Jill McGillicuddy remembers when she began noticing changes in her husband Ed’s memory.
Ed, too, realized something was amiss. The signs were subtle but clear – he would often misplace his wallet, for example, or forget whether or not he had loaded a pod into their Keurig coffee maker when he went to retrieve the cream from the refrigerator.
“I knew there was something wrong,” he said.
Ed went to see a neurologist, and after testing, the couple’s fears were confirmed. He was diagnosed with early-onset dementia.
As the parents of two college-age children, the development has changed their lives significantly. But they are undeterred, and together, they have continued to live their lives and pursue their shared goals.
“We’re just kind of living life each day, and we hope that we continue to just stay steady as we are … We’re in it for the long haul,” Jill said.
After the diagnosis, Ed took another proactive step – seeking out clinical trials in which he might be eligible to participate. That led him to the Rhode Island Mood & Memory Research Institute.
Anne Cerullo, the institute’s senior clinical research coordinator, said that at first, Ed was considered a “borderline” case and did not immediately qualify for available studies. But through periodic check-ins and support from the institute’s staff, he was soon connected with a trial – one he remains a part of three years later.
“In his case, we kind of had to just hold onto him,” Cerullo said.
Today, the McGillicuddys are grateful for having made the connection with the study and the institute, and for the support they have found within Rhode Island’s Alzheimer’s and memory loss community.
“It has been a very positive experience … It has been a challenge for our family, but we have all the support,” Jill said.
‘Golden age’ of research
The McGillicuddys shared their story during “Alzheimer’s Disease: Finding Hope Through Research,” a panel discussion hosted Oct. 30 at the Cranston Enrichment Center. The event served as the culmination of a yearlong grant the center received through the Tufts Health Plan Foundation to pursue outreach and educational programming as part of Cranston’s dementia-friendly community initiative.
Jeffrey Barone, executive director of the Cranston Department of Senior Services, noted that the center has applied for a second year of funding through the grant and expects to hear back soon.
“Our goal was to educate people, make Cranston a dementia-friendly community, and it looks like we’re on our way to doing it,” he said.
Last week’s program, led by Cerullo and three other local experts, focused on a range of issues, from the latest developments in research to the opportunities available in terms of clinical trial and research participation.
On the whole, their message was one of optimism – as well as a call for continued action.
“This is the golden age,” said Terry Fogerty, community outreach coordinator at the Alzheimer’s Disease & Memory Disorders Center at Rhode Island Hospital. “There has never been this breadth and depth [of research], there’s never been this [level of] collaboration and sharing of information, and we invite you all to consider being what we call affectionately ‘citizen scientists’ and joining us in this fight to end this disease.”
While the progress made has been significant, the statistics surrounding Alzheimer’s and other dementias are sobering. Currently, more than 5 million Americans and nearly 50 million people worldwide are living with Alzheimer’s disease. In the U.S., the figure is expected to rise to 14 million by 2050. Locally, 14 percent of Cranston’s population is living with Alzheimer’s or a related dementia.
The panel’s moderator, Catherine Taylor – a former director of the state’s Division of Elderly Affairs and candidate for lieutenant governor, who now serves as the senior advisor for policy, partnerships and community engagement at the University of Rhode Island’s Geriatric Education Center and George and Anne Ryan Institute for Neuroscience – said Cranston particularly has been part of “exciting work” on memory loss issues through its dementia-friendly community initiative.
Taylor echoed Fogerty in noting that despite the daunting nature of Alzheimer’s and dementias, the current climate provides cause for optimism. She noted that circumstances have changed dramatically since she was involved in the development of the state’s first Alzheimer’s plan during her time at Elderly Affairs.
At that time, she said, “there was no cure in sight … Now, there is hope.”
Studies and trials
Panelists spoke at length about the value of clinical research opportunities for both patients and professionals.
Tara Tang, outreach coordinator for Butler Hospital’s Memory & Aging Program, said participation is a highly personal decision for individuals and families. Motivations for taking part in a study vary, she said – but regardless, she framed it as an “extremely altruistic” undertaking that will help pay dividends for future patients.
Tang said the staffers at Butler’s program and other facilities place an emphasis on providing comfort and guidance to study participants – a “hold-your-hand, in a good way, process.”
“We want to make sure that you’re comfortable through the entire process,” she said.
Fogerty noted that there are eligibility requirements for studies, and most are limited to people in the age range of 50 to 90. But she said other factors are considered.
“If you have a family history of Alzheimer’s disease, you’re definitely a priority,” she said. “We would like to see you and talk to you about participation.”
Fogerty said she and her colleagues are charged with matching prospective participants with the “best trial that will be of the most benefit to you.” She noted that participants can discontinue their involvement at any point, for any reason – “It is your decision the entire time” – and that research professionals are grateful for anyone who steps forward. Often, she said, study participants “become extended family” to those overseeing the work.
“We are so appreciative of everyone who even considers participation in clinical research … We are just grateful for any of the time that we get with you,” she said.
Cerullo said that even if a prospective participant does not qualify for one particular study, the close bonds among members of the state’s research community means other opportunities can be more easily identified than ever before.
