Alzheimer’s a ‘tsunami’ heading for U.S. population

Thu, 10/18/2018 - 8:15pm
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According to statistics, Alzheimer’s disease will be the number one killer in America by the year 2050. Today, it is the fifth highest cause of death in Rhode Island.

“This should not be upsetting, it’s just that we are in a tsunami. We need an army to make this disease go away so that we can age gracefully,” said Donna McGowan, executive director of the Rhode Island chapter of the national Alzheimer’s Association.

But the audience McGowan was speaking to at the Community Center on Monday, Oct. 15, about 30 Block Island residents representing a wide range of ages, did find the information unsettling. Later in the presentation, when Program Manager Margaret Murphy listed some of the symptoms of the onset of Alzheimer’s, one member of the group said, “It’s scary.”

While McGowan said the “older one gets, the greater the risk,” she said one member of the Rhode Island chapter’s support group was 52 years old. Given that those diagnosed with the disease can live anywhere from months to decades, McGowan said that at $268 billion a year, “it is the most expensive disease to manage.”

One resident said he knew of a gentleman who, after his wife died of the disease, had medical bills totalling $1 million.

“Whether your healthy or not, you need to get your affairs in order,” said Murphy. “It’s important for every one of us to prepare for our future.”

As America’s population ages, McGowan said, “the country can’t afford this disease. It will bankrupt the U.S. government.”

Currently, there are 23,000 residents in Rhode Island diagnosed with dementia; 1,200 of those are under the age of 65. One of the issues with these numbers is the elusiveness of diagnosing the disease.

One member of the Block Island audience asked, “What’s the difference between dementia and the aging process,” and Murphy, the program director, said it was indeed hard to tell.

To that end, the Alzheimer’s Association is not just an outreach and educational organization, it is also the largest fundraiser for Alzheimer’s research in the world, said McGowan. There are, she said, only a handful of medications that have been approved by the Food and Drug Administration, but there is still no cure. McGowan said that many clinical trials for possible drugs are stopped due to lack of participants, and so she urged the Block Island group to participate if they could.

That’s why both McGowan and Murphy recommended to the group to pay attention to possible symptoms, because the earlier the disease is diagnosed, the easier it is to create a long-term care plan. They both mentioned that in 40 percent of all cases, the caregiver — usually a family member — dies before the patient due to stress and anxiety.

Finding the proper care is also an issue. Murphy said that she went through 15 Certified Nursing Assistants before she found the right one, but one member of the audience startled the Alzheimer’s Association representatives when he said, “That is a profession that does not exist on this island.”

“That’s good to know,” said McGowan.

Senior Advisory Committee Senior Coordinator Gloria Redlich pointed out that there was a community services coordinator on the island, Maryann Seebeck, RN, who is an on-island resource.

Redlich said that “Seebeck is proposing that we have a certified agency here on the island. That’s one of the things we’re going to go to the town with.”

One woman in the group said she is currently caring for her mother, who has been diagnosed with dementia, and asked what role nutrition plays in care or prevention.

“I am a carbon copy of my mother,” she said, while noting that she did not have any children to care for her if she became ill. “I cannot get this disease,” she said. “No way.”

McGowan and Murphy said that nutrition plays a role, saying that heart healthy diets — such as the Mediterranean Diet — have proved to have some impact, while also keeping one’s blood pressure as low as possible can also help.

The two representatives from the Alzheimer’s Association urged the Block Island community to form a support network.

“They are absolutely crucial,” said Murphy, while McGowan added that “stories are very powerful. We all have stories. They’re healing.”

“There are pockets in the state — including Block Island — where services are just not available. There are gaps in services all over the state,” said Murphy.

Given that, they urged everyone to reach out to Lt. Gov. Dan McKee to educate him on what kind of resources Block Island might need to join the fight against this disease.

“Tell him your concerns,” said McGowan.

Another member of the group brought up the topic of creating a group home on the island, and while Redlich said that topic had been discussed by the members of the Senior Advisory Committee, it had gotten no further than that.

“That’s another good topic to bring up to the lieutenant governor,” said McGowan.

Anyone needing more information about the Alzheimer’s Association can contact McGowan at dmcgowan@alz.org; Margaret Murphy can be reached at mmurphy@alz.org. The Rhode Island chapter website is alz.org/ri. The toll free number is (800) 272-3900. Lt. Gov. Dan McKee’s office number is (401) 222-2371.