BetterConduct

It would be quite a challenge to separate all the factors that contribute to caregiver stress. Even if this were possible, the interaction of the various contributors—and the variance of each individual circumstance – would be difficult at best to ascertain. The ways stress is expressed as well as the specifics of the situation itself would influence how stress is perceived and addressed. The duration and amount of time caregiving, the qualities of the caregiver and IWD, and the strengths and conflicts in the relationship prior to the stressor would also have to be considered. Age, gender, ethnicity, economic and educational attainment also influence caregiver response to stress.

 

Scientists tend to separate stressors into two categories – primary and secondary. Before we discuss each group, it should be emphasized or stressed (no pun intended) that primary stressors are no more important than secondary and vice versa. Primary stressors are the needs of the patient and the care necessary to meet those needs. Secondary stressors are a result of the caregiving situation itself: primary caregiving stressors lead to other hardships or difficulties.

 

Primary stressors include the characteristics of the patient with dementia. These include the cognitive level of the individual, the problematic behaviors he/she presents (which includes resistance to care and level of supervision required), and functionality in activities of daily living. Primary stressors are likely to intensify and continue over time due to the progression of dementia. Another primary stressor would be the caregiver’s feelings of competence – or lack of confidence – in their role as a caregiver. Still another is the extent the relationship between the caregiver and patient has changed. This change includes the diminished reciprocity of the relationship itself. There tends to be a sense of personal loss in not being able to confide in your loved one or do the things you once did or had planned together in the future. The individual with dementia may no longer do things for you or appear to be the person you knew well. The caregiving process may consume much time and energy resulting in depletion of inner resources. These demands extend into other areas and limit the time the caregiver can participate in activities enjoyed in the past. These changes in the caregiver/patient relationship and time constraints are significant stressors.

 

Holmes and Rahe (1967), in a now famous study, asked almost 400 people to rate life stressors and compiled the results into what is known as the Social Readjustment Rating Scale. Although this scale was designed to rank stressful life events to predict the likelihood of future illness, the scale remains significant today when used to determine the impact of change on an individual. Holmes and Rahe assigned Life Event Values to each stressful event. The higher the rating, the more stress the event caused. As a reference point, the highest rated stressful event, Death of a Spouse, was given the value of 100. Divorce and Marital Separation were 73 and 65 points, respectively. Change in health of a family member was ranked as 44, change in financial state as 38, and revision of personal habits, sleeping habits, and social activities ranked 24, 15 and 18, respectively. Taken in sum, caring for a IWD may involve all these stressors or components of each—in addition to others--- and therefore result in an incredibly significant source of stress.

 

Secondary stressors evolve from primary stressors and may be just as powerful and pervasive. Examples include family and job conflict, economic strain, attempts to de-stress, and social support system issues. Family conflict is extremely common in caregiving situations. There are disagreements in treatment, opinions and criticism of coping, discrepancies in the perceived seriousness of the problem, lack of respect or not spending time with the patient, and/or avoidance of sharing in caregiving responsibilities. Family members may not show appreciation (or patience) for the work of the caregiver. Job conflict can be an additional secondary stressor for those who must juggle career and caregiving. Caregiving can result in work absences, lack of focus, decreased productivity, frequent interruptions, and worry/anxiety. In addition, the care process can cause economic strain through increased expenses for supplies, additional assistance, day care, doctor appointments, etc.

 

Ever wonder why two caregivers can experience similar caregiving situations and stressors and yet respond in totally dissimilar ways? Scientists believe mediating factors may be one key difference. Mediating conditions or factors are defined as interventions that may lessen the impact of primary stressors or decrease the likelihood that secondary stressors will evolve (Pearlin et al, 1990). Two mediators commonly mentioned in the literature are social support and coping strategy.

 

Social or community support or isolation, whether perceived or real, can greatly impact the stress of the caregiver. These effects can be positive and negative. Many individuals outside the caregiving situation avoid contact due to awkwardness in not knowing what to say, embarrassment, or uncertainty of how to help. Others let you know they care, lift your spirits, and are there to help you feel good about yourself and your decisions. Many caregivers become more aware of their strengths and grow in new skills or as a person.

 

Another mediating factor that has been the subject of much caregiver research is coping strategy. Most people think of coping strategies as ways to de-stress. These include spending time alone, eating, drinking, smoking, taking medication, exercising, reading, journaling, watching television, etc. But coping also refers to the management of a situation and what meaning is ascribed to it. Coping strategies can include learning as much as possible about the illness, keeping the individual with dementia busy, prayer, humor, acceptance of the situation or IWD as is, focusing on the present, reducing expectations, redirecting behavior, etc. Mediating factors cannot explain all the differences in caregiver responses, however. But they certainly appear to be intimately involved in buffering the stressors of caregiving.

 

Sources:

Holmes TH, Rahe RH.  The social readjustment rating scale.  Journal of Psychosomatic Research, 1967;11(2):213-218.

Pearlin LI, Mullan JT, Semple SJ, Skaff MM.  Caregiving and the stress process:  An overview of concepts and their measures.  The Gerontologist 1990;30(5):583-594.