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Brent Forester, MD, MSc, shares more about the neurocognitive epidemic of our time: dementia. As the baby boomer population ages, we are starting to see a rapid escalation of individuals with neurocognitive disorders both in America and worldwide. 

is the chief of the Division of Geriatric Psychiatry at McLean Hospital and medical director for Dementia Care and Behavioral & Mental Health Population Health Management at Mass General Brigham. He is also associate professor of psychiatry at Harvard Medical School. 

If we don't find a cure or adequate treatments, the number of individuals impacted by dementia could skyrocket to nearly 14 or 15 million Americans by 2050. 

Dementia: The Epidemic of Our Time

The first patient has been dosed in the TRANQUILITY II study of an acute treatment for agitation in patients with Alzheimer disease.

The TRANQUILITY II study, led by BioXcel Therapeutics, focuses on BXCL501, an orally dissolving thin film formulation of dexmedetomidine. In research incorporating multiple measurement scales, BXCL501 has demonstrated statistically significant reductions in agitation with no severe adverse events at doses of both 30 mcg and 60 mcg.

 The US Food and Drug Administration (FDA) granted BXCL501 breakthrough therapy designation for the acute treatment of agitation in connection with dementia in March 2021.

“We believe the recent FDA approval of BXCL501 for the acute treatment of agitation associated with schizophrenia or bipolar I or II disorder in adults has laid a strong foundation for pursuing this Alzheimer’s-related agitation program to potentially address this debilitating symptom for patients,” Robert Risinger, MD, chief medical officer of BioXcel Therapeutics, said in a press release. “Importantly, we are also expanding TRANQUILITY II to more than 10 clinical trial sites in the US, and with no current FDA-approved treatments for agitation associated with this disease, we are making strong and swift efforts to potentially bring BXCL501 and its proven ability to address agitation to this large market.”

TRANQUILITY II is 1 of 2 studies—along with TRANQUILITY III—in BioXcel Therapeutics’ Phase 3 TRANQUILITY program, in which both studies measure the efficacy of BXCL501 in adults aged 65 years and older currently in assisted living facilities or nursing homes. BioXcel has reported that top-line data for TRANQUILITY II is expected in late 2022 or early 2023, and patient enrollment in TRANQUILITY III will begin later in 2022.

BioXcel Therapeutics announces first patient dosed in TRANQUILITY II phase 3 trial for acute treatment of agitation in patients with Alzheimer’s disease

. News release. GlobeNewswire. May 3, 2022. Accessed May 3, 2022.

BioXcel Therapeutics receives FDA Breakthrough Therapy Designation for BXCL501 for the acute treatment of agitation associated with dementia

. News release. BioSpace. March 15, 2021. Accessed May 3, 2022.

Top-line data for study is expected in late 2022, early 2023.

Phase 3 Study on Treatment of Agitation in Alzheimer Disease Doses First Patient

Breaking bad news to patients and those who care for them, a stressful event for clinicians of every specialty, presents special challenges when the bad news is a diagnosis of dementia. One definition of medical 

 is “any information that produces a negative alteration to a person’s expectations about their present or future.”

 A diagnosis of major neurocognitive disorder, or 

 in common language, implies changes that will profoundly alter the present and future for an individual with dementia and their caregivers.

Given the cognitive and emotional consequences of this news, particular attention must be paid both to its initial delivery and subsequent processing. Successful communication about a dementia diagnosis requires a complex conversation that includes both discussion of the diagnosis and planning for the future, and it often must transpire over a series of encounters. Preparation for and implementation of this conversation is widely recognized as one of the most demanding tasks in health care.

Physicians’ approach to the disclosure of bad news has evolved considerably over the past several decades, incorporating contributions from many countries and multiple specialties.

 During the 1950s and the 1960s, a diagnosis of cancer was shared reluctantly—if at all—by many physicians. A survey of 180 hospital physicians in Boston published in 1970 reported that only 25% of respondents “always” informed patients about their malignancy—66% informed their patients “sometimes,” and 9% “never” informed patients of their fatal disease.

An influential book published in 1992 by oncologist Rob Buckman, MD, 

How to Break Bad News: A Guide for Health Care Professionals

, helped transform the discourse from “whether to tell” to “how to tell.”

 In this book, delivery of bad news was presented as a skill that clinicians could both learn and teach. Buckman’s influential 6-point protocol for delivering difficult news will be discussed later in this article.

As a consequence of several factors, the need for effective disclosure and discussion of medical diagnoses in general—and dementia in particular—has gathered new immediacy in our current decade. First, the explosive increase in electronic access to information has meant that patients and families now arrive with more informed assumptions and questions, including questions about new tests and treatments. In the case of dementia, emerging tests are increasing clinicians’ accuracy in earlier and more specific diagnosis. Treatment options have broadened, and many patients wish to know about clinical trials and newly approved therapies.

