Caregiver Support May Reduce Psychological Distress

Direct caregiver support was found to be more beneficial than providing patient care support

20 june 2011-- The psychological distress of caring for a friend or relative with a terminal disease may be reduced if informal caregivers receive direct support, although the quality of evidence is low, according to a review published in the June issue of the Cochrane Database of Systematic Reviews.

Bridget Candy, from the Royal Free & University College Medical School in London, and colleagues reviewed available literature until 2010 to investigate whether supportive interventions, either directly or through patient care, improved the psychological and physical health of informal caregivers of patients with a terminal disease. The analysis included 11 randomized controlled trials with 1,836 caregiver participants. Adverse effects were compared between participants who received intervention and those who did not.

The investigators found that interventions that directly supported the caregiver resulted in a significant reduction of short-term psychological distress with marginal improvements in coping skills and quality of life, but the quality of evidence was low. Only one study assessed physical outcomes and found no difference in sleep improvement. Although no study measured health service use or adverse outcomes, higher levels of family conflict were identified in a subgroup analysis from one study. Patient support did not significantly reduce caregivers' psychological distress, and its effect on caregivers' ability to cope, quality of life, service use, or adverse outcomes could not be assessed. Based on one study there was no difference in caregiver physical health when the patient received or did not receive additional care.

"These findings suggest that practitioners should inquire about the concerns of caregivers and should consider that they may benefit from additional support," the authors write.

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Caring For An Elderly, Sick Spouse Sometimes Has Positive Elements

27 june 2010--Although long-term care of sick or disabled loved ones is widely recognized as a threat to the caregiver's health and quality of life, a new study led by University at Buffalo psychologist Michael Poulin, PhD, finds that in some contexts, helping valued loved ones may promote the well being of helpers.

"Does a Helping Hand Mean a Heavy Heart?," published in the journal Psychology and Aging (2010, Vol. 25., No. 1), reports on a study by Poulin and five co-authors from the University of Michigan Department of Internal Medicine, which closely analyzed helping behavior and well-being among 73 spousal caregivers, many of them elderly.

Poulin, an assistant professor of psychology, says the study team wanted to learn if there were some positive aspects of caregiving, aspects that did not provoke the burnout, high stress and poor health associated with being a caregiver. If so, they wanted to know why these aspects had a positive effect.

They learned that despite the burdensome nature of their role, caregivers experience more positive emotions and fewer negative emotions when they engage in "active care" like feeding, bathing, toileting and otherwise physically caring for the spouse.

"Our data don't tell us exactly what psychological processes are responsible," he says, "but we hypothesize that people may be hardwired so that actively attending to the concrete needs and feelings of others reduces our personal anxiety."

The study found that passive care, on the other hand, which requires the spouse to simply be nearby in case anything should go wrong, provokes negative emotions in the caretaker, and leads to fewer positive emotions.

The study involved 73 subjects (mean age was 71.5 years, age range was 35-89 years) who were providing full-time home care to an ailing spouse. Participants carried Palm Pilots that beeped randomly to signal them to report how much time they had spent actively helping and/or being on call since the last beep, the activities they actually engaged in and their emotional state at that moment.

The researchers found no moderating effects of age on the association between helping and well-being. In other words, helping predicted positive and negative effects similarly for adults of all ages. One variable that did affect outcome was the level of perceived interdependence with the spouse experienced by the caregiver -- that is, the extent to which caregivers viewed themselves as sharing a mutually beneficial relationship with their spouse.

"For interdependent couples, the positive effects of active care were particularly strong," Poulin says, adding that this outcome supports the prediction that "individuals should derive the greatest satisfaction out of helping those with whom they perceive a shared physical or emotional fate."

Poulin says study findings have broad implications for research on caregiving and for research on helping behavior more generally, especially in the aging context.

"Overall," he says, "we wouldn't say that caring for an ailing loved one is going to be good for you or healthy for you, but certain activities may be beneficial, especially in high-quality relationships."

