Living with dementia: Hope for the future
(KFVS) - Alzheimer's is the sixth leading cause of death in the United States.
At this time, it cannot be prevented, cured or even slowed.
"We're staring down the barrel of 15 million people with Alzheimer's by mid-century," said Dr. David Carr. "We've got to find something now to delay it or cure it."
At Washington University in St. Louis, researchers are focused on the future.
At the Anne Fagan lab, they collect spinal fluid from research volunteers to find out whether someone has the hallmark pathology of Alzheimer's disease in the brain, even before they show symptoms.
The hope is to use that information in clinical settings to help doctors diagnose the disease and start treatments once they are developed.
Also at Washington University, a study is being conducted called the Dominantly Inherited Alzheimer Network, or DIAN.
Researchers are looking at a rare form of the disease caused by a gene mutation.
The scientists are studying participants who are adult children of parents with a gene known to cause Alzheimer's.
"These individuals if unfortunately they get the gene they will get Alzheimer's disease, average age of onset is 45 years old," said Dr. Carr-Director of Geriatrics, Washington University School of Medicine.
They're trying to understand the cause, with the hope of tackling the disease way ahead of time.
"We know inflammation is part of the pathology, cells deprived of energy is part of it," said Dr. Carr.
Doctor Carr believes more research is needed in terms of pharmaceuticals.
"Probably what we need to start doing is not just study one drug, but look at multiple mechanisms, cocktails and that is coming," said Dr. Carr.
Stacy Tew-Lovasz is the president of the St. Louis Chapter of the Alzheimer's Association.
The organization covers 38 counties, including southeast Missouri.
"Three to five years ago the only way to get a diagnosis was through an autopsy," said Tew-Lovasz. "That shows you the strides we are making."
These days, a patient can be diagnosed through CT scan, MRI, or other types of memory testing.
However, Tew-Lovasz says many of these are often not covered by Medicare or insurance, so many patients don't bother.
"But, the good news is with continued research and dollars going into research we are looking at blood as a way to detect," said Tew-Lovasz.
She says a blood test, may be even a saliva test, or an eye test could one day be available.
"Researchers say we are beyond hope," said Tew-Lovasz. "We are looking at plans and dates."
As for right now, Doctor Carr said there are things you can do to lower your risks.
Exercise for 30 minutes four to five times a week.
Nutrition is also very important. Dr. Carr said studies showing fewer carbs, more fruits and veggies, berries and fish can decrease inflammation.
"The modifications that are good for the heart are also good for the brain," said Dr. Carr.
He said socialization is also key.
"It appears people who stay active are engaged in their community have a benefit, versus someone who is sedentary, stays at home," said Dr. Carr.
That's what we can do now as we wait for advancements in the future which could happen sooner, rather than later.
"We've cured Alzheimer's disease in basic science mice models, just eliminated it," said Dr. Carr. "So, it's a big step to go to clinical trials in humans, but I do think it can happen in our lifetime."
The month of June is Alzheimer's and brain awareness month.
For more information on how you can get involved, or help with research: call (800) 272-3900 or click here to visit them online.
Support for caregivers
Right now, 5.4 million Americans are living with Alzheimer's disease, and that number is expected to triple by 2050.
According to the Alzheimer's Association, more than 200,000 of those individuals are under the age of 65.
"You don't have to look far to find a family member or friend a neighbor or somebody at the line at the grocery store," said Stacy Tew-Lovasz, president of the St. Louis Chapter of the Alzheimer's Association.
We all know someone affected by this disease.
It's emotionally draining, physically draining and financially draining.
Many caregivers are going broke as they try to figure out how to care for their loved ones.
According to the Alzheimer's Association, caregivers even sacrifice their own food and medical care to support their loved ones living with this disease.
Connie McCart doesn't know where she would be emotionally without her support group.
"I think God has a purpose for people he puts in our path, I'm so thankful for this group," said Connie McCart.
Connie and Larry McCart are celebrating 56 years of marriage.
When Larry retired in 2001, the couple made big plans.
"Traveling was going to be one of our big adventures," said Connie.
And, many adventures they did have...until things changed with Larry.
"I knew there were problems and seemed to be more than forgetfulness," said Connie.
In 2011, Larry was diagnosed with dementia, likely from Alzheimer's disease.
"That was the beginning," said Connie.
Larry had good days and bad days.
"The hardest part for me was getting him to understand something...I would try and try," said Connie.
And she did, until just recently.
Larry is now in a care facility.
It was one of the hardest decisions Connie has ever made.
"I see him every day. I couldn't go without seeing him," said Connie.
He is the love of her life, and she wants the best possible care for him.
Connie realized she also needed help.
She turned to a support group in Cape Girardeau where once a month about a dozen caregivers get together to share and live this journey together.
"It's so safe to be able to share your challenge, you say anything you need to say," said Connie.
"Our biggest challenge is to get the tools and resources into the hands of individuals with the disease and their families," said Stacy Tew-Lovasz.
Tew Lovasz said many times people don't realize how much this disease will take over their lives.
"Because of the devastation and the duration of the disease, you need at least three caregivers to care for that person during that time," said Tew-Lovasz.
Which, in many cases, may not be possible.
It leaves primary caregivers feeling beat down and often depressed.
"A lot of times people feel isolated and alone in what they're doing, that they are the only ones having these issues they're dealing with," said Carol Dippold.
Dippold has lead a support group in Cape Girardeau for 25 years.
The group meets once a month at the Lutheran Family and Children's Services building on Blattner Drive.
"It brings people together and many hear one another's stories and they realize, I'm not the only one," said Dippold. "It's a shoulder to cry on, someone to be there."
Which is exactly what it's been like for Connie McCart.
