Age,Dementia,and Diagnostic Candidacy: Examining the Diagnosis of Young Onset Dementia Using the Candidacy Framework

Abstract

People living with young onset dementia face significant barriers to diagnosis, resulting in delays, misdiagnoses, and treatment gaps. We examined the process of accessing and delivering a diagnosis of young onset dementia using the candidacy framework as a conceptual lens. Semi-structured interviews were conducted with six people living with dementia, 14 family members, and 16 providers in a western Canadian city. Participants’ accounts revealed the diagnosis of young onset dementia as a negotiated process involving patients, family members, and health professionals. Assumptions about age and dementia affected how participants interpreted their symptoms, how they presented to services, and how they, in turn, were perceived by providers. At the organizational level, age-restrictions, fragmentation, and unclear referral pathways further complicated the diagnostic process. Our findings lend support to the growing call for specialist young onset dementia care and point toward several recommendations to develop more age-inclusive diagnostic services.

Keywords

dementia young onset dementia diagnosis health care access candidacy semi-structured interviews qualitative Canada

Introduction

Access to a timely diagnosis is widely considered an essential component of dementia care and has been adopted as a principal goal of dementia care policies around the world (World Health Organization, 2012). Although a diagnosis of dementia carries significant consequences, it also confers important benefits (Jutel, 2011). Timely diagnosis enables individuals to understand their condition, adapt to changes, and to participate in decisions about their current and future care. Diagnosis also facilitates access to treatments, services, and resources such as financial benefits. Despite the movement to expand diagnostic services, dementia remains underdiagnosed worldwide (Prince et al., 2011; World Health Organization, 2012). In high-income countries alone, an estimated 50% to 80% of dementia cases go undetected (Prince et al., 2011).

For people living with young onset dementia (dementia that develops before the age of 65), the barriers to diagnosis appear to be compounded, resulting in prolonged periods of uncertainty, misdiagnosis, and gaps in treatment (Draper et al., 2016; van Vliet et al., 2013). As individuals with young onset dementia are more likely to be working and supporting families, the financial impacts are profound (Kandiah et al., 2016). Without a diagnosis to explain changes in behavior or productivity, working individuals risk losing their employment and may be unable to access financial benefits. Given the significance of dementia diagnoses and evidence of diagnostic delays, this qualitative study aimed to critically examine the process of accessing and delivering a diagnosis of young onset dementia from the perspectives of people living with young onset dementia, family members, and providers.

Background

Dementia is an umbrella term for a range of conditions characterized by progressive impairment in cognitive function. Symptoms vary and may involve attention, memory, language, perception, motor skills, mood, or behavior (World Health Organization, 2012). Young onset dementia, sometimes called early onset dementia, refers to individuals who develop dementia at younger ages, typically before the age of 65 (Carter et al., 2018). The category echoes the previous distinction between senile and pre-senile forms of dementia, which demarcated dementia diagnoses on the basis of age (Ballenger, 2006). Age is no longer used to discern dementia subtypes (Carter et al., 2018); the concept, however, is increasingly used to draw attention to a population that remains overlooked in dementia research, policy, and practice. Although young onset dementia is frequently described as rare, recent epidemiological studies (Kvello-Alme et al., 2019; Withall et al., 2014) report prevalence estimates comparable to other well-known neurological diseases such as Parkinson’s disease (Marras et al., 2018).

Emerging research on young onset dementia points to significant barriers to health and social care, beginning with access to a diagnosis. Evidence suggests that younger individuals face significant diagnostic delays (Draper et al., 2016; Novek et al., 2016 van Vliet et al., 2013). Novek et al. (2016) found that Canadians below 65 years waited three times longer than older adults to obtain a diagnosis of dementia. A prospective cohort study in the Netherlands reported that patients with young onset dementia waited 4.4 years from symptom onset to diagnosis, compared with 2.8 years among older adults (van Vliet et al., 2013).

Qualitative studies exploring the lived experiences of people with young onset dementia and their families routinely identify the diagnostic process as a significant source of stress and a key area for improvement (Millenaar et al., 2016; Rabanal et al., 2018 van Vliet et al., 2011). Few studies, however, have focused specifically on the diagnostic process (Spreadbury & Kipps, 2019; van Vliet et al., 2011), or included the perspectives of people living with young onset dementia. What’s more, discussion of access remains largely atheoretical, limited to a description of barriers, or measurements of the time elapsed between symptom onset and diagnosis. Theoretically informed, in-depth qualitative research is, therefore, needed to better understand the social and structural factors that shape the diagnostic process. To address this gap, we used qualitative interviews to explore how people living with young onset dementia, family members, and providers experience the diagnostic process. Applying the lens of the candidacy framework (Dixon-Woods et al., 2005, 2006), the present analysis examines multiple dimensions of access and explores the complex relationships among care experiences, provider practices, and the wider context of health services.

Conceptualizing Access: The Candidacy Framework

Developed by Dixon-Woods et al. (2005), the candidacy framework conceptualizes access to health care as a multifaceted and iterative process of negotiation among individuals, providers, and institutions. Central to the framework is the notion that a person’s candidacy or eligibility for care is interpreted, pursued, sustained, or diminished through interactions with providers and services. These micro-level social interactions are influenced by organizational conditions such as the configuration of health services, as well as the wider social and policy context.

The framework delineates six constructs that represent distinct but overlapping dimensions of candidacy (see Table 1). The dimensions broadly correspond to key stages in a patient’s health care trajectory, beginning with the recognition that symptoms require medical attention, through presentation at services, and culminating in an offer of care. The latter construct refers to the broader organizational features of health services that influence these interactions. The framework has been used to examine the health care experiences of diverse populations (Chase et al., 2017; Chinn & Abraham, 2016; Macdonald et al., 2016), including older adults with dementia (Koehn et al., 2016).

