Medical professionals’ perspectives and experiences in disclosing a dementia diagnosis: a grounded theory study

Abstract

Background

Guided by patient autonomy and future care plans, most families of patients with dementia prefer to be fully informed of their condition. However, medical professionals follow different considerations regarding whether the diagnosis should be disclosed. This study primarily examined physicians’ experiences through in-depth explorations of their actual diagnostic disclosure practices, integrating their perspectives to provide appropriate forms of disclosure.

Methods

A grounded theory approach was employed, and 16 neurologists, geriatricians, and psychiatrists who disclosed diagnoses in clinical practice were recruited. A semistructured interview guide was used. Each interview was audio-recorded, transcribed, and analysed using the constant comparative.

Results

The core category of this study was overcoming problems through honest disclosure. The four major categories describe the participants’ experiences in disclosing a diagnosis. These include Duty to disclose, where clinical physicians have an obligation to truthfully reveal diagnostic results; Adjusting narratives, which involves adjusting communication based on acceptance levels within a limited time; Maintaining daily routines, focused on delaying disease progression and helping maintain daily life functioning; and Providing support and company, which instructs on interaction patterns between persons with dementia and caregivers.

Conclusions

Clinical physicians advocate for truthfully disclosing disease diagnoses, resolving the existing life difficulties of dementia patients and their relatives, and helping them live with their disease. Through open discussion and clarification, understanding and support are conveyed regarding care needs, and caregivers’ burdens and capabilities are accurately assessed, which has important effects on subsequent care and mutual communication.

Background

Diagnostic disclosure is a significant event in the lives of patients with dementia. Guided by patient autonomy and future care plans, most families of patients with dementia prefer to be fully informed of their condition [1–6]. Mei and Tu reported that most physicians believe that the benefits of diagnostic disclosure outweigh the drawbacks [7]. However, medical professionals must weigh various considerations regarding whether the diagnosis should be disclosed. Common barriers to diagnostic disclosure include difficulty in delivering bad news, the uncertainty of communicating with patients and their families, the risk of misdiagnosis, lack of time, the stigmatization of dementia, and concerns about the possible negative reactions of patients and their families [5, 8]. Grover reported that clinicians’ perceived barriers to the disclosure of a dementia diagnosis included concerns about the potential risks outweighing the benefits, the stress it places on the patient, perceived negative impacts on the therapeutic alliance, and a lack of effective treatments [9].

Disclosing a dementia diagnosis is imperative for promoting patient-centred care [10]. Rather than using medical terms, most physicians tend to use euphemistic terms when they disclose a diagnosis to patients and their caregivers [6]. Physicians reject the use of medical terms because they perceive that lay terms are better understood by people with dementia [11] and can minimize their anguish [1]. However, most specialists report that they always or often provide patients with information about their disease’s symptoms, causes, and progression according to their level of cognitive impairment, specific dementia type, and level of emotional distress [2]. Clinicians lacking confidence in diagnostic disclosure expressed concerns about the patient’s feelings and viewed disease progression negatively [12]. Even if physicians have the medical competence to describe the patient’s condition, they may not possess or be able to use interpersonal skills to emotionally support the patient when delivering the diagnosis. In particular, instilling hope while delivering an honest disclosure becomes more complex when cognitive impairment affects comprehension [1].

Grover suggested that a diagnostic disclosure should be a process instead of a single event. Clinicians should be well prepared to disclose a dementia diagnosis and provide information that attends to the needs of patients and their caregivers [9]. The diagnostic process should involve adequate prediagnostic counselling and postdiagnostic support, and the explanations should be adjusted according to the patient’s symptoms, preferences, and awareness [1]. Factors that facilitate the disclosure of a dementia diagnosis include understanding the patient’s and their family’s understanding of dementia, obtaining diagnostic resources and multidisciplinary assessments, having adequate time to thoroughly disclose diagnostic outcomes, and providing feasible community-based support for dementia [8]. Peixoto reported that follow-ups are effective because people with dementia or learning disabilities may need additional time to understand complicated information [13]. Therefore, the diagnostic process should identify the patient’s or their caregiver’s beliefs and expectations, as well as misunderstandings that could arise [6].

