian Journal of Public Health, 97(Suppl 2), S37–S42. Clare, L. (2002). We’ll fight it as long as we can: Coping with the onset of Alzheimer’s Disease. Aging & Mental Health, 6(2), 139–148. DOI: 10.1080/13607860220126826.



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Koehn et al.

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Sharon Koehn, PhD, is a Clinical Research Professor in the Department of Gerontology at Simon Fraser University and a Research Associate at Providence Health Care. Trained as a medical anthropologist, she conducts interdisciplinary community-based research with immigrant older adults on dementia, health care access, chronic disease self-management support, quality of life and mental health promotion. Melissa Badger is a Master of Arts Candidate in the Department of Gerontology at Simon Fraser University. Carole Cohen is clinical director of the Community Psychiatric Services for the Elderly at Sunnybrook Health Sciences Centre and Professor in the Department of Psychiatry at the University of Toronto. Lynn McCleary, RN, PhD is an Associate Professor in the Department of Nursing and Research Associate in the Niagara Community Observatory at Brock University in St. Catharines, Canada. She is an Adjunct Member of the Institute for Life Course and Aging at the University of Toronto in Toronto, Canada and an Adjunct Associate Professor in the School of Nursing at Queens University in Kingston, Canada. She is president of the Canadian Gerontological Nursing Association. Neil Drummond is an epidemiologist, professor in the Department of Family Medicine at the University of Alberta and holds the Capital Health Chair in Primary Care Research. He chairs the pan-Canadian DementiaNET research group studying transitions and other aspects of care for people with dementia and their informal caregivers. He is co-principle investigator for the Canadian Primary Care Sentinel Surveillance Network (CPCSSN) and is using CPCSSN data to investigate the management of dementia in community-based primary care settings.


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