Peter Vitaliano, PhD, a professor of psychiatry and psychology at the University of Washington in Seattle, has studied caregivers since 1984. He directs the Stress and Coping Project, a study of spouses of Alzheimer's patients. He was guest editor of the Spring 1997 issue of Annals of Behavioral Medicine (Vol. 9, No. 2) devoted to the effects of stress on caregivers' health. Contact: (206) 543-8397.

Q. Is it possible now to study caregivers' stress in the laboratory?

A. For years, researchers relied on caregivers to report the state of their own health with accuracy. It is only in the last decade that caregivers' physiological markers - that is, immunological, cardiovascular, and metabolic markers - have been compared with those of age- and sex-matched controls. This is necessary because, to use but one example, men caregivers traditionally report few health problems, and women caregivers report a great many. Tests of their blood reveal the opposite to be the case. Male caregivers are in bad shape compared with male controls, while female caregivers are more similar to female controls.6

Only by comparing these objective markers can we get a better picture of how caregivers' health and physiological functioning are being compromised by the stress of caregiving.

Q. Then, can we predict and measure the effects of that stress?

A. To some extent. Some caregivers have vulnerabilities that make them especially susceptible. If you put exposure and vulnerabilities together, it's like adding oil to a fire. We have come up with a model that says distress is a function of exposure times vulnerability divided by resources (D=EV/R). Exposure, in our view, depends upon the nature of the care-receiver's disability and how much care must be provided. Vulnerabilities include the caregiver's demographics, personal disposition, and health problems when caregiving starts. And the resources involve social supports and personal resources - such as income and coping skills - that help the caregiver reduce the effects of any vulnerabilities he or she may have.

Q. So a caregiver's health at the outset is an important factor?

A. Caregivers with health problems may be in real trouble. Their risk factors are higher than those in their non-caregiving counterparts who also have health problems. Blood pressure, for example, increases dramatically in hypertensive caregivers who talk about their spouse for five minutes. That doesn't happen as much with controls who are hypertensive.

In a recent study relating to coronary heart disease, we measured 71 caregiver spouses of Alzheimer's patients and 70 controls for five risk factors known as the metabolic syndrome.

These include blood pressure, obesity, cholesterol and triglycerides, glucose, and insulin. Caregivers who had heart disease were very high in this aggregate number relative to controls who also had coronary heart disease. Interestingly, among the subjects who were free of heart disease, caregivers and non-caregivers rated similarly. This implies that caregivers who are not already vulnerable to physiological disregulation may be at less risk for such problems than those who are.10

It's important to note that these findings are specific to this population and can't be generalized to all caregivers. There's no stressor that comes close to that of taking care of a spouse with Alzheimer's, because not only are you living in a stressful environment, but you've also lost your main source of social support. It's like adding salt to a wound.

Q. Have you found any relationship between caregivers and cancer?

A. People with a history of cancer may be vulnerable to infections or recurrent cancers. We studied Natural Killer Cell (NKC) activity - that is, the activity of white blood cells that kill tumors - in 80 spouse caregivers of Alzheimer's patients, and 85 controls. Some had histories of cancer, and some did not. Caregivers who had cancer histories and high levels of perceived, unrelieved stress had lower levels of NKC activity than did non-caregivers who had cancer histories.11

Q. What are the policy implications of what we know about caregiver stress?

A. Caregivers are hidden victims. Some have told me that they like participating in my research because nobody else listens to them. We should increase our knowledge about their health and health habits, not just about their depression. If we can determine which caregivers are vulnerable to physiological or physical impairment, then we can earmark them for intervention.

This may also have tax code implications. By taking care of a disabled person in their home, caregivers save us incredible amounts of money. Many caregivers lose vocational income and expend their own resources. The longer caregivers remain healthy, the longer they remain independent, lead enjoyable lives, and care for their loved ones.

Interview #2: 'Identify Those at Risk'

Richard Schulz, PhD, a professor of psychiatry at the University of Pittsburgh, serves as principal investigator of the Coordinating Center for REACH (box below), the largest research initiative ever to focus on the health of people who provide care to those with Alzheimer's or related disorders. Dr. Schulz served as a guest editor of the March 1998 special issue of the journal Health Psychology, devoted entirely to caregivers' health concerns. Contact: (412) 624-2311.

Q. Why is caregiver health receiving so much attention now?

A. It has begun to affect a huge number of people. The fact that increasing numbers of persons with chronic illnesses are being cared for at home is a function of the changing nature of healthcare, as well as demographics. The population made up of people age 65 and older continues to grow. Yet for the past decade, the percentage of those who have been institutionalized has remained the same - about 5 percent.