Existing research on the disclosure of a dementia diagnosis has employed both quantitative surveys [2, 4, 6, 14–17] and qualitative studies of clinicians’ perspectives [1, 5, 8, 10, 18, 19]. However, most studies have focused on Western contexts where cultural values emphasizing individual autonomy and patient rights shape disclosure practices. In Asian health care settings, particularly in Taiwan, distinct cultural dynamics, including Confucian family-centred decision-making, greater familial involvement in medical decisions, and different attitudes towards truth-telling in serious illness, are present [20, 21]. Taiwan’s National Health Insurance system provides universal dementia care access but constrains consultations to 5–10 min, creating practical barriers to comprehensive disclosure [22]. Traditional Confucian values emphasizing filial piety often position family members as primary information recipients, influencing whether physicians disclose directly to patients or through relatives [20]. Additionally, persistent stigmatization of dementia, with some viewing cognitive decline as normal ageing rather than a medical condition [21], further complicates disclosure practices. How physicians navigate these cultural and systemic factors during disclosure remains underexplored.

Diagnosing dementia is challenging because the tailored process often involves the needs and expectations of the physician, the patient, and their family [5]. The clinical practice guidelines of the Alzheimer’s Association state that physicians should deliver basic disease-related information to patients and their caregivers and provide usable resources and emotional support [23]. However, despite these established guidelines, investigations into how these principles are actually implemented in diverse clinical contexts are insufficient. The purpose of this qualitative study is to explore medical professionals’ retrospective accounts and reflections on their experiences in disclosing dementia diagnoses within the context of Taiwanese health care. The aim is to develop a theoretical model explaining the social and psychological processes through which physicians in Taiwan navigate dementia diagnosis disclosure, including how they balance professional obligations with contextual constraints, manage uncertainty and emotional complexity, and adapt their communication strategies to achieve therapeutic goals. By generating grounded theory from physicians’ actual experiences, this study aims to provide a conceptual framework that can inform the development of culturally appropriate, evidence-based disclosure protocols.

Method

Study design and methodological approach

This study employed the grounded theory method and was undertaken according to the consolidated criteria for reporting qualitative research (COREQ). Grounded theory emphasizes the use of both induction and deduction and continuously employs comparative and analytical methods to construct substantive or formal theories. This approach allows us to go beyond simply describing experience; it enables us to identify relationships between different dimensions of disclosure and to construct a core category that integrates the subcategories into a coherent theoretical understanding. Social phenomena characterized by microlevel, action-oriented, and time-based development processes and research questions that can present stages and different levels are all suitable for grounded theory research [24]. We conducted in-depth interviews with physicians using semistructured guidelines (Table 1) to gain insights into their diagnostic disclosure experiences, implications, and contexts.

Table 1.

Interview guidelines

1. Could you share your experiences in disclosing a dementia diagnosis? What is your approach to the disclosure? 2. Would you disclose the diagnosis to the patient or their family? What are the reasons? 3. What other measures did you take aside from disclosing the dementia diagnosis? 4. How did you feel when disclosing a dementia diagnosis to a patient? 5. Are there any differences in the approaches or thoughts regarding a dementia diagnosis and a general diagnosis? What are the reasons? 6. Are there any memorable diagnostic disclosure experiences? 7. What are the challenges or barriers to disclosing a dementia diagnosis? 8. What are the consequences of disclosing or not disclosing a dementia diagnosis to a patient?