Second, the 21st Century Cures Act, signed into law by President Barack Obama in 2016, requires that all health care providers give their patients access to all health information available in their electronic health records (EHRs). The immediate accessibility to patients of the information in their EHRs means that patients may first learn about their diagnosis from the online medical record if it has not previously been discussed with them in person by their clinician. Confusion, misunderstanding, and unwarranted anxiety can result when a diagnosis is learned in this way, making it more important than ever for clinicians to time their diagnostic discussion thoughtfully.

Finally, the updated quality measure set for dementia care recently endorsed by the American Psychiatric Association and the American Academy of Neurology includes an element entitled “disclosure of diagnosis.” This measure is defined as the percentage of patients with a diagnosis of a qualifying dementing disorder or disease who have been told (1) that they have dementia and (2) what disease is believed to be causative. The inclusion of this calculation in the measure set reflects the belief that disclosure is a component of good care and the observation that such disclosure often does not occur.

Patients Want Information, But Disclosure is Not Risk-Free

In the management of neurocognitive disorders, there is evidence that patients and their families desire accurate diagnostic and prognostic information. Eighty-seven percent of respondents without cognitive impairment in a recent study indicated a desire to know of a dementia diagnosis. Among individuals referred to a memory clinic or diagnosed with dementia, 84% “considered full disclosure of a diagnosis of dementia preferable.”

Broadly speaking, arguments proposed in favor of disclosure are of 3 types. The 

 creates a duty for clinicians to provide patients with information about their health that is needed in order to make health care decisions and to plan for the future. In this light, failing to disclose a diagnosis as significant as dementia may be seen as unethical. From the standpoint of 

, many additional benefits of disclosure have been suggested (

Surveys indicate that patients believe it is important for them to be told the diagnosis so that they can obtain more information, plan, and participate in discussions of therapeutic options. With information and the perspective of a skilled clinician, patients and caregivers are in a better position to engage in shared decision-making.

Finally, anecdotal evidence supports the idea that disclosure promotes 

 noted that “diagnosis (is) an important transition, as it marks a shift from the uncertainty and ambiguity about the early signs and symptoms of dementia to a phase in which the person with the illness and family members can learn to adapt.”

 reported several cases in which disclosure set the stage for productive psychotherapy leading to relief of anxiety, and to cognitive and behavioral adaptations that improved quality of life. A 66-year-old woman with a strong family history of dementia who presented to him for evaluation of forgetfulness, for example, feared that “health professionals would try to keep information from her and… (that) she would no longer be listened to or involved in decisions relating to her care.” Following the evaluation and the disclosure of her dementia diagnosis, she reported feeling less anxious: “At least I know what it is, I’m not imagining it, and I know what I’m facing.” In her ensuing psychotherapy, “she valued the opportunity to talk about the diagnosis and what it meant to her.” She was able to focus in psychotherapy on “how she could continue to maintain a useful role within her family and social circle, given… her memory dysfunction. This involved negotiating compromises with herself,” which she learned to see as an achievement rather than a failure.

The desire for diagnostic and prognostic information is not independent of expectation, since negative news is more difficult to accommodate. One influential study reported that patients wanted to receive necessary medical information, but also that they were hoping to receive encouraging news.

 Those with serious and advanced disease are often overly optimistic about their own prognosis and less eager to hear bad news.

 Patients’ receptivity to negative news may be affected by how long they expect to live. A study of 214 patients over age 60 with terminal cancer, for example, found that 83% of those who believed they had less than 1 year to live wanted to discuss their prognosis, while only 53% of those who thought they had 2 to 5 years to live wanted to be told their actual prognosis.

 Interestingly, physicians who are in the patient role may illustrate this paradoxical preference to know optimistic news, but avoid discouraging news. In a recent survey, only 72% to 77% of physicians affirmed a wish for disclosure of their own dementia diagnosis; 9% to 13% indicated they would 

 want to be informed; and the remainder were undecided.

For patients with progressive impairment of memory and comprehension, the disclosure of a diagnosis can also produce unanticipated consequences. Indeed, concern has been raised by some clinicians and researchers about potential adverse effects of bad news on individuals with dementia and their caregivers. The diagnosis discussion often includes advice that may be difficult to hear about autonomy, driving, and employment. Long-term care insurance or admission to certain long-term residential facilities, for example, may become unavailable. The diagnosis of dementia is associated with considerable public fear and stigma, and it may undermine a patient’s sense of self-esteem and personal value. Feelings of anxiety, depression, increased vulnerability, hopelessness, and burdensomeness can occur. Faced with the possibility of disability, dependence, and progressive decline, some individuals have even become suicidal.

