How to Find Purpose After Brain Related Cognitive Impairments

By Eliza Marie Somers

Research reveals that people who have a life purpose can stave off cognitive decline and even Alzheimer’s disease. However, the bad news is people who have suffered a traumatic brain injury or already have been diagnosed with Alzheimer’s tend to struggle with finding a life purpose.

So how does one go about finding a purpose while living with a brain injury and/or Alzheimer’s disease? Finding answers to those questions was the focus of the Brain Injury Hope Foundation’s Survivor Series: How to Find Purpose After Brain Related Cognitive Impairments on May 10, 2024 via Zoom.

The panelist included:

• Joanna Fix, Ph.D., former educator, who is living with Alzheimer’s disease
• Kelly Osthoff, MA, Senior Director of Programs at Alzheimer’s Association Colorado Chapter
• Terri Mongait, EGC, Author and Speaker, Brain Injury Survivor
• Facilitator: Joanne Cohen, Vice President Brain Injury Hope Foundation and a TBI survivor

Terri Mongait likes to say she had an “opportunity to experience a brain injury.” Before the injury, Mongait was a senior executive with the Walt Disney company. Today she owns the Begin Again Ranch where she is a certified Equine Gesalt Coach and Canfield Methodology Trainer, along with being a published author. She can be reached at https://beginagainranch.com/

While recovering at a rehabilitation facility, the medical staff told Mongait that her brain function was in the 2-3 range out of 10 and even after a few years her brain might be in the 2-5 range.

“That didn’t sit right with me,” she explained. “There’s so much the brain can do that we don’t know yet. So, I knew that if I gave myself time to reweave my neuropathways that I knew that I would be able to have value and have a purpose. And since the brain injury I’ve moved to Colorado to a 6-acre ranch, I work with clients with and without brain injuries with my Equine Gesalt coaching program.

“I say to my clients: Are we dented, yes. Are we completely broken, no. So, let’s figure out what works for you. I like to work with people and help them figure out what will work for you now. …A lot of my recovery stemmed from the fact that I didn’t see my injury as the end. When something didn’t work, instead of getting angry or depressed I would just say, ‘Wow that was different. What can I do to help myself and make it work.’ That’s the positive offering I give to my clients.”

Ways to find purpose:

• “Reconnect with the things you loved to do,” Joanna Fix.
• “Just trying different things out can help you find your purpose,” Joanne Cohen.
• “Acknowledging the person and recognizing that if someone was always a painter they still can paint. They might need assistance or adaptations as Alzheimer’s progresses,” Kelly Osthoff.

While working at the University of the Pacific in Stockton, Calif., where she was a psychology professor, Joanna Fix had trouble maintaining her job. Unknown to her and her employer at the time was she was suffering from young-onset Alzheimer’s disease. She was asked to retire at age 42, and she didn’t receive the Alzheimer’s diagnosis until about six years later.

Joanna Fix uses her platform as Mrs. Colorado Springs to educate people about Alzheimer’s disease.

“It was a challenge for me to even wake up,” Fix said, who went to numerous doctors even after the Alzheimer’s diagnosis.

Fix found her purpose when the Alzheimer’s Association of Colorado asked her to be a keynote speaker at its Reason to Hope fundraiser.

“That was a turning point,” Fix said. “It was the first time I had an opportunity to be a teacher since I had been let go. I felt like I found my people. I’ve never been happier. I have more friends now than I did before the diagnosis.”

Fix also is using her platform as Mrs. Colorado Springs to educate people about Alzheimer’s disease and what it is like living with the disease.

“It’s like being in jail,” she explained. “We still have the same thoughts and emotions, but they don’t translate into the right behavior. … I don’t have that choice to shift my response. People with dementia don’t have that skill anymore.”

It’s as if she doesn’t have any filters, she said.

Detecting young-onset Alzheimer’s is difficult because doctors don’t tend to look for it in younger patients, said Kelly Osthoff, the senior director of programs at the Alzheimer’s Association of Colorado.

“It’s a very complicated two-part testing,” Osthoff said, “and with younger patients it makes it more complicated.

“Dementia is an umbrella term used to describe a variety of symptoms. Not just short-term memory loss, it can be word retrieval, personality changes, irritability, navigation issues, executive function loss.”

Facilitator Joanne Cohen noted that every single thing Osthoff listed are characteristics of a brain injury.

“The difference is the cause,” Osthoff said. “I’m not a brain injury expert, but a brain injury is an acute injury. Alzheimer’s is unique biological changes happening in the brain. So, Alzheimer’s is elevated amounts of amyloid proteins in the brain.”

Kelly Osthoff enjoys helping Alzheimer’s patients and their families navigate the system to find valuable resources.

Osthoff explained that the No. 1 risk of Alzheimer’s is aging, the second biggest risk factor is family history and genetics, and after that the strongest risks are brain injury, diabetes, heart conditions, not managing blood pressure, obesity, lack of exercise, and poor sleep and diet.

“As a risk factor a head injury is a significant risk factor, but it’s not necessary a guarantee.” However, people who suffer a TBI after age 65 have a 28 percent chance of developing dementia later in life.

Cohen interjected, “I hope that all of us here don’t get in a fear place because of this risk factor. Because if you keep focusing and focusing on something and have fear then you’re not out there living your life.”

There are several ways in to stave off Alzheimer’s and dementia. Osthoff emphasized resiliency and a positive outlook.

“There’s been research in the aging community, and resiliency and a positive outlook contribute more to how we grow older than anything. … Some patients will live in denial, and slump into a deep depression where others take the “bull by the horn” and deal with the diagnosis,” she said. “Typically, it has to do with coping skills someone has had throughout their life.”

The other factor that can hold off dementia and Alzheimer’s is taking your brain health seriously.

“What we are learning a lot with research is the power of the brain and what we can do to keep our brain healthy. … Getting enough exercise, eating a healthy diet, staying socially and cognitively engaged and getting enough sleep. That information is super helpful with people with dementia.”

Osthoff related a story about a friend in her 70s who started exercising, eating right and staying engaged socially. She started painting and drawing, something she had never done before and learned a new skill.

“The moral of the story is that people with Alzheimer’s can even learn new skills,” she said.

Unraveling her own stories in her new book, “Finding True Purpose: Life Beyond the Castle,” has helped Mongait in her work at the Begin Again Ranch.

She relates a story in which she believed that she had to “buy her way into community.”  As a child in order to hang out with her older sister, Mongait had to buy a tank of gas for the boat or buy lunch.

“What I was taught was that I was not good enough by just being me, but I could buy myself into community,” she said. That story was reinforced in grammar school, high school and even at her first job. Until that aha moment.

“This is the story that is giving me my limited beliefs,” she said. “Unraveling the stories I was able to understand when I get triggered and to choose a different response, instead of automatically responding to my triggers. That’s where I am now helping people write their stories that are feeding their limited beliefs.

“I have an opportunity to help people to work through there challenges. I’m so grateful I’m able to do this and offer this alternative therapy,” Mongait said.

Osthoff said she gets satisfaction in her job at the Alzheimer’s Association of Colorado when she works with Alzheimer’s patients and their families.

“We live in such a busy society … in this world of more, more more. And every single time that I’m with someone with dementia I’m reminded of the joy that can be found in living in the moment,” Osthoff said. “Even if that moment is super simple, just to take it day by day. That’s really the gift that I’ve been given.”