Setting and participants

Participants were recruited via purposive sampling to ensure diverse representations of clinical specialties involved in dementia care, including neurology, psychiatry, and geriatrics. Among the 17 physicians invited to participate, one declined because of a heavy clinical workload, while the remaining 16 agreed and completed the interviews (Table 2). In this study, participants were recruited from four medical centres and teaching hospitals in northern Taiwan. Ten participants practised at two medical centres and six at two regional teaching hospitals. Data were collected through one-on-one interviews conducted in consulting and meeting rooms. The 16 participants were recruited in three distinct phases (6-5-5), allowing interim analysis to inform subsequent interviews. The sample included 13 males (81%) and 3 females (19%), with ages ranging from 32 to 65 years (mean = 44.6, SD = 9.8). Specialty distribution included 8 neurologists (50%), 5 geriatricians (31%), and 3 psychiatrists (19%). Years of clinical practice postresidency ranged from 4 to 37 years (mean = 16.1, SD = 9.9).

Table 2.

Participants’ demographic information

Code	Sex	Age	Specialty	Clinical seniority	Practice Setting
D1	Male	39	Neurology	11	Regional Hospital
D2	Male	55	Neurology	20	Regional Hospital
D3	Male	40	Neurology	8	Regional Hospital
D4	Male	32	Neurology	4	Regional Hospital
D5	Male	54	Neurology	26	Regional Hospital
D6	Male	45	Neurology	17	Regional Hospital
D7	Male	39	Neurology	11	Regional Hospital
D8	Male	61	Neurology	33	Regional Hospital
D9	Male	65	Geriatrics	37	Regional Hospital
D10	Male	39	Psychiatry	11	Medical Centre
D11	Male	51	Psychiatry	23	Regional Hospital
D12	Female	41	Geriatrics	13	Medical Centre
D13	Female	35	Geriatrics	7	Medical Centre
D14	Male	40	Geriatrics	12	Medical Centre
D15	Female	36	Geriatrics	8	Medical Centre
D16	Male	45	Psychiatry	17	Medical Centre

Data collection and ethical considerations

This study was approved by the Institutional Review Board of a regional hospital in northern Taiwan (NTUH-REC No. 111-130-F). Prior to data collection, a pilot study was conducted to verify the appropriateness of the interview questions. The pilot study was completed by one geriatrician and one neurologist. As both participants were able to complete the interviews successfully and fully articulate their experiences in disclosing dementia diagnoses, no modifications to the interview questions were deemed necessary.

This study uses the grounded theory data analysis approach developed by Strauss and Corbin, which includes a series of procedures from open coding and axial coding to selective coding [24]. All the interviews were conducted by the first author in private consulting rooms or meeting rooms at the hospital facilities between January and July 2023. Each participant was interviewed with voice recording for 40–50 min, and each participant was interviewed only once. All the interviews were audio-recorded with participants’ permission using a digital voice recorder. After the interview, the contents of the interview were immediately transcribed in word format by a professional transcriptionist to preserve the completeness of the record. At the end of each interview, the interviewer briefly summarized key points and asked participants to confirm, correct, or clarify the interviewer’s understanding. The researchers conducted continuous analysis alongside data collection, and the first author conducted a preliminary analysis before the next interview. Data saturation was reached at the 14th interview, as no new categories or significant conceptual insights emerged from the final two interviews.

The following four aspects proposed by Lincoln and Guba were used to establish whether the data collected and analysis were trustworthy in this study [25]. To establish credibility, each in-depth interview was conducted openly, and special attention was given to the setting and atmosphere to ensure that the participants could freely and sincerely express their subjective views and intentions. Participants were recruited through professional networks but had no prior collegial or hierarchical relationships with the research team. The researcher visited and contacted the participants to introduce themselves, explain the research purpose and methods, and discuss the appropriate time and place for interviewing to build trust before the interviews. In terms of dependability, the data were collected and managed by the first author alone. The interview contents and transcripts were read thoroughly and repeatedly. All the study participants were physicians willing to share their authentic experiences in disclosing a dementia diagnosis. The researcher constantly verified the data with the participants to ensure the completeness of the contextual data. At the end of each interview, the interviewer summarized key points and asked participants to confirm, correct, or elaborate on the interviewer’s understanding. The diversity of participants’ sex, age, and medical specialty attests to the richness of the data, which enhances the potential transferability of findings to other contexts.

