Understanding Caregiver Stress

The National Care Planning Council recently published an article on caregiver stress.  A 2003 study of caregivers by a research team at the Ohio State University has proven that the off-repeated adage "stress can kill you" is true. The focus of the investigation was the effect that the stress of caregiving had on caregivers. The team, led by Janice Kiecolt-Glaser, Ph.D., reports on a six-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 it also found that 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 publications about the elderly 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 executive who is late for an important meeting, but to the delivery driver 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 an individual’s mind, both conscious and subconscious, cause the hypothalamus and pituitary glands, deep in the brain, to initiate a cascade of hormones and immune system proteins that temporarily alter the 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 the 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 six-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 problem is if this response is initiated frequently and over a long period, then 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.

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 eight times higher than the non-caregiving population.

Andrew H. Hook
Oast & Hook
www.oasthook.com

Comments

[Linda]

What a great article. I have just been victim to the exact phenomena that is being described. I took care of my aunt dying from breast cancer for 8 months. I have gained 15 pounds mostly in the stomach, possibly from cortisol excretions from stress. I am fatigued from insufficient sleep. And I know I have had a mild to moderate care of depression since she died. Because I had to stay focused and strong during the time I was a primary caregiver, I did not notice what had happened to me until it was too late. I have also seen similar results with my mother in law (97) who took care of her husband for 5 years with dementia. This is a real problem and there needs to be a lot more education and advertisement of resources for caregiver mental and physical health.

[Elaine Williams]

As a caretaker of my husband for 11 months who had esophagus cancer, I can attest to the stress levels of being a caretaker. I was, healthy only 47 years old, so I can only imagine the stress on an older person. It still took me approximately three years to deal with my own stress related issues that appeared after the death of my husband.

[Carol D. O'Dell]

I know about caregiver stress firsthand, and yet I have to say, we have to learn how to do this.
I cared for my mother for close to 15 years while juggling a family--the last three years of her life (she had Parkinson's and Alzheimer's) I brought her into our home and the stress levels went through the roof. I gave a home passing but it took me to my bitter edge.
And still, I believe in caregiving. I believe families should at least try to take care of families--I also believe they need more resources and support.
We also have to face the fact that we will most likely care give more than once--spouse's parents, moms, dads, other loved ones get cancer, disabilities, car accidents.
How do we learn to flow in and out of our caregiving roles without it consuming us?

Now that we're aware of the ramifications of caregiver stress, we need to begin to start asking, "What is the solution?"

~Carol D. O'Dell
Author of Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir

available on Amazon
www.mothering-mother.com