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What We Know and What We Are Learning

JoAnn, a longtime Colorado Springs resident, still remembers the first time she noticed that all might not be well with Gary, the man to whom she’d been married for 20 years and had remained good friends with after the two divorced. “He was using poor judgment and was making decisions that were not in his best interests or the best interests of others,” she says, “like giving money to others when he needed it himself, or making big purchases like cars or motorcycles when he couldn’t afford it—things he wouldn’t have done before. His dialogue was also changing. He would use incorrect words for things when he meant something else. For example, he would use the term ‘messages’ when he meant ‘mail’ from the postman.”At one point JoAnn gave Gary, a lifelong reader and fly fisherman, a book about fly fishing from a favorite local author. “He told me he could read the words, but didn’t understand the content. He returned the book to me and said, ‘Thank you but I don’t know what it says.’”

Gary was diagnosed with frontotemporal dementia when he was 60 years old. “His journey was swift for someone so young,” says JoAnn. “He was forgetting things and could not remember how to spell several words that he used almost daily. He started speaking in short sentences, then two or three words and eventually lost his ability to speak. He didn’t always understand what I asked him, such as how he was doing, was he hungry, tired, in pain, etc. He seemed to know he had the disease but yet didn’t fully realize the impact of it.” 

According to the Mayo Clinic, “Dementia describes a group of symptoms affecting memory, thinking and social abilities severely enough to interfere with daily functioning. Dementia indicates problems with at least two brain functions, such as memory loss and impaired judgment or language, and the inability to perform some daily activities, such as paying bills or driving.”

Some cases of dementia are reversible with treatment, and some are not. The Mayo Clinic says dementia or dementia-like symptoms that may be reversed include those caused by fever or other side effects of the body’s attempt to fight infection, thyroid problems, low blood sugar, dehydration, reactions to medicines, substance abuse and exposure to heavy metals such as lead and to poisons such as pesticides. 

Those that are not reversible include Alzheimer’s disease, vascular dementia, Lewy body dementia and frontotemporal dementia. A number of health disorders have been linked to dementia, including Huntington’s disease, Parkinson’s, traumatic brain injury and Creutzfeldt-Jakob disease. 

Extensive research around preventing dementia is ongoing, and several possible risk factors have been identified, many of which we can be proactive in changing. According to the National Institutes of Health, risk factors include heavy alcohol use, Atherosclerosis, low or high blood pressure, cholesterol, depression, diabetes, high estrogen levels, homocysteine blood levels, obesity and smoking. 

For Gary, who had always taken good care of himself, the future was bleak. “His physical health declined since he was a lifelong asthmatic,” explains JoAnn. “He developed pneumonia several times, which reduced his lung capacity. He became sedentary and started to shuffle when he walked, a sign of Parkinson’s, which he also had.”

Gary was able to stay home for only a few months following diagnosis. JoAnn soon discovered he wasn’t eating or doing his laundry. “We went from meals being delivered by Silver Key and friends stopping in to play chess and eventually checkers to nothing at all. He couldn’t remember the purpose of the games. A caregiver was hired to help with meals, showers, medical care and housekeeping. He was on oxygen 24/7. When he began to wander away from home, seemingly lost, the decision was made to move him to a memory care facility.”

Gary passed away when he was 63. Due to a family history of dementia—his father passed away of the disease at the same age and his fraternal grandmother had the disease—an autopsy was performed to both give the family possible insights for future generations and to potentially shed light on the disease that might help others. The findings showed that Gary had frontotemporal lobar degeneration, Lewy body disease, Alzheimer’s disease, Parkinson’s and cerebral amyloid angiopathy.