Data analysis

The research team was made up of two female faculty members (the first and third authors) and one female physician (the second author, a neurologist). Both M-CCs and H-RLs had received training in qualitative methods, interviewing, and data analysis and had prior experience with the grounded theory method. To ensure analytical rigor, the first and third authors met biweekly to compare coding, discuss discrepancies, and reach consensus on emerging categories. The data were collected and analysed simultaneously to check for conflicting information and whether additional data had to be collected. To ensure data consistency, the participants’ opinions, interview context, and interactions were recorded and verified by other study team members (geriatric medicine and qualitative research experts). The data were constantly analysed, classified, and validated to ensure stability. In the constant comparative method [24], the systematic data were analysed through inductive or deductive approaches, and the presented phenomena were inductively examined. In terms of confirmability, the first author (M-CC), who conducted all the interviews and led the analysis, was a nurse researcher with clinical experience in geriatric care. This background provided advantages in understanding clinical contexts and building rapport with physician participants. However, it also carried the potential for bias, as, compared with physicians, nurses may hold different perspectives on patient autonomy and family involvement. To address these potential biases, the first author maintained a reflexive journal throughout the research process and adopted a neutral and objective stance throughout the study on the basis of the feedback of peers and experts. When analysed through grounded theory, the data were objectively classified and interpreted. The potential interaction or interplay between the researcher and the data was addressed to minimize the influence of personal background factors on the objectivity of the data analysis.

Results

On the basis of the physicians’ diagnostic disclosure experiences analysed through grounded theory, we developed a theoretical framework centred on the core theme “Overcoming problems through honest disclosure” (Fig. 1). This framework explains the process through which physicians navigate dementia diagnosis disclosure in clinical practice. The theoretical model illustrates that disclosure is not a single event but an ongoing process shaped by professional obligations, situational factors, and the dual goals of medical management and psychosocial support. The four major categories represent key dimensions of this process, which are interconnected and mutually reinforcing rather than discrete themes.

Fig. 1.

Overcoming problems through honest disclosure

Duty to disclose

Grounded in their obligations as medical professionals, the clinicians chose to deliver an honest disclosure. The two subthemes were “Duty to disclose a diagnosis truthfully” and “Anticipated and manageable emotional reactions.”

Duty to disclose a diagnosis truthfully

Participants consistently emphasized that diagnostic disclosure is rooted in patients’ fundamental right to know their health status. Physicians’ honest disclosure represents a form of respect for patient autonomy, enabling individuals with dementia and their families to make informed decisions about future care arrangements while their cognitive capacity remains intact. As one neurologist explained, “From a physician’s perspective, to disclose is to respect the patient as they have the right to know about their health status” (D13). This sense of professional obligation extended beyond merely informing patients; it encompassed providing comprehensive medical evidence—including examination reports, neuroimaging, and cognitive assessments—to ensure that families understood the diagnosis’s foundation and legitimacy.

Anticipated and manageable emotional reactions

Contrary to expectations, most of the participating physicians reported minimal psychological stress when delivering dementia diagnoses. This finding reflects the reality that patients and families typically arrive at appointments already aware of cognitive changes, having observed behavioural abnormalities over time. The disclosure process, therefore, often served to confirm rather than reveal new information. Physicians noted that patients generally demonstrated relatively high acceptance levels, particularly among older adults who viewed cognitive decline as a natural part of ageing. One participant observed, “Most patients or families have a hunch about the patient’s condition during their appointments… older patients tend to have a higher level of acceptance because they understand that they may get the disease because of ageing” (D8). Even when patients exhibited anger or denial, clinicians framed these reactions as anticipated responses rather than personal setbacks, suggesting that they had developed emotional preparedness strategies for managing difficult disclosures.