Three studies illustrate the increase in risk of attempted or completed suicide that has been linked with the early phase of dementia. A large analysis of data from adults aged 50 and older derived from cross-linked registers in Denmark showed a relationship between suicide and the presence of a dementia diagnosis. The correlation of suicide with dementia diagnosis was particularly elevated shortly after diagnosis and was threefold higher among adults aged 70 and older. This correlation remained significant when controlled for the presence of mood disorders. The relative risks were even higher among men aged 50 to 69 (RR=8.5) and women aged 50 to 69 (RR=10.8). This study suggested that the initial interval after a dementia diagnosis might usher in a period of increased suicide risk because 26% of the male suicides and 14% of the female suicides occurred within 3 months of dementia diagnosis.

Another study reviewed findings obtained by linking data from the Georgia Alzheimer’s Disease and Related Dementias registry to data in Georgia’s Vital Records and Violent Death Reporting System. During the study period, 2013 to 2016, 91 individuals with dementia were reported to have died by suicide. In agreement with the observation of Erlangsen and colleagues, one of the identified risk factors identified by Annor and colleagues was a recent diagnosis of dementia.

 Similarly, researchers who studied a large cohort derived from databases associated with the US Department of Veterans Affairs and the Centers for Medicare & Medicaid Services reported on several years of follow-up, which revealed rates for attempted suicide of 0.7% among those with mild cognitive impairment (MCI; 138) and 0.6% of those with dementia (400), compared with only 0.4% of those without MCI or dementia. After adjusting for demographics, medical/psychiatric comorbidities, and earlier diagnosis of MCI or dementia, the suicide attempt risk was found to be highest for those patients with a recent MCI or dementia diagnosis.

The findings of these 3 studies certainly suggest that the interval following a diagnosis of dementia is a time of increased risk for suicide attempts or completed suicide, but they leave unresolved whether the diagnostic disclosure itself increases or decreases that risk.

Caregivers, typically family members, face additional stresses as a result of disclosure of a dementia diagnosis. Informing family members about the patient’s diagnosis inevitably alters the nature of family relationships. Trust and patient confidentiality may become an issue, especially when the patient wants to take charge of informing, or not informing, family members. With disclosure, family and others may treat the patient in a different way, shifting focus from the individual to their disease and undermining traditional lines of authority and decision-making in the family. The potential for patient abuse or abandonment increases. Family caregivers may also experience more anxiety or depression as they anticipate the burden of what may lie ahead. In addition, some family members may develop fears regarding their own actual or perceived cognitive difficulties or their risk for future decline.

Disclosure Presents Obstacles to Clinicians

According to a recent meta-analysis, only 34.2% of general physicians and 48.3% of specialists usually, regularly, or always told PWDs of their diagnosis.

 Furthermore, disclosure that did occur was often couched in vague, euphemistic terms, using words such as “confusion,” “memory problems,” or “slowing down due to aging” rather than more specific clinical terms such as 

Clinicians are reluctant to break bad news for many reasons. Some invoke “therapeutic privilege” out of concern that risks of disclosure outweigh its benefits. Others may defer disclosure to avoid burdening a patient with bad news.

 Clinicians sometimes defer discussion of a diagnosis that may be stressful, stigmatizing, or destructive to the doctor/patient relationship. The fear that treatment options are of limited value may discourage disclosure. At times, family members have urged the clinician to withhold a fearsome diagnosis from the patient out of concern that disclosure will increase the difficulty of care at home.

Clinicians, too, may have difficulty handling their own discomfort and sense of hopelessness about a dementia diagnosis. They may explain their avoidance of disclosure on the basis of diagnostic uncertainty. A study of 343 physicians practicing in outpatient hospice settings found that physicians tended to be inaccurate in their prognoses, and that prognostic errors were more likely to be overly optimistic than overly negative. In addition, prognostic errors tended to increase with increased duration of the doctor/patient relationship.

Frequently, the reason for the reluctance is the lack of training about how best to disclose a difficult diagnosis, but appropriate clinician training can dispel clinicians’ reservations and improve their disclosure skills. A Cochrane review and meta-analysis of randomized controlled trials and controlled before-and-after trials showed that communication skills training could increase the use of open-ended questions and improve empathy in oncology clinicians.8 More recently, a meta-analysis of 17 studies demonstrated that communication skills training improves physician proficiency and confidence in delivering difficult news.

 summarizes important barriers to clinicians’ disclosure of a dementia diagnosis.

