She was only 55 years old when she was officially diagnosed with early onset Alzheimer’s Disease, an uncommon form of dementia that strikes people younger than 65 years old. Irene died seven years later, in 2014.
Now her family is hoping to make a difference in the fight against the disease through the Irene Y. Rianna Memorial Foundation, a charity they created last year. The Riannas say they established it to not only keep Irene’s memory alive but also to raise money for a scholarship fund at Smithfield High School and to help other families pay for home health care.
“We would like to help them bring in – even if it’s just for a weekend – some relief so that they can get away and pay that caregiver to take care of their loved one in Irene’s name – all of this in Irene’s name,” Ken Rianna, Irene’s husband, told Eyewitness News.
More than 5 million Americans are living with Alzheimer’s, including 23,000 people in Rhode Island. Experts say that number will jump 40% by 2025, to more than 7 million nationwide. The cost of caring for patients with the disease currently stands at $236 billion.
The disease also takes an emotional toll on families.
“To be honest, I miss her like crazy I really do,” Ken, who also lost his mother to Alzheimer’s, said. “The most difficult part about that was when she would look at me with those eyes and ask me, ‘What’s wrong with me, what’s wrong with me? I know there’s something wrong with me. Ken, help me,’ and I couldn’t help her.”
Ken and Irene’s three children said they sometimes felt guilty and helpless.
“When I look back the worst is probably the guilt, because you know it’s your mom and you know that she’s ill but she’s your mom and she’s supposed to know how to do everyday things. So I would get frustrated and I look back and feel bad at the times I did get frustrated because it wasn’t her fault. It was the disease,” Kerri Rianna said.
“As far as watching dad go through this it tore us to pieces. We were losing our mother and watching our father crumble at the same time,” Kerri said.
Julie Rianna Romano, the family’s younger daughter, said “it was really hard to watch Dad not be able to fix this because dads fix things all the time and our dad always did, and he didn’t have control of the situation. We lost a piece of my dad when we lost my mom.”
Although the fight against Alzheimer’s can feel like a losing battle for some families, researchers like Dr. Stephen Salloway at Butler Hospital say it is important to continue to make vital gains.
“Alzheimer’s is a probably one of our biggest public health problems and as the population ages, we need to find ways to lower the risk and slow the progression of the disease because it’s going to affect more people,” Dr. Salloway said.
Researchers have been working to find a cure for years with no luck so far, but Dr. Salloway said the world has now entered the era of Alzheimer’s prevention.
“We’re doing a number of studies that people may be eligible for,” he said. “They’re primarily in the age range of 60-85 and people who have to have normal memory. They can have concerns about their memory, but they test normally and then we determine either through a genetic test or a PET scan – an amyloid PET scan – to see if they’re at risk for developing Alzheimer’s down the road.”
Dr. Salloway said Butler Hospital is part of a global confirmatory trial. He’s hoping people with mild memory loss and early onset Alzheimer’s may be eligible for this study. “We need the volunteers. We need the citizen army to step up to win the war against Alzheimer’s.”
He also says future treatment will continue to improve because doctors are going to be able to intervene sooner to help lower the risk, “I think Alzheimer’s will be much more manageable over time and I’m hoping that we’ll have our first breakthrough. I’m hoping that this result that we reported two weeks ago will be the first the stage of a breakthrough for Alzheimer’s.”
For the Rianna family, the goal is to continue giving back to the community.
“I’m looking forward to the day where I see her again and my faith tells me I will,” Ken said.