Table 1.

Dimensions of Candidacy (Dixon-Woods et al., 2006).

Dimensions	Characteristics
Identification	The process of recognizing a health issue that requires medical attention.
Navigation	The process through which people find and gain access to services.
Permeability of services	The degree to which services are inclusive or restrictive. More permeable services have few entry requirements, while less permeable services demand more qualifications.
Appearances and adjudications	Appearances refers to the ways in which patients present their health issue and assert a claim for medical attention. Adjudication refers to health professionals’ judgments regarding an individual’s candidacy for care.
Offers and resistance	The interventions or services offered (or not offered) following adjudications, and patients’ decisions to accept or decline such offers.
Operating conditions	Organizational and contextual factors that influence provider–patient interactions and the process of asserting candidacy.

Method

This study used the method of semi-structured interviews to examine young onset dementia health and support services in Winnipeg, Canada. This approach was selected to facilitate a flexible, in-depth exploration of participants’ experiences while also maintaining a focus on health and support services.

Study Context

The study was conducted in Winnipeg, Manitoba, a midsized city in western Canada. In Canada, provinces are responsible for the delivery of medical services, which are universally insured under the 1984 Canada Health Act. Like most cities, Winnipeg does not have specialized services for young onset dementia, except for a support group for caregivers run by the local Alzheimer Society, a nonprofit organization. There is no centralized, multidisciplinary dementia clinic in the city. Instead, specialist dementia assessment is available through various services administered by different medical specialties (e.g., geriatric services and geriatric mental health services), or through referral to individual practitioners from a range of specialties (e.g., geriatrics, psychiatry, neurology, and psychology).

Participant Recruitment

With ethical approval from the Research Ethics Board of the University of Manitoba, we recruited a purposive sample of people with dementia, family members, and providers between February 2017 and November 2017. Participants with dementia and family members were recruited through support groups, providers, and advertisements. Novek attended three support groups hosted by the local Alzheimer Society to discuss the study and distribute recruitment materials (two support groups for people with early stage dementia, and one support group for caregivers of people with young onset dementia). Dementia care providers were asked to offer recruitment materials to eligible patients and family members. The study was also advertised in newsletters, long-term care facilities, and on a study website.

Providers with relevant expertise were identified through websites for universities, government agencies, health and social care organizations, and invited to participate in an interview. Employing snowball sampling, participants were asked to suggest other contacts with relevant experience. To recruit primary care providers, a study advertisement was distributed to a network of family medicine clinics affiliated with the University of Manitoba.

Participants

In total, 36 participants were interviewed. Twenty participants from 12 families took part: six individuals living with young onset dementia, 11 spouses, two adult children, and one niece. Participants with dementia ranged in age from 57 to 66 years (two females and four males), and all were married at the time of the interview. Participants’ dementia subtypes were as follows: Alzheimer’s disease (n = 4), Lewy body dementia (n = 1), and unknown (n = 1). Family members ranged in age from 20 to 76 years (seven males and seven females). In two cases, the relative with dementia had died within the past year. Participants’ family members had diagnoses of Alzheimer’s disease (n = 10), Lewy body dementia (n = 1), frontotemporal dementia (n = 1), and unknown dementia (n = 2). All 20 family participants were White and born in Canada.

We also interviewed 16 providers who had experience working with people with young onset dementia or their family members. There were 11 participants from a range of health professions (neurology, psychiatry, psychology, family medicine, geriatrics, and nursing) and five service providers from social work, recreation therapy, and nonprofit organizations.

Interview Procedures

Participants with dementia had the option to have someone accompany them, and all six chose to have their spouses present. All participants provided informed consent before undertaking interviews. For participants with dementia, the consent process was designed to be inclusive and rigorous. Novek read through the consent form, taking time to check with participants to ensure they understood the material. Participants with dementia had the option of providing verbal or written consent, and all six opted to provide verbal consent. All other participants were required to provide written informed consent.

In depth, semi-structured interviews were conducted with participants living with young onset dementia, and their family members. These explored multiple facets of their diagnostic experience such as symptom onset and help-seeking, encounters with health care providers, diagnostic testing and communication, post-diagnostic supports, and the impact on the family. Open-ended questions elicited participants’ experiences of the diagnostic process while also facilitating the exploration of new topics. Family members were also asked a brief series of demographic questions. Interviews were conducted in participants’ homes (n = 16), at an alternate location (n = 3), or over the phone (n = 1). Interviews ranged from 23 to 133 minutes, with an average length of 65 minutes.

In addition to formal consent, ongoing process consent was practiced throughout the interview (Cridland et al., 2016; Dewing, 2007). This involved seeking ongoing verbal consent, restating the study aims when necessary, and looking for signs of discomfort (Cridland et al., 2016; Digby et al., 2016). Some participants with dementia became emotional while discussing their diagnosis and the impact of dementia on their lives. In a few instances, participants expressed frustration after having trouble communicating or recalling events. When signs of distress were observed, Novek offered to pause or change topics. All participants expressed their wish to continue. To help ensure a positive experience, interviews ended with questions that focused on strengths and supports, and by engaging in informal conversation.