Researchers and social scientists want government or other agencies to provide respite for caregivers, which would be a good thing, Poulin says, "but as this study demonstrates, it is extremely important that caretakers receive the right kind of relief at the right time -- perhaps less time off from active care duties, and more time off from the onerous task of passively monitoring an ailing loved one."

Source:
Patricia Donovan
University at Buffalo

Family Caregivers Share Experiences of Dying Patients

14 jun 2010-- People who are taking care of a family member with lung cancer need support for the entire time that their loved one is terminally ill because they encounter tremendous stress during the dying process, a new study has found.

In many cases, the caregivers suffered from fatigue and felt as if they were also sick. The caregivers, "like patients, often felt they were on an emotional rollercoaster, experiencing peaks and troughs at key times of stress and uncertainty in the cancer trajectory," according to the report published online June 10 in BMJ.

In the study, Scott A. Murray, of the University of Edinburgh, and colleagues interviewed 19 patients with lung cancer and 19 family caregivers every three months for a one-year period, or until the patient died. While the caregivers were generally in better health than the patients, their ability to provide care was diminished when they encountered their own health problems, the investigators noted in a BMJ news release about the study.

Caregivers need support just like the people they're assisting at the four stages considered most stressful for terminally ill cancer patients: when they're diagnosed, when they're at home recovering from their initial treatment, when the cancer recurs, and when death is near, "not just in the terminal phase and during bereavement, as currently tends to be the case," the study authors concluded.

Caregivers may be empowered by knowing that "it is common to feel stressed and in need of support at certain times," Murray's team wrote.

More information

The U.S. National Cancer Institute has tips for caregiver

Study Finds One Third Of American Adults Serves As A Caregiver

13 dec 2009--"A new study says almost one out of three adults in the U.S. currently serves as a caregiver," NPR reports. "The time and energy they put into caregiving becomes like an unpaid job. On average, they spend about 19 hours a week providing care, doing everything from bathing and dressing an elderly parent or loved one to balancing a checkbook or doing household chores."

The survey was sponsored by AARP and the National Alliance for Caregiving, with funding from the MetLife Foundation. Many results "are similar to those from earlier versions in 2004 and 1999. Two-thirds of caregivers are women. The average age is about 48. Almost all -- 86 percent -- care for a relative. Most often, 36 percent of the time, it's for a parent. On average, caregivers have been providing care for 4.6 years, and three in ten report doing so for five years or more" (Shapiro, 12/8).

This information was reprinted from kaiserhealthnews.org with kind permission from the Henry J. Kaiser Family Foundation. You can view the entire Kaiser Daily Health Policy Report, search the archives and sign up for email delivery at kaiserhealthnews.org.

Close caregiver relationship may slow Alzheimer's decline

Study believed first to document potential impact of emotional closeness on course of disease

23 july 2009--A study led by Johns Hopkins and Utah State University researchers suggests that a particularly close relationship with caregivers may give people with Alzheimer's disease a marked edge over those without one in retaining mind and brain function over time. The beneficial effect of emotional intimacy that the researchers saw among participants was on par with some drugs used to treat the disease.

A report on the study, believed to be the first to show that the patient-caregiver relationship may directly influence progression of Alzheimer's disease, is published in the September 2009 The Journals of Gerontology Series B: Psychological Sciences and Social Sciences and currently available online.

"We've shown that the benefits of having a close caregiver, especially a spouse, may mean the difference between someone with AD staying at home or going to a nursing facility," says Constantine Lyketsos, M.D., M.H.S., the Elizabeth Plank Althouse Professor in Alzheimer's Disease Research and director of the Johns Hopkins Memory and Alzheimer's Treatment Center.

Lyketsos cautions that it remains unclear how or why this benefit was evident in the study, since the results may be due to milder forms of Alzheimer's disease among those who reported close relationships. "A close relationship might prompt caregivers to deliver more attentive treatment, but it might be the other way around, with a milder illness helping caregivers stay close," Lyketsos says. "Our next study is designed to detangle what's going on."

