An opinion column published in the Los Angeles Daily News highlights healthcare-based racial disparities that often leave the Latino and Black/African American communities without proper dementia care. Author Patricia A. González-Portillo shares her family’s experiences with her father’s dementia to illustrate the gap in dementia care.

González-Portillo’s father experienced symptoms for more than 20 years, living with attention difficulties, impairments to his problem-solving, and hallucinations. Yet, despite receiving quality medical care for his diabetes and congestive heart failure, González-Portillo’s father never received treatment for his dementia symptoms.

The lived experiences of González-Portillo and many others highlight the impact these disparities have on people living with FTD. Like González-Portillo, advocate and care partner Aisha Adkins, MPA, CNP, emphasized in a 2021 Washington Post artikel how the gap in dementia care created significant obstacles to diagnosis for her mother, a Black woman, which required Adkins to advocate on her behalf for the answers they needed.

While getting a dementia diagnosis is difficult, especially for lesser-known diseases like FTD, González-Portillo and Adkins’ experiences underscore the steeper challenges faced by diverse groups compared to whites.  According to a research review cited by González-Portillo, there are considerable disparities in access to diagnosis and dementia care. Among other findings, the report highlighted that:

• People from diverse groups received less optimal care than whites and experienced additional delays in diagnosis. In one study, it took Black/African Americans 11% longer and Latinos 40% longer to receive a diagnosis.
• Diverse groups had a lower rate of prescription for anti-dementia medications.
• Black/African Americans and Latinos were less likely to be referred for neuropsychological testing.

One of the ways disparities in dementia care can be addressed would be to include greater racial and ethnic representation when designing FTD research, suggests a 2023 research paper. Other ways they propose for eliminating disparities include developing diagnostic and monitoring tools customized for different ethnic and social groups, creating culturally tailored public awareness campaigns, and providing increased education for health care professionals.

For González-Portillo, the gap in dementia care left her family without answers about what was happening to her father, and it put an intense strain on her family. “Without knowing that her husband of 62 years lacked the cognitive capacity to understand his behavior,” wrote Gonzalez-Portillo, “Mom would say, ‘Dad has no sympathy for how I feel … his words hurt me.’ 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.”

Are you concerned about getting proper FTD care or a diagnosis? AFTDs hjælpelinje is here to answer your FTD questions and support you on your journey; contact the HelpLine at 1-866-507-7222 eller info@theaftd.org.