_The Price of Caring

When it comes to Alzheimer’s disease, a progressive deterioration of the body’s neurologic systems, the medical community pours a lot of time and money into drug research in hopes of finding a cure or improving treatment methods.

_Elizabeth Gonzalez

Gonzalez is an associate professor and department chair of the doctoral nursing program, whose current research interests include determining the effects of LED Daylighting Luminaire to reduce symptoms of dementia.

Dr. Elizabeth Gonzalez, professor in the College of Nursing and Health Professions, takes a different approach to Alzheimer’s research, choosing instead to study the effects of chronic stress on Alzheimer’s patients … and their caregivers.

Many caregivers are unprepared for the strain of caring for family members with Alzheimer’s, and Dr. Gonzalez recognizes the need for better caregiver support. Though an Alzheimer’s diagnosis is very sad and frightening for the patient, little attention is paid to how a diagnosis affects the patient’s family—the people who are likely responsible for caring for a patient as his or her condition deteriorates. “We rely on family members to care for patients because the health care system cannot afford to support these individuals in institutions, but the resources we have presently [for families] are not sufficient.”

Alzheimer’s disease is a chronic condition that inhibits communication and renders patients unable to care for themselves. With an average lifespan of 10 years post-diagnosis, caregivers have a long road ahead of them in terms of caring for a family member with a steadily worsening condition.

Dr. Gonzalez explains the difference between chronic and acute stress, and notes that the human body has different ways of responding to both. Acute stress occurs at the onset of a stressful event, but once the event ends, the stress disappears and the body returns to equilibrium. Long-term exposure to stress—chronic stress—creates a hyper arousal of the body which leads to physiologic alterations such as high blood pressure and immune dysfunction. With a condition such as Alzheimer’s, family caregivers are likely to suffer from chronic stress. In addition to this, caregivers often face anxiety and depression in the face of such bleak prognoses.

In a three year research project funded by the National Institute for Nursing Research, Dr. Gonzalez tested the effects enhanced resources had on family caregivers. Caregivers were entered into a six week intervention program, beginning with an entrance interview that assessed participants’ levels of stress, depression and anxiety. The intervention program met once a week and ended with an interview to gauge stress, depression and anxiety post-study. Participants were interviewed once more three months after the study ended.

The six week program helped participants identify stressful situations and develop stress-relief strategies they feel comfortable using during every day caregiving. The stress-relief strategies are based on the notion that individuals already have their own ways of dealing with stressful events, and that these have worked for them in the past. These strategies are then applied to their caregiving situations—as Dr. Gonzalez notes, “they’re not learning something different; they’re just consciously doing what they know works.”

Dr. Gonzalez’s intervention entails psycho-educational and cognitive behavior strategies, measures she describes as “not therapy, but having that element where individuals learn how to reframe the problem.” An issue in family caregiving is that caregivers often respond to negative patient behaviors personally. Intervention gives them a different perspective of patients, reminding them that behaviors are simply characteristic of the disease and shouldn’t be personalized. This new perspective also gives caregivers an opportunity to plan for negative behaviors and test strategies they learn during intervention.

One such intervention module employs the use of cards marked with specific behaviors relevant to symptoms of Alzheimer’s. In both group and individual sessions, participants sort through the cards, ranking them in order of most stressful behaviors to least stressful behaviors. Participants are asked to select three situations they consider most stressful; their “homework” is to identify strategies for dealing with these situations, determine how helpful each strategy is, and share their results with the intervention group at weekly meetings.

Though intervention groups only met once a week, Dr. Gonzalez and her colleagues were available by phone throughout the entire study and even beyond the last meeting. Dr. Gonzalez believes this fact helped caregivers even more than originally anticipated. “I believe, based on their evaluations, that knowing [my staff] was there to call built up their confidence and reminded them they are not on their own.”

Dr. Gonzalez presented her research in the summer of 2012 in Budapest at the International Society for Behavioral Medicine. A control group was tested before the study along with the intervention group; when the study ended, the intervention group’s test scores increased significantly compared to the control group, showing the positive effects of learning stress-management skills.

Interestingly, the intervention group also reported more anxiety post-study when compared to the control group. Dr. Gonzalez explains, “They more they learned, knowing what to expect—knowing that the caretaking process is a very long one—made them anxious.” She also feels that participants may have experienced separation anxiety once the study ended and they no longer had the support of a weekly meeting.

Though the anticipation of how the disease will progress caused caregiver anxiety to increase in the immediate aftermath of the program, they reported significantly lower anxiety at the three month post-study interview than the control group, who reported increasing levels of anxiety.

Fortunately, in a three month post-study interview, participants’ anxiety decreased significantly, while the control group reported increasing levels of anxiety. Dr. Gonzalez explains that at three months post-study, participants knew of normal changes in the disease and they knew what to expect, which allowed them to feel more ready to care for their loved ones.

Dr. Gonzalez solicited all patients and caregivers from the Drexel University Department of Neurology, collaborating with Dr. Carol Lippa, head of the Memory Disorders Clinic at Drexel University College of Medicine. Drs. Gonzalez and Lippa have been collaborators for many years, and both currently serve on the Alzheimer’s Association board of directors for the Philadelphia, Delaware and New Jersey regions.