Article In Brief
Results of a case-control study of patients with dementia may help clinicians more effectively screen for suicide risk among that population and recommend interventions.
People with dementia overall have no higher risk of dying by suicide than the general population, but the risk of suicide is significantly increased in three groups of people with dementia: those within the first three months of their diagnosis, individuals with a history of psychiatric illness, and those diagnosed with early-onset dementia (younger than 65 years).
These findings, from a large, population-based, case-control study conducted by researchers in England and published online on Oct. 3 in JAMA Neurology, may help neurologists, neuropsychiatrists, and others more effectively screen patients with dementia for suicide risk and recommend appropriate interventions, experts told Neurology Today.
Investigators from the University of Nottingham, England, and the Wolfson Institute of Population Health in London analyzed electronic medical records from 2001 through 2019 for all patients in England 15 and older who had a cause of death coded as suicide or “open verdict” (a large majority of open verdicts are attributable to suicide). The study included 594,674 patients, of whom 14,515 died by suicide.
Among those who died by suicide, 95 patients (1.9 percent) had a recorded dementia diagnosis. There was no overall significant association between a dementia diagnosis and suicide risk (adjusted OR, 1.05). But compared with adults who had not been diagnosed with dementia, suicide risk was nearly threefold higher among those diagnosed with dementia before age 65 (aOR, 2.82), more than twofold higher within the first three months of diagnosis (aOR, 2.47), and significantly higher in those with comorbid psychiatric illness (aOR, 1.52). Adults younger than 65 who were within three months of diagnosis were of particularly high risk, with a suicide risk nearly seven times higher than their peers without dementia (aOR, 6.69).
Additionally, the researchers found that adults with dementia who died by suicide were nearly 10 years younger at their time of death than those with dementia who died of other causes (median age 79.7 years vs. 87.9 years).
Previous studies have come to differing conclusions about the risk of suicide among people with dementia. For example, a cohort study in Denmark between 1990 and 2000 found an increased suicide risk in patients with dementia compared with those without the disease, while a more recent cohort study by the same group, including data from 1980 to 2016, actually found a decreased suicide risk among people with dementia overall, although it found a threefold elevated risk during the first month after diagnosis. And a Korean study, which also found no significant association between dementia and suicide risk, may have been confounded by the inclusion of both dementia and mild cognitive impairment (MCI).
“For some time, there have been competing signals about dementia and suicide risk,” said Hal Wortzel, MD, director of neuropsychiatric consultation services and co-director of the VA Suicide Risk Management Consultation Program at VA Rocky Mountain Mental Illness Research, Education, and Clinical Center (MIRECC). “This study helps us to understand those competing signals. It's helpful when the scientific literature hooks up with common sense. Dementia is a hard diagnosis to receive, and that initial adjustment period is a high-risk period for suicide. That's probably even harder when you receive the diagnosis at a relatively young age, and the risk is also elevated when you have a history of other psychiatric illness. These findings offer clinicians some guidance as to how best to screen their patients with dementia for suicide risk.”
Neuropsychiatrist and behavioral neurologist Trey Bateman, MD, MPH, assistant professor of neurology and psychiatry at Wake Forest Baptist Medical Center, praised the size and rigor of the study.
“It confirms what many of us expected to see,” he said. “Early-onset is different than later-onset dementia, and the immediate grief and stress and impact of a diagnosis is going to be greatest when it's first made. These findings also indirectly get at something else we've seen in past studies, which is that the risk of dying by suicide is greater in mild dementia. That fits with an increased risk when the diagnosis is made, rather than five years after diagnosis.”
Suicide risk is something that all neurologists should be aware of, Dr. Bateman noted.
“The risk is not just with dementia; we know that many neurological conditions are also associated with an increased risk of suicidal ideation and dying by suicide,” he said.
In fact, the 2020 Danish cohort study that found no increased overall risk of suicide among people with dementia also found a significantly increased risk of suicide in patients with several other neurologic conditions, including amyotrophic lateral sclerosis (ALS), Huntington disease, multiple sclerosis (MS), and epilepsy.
