Caring for the Caregivers
Studying health effects on providers. Surprise: they’re not all bad.
Alzheimer’s disease is an epidemic. It attacks the brain’s nerve cells, causing memory loss, behavioral changes, confusion, and deterioration of language skills. It affects more than 5 million Americans 65 and older, and that is expected to increase to 13.8 million by 2050 unless science finds a treatment. Alzheimer’s and other forms of dementia are projected to cost the nation $236 billion this year and the figure could reach $1 trillion by 2050, according to the Alzheimer’s Association.
At Boston University, dozens of researchers are looking for tests that could lead to early diagnosis and interventions to prevent or delay the disease, running clinical trials that may result in treatments and an eventual cure, working to understand genetic risk factors, and studying Alzheimer’s impact on caregivers.
The Boston University Alzheimer’s Disease Center, established in 1996, is one of 31 such centers nationwide funded by the National Institutes of Health and dedicated to conducting research into the disease, enhancing clinical care, and providing education.
In this special report, BU Today examines the work of five BU researchers.
On a pleasant spring day, 87-year-old Ephraim Gitelman sits in his Needham home, his walker nearby, talking about his late wife, Shirley. She was the love of his life, a gregarious and talented person, one in a billion. “I was so lucky,” he says.
But in the early 2000s, after more than 40 years of marriage, Alzheimer’s disease began stealing her memory and slowly turned her into a different person. She lashed out at him verbally and physically and lost the ability to perform simple tasks. Gitelman became her primary caregiver, cooking and cleaning, laying out her clothes, and helping with personal hygiene, until just before complications of the disease ended her life in 2011, at age 78.
The electrical engineer and former computer-industry executive tried a few day care and companion programs for his wife, but none worked for her—one time she wouldn’t even get out of the car. Even though caring for her himself could be difficult, it felt right, and he never worried that his own health might be affected.
“I did not get exhausted, although it did cause me an unbelievable amount of angst,” he says. “It never stopped me from doing what had to be done for her.”
It’s generally assumed that caring for a loved one with a life-changing or fatal disease is so stressful, both physically and emotionally, that it inevitably takes a toll on the caregiver’s health, but research by Lisa Fredman, a School of Public Health professor of epidemiology, who studies the health of caregivers, challenges that assumption. In fact, Fredman has found that some caregivers may actually see physical and cognitive advantages and that they may live longer than noncaregivers, a finding that surprised her when it first showed up a decade ago.
“At first I thought there was a problem with the data,” she recalls. “I actually said, ‘Are you sure you coded this correctly?’”
Alzheimer’s is a progressive, irreversible brain disorder that slowly destroys memory and thinking skills, and eventually, the ability to carry out the simplest tasks. Understanding its impact on caregivers is crucial. As the number of people diagnosed with the disease continues to increase, so too do the number of people caring for them.
In 2015 alone, more than 15 million caregivers provided an estimated 18.1 billion hours of unpaid care to people with Alzheimer’s, according to the Alzheimer’s Association. More than 60 percent of caregivers were women. Nearly 60 percent of Alzheimer’s and dementia caregivers rate the emotional stress involved as high or very high and about 40 percent of them are said to suffer from depression. Some 74 percent report they are “somewhat” to “very” concerned about maintaining their own health.
Last fall, the National Institute on Aging (NIA) awarded Fredman a $451,000 grant to interview older people caring for someone with Alzheimer’s or another cognitive disorder about their workload and stress. The two-year study will enroll caregivers in the Boston metropolitan area.
A typical measure of caregiver stress is intensity, measured simply by adding up all the tasks they have to perform. But existing studies have shown, counterintuitively, that caregivers with more tasks actually have lower mortality rates.
Along with colleagues Kate Applebaum, an occupational epidemiologist at the George Washington University Milken Institute School of Public Health, and Lee Strunin, an SPH professor of community health sciences, Fredman hopes to learn what tasks are more stressful and what less stressful and correlate that with health data.
“The idea is to determine which caregiving activities have the typical downsides associated with stress and which may actually benefit caregivers,” she says. It’s a case of looking for the silver lining.
Fredman has spent more than 15 years studying the health of caregivers, drawing most of her subjects from two large-scale studies. Several hundred were chosen from an existing National Institutes of Health study of osteoporotic fractures, and 113, including Gitelman, were older caregivers to someone with Alzheimer’s or Parkinson’s disease recruited for Fredman’s Health Pathways Study. (Each study includes noncaregivers for comparison.)
Her work has shown that while caregivers are significantly more stressed than noncaregivers, they have roughly 20 percent lower mortality, less functional decline or frailty, and less cognitive decline. She has begun to form some theories about what those results might mean.
The burden and the benefits
Who are caregivers? For older people it is most often a spouse—as much as 86 percent of the time in the Health Pathways group. But it can also be a child or a sibling, even a neighbor, which is common in senior living communities. And some caregivers have more than one person to take care of—for example, a spouse and a disabled adult child.
“We have practically every combination,” Fredman says. “We’ve had some really heartbreaking stories.”
