Dementia Specialty Care Clinicians’ Perspectives on Their Role in the Dementia Diagnostic Process and Diagnostic Disclosure

Abstract

Background

Delivering a diagnosis of Alzheimer’s disease and related dementias (ADRD) can be challenging not just for patients and families, but also for clinicians. Our objective was to understand dementia specialty care clinicians’ perspectives on their role in diagnosis and diagnostic disclosure in dementia.

Methods

Qualitative interviews with clinicians from a specialty tertiary dementia care center focused on practices, challenges, and opportunities addressing patient and caregiver needs in dementia. Data was analyzed by an interdisciplinary team using thematic analysis.

Results

The 16 participants included behavioral neurologists, social workers, neuropsychologists, and nurses. Themes included the value of providing an accurate diagnosis, the timing and challenges of delivering a diagnosis, the central focus on diagnosis alongside the need for more education on care management, and the role of the interdisciplinary team.

Discussion

We identified areas for improvement and strengths that can be built upon or adapted to other settings, including providing clinicians in specialty and primary care settings more guidance and support when diagnostic challenges arise, strengthening interdisciplinary teamwork, and making dementia diagnosis and care more accessible.

Background

Receiving an accurate diagnosis of Alzheimer’s disease and related dementias (ADRD) is critical because it can help inform prognosis, mitigate against inappropriate medication use, and enable patients and their families to plan for and make decisions about the future.^1-3 Moreover, with the emergence of disease-modifying therapies, specific diagnoses will be crucial to help guide eligibility for new FDA-approved treatments. ⁴ Patients with cognitive concerns may reach a dementia care specialist after experiencing missed and delayed diagnoses in other settings, such as primary care.^5-7 Many experience a challenging and convoluted diagnostic process that involves multiple referrals, tests, and misdiagnoses.^8,9 Due to these challenges, dementia care specialty centers play an important role in the diagnosis and care of people with ADRD. ¹⁰ One of the many goals of dementia care specialty centers is to make or confirm a diagnosis. ¹¹ The diagnostic process in dementia care specialty centers is typically intensive, involving a series of exams that include elicitation of the patient’s history, cognitive testing, imaging, and labs, as well as biomarkers for degenerative diseases, to determine dementia subtype and receive a diagnosis. ¹¹ At these centers, clinicians first determine if there is impairment and its extent, and then use a series of tests and exams to determine the underlying neurodegenerative disease that may be causing dementia. ¹¹

There has been a wealth of work on the experience of receiving a diagnosis from the perspective of patients and caregivers. Prior studies have identified the challenges that exist in the ways patients and families experience the diagnostic process, their communication about diagnosis with both primary care clinicians and specialists, and challenges with how the diagnosis is disclosed.^8,9 Much of the literature on barriers to diagnosing dementia focuses on the primary care setting, with less focus on specialty settings.^12-17 Delivering a diagnosis for a serious health condition like ADRD can be challenging not just for patients and families, but also for clinicians. ¹⁸ However, little is known about dementia specialty care clinicians’ perspectives on experiences, challenges, and opportunities when diagnosing ADRD.

In this paper, we used qualitative methods to elucidate dementia specialty care clinicians’ perspectives on the process of diagnosis and diagnostic disclosure. Given their important role in identifying a cognitive diagnosis and delivering this diagnosis, our objective was to understand areas for improvement, as well as to identify strengths that can be built upon or adapted to other settings, such as primary care. Furthermore, primary care and community neurology settings are both likely to play a growing role in ADRD diagnosis as more people seek diagnostic services for cognitive impairment due to the new disease-modifying treatments and biomarker-based tests for disease. ⁴ Therefore, understanding the perspectives and experiences of those working in memory care settings can provide important insights about areas of focus for other disciplines.

Methods

Design and Setting

We conducted a qualitative study ¹⁹ with dementia specialty care team members at a tertiary specialty dementia center within an academic medical setting in a Northern California city from November 2018 – May 2019. This center is also involved in extensive research in ADRD. The center includes 30 neurologists with training in behavioral neurology or neuropsychiatry, and in 2020 saw 2344 unique patients. Approximately 4% of patients seen identified as African American, 7% as Hispanic/Latino, and 10% as Chinese. Our research was part of a larger study examining challenges and opportunities meeting the palliative care needs of people with dementia and their families. We interviewed participants about practice challenges and opportunities addressing patients’ dementia care needs. This manuscript specifically examines clinician perspectives on the diagnostic process and delivering a diagnosis. The study was approved by the Institutional Review Board at the University of California, San Francisco. Qualitative data collection and reporting is consistent with Consolidated Criteria for Reporting Qualitative Research (COREQ) standards.

