Schizophrenia is a chronic mental health disorder that usually begins between the ages of 16 and 30. The disorder is often severe enough to affect one’s entire life including how one thinks, acts, and feels.
Contrary to popular belief, the disorder does not involve multiple personalities or split personality disorder.
Individuals with schizophrenia may have a number of symptoms including hallucinations, delusions, unusual physical behaviors, and agitation. People with schizophrenia also usually have difficulty concentrating and communicating.
After reading this guide, you will have a better understanding of the ongoing and long-term care needs of elderly adults with schizophrenia. The financial and legal needs of individuals with schizophrenia will also be outlined. In addition, we will highlight some important organizations and supports available for caregivers and families of individuals with this disorder.
Causes of schizophrenia
Although researchers have been unable to identify any one specific cause of the disorder, it is thought that the disease is caused by a combination of hereditary factors, environmental factors, and brain chemistry. Scientists have discovered that schizophrenia interrupts the regulation of two brain chemicals, glutamate and dopamine.
Symptoms of schizophrenia
Several different symptoms may occur with schizophrenia although the number, type, and severity of symptoms are unique to each individual. Symptoms of schizophrenia are often identified as either “positive” symptoms referring to symptoms that are “added” to the person’s personality or as “negative” symptoms referring to things that are “lost” from the person’s personality.
Positive symptoms include:
- Disorganized thoughts
- Disorganized or difficult to understand speech
- Behavior problems
Negative symptoms include:
- Loss of personal drive and initiative
- “Flat” or lacking in emotional response
- Loss of interest in activities
- Loss of interest in relationships and social interactions
Effects of schizophrenia
Because of the severe mental, emotional, and cognitive impairment that occurs with schizophrenia, individuals with this disorder often experience drastic changes in many parts of life. As a result, suicide is a leading cause of death in people with schizophrenia with more than 40% attempting suicide at least once.
Men with schizophrenia are much more likely to attempt suicide than women with approximately a 60% incidence of suicide attempts in men. Despite these sobering statistics, some of these suicides are preventable.
Due to the changes in brain chemistry with schizophrenia, individuals often have difficulty distinguishing between what is real and what is not. This causes a great deal of anxiety, confusion and other emotions for the individual, depending on what they think or perceive is going on around them. Understandably, other people observing the individual with schizophrenia are often confused because they do not know what the person is perceiving.
People with schizophrenia also experience a great deal of social isolation.
If a person has hallucinations or delusions, they may begin to distrust others including family members and people they know well. In addition, it is not uncommon for individuals with schizophrenia to have delusions of grandeur or believe they are being persecuted or that others wish to harm them. The person may become so fearful that they become reclusive.
Besides hallucinations and delusions, other altered thought processes and a lack of emotional response combined with strange or unusual behavior often leads to further social isolation. Because of this difficulty communicating with others, individuals with schizophrenia are often unable to keep a steady job or acquire gainful employment.
Schizophrenia’s effects on family members
Because of the severe effects that schizophrenia has on an individual, such a diagnosis is often life-changing for family members who are close to the person as well. Family members and the person with schizophrenia may experience the serious stigma that still surrounds the subject of mental illness.
Spouses and family members’ personal and social lives are often significantly affected when someone in the family has schizophrenia. A loved one may be reluctant to go to work or run errands and leave the person home alone. A family member may also end up missing time from work in order to care for the individual during a psychotic episode or to seek medical treatment for an acute suicidal or psychotic episode.
Other effects that schizophrenia has on family members depend on the individual who has the disorder and how well their symptoms are managed with medication. Some people with the disorder learn to manage and cope reasonably well with medication while other individuals do not.
Because the symptoms of schizophrenia can change quickly and are better sometimes and worse other times, family members live with a great deal of uncertainty about how “well” or “ill” the person will be from day to day. This uncertainty combined with poor social support can lead to chronic stress and burnout for caregivers.
Due to stigmatization and the fatigue that comes from worrying and caring for a person with schizophrenia, a caregiver may have little time to meet their own needs. Social support from others may also be lacking for these reasons and the caregiver may find themselves socially isolated and in need of emotional support.
Support groups for caregivers and family members affected by schizophrenia are extremely valuable in meeting caregivers needs for emotional support. Socialization with others who have a common shared experience of living with a person who has schizophrenia is another benefit of support groups
Involuntary inpatient treatment
In addition, medication can be more effective for some people than for others. If the person with schizophrenia has severe psychotic symptoms and refuses to take their medication as prescribed, involuntary inpatient treatment may be required.
During this process, a person is admitted to an inpatient treatment facility and forced to comply with medication treatment until their symptoms are under control and to ensure their safety. Although individuals with schizophrenia are not usually a threat to others, some hallucinations and delusions may cause the person to become extremely fearful or angry and violent towards others in which case inpatient treatment is also necessary to protect others.
This process of involuntary inpatient treatment against a person’s will is referred to as “commitment” and can be very stressful and anxiety provoking for family members as well. Family members often experience a great deal of guilt and sadness if they are the ones who initiate the commitment process. In addition, family members are also responsible for making treatment decisions with medical staff on the person’s behalf which can be very stressful as well.
Medications for schizophrenia
The primary treatment for schizophrenia is medication, usually a type known as antipsychotics.
Common medications for seniors with schizophrenia
A psychiatrist may also prescribe anti-anxiety and/or antidepressant medications in combination with one or more antipsychotic medications. The goal of medication therapy is to achieve an acceptable level of symptom control on the lowest dose possible without triggering any significant side effects.
