Bringing the Aging in America Conference to San Francisco, just a train ride from Silicon Valley, was a deliberate move to enhance the focus on technology this year, which led to a handful of tech experts talking about predictive analytics, or data that can tell the future.
But what if you don’t have enough data? Panelists at the 2018 Diversity Summit, titled “A Focus on Diverse Caregivers,” pointed out that there are some within minority communities who eschew the very term caregiver and others who won’t admit to ailments for fear of cultural stigma.
“If you don’t have the research, then you don’t have the policy,” said Mona Negm, president of the American Muslim Senior Society.
Negm, who was part of the panel focusing on inclusive solutions along with Yanira Cruz and Sadiya Abjani, said one of the latest efforts to engage the Islamic community with healthy caregiving practices and research has been to train imams, who as community leaders then serve as ambassadors in those communities.
Abjani, a training specialist with SAGE, said it likewise can be difficult to gain insights into the habits and health of the nation’s estimated three million older adults who identify as LGBTQ+, especially with so many who may not be open to sharing details of their lives after decades of discrimination.
In the past, Abjani said many of the identities of today’s older LGBTQ+ adults were classified as illegal, never mind fear of discrimination or excommunication from their community.
Although we may strive for a world where everyone is treated equally, “the world hasn’t affected us all equally,” Abjani said.
Cruz, president of the National Hispanic Council on Aging, said the Latinx population battles an additional cultural stigma over dementia and Alzheimer’s in addition to “a lack of competency and language sensitivity in the medical field” that makes everything from diagnoses to data collection more difficult.
“It’s a story we heard over and over again,” Cruz said, explaining that Latinx family caregivers she spoke with across the country struggled with admitting, either to themselves or others, that a loved one has cognitive issues, Alzheimer’s or dementia.
Cruz added that she has begun an ongoing national survey of Latinx caregivers, and while her sample size is enough for her to share some data –the average for a Latinx caregiver is 54 – she is still looking for more caregivers within the Hispanic community to participate.