There's comfort in knowing we share the same thing, want the same thing...love the same people," said Connie.
If you need to talk to someone, you can call the toll free helpline through the Alzheimer's Association 24 hours a day, seven days a week at 800-272-3900.
Learning to cope
Irma Esselman is 88 years old.
She loves to paint, and stays busy with her embroidery work. She has vivid memories of her childhood.
"I lived on a farm, I raised chickens...plowed and worked the fields," said Irma.
Later in life she recalls her many jobs.
"I worked at jewelry shops, I worked at a restaurant, typed up oil leases."
As for present tense, her memory is very short lived.
She cannot recall how long she has lived in her current apartment, or what she had for breakfast.
Irma's sister, Jeanette, looks after her.
"I'll come in and say do you need something new or something she'll say she needs a new head, so she knows she has some loss of memory," said Jeanette Sutterer.
Irma started losing her memory after undergoing heart surgery.
Doctors told her sister, a lack of oxygen to the brain may be the reason.
"I once worked for a jeweler...he trusted me. I would put the diamonds in a safe and lock them up," said Irma.
"See...she remembers from her past, but this morning when she got up she doesn't remember," said Jeanette.
Casey Ellis is the social services director for the Independence Care Center in Perryville.
They currently need more space for patients with dementia.
"We're going from 12 beds to 23 beds because we have such a long waiting list that we find in the community is a definite need," said Casey Ellis.
Alzheimer's disease is the most common form of dementia, although there are many different types.
"I get calls all the time and we have a long waiting list for our creative care which focuses on dementia care," said Ellis.
Ellis said more patients are being diagnosed these days with Alzheimer's and other forms of dementia.
She said there seems to be a greater awareness, yet the stigma remains.
"Dementia is one of the most difficult diseases they [families] are going to have to deal with because there's no road map to tell you what it's going to bring," said Ellis.
Mardell Granger knows that first hand.
Her husband, Ralph, is the same man she married 37 years ago, but no doubt things have changed.
"I handle this pretty well now, but in the beginning, the first years I didn't handle it well," said Mardell Granger. "I thought, come on, pull yourself together and then I was like...you make the best of what you can do and we found things we could do together."
Stroke-induced dementia has fogged Ralph's memory, but he focuses on what he can remember.
Visiting her husband in a nursing home isn't ideal, but Mardell has learned to cope.
"That's not to say every day is wonderful. No, there are days I leave here and I cry all the way home, but that's ok," said Mardell.
Dementia also deteriorates emotional control, social behavior, and motivation, further adding to the frustration felt by family members who just want their loved one to be the same.
"Just go with the flow is a huge thing for families to try and accept and do," said Casey Ellis.
"There's a lot of patience involved, and I think love involves a certain amount of suffering," said Jeanette Sutterer.
Jeanette knows this journey with her sister won't be easy, even Irma knows that
"Just one day at a time, one day at a time and hope we do ok," said Irma.
Mardell Granger said families can't get through this alone.
"You need a support system for one thing," said Mardell.
Support and ultimately finding the joy in those good days, and the strength to face the bad ones.
"You have to accept it. Yes you'll deny it, you'll want to fight it, you'll reach the point where it's ok," said Mardell. "We can get through this, it's not easy, but you have to take it one day at a time."
If you are experiencing this right now, do you have people to help you along the way?
There might be a support group in your community and you may not even realize it.
The agency's programs and services can be also be accessed via the 24/7 helpline at (800) 272-3900.
The Stories Behind the Diagnosis
Dementia affects more than 47 million people worldwide, and that number is expected to nearly double in 20 years.
It's frightening, and chances are you or someone close to you has experienced or is experiencing the heartache right now.
We often hear the facts and figures, and the latest studies. Rarely do we see the stories of the people behind the diagnosis and their struggles, or their victories. Their willingness to open up helps us to understand.
"He said, 'I love you and I want you to be my wife,'" recalled Mardell Granger.
Mardell reflected back to the summer of 1979 when she married Ralph Granger.
They had big plans for their future, for retirement...their golden years.
"As the years went on, he was slowing down and slowing down," said Mardell.
Even so, they continued to dream.
Ralph, a teacher went back to school to pursue his doctorate. In 2001, right before finishing that degree, Ralph got sick.
"We got to the hospital and he was in congestive heart failure," said Mardell. "He had multiple strokes. He didn't wake up for a week."
And when he did, he wasn't the same.
"He had no idea he had been working on his doctorate, memory was just gone," said Mardell.
The diagnosis was stroke-induced dementia.
Mardell started out trying to take care of her husband on her own.
"The hardest part was one day he was fine, the next day he wasn't...it happened so quickly," said Mardell. "It was hard for me to accept my life is different."
Eventually she found she couldn't do it by herself.
"He left the house a couple of nights," said Mardell.
Scared he would do it again, and fearing the worst, she turned to a care center.
Ralph has good days and bad days.
"This isn't a good day, so he's having trouble," said Mardell. "I wish at times that I would have known it was as good as it was going to get because I keep wanting to go back to that because it was really good then, and I didn't appreciate it, so appreciate every day you have."
Ralph doesn't have a whole lot to say, but wants everyone to know he's the same man...deep down.
Many memories remain, he recalls being a teacher, and a coach. He gets confused sometimes, and the details might not always be clear. However, he's still enjoying the beauty in life, like the woman he married and the bond they continue to share.
"I think it has gotten stronger," said Mardell.
When asked how much he appreciates his wife, Ralph said with a smile, "A whole bunch."
"He's just always been there for me, he's always been my support," said Mardell. "I would be lost without Ralph."
According to the World Health Organization, dementia is one of the major causes of disability and dependency among older people worldwide. It is overwhelming not only for the people who have it, but also for their caregivers and families.
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