Question

What does the typical family go through when they have a family member who is experiencing schizophrenia, both immediately and over time?

Answer 1

Emil Kraepelin (1856-1926), the medical director of Heidelberg Clinic, was the first to distinguish between schizophrenia (which he termed dementia praecox) and manic-depressive mental disorder. In his view, dementia praecox could be diagnosed by noting the evolution of its symptoms as well as its evolving deterioration over a period of months and years. He also believed that those diagnosed with dementia praecox had a poor long-term prognosis. In the early 20th century, psychiatrists continued to refine the diagnostic criteria for schizophrenia. In 1910, Eugen Bleular, a Swiss psychiatrist, introduced the term “schizophrenia.” The literal meaning of the word is “the splitting or tearing of the mind and emotional stability of the patient” (Walker et al., 2005). Bleular believed that any person suffering from schizophrenia would exhibit symptoms (disturbances of association, disturbances of affect, and disturbances of attention, ambivalence, autism, abulia, and dementia) that separated the disorder from that of “multiple personality.” He created a symptom rubric that displayed these “fundamental symptoms” that persons suffering from schizophrenia displayed through all the stages of the illness. Other symptoms such as, “accessory symptoms” (delusions, hallucinations, movement disturbances, somatic symptoms, manic and melancholic states) were also observed in some patients, but were not unique to schizophrenia and could also be found in other mental disorders.

The Diagnostic and Statistical Manual of Mental Disorders, (DSM-IV-TR, 2000) defines schizophrenia as “a mixture of characteristic signs and symptoms (both positive and negative) that have been present for a significant portion of time during a 1-month period (or for a shorter time if successfully treated), with some signs of the disorder persisting for at least 6 months”. Positive symptoms include the presence delusions, hallucinations, disorganized speech, and grossly disorganized or catatonic behavior. Negative symptoms are recognized by a lack or paucity of emotions (affective flattening), of speech (alogia), or of goal-directed behavior (avolition) (DSM-IV-TR, p. 299).

Schizophrenia is a continuous, life time major psychiatric disorder that may affect children, adolescents and adults. It tends to strike most often in late teens and early twenties, slightly earlier in men than in women, although late onset illness can occur as late as the 70s. Schizophrenia before puberty is very rare. Depression is episodic, recurrent in nature, characterized by low mood, decreased psychomotor activity and depressive cognitions. Caregivers play a significant role in caring people with chronic mental illness. Caring role is not an easy task and that may impact on their personal life. Individuals with schizophrenia are less likely to gain employment and to marry, which produces grater amount of burden on caregivers. As a consequence, the remaining family members need to undertake the care of the ill person.

Families provide emotional and financial support, as well as advocacy and facilitation of treatment for their mentally ill relatives. Families of patients with schizophrenia face many challenges. The concept of family burden illustrates the impact of mental illness on families. Family burden in caregiving of severe mental illness especially with regard to schizophrenia includes missed work, domestic routine disturbance, financial strain, effect on social and leisure activities, and decreased caring role to the other family member. The family remains the major source of care for the patient with schizophrenia and has a profound effect on their illness. Having a patient with schizophrenia in a family also affects the roles and interactions within the family. They face lots of burden including care burden, fear and embarrassment about illness signs and symptoms, uncertainty about the course of the disease, lack of social support, and stigma.

Parents of schizophrenic adult children often grieve the loss of the child they knew before the onset of the illness and who that child might have become had the illness not occurred. Such grief and embarrassment often lead to profound isolation. These parents may also be providing their schizophrenic child with emotional as well as financial support and housing. Aging parents who are caregivers for such individuals often tend to worry about what will happen to their child when they are die or become infirmed in some way and can no longer care for him or her. In their article, Jungbauer and colleagues report on the burden of spouses of persons with schizophrenia. The spouses and partners of patients with schizophrenia experience illness burden that overlaps and extends beyond the experience of parents. Not only are there practical considerations, such as loss of income, there may also be the loss of the benefits of a partnership when the spouse assumes the role of the caregiver for the mentally ill partner. A diagnosis of schizophrenia can be particularly devastating for the healthy partner when the onset of the illness occurs after the marriage or after the start of the relationship, or when the partner who is ill becomes threatening or assaultive during illness exacerbations.

Siblings also may have specific needs. A study found that sisters are more likely than brothers to assume a primary role. By necessity, siblings become more involved with the mentally ill relative when parents are unavailable or aging. Schizophrenia creates issues with the sibling bond that evoke feelings of guilt in the healthy sibling; this dynamic may create a variety of coping patterns in the healthy sibling including avoidance, normalizing, caregiving, and grieving. Furthermore, healthy siblings often have a fear of becoming mentally ill or passing on "bad genes." This is particularly true if there also is a parent with a mental illness.

A particularly at-risk group includes the children of patients with schizophrenia. One recent study of more than 400 patients with schizophrenia found that more than one third had children. Adult children of patients with schizophrenia have been found to have had residential instability as children and to have experienced feelings of embarrassment or fear related to their parents' symptoms. These adult children reported great variation in knowledge regarding their parents' illness, with some having had no information at all.

Everyone in a family is affected by the illness of one member because it changes their lifestyle. Relatives themselves become psychologically distressed because of all the stress from the illness (Chambless, Bryan, Aiken, Steketee, & Hooley, 2001). This stress from the patient starts to influence daily activities because it is very much a part of their life. The illness takes over the lives of everyone in the family, even if they are not the ones with the disorder. Also, siblings of the patient who are living with the parents and the patient after rehabilitation are also affected by the expressed emotion in the environment. This is not helpful for the family as a whole and the patient because the stress will send the patient back into their disorder. Often it is hard to change the way of the relatives act, as most of them are trying to deal with the effects of the disorder or most are trying to come to terms with it, causing more stress which in turn can lead to a relapse. The family starts to fall apart and create more problems for themselves than because of the ubiquity of schizophrenia.

The family remains the major source of care for the patient with schizophrenia and has a profound effect on their illness. Having a patient with schizophrenia in a family also affects the roles and interactions within the family. They face lots of burden including care burden, fear and embarrassment about illness signs and symptoms, uncertainty about the course of the disease, lack of social support, and stigma.

Living with a schizophrenic relative is stressful. Studies have demonstrated that family caregivers of persons with severe mental illness experience significant stresses and have a high level of burden. The perceived burdens among family caregivers of patients with schizophrenia had been studied in various Regions and cultures. In Europe, a Spanish study described several major effects of caring, which included poor health of family members, disruptions to social and leisure activities and domestic routines, and reduction in household income

When a family member is diagnosed with schizophrenia, a number of scenarios may occur. Sometimes, relatives will gather in support of a sick family member, ensuring that the person receives the best treatment possible. In this type of healthy family environment, relatives can support their loved one by attending group or family therapy together. In the therapy environment, relatives can learn more about the illness, its treatment, and its triggers.

On the other hand, sometimes people with schizophrenia do not receive support from their families. Without treatment, their symptoms might become intense, and their odd behaviors isolate them from their families. When this occurs, people with schizophrenia often experience financial problems, have trouble taking care of themselves, and may commit violent acts. At this extreme, schizophrenia can have a devastating effect on a family.

The family experience of schizophrenia is not restricted to burden; it may also be rewarding, particularly as the mentally ill relative makes progress in his or her recovery. Schizophrenia can be an extremely disabling individual disorder but it is also clear that it is a “family disorder” as well.