Interviews with providers were tailored for each participant, depending on their expertise. Providers were asked about the strengths and limitations of services, their experiences of the diagnostic process, and the factors that affect diagnostic and post-diagnosis care. Interviews were conducted in participants’ offices (n = 13) or over the phone (n = 3) and lasted between 22 and 103 minutes, with an average length of 54 minutes. All interviews were audio-recorded and transcribed by a professional transcriptionist.

Data Analysis

The data set was studied using a combination of inductive, thematic analysis (Braun & Clarke, 2006), as well as a focused analysis of the diagnostic process using the candidacy framework. All transcripts were read by both authors to identify broad themes and patterns in the data. Next, Novek coded all transcripts and fieldnotes to generate a preliminary list of codes. These codes were reviewed, refined, and organized into a coding scheme. After completing this phase of the analysis, we determined that the candidacy framework (Dixon-Woods et al., 2006) was well suited to analyzing the diagnostic issues described in the data set. We then returned to the data set using the candidacy framework as a conceptual lens to focus and refine our analysis of the diagnostic process. We compared new themes and interpretations with previous codes and integrated them into the coding scheme. The coding scheme was further refined using the dimensions of the candidacy framework (see Table 2). The subthemes, presented under each dimension of candidacy, were developed through an iterative process of inductive thematic coding and deductive theoretical analysis (Braun & Clarke, 2006). Both authors met throughout the analytic process to review themes and codes. Once the coding scheme was finalized, Novek coded the data set using NVivo 11 software.

Table 2.

Dimensions of Candidacy and Corresponding Subthemes.

Dimensions	Subthemes
Identification	• Making sense of diverse symptoms • Interpreting signs of dementia at midlife
Navigation	• The diagnostic maze • Navigation as work
Permeability of services	• The age criterion • Atypical patients
Appearances and adjudications	• Presenting dementia at midlife • Adjudicating complex and atypical presentations • Diagnostic communication, discomfort, and uncertainty
Offers and resistance	• The interpersonal dimensions of health interactions
Operating conditions	• A fragmented system

Results

The following sections present our findings for each dimension of the candidacy framework and corresponding subthemes (Table 2).

Identification

According to Dixon-Woods et al. (2006), accessing health care begins with identifying a health issue that requires medical attention. Our analysis indicates that the process of identifying the symptoms of dementia was complicated by the diverse manifestations of the condition among young individuals. Assumptions about dementia as a disease of old age also affected how participants interpreted symptoms, and ultimately hindered help-seeking.

Making sense of diverse symptoms

Participants described a wide range of early symptoms that led to diverse health care trajectories, including stress, relationship problems, personality changes, communication issues, apathy, memory problems, anxiety, paranoia, hearing problems, disorientation, and balance issues. While some symptoms signaled a cognitive issue, such as memory or word finding problems, others were difficult to interpret:

She just didn’t seem right, but nobody really knew that she had dementia or what she had. So it was kind of confusing . . . because she had balance issues . . . there were hearing issues, she had a lot of issues that just didn’t—and she had some memory issues but everybody has memory issues. (Spouse, male)

We noticed things, I noticed, just some peculiar things for her . . . maybe she wasn’t as interested in cooking as she used to be. [My wife] has always been a fantastic cook and a really active mother. (Spouse, male)

Psychological symptoms such as depression, anxiety, or apathy are common in young onset dementia (Bakker et al., 2014; Carter et al., 2018). When these symptoms are present early on, they may be misinterpreted as signs of psychiatric illness. In the following quote, a participant describes how she interpreted her husband’s initial symptoms:

We honestly thought he had a nervous breakdown. That’s what we thought, he lost his job and that meant everything to him . . . It came across as a nervous breakdown and I would like people to understand that . . . I mean we thought that for at least a year plus, you know? It was quite a long while before we actually realized there’s something else wrong here. (Spouse, female)

Interpreting signs of dementia at midlife

Dementia at midlife is unexpected and most participants did not consider the possibility of dementia until it was mentioned by a health professional. While the symptoms of dementia in older adults are often attributed to aging (Koehn et al., 2016; Perry-Young et al., 2018), participants in our study lacked a framework for understanding the changes they observed. Several participants expressed that it did not occur to them that their spouse could have dementia:

I noticed things but I kind of shrugged them off thinking it was something else, just, exhausted from work or he had too many drinks . . . it didn’t cross my mind that he could have dementia. (Spouse, female)

I could not believe it would be [dementia] because he was too young and because that just couldn’t happen to us. (Spouse, female)

In three families, the person affected by dementia raised concerns about their cognition to their spouse and health care provider. Other participants described a more muddled process: concerns were noticed, occasionally discussed, but not understood as possible signs of dementia. In common with previous research on young onset dementia (van Vliet et al., 2011), early symptoms were often misinterpreted, denied, or concealed:

One night she was coming to bed and she was crying and I said, What’s the matter? . . . She had said to me, I think I’m losing my mind; and I said, No, I said, You know-, it doesn’t sound very sympathetic but I said, Oh no you’re not, you must be just having menopause . . . That was one way to say, “Okay it must be that, don’t worry about it.” (Spouse, male)

Problems encountered at work indicated that something was wrong and motivated participants to seek help. Some reached a diagnosis of mild cognitive impairment or dementia before leaving the workforce. Others were laid off, pressured to retire, or went on leave without determining the cause of their problems at work. Without an understanding of their condition, some individuals continued to seek employment and eventually lost multiple jobs.