Participants and Recruitment

We recruited participants using purposive sampling; participants were selected to represent a range of disciplines and experience. We aimed to recruit between 15-20 participants We reached out to 18 potential participants using a Dear Colleague letter that introduced the goals of the study. 16 completed informed consent and participated in a 60-minute in-person interview.

Data Collection

A multidisciplinary team (social sciences, neurology, geriatrics, palliative medicine) developed and piloted the interview guide. The first author, a PhD-trained medical anthropologist, conducted the interviews in person. Interview domains included: (1) clinician perspectives on dementia care needs of people living with dementia (PLWD) and their families; (2) current practices addressing dementia care needs; (3) challenges and barriers to addressing dementia care needs; and (4) opportunities for improvement. This manuscript reports a sub-analysis of the data focused on the topic of diagnosis and diagnostic disclosure. A memo was created after each interview that summarized key themes and reflections.

Data Analysis

All interviews were recorded, transcribed, and entered into ATLAS.ti, a qualitative data analysis software. ²⁰ During data collection, the multidisciplinary team began to familiarize themselves with the data through regular meetings to review memos and excerpts from transcripts. The team developed deductive codes based on these meetings and goals of the study which formed the foundation of the codebook. The first author (ABS) then conducted both deductive and inductive coding of the data, using the codebook for deductive codes, and adding inductive codes as they emerged. The multidisciplinary team discussed and iteratively refined the codebook as codes were added. Senior author (CSR) double-coded 20% of the interviews using the codebook. ABS and CSR met regularly to discuss discrepancies in coding until agreement was reached. They reviewed and re-coded transcripts based on emergent codes. The theme of diagnosis and the diagnostic process emerged as a central topic within the codebook. For this paper, code reports for “diagnosis,” “diagnostic process,” and “diagnostic delivery” were abstracted and the first and senior author reviewed quotations and used this abstracted data and codes from the codebook to develop themes from the coded data. ²¹ They found agreement in how they defined and characterized the different themes related to the diagnostic process. Together, they then reviewed and refined themes and identified illustrative quotations. They created the tables for the paper and reviewed these tables with members of the team.

Results

Sixteen dementia specialty care clinicians were interviewed for this study. Participant characteristics are available in Table 1. Eleven were MDs (neurology, psychiatry, geriatrics), two were social workers, two were nurses, and one was a neuropsychologist. Of these, six identified as female and ten as male. Three identified as Asian, two as Hispanic, two as “other,” and nine as white. We developed 5 themes that are presented below. Additional quotations can be found in Table 2.

Table 1.

Participant Characteristics.

Sex/Gender
Female	6
Male	10
Race/Ethnicity
White	9
Hispanic	2
Asian	3
Other	2
Specialty
Social work	2
Nursing	2
Neurology	9
Geriatrics	1
Psychiatry	1
Neuropsychology	1
Years in practice
<5	1
5-10	6
11-20	6
>20	3
% Time in clinic
<10%	3
10-20%	7
21-50%	2
>50%	4

Table 2.

Key Themes.

