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Efforts underway to address underrepresented populations in dementia research

dementia Latin community
Posted at 12:49 PM, Nov 29, 2022

Lisette Carbajal adored her father, Jose. She says growing up, he was a very active, loving father. However, when she became a teenager, their relationship changed.

“It turned from him caring for me and me caring for him,” Carbajal recalled.

She says her father was diagnosed with Alzheimer’s disease while she was in college, but his symptoms started years before that. She says the signs were pretty evident, but they didn’t take any action until the disease has progressed significantly.

The Alzheimer’s Association reports more than half of Hispanic Americans believe that significant memory loss is a normal part of aging. Language barriers can also delay diagnosis and care. The need for more Spanish-speaking health care experts in dementia care is about more than communication.

“If we test somebody in their non-dominant language, they are going to score a lot worse and we’re going to be attributing that to the wrong cause,” pointed out Carlos Rodriguez, a neuropsychologist with Spectrum Health.

Hispanics are also one and a half times more likely than white people to have dementia. A third told the Alzheimer’s Association they’ve experienced discrimination while trying to get health care.

To strengthen culturally competent dementia care, the Alzheimer’s Association has partnered with hundreds of local and national organizations with roots in the Hispanic community. There’s also federal legislation proposed to increase representation in dementia research.

The ENACT (Equity in Neuroscience and Alzheimer’s Clinical Trial) Act would provide money to build trust among minority communities by expanding education and outreach. It also aims to increase diversity in health care staff. Additionally, it would add more trials and Alzheimer’s disease research centers in areas where underrepresented communities live.