By: NICOLAS FIERRO
Salina Post
Dementia and Alzheimer’s (which is in the umbrella of dementia) is the disease that although no exact cure has been discovered, there are still ways to navigate it.
Salina Post sat down with Brooke Bryson, who is OCCK’s Cognitive Care Navigator, Quality Services Coordinator and Alzheimer’s Specialist to discuss important information and resources people and caregivers need to know when combating the disease.
Bryson started with OCCK four years ago and has been part of the Alzheimer’s Program, benefitting both patients and caregivers for the past 8 years.
OCCK has partnered with KU Alzheimer’s Disease Research Center (KUADRC) as part of the program, and since then has grown.
Programs have been developed as outreach services to help meet, educate and care for those who have or may have been diagnosed with the disease.
Bryson stated she has met over 150 families that were part of programs to give them assistance. She now works within the brain injury program.
"Being Proactive” is a program created by OCCK through Michelle Niedens from the Cognitive Care Network out the KUADRC, is a presentation specifically about the I/DD (Intellectual and Developmental Disability) population and effects of dementia; such as individuals who have Down Syndrome are at a greater risk to develop Alzheimer's as they have 3 copies of chromosome 21.
Addressed in the presentation, is that the standard retraining methods currently used will not be effective, as the disease takes away memory recall. Moving to a more tailored supportive hands on assistance helps the individual, if their health declines due to the disease.
Individuals can receive support from within a 100-mile radius by OCCK and anyone outside of the radius across Kansas and into Missouri, can be treated by KUADRC.
“It worked out really well to have that partnership. To be on people’s couch is much different than talking to someone on the phone,” said Bryson.
It’s important to note, your brain changes up to 10 years before anyone has their first symptom of Alzheimer’s or dementia.
A 2024 study that OCCK provided showed that there were 55,000 people diagnosed with Alzheimer’s in Kansas. Moreover, there were 152,000 caregivers and $173 million out-of-pocket in unpaid care.
Alzheimer’s is the 5th leading cause of death.
Early Detection
Bryson said when she attends different health fairs, she speaks with individuals about the need for early detection.
“The sooner we know what’s going on the better,” she said.
The recommended age to get an early detection for any signs of Alzheimer’s or dementia is 55, but could even be as early as 45.
“We are seeing a lot more early onset, because our ability to detect the disease is getting better,” Bryson said.
At the age of 55, people can start to have “aging issues” and there needs to be a determination on whether it’s a vitamin deficiency, normal aging and/or other things that are treatable. However, if there is a prolonged amount of time in not taking care of those issues, then there is a high chance of it leading to Alzheimer’s according to Bryson.
“It may not be Alzheimer’s in the beginning, it could be something else and we want to rule those out as quickly as possible.”
One in nine people at age 65 have some form of dementia, and goes up to one in three people at age 80.
Early detection is known to be an empowerment since it rules out non-dementia causes, increases quality of life, effectiveness of treatments, building a support team, prioritizing and planning ahead.
Aging Brain
Signs of an aging brain according to OCCK include:
- Slower processing.
- “Tip of the Tongue” effect (frustrating, temporary inability to recall a known word or name from memory).
- Difficulty multitasking.
- Less adaptable.
- Spatial relationships decline.
Signs and symptoms, ways to slow down dementia
The telltale signs of dementia according to the CDC include:
- Making poor judgements and decisions.
- Getting lost in a familiar neighborhood.
- Using unusual words to refer to familiar objects.
- Forgetting the name of a close family member or friend.
- Forgetting old memories.
- Not being able to complete common tasks on your own.
CDC displayed the symptoms of people having problems with one or more aspects, which include:
- Memory
- Attention
- Communication
- Reasoning, judgment, and problem solving
- Vision problems such as depth perception, processing visual cues, or recognizing objects
Ways to slow down dementia
Bryson said whatever is good for the heart is good for the brain.
She stated a Mediterranean and Dash are good diets. Some researchers even recommend Keto.
Involving yourself or getting your loved one in activities, conducting personal finances, performing household chores, being outdoors, wearing glasses/hearing aids, playing games, learning new things are all but a few ways to help with slowing down dementia and maintaining a healthy brain by building brain elasticity.
Bryson stated that anesthesia has a huge effect on the brain for older adults, since they will have a longer recovery time, which can create memory loss. She recommends having a serious conversation with your doctor, before taking anesthesia for a particular procedure and finding an alternative by asking questions.
Moreover, a person who is experiencing dementia will not be able to accurately self analyze. Therefore, a person who knows them well, will need to complete the screening.
Testimony from a Caregiver
Salina Post spoke with Peggy Simms, who was the director, playwright and choreographer of "It's All About Love: A Caregiver's Journey Through Alzheimer's," that performed at Kansas Wesleyan University and other venues in the past.
Simms was a caregiver for her husband, Chuck who passed away from Alzheimer's in 2020.
She shared with the Post the challenges she faced as a caregiver, how others helped her and Chuck, the biggest takeaways from her caregiving experience and advice for those who went or are going through the same events.
"The first challenge when I became a caregiver was to try to look realistically at the needs of my husband on a daily basis," Simms said. "We were retired, and I did my best to include him in what we could do together that was on our bucket list such as travel, hike together while we are able and just about anything we could comfortably do together."
"On the practical side, I looked around at our home and made notes on changes I would need to make for his safety and for him to live in a way to keep him feeling independent. I made an effort to keep him social as long as he was comfortable around people and before the anxiety attacks started. My family and neighbors helped us stay active by inviting us to events, dinner, and social hours. They would visit often and when he couldn't stay alone, they would sit with him so I could get a break for a few hours."
Due to the timing of the caregiving experience happening during COVID, Simms said this added an extra challenge.
"It got really tough for me through COVID. I felt so isolated and it made it challenging to keep him in a routine. He didn't understand why he couldn't go visit family and do other things socially. I learned to roll with it every day and the challenges that showed up."
However, thanks to the generous helping hands from her family, friends and neighbors, this helped her learn to be gentle with herself and not expect to do everything perfectly.
"I learned to lean on others, especially my family and close friends when I was at the end of my rope. I was given inspirational books and received texts every day from someone giving me pep talks and telling me I was doing a good job, and that they love me. I learned to be gentle with myself and not to expect to do everything perfectly. I let myself cry and process the realization that caregiving is a grieving experience too."
Since Simms has lived through the experience of caregiving and faced the challenges, she shared meaningful advice to assist the journey for others.
"If you are a caregiver, lean on those who are willing to listen, want to bring you dinner and want to hug you. Try to find some time in the exhausting day to give yourself a chance to recharge even if it is 15 minutes. Learn to breathe, slow down, and be mindful to meditate. Journaling is a great outlet. You can say anything you want to, it's like venting."
"Always remember how much love you have for each other and that we all hope to keep our dignity in the most difficult times. You will never be sorry if you give from the goodness of your heart, think the best of yourself and the best of others. I gave it my all and I have no regrets."
Important Resources
KU Alzheimer’s Disease Research Center:
- Research and trials
- Cognitive Care Network
OCCK:
- Cognitive Care Navigators
- SOC (adaptive devices)
- Home health
- Home care
- Telemonitoring for chronic issues
- Transportation
- Therapy teams (PT, OT, SLP)
Link to KUADRC resources, click here.
Link to OCCK resources, click here.
“Nobody wants to go to the nursing home and the image people have of that is horrible,” Bryson said. “That is probably the smallest amount of time they will be in that late stage where they can’t function on their own.”