Adjusting narratives

The participants adjusted the explanation method in real time on the basis of patient responses during disclosure to make the process more flexible. They had to communicate with the patient and their family in a limited timeframe and on the basis of their level of acceptance. The two subthemes were “Making the disclosure based on the situation” and “Time restrictions in delivering complete disclosures.”

Making the disclosure on the basis of the situation

The disclosure process was characterized by flexibility and situational adaptation rather than adherence to rigid protocols. Physicians made real-time adjustments on the basis of multiple contextual factors, including disease severity, patients’ cognitive capacity, family dynamics, and individual acceptance levels. This adaptive approach sometimes resulted in selective disclosure practices, where clinicians chose to inform family members separately from patients or modified the level of detail provided on the basis of the patient’s age and comprehension ability. As one physician noted, “I don’t feel the need to inform older patients who are in their eighties or nineties… They may not understand detailed explanations, unlike relatively younger patients” (D3). While this flexibility allowed for personalized communication, it also revealed tension between the principle of truthful disclosure and the practical challenges of determining optimal disclosure strategies in diverse clinical situations.

Time restrictions in delivering complete disclosures

Time constraints emerged as a significant structural barrier to comprehensive diagnostic disclosure. Participants consistently expressed frustration that dementia diagnoses required substantially more explanation time than other conditions did, but appointment schedules provided insufficient time for thorough discussion. One clinician noted, “It takes at least an hour to disclose and discuss the contents, but outpatient appointments at present do not allocate enough time for in-depth discussions” (D8). This temporal pressure forced physicians to compress complex information about disease progression, treatment options, and care strategies into brief consultations, potentially compromising the quality of communication and families’ understanding.

Maintaining daily routines

When the diagnosis is disclosed, clinicians consider the expectations of patients with dementia and their caregivers about potential treatments to delay disease progression and strategies to help patients maintain normal daily life. The two subthemes were “Prescribing medications” and “Recommending activities.”

Prescribing medications

The participants prescribed medications to delay the progression of dementia or manage its systems to reduce the patients’ and caregivers’ daily burdens. Beyond their clinical efficacy in slowing cognitive decline or managing behavioural symptoms, medications provided patients and families with a sense of agency and hope in confronting an otherwise progressive condition. Physicians described prescribing patterns that addressed both cognitive symptoms and common comorbidities such as depression or anxiety that often accompany dementia awareness. As one participant explained, “Drug treatment includes cardiovascular disease control and cognitive improvement, both of which are of equal importance” (D8). This dual-focus approach suggests that physicians view medication management as part of a holistic strategy to maintain patients’ overall functioning and quality of life while simultaneously reducing caregiver burden.

Recommending activities

Nonpharmacological interventions constituted an essential component of postdisclosure care planning, with physicians emphasizing lifestyle modifications to slow disease progression. Activity recommendations typically focused on increasing physical exercise, maintaining social engagement, and establishing structured daily routines. Clinicians often employed encouraging language that emphasized possibilities for maintaining function. One physician noted, “I subtly recommend my patients to engage in more activities that prevent further deterioration” (D10). This communication strategy appeared designed to balance realism about the diagnosis with optimism about maintaining quality of life, offering patients and families actionable steps they could implement immediately to feel empowered in managing the condition.

Providing support and company

The participants address the concerns of patients with dementia and their caregivers by providing emotional support, instruction, and resources to help them adapt their interaction patterns and manage daily life challenges together. The two subthemes were “Instructing about interactive methods” and “Providing usable resources.”

Instructing about interactive methods

Recognizing that dementia fundamentally alters relational dynamics, physicians taught caregivers how to interact with patients and avoid conflict. This education addressed the emotional challenges families face when patients exhibit repetitive behaviours, personality changes, or memory loss that strain established relationship patterns. Clinicians provided practical guidance on emotional regulation and conflict avoidance that could help families maintain compassionate caregiving despite frustrating symptoms. As one participant explained, “The family must know how to care for and interact with these older patients. They must learn how to control their emotions when the patient repeatedly asks them about the same thing” (D4). This instructional approach reflects physicians’ awareness that successful dementia care depends not only on medical management but also on families’ capacity to adapt their caregiving approaches to meet patients’ changing cognitive and emotional needs.

