By Carolyn Bick
NORTHWEST ASIAN WEEKLY
Molly Silvestrini, Research Assistant, IDEA (left) with Dr. Diane Biray Gregorio, Research Scientist, IDEA
One of the reasons why Filipino American researcher Diane Biray Gregorio is so passionate about her work for the University of Washington School of Social Work’s IDEA study is because she owes the fact that she can be an out and proud member of the LGBTQ+ community to the struggle and work of the LGBTQ+ elders who came before her.
Another is that she and her family have gone through the very same obstacles and experiences as many of the people involved in the study –– not only the toll it took on the relative who acted as the caregiver, but also the stigma of talking about mental health and associated diseases that is prevalent in the Asian American and Pacific Islander (AAPI) community.
“My [relative] didn’t really want people to know, he didn’t want [his caregiver] to tell people, even though people could tell that something was changing about him. So she (his caregiver) was really isolated,” Biray Gregorio recalled. “They were retired in the Philippines, at this point. At least here, there’s the Alzheimer’s Association, and there are other support groups. There’s nothing there.”
Enter the IDEA study. IDEA, which stands for Innovations in Dementia Empowerment and Action, and is connected to Aging with Pride, is a free, six-week study program in which a caregiver-care recipient pair is matched with a coach. The coaches are trained to help both the caregiver and the person experiencing memory loss come up with strategies to solve problems that may arise.
“The caregiver, in that situation, feels a tremendous amount of pressure.
And, frequently, the caregiver themselves experiences health challenges, as a result of being a caregiver, because it’s so demanding and stressful,” Biray Gregorio said. “One of the things that happens to people with dementia or Alzheimer’s disease is that they experience behavioral challenges. There could be wandering, there could be mood changes at certain times of the day, there could be different kinds of confused or aggressive behaviors, and that’s really, really difficult for a caregiver to deal with.”
They also teach different communication strategies. Instead of trying to contradict a person experiencing dementia, who might, for instance, believe a deceased relative is coming to visit later, the coaches teach the caregivers to “validate the person’s experience, and redirect them to another object of their attention, as opposed to fighting with them about that, and creating a whole bunch of other behavioral problems,” Biray Gregorio said.
The coach also teaches low-impact exercise, in order to help both the caregiver and the person experiencing memory loss stay strong and mobile.
This helps to prevent injury, improve a person’s mood and brain function, and reduce stress, Biray Gregorio said.
The only requirements to participate in the study are that one of the pair must belong to the LGBTQ+ community. The person with memory loss must be at least 50 or older, and feel that the memory loss is interfering with everyday life.
One of the main factors of this study, Biray Gregorio said, is that they are looking at not only the unique risks facing LGBTQ+ elders, but also the strengths cultivated within that community.
“On the one hand, the unique risks are distinct experiences of trauma or isolation or stigma that LGBTQ+ elder folks experience, but, at the same time, one of the strengths is community — is a real diversity of different ways that people care for each other,” she said. “There’s families of origin, but then there are chosen families, families we create.”
If the pair successfully completes one of the five phone surveys associated with the study, they are given $25, for a total of $125. Biray Gregorio said there is still plenty of room in the program. Currently, there are only 40 pairs involved. The target is 255 pairs.
Biray Gregorio believes the stigma against talking about mental health in the AAPI community makes it difficult for those within the community to ask for help, regardless of whether they are the caregiver or the one receiving care. This only compounds the problem, she said, and highlights the dearth of mental health resources available for communities of color, particularly if they belong to the LGBTQ+ community. Though this is changing for the better, she said, there still needs to be more emphasis on creating culturally appropriate resources and mental health education for LGBTQ+ elders in different communities of color. Communities of color need to talk about this issue, she said.
“People don’t understand that it’s an illness. It’s the change in the functioning of someone’s brain. It’s not because an elder is just trying to be stubborn or rebellious,” Biray Gregorio said. “If we were able to talk about it and understand the illness, and understand how the illness affects our behavior, affects the way we communicate with one another, then I think that would really be helpful, instead of creating difficult dynamics within families.”
C.E. can be reached at editor@nwasianweekly.com.