For more than 40 years, we haven’t had a lot of good news when it comes to Alzheimer's disease.
In 2020, 49,000 Nevada residents had the disease and that’s supposed to increase to 64,000 in 2025. In the United States, 6 million people are stricken with it. And though it hits mostly people over 65, it can develop in people in their 50s, 40s and even 30s.
The cost of the disease is staggering. In Nevada alone, the estimated value of unpaid care— that is, feeding, clothing and bathing Alzheimer’s patients — is $2.6 billion. And that says nothing about the mental toll it takes on those caregivers and their loved ones.
So, whenever there’s some potential good news about Alzheimer's, we need to hear it.
Nevada is also a hotbed for Alzheimer’s research, with the Cleveland Clinic's Lou Ruvo Center for Brain Health embarking on a study that might change the future of Alzheimer’s treatments forever.
CLINICAL TRIALS
Dr. Charles Bernick, a neurologist and researcher at the Lou Ruvo Center for Brain Health, is the lead investigator of the AHEAD study. AHEAD focuses on the recently FDA approved drug to treat Alzheimer's, Lecanemab. Lecanemab, along with two other similar drugs, aim to delay Alzheimer's disease.
"Individuals who have no symptoms, who are functioning normally, but have amyloid beginning to accumulate in their brain, these are the candidates to participate in this type of project," said Bernick.
Amyloid is a protein that the body produces, and it can eventually form plaques in the brain, which then triggers another set of circumstances that lead to Alzheimer's disease. It's all fairly complicated, and even among the scientific community there is debate as to how Alzheimer's arises. But, at the very least, researchers agree that amyloid plaques are part of the problem.
"The hypothesis that's being tested is if we can remove the amyloid plaques early before people have symptoms with a drug like Lecanemab, we can at least delay a person from getting to the point where they're more symptomatic, where they cannot function independently," said Bernick. If this hypothesis proves to be true, then it's going to change the whole paradigm of how we think about Alzheimer's disease. Then we will be looking at people who may have a higher risk of the disease due to genetics and family history. This study is a five year study. We won't have the results of it probably for another seven years. But if it proves to be effective, I think it's going to make a big difference in a lot of people's lives."
Right now, big risk factors for the disease besides genetics and family history are diabetes, heart disease, and even depression.
WHAT ARE SOME BLIND SPOTS IN ALZHEIMER'S RESEARCH?
Alzheimer's research has been making a lot of headway for more than 40 years, but like with many other things, the impact of it on the LGBTQIA+ Community has not been researched that much. Associate Professor at the University of Nevada, Las Vegas' School of Public Health, Jason Flatt, aims to change that.
Flatt recently received a 3.5 million dollar grant from the National Institute of Health to greater study the impact of Alzheimer's in the LGBTQIA+ caregiving sector, as well as on members who have the disease. Flatt has been active in research for nearly 8 years and after a handful of small grants, this is the biggest one yet. Flatt intends to have two advisory boards to supervise the research, along with hiring LGBTQIA+ caregivers of those with Alzheimer's and Dementia to get first hand accounts of their challenges and experiences.
Part of Flatt's goal is to transform the traditional way people think of caregiving, as there are federal and local programs that aid caregivers, but can often exclude LGBTQIA+ members because of the requirements to apply.
"Services and support is often designed for biological family or married couples, but it doesn't really think about our LGBTQ plus community," said Flatt. "You might be caring for a friend, there might be a group of you helping someone who lives alone. We see nearly a third of LGBTQ plus older people live alone and over half of caregivers do not live with their care recipient for the LGBTQ plus community; so this affects their access to services."
Not only has the LGBTQIA+ Alzheimer's and dementia community been under-researched, but they can potentially be disproportionately affected by the diseases too.
"A lot of studies have not asked about sexual orientation and gender identity," said Flatt. "We're having to rely on population level data. One of the data sets comes from the CDC and the Alzheimer's Association's Healthy Brain Initiative. They added questions to ask people about how their memory is doing, and if it's getting worse over the past year. What we're finding is for states that asked about sexual orientation and gender identity, more LGBTQ plus people are endorsing these concerns. Nearly one in seven compared to a little over one in ten for non LGBTQIA plus people."
Like a domino effect, when you take into account the risk factors for Alzheimer's, the LGBTQIA+ community can be impacted even further than their cisgender counterparts.
"Being told that you're not accepted in society, we see higher rates of depression," said Flatt. "They may also be more likely to be a victim of crime, trauma or other forms of discrimination. Those are risk factors for dementia, and we're seeing higher rates of diagnosis of dementia. I think trauma could be part of the pathway that explains this. We have a study that looked at PTSD as a risk factor for people in Northern California, and we found that civilians with PTSD have a two fold increase in risk."
More information:
AHEAD Study From the Cleveland Clinic Lou Ruvo Center for Brain Health:
Cleveland Clinic Health Brains
Resources to get involved in LGBTQIA+ Alzheimer's research:
RISE (Research Inclusion Supports Equity)
The RISE registry is a national effort designed to connect participants to LGBTQIA+ friendly resources and opportunities in research. The focus of RISE is to ensure representation of LGBTQ members with Alzheimer’s or memory loss and their caregivers in clinical research. Without participation of LGBTQIA+, research trials and findings will lack the necessary diversity to address all community’s needs. Signing up for the registry allows researchers to reach out to LGBTQIA+ members to participate in clinical trials or research studies focused on Alzheimer’s.
You can go to www.theriseregistry.org to learn more. You can also learn more about Dr. Jason Flatt’s research at www.RainbowsofAging.org.
Guests: Dr. Charles Bernick, neurologist and researcher at the Lou Ruvo Center for Brain Health; Jason Flatt, associate professor, UNLV School of Public Health