Providing usable resources

The participants recognized that clinical care alone could not address the multifaceted challenges families confront when caring for someone with dementia. Consequently, they actively connected patients and families with community resources, suggesting that patients and their families use social resources to mitigate the emotional impacts and distress of the patient’s illness. These referrals served multiple purposes, including reducing caregiver isolation, providing practical assistance with daily care, and creating opportunities for families to learn from others with lived dementia care experience. One physician emphasized the value of peer support: “Providing them with relevant resources, support groups, and volunteer assistance… the volunteers are mostly the family of patients with dementia. Having previous experiences benefits a patient and their family” (D18). By facilitating access to these broader support networks, clinicians extended their care beyond clinical encounters, acknowledging that effective dementia management requires sustained, community-based support structures.

Discussion

Through in-depth interviews with 16 clinical dementia specialists, we explored their experiences in disclosing dementia diagnoses. Based on the clinicians’ diagnostic disclosure experiences, the core theme was “overcoming problems through honest disclosure.” This shows that the specialists focused on the core theme of honest disclosures to help patients and their families overcome their current psychological distress, postdiagnosis confusion, and concerns about the future and learn to live with their illness.

Our study revealed that clinicians were inclined to inform both patients and caregivers about the diagnosis on the basis of their responsibility to disclose truthfully and from their respect for patient autonomy. Previous research has consistently demonstrated that timely diagnosis and information disclosure can benefit patients and their families [8, 26, 27]. Owing to their duty to disclose a diagnosis truthfully, the clinicians were inclined to inform the patient and their caregiver about the patient’s condition. On the basis of the principle of the patient’s right to autonomy, clinicians consider that patients have the right to be informed of their condition and treatment options. Extensive research has demonstrated the benefits of diagnostic disclosure from patient and caregiver perspectives. For instance, Wehrmann et al.’s systematic review of 45 studies on patient and caregiver preferences highlighted the importance of timely and honest disclosure in enabling individuals to make informed decisions about their future care [28]. This observation aligns with multiple studies that identified the reasons for diagnostic disclosure, including respecting the patient’s autonomy and making advanced care or financial plans [9, 29, 30]. McLaughlin and Laird reported that general practitioners mostly agreed that timely diagnosis and information disclosure can benefit patients and their families [8]. Diagnostic disclosure allows patients and their families to prepare for the future. However, while research examining diagnostic disclosure from patient and caregiver perspectives is extensive, few studies have explored clinicians’ experiences and attitudes, particularly among dementia specialists. Our study differs from previous studies that focused on the experiences of family or primary care physicians in delivering a diagnostic disclosure [18, 19]. We focused on this comparison to highlight how clinical expertise influences disclosure; these physicians were less willing to disclose a diagnosis because of their lack of confidence in disclosing it, lack of attention to the patient’s advantage in taking action, and concerns about the stigmatization of a disease. In contrast, the dementia specialists in our study (neurologists, geriatricians, and psychiatrists) demonstrated greater confidence and willingness in diagnostic disclosure, highlighting the importance of specialty training and expertise in this critical aspect of dementia care.

A key finding of our study was that the participating specialists did not experience significant mental stress when they disclosed dementia diagnoses, as most patients and caregivers had already suspected the condition before seeking treatment. Most people with dementia and their caregivers already felt that the patient was unwell even before seeking treatment. Therefore, the clinicians who participated in our study did not experience significant mental stress when they disclosed the diagnosis. Several studies have reported varying levels of clinician confidence in diagnosing dementia, with some showing high confidence among specialists [15], while others have highlighted that clinicians feel particularly hampered when they have to convey a diagnosis to patients, avoid performing a diagnosis, and are stressed when they have to deliver bad news [5, 6, 18, 31]. However, a Swiss survey reported that most general practitioners (64%) were confident in the diagnosis of dementia [15], which partially aligns with our findings. This difference may be associated with the clinician’s specific speciality. While generalists often feel stressed when they are delivering bad news, our study included neurologists, geriatricians, and psychiatrists who were more experienced in diagnosing dementia. Moreover, most caregivers anticipated that the patients were unwell because of their abnormal behaviours before seeking treatment; thus, the clinicians were not stressed during the disclosure in our study.

