As biomarker testing for Alzheimer’s disease (AD) evolves, timely and compassionate disclosure of a diagnosis is more complex than ever. Yet, clinicians may struggle with how — or in some cases whether — to disclose that a patient has mild cognitive impairment (MCI) or dementia.
A recent perspective offers a practical roadmap to help clinicians navigate these challenging conversations.
The authors from the Perelman School of Medicine, University of Pennsylvania, Philadelphia, noted that disclosure of a dementia diagnosis “is particularly nuanced and requires a conscientious approach. Clinicians must assess patients’ understanding and appreciation of symptoms, goals for the evaluation, and desire for information.”
Key Barriers to Diagnostic Disclosure
Disclosing a diagnosis of MCI or dementia fosters autonomy, helps the patient/carer plan for the future, and opens the door to possible disease-modifying interventions and supportive resources, they pointed out.
Yet it’s estimated that fewer than half of Americans with MCI are told of their diagnosis by a clinician and the reasons vary.
Individuals who suspect cognitive trouble may be reluctant to see their doctor about it. Some clinicians may opt not to share the diagnosis fearing negative patient reactions, or in the mistaken belief that there is little benefit in doing so.
“As with most things, the more clinicians discuss this topic and disclose diagnoses of cognitive impairment, the more comfortable they will become,” lead author Kyra O’Brien, MD, told Medscape Medical News.
“Generally, patients and families want to know what is going on. Having a conversation with the patient and family about their goals for the evaluation and how much they want to know, prior to starting the diagnostic process, is really key. This will help the clinician feel more confident about what information they should disclose and help them tailor the conversation to the patient and family’s needs,” O’Brien said.
Is It Ever Okay Not to Disclose a Diagnosis?
Once there is biomarker or neuropsychological evidence of cognitive impairment, is there any justification to withholding that information?
Disclosure “should be the default” once a patient and care partner agree to and complete an evaluation, O’Brien and colleagues said. However, they acknowledged that some circumstances may warrant limiting the information shared or withholding the diagnosis from the patient.
One such circumstance outlined by the authors is a severe risk to patient safety. Psychiatric comorbidity, such as severe depression, anxiety, or suicidal ideation, may be temporarily exacerbated by an MCI/dementia disclosure. An assessment of mood-related symptoms should be part of the routine work-up. However, the presence of a mood disorder is not an absolute contraindication to diagnostic disclosure.
Other circumstances include an explicit patient preference for not knowing or a request from family members that the diagnosis be shared with them and not the patient. In these cases, it might be helpful to engage a social worker to talk through the issues with the patient and family.
“Having a conversation prior to undergoing the diagnostic evaluation is key to understanding if any of these factors are present,” O’Brien told Medscape Medical News.
Shaheen Lakhan, MD, neurologist and researcher based in Miami agreed that there are times when nondisclosure is “ethically justifiable.”
“Consider an 82-year-old with advanced heart failure and moderate cognitive impairment whose spouse, as primary caregiver, questions the value of amyloid biomarker results, knowing it could cause distress without changing the care plan. Or a 55-year-old with severe anxiety who explicitly states they don’t want to know unless there’s a proven treatment,” he said.
“Disclosure should serve the patient, not burden them. When results have no actionable next steps, could cause psychological harm, or when a patient lacks the capacity to understand, withholding — or carefully timing disclosure — may be the most compassionate approach. The goal isn’t simply to provide data, but to ensure that information empowers, not overwhelms,” Lakhan told Medscape Medical News.
The Triad Approach: Patient–Care Partner–Clinician
A central tenet of disclosure is the critical importance of triadic communication. Traditionally, adult medicine centers on a dyad: A physician and a cognitively-intact adult. In dementia care, partners play a crucial role, providing support to the patient and accurate information to the clinician.
Ideally, the patient should be encouraged to bring a care partner to the initial visit. Although some patients with subtle symptoms and minimal impairments may object to involving others early on.
And not all patients have a spouse, relative, or close friend able (or willing) to serve as a caregiver. For these patients, clinicians may consider referrals to a social worker, geriatric care manager or community or volunteer programs that provide assistance to the elderly.
“Physicians should consider the use of a dementia care navigation specialist who can serve as a point person for the diagnosed individual and their families, connecting them to disease information and support resources,” Heather M. Snyder, PhD, senior vice president of medical and scientific relations, at the Alzheimer’s Association, told Medscape Medical News.
SPIKES Frameworks for ‘Breaking Bad News’
The purpose of diagnostic disclosure is to explain the patient’s illness “accurately and compassionately” to the patient and caregiver, O’Brien and colleagues said.
The first element of this is to provide a “syndromic diagnosis” of MCI or dementia, education about what these terms mean and discuss possible causes. An important aspect of this is matching the depth and style of disclosure to the patient’s cognitive status and emotional readiness.
One well-known approach to delivering difficult news developed in the oncology and palliative care community can be applied without modification to MCI/dementia diagnostic disclosure. It’s called SPIKES and has six steps:
S (Set up interview): Arrange a private, comfortable space and prepare the patient for a serious discussion.
P (Perception assessment): Ask open-ended questions to assess the patient’s (and caregivers) understanding and appreciation of their symptoms.
I (Invitation): Obtain the patient and/or caregiver invitation to share how much detail and what types of information they want. Some prefer broad strokes; others want every nuance.
K (Knowledge): Provide testing results with empathy; disclose syndromic diagnosis and stage. Discuss prognosis if desired by patient/carer. Invite questions.
E (Emotions/empathy): Acknowledge the emotional impact of the diagnosis; provide an opportunity for the patient/carer to express their emotions; offer support.
S (Strategy and Summary): Outline next steps and follow-up plans, ensuring clarity on immediate and long-term actions.
Snyder told Medscape Medical News, “As the landscape of clinical care changes, it is also important that we continue to research and understand the impact of disclosure and how to best share information with all parties, including providing necessary resources in their community.”
Enlist Artificial Intelligence (AI) to Help Ease the Burden?
Clear, accurate, and compassionate disclosure of MCI and dementia takes time, but O’Brien said there are ways to achieve effective diagnostic disclosure, even in busy practices.
“In my practice, for example, sometimes during the evaluation I am not able to find a separate space to speak with a patient’s family member, away from the patient. If this happens, I call the family member at a later time so they can share information without the patient being present,” she told Medscape Medical News.
“Some have also opted to email me with their comments. Certainly, if there are staff members or nurses who can perform part of the visit with the patient while the clinician speaks with the family, or vice versa, that would facilitate the process as well.”
“Clinic staff can also help patients and families prepare for these visits. For example, clinic staff can call the patient prior to the visits to remind them to bring a family member or care partner, and they can send them lists of questions to review or surveys to fill out before the clinic visit. This might help make sure the clinic visit time is used efficiently,” O’Brien said.
Lakhan noted that the “explosion of biomarker testing in MCI/AD presents both incredible opportunities and significant challenges”. He sees a role for AI-aided care, not to replace doctors; but rather to help streamline the complexity.
“AI-driven tools can contextualize biomarker results, personalize prevention plans, and scale patient education, ensuring at-risk individuals receive not just information but also actionable guidance. This can shift risk disclosure from an overwhelming burden to an opportunity for proactive prevention,” Lakhan told Medscape Medical News.
O’Brien, Lakhan and Snyder had no relevant disclosures.