In eight out of the 12 families, the family member with dementia was working when their first symptoms manifested. They all experienced issues in the workplace that eventually led them to stop working. These issues signaled that something was wrong and motivated participants to seek medical attention:

He was having difficulties at work, couldn’t perform certain functions, couldn’t follow through with things, he was working in sales. Sometimes he got confused with sending emails and kind of combined emails that weren’t relevant to what he was answering, just things that they were starting to notice at the office. And then they talked to me about it and then we started . . . setting up doctors’ appointments. (Spouse, female)

Navigation

Navigation refers to the process through which people find and gain access to services. Dixon-Woods et al. (2006) point out that accomplishing navigation work requires knowledge, skills, and resources. The level of navigation work required of patients is also a reflection of the complexity of the health care environment. Our findings show that participants’ paths to a diagnosis of young onset dementia often resembled a maze and required difficult and time-consuming navigation work.

The diagnostic maze

Peel and Harding (2014) used the metaphor “a maze” to signify the complexity, confusion, and dead ends that people encountered in their interactions with dementia services in Britain. Similarly, participants in the present study described meandering pathways toward diagnosis, complicated by misdiagnoses, long wait-times, and a lack of coordination. Providers indicated that there is no formalized referral pathway and expressed concern that patients are referred to specialists with inadequate expertise:

I think that family [doctors] might recognize something’s going on, but . . . don’t know who they should refer to . . . Some family [doctors] just refer to their favourite neurologists who may or may not have any kind of specialty or expertise in dementia, or a psychiatrist, or to a geriatrician. (Provider)

Depending on their initial symptoms, participants were referred to different medical specialties, leading to different diagnostic pathways. Without a multidisciplinary process, participants were referred to one specialist after another, waiting for long periods of time between each consultation. As one provider put it,

[Ideally] you’d probably start off with a neurologist to make sure you don’t have sort of a treatable neurologic disease. Second is to be seen by a psychiatrist to make sure you don’t have a treatable psychiatric illness . . . and then probably a neuropsychologist . . . So probably right now you’d need to make three stops, three referrals, three different waiting lists, so it’s really . . . cumbersome. (Provider)

Participants described the referral process as disjointed, prolonged, and profoundly stressful:

They say we’d like you to go do this test and then you would go to that test and then you would go to another test, many tests unfortunately . . . it’s a very arduous and slow process. (Participant living with dementia, male)

Yeah 2010 is when we started down this road . . . and it was the end of 2014 when we actually got the diagnosis. So it was a long four years, it was harsh . . . I don’t even know how we made it through. (Spouse, female)

Navigation as work

For families, navigating fragmented services posed multiple challenges and difficult navigation work. In line with previous research on dementia (Koehn et al., 2016), participants with dementia relied on family members to navigate the diagnostic process. In some families, the person with dementia initially accessed services on their own, but over time, navigation work shifted to their spouses and other family members.

Participants’ navigation efforts were hampered by a lack of information about available services and specialists. For example, one participant discussed her frustration with the lack of information she received about services for her husband:

I didn’t know what was [out] there, it felt like nothing; like it just felt like this bad thing was happening to us . . . so more information at the outset when we were looking for a diagnosis would have been nice. (Spouse, female)

The level of navigation work required to access a diagnosis placed a considerable burden on families and added to an already stressful situation. For example, while discussing his wife’s lengthy diagnostic process, one participant reflected on his decision not to pursue an alternative specialist:

Maybe I should’ve gone to a different doctor or a different neurologist and tried to find some different support if you’re unhappy with one source. But I didn’t do that because all this takes . . . energy and stress and time and emotions. (Spouse, male)

Permeability of Services

Dixon-Woods et al. (2005) introduced the concept of permeability to describe the degree to which services are inclusive or restrictive. More permeable services have few or no entry requirements such as emergency departments or walk-in clinics, while less permeable services demand more qualifications such as referrals. The services examined here were characterized by low permeability due to explicit age-restrictions as well as tacit perceptions of younger individuals as atypical patients with complex and unique needs.

The age criterion

Consistent with previous studies (Cations et al., 2017; World Health Organization, 2012), age-restrictions for dementia services were common, generating systemic barriers for people with young onset dementia. Age-restrictions were often used by services that were geared toward older adults, but were not dementia-specific. For example, Winnipeg has several geriatric clinics and assessment services for people above 65 years that diagnose and treat people with dementia. Some participants accessed these resources as soon as they turned 65. For example, one participant’s wife was diagnosed with young onset Alzheimer’s disease after she turned 65 and was able to access a geriatric mental health service:

We were told we could not access it until she’s 65, but I didn’t call until she was after 65 anyway . . . But if that kind of intervention and support had been there earlier it might’ve been more helpful. (Spouse, male)

Atypical patients

In addition to explicit criteria, such as age-restrictions, services may also rely on tacit assumptions about the ideal user, that is, “someone who uses services precisely in the way they are intended, for precisely the problems providers have identified the services as serving” (Dixon-Woods et al., 2005: 287). Interviews with providers revealed that people with young onset dementia were often perceived as atypical users whose clinical presentation and care needs fall outside of their expertise.