Researchers have long been interested in the relationships between caregivers and Alzheimer's disease patients, with many studies focusing on the well-being of caregivers. However, little was known about the converse relationship—how caregivers affect the well-being of people with Alzheimer's disease.

To find out, Lyketsos and colleagues at Johns Hopkins, Utah State, University of Washington, Duke University and Boston University examined 167 pairs of caregivers and Alzheimer's patients. The pairs were recruited from the Cache County (Utah) Dementia Progression Study, which has tracked hundreds of people with Alzheimer's and other types of dementia since 1994. All of the study participants live in Cache County, whose residents topped the longevity scale in the 1990 United States census.

Starting in 2002, the researchers met with patient-caregiver pairs in their homes every six months for periods up to four years. At each meeting, the patients underwent a battery of tests to assess physical, cognitive, functional and behavioral health. The researchers also interviewed the caregivers — spouses, adult children or adult children-in-law — about the caregiving environment and gave them a survey to assess how close their relationships were with the patients. The survey asked caregivers to rate their level of agreement or disagreement with six statements, such as "My relationship with the care recipient is close"; "The care recipient makes me feel like a special person"; and "The care recipient and I can always discuss things together."

At the outset of the study, all patients scored similarly on cognitive and functional tests. However, as time progressed, the researchers found marked differences between patients whose caregivers had scored their relationships as close or more distant on the surveys. Patients with whose caregivers felt particularly close to them retained more of their cognitive function over the course of the study, losing less than half as many points on average by the end of the study on a common cognitive test called the Mini-Mental State Exam (MMSE), compared to patients with more distant caregivers. Patients with close caregivers also scored better on a functional test called the Clinical Dementia Rating, remaining significantly closer to baseline over time compared to those with more distant caregivers.

The "closeness effect" was heightened for pairs in which the caregiver was a spouse, as opposed to an adult child or in-law. Patients with close spouses declined the slowest overall, with scores on the MMSE showing changes over time similar to patients participating in recent clinical trials for FDA-approved Alzheimer's drugs called acetylcholinesterase inhibitors.

"We've shown that the benefits of having a close caregiver, especially a spouse, may be substantial. The difference in cognitive and functional decline over time between close and not-as-close pairs can mean the difference between staying at home or going to a nursing facility," says Lyketsos.

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The study was funded by grants from the National Institute on Aging, one of the National Institutes of Health.

When the Caregiver Becomes the Patient

22 nov 2008-- The stress of providing care for a loved one with Alzheimer's results in 25 percent of family caregivers having at least one emergency room or hospital visit every six months, says an Indiana University study.

It's long been recognized that family care of an Alzheimer's patient is difficult, but the Indiana University researchers said their study is the first to actually measure the stress and examine how it affects the physical and mental health of caregivers.

The study included 153 Alzheimer's patients and their family caregivers, for a total of 366 people. Forty-four percent of the caregivers were spouses, and 70 percent lived with their Alzheimer's-afflicted loved one. The average age of the caregivers was 61 years.

Age, education and relationship to the patient didn't affect caregivers' use of emergency room/hospital services, the researchers found. The behavior and functioning of the patient, not their cognitive disability, were the major factors that determined whether a caregiver went to the emergency room/hospital.

The study was published in the November issue of the Journal of General Internal Medicine.

"Our findings opened our minds to the fact that society needs to expand the definition of patient to include both the person with Alzheimer's dementia and that individual's family caregiver," study corresponding author Dr. Malaz Boustani, an assistant professor of medicine, said in an Indiana University new release.

"For American society to respond to the growing epidemic of Alzheimer's disease, the health care system needs to re-think the definition of patient. These findings alert health-care delivery planners that they need to restructure the health care system to accommodate our new inclusive definition of patient," said Boustani, who directs the Healthy Aging Brain Center.

About four million older adults in the United States have Alzheimer's disease, and three million of them live in the community, often under the care of family members. By 2050, it's estimated there will be 18.5 million people with Alzheimer's in the U.S.

