University Times

Alzheimer Disease Research Center (ADRC) evaluators also are concerned about the health of patients’ caregivers.

“It sometimes surprises me to what extent the other person is willing to sacrifice in order to take care of someone with Alzheimer’s,” ADRC director Oscar Lopez said. “That’s all part of the emotional and financial burden of this disease. People are willing to sacrifice everything, even their own health, to care for an Alzheimer’s patient.”

ADRC co-director William Klunk said, “This is a horrible disease for the caregiver, because it’s so time-intensive and the progression of the disease is so long. We tell caregivers to get every possible scrap of help you can;  killing yourself doesn’t make the family member’s life any better. So be sure to take care of yourself, too.”

Carolyn Rickard, ADRC physician assistant, said, “Caregivers don’t know what their own breaking point is, or how the pressure is affecting their own health. That’s why we have to sometimes push people to use day care or assisted living. This disease is 24/7. I see such a relief for caregivers who have their patient in day care for even one day a week.”

Often caregivers are resistant to such suggestions, she acknowledged.

“I hear so much from families, ‘Well, my father won’t want to go. That’s not him, that’s not his personality.’ But once patients get there, they generally enjoy it. Some participate in activities and some just go and watch, but they enjoy it,” Rickard said.

“I tell people it’s like taking a child to kindergarten. Sometimes you have to be firm. They don’t want to go that first day. They cry,” she said. “We typically have spent our whole life not bossing our parents around, but at some point it’s that whole parent-child reversal that we have to work through.”

For people with dementia, routine is very comforting, Rickard said. “Once you establish the day care as part of the routine, it goes well.”

However, the concept of routine should not be overplayed, she cautioned.

For example, caregivers of patients who refuse to move into smaller, more manageable accommodations should not take no for an answer. “You don’t take routine to an extreme, when legitimate practical concerns are involved or especially when routines compromise their safety,” Rickard said.

The Pittsburgh area is blessed with a high concentration of resources for caregivers, which rural communities often don’t have, Rickard noted. Adult day care programs, in-home nursing care and assisted living facilities can be lifesavers for family caregivers. Often, adult children live at a distance, and providing the proper care for the parents becomes problematic.

“That’s when some caregivers have to say, ‘I’ve got to place mom in assisted living. It’s a safety issue,’” she said.

Caregivers also face psychological difficulties as family members’ health declines. “Watching the change is painful. Mrs. Reagan, referring to President Reagan’s Alzheimer’s, called it the ‘long good-bye.’ A spouse or family member can linger for several years without recognizing you. That takes its toll,” Rickard said.

Klunk said, “The point is as a caregiver you have to prevent wearing down yourself.”

He estimated that half of the people in their 50s have cared for an aging parent or older relative.

Rickard said, “We get a lot of families here where the caregiver is in the sandwich generation — that’s big stress. You’re pulled in so many directions. Whatever type of dementia it is, the family becomes the bad guy. You become the target of the patient’s anger, when they’re losing independence and showing the frustration of their life changing.”

“It’s a tremendous, widespread problem,” Klunk added. “And it’s getting worse as the population ages. I often remind myself that without a cure, many of us now in our 40s and 50s are going to get Alzheimer’s.”

—Peter Hart