A year ago, the family of actor Bruce Willis shared the news that the actor had been diagnosed with dementia. Best known as the star of the “Die Hard” movie series, Willis has a less common form of the illness, frontotemporal dementia, which can cause challenges in communication, as well as changes to one’s behavior, personality, or movement. The diagnosis helped his family get the right treatment to support him, something my father never got.
For more than 20 years, my Papito [Daddy] lived in a fog, with mood swings, diminished focus, attention, problem-solving skills, and a limited perception of reality.
Although Dad received quality medical care for his diabetes and congestive heart failure, I feel doctors should have determined the cause of his symptoms, something that would have allowed my family to provide a more effective treatment for the cruel monster that robbed my father’s mind.
On the 14th anniversary of my 87-year-old father’s death, I still ask myself and my siblings: why didn’t Dad ever get tested for dementia?
I somehow understand why.
Disparities in Dementia Care
The spotlight on Bruce Willis’ dementia and his care continues to shed light on this incurable illness that affects Latinos/Hispanics 1.5 times more likely than Whites, according to the Alzheimer’s Association.
In addition, new research from UC Davis Health and the Oregon Health & Science University reveals “significant disparities in dementia care,” in the United States, especially among Latinos. Researchers have found that Latinos and African Americans living with dementia in the United States are less likely to receive accurate and timely dementia diagnosis compared to non-Hispanic whites.
Research shows it took 40% longer for Hispanic Americans and 11% longer for Black Americans to be diagnosed with dementia. Both communities were also less likely to be referred for neuropsychological testing. They were also less likely to be prescribed anti-dementia medication or use hospice care.
Dementia Tools
Compassion & Choices offers an interactive Dementia Values & Priorities Tool (compassionandchoices.org/dementia-values-tool) to document your wishes regarding the care you want and create an addendum that can be added to your existing Advance Directive.
This dementia care planning tool is especially important for Hispanics and Latinos because of the healthcare disparities that prevail in our community.
The Monster
Our family knew little about dementia.
We thought Dad’s short-term memory loss, confusion, anxiety, and hallucinations were side effects of the more than a dozen pills he took throughout the day for his diabetes and hypertension. Sadly, doctors in my hometown in Brownsville, Texas only focused on treating Dad’s chronic conditions, including the obstructive pulmonary disease (COPD) that mom also had.
Now that I look back, I see that Dad had all the symptoms of vascular dementia from the mini-stroke he suffered during open heart surgery in the early 1990s. Dad’s thinking skills were severely impacted since the surgery that nearly killed him. Doctors said the confusion was possibly from the block of oxygen to his brain.
“You are not feeding me,” Dad would often say an hour after breakfast.
“That monster stole my wallet, he robbed me and took the keys to my business,” Dad would yell as he pointed at an empty wall. “He left me bankrupt.”
It breaks my heart to recall Mom’s tears after Dad’s abrupt mood swings, and the lack of control of his emotions that at times led to a change in his personality.
“Dad has no sympathy for how I feel… his words hurt me,” Mom would say, without knowing that her husband of 62 years lacked the cognitive capacity to understand his behavior.
I often wonder how different Dad’s last years would have been had we known he had dementia.
I have no doubt we would have better known how to handle that cruel monster that robbed Papi’s mind.
Patricia A. González-Portillo is a former journalist for The Brownsville [Texas] Herald, The [Riverside, CA] Press-Enterprise, and La Opinión [Los Angeles], Currently, she is the national Latino Media Director at Compassion & Choices CompassionAndChoices.org.