WICHITA, Kan. (KSNW) – In the next minute, someone will be diagnosed with Alzheimer’s, and as researchers work to gain more information on the disease, they are also looking into a new pathway to dementia.
Those dealing with Alzheimer’s now could be the key to helping unlock so many medical mysteries.
One caregiver’s journey
“This is a memory box that I put together of my parents,” Rayna Neies said.
At the age most teens are worried about high school and dating, that was not the case for Rayna Neises.
“I was so young with my Mom it was harder, but I also look at that time of just being able to take care of her, and we just sat for hours and listened to Elvis, and sang, she just loved to do that and that was some of her favorite things,” Neises said.
Rayna’s mother had early onset Alzheimer’s.
“I was 28 when she passed away and just seven years later, my Dad was diagnosed with Alzheimer’s, so that journey began again,” Neises said.
Rayna then became her father’s caregiver.
“We were all so surprised, you know, you just don’t expect it to be, hit both parents,” Neises said.
She said their journeys with Alzheimer’s were very different.
“She became nonverbal, probably within about three years, and so most of my early adulthood she wasn’t really able to talk or carry on a conversation, so that care giving role came in pretty early,” Neises said.
She said since they had been through the battle with her mother, they knew what was coming and could have the tough conversations needed to provide the best care for her father.
“He asked us to be able to stay at home as long as possible, and we were blessed that he had prepared financially and had long term care insurance and things like that, that allowed us to do that,” Neises said.
She said their family walked together for more than 20 years in the Alzheimer’s Association’s “Walk to End Alzheimer’s” and the nonprofit is on a mission to do just that.
A new threat emerges
“They are targeting dementia on so many different levels, that’s why we are seeing so much different research and even LATE coming up,” Alzheimer’s Association Program Director Breana Tucker said.
LATE, or limbic-predominant age related TDP 43 encephalopathy is being described as a new pathway to dementia.
It’s clinical symptoms and behaviors mimic Alzheimer’s.
“Such as problems with memory, thinking, and behavior, and even some of the other behavior symptoms such as agitation, or depression,” Tucker said.
Although research into LATE has been ongoing for about 15 years, experts say there is still so much to learn.
They say many patients, who were assumed to have Alzheimer’s are actually suffering from LATE, meaning their treatment should be different.
It is most common in those over 80 years old, and researchers say one in four people over the age of 85 have enough of the protein in their brain to develop the disorder.
“We believe in early detection and diagnosis,” Tucker said.
The Alzheimer’s Association has pledged millions of dollars to ensure research on LATE continues.
“In order for us to figure out what in the World is happening in our brains, that’s causing it, we have to have people who are willing to step into that and do the experimental trials and see what is going to work for them,” Neises said.
Both Rayna’s parents participated in clinical trials, and her mother’s brain was donated to science.
“They did find tangles, which is the typical thing that they find in the brain, where that protein has wrapped around the dendrites and broken them, until they just look like a tangled mess,” Neises said.
Rayna knows what they learned through her parents’ battles will help others who are diagnosed in the future.
She also offered this advice for the families of the newly diagnosed.
“If you can just lead with love and always come at it with love, no matter what they are saying, no matter what they are doing, it’s not easy to do, but if you can, it really will make the difference,” Neises said.
She said it is also important to find a doctor who will always listen.
“Be an advocate, be a part of the team, find people who will listen to you and be with you on that team, so you really can keep them happy and healthy as long as possible,” Neises said.
Neises is so thankful for memories she will always cherish, as she continues to help those who face the future, she knows all too well.
She says it is important for caregivers to know they are not alone.
“We are just working hard behind the scenes, and we are just focused on our loved one, and we are doing it out of love for them, so we just don’t realize we need support,” Neises said.
She is now a certified life coach and is helping others navigate this very difficult process.
She says she hopes to help those who are moving through this season of caring for aging parents.
“Being able to come along side them and support them and just help them to make those tough choices,” Neises said.
For more information on a caregiver support group hosted by Rayna Neises, just reach out to her via email at email@example.com.
This group is open to anyone, who is caring for a loved one.
You can also find more information about support groups and programs Rayna offers at ASeasonofCaring.com.
If you are interested in participating in clinical trials visit alz.org.