Retired Supreme Court Justice Sandra Day O’Connor recently revealed that she has been diagnosed with the beginning stages of dementia, probably Alzheimer’s disease. O’Connor’s husband also lived his final years with the disease. The Alzheimer’s Association of Illinois Chapter serves more than 220,000 Illinois residents living with the disease as well as their families and caregivers.
On this week's Friday Forum, a conversation with Susan Sklar, the manager of education and outreach with the Rockford chapter of the group.
Sklar says there is no cure and there is nothing to slow down the progress of the disease.
"There are some medications available that used to say that it does slow down the progression," Sklar said. "That was about 10 years ago. And those now are found that it does not slow it down. It might make the symptoms a little bit more bearable, like the aggression, the anxiety, things like that."
And every person's experience is unique. Sklar lost her mother and my grandmother to Alzheimer’s. She says that’s why she is so passionate about doing it.
"It always starts in the same area which is around the hippocampus, which is another word for your short term memory bank," Sklar explained. "So that is why the short term memory goes first and the long term memory stay pretty much until the end. But it does move around differently in everybody. If you’ve seen one person with Alzheimer’s, you’ve only seen one because they’re all so different."
Sklar says research indicates there are some lifestyle choices which could help in the prevention of the disease.
"In July, in our international conference, it came out that if you can keep your blood pressure at 120 that would be way beneficial to Alzheimer’s disease."
The number one risk factor is age. Sklar says about half of people over age 85 will get Alzheimer’s. Family history is another factor.
Women and minorities are also diagnosed more often. There is some emerging research indicating the role of estrogen in Alzheimer's. African Americans get Alzheimer’s twice as likely as Caucasians and Latinos get it one and a half times as likely.
"So we have a demographic there that really needs some education and some help," Sklar said.
The Alzheimer's Associaion offers a care navigator who is a licensed social worker. Sklar says there is also a 24-hour helpline for questions about medications, home health, and behaviors. She says support groups are also available for those with the disease and their caregivers. Sklar travels to eight counties to put on education seminars on the topic.
"One out of three caregivers die first because it’s so stressful," Sklar said. "It’s the hardest thing you’ll ever do [to] take care of someone with Alzheimer’s."
She says there are some promising drugs on the horizon.
One of the areas which scares Sklar the most is the financial burden.
"I know I was so scared that my mother would outlive the money because then what happens? Many, many people are going on Medicaid that never thought they’d ever be on Medicaid," Sklar said.
Sklar says monthly estimates for care can be $6,000 a month. And the average stay is 5 years.
"So you can do the math and it’s just a ton of money," Sklar said. "And it is a financial hardship, because if you don’t have the money, then where do you go? And there’s very few Medicaid beds that are available."
Sklar emphasizes that caregivers need to receive support too.
"I always say to the caregiver, 'You are number one,'" Sklar said. "You have to take care of yourself first, you have to get that respite care, you have to get away. Don’t think that nobody can do it but you. There are people available that can step in. They may not love them as much as you do, but they can care for them as well as you can."
Sklar says breaking the stigma around the disease is also an important part of addressing the disease.
"We also praise Sandra Day O’Connor for coming forward and trying to break that stigma," Sklar said. "People don’t want to talk about it. Most people won’t even say the 'A' word. And it just brings such awareness to the disease--that everybody knows somebody that has it."