People Diagnosed With Early Onset Dementia Are at Higher Risk for Suicide

New findings highlight the need for diagnosis and support in people diagnosed with Alzheimer’s disease and other types of dementia.

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Nearly six million people in the United States have Alzheimer’s disease or another type of dementia.Yaroslav Danylchenko/Stocksy

The risk of suicide is nearly seven times higher after a diagnosis of young-onset (under the age of 65) dementia, according to a new UK study published online October 3 in JAMA Neurology. The risk of suicide was also higher within the first few months of diagnosis and in people who had previously been diagnosed with depression or anxiety.

“These findings suggest that memory clinics should particularly target suicide risk assessment to patients with young-onset dementia, patients in the first few months after dementia diagnosis, and patients already known to have psychiatric problems,” said the study's lead author, Danah Alothman, BMBCh, MPH, of the University of Nottingham, in a press release.

“The findings of this study are important for helping to raise public awareness about how devastating it is to receive a diagnosis of dementia, especially early-onset forms,” says Christina Hugenschmidt, PhD, an associate professor of gerontology and geriatric medicine at Wake Forest University School of Medicine and the director of the memory counseling program at Atrium Health Wake Forest Baptist, both in Winston-Salem, North Carolina, who was not part of this study.

This research provides further evidence that the risk of suicide is increased after a diagnosis of dementia and adds understanding that a diagnosis of early-onset dementia raises this risk even further, says Dr. Hugenschmidt.

200,000 People in the U.S. Have Young-Onset Dementia

Dementia is the loss of cognitive functioning, which includes things like the ability to think, remember and reason, to the point where it interferes with a person’s daily life, according to the National Institute on Aging.

Types of dementia include Alzheimer’s disease, Lewy body dementia, vascular dementia, and Parkinson’s disease, per the Centers for Disease Control and Prevention (CDC).

Signs and symptoms of dementia can include forgetting the names of close family members or friends, getting lost in a familiar neighborhood, and using unusual words to refer to objects, according to the CDC.

Approximately 5.8 million people in the United States have Alzheimer’s disease or another type of dementia, and about 200,000 of those diagnosed are under age 65, which is known as younger-onset dementia or Alzheimer’s, per the CDC.

A Diagnosis of Early Onset Dementia Can Be Especially Difficult

“I think there is often a misunderstanding in our culture that dementia is a normal part of aging, when in fact it is a devastating diagnosis — an incurable, progressive disease that will cause a person to lose many aspects of their personhood, face undignified situations, and ultimately lead to death,” says Hugenschmidt.

Much of the grief and loss experienced by the person with dementia and the people caring for them is unacknowledged by our society, and a diagnosis can leave people feeling very overwhelmed and alone, she says.

Early-onset forms of dementia are especially devastating, in part because they often progress more quickly than later-onset forms, says Hugenschmidt. Because early-onset dementia is diagnosed in people who are in their late fifties or early sixties, those people are usually still working and may even have children at home, she says.

“They are too young to qualify for Medicare, and many services designed for people with dementia aren’t a good fit for them and their families because they are 20 years younger than most people being treated for dementia,” she says.

Suicide Risk in Younger People Diagnosed With Dementia Often Overlooked, Say Authors

Although previous research has found that a dementia diagnosis increases suicide risk, the risk in people who have been diagnosed with early-onset dementia has been overlooked, Dr. Alothman and colleagues noted — a factor that may become increasingly important as Alzheimer's and dementia diagnoses are made at earlier and earlier stages.

Nearly one in two older adults now die with a diagnosis of dementia listed on their medical record, a 36 percent rise from two decades ago, according to a study published April 1, 2022, in?JAMA Health Forum. The authors attributed much of the increase to changes in medical records and greater public awareness of dementia rather than an actual rise in its prevalence.

Even with this increased awareness, many experts believe dementia still goes undetected much of the time. A study published June 29, 2021, in the?Journal of Alzheimer’s Disorders found that the majority of people with dementia hadn’t received a formal diagnosis, and Black Americans with dementia are more likely to go undiagnosed or receive a later diagnosis than white Americans.

Findings Highlight Need for Suicide Risk Assessment in People Diagnosed With Dementia

To examine how a dementia diagnosis impacted suicide risk, investigators evaluated medical databases and death records in England from 2001 through 2019. Using files from the Office for National Statistics in England, they matched up to 40 control participants with each suicide case. The findings were adjusted for sex and age at suicide or index date (date of inclusion in the study).

A total of 594,674 people were included in the final analysis: 580,159 controls (people who did not die by suicide) with a median age at death of 81.6 years old, and 14,515 people who died by suicide, whose median age at death was 47.4 years old.

