Taking care of an ailing parent can take a toll on the child caregiver, though it is not often noticed, at least by government agencies, insurers and researchers looking into home health care.
But Florence “Flo” Weierbach, assistant professor in East Tennessee State University’s College of Nursing, is looking into the physical health of caregivers and is seeking them for a study.
“I take the stance that if we can keep the caregiver healthy, we can keep mom and dad in the home longer,” Weierbach said in a recent interview.
Weierbach has been a nurse for 30 years. The majority of her clinical practice has been spent doing Medicare certified home health, thus she has spent a lot of time with elderly patients and their families.
While working on her nursing Ph.D. dissertation she began investigating how the community supports patients coming out of the hospital.
Out of that research she discovered the biggest resource was the family and the family caregiver.
Anecdotal, though not concrete, evidence suggests 40 percent of caregivers will die before their care recipient, Weierbach said. This number is not firm because it is hard to find caregivers.
After her dissertation she went to Nebraska to do a post-doctoral fellowship for a year. Nebraska offered access to rural patients. She said 75 percent of Nebraska is considered rural. In fact, some of the state is considered frontier because it is so sparsely populated.
While there she investigated what it means to be a caregiver and to live in a rural setting. Doing this she found not much literature existed on the overall health of caregivers.
“There’s a lot about stress, there’s a lot about what their needs are and psychological stress but not overall physical health and not about what do they do to keep themselves healthy,” Weierbach said.
So with that in mind Weierbach wrote a grant for a study on what she termed the determinance of health for caregivers.
She has identified four things she thinks contributes to caregivers’ health. One is attitudes and beliefs. This ties into why children or friends provide care to elderly parents. Cultural values often play into this first factor.
Second is tasks. This could be bathing, running errands, cleaning, bill paying, meal preparation or anything the person needing care cannot do for themselves.
Third is the needs of the caregivers. Needs are related to tasks but more in the sense of what needs the caregiver cannot fulfill. For instance, some caregivers may be unable to mow the lawn or drive, which cuts down on the needs they can meet for the person for whom they are caring.
The fourth area is health promotion activities. This would be what the caregiver is doing to promote his or her own health.
“You know, do they do the (health) screenings? Do they have a spiritual life? Do they get out once a week to go have a manicure because that’s important to them? Or is the only time they get out when they have someone to take care of their mom and it’s only when they get to go to the doctor?” Weierbach asked.
So she wrote the grant to do such a study and submitted it to the American Nurses Foundation. She began work at ETSU and then received funding for her study. Since then she has been funded internally by ETSU to continue her work.
She began recruiting people for the study in December 2009. Her first person enrolled in February 2010. There are 37 people enrolled now but she needs 150 respondents for a good study.
She said caregivers are largely “hidden,” meaning they are not very visible and no real documentation exists regarding who is providing informal care for a patient.
“So it’s a huge challenge,” she said of finding enough respondents, though they are out there.
“I cannot tell you the number of people who have said to me, ‘Let me tell you about when I was caregiving,” Weierbach said. “I need people that are currently taking care of their loved ones at home, with the requirement being that the care recipient be over 55 and that the person providing the care is considered an adult and either lives with them or visits them five times a week.”
People in assisted living or nursing homes do not qualify for this particular study, though that may be part of a future study by Weierbach.
She said the study is important because nursing home beds and assisted living facilities are at a premium due to an aging Baby Boomer population. And care in those facilities is expensive and oftentimes insurers have limitations on who can be admitted.
“So it creates a vicious cycle and if we want to keep people healthy, and people are living with morbidities longer, it becomes even more important that we look at what do they need at home so they can be as healthy as possible and stay at home as long as possible,” Weierbach said.
For more information or to enroll in the study, call Weierbach at 439-4588 or 1-866-297-8188, or email Weierbach@etsu.edu.