Providers tended to describe people with young onset dementia as different than their typical patients, and some felt ill-equipped to treat younger patients. They were generally described as clinically more complex, with higher care needs. Providers who primarily treat older adults emphasized the differences between patients with young onset dementia and geriatric patients:

The population that we define ourselves as looking after in geriatrics is frail older people, usually with multi-morbidity and often with cognitive impairment. So there certainly are people under age 65 that have that, but they are . . . still not necessarily similar to our 85-year-old people. (Provider)

Providers also pointed out the extra work involved with younger patients such as employment insurance applications:

You have to have a diagnosis that will satisfy the insurance company and will keep the person safe from doing potentially injurious things at work. If you just saw people over 65 you wouldn’t have to deal with any of that. It is a lot more trouble with people under 65 if you’re a geriatric focused person. (Provider)

A few participants emphasized the rarity of young onset dementia, including among patients with cognitive complaints, and suggested it was problematic for dementia services to admit a patient population who are unlikely to have dementia. As one provider put it, “Whatever it is they’ve got is not what you’re good at helping people with.” A provider from another service disagreed with that position and saw no problem assessing younger people who do not have dementia:

The majority of people that come to me in that age category with that concern do not have a primary neurodegenerative disease. It doesn’t mean I don’t investigate them anyway, I talk to them, I think about their problem and decide. (Provider)

Appearances and Adjudications

Viewed from the lens of the candidacy framework, obtaining a diagnosis of young onset dementia can be understood as a negotiated process, situated within the social context of clinical interactions. Dixon-Woods et al. (2006) delineate two dimensions of these encounters: appearances and adjudications. Appearances refers to the ways in which patients and caregivers present their health issue and assert a claim for medical attention. Adjudication refers to health professionals’ judgments regarding an individual’s candidacy for care. The present findings show that people with young onset dementia and their family members often felt their symptoms were discounted by health care providers due to their age or appearance. Providers, however, attributed diagnostic delays to clinical complexity and atypical presentations. Moreover, diagnostic communication was complicated because some providers, particularly those who primarily treat older adults, were less comfortable disclosing a diagnosis of dementia to younger individuals.

Presenting dementia at midlife

Participants commonly felt that their (or their family member’s) symptoms were discounted, or misinterpreted, by health care providers. Several participants raised concerns about their cognition or memory to their family physician on multiple occasions before they were referred to a specialist:

Over the course of the year she was speaking to her doctor about memory issues. I can remember her saying that her doctor had told her that it was probably just stress, that . . . it would be helpful if she had a glass of wine or a drink a night. (Spouse, male)

Participants often felt that their (or their family member’s) age and appearance affected how they were perceived by health care professionals. Participants identified dressing neatly or professionally, being employed, and the appearance of physical fitness as factors that affected how they were perceived by providers. For example, one participant commented that his age affected the length of time it took for providers to consider he might have dementia:

The time that it takes someone to get in their head that possibly this is an individual that has something, that was a very, very frustrating time in my life . . . The dementia, Alzheimer’s, the usual diseases and things like that do not come to the forehead of doctors . . . . Not when you’re young. (Participant living with dementia, male)

Another participant felt that her husband’s neurologist failed to recognize his condition in part due to her husband’s age and how he dressed: “[His neurologist] looked at [my husband] . . . ‘He looks good. He looks like he’s clean, he looks like he’s neat, he does not present like Alzheimer’s therefore he does not have Alzheimer’s’” (spouse, female).

Family members also commented on the performance of the person with dementia during clinical encounters, and the ways that they concealed or showcased their symptoms. Some participants felt that their family member attempted to hide or downplay their symptoms:

I was really sure that something was wrong. He went to a doctor . . . I didn’t go with him because I was working, I should’ve gone with him. He told them there was nothing wrong and he could just carry on. (Spouse, female)

Both family members and providers highlighted the role that family members play during clinical interactions. Participants felt it was critical for family members to be present to relay information, act as a support, and to interpret health information. For example, one participant, whose husband was living with Alzheimer’s disease, described how she advocated for tests and referrals in response to what she perceived as inaction:

I said, “There’s got to be something more we could do here” . . . I wanted a diagnosis because financially I have to do something here, I have to—if we’re gonna lose a job . . . I need a diagnosis here, so that’s what I pushed for. (Spouse, female)

Providers also valued having access to knowledgeable family members who can provide information about their patients. One provider described the challenges of assessing a patient with young onset dementia who did not have close family members to accompany her:

She was single and so didn’t have somebody that was with her all the time that could come and be the collateral for me . . . and her parents . . . I didn’t find them always right on the ball so they weren’t as helpful as someone [who] knows the person really well and says this is what I’m seeing, because a person with a memory impairment can’t really report all those things. (Provider)

Adjudicating complex and atypical presentations

When asked about diagnostic challenges, health care providers emphasized the clinical complexity of assessing young onset dementia. Providers referred to the broad differential diagnosis, the heterogeneity of clinical presentations, and the limitations of diagnostic tools. Several providers pointed out that patients with young onset dementia are more likely to present with conditions and symptoms that differ from the classic presentation of Alzheimer’s disease, which may lead to misdiagnoses or diagnostic delays:

Younger people often have atypical dementias, so those things may come across as just the person being a bit strange or depressed . . . because sometimes it’s a more psychiatric manifestation to begin with, and that can last for a few years. So the person could be going through this kind of phase and they are treated for psychiatric stuff. (Provider)

If it’s a frontal-temporal dementia and it’s a lot of behavioural variant symptoms, so they’re very disinhibited, or being inappropriate, they’ll either end up in the emergency room diagnosed as manic or psychotic or the family doc will be trying medications. . . it’s not high on anyone’s radar . . . the index of suspicion isn’t there. (Provider)

Providers also emphasized the clinical nature of the diagnostic process and the limitations of diagnostic tests: “There’s no lab test where we can say, ‘We’ll order this test and if the number is five, you’ve got dementia’. There’s nothing like that, it’s a clinical diagnosis based on everything else” (provider).