Our participants demonstrated flexibility in their disclosure approaches, tailoring their methods to the patient’s understanding and acceptance of their illness. On the basis of the situation and the patient’s understanding and acceptance of their illness, the participants had different approaches to disclosing a dementia diagnosis. Most preferred to inform both the patient and their family at the same time. These findings align with those of Woods et al., who reported that simultaneously disclosing and communicating a diagnosis had significant consequences for caregivers’ subsequent adjustments [32]. However, on the basis of the clinical judgement and qualitative interviews in our study, clinicians’ assessments of each party’s understanding and acceptance of the condition and its severity were performed. Clinicians strive to describe the patient’s condition on the basis of symptoms and examination reports and adjust their explanations according to the patient’s awareness and the needs and expectations of the patient and their family [1]. Many specialists maintain that they always or often provide information about the causes and progression of a disease and the causes of its symptoms and modify the information they provide on the basis of the patient’s level of cognitive impairment, type of dementia, and level of emotional distress [2].

A significant challenge identified in our study was that clinicians felt that their explanations were not comprehensive because of time restrictions in delivering complete disclosures. However, owing to time restrictions in delivering complete disclosures, the clinicians who participated in our study felt that their explanations were not comprehensive because of time limitations. Other studies have noted this drawback [5, 8, 16]. Clinicians tend to perceive that diagnosing and treating dementia is more challenging than they are for other diseases, and a comprehensive diagnosis of dementia may require significant time and effort [33]. Research emphasizes that adequate time is essential to disclose diagnostic outcomes sensitively [8]. Since a diagnostic disclosure is often the first step to subsequent care, Grover suggested that clinicians should be prepared for the disclosure and allocate ample time so that the process is not completed hastily [9]. This is particularly important because many people with dementia and their families have a limited understanding of dementia. Therefore, clinicians require adequate time to explain the patient’s condition and provide emotional support.

Our study revealed that clinical physicians routinely inform people with dementia and caregivers of the diagnosis and subsequently prescribe medications and recommend activities to address the presenting symptoms. Clinical physicians inform people with dementia and caregivers of the diagnosis and subsequently prescribe medications and recommend activities to address the symptoms that prompted them to seek medical treatment. Continuing long-term drug treatment after a confirmed dementia diagnosis supports functional maintenance [34, 35]. Current evidence suggests that pharmacological treatments may provide modest, short-term benefits in terms of symptom management [36]. Other evidence-based nonpharmacological interventions include attention training [37], combined cognitive and physical training [38–40], and multidisciplinary management [41, 42]. Since these interventions have been demonstrated in previous studies to help manage symptoms, clinicians can confidently recommend them to delay the progression of dementia.

The clinicians in our study emphasized helping caregivers cope with patients’ emotions and locating support resources as integral parts of the disclosure process. Clinicians can help caregivers cope with and soothe patients’ emotions by instructing them about interactive methods and help patients and their caregivers locate support measures by providing them with usable resources. Wollney et al. recommended that disclosing a dementia diagnosis should consist of nurturing patient–physician relationships, educating patients and their family, and adopting family-centred approaches [5]. The disclosure process should allow patients and their caregivers to ask questions, and clinicians should record the emotional responses of patients and their families when they are informed of the diagnosis. Abe et al. reported that caregivers are often most likely to be distressed by the symptoms of dementia [12]. This observation underscores the importance of organizing disclosure meetings to relieve their emotions. Families often want to receive more information and education to help them handle future events [1]. Clinicians should ensure that both the patient and their family are simultaneously accounted for when a diagnosis is being discussed [3]. To improve patient understanding and involvement in the treatment process, our findings on ‘Adjusting narratives’ and ‘Providing support and company’ suggest that clinicians should focus on striking a balance between the varying communicative needs of patients and their caregivers while maintaining clarity and simultaneously lowering the emotional impact of a dementia diagnosis. This aligns with previous recommendations for patient-centred communication in dementia care [1, 5].

