Turning heartbreak into hope: Family devastated by Alzheimer’s not giving up

Special Reports

PROVIDENCE, R.I. (WPRI) — It’s described as the long goodbye: Alzheimer’s. 

The memory-robbing disease is the sixth leading cause of death in the U.S. and there is no cure. It affects not only the elderly but baby boomers too.

Diane Fitzgerald and her family know the devastating effects all too well. Her mom, two sisters, and brother were all diagnosed with early-onset Alzheimer’s. All have since passed except her 54-year-old sister Janice, who’s being cared for in a nursing facility.

Diane says Janice has forgotten her family.

“I showed my sister a picture the other day of her and a couple of us,” she recalled. “I said, ‘who’s that?’ and she names a completely different sister. It’s heartbreaking.”

It’s also stressful for loved ones. The Alzheimer’s Association says 16 million Americans provide unpaid care, making it a caregiver’s disease.

“You go from your parents taking care of you and now you’re taking care of them like they’re your children,” Diane said. “You’re taking them to the bathroom, you’re helping to bath them, cutting their nails. They would be mortified if they knew what you were doing for them, but you do it because you love them.”

According to the Alzheimer’s Association, 5.8 million Americans of all ages are living with the disease including about 23,000 in Rhode Island. One out of every 10 people aged 65 and older are affected, with nearly two-thirds being women.

Diane says family members living with Alzheimer’s still know us and still want us to be with them. They’re still here.

Diane’s nephew, Steve Blais, lost his mom to Alzheimer’s.

“I regret all the time not getting to listen to all her stories from her childhood and committing all to memory so I could tell my kids down the road about how great their grandmother was,” he said.

Steve often dreams and wonders about what could have been.

“I wish I’d been able to have a first dance with her or have her hold her first grandchild,” he added. “Knowing that’s an impossibility makes me cry even now.”

Butler Hospital’s Dr. Stephen Salloway—recognized as a leading expert on aging, Alzheimer’s and other memory disorders—says families are mourning the death of a loved one long before they die.

“There’s a lot of grieving in Alzheimer’s because the person loses their ability but they’re still around,” Salloway explained. “The family has to adjust to almost a different type of relationship they’ve had and it affects everyone in the family.”

That’s why thousands are walking to end Alzheimer’s because no family on this journey wants it to happen to anyone else.

“Twenty years ago, having my kids, I didn’t want to talk about it. I never once thought I had to worry about my kids,” Diane said. “This could happen to me…this could happen to my kids.”

A number of clinical and observational studies are being conducted in Rhode Island to find prevention and a cure.

The Search for a Cure

While there is currently no answer for Alzheimer’s, a leading expert says we’re getting closer to finding one.

Dr. Stephen Salloway believes a cure or prevention will happen sooner rather than later. Researchers are looking to sign up 2,020 people by the year 2020 for a groundbreaking study to finally put an end to this horrific disease.

Both Diane and Steve are part of an observational study at Butler Hospital in Providence. Every two years, they get cognitive testing, blood drawn, MRIs and PET scans, hoping one day their data helps doctors find a cure.

Salloway says they’re his heroes.

“These are family members who are afflicted with the almost worst form of Alzheimer’s and making such a contribution,” he said. “We found out from those families, from Steve and Diane, that the plaques build up 15-20 years before memory loss.”

Alzheimer’s is our number-one public health problem, according to Salloway, but progress is being made in Rhode Island.

“We’re doing more than 20 studies here and some of them involve treatments with medication to try and remove proteins that build up in the brain that cause Alzheimer’s,” he explained. “A medical trial where we can actually remove the proteins that build up in Alzheimer’s or target genes—that’s a treatment. People come once a month getting an infusion of a vaccine that targets those proteins to try and lower them or remove them from the brain.”

Salloway says the Alzheimer’s Association is also sponsoring a major trial “that’s going to use active exercise, healthy diet, brain stimulation training, and good hearth health activity to try and prevent memory loss due to Alzheimer’s.”

While there’s already a cheek swab to find out about a person’s genetic risk for the disease, Salloway says researchers are hoping to have a blood test within the next two years to see who could be affected.

Web Extra: Dr. Salloway details importance of Alzheimer’s research

“We hope, at some point, to be able to correct mutation or prevent the abnormal gene from causing the damage in a very targeted way,” he said. “This is amazing science.”

When asked if we’ll ever see a cure, Salloway said, “your generation and next-generation will, absolutely, and sooner than that.”

“It’s going to come in a wave, not going to wipe off the map like the polio vaccine,” he continued. “Alzheimer’s will be much more treatable, preventable illness in the near future than it is today if people show up and make that happen.”

The 2019 Walk to End Alzheimer’s will be held Sunday, Oct. 6 at the Roger Williams Park Temple to Music. Registration begins at 8:30 a.m. and the opening ceremony will be held at 9:45 a.m. before the walk kicks off at 10 a.m.

Click here to register, donate or volunteer »

WPRI 12 and Fox Providence are proud sponsors of the Walk to End Alzheimer’s.

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