Over the past several months, the National Hispanic Council on Aging (NHCOA) has conducted focus groups to learn about what Hispanic older adults and caregivers know about Alzheimer’s disease (AD). We found that people have a wide variety of beliefs about what causes the condition and how to prevent it. We also heard the insights of caregivers for people with AD. While there is no known cure or prevention measure for AD, caregivers can pass on advice and teach other caregivers how to cope with the stress of providing care.
“I would have her tested to be able to help her better, and have a better life for me and all of those who live at home.”
“The doctor told me that she didn’t have Alzheimer’s-she said, who was I to tell her that? After examining her, the doctor admitted that she had early signs of Alzheimer’s.”
“For those of us who love our family members, I believe we have to give them a hand, take them to a doctor, have tests done-because in its early stages, maybe life is better for those who take care of them.”
During the focus groups, caregivers stressed the importance of taking their loved ones to a doctor and insisting on a having a screening for AD. Surveys show that AD is consistently mentioned as one of the most feared diseases, but early detection and treatment sets older adults on a path to managing the condition before it becomes overwhelming.
“…when someone lives 24/7 with a sick person, you get tired. And from what I’ve heard, you have to look for family support, make the patient’s life better.”
“It causes a lot of stress, exhaustion. And this is true because it reduces the capability to follow someone. In my case I work, but at the same time I have to take care of her.”
“I think it would be good if they gave us a family training, because, in my case, this training they’ve given has been pretty useful to me.”
Support and training for caregivers is also important. While people with AD may take medication to slow the progress of the condition, many still require constant supervision. This means that teaching caregivers strategies for coping with stress and the demands of caring for a loved one are essential. As one caregiver stated, it is important to train entire families about how to care for a loved one with AD.
“In my case, the relationship between my father and the doctor is a good one. She is gentle and relaxed and she understands Spanish, and that has helped my father to talk.”
“One doesn’t even know where to go, here in the Valley. How can we ask for help? How can we ask for suggestions about this? Because there are none. There’s no support service.”
Having a doctor that speaks Spanish and access to culturally and linguistically appropriate services are especially important for Hispanic caregivers. Caregivers stressed that it is very important for people with AD to have a doctor that they like and can communicate effectively with. In addition to following treatments from a doctor, it is also helpful for caregivers to have a place to turn for help and information that is in their own language.
As the population of diverse older adults increases, so too will the number of diverse elders with AD. Today’s caregivers provide valuable insight on how to best care for a loved one and how to cope with stress it can create. Support for families and caregivers and cultural and linguistic competence among health care and service providers will be vital in ensuring that diverse elders are able to manage AD as well as possible.
NHCOA will host a Capitol Hill Briefing on Tuesday, May 7, in Room 122 of the Cannon House of Representatives OfficeBuilding in Washington, DC. We would be thrilled for you to attend. For more information, please email Jason at firstname.lastname@example.org.