Theme	Exemplary Quotes
The importance of establishing an accurate diagnosis	Helps to provide clarity and correct misdiagnoses	D08 (Neurologist): I saw a youngish guy…young for our diseases, in his late 50s, early 60s, and probably had 5, 6 years of progressive decline. It took a while for his wife to figure out that this was a medical problem and then went to several neurologists and a psychiatrist before somebody pointed them in the right direction. Even the psychiatrist’s diagnosis was not correct but sort of well-intentioned in the sense that they recognized this was a neurodegenerative syndrome and not usual and needs special attention.
		D10 (Neurologist): [An MD at the dementia specialty care center] has given them a huge gift of diagnosis. Sometimes our patients have been struggling in this for years, and suddenly they have it, so they develop a real tight affinity with that person.‬‬‬‬‬‬‬‬‬‬
	Gives clinicians the knowledge framework to provide prognosis and anticipatory guidance	D10 (Neurologist): They all come to the [dementia specialty care center] because they know they’re going to get a clear diagnosis, but I think the emphasis on that diagnosis differs by age. If you’re 55 and you’re having problems, there’s so much emphasis on, “what is this?” if you’re 96 and you’re having problems, yes, it’s a necessary step of, “what is this?” but a lot of what I do is, “Okay. Now what?” you know, “what do we do now at this point?” so there’s a lot of education, preparing, taking medicines off, thinking about safety, thinking about decision-making, thinking about worst-case scenarios. Probably, you know, giving prognoses. Managing when it’s not taken well, which happens a lot.
	Helps educate patients and families about the disease and symptom presentation	D16 (Neurologist): Earlier on there was a lot of education that needed to be given to the family to understand sort of what this disease process is and how it’s affecting her and how the symptoms might progress down the road.
The timing of giving a diagnosis	D14 (Neurologist): I’m trying to get better at the timing of when you give the diagnosis…Everybody will have difficulty receiving – or, most people will have difficulty receiving an initial diagnosis of dementia, and you need to break down some of the taboos…preconceptions that they have that are incorrect and give them not an unrealistic but a positive view, if you want, of what can be done and what’s the focus, so that it is fulfilling to them.
	D11 (Neurologist): It’s interesting the range of emotional responses patients have to receiving a diagnosis. I think my own approach is to be quite explicit including just when I am suspecting…I do take time to check in with patients and family members, oftentimes before delivering a diagnosis in terms of what they’re worried about or what they think and then after delivering a diagnosis in terms of how it lands with them. I do have some patients who continue to grieve the diagnosis because for many people it is such a feared condition and many people have painful family experiences that they revisit after receiving a diagnosis, so that’s certainly a part of what we talk about.‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬
The gravity of delivering a diagnosis	D05 (Neurologist): When you miscalculate and you make the diagnosis too early, I’ve had an experience, for instance, where I saw young guy and I just misread him….one of the things I was thinking of is maybe, like, early, early AD. On the first visit I said this, and then a few weeks later I get a call from his wife asking me, “what did you tell him?” like, “He’s been destroyed,” basically. She was upset at me. So that’s an example of where you go, “Damn, I should not have done that.”
	D03 (Neurologist): I asked his wife and he what their goals were and they said they want to know what the diagnosis is, and so I told them what I thought. I said, “In my opinion, based on everything I’ve seen, this is the diagnosis”…and they went through all five stages of Elisabeth Kübler-Ross in about five minutes, and basically accused me of being the most evil person on the world. How could I? I just gave him a death sentence. How could I do that? Both of them felt the same way and were yelling and screaming.‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬
The central role of diagnosis and the need for more education around ongoing care	D01 (Advanced Practice Registered Nurse): We have some providers that clearly are very comfortable with ‬the diagnostic piece of seeing patients and not very comfortable with sort of the ongoing care and follow-up. And we’ve even talked about structuring our clinic so that people can be the kind of provider that they’re most comfortable [being]-- some that just would do diagnosis and then turn the patient and family over to somebody else and some that don’t like the diagnostic piece that would just really do follow-up. So I feel like our clinic, we have all the right ingredients, but not everybody is doing this.‬
	D05 (Neurologist): Getting to the bottom of what’s happening to the patient, and then what happens naturally, once you are good at that and you become a clinician scientist, then you start to learn, “Okay. I’m good at all the diagnostics…As you follow the lives of these patients then you start to realize that there’s more to this than just diagnosis, of course. Everybody knows that, but another thing is to experience it and to realize that there’s so much doctoring involved. Like, just being there listening, talking, educating, and that’s a little bit harder to teach. It’s teachable, but it’s harder.
Strengths and challenges of the interdisciplinary team	D11 (Neurologist): I think it’s a team-based approach, a lot of the focus of my interactions with patients in clinic have to do with initially delivering the diagnosis, conversations about prognosis, about what positive steps people can take to maintain brain health. We often review what advanced medical, legal and financial planning has been done and what should be done.‬ So that occupies a lot of my kind of initial evaluations of patients, I’m often referring to our social work and other interdisciplinary services to follow up with caregivers after the initial visit to provide local resources, referrals to things like support groups, adult day centers, respite to follow up on advance care planning.
	D05 (Neurologist): We have the luxury of having a team approach. So I think that allows me to not feel like I’m carrying the whole burden of dealing with all of these problems that emerge… I will rope in support staff, right. So nursing and social work support staff, and in the message I will often say something like, “The family needs more information about future planning,”‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬

