More than 5 million Americans have Alzheimer’s disease in the United States. But they aren’t the only ones affected by the illness.
According to the Alzheimer’s Association, more than 16 million people in the United States provide unpaid care for those – often loved ones – with Alzheimer’s disease. Often, the stress placed on caregivers is overlooked.
“The caregivers are not so focused on in the media,” said Dr. Carla Thompson, educational research and administration professor at the University of West Florida and director of the Community Outreach, Research and Learning Center at the University. “Research gets more attention than caregivers because everyone wants to find a cure for the disease, and I can see why.”
Thompson understands the caregiver perspective well. Her mother suffered from the disease, and Thompson was her mother’s primary caregiver for 18 years. She has served on the Alzheimer’s board of Covenant Care for the past 12 years.
In 2018, Thompson and two colleagues published an article, “Exploring stress, coping, and decision-making considerations of Alzheimer’s family caregivers,” that looked at the issues that caregivers face. Their findings identified three areas that caregivers struggled with: psychological stress, physical symptoms, and spiritual
distress. These negative effects of being a caregiver can manifest in many ways.
“You’re tired all the time. The fact that it’s a disease of older people means that oftentimes the ‘empty nest’ syndrome is taken over again,” Thompson said. “It can also take your (the caregiver’s) retirement money.”
Those tasked with caring for a loved one are often not trained in any way to deal with these stresses.
“Caregivers are self-designated. Most of the time, they really want to do that role,” Thompson said. “It’s not something that you can just put anyone into.”
While help is available for caregivers, Thompson believes that often taking the time to seek out resources is difficult.
“Caregivers have many options for support groups,” she said. “The problem, I think, is that most caregivers are too busy being a caregiver to go to a support group.”
Caregivers are also less likely to seek help because they know that time with their loved ones is not guaranteed.
“I think they know (caregivers) how limited the time that’s left with the person can be,” Thompson said.
Thompson believes that much more research is needed to understand what caregivers are going through in their journeys. At the moment, there is no concerted effort to look into that topic.
“I don’t think we have any quality research yet,” she said. “I think most caregiving concerns are one-on-one issues and treated by – if they go for help – a support group or from an organization.”
As the baby boom generation ages, the people affected by Alzheimer’s will continue to rise. Some estimates place those with the disease at 14 million by 2050. The caregiver population is also going to grow exponentially.
Thompson believes the best available option to caregivers is to take time for themselves.
“The biggest coping mechanism is respite care,” she said. “Respite care really helps the person get back to their real life and rejuvenate and take care of other things they need to do. It also gives them a renewed spirit to return to the person with Alzheimer’s disease.”
While caregiving can be a burden, Thompson said she tried to find a positive from the experience and offered advice for those who may take on the role.
“Be sure that you are looking at the loved one, learn from them what their needs are and realize that this is a process that is unending because you don’t know when the end will be,” she said. “But it also is an enlightening experience because you will learn more about that individual than you ever would have believed.”