A year ago, the family of actor Bruce Willis announced that the actor had been diagnosed with dementia. Best known as the star of the “Die Hard” film series, Willis suffers from a less common form of the disease, frontotemporal dementia, which can cause communication problems, as well as changes in behavior, personality or movements. The diagnosis helped his family get the proper treatment to support him, something my father never received.
For over 20 years, my Papito (dad) lived in a fog, with mood swings, decreased concentration, attention, problem-solving skills, and limited perception of reality.
Although Dad received quality medical care for his diabetes and congestive heart failure, I believe doctors should have determined the cause of his symptoms, which would have allowed my family to provide more effective treatment for the cruel monster that stole my father’s spirit.
On the 14th anniversary of my father’s death at age 87, I still ask myself and my siblings: why did Dad never have a dementia test?
I kind of understand why.
Disparities in dementia care
The spotlight on Bruce Willis’ dementia and his care continues to shine a light on this incurable disease that affects Latinos/Hispanics 1.5 times more often than whites, according to the Alzheimer’s Association.
Additionally, new research from UC Davis Health and Oregon Health & Science University finds “significant disparities in dementia care” in the United States, particularly among Latinos. Researchers have found that Latinos and African Americans living with dementia in the United States are less likely to receive an accurate and timely dementia diagnosis compared to non-Hispanic whites.
Research shows that it took Hispanic Americans 40% longer and Black Americans 11% longer to receive a dementia diagnosis. Both communities were also less likely to be referred for neuropsychological testing. They were also less likely to be prescribed dementia medications or seek palliative care.
Compassion & Choices offers an interactive dementia values and priorities tool (compassionandchoices.org/dementia-values-tool) to document your wishes for your desired care and create an addendum that can be added to your advance directive existing.
This dementia care planning tool is especially important for Hispanics and Latinos because of the health care disparities that are prevalent in our community.
Our family knew little about dementia.
We thought Dad’s short-term memory loss, confusion, anxiety and hallucinations were side effects of more than a dozen pills he took throughout the day for his diabetes and hypertension . Unfortunately, the doctors in my hometown of Brownsville, Texas, were focused solely on treating Dad’s chronic illnesses, including Obstructive Pulmonary Disease (COPD) that Mom also suffered from.
Now that I look back, I see that Dad had all the symptoms of vascular dementia following the mini-stroke he suffered during open heart surgery in the early 1990s. Dad’s thinking skills were seriously affected since the operation which almost killed him. Doctors said the confusion may have come from the oxygen block being sent to his brain.
“You’re not feeding me,” Dad would often say an hour after breakfast.
“This monster stole my wallet, robbed me and took the keys to my business,” Dad shouted, pointing to an empty wall. “He left me bankrupt.”
It breaks my heart to think of Mom’s tears after Dad’s sudden mood swings and lack of control over his emotions that sometimes led to a change in his personality.
“Dad has no sympathy for what I feel…his words hurt me,” Mom said, without knowing that her husband of 62 years did not have the cognitive capacity to understand his behavior.
I often wonder how different Dad’s final years would have been if we had known he had dementia.
I’m convinced we would have known better how to deal with this cruel monster who stole Papi’s mind.
Patricia A. González-Portillo is a former reporter for the Brownsville (Texas) Herald, The (Riverside, CA) Press-Enterprise and La Opinión (Los Angeles). She is currently the National Director of Latin American Media at Compassion & Choices CompassionAndChoices. .org.
California Daily Newspapers