“More and more often these days, patients have discussed physician-assisted suicide with me,” said James Noble, MD, FAAN, associate professor of neurology in the Taub Institute for Research on Alzheimer's Disease and the Aging Brain and the G.H. Sergievsky Center at Columbia University Irving Medical Center in New York. “It comes up even in the absence of a depression conversation or screening. They'll say, ‘I know what I would do, I would go find a place and be done with it,’ and they'll name off places that they think have physician-assisted suicide.”
Dr. Noble, who also is the author of “Navigating Life with Dementia,” a Brain & Life Book published by the American Academy of Neurology in partnership with Oxford University Press, said he takes time to dig into those questions and understand patients' motivations.
“Often, they describe what they've seen other people endure, and say things like, ‘I don't want my disease to be burdensome to someone else,’” he said. “These are often people who are quite well informed and still in the very early stages of the disease, if they've even been officially diagnosed yet.”
When to Screen
How often should neurologists screen their patients with dementia for suicide risk? For Dr. Bateman, suicide risk screening is a standard part of his initial patient evaluation, and he includes it intermittently during follow-up evaluations.
“I believe that the best practice for a neurologist is not to make assumptions, like ‘This person doesn't fit this rubric, so I don't need to be worried about suicide in this case,’” he said. “And we know from the psychiatric literature that asking people if they have thoughts of self-harm or suicide does not increase the risk of them acting on any thoughts they may have.
Dr. Bateman added that “neurologists across the board, not just dementia specialists, would do well to have a proper ability to identify, assess, and care for people with suicidal ideation.”
Frequency of screening may depend both on whether a patient falls into one of the more elevated risk categories and the clinician's assessment of the patient's overall state of mind.
“Given the data that's in this study, if you have a patient under 65 who has just been diagnosed with something like Alzheimer's disease, it might be prudent to screen them for suicide risk at every visit,” Dr. Wortzel said. “If you get to know the patient better and sense that they are adapting well and have a good support system, it may become less necessary to screen them at every encounter as compared with someone for whom you get a sense that they are having a hard time adjusting. In that case, you might want to be screening more regularly.”
W. Curt LaFrance Jr., MD, MPH, FAAN, director of neuropsychiatry and behavioral neurology at Rhode Island Hospital and professor of psychiatry and neurology at Alpert Medical School of Brown University, said he screens his patients with dementia at every visit.
“People change,” he said. “We are dynamic creatures. Because a patient answered no to [a] risk question at their last visit, that doesn't mean that things can't change with certain life events and stressors. Sometimes suicidal ideation is a chronic pattern, but other times it is a new, acute, reactive thought.”
Different tools are available to clinicians.” In our program, usually we approach suicide risk assessment starting with screening and graduating to a comprehensive risk assessment when someone screens positive,” Dr. Wortzel said.
A number of structured self-report measures exist, such as the Patient Health Questionnaire 9, the Columbia-Suicide Severity Rating Scale, and the National Institute of Mental Health's Ask Suicide-Screening Questions Toolkit.
Involving the patient's family in these discussions also is important, Dr. LaFrance said. “In my clinic, I let patients and family members know that there are no taboo topics here,” he said. “In order to demystify issues like suicidality, things that aren't typically discussed in common conversation, the more comfortable the clinician is, the more comfortable the patient and their loved ones are going to be. People shy away from these sensitive topics, and once the clinician engages the patient and family member, it's often a relief that they can let it off their chests.”
If a patient screens positive for elevated suicide risk on one of the assessment tools described above, what's next?
“This can be a challenge for many neurologists: if you assess for suicide risk, then you have to be able plan and provide help for those who screen positive, and that's not something that is central to the training of most neurologists,” Dr. Bateman said. “We are exposed to it in our training, of course, but not in the same way that our psychiatric colleagues are. It takes extra work to be comfortable with what you do across the spectrum of suicidal ideation.”
Who Is at Greatest Risk?