How to Disclose the Diagnosis of Dementia

The actual disclosure process and discussion of a dementia diagnosis can be very stressful events for everyone involved: the patient, the caregivers, and the health care providers. To increase the likelihood of a positive outcome, the clinician can prepare for the clinical encounter by recognizing that disclosure is a process rather than an event, by examining the barriers to disclosure, and by providing information and resources in a way that considers the needs and preferences of the patient and care system.

Even cognitively intact individuals misunderstand or forget much of the clinical information conveyed during a medical discussion. During a disclosure process, caregivers may be personally overwhelmed or distracted by the patient’s discomfort or anxiety. The patient is at an even greater disadvantage in terms of comprehension and knowledge retention. Without appropriate accommodations, they may fail to recall the results, analysis, and suggestions shared by the clinician. It is easy for the patient and caregivers to leave a disclosure discussion with confused or incorrect information.

Absorption and acceptance of difficult information takes time and a recurrent discussion process that gradually evolves and deepens as additional questions arise, as new symptoms evolve, and as new data become available. The initial discussion, therefore, should be conceptualized as the beginning of a dialogue between patients, caregivers, and the health care system. When the initial discussion takes place in a specialist’s office and the patient will be referred back to primary care for follow-up, it may be necessary to direct further questions to the primary care clinician, with an offer of additional support to the primary care clinician from the evaluating specialist.

Delivering complex and disturbing information effectively requires clinicians to overcome a variety of obstacles.

 Clinicians are understandably reluctant to share the bad news of a progressive and usually terminal diagnosis. This is especially the case when the clinician feels the diagnosis is untreatable or that the patient will be unable to make use of the information imparted.

 When the diagnosis of cognitive impairment is uncertain or incomplete, a clinician may delay discussion while awaiting further test results or additional consultations.

Many primary care clinicians and general psychiatrists find themselves in the position of discussing a dementia diagnosis despite limited knowledge of the symptoms, causes, treatment options, and prognosis of the multiple diseases that present with cognitive symptoms. Limited knowledge can create reticence about what to say or how to be helpful. In an effort to delay or avoid creating pain for a patient, clinicians may speak in euphemistic terms, talking about “senior moments” or “age-related memory loss” rather than giving a more precise name to symptoms severe enough to warrant a more accurate designation. The brief time allotted to an appointment can discourage a clinician from tackling a conversation that is unlikely to be finished easily or quickly.

Some evidence suggests, too, that clinicians’ likelihood of disclosing a dementia diagnosis can be influenced by racial and ethnic factors. Lin and colleagues, for example, reported that a higher proportion of non-Hispanic Black and Hispanic patients with dementia were unaware of their condition.

 Recognizing hazards such as these will help clinicians avoid engaging in an incomplete or uninformative discussion.

Meeting the patient’s specific needs requires preparation. First, clinicians can assess patients’ and caregivers’ awareness of relevant symptoms, related health concerns, and lifestyle issues. The values and beliefs of patients and caregivers will affect the ensuing discussion. Understanding the preferences of patients who retain the capacity to make meaningful choices allows clinicians to frame or modify a disclosure discussion and tailor the content to the level of detail desired by the patient.

Families and patients very often come to the disclosure appointment with a strong suspicion regarding an explanation for the behaviors and deficits they have observed. Confirming their hunches can be sad and anxiety-provoking, but also, at a certain level, reassuring and validating. A clear diagnosis may allow caregivers to understand and avoid blaming a cognitively impaired individual whose behavior has become inattentive, inconsiderate, bizarre, uncooperative, frustrating, or even aggressive. An additional decision for more capable patients is who to involve and when they should be included in the sharing of information. When the patient with dementia no longer retains capacity to make appropriate choices in this respect, the clinician will begin discussion with the appropriately chosen surrogate decision-maker.

In discussing diagnosis, clinicians can avoid running short on time by making sure an adequate appointment has been allotted. The discussion, too, can be conducted over more than 1 visit

 following the initial disclosure visit, with an additional visit scheduled in the near future. The level of detail disclosed should match the comprehension and language skills of the participants. Understanding of the important information can be verified through using a “teach back” approach. Clinicians can invite questions and note the emotional reactions of patient and caregiver. Printed resources offer the patient and caregiver additional help in understanding, retaining, and digesting the information discussed. Such materials must be appropriate to the patients’ and caregivers’ language, literacy, and comprehension. A follow-up plan and planned future appointments, whether in specialty or primary care, will help patients and caregivers feel supported during the stressful time of adjustment that follows establishment of a serious medical diagnosis.

The disclosure discussion is grounded in shared, objective, and understandable information. Patients’ reported symptoms, results of diagnostic tests, clinicians’ opinions about the cause of symptoms and which cause is most probable, the expected course of the illness, and the treatment options should all be reviewed, with the goal of reaching a consensus about what is known and what is to be expected. Clinicians, and perhaps especially generalists, may focus excessively on diagnosis, while caregivers’ deeper concerns are about how to obtain emotional and practical supports.

