The Putnam Family focuses on advocacy: Pictured are Dale Putnam with wife Sara, and daughters Maddie, Brecka, Tiffany and Shanna. (submitted photo)
The Putnam Family focuses on advocacy: Pictured are Dale Putnam with wife Sara, and daughters Maddie, Brecka, Tiffany and Shanna. (submitted photo)

“Modern medicine has done a wonderful job of treating major illnesses and extending a person’s life,” noted Brecka Putnam, hospice worker with Regional Health Services of Howard County and daughter to a parent with Lewy Body Dementia (LBD). “There is insulin to treat diabetes, pacemakers to moderate heart function, but you can still get Alzheimer’s or a related brain disease and be walking around with a terminal diagnosis. If it doesn’t affect you or someone you know, it will.”
The Alzheimer’s Association estimates that 10.7 percent of 65 and older population has Alzheimer’s or other dementia. Of those 85 and over, 33.2 percent have Alzheimer’s or other dementia. Researchers believe about 0.11 percent of people under 65 have younger-onset dementia. None of the symptoms can be truly and accurately diagnosed except through an autopsy – in the end, it is the same for all, a terminal disease.
Brecka’s father, Dale Putnam, was one of the rare cases, diagnosed at 57 years old with LBD. A practicing lawyer, avid bicyclist and fervent volunteer in the community, it was a complete shock. “Here we had a perfectly healthy family member, with no family history, no predisposition to this, experiencing cognitive decline,” noted Brecka. “He knew – he felt something wasn’t right, and he advocated with his medical team for a diagnosis.” 
“Then we followed his lead. To him, advocacy was important – it is important to all of us.” Brecka shared that her dad made videos of his first-hand experiences through the disease process. He participated in clinical trials for medications to reduce symptoms and enable more “good days.”
“We [the family] started talking with the social worker and called the Alzheimer’s Association to educate ourselves. We wanted to find out what to do to prolong his good days. They have a 24-hour hotline for caregivers that is so helpful, because there will be a time where you’re like, ‘what do I do now?’ Even the local support groups were an asset. Those experiences were great to glean information from.”
Brecka noted that they even found, albeit too late, the 10 signs you should see your physician – early warning signs of dementia in the early stages on the Alzheimer’s Association website.  
“We may not have a cure, but we can work together to help find one, so we just decided one day we were going to open up and advocate and raise awareness for this. “Talking about it more I think is so beneficial – the sooner you think you have signs, go to the doctor, go get help. There truly is a benefit to establishing a good relationship with a primary care physician now, who can watch and also observe you over time, instead of trying to see someone new later in life, and not knowing your ‘normal.’”
Brecka stated that she worries about having the infrastructure available for the patients of tomorrow, “I basically followed my dad to hospice – I was in children’s cancer research but joined Howard County Regional Health Services hospice team when I moved back. It does scare me though, I don’t see that America has the physical infrastructure to handle this dramatic increase in dementia care that will be needed as the numbers are estimated to double by 2050, especially in 85 and overs.” Dale moved into Aase Haugen in 2018, later transitioning into a special dementia-care unit.
While Dale was able to get extra medical attention from participation in the clinical trials, he is currently on hospice care at Aase Haugen Senior Services, one of few specialized Chronic, Confusing or Dementing Illness (CCDI) Units in the area. Shortly after moving to hospice level of care last fall, hospice staff surprised Dale with a trail ride using an inductive bike. His friend powered the bike as they rode one last time on the trail, where Dale loved to spend time and gather with people. “That was my dad, he liked to bike and hang out with cool people,” Brecka added. “There are a million things to grieve with dementia. We are hoping that by sharing our experiences and advocating for Alzheimer’s Association, we hope to see a cure – or at least preventative measures.”
On June 18, three of the Putnam daughters participated in Bikes Behind Brains – a fundraising bike ride in Cedar Rapids with a goal to raise $25,000 for Alzheimer’s Association research each year. The family shared their story with the community and hopes to encourage others to make a positive difference against this dreaded disease.
The hardest challenge was COVID-19 restrictions in 2020-21. “We went in the day before they closed the unit to visitors. I remember him not wanting us to leave. Watching the staff open Christmas presents with him through the window of the CCDI when it was five below. The staff did their best, and we included them in all our family rituals – Halloween parade, prom, making snowmen – during that time. But we have to think – what did we lose during that time we couldn’t be in visiting with him? “
Brecka interjected, “The unexpected part of this experience has been when people share their very beautiful moments with us – when we didn’t realize how much they cared about dad, or how deeply he had touched their life – how he helped them or had fought for them and how much it meant.  That’s what we appreciate – share with us his positive memories.”

10 Early Signs and Symptoms of Alzheimer's
1. Memory loss that disrupts daily life
2. Challenges in planning or solving problems
3. Difficulty completing familiar tasks
4. Confusion with time or place
5. Trouble understanding visual images and spatial relationships
6. New problems with words in speaking or writing
7. Misplacing things and losing the ability to retrace steps
8. Decreased or poor judgment
9. Withdrawal from work or social activities
10. Changes in mood and personality