Dr. Bateman recommends risk stratification as the next step. “Thoughts of suicide can range from passive suicidal ideation—thoughts like, ‘Life isn't very good, and it would be OK if I didn't wake up tomorrow,’ to active suicidal ideation with both intent and planning,” he said. “Dealing with a person who has chronically elevated suicide risk, as in having diagnosed depression for decades and thoughts of not wanting to wake up, is different than dealing with a person who comes into your office and tells you, ‘I'm thinking of killing myself, and I have a gun at home.’”
Although tools like those mentioned above can effectively screen to elevated suicide risk, there is unfortunately no tool that can effectively and reliably stratify risk, Dr. Wortzel said.
“They cannot answer the more critical questions about whether someone is at high acute risk for suicide, with the intent, desire, plans, and means to act on these ideas,” he said. “Is this someone who is struggling with their diagnosis and probably needs additional mental health support and follow-up in the next several days or a week, or is this someone at such acute risk that you need to get them to the emergency department or an inpatient setting because they are incapable of maintaining their own safety? That is where clinical judgment comes in.”
Dr. LaFrance also looks for “protective factors.”
“If a patient endorses suicidal ideation but no intent, I'll ask them, ‘What keeps you from doing it?’ If the person says that it's against their religion, or they don't want to hurt their family, that is a protective factor statement,” he said. “But if the person says, ‘I don't know why I don't,’ that is a person who is at higher risk.”
The Veterans Administration and US Department of Defense offer clinical practice guidelines for suicide prevention, including identification of risk and evaluation of risk, and the Rocky Mountain MIRECC has quarterly webinars related to the guidelines and how to implement them. For patients who are veterans, they also offer a free suicide risk management consultation program.
If neurologists assess that the patient is at chronic elevated risk for suicide, Dr. Bateman said, they should make sure that the patient has access to psychiatric resources and, ideally, is under the care of a neuropsychiatrist or general psychiatrist.
“If they have a plan and intent, on the other hand, you can't let them leave your office,” he said. “If necessary, you may need to initiate forced evaluation and involuntary commitment.”
“In our practice, many of us are neuropsychiatrists and can take on behavioral symptom management ourselves,” Dr. Noble said. “But for patients who need more frequent visits, we work with colleagues in our center in geriatric psychiatry.”
That's a resource that many neurologists, especially those who are in smaller practices and not affiliated with a larger tertiary care center, may not have.
“But many neurologists do have some kind of contact with colleagues who are psychiatrists or neuropsychiatrists, or social workers or pastoral counselors,” Dr. LaFrance said. “Building these relationships is very important for a neurology clinical practice.”
In some ways, a dementia diagnosis can confound some of the traditional warning signs of suicide risk. For example, behaviors such as “making preparations”—putting personal business in order, giving away cherished possessions, and making a will—often are listed as suicide warning signs, but these also are things many people diagnosed with dementia want to do before their disease progresses to the point that they won't be able to do them.
“There are some practical and contextually appropriate things that a person with these diagnoses should be doing to make sure their end-of-life wishes are articulated at an early stage of their illness when they can still communicate them,” Dr. Wortzel said.
“But we also want to be vigilant about when it seems to spill over into something more immediate, such as a person with a very new diagnosis early in their disease giving away their pets or sending farewell letters. That might be a warning sign that they are planning something on a shorter timeline. This is an area that creates a lot of blurred lines; getting a diagnosis such as dementia naturally leads to thoughts about death and dying, and planning for the end is common. While it may morph into suicidal ideation in that group, many of them will have no intent or plan to act on those thoughts.”
Dr. Wortzel recommends that neurologists also understand the risks associated with involuntary hospitalization, particularly for someone with dementia.
“As clinicians start to be asked to do something new, like suicide risk assessment, which is anxiety provoking, some folks are going to screen positive,” he said. “That can make clinicians anxious, and sometimes that will result in a hospitalization that wasn't really necessary.
“We know that people with dementia often say that their greatest fears include loss of dignity and loss of autonomy. If we hospitalize them when it's not necessary, that can bring some of those fears to life. And being taken out of their home environment can be particularly distressing and destabilizing for someone with dementia. When a hospitalization is indicated, then it's indicated, but we want to be judicious so that we don't create a situation where folks won't reach out for help or engage in the kinds of support that hopefully help people more adaptively adjust to a really hard diagnosis.”