Finding which medications and which combinations of medications work best to manage symptoms can take some time. In addition, medications for schizophrenia often take several weeks before they become effective which can add to the length of time it takes to find the appropriate medications and dosage for a person.
In addition, newer medications (known as second-generation antipsychotics) which have fewer side effects are often more costly than older (first-generation) medications. Medications may also become ineffective over time or may be ineffective for treating new symptoms. An older adult with schizophrenia may also have other chronic health conditions and need help taking medication as prescribed.
It is important that a person with schizophrenia have their medication and care needs managed by a psychiatrist who may also be part of a larger mental health care team. In addition to prescribing and monitoring medication effectiveness and side effects, a psychiatrist is able to counsel an individual about how to manage the disorder and provide psychotherapy as needed. A psychiatrist will also be able to assist the caregiver and family in better understanding the disorder and how they can help the person living with schizophrenia.
Although medication can be very effective for symptom control and management, individuals often state they do not like how the medications make them feel. Some people taking medication says it makes them feel “numb” or “flat” emotionally, although these feelings can also be symptoms of the disorder. Many of the medications for schizophrenia have serious side effects such as involuntary tremors or tics that may be permanent and cause embarrassment.
As a result, it is common for people with schizophrenia to stop taking their medication and have a relapse or worsening of symptoms or problematic behavior.
When care needs increase
As noted earlier, a person may also require hospitalization or inpatient treatment during an acute psychotic or suicidal state if they are in immediate danger of hurting themselves or others. However, a person in these states is often resistant to being admitted for inpatient treatment so an individual may need to be admitted involuntarily if they meet the criteria according to the laws in each state.
Because disorganized behavior and thought processes are common with schizophrenia, a person may also need help finding appropriate living accommodation and paying bills as well as meeting their personal care and nutritional needs.
Legal considerations associated with schizophrenia
Due to disorganized thinking and psychotic symptoms common with schizophrenia, an individual may often not have the capacity to make financial or health care decisions on their own behalf. This may include not being able to prepare legal documents and sign them once they have been diagnosed with schizophrenia and are having symptoms of cognitive and/or mental impairment.
A psychiatrist, doctor, or lawyer will be able to advise whether or not an individual meets the requirements of capacity required to sign legal documents.
As a result, is important that a person with schizophrenia has some legal documents in place to ensure their needs are met and that someone is acting in their best interest at all times.
Some of the most important legal documents to consider with schizophrenia include power of attorney, particularly a mental health power of attorney and a financial power of attorney, and a psychiatric advance directive (PAD).
Power of attorney
Power of attorney (POA) is a legal document in which a person, known as an agent, is appointed to make decisions on behalf of an individual, known as the principal. This decision-making power is usually granted when an individual cannot make decisions on their own.
A general (POA) document may be drafted which allows an individual’s agent to make a wide variety of decisions on their behalf including decisions about medical treatment, finances, living arrangements, etc. Alternately, a special or limited POA document may be prepared which give an agent more narrow and specific decision-making powers.
For example, a financial power of attorney document allows an appointed agent to make only financial decisions on an individual’s behalf. Likewise, a mental health care power of attorney allows an appointed agent to make decisions about mental health treatment on a person’s behalf. It is recommended that a person with schizophrenia and their family consult a lawyer to find out what legal documents would be best suited to their needs.
Psychiatric Advance Directive
The psychiatric advance directive (PAD) is another legal document that is beneficial for individuals with schizophrenia to have. In this document, a person identifies what mental health treatment they wish to receive in the event of an acute mental health episode. This may include information about medications, clinical trials, psychotherapy another counseling methods, electroconvulsive therapy, and as well as experimental treatments.
An individual with schizophrenia will likely need the assistance of their family to complete this document. However, this document can provide peace of mind to the person with schizophrenia, knowing that their preferences for treatment will be known and followed when they are too ill to make good decisions and choices.
Financial concerns associated with schizophrenia
Another important aspect of schizophrenia is the financial needs that it creates for a person and their family. Because an individual is usually in their teens or young adult years when they are diagnosed with the disorder, they may have been unable to work for any significant amount of time during their adult life.
As a result, they may have little to no savings by the time they reach their older adult years. If they did work, they may not have worked enough to be eligible for disability insurance programs or they may have lost their disability benefits if they worked too much.
If they have not done so already, a person with schizophrenia and their family should inquire about the individual’s eligibility for financial and mental health assistance through the following programs:
- Supplemental Security Income (SSI)
- Social Security Disability Insurance (SSDI)
- Programs of All-Inclusive Care for the Elderly (PACE)
Medicare is available to individuals who are 65 years older, disabled, or blind. Medicare Part B provides coverage of outpatient mental health services and appointments with mental health professionals. Individuals with schizophrenia are usually able to meet the definition of “disability” as outlined by Medicare.
Individuals with little to no income are usually eligible for Medicaid and SSI, and if an individual is 55 years older, they may also be eligible for PACE programs if these are available in their area.
If the person has worked or has a spouse who has worked, they may be eligible for SSDI benefits as well.
Organizations for schizophrenia support
There are a number of different organizations that provide resources and support for individuals with schizophrenia and their families including:
- Schizophrenia and Related Disorders Alliance of America (SARDAA)
- National Alliance On Mental Illness
- Mental Health America
- Choices In Recovery
Proximity of care is very important when considering options
Research care options that are nearby when thinking about the next step for your loved ones.
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