Diagnostic communication, discomfort, and uncertainty

For many families, the uncertainty surrounding the dementia diagnosis was magnified by the way the diagnosis was communicated. Several participants described their health care providers as vague or uncomfortable discussing the diagnosis:

I remember . . . having to press [the neurologist] a little bit because up until that point, it was more sort of around the diagnosis instead of actually naming it. (Spouse, male)

Nobody ever said . . . this is what you have, this is the prognosis, there was none of that. It was like we’ll do these tests and the neurologist did say that the damage . . . is permanent and the best that we can hope for is that it won’t get any worse. (Spouse, female)

Even when providers used explicit terminology, participants were often left with the sense that the diagnosis was provisional. For example, one participant, when describing his wife’s diagnosis, noted her neurologist’s stated lack of expertise in young onset dementia: “He said that he doesn’t specialize in this but from what he can see it looked like . . . early onset Alzheimer’s disease” (spouse, male). Participants who received diagnoses from one-off consultation often expressed uncertainty around the diagnosis, especially when it conflicted with the opinions of other providers.

By contrast, some participants felt that the diagnosis was delivered with clarity and a sense of certainty. For example, one participant described how her husband’s specialist delivered the diagnosis of Alzheimer’s disease: “I could see that when he gave us the news he wasn’t happy about giving us the news, but it was the reality and that’s a hard thing to do” (spouse, female).

Given the impact of the diagnosis, participants stressed the importance of establishing rapport, communicating sensitively, and conveying empathy:

If he had just said, “You know, I’m sorry I’m gonna have to give you some bad news here, it really looks from this test like you have either Alzheimer’s or some sort of dementia,” but it wasn’t like that it was just like, Well you’ve got Alzheimer’s, like as if we had wasted his time or something. (Spouse, female)

Providers felt it was important to communicate a diagnosis as soon as they reached a determination. However, some acknowledged that they were more cautious establishing and communicating a diagnosis to younger individuals:

The process is similar, but you are a little more careful about saying—you might be a little slower to use the word dementia. You might kind of couch it and say well let’s watch how this thing goes and bring you back three months or six months. (Provider)

There’s a huge impact of saying, “I think this might be dementia.” So you have to . . . be careful not to dump something like that on someone prematurely . . . At the same time people have a right to know. (Provider)

Providers emphasized the profound impact of a diagnosis of young onset dementia on the patients and families and described diagnostic disclosure as emotionally challenging:

It’s usually a little bit more of a shock . . . Emotionally it’s harder for everybody and sometimes it can be a lot more of a challenge. (Provider)

I find it much more emotionally difficult. You know, they have nine-year-old children and it’s just altogether a different situation than, you know, an 85-year-old. (Provider)

Offers and Resistance

The category offers and resistance (Dixon-Woods et al., 2006) refers to the interventions or services offered (or not offered) following adjudications of candidacy, as well as patients’ decisions to accept or decline such offers. The care that people require following a diagnosis of dementia increases over time and spans health and social care services. Here we focus specifically on the care that is offered, and not offered, in conjunction with a diagnosis of dementia. Our findings show that offers of post-diagnostic support were limited, and that the patient–provider relationship influenced participants’ decisions to accept or refuse offers of care.

Participants reported receiving various offers of care such as information, coping suggestions, medication, follow-up appointments, and referrals to community supports. For most participants, however, offers of care were limited. Some were diagnosed without any offer of follow-up, and several felt that their provider did not take time to explain the diagnosis, to help them cope with the news, or to connect them to supports:

It was terrible, I didn’t like him from the get-go . . . He may be very smart and he might know his scans, but as far as dealing with any of the emotions and stuff . . . he didn’t deal with that at all. Not at all. (Spouse, female)

There’s no cure for any of this stuff, so I think for many [doctors] they’ve kind of washed their hands and go onto the next. The reality is people still need to live with dementia. As we walk out of their offices we’re not dead . . . it doesn’t mean that you can’t still live your life to the best that you can, and there’s supports that can assist you. There still needs to be hope that’s given. (Spouse, male)

Participants diagnosed with dementia emphasized the emotional impact of their diagnosis, and the challenge of processing and accepting the news:

[Receiving the diagnosis] was a little rough at first. It took a while for me to realize that, yeah I do have this . . . Now I’m more or less comfortable with it . . . a couple years ago I might not be. You know, especially when I first got the diagnosis . . . it was uncomfortable saying it . . . The best advice I think would be is just not trying to deny it . . . There’s no use trying to hide it. (Participant living with dementia, male)

I’m one of those guys who likes to win and I’m losing this battle and it’s hard for me to accept it. And it’s frustrating to accept it but somewhere down the line I’m going to have to accept it. (Participant living with dementia, male)

Providers emphasized the importance of connecting patients and families to supports and helping them prepare for the future. Given the lack of effective treatments, however, some questioned their ability to offer meaningful care:

Unfortunately the downside is there isn’t really much to do other than put a label on things and to plan for the future. (Provider)

I see them longer term, but unfortunately as you may know it is not a whole lot we have to offer anybody with dementia. (Provider)

The interpersonal dimensions of health interactions

Consistent with previous research (Koehn et al., 2016; Portacolone et al., 2020), we further found that participants who felt a lack of rapport or empathy from their health care providers were likely to resist offers of care such as medication or follow-up appointments:

[The doctor] said “I can be your neurologist,” and I thought [my wife’s] not gonna come back to see you . . . what’s the point? Like what is it that he could do for us that’s gonna actually help us? (Spouse, male)

When I would ask questions, he would always say things like, “Ask your family doctor.” He didn’t want to answer anything. And he was quite demeaning, he was not good at all . . . So I said to our family doctor . . . there’s no benefit in us seeing him anymore. (Spouse, female)

Conversely, participants valued providers who took time to discuss their concerns and offered suggestions for living well with dementia. One participant, for example, recounted advice she received from her family doctor: “I think the best thing was, maybe it was that doctor that said . . . ‘Your job is to be happy’. And so I’ve kind of used that since then” (participant living with dementia, female).

