UNDERSTANDING CAREGIVER STRESS
A 2003 study of caregivers by a research team at Ohio State University has proven the off-repeated adage "stress can kill you" is true. The focus of the investigation was the effect the stress of caregiving had on caregivers. The team, led by Dr. Janice Kiecolt-Glaser, reports on a 6-year study of elderly people caring for spouses with Alzheimer's Disease. The study not only found a significant deterioration in the health of caregivers when compared to a similar group of non-caregivers but also found the caregivers had a 63% higher death rate than the control group.
The demands on a caregiver result in a great deal of stress. It is often observed in aging publications that stress can induce illness and depression. The resulting poor health can further decrease the effectiveness of the caregiver and in some cases, as proven by the study mentioned above, even cause premature death.
Stress can be defined as a physiological reaction to a threat. The greater the threat -- the greater the level of stress. A threat is a real or perceived action against our person. Threats may include the anticipated possibility of death or injury but may also include challenges to our self-esteem, social standing or relationships to others or a threat may simply be a potential or real disruption of our established routines. What is stressful to one person may not be to another. For example, bumper-to-bumper traffic might be stressful to the woman executive who is late for an important meeting but to the delivery man who has no deadline and is being paid by the hour, it may be a welcome respite to relax and listen to the radio.
Stress produces real physical changes. In some unknown way the fears in our mind, both conscious and unconscious, cause the hypothalamus and pituitary glands, deep in our brain, to initiate a cascade of hormones and immune system proteins that temporarily alter our physical body. This is a normal human physiological response inherent to the human body when a threat is perceived--real or not. It is often called the "fight-or-flight response" or the "stress response". The purpose is to give us clearer thought and increased strength as well as to activate the immune system to deal with potential injury and to repair potential wounds. When the perceived threat is removed, assuming no damage is done, the body returns to normal.
A team of researchers at Ohio State University Medical Center has found a chemical marker in the blood that shows a significant increase under chronic stress and is linked to an impaired immune system response in aging adults. The team, led by Dr. Janice Kiecolt-Glaser, reports in the June 30, 2003 issue of Proceedings of the National Academy of Sciences on a 6-year study of elderly people caring for spouses with Alzheimer's Disease. With the caregivers, the team found a four-fold increase in an immune system protein -- interleukin 6 (IL-6) -- as compared to an identically matched control group of non-caregivers. Only the stress of caregiving correlated to the marked increase of IL-6 in the caregiver group. All other factors, including age, were not significant to the outcome. Even the younger caregivers saw an increase in IL-6.
The study also found that the caregivers had a 63% higher death rate than the control group. About 70% of the caregivers died before the end of the study and had to be replaced by new subjects. Another surprising result was that high levels of IL-6 continued even three years after the caregiving stopped. Dr. Glaser proposes the prolonged stress may have triggered a permanent abnormality of the immune system.
IL-6 is only one cytokine--an immune system mediator protein--in a cascade of endocrine hormones and cytokines that are released when the brain signals a person is threatened with harm, injury, undue mental or physical stress or death. The hormones prepare the body to react quickly by increasing heart rate, making muscles more reactive, stimulating thought, altering sugar metabolism and producing many more changes that result in the "rush" people experience when they think they may be harmed.
The cytokine release is mediated by IL-6, which takes the role of directing the immune system to gear up to prevent infection, promote wound healing and repair organs and muscles from any injury that may result from the imminent danger. The release of cytokines such as IL-1, IL-6, IL-8, TNF and other proteins such as CRP (C reactive protein) also promote development of inflammation, which is essential for blood cells to home in on injury or infection. In addition, these chemicals promote development of various types of immune system blood cells in bone marrow. This response to harm -- either real or perceived -- is an important and beneficial life-saving activity of a normally functioning body.
The problem is if this response is initiated over and over again, frequently, and over a long period; it can have a dangerous effect on the body. This constant initiation of the stress response is common among caregivers -- especially those caring for loved ones with dementia. Providing supervision or physical assistance many hours a week and over a period of years turns out to be extremely stressful. This type of stress is often unrelenting, occurring day after day and week after week. And the long-term effects of this stress are more pronounced in middle-aged and older people who are precisely the group most likely offering long term care to loved ones.
In most younger people, when the threat lessens or disappears, the body reacts fairly quickly to shut down the stress response and return things to normal. But numerous studies have shown, as people age, the chemical cascade from stress lingers. Over a period of time, this constant chemical stimulus impairs the immune system and results in early aging, development of debilitating disease and early death. In this altered state, the body maintains high, potentially harmful levels of IL-6. The body does not return to normal without intervention.
Prolonged high levels of IL-6 and the accompanying hormones and cytokines have been linked to: cardiovascular disease, type II diabetes, frequent viral infections, intestinal, stomach and colon disorders, osteoporosis, periodontal disease, various cancers and auto immune disorders such as lupus, rheumatoid arthritis and multiple sclerosis. Alzheimer's, dementia, nerve damage and mental problems are also linked to high IL-6. Wounds heal slower, vaccinations are less likely to take and recovery from infectious disease is impaired. People who have depression also have high levels of IL-6. Depression in caregivers is about 8 times higher than the non-cargiving population.