Theme 1. The Importance of Establishing an Accurate Diagnosis

Participants articulated many reasons for the importance of establishing an accurate diagnosis. Many patients arrive at the dementia specialty care center with misdiagnoses or after having struggled to receive an accurate diagnosis. Participants felt their emphasis on diagnostic specificity fills an important care gap by correcting misdiagnoses made prior to the patient’s visit or by clarifying the diagnosis when either none had been made or when the diagnosis remained uncertain prior to visiting the dementia specialty care center. One neurologist described this dynamic,

D04 (Neurologist): A major contribution to families is just to present a diagnostic impression, because a lot of people…jump from doctor to doctor and they never hear a solid hypothesis or impression, and this could be out of, you know, paternalistic approaches to medicine or this could be out of not knowing exactly what we’re dealing with. But I find it useful when you sit down with a patient and/or the family and say, “This is what I think it is. It’s corticobasal syndrome, and this is the prognosis, and we should prepare for this.

Participants also felt that an accurate diagnosis gives clinicians the knowledge framework to provide patients and families with information about disease progression, prognosis, and anticipatory guidance that can help them plan for what to expect in the future. The same neurologist as above explained,

D04 (Neurologist): [When] I’m not necessarily sure what is causing the cognitive change…at least I can say, “This is not normal behavior. This is concerning,” and, “It’s very likely that this will worsen.” So I try to offer as much information as I have in terms of the diagnosis because I think this helps patients in terms of their planning, in terms of preparing for the future and, you know, psychologically I think we underestimate the impact of that step.

A social worker discussed the value of delving into anticipatory discussions about end-of-life immediately following diagnosis,

D13 (Social Worker): What I like about the Huntington’s Disease team…is that they address the end of life in the first one or two visits. They start having those conversations right away… that’s really helpful for the patient and the family or the caregiver to be thinking about and really engaging in that conversation, even if we don’t make decisions in that first meeting, which rarely we do…it helps frame how they want to live and what they want at the end of life, and then we can talk about other things to support their quality of life.‬

Finally, participants felt that a diagnosis made with pathophysiologic and neuroanatomical accuracy helps clinicians educate patients and families about the disease and symptom presentation. Participants felt that making an accurate diagnosis helps clinicians to understand the specific areas of neurodegeneration and thus clarify to patients and families the biological reasons for various symptom presentations.

D10 (Neurologist): Somebody I saw in clinic last week, their biggest needs are education, by far, and reassurance…They wanted a diagnosis. They wanted clarity of what to expect. They wanted clarification of why the symptoms didn’t look like what they’d read in books.

Theme 2: The Challenges Underlying the Timing of Giving a Diagnosis

Many participants articulated how they prepare patients and families for the possibility of a diagnosis. Participants discussed paying careful attention to the timing of when they give a diagnosis, for example, using their “clinical intuition,” slowly introducing the concept of the diagnosis, and checking in with patients and families before giving a diagnosis to help prepare them for the possibility of a diagnosis. This attention to timing enabled participants to tailor the disclosure process to the emotional needs of the patient and family by asking about worries, and evaluating how the diagnosis impacts the patient and family. ‬‬‬‬‬‬ ‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬

D06 (Psychiatrist): I really use my clinical intuition about when I tell people. Sometimes even if I tell people-- if I think that a diagnosis of Alzheimer's disease is going to make someone go out and put a bullet in their head, I consider that is someone who doesn't need to hear that right then. So, I'm careful.‬

Theme 3. The Gravity of Delivering an ADRD Diagnosis

Participants noted the gravity of being responsible for delivering a diagnosis of ADRD or supporting those delivering the diagnosis. They discussed the impact receiving a diagnosis can have on patients. Participants also found it challenging when patients and families had trouble accepting the diagnosis. Some experienced families wanting to protect the patient or being angry at the clinician for giving the diagnosis.

