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URMC Seeks to Diversify Study of Dementia Caregivers

Carol Elizabeth Owens

Older African Americans and Latinos are more likely than Whites to get a diagnosis of Alzheimer’s disease, which may put a higher burden of care on their family.

Attending to a person with dementia can be all-consuming, leaving the spouse or adult child with little time and less energy to care for their own health and well-being. While much research has focused on the person with the disease, older family members providing care now are getting some attention.

The University of Rochester Medical Center in January received a $3.6 million grant from the National Institutes of Health to study social connectedness and the overall health of older adults caring for a loved one with dementia.

The Social Ties and Aging Research (STAR) Center is a joint initiative of the medical center’s Department of Psychiatry and the UR School of Nursing.

Maria Quiñones-Cordero, who holds a clinical faculty position at UR School of Nursing, said the STAR Center plans to embrace diversity. The center plans to develop work groups that will help researchers work with community agencies to recruit minorities.

The Rev. Phyllis Jackson knows personally and professionally what it’s like to care for a loved one with dementia.

“One of the fastest growing communities that have problems with Alzheimer’s and dementia are Black people,” said Jackson, a registered nurse and community wellness project manager at Common Ground Health. “We know from the research that social connectedness plays an important part in people’s health.”

The Rev. Phyllis Jackson, R.N. Provided by Common Ground Health

Jackson also leads the Interdenominational Health Ministry Coalition. Her work puts her in contact with people in marginalized communities and communities of color who are aging and the individuals who have dementia and their caregivers. She questioned the extent to which the STAR Center will include meaningful research in Rochester’s African American and Latino communities.

“We know there are not many researchers of color,” she said, adding that the lack of diversity in research is not limited to URMC.

The STAR Center has been funded to do pilot projects, but Jackson said, “Are they going to select ideas for projects from people of color? Are these projects just going to be about the same old White people who live in the suburbs and have a certain socioeconomic level? Is that what it’s going to be? Because historically they have not included us. That is my concern.”

Maria Quiñones-Cordero, University of Rochester School of Nursing. Provided by URMC

Quiñones-Cordero said that URMC wants to attend health fair, get involved at senior centers and work with the African American and Latino health coalitions, which are housed at Common Ground Health. She said the center may advertise in media that focus on minority communities. (Editor’s Note: Quiñones-Cordero specifically mentioned Minority Reporter and LaVoz.)

Jackson said there needs to a focus on inclusion. “We need to look at culture and religion; we need to look at faith communities. We cannot do the research inquiries according to White people’s standards. Historically, they deal with communities of color in a sort of dismissive type of way — in an afterthought type of way. We should hold them accountable to address the needs of our marginalized communities and community of color.”

Caroline Silva, senior instructor in the Department of Psychiatry, said there are differences in social isolation based on race, but some of that is accounted for by environmental factors. “For people who live in high population density areas, that tends to be associated with greater social isolation. Living in poor neighborhoods increases social isolation and reduces access to social resources. Also, race and ethnicity are often associated with different levels of social economic status.”

Caroline Silva, Department of Psychiatry, University of Rochester Medical Center. Provided by URMC

She said that compared to non-Hispanic Whites, African Americans have some protective factors. “They tend to live with someone else, live with their kids a little longer and they have more contact with religious congregations which actually tends to increase social connection. “I think the takeaway is that differences in social isolation and loneliness by race is not a clear story, because there are certain things that increase risk, for example, living in poor neighborhoods, but there are also certain things that are more protective that I think certain cultures differ on.”

Silva, who is Latina, said that one pilot study seeks to include Spanish-speaking individuals as well as English speaking individuals. “Research in underrepresented populations is very important – that’s what leads to development of services and access to resources that we didn’t have before. … As someone who is a part of the community, I encourage individuals to get involved because that’s the best way we can find out what is needed and what works.”

Jackson applauded the grant for the STAR Center and said that research into social connectedness needs to address all caregivers and all people who are aging. “I am not convinced that it will work that way for people of color, for marginalized populations.”