Who takes care of the caregiver?

June 20, 2022

A few years after his father was diagnosed with Alzheimer’s disease, Carlos Olivas reached his breaking point. He returned home to Sacramento, California to live with his father and care for him full time.

“Things got really rough between my dad and me, and I sort of lost my mind,” Olivas said.

The ASU CARES study is looking for participants who are caring for a loved one with Alzheimer’s disease or related dementias. Image courtesy of Canva
Download Full Image

Olivas needed some extra help, so he called the Alzheimer’s Association’s 1-800 number to ask for information to help his father. He got that and more. He was finally able to refocus and see how much he needed to take care of himself too. It’s no exaggeration to say that a single phone call changed the lives of Olivas and his father.

“The person I spoke to was like, ‘Well, how are you?’ And that’s when I opened up and found a listening ear that understood my position, and from there I ended up joining a support group,” Olivas said. .

According to the National Alliance for Caregiving and AARP’s 2020 Caregiving in the US study, about one in five Americans are unpaid family caregivers. In case you were wondering, that’s about 53 million people.

The Centers for Disease Control and Prevention calls these caregivers the backbone of long-term home care, noting that while this role can be rewarding, it can also have negative health consequences.

“In general, and particularly for those caring full time for a family member or friend with Alzheimer’s disease, levels of emotional and physical stress and strain on the relationship are very students. No matter how much they love the person they are caring for, it has an extraordinary impact,” said Linda Larkey, faculty member and researcher at Arizona State University’s Edson College of Nursing and Health Innovation.

Larkey is the co-principal investigator, along with Dara James, a postdoctoral researcher, who earned her doctorate in nursing and healthcare innovation, for the ASU CARES study. They are actively recruiting participants 18 years and older who are caring for a family member or friend with Alzheimer’s disease or related dementias for their ongoing research.

“We are looking at the use of practices that potentially help caregivers recharge physically and emotionally within minutes each day, without taking time away from their care,” Larkey said. “Our study is part of a series that has been implemented by Edson College research faculty as we develop dementia prevention, support and caregiver programs.”

Carlos Olivas looks at the camera.  He wears a black shirt with the word caregiver on it and the definition below.

Carlos Olivas. Photo by Roberta Alvarado

As part of his search for resources and support, Olivas came across an earlier college study. When asked why he liked it, he was candid and said there were several reasons, the first being his own health.

“I read a statistic from the Alzheimer’s Association that 67% of caregivers who care for their loved ones die before their loved ones and that scared me,” Olivas said. “My health was already not great, I was overweight, and that compounded by the stress and strain of caregiving, I felt like I was going down this path and needed to change.”

Additionally, Olivas said that as a person of color and a man, being represented in studies like this is important to him so that science “helps other people like me.” He sees research studies as a community resource and a way to give it back to future caregivers.

If current estimates hold, there will soon be a surge in the number of people taking on roles to care for America’s aging population.

“This is a rapidly growing sector of our population, with family members suddenly having to give up most of their lives, to care for a loved one in this setting. It creates a challenge for the well-being, quality of life and relationships of the whole family,” Larkey said.

The practices Olivas picked up while participating in a previous Edson College study have now become habits that have made a big difference in how he spends his day. For example, he started prioritizing self-care and focusing a bit on something other than caregiving. Another habit is to be more present to recognize the stresses and strains they are experiencing and know when to contact their care network for support.

“People need to understand that there is help and support out there, but you have to work on it. I always work on myself to improve my health because being healthy helps me to be a better caregiver,” he said.

To learn more about ASU CARES, email the study team at [email protected]