 Caregivers often raise questions about important planning issues such as what to do about employment, residential plans, home safety, driving, financial decisions, and end-of-life planning. Discussion of advance planning, including estate decisions, advance directives, and a will, may be appropriate.

A burning question, often, is how long the patient is likely to survive and what symptom progression should be anticipated. One useful tool for survival prediction was developed and made accessible as a web-based application by Haaksma and colleagues.

 offers an additional schema for discussing the expected symptoms. Keep in mind that the earlier these discussions take place, the more meaningful the patient’s involvement will be in the planning.

One popular framework for the disclosure of difficult news is the SPIKES approach (

Adaptation of this intervention to discussion of a dementia diagnosis has been described by Peixoto and colleagues,

the interview for a patient with dementia often requires the presence of a trusted family member because cognitive impairment may limit understanding of the diagnosis discussion. Other companions or clinicians can play helpful roles in the communication as well. Assessing the patient’s 

 of this diagnosis requires evaluation of language and comprehension capacity for understanding complex information. When comprehension is sufficiently intact, the discussion should be addressed to the patient. An attempt at obtaining the patient’s 

 is possible even when comprehension is somewhat impaired, and a patient who prefers not to have a diagnostic discussion may wish to delegate this to a caregiver with whom a later communication can be scheduled. Giving 

to the patient with dementia is a more palatable experience when hope is nurtured by emphasizing some aspects of dementia that are less negative. These include the variable, sometimes slow progression; preservation of personality and capacity for enjoyment in many individuals; availability of palliative treatments; and options for preserving autonomy to the extent possible. Addressing the patient’s 

 with empathic responses includes addressing the emotions of the caregiver, who may be experiencing great distress. And discussion of 

 includes options for rehabilitation and residential choices; legal and safety issues including the stressful, but necessary discussion of driving; and distribution of written information and lists of resources.

The ongoing care of a patient with dementia is a team effort requiring participation of the patient, caregivers, health care providers, and others who will each contribute specialized services. Clinicians can prepare patients and their caregivers for the future by providing lists of helpful books, websites, advocacy organizations, care managers, adult day programs, options for emergency or respite care, and other resources that they may need as the clinical status of the patient evolves.

An important pitfall to avoid with cognitively impaired individuals is that of inappropriate redisclosure. Although a surrogate decision-maker must remain aware of the patient’s deficits, the patient may be unable to understand and retain that information. Repeated questions from the patient about what is wrong, met with a repeated upsetting diagnostic label such as 

may serve to heighten anxiety without beneficial learning. Each new disclosure may be met with shock, fear, or sadness, and these disturbing emotions may linger even after the individual’s cognitive awareness of the cause has faded. It is not necessary or advisable to reexpose an individual to stressful information that cannot be processed and stored. When such questions come up from a patient who has already been informed of the diagnosis, it is preferable to respond with reassurance and redirect the conversation to other topics.

Finally, affirmation of appropriate hope is one of the most valuable contributions clinicians can make. One of the deepest fears the patient will have when diagnosed with a progressive illness is the fear of dependence and possible abandonment. Although the likelihood of a cure cannot be offered at present, the reassuring confirmation of ongoing care and non-abandonment can be provided. There are often means for reducing suffering such as care management, companionship, respite care, symptomatic medications, nonpharmacologic therapies, and exercise. Clinicians can offer some reassurance by emphasizing that much of an individual’s essence remains far into the course of a dementing illness.

With preparation and care, disclosure of dementia diagnosis provides an opportunity for clinicians to educate, relieve suffering, and help patients and caregivers prepare for the future. At present, there is no cure for the common causes of dementia. However, the condition’s increasing prevalence, the growing accessibility of medical information, and our patients’ right to know of their diagnosis require that we engage our patients and their caregivers early in this discussion. Doing so can ease a stressful journey and provide essential support.

is a professor of clinical psychiatry and vice chair of clinical business development in the Department of Psychiatry and Behavioral Sciences at The Johns Hopkins University School of Medicine. 

is clinical director of the Division of Geriatric Psychiatry and Neuropsychiatry, and associate professor of psychiatry and behavioral sciences at Johns Hopkins Medicine in Baltimore, Maryland. 

is a clinical assistant professor at Boston University School of Medicine, an adjunct clinical assistant professor at Tufts University School of Medicine, and a part-time lecturer at Harvard Medical School in Boston, Massachusetts. 

holds the Swank Foundation Endowed Chair in Memory Care and Geriatrics, Christiana Care Health System, in Wilmington, Delaware, and is a professor of psychiatry and human behavior at Sidney Kimmel Medical College, Thomas Jefferson University, in Philadelphia, Pennsylvania.