“This is the collaboration that’s going on … This is what’s new about what’s happening now in Rhode Island,” she said. “Our goal is the same, and that’s to cure this disease once and for all.”
Diversity and treatment
The panelists agreed that a significant need exists in terms of fostering a more diverse community of research participants. Currently, most of those involved in trials and studies are white women – and that presents a challenge, given that Alzheimer’s and other dementias cut across demographic lines.
Tang said African Americans are twice as likely to develop Alzheimer’s as the overall population, and members of the Latinx community are 1½ times more likely to develop the disease.
“Most of the people who participate in clinical trials are of the same socioeconomic level, and they tend to be Caucasian,” she said. “So in order to find a cure for a disease that effects so many people regardless of where you come from, we need more people to represent the communities where they come from.”
She added: “We are now about to turn into a new decade. We’re in the 21st century. And so we need to come to the table together and have a frank discussion about what those challenges are and how we might be able to surmount them … If we find a breakthrough treatment for this disease and it’s for a certain group of people, then we have not succeeded.”
Fogerty echoed Tang’s sentiment – “We cannot develop a drug that works only for white, middle-class, educated women. We need a drug that works for every single person in this world,” she said – and noted that a more diverse pool of research participants is also essential given the nature of Alzheimer’s and other dementias.
“Not one of our bodies operates in the same way. We have a lot in common, but we have a lot of differences … So the more people we get involved in research, the better we can really look at precision medicine here so that we can find treatments that can work for everybody,” she said.
She added: “More and more … we’re starting to think, or we’re coming to realize, that treatment for Alzheimer’s disease is going to be a lot like treatment for cancer. We’re going to have to use cocktails, mixes of drugs, and probably other modifications to lifestyle to really treat this disease, and it’s going to be very individualized.”
The panelists noted that there are other ways to be involved beyond trials and studies. Butler and Rhode Island hospitals maintain registries for people who have shown signs or dementia or have a family history, through which periodic check-ins can help monitor their progression. The Mood & Memory Research Institute does not maintain a registry but provides six-month check-ins, which can help get prospective patients into the clinical study pipeline.
Staying on top of the progression of dementia is vital, the panelists said – and the benefits of making connections with professionals in the field early can pay significant dividends.
“We’ve learned the sooner you get treatment for this disease, the better your long-term prospects are in terms of managing this disease successfully,” Fogerty said.
She also noted that at present, the youngest known person to be diagnosed with Alzheimer’s disease is 29 years old. That, she said, illustrates the fact that it is “not strictly a disease of aging” – and that the factors that cause it can be present years before symptoms emerge.
“We have to think differently about this disease … We need to think of it as a lifespan disease,” she said.
Fogerty also noted that Butler and Rhode Island hospitals served as sites for an international study that collects “biospecimens” such as blood and saliva samples, as well as brain imaging, to provide data for researchers. She said the “historic” initiative has “provided so much information to researchers worldwide.”
“We’re looking at people’s brains as they age with this disease, and it is informing all kinds of research that is going on in the world,” she said.
Panelists additionally spoke at length regarding the lifestyle factors associated with prevention, and management, of dementias.
Tang mentioned the U.S. Study to Protect Brain Health Through Lifestyle Intervention – more commonly known as the U.S. POINTER study – as a national effort focused on the effects of a sedentary lifestyle and the effects of exercise and nutrition coaching on cognitive status over time.
Fogerty said overall physical health, and particularly heart health, is a key part of prevention.
“One of the things we know now is that heart healthy in brain healthy … We have to keep this engine healthy to keep this brain healthy, and we have to do everything that we can to maintain heart health and brain health,” she said.
Cerullo spoke of the need for people to remain socially active as they age – and of the value of remaining mentally and creatively engaged.
“Challenge yourself. Play an instrument. Learn a new language … The more you challenge your brain, the more you grease the wheels up there, the better it’s going to continue to work for you,” she said.
She added: “As we get older, we start to isolate. You’ve got to get out … That social interaction is really going to help as much as diet and exercise. We know that. And it just helps your overall sense of self and your well being, and you feel more alive.”
The hopeful tone at the heart of the panelists’ remarks came on the heels of significant news on the Alzheimer’s research front – one with direct ties to Rhode Island.
Biogen Inc., a biotechnology company, recently announced it will resume studies of a drug called aducanumab. A previous study of the drug – conducted partly in the Ocean State – was halted earlier this year, but the company says an analysis of additional data has shown the signs the drug is effective in treating the early stages of Alzheimer’s. Biogen now plans to seek FDA approval for aducanumab.
Fogerty said local researchers believe the drug has “great potential for being the next FDA-approved drug for the treatment of Alzheimer’s disease.”
Beyond the promise of aducanumab, Fogerty noted that researchers believe they are on the “cusp” of developing a blood test for Alzheimer’s – something she said would be a “game-changer in research.”
Beyond the various hopeful developments in terms of research, Taylor reminded those in attendance of a vital point – that Alzheimer’s disease and dementia are not inevitable parts of the aging process.
“Dementia and Alzheimer’s disease are not normal aging. They’re not,” she said. “It’s important to know that you can grow to a ripe old age and be cognitively completely normal. And that’s the way it should be.”