There were 4,940 people who received a diagnosis of dementia, and 95 (1.9 percent) of those diagnosed died by suicide. Men were more likely to commit suicide than women — 61 percent versus 39 percent. The median age at dementia diagnosis was 75.1 years old and the median age at death was 79.5 years old.

Researchers did not find an overall significant association between a dementia diagnosis and suicide risk, but they did find a significant increase in suicide risk in people who were diagnosed with dementia before the age of 65, those who’d had a diagnosis of dementia within the last three months, and in people with dementia and a psychiatric comorbidity, such as depression.

Depression and Anxiety Can Be Part of Disease Process in Some Types of Dementia

“Many people don’t know that changes in mood like increases in apathy (basically a loss of ‘get-up-and-go’), depression, and anxiety are part of the disease process for many forms of dementia, which may contribute to the increased risk of suicide,” says Hugenschmidt.

"Given the high risk of both suicide attempt and suicide death associated with a recent dementia diagnosis, we suggest that the current efforts for prompt dementia diagnosis should be accompanied by suicide risk assessment measures focused on the period immediately after diagnosis and in those with young-onset dementia," the researchers wrote.

Previous studies have shown that suicide risk is higher in the months immediately following a dementia diagnosis; a U.S. study of Medicare patients published in?May 2021 in the Alzheimer’s Association journal Alzheimer’s & Dementia found that death by suicide increased after Alzheimer's or dementia diagnoses, with the highest risk among people 65 to 74 years old and in the first 90 days after diagnosis.

Fear of Loss Often Leaves People Reluctant to Discuss Dementia Diagnosis

These findings highlight the importance of improving access to dementia diagnosis, said the senior author,?Charles Marshall, PhD, a clinical senior lecturer in dementia at the Wolfson Institute of Population Health at the University of London, in a press release.

“A dementia diagnosis can be devastating, and our work shows that we also need to ensure that services have the resources to provide appropriate support after a diagnosis is given,” said Dr. Marshall.

Hugenschmidt and her colleagues help people focus on what they?can do and the importance of getting a good diagnosis as soon as possible. “People often don’t want to talk about their diagnosis — their fears of what will happen and the grief of what they stand to lose feel too overwhelming to speak about,” she says.

But talking about the disease allows for communication about care priorities, and provides the opportunity to plan for caregiving, housing, and income changes, and enroll in clinical trials of new treatments, says Hugenschmidt. “Also, while no forms of dementia are curable right now, there are medications and lifestyle choices that can help reduce symptoms and extend people’s time to live their lives,” she says.

Counseling and Support for People With Dementia Can Help With Depression and Anxiety

“This article also raises an important advocacy issue, which is that supportive counseling is not reliably paid for in our healthcare system; even when services provided can be billed for, they are reimbursed at extremely low rates,” says Hugenschmidt.

There is over 20 years of evidence that dementia care support can reduce depression in caregivers and behavioral symptoms of dementia like depression and anxiety in the person with dementia, yet these services are not reliably reimbursed, especially for early onset disease, she says.

“Through the advocacy of organizations like the Alzheimer’s Association, congress may act to increase Medicare coverage of these services — it’s important for people to let their elected representatives know about the importance of this kind of support,” says Hugenschmidt.

How to Support a Loved One Who Has Received a Diagnosis of Dementia

Most people with dementia are aware of what the diagnosis means when they get it; they still have insight, says Hugenschmidt. She offers the following advice for people who want to support a loved one who has received a dementia diagnosis.

Remember the humanity and dignity of the person. “One thing I hear very often from people with dementia is that people talk to them differently as soon as they get a diagnosis, even though at that point they are likely still driving and mainly caring for themselves. They will say things to me like, ‘I know that I can’t remember things as well, but he talks to me like I’m a child now,’” she says.

Lean into your friendship. “People with dementia and their care partners also often tell me that friends and family pull away from them after the diagnosis. I think because of the stigma of the disease, people often don’t know what to say or how to interact,” she says.

Instead of pulling away, lean into your friendship, says Hugenschmidt. “Go to coffee or out to lunch or dinner with the person. Listen to them. Understand that they have a disease that may change the way they communicate, but they are fundamentally still the person you have known and loved,” she says.

Initiate contact. It’s important to understand that often one of the first things to change for people with dementia is their ability to initiate, she notes. “This means you might have to be the one to pick up the phone every time to call them, or you might always be the one inviting them out. This isn’t personal — it’s part of the disease, and your persistence as a friend in reaching out to them when they can’t is incredibly important,” says Hugenschmidt.

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