Although many participants felt their health care providers had little to offer, their accounts underscored the importance of establishing positive relationships with providers. The level of confidence participants placed in their providers informed how they interpreted diagnostic communication and influenced their decisions to accept or resist offers of care.

Operating Conditions

This category refers to the organizational structures, availability of resources, and policies that affect the process of attaining candidacy in a locality (Dixon-Woods et al., 2006). Our analysis suggests that fragmentation, age-restrictions, and resource limitations influenced the process of pursuing and delivering a diagnosis of young onset dementia.

A fragmented system

Assessment and diagnostic services for young onset dementia were delivered by a patchwork of services spanning multiple specialties. Although we identified knowledgeable specialists, the absence of a designated clinic or clear referral pathway jeopardized access to these specialists. As one participant put it, “In terms of there being . . . a clear pathway to getting help, that doesn’t exist” (provider). For providers, working in silos constrained their ability to diagnose complex cases and provide meaningful supports. Age-restrictions created additional barriers, as a significant portion of dementia services were not open to people below 65 years.

Participants also connected service gaps to the limited resources and systematic problems affecting dementia care overall. For example, providers often referred to the constraints of their practice, the scarcity of health care providers, and the limitations of health and social care:

There is a big lack of dementia care in general, like quite a stunning lack of it. And one of the issues is that there are very few services for younger people with dementia. That said it’s not a huge population. But for them it’s important obviously. (Provider)

Geriatric psychiatry, in my opinion, there’s very few of us and everyone’s spread very thinly under different programs. (Provider)

In this context, some providers questioned whether services for a niche population could compete for attention and resources:

Right now it is a big hole. I think all of us acknowledge it’s a hole, but it’s a hole amongst a lot of issues in dementia care. (Provider)

It’s not that the resources for geriatric care are so generous that we can just say, “Oh well, we’ll look after all the young people [too].” (Provider)

Discussion

Seen through the lens of the candidacy framework, our analysis indicates that the diagnosis of young onset dementia is a shifting and negotiated process involving patients, family members, and multiple providers. For most participants, the diagnosis evolved from an initial diagnosis of cognitive impairment, to dementia, and eventually a dementia subtype. Participants with dementia and family members played an active role in negotiating this process, from identifying changes, to presenting (or concealing) symptoms, advocating for tests and referrals, and integrating information from multiple providers. The interpersonal dimensions of patient–provider relationships were also significant, affecting how participants interpreted diagnostic information, and their acceptance or rejection of offers of care.

In line with Peel and Harding’s (2014) characterization of dementia services, we found that participants’ diagnostic pathways were confusing and maze-like, imposing onerous navigation work on patients and families. Participants’ reliance on family members to navigate the diagnostic process raises the possibility that people with fewer family supports and resources face additional barriers to care. The duration of the diagnostic process and the complexity of navigation work created barriers for people with dementia and may have constrained their participation in this facet of their health care.

A key finding of this study is the critical role that age plays in how individuals with cognitive concerns are perceived and categorized. Dixon-Woods et al. (2005) posit that clinicians rely on a repertoire of routine judgments that categorize people based on certain traits. How individuals are categorized affects how their claims to candidacy are adjudicated. Many participants, for example, felt that their age, appearance, and symptoms affected how they (or their family member) were perceived by providers. Several participants expressed frustration that their symptoms were not recognized as possible signs of dementia.

Providers expressed ambivalence toward age categorizations. On one hand, providers pointed to the arbitrary nature of age cut-offs. On the other hand, they characterized young onset dementia as distinct from dementia in later life, requiring a different diagnostic approach, tools, and specialist expertise. While all providers affirmed the importance of diagnostic disclosure, some acknowledged they are less comfortable disclosing a diagnosis to younger individuals. Several family participants also remarked on their providers’ discomfort discussing the diagnosis. These findings suggest that for people with young onset dementia, candidacy may be compromised by providers’ discomfort communicating a diagnosis of dementia to younger individuals. Improving access to a team of providers with expertise in young onset dementia may address this issue.

At the organizational level, age categorizations created structural barriers, excluding people with young onset dementia from services designated for older adults. This process occurred through explicit age-restrictions as well as tacit perceptions of people with young onset dementia as atypical patients who are not well served by mainstream dementia services. Removing age-restrictions for dementia services, particularly when alternative options are unavailable, is necessary to achieve equitable access to care. The boundaries that transect heath services and professions further complicated access. Young onset dementia is not the purview of a single discipline or speciality. Without a multidisciplinary service to facilitate collaboration, the assessment process was fragmented, and diagnostic information was delivered in a piecemeal fashion. The boundaries between medical and social care created further divisions, and many participants expressed frustration that their providers failed to connect them to local supports.

Our analysis also indicates that the process of obtaining a diagnosis of young onset dementia was influenced by prevailing assumptions about dementia as a disease of old age associated with memory loss. Misperceptions of dementia complicated the process of symptom recognition and help-seeking and contributed to misdiagnoses and diagnostic delays. The lack of recognition of young onset dementia was also evident in the structure and organization of local health services, exemplified by the widespread use of age-restrictions for dementia-related services. These findings underscore the need to promote awareness of young onset dementia among the public, providers, and policy makers.