D09 (Neuropsychologist): If you screw it up, I mean, that’s huge. You know, you’re sending away a patient with this bomb essentially, and if it’s not delivered right, like, what are you doing to that person?

Theme 4: Diagnosing is a Central Part of Clinical Care in the Dementia Specialty Care Setting, But There is a Need for More Education Around Ongoing Care Management

Some participants felt that their center is very strong in their ability to identify a specific diagnosis and reported that identifying and giving a diagnosis was central to their work. However, many noted that they felt they could do a better job at ongoing care management and identified the need for more education, including around care conversations, attention to social aspects of the disease, and providing patients and families with anticipatory guidance. Others talked about a desire to learn more about how to incorporate and address patients’ and families’ psychological, emotional, and social contexts.

D07 (Nurse Practitioner): I think people need to know better how to manage these diseases. I think we’re phenomenal at diagnosing. We’re really good at teasing out, and, I mean, if you have something really weird, you want to come here and we’ll find it. How we then help you navigate the next few years, I’m not sure we’re as good at. Managing behaviors. Counseling about advanced directives and decision-making. I think all of that management piece we could do a better job of.

Theme 5: The Strengths and Challenges of an Interdisciplinary Team Approach

Although participants did identify a need for more education around disease and care management, many said an interdisciplinary team approach enables some team members to focus on making a diagnosis while others can focus on education, resources, and ongoing care based on their knowledge of the specific diagnosis. The interdisciplinary approach was mostly discussed as a strength of the care model.

D02 (Advanced Practice Registered Nurse): It doesn’t feel like this is anything that you can do alone. We have so many complex cases where I might work on behaviors, and I might help support the caregiver, and then we have a social worker that’s thinking about how to get them qualified for MediCal [Medicaid] so eventually they can maybe get on MediCal services and In-Home Supportive Services (IHSS). And we have our physician, who’s helping us figure out exactly what the diagnosis is and what the treatment should be.‬

However, some participants noted that the team-based approach can result in fragmentation in the types of roles they take on both during the diagnostic process and in the ongoing care of patients. They shared that family conferences are helpful in facilitating integration of the different disciplines, when all interdisciplinary team members get together to provide their impressions based on their disciplinary perspective.

D15 (Neurologist): We spend a lot of time with patients here, which is great. A lot of that time is focused on diagnosis, and sometimes you need that time…Although I do think it’s very important to explore these other dimensions [of care]…I’m not really sure what the role is of the doctor versus the other members of the team with respect to this…in a way, all of it’s everyone’s responsibility, but on the other hand, you kind of know which parts you were supposed to champion. I just worry about stuff falling through the cracks when you have a team approach... I actually think that, like, if we brought up this concept even in teaching conferences that would change the mindset of people in even thinking to ask these questions to the family..,the attending will say, “So where’s the anatomy? What’s the clinical syndrome? What’s the underlying pathology?” You know, why not just add one question,“Where is this person in terms of their concept of the disease?” or, “Are they struggling?”‬‬‬‬‬‬‬‬

Discussion

In this paper we characterized dementia specialty care clinicians’ perspectives on their role in the ADRD diagnostic process, including their experiences and the challenges they face. Neurologists articulated an emphasis on accurate diagnosis at the center, with team members from other disciplines providing patient and family support through connections to resources and guidance for managing behaviors and other symptoms. In what follows, we identify central areas of focus based on our results.

Clinicians Need Better Guidance and Support When Diagnostic Challenges Arise

The diagnostic process and giving a diagnosis are central to the work of dementia specialty care settings. Participants in our study discussed the many ways that a thoughtful, well-informed diagnosis is foundational to their role. Prior work has looked at the challenges of communicating the “bad news” of a diagnosis in neurological diseases, suggesting the importance of attention to setting, tailoring to the patient’s needs and cognitive abilities, and involving family through a team-based approach.^18,22,23 There is a large body of literature on both the challenges and benefits of giving and receiving a diagnosis, from the role of communication in diagnostic delivery^9,24,25 to the stress it causes clinicians.^26-28 A scoping review of patients with neurologic conditions, for example, found that overall, patients were generally satisfied with how their diagnosis was delivered, although many studies reviewed as well as other literature shows that patients would like clinicians to show more empathy, provide better information and education following a diagnosis, and spend more time with them.^8,29

Although clinicians in our study generally felt comfortable figuring out the timing of when to make a diagnosis, they also felt that delivering a diagnosis was a challenging part of their work. This was in part due to patients’ and families’ reactions and due to the difficulties providing ongoing support. More interventions are needed to support clinicians through diagnostic disclosure. There is also a need for guidance around addressing the social, functional, and psychological implications of a diagnosis, for patients and families and for clinicians.

