Photo Courtesy Lin Jiang
The UTRGV School of Social Work is conducting a survey to evaluate the mental well-being of informal Mexican American caregivers for people who are suffering from Alzheimer’s disease.
“Caregivers are the real heroes,” said Lin (Helen) Jiang, an assistant professor in the School of Social Work and lead researcher on the survey. “With Alzheimer’s disease, the whole process before the end of their lives, it takes years, and in those years, caregivers play a very important role in their life.”
Jiang said the issue is important for the residents of the Rio Grande Valley because research for Mexican American caregivers is limited.
“[Caring for the elderly] is not only Mexican culture, [it] is also Chinese culture,” she said. “When the family member needs us, we are there.”
The need for better research in Mexican American caregivers is only made stronger by the fact that Alzheimer’s disease is a growing concern within the Mexican American community.
The Centers for Disease Control and Prevention (CDC) reports that by 2060, the largest increase in Alzheimer’s disease will be among Latinos.
This is concerning given the common symptoms of Alzheimer’s.
“Basic symptoms, like memory loss, that is the common [symptom]. We all notice that,” Jiang said, while cautioning that this does not tell the whole story. “A lot of people, they don’t realize they had Alzheimer’s until the middle stage.”
Jiang also cautioned against people who believe that memory loss is the primary symptom or the one that should lead somebody to believe that a loved one has Alzheimer’s.
“It’s not like … ‘I get old, so my memory is not as good,’” she said. “It’s sometimes … a behavior change, mood change, mental health change.”
Alzheimer’s is also a progressive disease that tends to cause deterioration within the patient over time.
“Every change … [has] different challenges,” Jiang said.
She was not only referring to the patient, but also caregivers of the patient.
“[Caregivers] need some time to accept the truth that their family member has Alzheimer’s disease and one day they may not recognize them,” Jiang said. “This is a painful process. Also, they need to think about their financial situation. How long is this process? How many treatments [does the patient] need? Who will take care of them?”
These emotional and financial burdens can cause mental issues within the family members who take on the role of caregivers.
“For the caregiver, it is very stressful,” Jiang said. “You have to concentrate on that patient. You have to sacrifice your time, your entertainment, even your job just to focus on one person, 24 hours, seven days; [consider] how lonely they are. As a human being, this is a huge challenge.”
Jiang also said the person who is taking care of the patient will also suffer from the number of complaints.
“If there is a mistake, if the patient is getting worse, everybody will complain,” she said. “[They will say,] ‘Why didn’t you do this? Why didn’t you do that?’”
Jiang added that loneliness is also a concern for caregivers.
“You have to be with [the patient] every second,” she said. “[The patient] might forget to turn off the gas, might forget the keys, might take the medicine three or four times.”
Support for caregivers is important and there are resources available to them.
“It is necessary for [caregivers] to locate the local resources,” Jiang said. “They have support groups, mutual support. [It is] all caregivers, so they all sit and talk, share experience, share difficulties so they can support each other.”
She said she hopes the results of the survey will lead to a stronger understanding of these caregivers and the issues they face in the Rio Grande Valley but, hopefully, other communities as well.
In order to achieve this goal, they will need a large sample size.
“We want to generalize the results of this study to a larger population, so now we only focus on the Mexican American population in other cities and the other areas of the United States,” Jiang said.
The study is asking for 200 to 300 participants.
There have been about 140 responses to the survey, so far, according to Jiang.
“Being a caregiver is a long-term job,” she said. “It’s not one day or two days. … The preparation, mentally, physically, financially, that’s very important.”