Our findings point toward several additional recommendations. The fragmented diagnostic experiences described by participants in the present study lend support to the growing call for specialist young onset dementia services (Carter et al., 2018; Draper et al., 2016; O’Malley et al., 2019). Coordinated, multidisciplinary services have the potential to streamline the diagnostic process and to provide continuity of care post-diagnosis (Draper et al., 2016; Williams et al., 2001). Access to a dedicated team could reduce the level of navigation work imposed on patients and families and could also provide support to practitioners who are less comfortable diagnosing younger patients. Finally, the social, psychological, and financial challenges participants experienced provide further evidence of the need for family-centered supports during the diagnostic process and after (Masterson-Algar & Williams, 2020; Rabanal et al., 2018).

The candidacy framework facilitated a critical examination of the social-interactional and organizational factors that affect access to a diagnosis. Our analysis also revealed some potential limitations of the framework. Chase et al. (2017) note that the framework overlooks the power dynamics that shape health care interactions. In our study, participants’ comments around feeling invalidated indicate a sense of powerlessness during clinical interactions. For people who have dementia, their power to assert candidacy may be additionally compromised by cognitive impairment, stigma, and the complexity of navigation work. Candidacy constraints may also reflect the lack of power afforded to people with dementia to influence services that affect them.

Chase et al. (2017) and Mackenzie et al. (2013) further point out that the framework focuses on micro-social and organizational level factors and does not explicitly incorporate the macro-structural factors that influence health interactions. We found that sociocultural perceptions of dementia influenced the process of pursuing and adjudicating candidacy. The framework, therefore, would benefit from further explicating the social-contextual factors that affect candidacy and accounting for the power inequities underpinning health practice and policy.

Strengths and Limitations

There are several limitations of this study that warrant consideration. First, the sample lacked diversity and is not representative of the population living with young onset dementia or their families. Bartlett and O’Conner (2010) point out the tendency among researchers to conceptualize people with dementia as a homogeneous group, overlooking the diversity of dementia subtypes, as well as the social identities and inequalities that shape individual experiences. Future research with larger and more diverse samples is required to examine the unique diagnostic experiences associated with specific dementia subtypes and to better understand the experiences of groups who face intersecting barriers to dementia care.

There is growing recognition that individuals with dementia can actively participate in qualitative research and contribute critical perspectives on the lived experience of dementia (Clarke et al., 2018; Cridland et al., 2016; Hellström et al., 2007). Moreover, broader inclusion supports access to the potential benefits of research participation such as the opportunity to contribute to research and service development, feeling valued and understood, being perceived as capable, and embracing a positive dementia identity (Clarke et al., 2018; Cridland et al., 2016; Hellström et al., 2007). In the present study, participants with dementia provided rich data on their experiences. However, their discussion of diagnostic issues was limited compared with other topics. Recruiting participants during or soon after the diagnosis may provide a better opportunity for participants with dementia to speak about the diagnostic experience. Some participants became emotional during conversations about their diagnosis or frustrated when they had trouble communicating. Paying attention to signs of distress, responding empathically, and offering breaks helped to ensure participants’ well-being. Despite the sensitive nature of interview, all participants chose to complete it, and several noted they valued the opportunity to share their perspectives and contribute to research.

All participants with dementia were interviewed in the presence of their spouse. Offering joint interviews facilitated the inclusion of participants with young onset dementia who would have been uncomfortable taking part on their own. Spouses also encouraged participation by providing support, offering prompts, and filling in memory or communication gaps. While this method offered key advantages, it also added complexities to the research process. Some participants, for example, looked to their spouses to confirm their answers, or repeated back their spouse’s responses. Managing these imbalances required paying attention to interview dynamics, checking in with both participants and ensuring that each partner had an opportunity to respond.

Conclusion

Our findings suggest that the diagnosis of young onset dementia is a multifaceted, negotiated process involving patients, family members, and health care providers. Applying the candidacy framework generated new insights into how a diagnosis of young onset dementia is pursued and delivered, and the factors that facilitate or hinder this process. In the absence of dedicated services, participants faced a complex array of barriers. Assumptions about age and dementia affected how participants interpreted their symptoms, how they presented to services, and how they, in turn, were perceived by providers. At the organizational level, age-restrictions, fragmentation, and unclear referral pathways further complicated the diagnostic process. Participants’ interactions with providers and health services ultimately influenced their interpretation of the diagnosis and willingness to accept post-diagnostic care.

Receiving a diagnosis of dementia is a profoundly difficult and impactful experience. It also represents a necessary step toward understanding the condition, accessing care and benefits, and adapting to life with a progressive disease. Without a clear diagnostic pathway, the process was often prolonged, fragmented, and fraught with uncertainty. For families, navigating a lengthy diagnostic process was stressful and left them financially vulnerable. Their experiences highlight the importance of improving access to young onset dementia assessment services and ensuring that diagnostic information is delivered with clarity, compassion, and in tandem with supports.

Footnotes

Declaration of Conflicting Interests

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

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Support was received from the Canadian Institutes of Health Research (funding reference no. GSD-140338), the Alzheimer Society of Manitoba and Research Manitoba.

ORCID iD

Sheila Novek

Author Biographies

Sheila Novek is a PhD candidate in the Department of Community Health Sciences, Rady College of Medicine, at the University of Manitoba. Her research interests focus on care and supports for older adults and people living with dementia, and the methods for conducting qualitative research involving people with dementia.

Verena Menec is a professor in the Department of Community Health Sciences, Rady College of Medicine, at the University of Manitoba. Her main research interests lie in the areas of healthy aging, determinants of healthy aging, social isolation and loneliness, and age-friendly communities as a way to promote healthy aging.

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