Breaking bad news: why is it still so difficult?

Communicating sad, bad, and difficult news in medicine

Physician management of dying patients: an exploration

5. Schultz SK, Llorente MD, Sanders AE, et al. 

Quality improvement in dementia care: dementia management quality measurement set 2018 implementation update

6. van den Dungen P, van Kuijk L, van Marwijk H, et al. 

Preferences regarding disclosure of a diagnosis of dementia: a systematic review

7. Mariani E, Vernooij-Dassen M, Koopmans R, et al. 

Shared decision-making in dementia care planning: barriers and facilitators in two European countries

8. Moore PM, Rivera S, Bravo-Soto GA, et al. 

Communication skills training for healthcare professionals working with people who have cancer

The psychological consequences of learning a diagnosis of dementia: three case examples

10. Kutner JS, Steiner JF, Corbett KK, et al. 

11. Lee SJ, Fairclough D, Antin JH, Weeks JC. 

Discrepancies between patient and physician estimates for the success of stem cell transplantation

Prognosis communication in serious illness: perceptions of older patients, caregivers, and clinicians

Hospital-diagnosed dementia and suicide: a longitudinal study using prospective, nationwide register data

14. Annor FB, Bayakly RA, Morrison RA, et al. 

Suicide among persons with dementia, Georgia, 2013 to 2016

15. Günak MM, Barnes DE, Yaffe K, et al. 

Risk of suicide attempt in patients with recent diagnosis of mild cognitive impairment or dementia

16. Low LF, McGrath M, Swaffer K, Brodaty H. 

Communicating a diagnosis of dementia: a systematic mixed studies review of attitudes and practices of health practitioners

Disclosing a dementia diagnosis: a review of opinion and practice, and a proposed research agenda

18. Werner P, Karnieli-Miller O, Eidelman S. 

Current knowledge and future directions about the disclosure of dementia: a systematic review of the first decade of the 21st century

Diagnosis disclosure in dementia: understanding the experiences of clinicians and patients who have recently given or received a diagnosis

What are the preferences of patients attending a memory clinic for disclosure of Alzheimer's disease? 

Exploring the experience of the disclosure of a dementia diagnosis from a clinician, patient and carer perspective: a systematic review and meta-ethnographic synthesis

Subjective experiences of cognitive decline and receiving a diagnosis of dementia: qualitative interviews with people recently diagnosed in memory clinics in the UK

23. Lohmeyer JL, Alpinar-Sencan Z, Schicktanz S. 

Attitudes towards prediction and early diagnosis of late-onset dementia: a comparison of tested persons and family caregivers

Extent and determinants of error in doctors' prognoses in terminally ill patients: prospective cohort study

Interventions to improve the breaking of bad or difficult news by physicians, medical students, and interns/residents: a systematic review and meta-analysis

26. Aminzadeh F, Molnar FJ, Dalziel WB, Ayotte D. 

A review of barriers and enablers to diagnosis and management of persons with dementia in primary care

27. Bradford A, Kunik ME, Schulz P, et al. 

Missed and delayed diagnosis of dementia in primary care: prevalence and contributing factors

Racial and ethnic differences in knowledge about one’s dementia status

29. Grossberg GT, Christensen DD, Griffith PA, et al. 

The art of sharing the diagnosis and management of Alzheimer's disease with patients and caregivers: recommendations of an expert consensus panel

30. Foley T, Boyle S, Jennings A, Smithson WH. 

“We’re certainly not in our comfort zone”: a qualitative study of GPs' dementia-care educational needs

31. Haaksma ML, Eriksdotter M, Rizzuto D, et al. 

Survival time tool to guide care planning in people with dementia

32. Reisberg B, Ferris SH, de Leon MJ, Crook T. 

The Global Deterioration Scale for assessment of primary degenerative dementia

33. Baile WF, Buckman R, Lenzi R, et al. 

SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer

34. Peixoto VGMNP, Diniz RVZ, Godeiro CO. 

SPIKES-D: a proposal to adapt the SPIKES protocol to deliver the diagnosis of dementia

How can you communicate the diagnosis in a way that relieves suffering and helps patients and their caregivers prepare for the future?

The Science, Ethics, and Art of Disclosing a Dementia Diagnosis

A recent study found that exposure to lithium among older adults was linked to a decreased risk of developing dementia and its subtypes, Alzheimer disease (AD) and vascular dementia (VD).