"While we've long known that Alzheimer's is a devastating disease to the patient, this study offers a look at how it also impacts the caregiver's health. If we don't offer help and support to the caregiver too, the stress of caring for someone with dementia can be overwhelming, both mentally and physically," Dr. Cathy C. Schubert, an assistant professor of clinical medicine in the IU School of Medicine, said in the news release.

Caring for the caregiver: Redefining the definition of patient

IU study finds 25 percent of family caregivers of AD patients go to ER Or are hospitalized

INDIANAPOLIS, 13 nov 2008 – One quarter of all family caregivers of Alzheimer's disease patients succumb to the stress of providing care to a loved one and become hospital patients themselves, according to an Indiana University study published in the November 2008 issue of the Journal of General Internal Medicine.

Researchers from the Indiana University School of Medicine, the Regenstrief Institute and the Indiana University Center for Aging Research report in a new study that a quarter of family caregivers of Alzheimer's dementia patients had at least one emergency room visit or hospitalization every six months.

While it has long been anecdotally recognized that caring for a family member with Alzheimer's disease is stressful, this work is the first to measure just how stressful providing care is and to examine the impact of this stress on both the physical and mental health of the family caregiver.

The study found that the behavior and functioning of the individual with Alzheimer's dementia, rather than cognitive ability, were the major factors determining whether the caregiver went to the emergency room or was hospitalized.

"Our findings opened our minds to the fact that society needs to expand the definition of patient to include both the person with Alzheimer's dementia and that individual's family caregiver," said Malaz Boustani, M.D., corresponding author. Dr. Boustani is assistant professor of medicine and a Regenstrief Institute research scientist.

The researchers looked at 153 individuals with Alzheimer's disease and their family caregivers, a total of 366 people. Forty-four percent of the caregivers were spouses. Seventy percent of the caregivers resided with their charges.

The average caregiver was 61 years of age. The researchers found that age, education and relationship to the individual with Alzheimer's disease did not impact caregiver use of acute medical services – either emergency room or inpatient facilities.

"While we've long known that Alzheimer's is a devastating disease to the patient, this study offers a look at how it also impacts the caregiver's health. If we don't offer help and support to the caregiver, too, the stress of caring for someone with dementia can be overwhelming, both mentally and physically," said Cathy C. Schubert, M.D., IU School of Medicine assistant professor of clinical medicine.

Approximately four million older adults in the United States have Alzheimer's disease and three million of them live in the community, often cared for by family members. This number is growing rapidly and by 2050 it is estimated that there will be 18.5 million cases of Alzheimer's dementia in the United States.

"For American society to respond to the growing epidemic of Alzheimer's disease, the health-care system needs to rethink the definition of patient. These findings alert health-care delivery planners that they need to restructure the health-care system to accommodate our new inclusive definition of patient," said Dr. Boustani.

Dr. Boustani directs the Healthy Aging Brain Center. Using the findings of this study, the center is leading the nation in expanding the definition of patient to include the individual with Alzheimer's disease and family caregivers and to provide care to both. The Healthy Aging Brain Center is part of the IU Center for Senior Health at Wishard Health Services.

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Dr. Schubert is the medical director of the IU Center for Senior Health at Wishard and Acute Care for Elders at Indiana University Hospital.

Health Tip: Take Care of the Caregiver

(HealthDay News) -- Being a caregiver for an elderly family member or friend can be overwhelming and stressful.
The Alzheimer's Association offers these suggestions to help caregivers handle their responsibilities while alleviating stress:Take advantage of services that can help -- adult day care, visiting nurses and other services can offer a caregiver much-needed breaks. Continue educating yourself on the condition that your loved one has. Learn better ways to care for the patient and understand what to expect. Don't be afraid to ask friends and other family members for help. Reduce stress and take care of your body by eating right, getting exercise and making time for activities that you enjoy. Get legal and financial planning under control, and consult an attorney or legal advisor on what needs to be done. Be proud of what you are doing, rather than feeling guilty about what you can't accomplish.

http://www.alz.org/living_with_alzheimers_coping.asp