Thoughts of suicide are often a first reaction to a diagnosis of dementia before age 65, a new study suggests.
Suicide risk is highest in the first three months after the dementia diagnosis and if the patient already has a psychiatric disorder, British researchers found. For those younger than 65, suicide risk was nearly seven times higher than in patients without dementia.
Overall, however, when patients of all ages were assessed, there was no statistically significant increase for suicide, concluded the research team led by Danah Alothman, of the University of Nottingham in England.
"I regularly encounter the effects of the diagnosis of dementia as well as the consequences that this disease has on patients and their loved ones," said Dr. Marzena Gieniusz, medical director of the Alzheimer's and Dementia Care Program at Northwell Health in New Hyde Park, N.Y.
This diagnosis and its implications are serious and can overwhelm patients and those who care for them, she said. "Many cannot bear the thought of losing their independence and express that life is no longer worth living," said Gieniusz, who had no part in the study.
"We can all appreciate the gravity of this diagnosis, which is why it should never be given lightly and [should be] presented in a thoughtful manner with an opportunity for discussion, counseling, and provision of support and a plan," she explained.
Numbers are hard to come by, but people with early-onset dementia may be in their 40s and 50s, according to the Alzheimer's Association. They likely have families, careers or are even caregivers themselves.
Looking at nearly 595,000 people in the United Kingdom from 2001 to 2019, the researchers found that 14,500 died by suicide. Among those who took their lives, about 2% had been diagnosed with dementia.
Compared to a "control group," risk of suicide was three times higher for those diagnosed with dementia before 65, and more than two times higher in the first three months after diagnosis, the investigators found. It was almost doubled in those with a mental health condition. For signs of suicide risk, click here.
Although there is still no cure for dementia, there are ways to make things better, Gieniusz said.
"It's important to help patients and their loved ones understand that it's not hopeless, and there are always things we can do to help manage the disease, despite being unable to stop its progression or reverse the disease process," she added.
Gieniusz believes that working as a team, care providers, family and other resources can go a long way to helping dementia patients cope. "One cannot underestimate the difference that education, access to resources, and the feeling of being supported and always having someone to turn to in a challenging time has on the outlook and course of the disease and lives involved," she said.
It's also important to discuss and address safety issues, including gun safety, driving, and managing depression, anxiety and psychosis, which are common in patients with dementia. This can help to decrease the risk of suicide, Gieniusz said.
"My best advice is to get connected, ideally with a dementia care program if one is available locally, or seek out other community or national organizations who can help get you connected to resources and support that can help," she said. "Anything can be overwhelming or scary when you feel like you'll be facing the challenge alone, but it doesn't have to feel this way if you have the right people supporting you and tackling the challenge as a team."
Timothy Schmutte, an assistant professor of psychiatry at the Yale University School of Medicine in New Haven, Conn., has studied both dementia and suicide prevention.
"Once you're diagnosed with dementia, it's like a slow-moving train wreck. You know that there are no disease-modifying treatments. You know it's not going to get better, it's only going to get worse, and you don't want to be a burden on the family," he said.
A feeling of hopelessness and fear of losing control sets in, and the thought of suicide can occur, said Schmutte, who had no role in this study. With an aging population, as more people are diagnosed with dementia, the problem is only going to get worse, he said.
When treating dementia patients, Schmutte has taken inspiration from the hospice movement. "The philosophy of hospice is to have a good life until you die — helping patients find things that they can do that still bring them meaning, that still give them joy," he said.
Dementia can take years before it becomes debilitating, so during that time, live the best life you can and do things that make you happy, he said.
Schmutte also advised remaining socially active — "engaged with the world, with other people and in activities."
The report was published online Oct. 3 in JAMA Neurology.
For more on dementia, head to the U.S. National Institute on Aging.
SOURCES: Marzena Gieniusz, MD, medical program director, Alzheimer's and Dementia Care Program, Northwell Health, New Hyde Park, N.Y.; Timothy Schmutte, PsyD, assistant professor, psychiatry, Yale University School of Medicine, New Haven, Conn.; JAMA Neurology, Oct. 3, 2022, online