Finally, our participants recognized that the information delivered in diagnostic disclosures is often incomplete because of time restrictions, suggesting the need for multidisciplinary involvement. Owing to the time restrictions identified in our theme ‘Time restrictions in delivering complete disclosures,’ participants reported that the information delivered in a diagnostic disclosure is often incomplete. These findings corroborate previous research [5, 16] while providing deeper insight into how clinicians experience and manage this constraint in practice. Although the clinician is responsible for delivering diagnostic disclosure, other medical professionals can assist in this process, especially for newly diagnosed patients and their caregivers or those who require additional information and consultation. Their inclusion ensures that sufficient, continuous, and complete information and support are provided.

Limitations

Several limitations of this study should be noted. First, it was conducted at a specific medical centre and teaching hospital in northern Taiwan, and all the participants were specialists (neurologists, geriatricians, or psychiatrists). Therefore, the findings may not be generalizable to primary care physicians or different regional health care contexts. Second, there was an overrepresentation of male participants (13 males vs. 3 females), which may limit the breadth of perspectives regarding gender-specific communication styles in diagnostic disclosure. Third, single interviews captured perspectives at one time point. Longitudinal research tracking physicians’ disclosure practices over time could reveal how approaches evolve with experience.

Conclusion

On the basis of participants’ experiences in disclosing a diagnosis, they advocated honest disclosure to relieve the ongoing hardships endured by patients with dementia and their families and assist them in living with their illness. Clinicians expect to have ample time to resolve issues with patients with dementia and their caregivers through honest disclosure. On the basis of our findings, particularly the theme of “adjusting narratives” and the challenge of “time restrictions in delivering complete disclosures,” we recommend that, before a disclosure is delivered, physicians should fully assess the patient’s understanding of their cognitive status; explicitly discuss their expectations and opinions about the diagnosis with the patient’s caregivers; and ensure that the discussions are transparent and comprehensible and that they understand and support the patient’s care needs and thoroughly assess the caregiver’s burdens and abilities. These recommendations extend previous guidance on diagnostic disclosure [9, 32] by incorporating clinicians’ lived experiences of navigating these complex communicative demands in real-world clinical practice settings. These measures have important effects on subsequent care tasks and patient‒physician communication.

Authors’ contributions

MCC designed the study, gathered the data, analysed the data, acquired funding, and prepared and approved the draft and final version of the manuscript; CIC contributed to the design, conducted expert consultations, and reviewed the results; and HRL conceived the study with MCC, supervised the data analyses, provided overall guidance and prepared the first draft. All the coauthors (CIC and HRL) read and approved the final version of the manuscript.

Funding

This study was supported by Taiwan’s National Science and Technology Council. (NSTC 111-2410-H-255-013-MY2)

Data availability

The dataset analysed in the current study are available from the corresponding author upon reasonable request. The data are not publicly available because the information could compromise research participant privacy.

Declarations

Ethics approval and consent to participate

This study was approved by the Research Ethics Committee at the National Taiwan University Hospital (NTUH-REC No. 111-130-F). Informed consent was obtained from the participants prior to the interviews. All the methods in this study were carried out in accordance with all the guidelines and regulations.

Consent for publication

Prior to conducting the interviews, the researcher clearly explained the participants or their rights, including that they could choose to withdraw from the study at any time without affecting their care or other reprisals, and obtained their written consent.

Competing interests

The authors declare no competing interests.