The retrospective cohort study, conducted by researchers from the University of Cambridge and the Cambridgeshire and Peterborough NHS Foundation Trust, aimed to identify preventive interventions that could help delay the onset of dementia, as dementia is the leading cause of disability and death among older adults in Western populations. Lithium has been suggested as a treatment option, but little research has investigated this possibility at the population level. To assess the role of lithium, the investigators collected data from the electronic clinical records of 548 patients who had been exposed to lithium and 29,070 patients who had not been exposed to lithium between January 1, 2005, and December 31, 2019. Among the participants, 40.2% were male, and the mean age was 73.9 years, with all patients being at least 50 years old at baseline. In the lithium-exposed group, 9.7% of patients received a diagnosis of dementia, including 6.8% with AD and 2.6% with VD. In the group that had not been exposed to lithium, 11.2%, or 3244, received a diagnosis of dementia, including 2276 with AD and 698 with VD. The investigators used Cox proportional hazard models to analyze the data, finding that lithium exposure was associated with a decreased incidence of dementia, AD, and VD, and in both short-term (≤1-year) and long-term (>5-year) exposure durations. Although no significant changes were identified in immediate durations, the longer the duration of lithium exposure, the lower the risk of developing dementia.

The study’s main limitation, according to the investigators, was that 73% of patients in the lithium-exposed group had been diagnosed with mania/bipolar affective disorder (BPAD), which itself is a considerable risk factor for dementia. Although this might be expected to cause an increase in dementia in the lithium-exposed group, the investigators found the opposite. They suggested that, given the specific nature of the lithium-exposed group in this study, researchers should be cautious in extending the findings of this study to the general population.

“Our findings support the possibility that lithium treatment could decrease the risk of developing dementia and supports the need for further randomized controlled trials (RCTs) to test the efficacy of lithium as a disease-modifying drug in dementia,” the investigators concluded.

1. Chen S, Underwood BR, Jones PB, et al. 

Association between lithium use and the incidence of dementia and its subtypes: a retrospective cohort study

Research also finds surprising results in patients with bipolar affective disorder.

Study Links Lithium With Lower Risk of Dementia

Medical approaches to treating dementia and Alzheimer disease have been mostly unsuccessful. In this Mental Health Minute, Peter J. Whitehouse, MD, PhD, recommends that clinicians go beyond biomedical approaches. Instead, he advocates a suite of public health approaches, based on the research in his latest book, 

American Dementia: Brain Health in an Unhealthy Society

is professor of Neurology and Psychiatry at Case Western Reserve University, and professor of Medicine at the University of Toronto. Along with Daniel R. George, PhD, MSc, of 

How could you incorporate public health into your practice? 

Share comments with your colleagues by emailing 

. Comments may be shared online pending review and editing for style.

Decades of efforts to find effective medical treatments for dementia and Alzheimers disease have largely failed. Would a public health approach be more effective? 

New Directions for Alzheimer and Dementia Treatment

When it comes to Alzheimer disease (AD) and dementia, treatment gets more attention than prevention. Maybe it is time for that to change, because by combining preventative measures, it is possible to improve up to 40% of the overall risk factors for diseases like AD.

In this Mental Health Minute, James Galvin, MD, MPH, suggests simple but evidence-supported behavioral plans that psychiatrists can recommend to their patients.

is a professor of neurology at the University of Miami Miller School of Medicine and founding director of the Comprehensive Center for Brain Health.

How do you help your patients maintain their brain health? 

What advice can clinicians give patients to lower their overall risk for neurodegenerative diseases? 

How to Reduce the Risk of Late-Life Dementia—Starting in Childhood

The English word apathy originates from the Greek word apathes, which means “without pathos or feeling,”

 but scholars have shared various definitions. For example, Robert S. Martin, MD, defined apathy as a syndrome of primary motivational loss that is not attributable to emotional distress, intellectual impairment, or 

 According to Drs Richard Levy and Bruno Dubois apathy is the quantitative reduction of self-generated voluntary and purposeful behaviors, which are observable and can be quantified.

 In addition, the underlying mechanism(s) responsible for apathy may be seen as dysfunctions occurring at the level of elaboration, execution, and control of goal-directed behaviors. According to an international consensus criterion, apathy is defined as a disorder of motivation in which the symptoms are present for at least 4 weeks.

 In addition, 2 of the following 3 should be present: reduced goal-directed behavior, reduced goal-directed cognitive activity, and reduced emotions. Furthermore, these symptoms cause clinically significant impairments in personal, social, occupational, or other important areas of functioning, with such symptoms not exclusively explained by or due to other causes (ie, physical disabilities [such as blindness or loss of hearing], motor disabilities, diminished level of consciousness, or direct physiological effects of a substance [such as a drug of abuse or a medication]).

 of individuals who have no cognitive deficits.