One way to address these needs is to provide better serious illness conversation guidance for dementia, an approach that could also benefit primary care clinicians as their responsibilities in dementia diagnosis grow. Many opportunities currently exist to improve disclosure and follow-up. Palliative care and geriatrics often hone in on decision-making related to function, cognition, and care settings, and offer useful complementary insights and skills to many traditional dementia specialty care centers. ³⁰ Best practices for diagnostic disclosure include preparing the patient and family, providing pre-diagnostic counseling, involving family, understanding patients’ perspectives, responding to reactions, eliciting values to guide future care, communication, attention to quality of life, and future planning.^31-33 These disclosure techniques can be adapted to dementia diagnosis in specialty settings and in primary care.

An Interdisciplinary Approach to Diagnosis is Important

Participants in our study articulated the importance of the interdisciplinary team. They highlighted the scope of practice of the different disciplines involved on the team, suggesting that medical doctors often play a key role in diagnosis, while others on the team, such as social workers and nurses, provide ongoing care and connection to resources. Interdisciplinary teams in dementia specialty care settings often include physicians, nurse practitioners, physician assistants, registered nurses, medical assistants, neuropsychologists, social workers, and sometimes physical or occupational therapists.^34-36 Although many dementia specialty care settings can provide this team-based care, there are other specialty settings and primary care settings that do not have these resources. Even with a team available, some MD participants in our study wanted to provide more direct ongoing support to patients following a diagnosis, such as making connections to resources, addressing the social aspects of care, and helping family members learn how to manage behavioral symptoms and transitions of care. Although members of the interdisciplinary team were clear about their particular role in the diagnostic process, diagnostic disclosure, and post-diagnostic support, some participants identified a desire to strengthen their abilities in areas that cut across disciplinary silos.

Limitations

The primary limitation of the research is that it was conducted within a single well-resourced dementia specialty care center at an academic institution with clinicians who are involved in both clinical practice and research, so all participants reported experiences from within the same environment. Participants’ experiences may be different than those in community neurology or other settings, such as primary care. Additionally, this study was conducted before the FDA approval of disease-modifying treatments for Alzheimer’s disease, which require an accurate diagnosis with positive biomarkers to be eligible. Therefore, some themes may have been different if we were to conduct this study today. However, the majority of the themes still apply especially given that an accurate diagnosis with appropriate disclosure are required prior to consideration of a disease-modifying treatment, in addition to proper counseling regarding the benefits and adverse effects of such treatments. Finally, our sample size is small, which may limit the scope of our analysis in terms of variability and transferability of findings.

Conclusions and Future Directions: Making Dementia Diagnosis and Care More Accessible

With the advent of disease modifying therapies for dementia, the need for expanded access to settings where patients can receive accurate dementia diagnoses and dementia-specific care will grow. Many of the aspects of diagnosis and diagnostic disclosure discussed in this paper pertain to the social and emotional aspects of supporting patients through a challenging diagnosis and providing the support they and their families need. These aspects of diagnosis are relevant independent of the way that diagnosis is made, whether through blood biomarker tests or through cognitive testing, imaging, and gathering patient history. There is thus a need to build workforce capacity and structural solutions to provide more time and resources to engage in diagnosis and diagnostic disclosure in clinical settings that care for people with dementia across the healthcare system, whether in primary or specialty care. Telemedicine and tele-education approaches can increase access to high quality diagnosis and diagnostic disclosure, and can be used enhance the diagnostic skills of clinicians outside of traditional dementia specialty care settings.

ORCID iD

Alissa B. Sideman https://orcid.org/0000-0002-4433-5748