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Do you know someone touched by Alzheimer’s disease? A caregiver and patient share what it’s like

Norris Roberts,  Lonni Schicker and Stephanie Rohlfs-Young discussed Alzheimer's disease and caregiving on "St. Louis on the Air."
Kelly Moffitt | St. Louis Public Radio
Norris Roberts, Lonni Schicker and Stephanie Rohlfs-Young discussed Alzheimer's disease and caregiving on "St. Louis on the Air."

This segment originally aired on ​St. Louis on the Air on Sept. 8, 2016. It will be rebroadcast at 10 p.m. on Jan. 20, 2017.

Norris Roberts’ mother was diagnosed with Alzheimer’s disease nine years before she died. Over that time period, Roberts and his father tried to do everything right.

Every other week, they’d take her to the beauty shop she always went to so she could socialize. They bought her similar-styled clothes when the old ones no longer fit. They even kept up her tradition of Sunday night family dinners.

Over time, though, the Sunday dinners started to change. It’s a process that Roberts documented in a book titled “Mama is Still Here!”

“Unfortunately, fear gets in the way,” Norris told St. Louis on the Air host Don Marsh. “People don’t feel comfortable with [the sufferer’s] behavior. They are not themselves all the time. Our circle would get smaller and smaller because some family members chose not to participate. You are dealing with the loss of the sufferer and the memories you shared with them. In addition to that, you’re dealing with the decline in family and friends coming around when you’re used to seeing them.”

More than 5 million people in the United States are living with Alzheimer’s disease and one out of every nine people you meet over the age of 65 has Alzheimer’s. Each person and the people who care for them knows a certain kind of fear that comes with the disease: a fear of the unknown.

Alzheimer’s is the most feared disease by Americans over age 50. About 110,000 Missourians and 130,000 Illinoisans have it. 

Early diagnosis

Lonnie Schicker, a nurse and educator who was diagnosed two years ago with an early onset version of the disease, said she is motivated to speak publicly about the diagnosis because of the amount of fear out there about the disease.

"I want people to know. I want people to put a face on it, so people aren't so fearful. Fear overrides everything sometimes." — Lonnie Schicker, nurse and educator

“I want people to know,” Schicker said. “I want people to put a face on it, so people aren’t so fearful. Fear overrides everything sometimes. Fear for the caregivers but fear for people suffering with the disease: wondering what the future holds for you, how much longer can I do this, how much longer can I drive … there’s a lot of fear involved.”

Schicker said she feels optimistic about the future because she has a plan, one she coordinated with the help of her family and the Alzheimer’s Association in St. Louis.  She knows there are things she no longer can do, but there are many other things she can.

Caregiver care

Most people who have Alzheimer’s are cared for by family. Stephanie Rohlfs-Young, the vice president of programs with the St. Louis chapter of the Alzheimer’s Association, said that it normally takes three family caregivers to provide daily care and support of someone with Alzheimer’s.

Rohlfs-Young also explained that caregiver stress and burnout is incredibly high with Alzheimer’s disease because of how long it can take hold of someone’s life. That’s where organizations like Alzheimer’s Association come in to help.

The non-profit can help families find a diagnosis for a family member, host conversations and planning sessions with families and connect people with doctors, social workers and counselors who will help along the way.

“Don’t wait to get help,” Rohlfs-Young said, recommending people call 1-800-272-3900 for a consultation. “The situations don’t get better.”

For those unsure about an Alzheimer’s diagnosis, you can look the association’s 10 symptoms of Alzheimer’s.

This Saturday, the Alzheimer’s Association is hosting the 2016 Walk to End Alzheimer’s beginning at the Scottrade Center.

Looking toward the future

In the second part of the show, we discussed new research and medical treatments for people with Alzheimer’s. Suzanne Schindler, a neurologist with Washington University in St. Louis, joined the program with an optimistic outlook about the future of the disease.

Suzanne Schindler, a neurologist with Washington University in St. Louis.
Credit Kelly Moffitt | St. Louis Public Radio
Suzanne Schindler is a neurologist with Washington University.

She said that, over the past five years, big strides have been made in understanding proteins involved in Alzheimer’s — how they are made and processed. Drugs have been made that target those protein processes.

“Where we’re at now is where we’re testing those drugs on patients,” Schindler said. “Those trials take a long time, but hopefully, in the next five years we’ll have drugs that are approved that we can prescribe patients.”

These drugs are different, Schindler said, because they target the brain specifically and could help prevent the onset of Alzheimer’s, slow it down or reverse the process. Drugs currently prescribed help balance chemicals to soften the blow of symptoms of Alzheimer’s.

Schindler said she is specifically interested in research being done on the amyloid protein, which is believed to cause plaques in the brain which lead to the death of nerve cells that cause dementia.

This week alone, attention has turned to an experimental Alzheimer’s drug known as Aducanomab, which has targeted the amyloid protein and has been shown to reduce those brain plaques.

Schindler said that more testing needs to be done, but early evidence shows that dementia does not get worse after taking the drug. She said she’d even cautiously call it a “breakthrough.”

St. Louis on the Air brings you the stories of St. Louis and the people who live, work and create in our region. St. Louis on the Air host Don Marsh and producers Mary Edwards, Alex Heuer and Kelly Moffitt give you the information you need to make informed decisions and stay in touch with our diverse and vibrant St. Louis region. 

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This report was prepared with help from our Public Insight Network. Clickhereto learn more or join our conversation.

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Kelly Moffitt joined St. Louis Public Radio in 2015 as an online producer for St. Louis Public Radio's talk shows St. Louis on the Air.
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