 It is also seen among individuals with major depressive disorder, schizophrenia, strokes, multiple sclerosis, and traumatic brain injury. Apathy is more prevalent among individuals with neurodegenerative disorders than in those free of such disorders.

Apathy has been noted throughout the spectrum of neurocognitive disorders (

 The prevalence rates for apathy among individuals with mild cognitive impairment ranges from 

 Apathy is also the most frequently reported behavioral symptom among individuals with dementia. The results of one study showed that individuals with frontotemporal dementia (FTD) and vascular dementia (VaD) report more severe apathy than individuals with Alzheimer disease (AD).

Apathy usually appears early in dementia and tends to persist throughout; it is associated with longer illness duration and it worsens with the 

 Risk factors for developing apathy include older age and greater severity of cognitive impairment. Akyol et al found that apathy was correlated with the degree of cognitive impairment among individuals with AD and VaD, but not with FTD; but apathy did not correlate with age or gender in individuals with AD, FTD, and VaD. Additionally, the degree of apathy correlated with the level of functional impairment and dementia severity across all 3 types of dementia.

Individuals with dementia who present with apathy often have more rapid cognitive decline and are more impaired in their activities of daily living.

 In addition, apathy increases the risk for earlier institutionalization among individuals with dementia.

 Distress is also significantly higher among caregivers of individuals with dementia who have apathy, when compared with individuals with dementia without it.

Emerging evidence indicates that apathy in individuals with dementia occurs due to a complex interaction among neuroanatomy, neuropathology, neurochemistry, and genetics.

 Among individuals with AD, apathy is associated with an increased neurofibrillary tangle burden in the parahippocampal, frontal, and parietal regions, in addition to the anterior cingulate gyrus. Emerging evidence indicates that the severity of apathy is also associated with amyloid plaque burden, especially in bilateral frontal cortices and the right anterior cingulate gyrus along with 

One study that evaluated the cerebrospinal fluid (CSF) biomarkers among individuals with AD showed that apathy was significantly correlated with tau and p-tau, but not with amyloid β١–٤٢.

 Another study examined regions of cortical thinning and CSF biomarkers (amyloid-β ١-٤٢, total tau, and phosphorylated tau) among 3 groups—clinically normal elderly individuals, individuals with mild cognitive impairment, and individuals with mild AD dementia with apathy—and found that reduced baseline inferior temporal cortical thickness was predictive of increasing apathy over time.

 The investigators of this study did not find any association between CSF biomarkers and the severity of apathy in cross-sectional or longitudinal analyses.

Another study found that individuals with AD and apathy had a loss of white matter integrity in the genu of the corpus callosum when compared with individuals with AD without apathy.

 In addition, the loss of white matter integrity in the genu, body, and splenium of the corpus callosum was negatively correlated with the severity of apathy among individuals with AD. Neuroradiological studies indicate that the dysfunction of the anterior cingulate cortex is the strongest anatomical correlate of apathy in AD, whereas lesions of the basal ganglia are the most common correlates of apathy in cerebrovascular disorders.

Neuroimaging studies indicate that the apathy among individuals with behavioral variant of FTD is associated with prominent atrophy in: the dorsal anterior cingulate cortex, dorsolateral prefrontal cortex, right caudate (including the ventral striatum), right temporoparietal junction, right posterior inferior and middle temporal gyri, and left frontal operculum-anterior insula region.

A recent meta-analysis that analyzed data from 41 studies indicated that apathy is associated with hypometabolism and a decrease in gray matter volume in the left inferior frontal gyrus.

 The investigators also found altered brain perfusion and decreased gray matter volume in the anterior cingulate cortex among individuals with AD, and decreased gray matter volume in the inferior frontal gyrus and parietal cortex among individuals with FTD. These findings indicate that apathy occurs due to a cortical dysfunction of areas involved with executive cognitive processing (action planning) and emotional regulation (autoactivation and reward processing).

Individuals with AD and apathy have been found to have reduced dopaminergic activity in the putamen, reduced acetylcholine in the lateral frontal cortex, and lower levels of plasma gamma-aminobutyric acid.

 In evaluating the association between apolipoprotein E ɛ4 allele and apathy in probable AD, investigators found that the presence of this allele was indeed significantly associated with apathy in these individuals.

Among individuals with dementia, the assessment of apathy is often complicated. It is particularly difficult to distinguish between reduced motivation to do things due to apathy and the loss of ability or motivation secondary to cognitive dysfunction. Additionally, there may be overlap between symptoms of apathy and depression (

Apathy occurs throughout the spectrum of neurocognitive disorders, but it is easy to mistake for other conditions, like depression. How can clinicians identify apathy, and treat it?

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