New tools shift brain care into realm of preventive health

When Vikram Bhaskaran discovered his father, Arun, had amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, he set out to learn everything he could about the neurodegenerative disease that rapidly causes nerve and muscle function to deteriorate.

Arun was in India at the time, and an appointment with a neurologist was hard to come by. When doctor appointments did happen, they were too short to answer all of Bhaskaran’s questions. So he spent hours searching for information on Google. With the deluge of data, he wasn’t sure what sources to believe. He thought there had to be a better way for patients and caregivers to get reliable information they could trust.

“Most people living with these types of hard conditions really have nowhere to turn to get answers to their common questions,” says Bhaskaran, who was leading creator partnerships at Pinterest at the time. “I felt deeply motived to solve this problem through the lens of a caregiver.”

So, along with a neurosurgeon, Bhaskaran co-founded Roon, a free digital health platform designed to function as an alternative to “Dr. Google.” Through short Q&A videos created by vetted doctors and other health care providers, patients and caregivers get instant, credible answers to commonly asked questions for conditions including ALS and dementia, plus other conditions like brain cancer and infertility.

Through Roon, caregivers learn how to respond to a loved one with dementia who’s yelling at them, or how to correct someone with dementia without insulting them. People ask their own questions, too, and they get instant text answers generated by AI trained only on Roon content.

“It’s like you’re getting your own multidisciplinary team of people who have lived in the trenches and studied the condition giving you answers,” Bhaskaran says. Users rate content, and low ratings trigger a content update. Roon will scale to over 22 conditions in the next 18 months, including Parkinson’s and multiple sclerosis. Bhaskaran hopes that ultimately insurance companies will offer Roon as a benefit.

At a time when neurodegenerative diseases are on the rise, Roon is part of a new wave of data-driven efforts to provide better care for people with conditions like dementia and Parkinson’s and to reduce risk in the first place. Many have been spearheaded by family members of people with the conditions. The majority of Americans currently have one of the top five risk factors for neurodegenerative disease, including hypertension, diabetes or obesity. And by 2050, some 13 million Americans could have dementia.

“We’re acknowledging there’s a pandemic, and acknowledging is a first step in being able to engage differently,” says Joanne Pike, president and CEO of the Alzheimer’s Association. Part of what’s needed is a shift in thinking — people need to pay as much attention to brain health as they age as they do to caring for the rest of the body.

Indeed, updated research from the Lancet shows that 45% of dementia cases could possibly be delayed or reduced by addressing 14 risk factors, including high LDL cholesterol, depression and physical inactivity. Tackling most risk factors in mid-life, from ages 18 to 65, was shown to have the biggest impact in delaying or preventing dementia, according to the study.

Understanding the importance of addressing risk factors, Jonathan Rosand, founder of the Global Brain Care Coalition and co-founder of the McCance Center for Brain Health, set out to make a simple tool to support brain health after decades of caring for patients with brain bleeds and spinal cord injuries.

A typical refrain from caregivers Rosand interacted with was: how can I take care of my brain so I don’t end up like my mother, brother or sister with dementia? With colleagues at Mass General Brigham, Rosand created the McCance Brain Care Score, an assessment that measures efforts to protect brain health and gives guidance on improving it.

“This tool helps people feel empowered, that you can protect yourself by using it over the course of your lifetime,” he says.

The Brain Care Score measures how people rate on risk factors like smoking, sleep, amount of exercise and body mass index, with higher scores indicating better ratings. People can take the 5-minute assessment online, then bring results to their doctor for discussion.

“Prevention gives individuals agency over their own care,” Rosand says. “Don’t worry about being perfect,” he adds. “Just decide to make one change on the basis of your score, and know that each lever influences every other lever. They’re all related.”

A recent study in the Frontiers in Psychiatry showed that every five-point increase in the brain care score was linked to a 33% lower risk of depression later in life, as well as a 27% lower composite risk of dementia, depression and stroke. Meanwhile, a separate journal of Neurology study connected a higher brain care score to a decreased risk of brain disease like dementia, including for people with a higher genetic risk.

Ultimately, Rosand hopes the tool will shift brain care into the realm of preventative health if more primary care doctors choose to embrace it as part of patients' regular check-ups. It’s been encouraging to see plenty of patients already benefitting from the tool, he says.

One patient who didn’t like exercise picked another factor to work on and made progress. “They had that experience of success,” Rosand says, “and then they came back and they said, ‘I’m ready to love exercise.’ What we’re learning is, it’s never too late. Even people with a higher score can reverse their risk. It’s really exciting.”

Rosand is also working on is finding ways to get a more accurate count of dementia, depression and stroke cases. There’s no streamlined data source to pinpoint how many people in the U.S. currently have the disease. “How can you manage it if you can’t even count cases accurately?” Rosand says.

Using new technologies to help monitor and detect could be one solution, Rosand says. For example, platforms like Carefull, designed to help banks protect older customers from fraud, could possibly play a part in helping to identify customers who suddenly stop paying bills on time or excessively change their password, he says, which can be a sign of memory deterioration.

One initiative harnessing new technologies to help with neurodegenerative disease is the 10,000 Brains Project, spearheaded by Everett Cook, whose late wife had dementia. The nonprofit supports research on Alzheimer’s, Parkinson’s, and other neurodegenerative diseases and ethically uses artificial intelligence.

An initial project, says Cook, is creating a large digital bank of brain tissue for Alzheimer’s and other conditions that scientists can access for their research. The nonprofit also plans to launch a venture philanthropy fund to support its work. Cook hopes the work will help other families avoid his late wife’s long road to diagnosis.

“There are so many ways to scale up monitoring that are much more passive than a blood test,” Rosand says. “We need to be looking carefully at those opportunities.”

In the meantime, tools like the Brain Care Score and Roon can help. Pike says it’s critical to work on your own risk factors while also caring for your loved ones. “If you see any changes within their cognition, talk to them or to a provider,” she says. “That gets us a long way.”