Q. Do many caregivers suffer ill effects?

A. Yes. I was involved in a population-based study that showed that 80 percent of people living with a disabled spouse were providing care to their spouse; 56 percent of those caregivers reported mental or physical strain associated with caregiving. This study was limited to spouses who were caregivers.7 If anything, adult daughters who are caregivers may have higher rates of mental or physical strain because they may have additional competing demands on them, such as employment and child care responsibilities.

In the early stages of disability, there is some evidence that caregivers benefit from what they do. The demands on them are relatively light. They feel good about themselves. But as caregiving extends over time, the nature of its requirements often increases. Physically demanding tasks - helping to bathe someone, for example - become necessary. Round-the-clock vigilance may be called for. This can cause problems for caregivers, as can competing demands from family, work, or other obligations. There also is the negative effect of watching a loved one decline.

Q. How does caregiving harm the caregiver?

A. Early research measured what we call the burden - that is, the stress. Other efforts frequently measured depression and generalized anxiety. There is pretty compelling evidence in the literature that there are negative effects in both of these indicators on caregivers as opposed to other people. The greater the demands, the higher the effects. The latest research has focused on the physical effects of caregiving. Our own work suggests that caregivers engage in behaviors that should, in the long run, have negative health consequences. They are sleep-deprived, they miss physician visits, and they are not engaged in preventive health behaviors that they normally might engage in.

Really interesting work relating to immune function is being done by Peter Vitaliano (interview, page 2) and Janice Kiecolt-Glaser (box, page 2). Their studies conclude that some caregivers have vulnerabilities that put them at risk for infections and deteriorating health. I think it is likely that if you take an individual who is already at risk - someone who, for example, already has heart disease - the stress associated with caregiving can worsen that condition. We need to identify which individuals are at risk. This is a difficult hypothesis to test. You need to isolate a group of individuals who are high-risk, who are already vulnerable with respect to having health problems, and look at the worsening of those problems.

Q. How can we tell which caregivers need help most?

A. Most care-recipients are assessed in primary care facilities. It makes sense to look at the family context at the same time. Some places actually do this now. That helps identify where the major vulnerabilities are. One can apply a quick screen to the family member who is the primary care provider and learn about health-related behaviors. For example, is he or she getting enough sleep? Is he or she eating properly?

Q. Once we identify them, how can we help them?

A. Some interventions have been demonstrated to be effective. I characterize one as the kitchen sink approach. It combines everything you can think of: counseling, maybe some mix of services based on the person's specific needs, education, skills training - all of those things made available to caregivers have been shown to alleviate some of the negative outcomes, in both the caregivers and those who receive the care, even delaying the institutionalization of Alzheimer's patients.4 From a policy point of view, that's important. Institutionalization is a very expensive option. Family caregivers save us billions and billions of dollars that would otherwise have to be spent on caring for patients in institutions.

Q. What kinds of caregiver support services do you see in the future?

A. We have a unique opportunity to apply modern technology to interventions. Computers can serve as an educational resource. We're doing that in a number of different contexts. For example, in a study we're doing on head injury patients, we use computers as a means of delivering information to caregivers who can access a private web page developed especially for them. It has all kinds of resource information about the condition they're facing. Computers also can be used to create support groups. Caregivers are interacting with other members, getting and giving advice over the Internet. You can also deliver counseling services through computers. This is emerging as a whole new way of interfacing with caregivers in the home. This is just the beginning. I think it's exciting.

Alzheimer's Caregivers: The Effects of Stress

Ohio State University researchers Janice Kiecolt-Glaser, PhD, a professor of psychiatry, and her husband Ronald Glaser, PhD, a professor of medical microbiology and immunology, led some of the earliest caregiver physiology studies. Multiple laboratories have since confirmed their findings that the stress of spousal caregiving for Alzheimer's patients adversely affects caregivers.

Depression and anxiety are common. Compared to well-matched non-caregivers, according to the Glasers, caregivers also have:

• Poorer immune function
• More respiratory tract infections
• Poorer response to influenza virus vaccine
• Slower wound healing

- (Contact: 614-292-0033)

Cost of Caring: $47 Billion a Year

Most providers of care for elderly loved ones also work full-time. The conflicting demands place both stress and expenses on caregivers and their employers. Corporations lose an estimated $11.4 billion annually3 from costs associated with:

• Replacing caregiving employees who had to quit their jobs ($4.9 billion).
• Workday interruptions ($3.7 billion)
• Care recipient crises ($1 billion)
• Partial and total absenteeism ($885 million)
• Special demands on supervisors' time ($805 million).

Among caregivers themselves, only 41 percent say they can estimate their out-of-pocket caregiving expenses. They report an average $171 a month, an estimated nationwide expenditure of $1.5 billion a month, or $18 billion a year.(5)

"The number of family caregivers has tripled in the past 10 years, with two-thirds of them in the workforce. The current value of caregiving to society is estimated at $113 to $286 billion a year. We need to pay more attention to their needs by reaching out with information and support, especially through employer programs."