This debilitating response to chronic stress is not unique to humans. Animals are affected as well. A 2004 PBS Scientific American Frontiers Special entitled "Worried Sick", explored the effect of chronic stress on animals. Observations in the field and experiments on animals exposed to chronic stress, uncovered the same phenomenon of debilitating disease and early death found in humans. Blood tests on the affected animals confirmed high levels of IL-6. The work of Dr. Janice Kiecolt-Glaser’s team was also followed in the Special.
The information above should provide a compelling reason to eliminate or reduce the stress of caregiving. Following are some strategies to deal with caregiver stress.
STRATEGIES TO REDUCE CAREGIVER STRESS
Ask for help.
Most caregivers are reluctantly thrust into their role without preparation because the need for care usually comes with little warning. Caregivers end up operating in a "crisis" mode--arranging medical care and living arrangements, scheduling care time, providing meals and household chores and so forth. Because they are so stressed and burdened, they rarely take time to find out what resources are available to help them. Ironically, caregivers often sever ties with family, friends and support groups about this time just when help from these people is most needed.
As a caregiver you must ask for help. The stress of going it alone is dangerous to your health. If it's difficult to ask for yourself, use an advocate--a sibling, friend or professional care manager --to arrange a meeting and get formal, written commitments from those people who are willing to help you. The extra help will give you breathing room to find all those resources that are there to help you.
Seek care management advice.
A number of organizations and private companies will give you advice and guidance -- many for free. If your care recipient has a very low income, you might get free help from your local Area Agency on Aging. A lot depends on available funds. Go to http://www.longtermcarelink.net/eldercare/ref_state_aging_services.htm for statewide lists of agencies.
A good source of free professional advice is the rapidly growing business of non-medical home care companies. Most will offer free consultations and these companies will also provide paid aides to help you with your loved-one…such things as bathing, dressing, shopping, household chores, transportation, companionship and much more. These people may also help you coordinate adult daycare or other community services. Go to http://www.longtermcarelink.net/a7homecare.htm for a nationwide list.
You may wish to pay for a formal assessment and care plan from a professional geriatric care manager. Go to http://www.longtermcarelink.net/a2bfindmanager.htm for a nationwide list of these valuable care specialists. Even though it may cost you a little money to hire a care manager, this could be the best money you will ever spend. Care managers are valuable in helping find supporting resources, providing respite, saving money from care providers, finding money to pay for care, making arrangements with family or government providers and providing advice on issues that you may be struggling with.
Take time off--find temporary substitutes.
Taking a break from caregiving is just as important as taking a break at work or taking that long-awaited vacation. A care manager may be of help in selecting the best temporary help to give you a break. Or you may make arrangements with family or friends to give you a break from caregiving.
Make plans for funding future care arrangements for you or for a healthy parent.
The analysis of data from three national surveys (Mature Market Institute, National Alliance for Caregiving and LifePlans, Inc) points out that employees caring for disabled elders who have long term care insurance (LTCI) are nearly two times more likely to be able to continue working than those caring for non-insured relatives. In addition, working caregivers of those with long term care insurance said that they were less likely to experience some type of stress, such as having to give constant attention to the care recipient or having to provide care while not feeling well themselves. Also, the group with insurance devoted more "quality time"--more companionship and less hands-on assistance--than the group without.
See if your healthy parent can still buy insurance. If he or she can't afford it, see if other family members might contribute to premiums. There are also useful strategies using a reverse mortgage to buy long-term care insurance and life insurance for your loved ones. You should also consider insurance for yourself so when you need care someday, it won't be so stressful on your caregivers. To learn all about long term care insurance and reverse mortgages go to www.longtermcarelink.net.
Use assistive technology.
There are a number of technologies to make sure your loved-ones are safe while you're away. Such things as emergency alert bracelets and pendants, GPS tracking for wandering, remote video surveillance, telehomecare, sensory augmentation and all sorts of assistive devices to help disabled people cope on their own. Go to www.longtermcarelink.net for more information.
Remove non-caregiving stress from your job or at home.
It's obvious if you can remove other stressors in your life, you can cope better with the stress of caregiving, which you may not want to or can't remove. The internet is your best resource here. Go to www.google.com, the most relevant non-commercial search engine on the net. Type in "work stress" and you can browse 3 million plus URL's. For home stress type in "home stress" and browse 4 million plus URL's. Everything you ever wanted to know is buried somewhere in those millions of pages.
Attend workshops or seminars to uncover additional strategies.
The Utah Eldercare Planning Council offers worksite or community presentations on various eldercare issues. Community workshops like these are available across the country. These learning experiences are an opportunity to find help with your own caregiving situation. To learn more about the Utah Eldercare Planning Council please go to www.careUTAH.com.
PART II OF THIS ARTICLE
Next month, in part II of this article, we will offer lifestyle strategies that can lead to a reduction of IL-6 by reducing stress. We will also discuss holistic strategies that redirect the mind to "clear" perceptions of harm that produce the stress response.
FINDING RESOURCES FOR CAREGIVERS
The free resources of www.longtermcarelink.net are designed to provide you with government provider lists, free care assessments, information and care provider lists for reducing your eldercare burden and the attending stress. The site is a non-commercial source of help. It is the largest and most comprehensive free source of long term care information on the Internet. There are no ads or solicitations or pop-ups. A related site for the veterans aid and attendance benefit is found at www.veteransaidbenefit.org. This is a benefit that could be available to up to one third of all US residents over the age of 65 under certain conditions. It could provide an additional monthly income of up to $1,843 a month for qualifying veterans households.