Even when a family decides that it’s not safe to keep a relative with Alzheimer’s at home, many caregivers still go to the nursing home every day to help their loved one with eating, grooming, and bathing.
“In the big picture, so much of health care is being taken out of the hospital and out of the nursing home and implemented at home,” says Roth. “We need family members and other kinds of support persons at home to assist and make that care as effective as possible.”
When Fredman tested the study participants’ cognitive function through paper-and-pencil tests of mental processes and verbal memory tests, she found that caregivers “have better recall, they’re going through these executive function tests faster, and they’re scoring better.” She suspects that their cognition may be better because of all the thinking they have to do to navigate the medical system and handle the daily routines of their care recipients. She also found caregivers performing better than noncaregivers on physical measures, like their grip strength and walking speed. Perhaps, she says, the physical efforts required of caregivers mean they function better overall.
Her results are generally backed by other studies, such as one led by David Roth, director of the Johns Hopkins Center on Aging and Health. And her results hold up against “the healthy caregiver hypothesis”—that caregivers are healthier than noncaregivers because to take on the job in the first place, they have to be healthy.
Fredman also measures psychosocial lifestyle variables, such as asking caregivers about their sense of purpose. “I think there are tremendous benefits of caregiving,” she says. “There’s quite a bit of work on volunteering among older adults, where feeling useful, having a purpose in life, and staying active has a positive effect. Our caregivers are much more active than our noncaregivers. They also feel they are doing something very important and helpful to the person they’re caring for. I think there’s a lot of benefit for them from these positive psychological effects.”
Why does the health of caregivers matter?
“In the big picture, so much of health care is being put back in the home—taken out of the hospital and out of the nursing home and implemented at home,” says Roth. “We need family members and other kinds of support persons at home to assist and make that care as effective as possible.” As the population of older adults explodes in the coming decades, he says, it’s the best way “to provide care and keep older adults having a high quality of life.”
The rewards of caregiving
“My mother had been a caregiver to my grandmother for many years in our house, and I don’t think she took care of herself well,” Fredman says. “She ended up dying of a sudden heart attack at age 68, and that’s always kind of been with me.” She and her sister later cared for their father for 13 years as he went downhill from dementia.
She believes her mother—like many other caregivers—developed metabolic syndrome, whose usual symptoms are high triglycerides and high fasting blood sugar, high blood pressure, low good cholesterol, and abdominal obesity. She and her researchers have taken blood and urine samples from caregivers to check for these factors as well as for biologic markers of high stress, such as interleukin 6, a protein in the blood that is strongly correlated with stress.
Fredman also found that some of the caregivers she studied were very stressed because they didn’t have enough support. She says temporary respites from their duties and other interventions would help them deal with the stress.
When her father began to fail, she found an unexpected insight into the rewards of caregiving. “I would definitely not want to repeat that experience ever,” she says. “But I’m pretty sure that he recognized what was going on, although he didn’t quite verbalize it, and there were things he felt it was important to share with me and my sister that I don’t think he would have shared otherwise.”
Every family’s experience is different. Ephraim and Shirley Gitelman married in 1957 and raised three children. But after Shirley had minor surgery in 2002, she began forgetting names. By 2005, she had been diagnosed with Alzheimer’s.
“I did everything I could to help her,” Gitelman says, wiping his eyes, but “she became unmanageable, she started to hit me, she would go downstairs and try to open the front door, and she would scream, ‘Police! Help!’ It was a disaster.”
He says it’s his nature to handle whatever comes along. “In difficult situations, I’ve always managed to just hang on, do what had to be done, and wait it out,” he says. “That’s the way I always was—I’m an implementer.”
Gitelman says it makes sense that the increased activity, both mental and physical, demanded of caregivers would be beneficial. Although he still has what he describes as a Type A mind, he does have chronic lymphocytic leukemia, diagnosed just months after his wife’s death, and back troubles that require him to use a walker, but neither condition does he attribute to his years of caregiving.
For Alzheimer’s caregivers, one of the hardest challenges comes after their loved one dies. Gitelman now lives alone in the couple’s home, although he sees his children and grandchildren often. He says they’d like him to move into senior housing, but he doesn’t see the point.
“My problem is, when I go to sleep at night I’m alone, and when I wake up in the morning I’m alone,” he says matter-of-factly. “That problem does not get solved if I’m in a senior living place.”
November has been designated as National Alzheimer’s Disease Awareness Month.
Read other the stories in our “Unraveling Alzheimer’s Disease” series here.
Unraveling Alzheimer’s Disease
April 27, 2016
Work It Out
April 26, 2016
The Search for a Treatment
April 25, 2016
The results of the trial would seem to be a more accurate insight into a caregivers health if participants were from different regions. Those in metropolitan Boston area seemingly would have access to the same caregiver respite programs, etc. There is a huge difference in available services even county to county.
I also wonder if there hasn’t been the same focus and assumption on caregivers stress as on the impact of poverty on families. We convince many they are “poor” when they did not identify as such prior to the conversation!