- Gail Hunt
Executive Director, National Alliance for Caregiving
(301) 718-8444

The National Institutes of Health launched a project called REACH in 1995, the first large-scale attempt to identify the most promising home- and community-based programs to support and improve family caregiving, particularly among minority families. The acronym stands for "Resources for Enhancing Alzheimer's Caregiver Health."

Six REACH projects have been funded through the National Institute on Aging and the National Institute of Nursing Research. About 1,300 caregivers will participate nationwide. Outcomes are expected to be available late next year.

Who Cares?

The typical caregiver is a 46-year-old employed woman who spends about 18 hours a week caring for her mother, who lives nearby.

This and other information from a telephone survey5 of 1,509 English-speaking caregivers, the most comprehensive such survey ever, reveals how caregiving in America affects different ethnic groups.

The percentage of caregivers is higher among minority households:

Asian	32 %
African-American	29 %
Hispanic	27 %
White	24 %

Among caregivers overall, 73 percent are women. But among groups, the percentages vary:

African American	77 %
White	74 %
Hispanic	67 %
Asian	52 %

Caregiving may take a few hours a week or nearly all waking hours. Averages per week:

African American	20.6 hrs.
Hispanic	19.8 hrs.
White	17.5 hrs.
Asian	15.1 hrs.

Caregivers report a variety of stresses:

• 55 % have less time for other family members and/or give up vacations, hobbies, or personal activities.
• 15 % have physical or mental health problems.
• 7 % experience financial hardship.

1. Kiecolt-Glaser, J, et al., "Stress and Health in Dementia Caregivers," for a summary of findings, click here.

2. King, AC, et al. (Spring 1997) "Enhancing Physical and Psychological Functioning in Older Family Caregivers: The Role of Regular Physical Activity," Annals of Behavioral Medicine, 91-100.

3. The MetLife Study of Employer Costs for Working Caregivers, (June 1997) p. 7.
Contact: (203) 221-6580

4. Mittelman, MS, et al. (December 1996) "A Family Intervention to Delay Nursing Home Placement of Patients with Alzheimers Disease," JAMA, pp 1725 - 1731.

5. National Alliance for Caregiving, and American Association of Retired Persons (1997) "Family Caregiving in the U.S.: Findings from a National Study."

6. Scanlan, JM, et al., (in press). "CD4 and CD8 Counts are Associated with Interactions of Gender and Psychosocial Stress." Psychosomatic Medicine.

7. Schulz, R, et al. (Spring 1997) "Health Effects of Caregiving: The Caregiver Health Effects Study: An Ancillary Study of the Cardiovascular Health Study," Annals of Behavioral Medicine, 110-116.

8. Schulz, R, et al. (1995) "Psychiatric and Physical Morbidity Effects of Dementia Caregiving: Prevalence, Correlates, and Causes," The Gerontologist, Vol. 35, No. 6, 771-791.

9. Shewchuk, RM, et al. (March 1998) "Dynamic Processes in Health Outcomes Among Caregivers of Patients with Spinal Chord Injuries," Health Psychology, 125-129.

10. Vitaliano, P, et al., (in press). "Coronary Heart Disease Moderates the Relationship of Chronic Stress with the Metabolic Syndrome." Health Psychology.

11. Vitaliano, P, et al., (in press). "Psychosocial Stress Moderates the Relationship of Cancer History with Natural Killer Cell Activity." Annals of Behavioral Medicine.

12. Wight, RG, et al. (March 1998) "AIDS Caregiving and Health Among Midlife and Older Women," Health Psychology, 130-137.

This report was prepared with assistance from:

Academy of Behavioral Medicine Research
Academy of Psychosomatic Medicine
American College of Neuropsychopharmacology
American Psychiatric Association
American Psychological Association
American Psychological Association-Division 38
American Psychosomatic Society
American Society of Psychiatric Oncology
College on Problems of Drug Dependence
International Psycho-Oncology Society
International Society for Traumatic Stress Studies
Society of Behavioral Medicine
Society for Developmental and Behavioral Pediatrics
Society for Public Health Education

The Center for the Advancement of Health is a health policy institute founded by the John D. and Catherine T. MacArthur Foundation and the Nathan Cummings Foundation. It works to incorporate into standard health care those proven strategies that recognize and respond to how profoundly our attitudes, emotions, behaviors, social relations and economic status impact the onset of some diseases, the progression of many and the management of nearly all. Facts of Life is funded in part by the Fetzer Institute.

For more information contact:
Petrina Chong Communications Director
Phone: 202.387.2829
E-mail Petrina Chong

© Copyright 1998, Center for the Advancement of Health