Coping and Treating Delusional Disorder (DD)
Why summarized the information below?
Purpose: To obtain information in order to make informed decisions.
Reminders: A little learning is dangerous but ignorance is worse.
However, all information is to some extend biased and vested but transparent information helps one to ask relevant questions to arrive at a better decision.
All DD suffer enormously and family living with them suffers too.
Coping with mentally ill spouse or parent or brother or sister.
Amended from Kathleen Bayes, Aids to Coping with a Mentally Ill Spouse
Vol. 9, No. 2, The Journal, publication of NAMI-CA. ALLIANCE FOR THE MENTALLY ILL NAMI OF GREATER CHICAGO 1536 W. Chicago Ave., Chicago IL, 60642 312-563-0445 312-563-0445
1. The mental illness your spouse suffers is something that is happening to your entire family. All are affected, it is nobody’s fault. It is not your spouses fault, it is not your fault, it is not your children’s fault. It is nobody’s fault. It is an unfortunate illness.
2. There is nothing much you can do to make him/her well, so don’t feel compelled to try. You don’t have the answers. All you can do is be supportive and loving (in a profound sense), and handle the everyday details and practical issues of life for him/her that he/she cannot cope with.
3. All members of the family have a responsibility to cope with the illness. Escape is not a helpful way of dealing with the crisis. You all need each other.
4. Educate yourself concerning every aspect of the illness. Education brings compassion. Ignorance encourages anger and fear.
5. Grieve your loss. It is a great loss. The grief process for this illness is identical to the grief process for the death of a spouse. You need to allow yourself to experience the entire process of grieving.
6. Get help for yourself to cope with this incredible challenge, either from your own counseling sessions, or a NAMI support group. You can’t do it alone. With help you can live your life with gusto. Don’t refuse to recognize your own need for help, just because the ill spouse is getting most of the attention. This illness is happening to your whole family. You should not try to do it alone.
7. Help your children understand the illness as much as their ages allow. No family secrets! Don’t deny them the opportunity of learning about the illness, the unfair stigma attached to it, and developing their skills in coping. It can be an incredible learning opportunity for them. If they need professional help to understand it and their own feelings, get it for them.
8. Try to create a safe environment for your spouse to express him/herself without feeling threatened, constrained or condemned. He/she desperately needs a nurturing, safe place to express the incredible frustration he/she is feeling about this illness.
9. You and your children need to share your feelings honestly and openly. They are suffering a loss also. It’s okay to feel angry and cheated. At times, you may feel embarrassed by the ill spouse’s behavior. Avoid trying to protect your spouse by not discussing the problem with family members or friends. Don’t require your children to conspire with you in a code of Family Secrecy. Family secrets will isolate you from others. Humor and openness will help the entire family, including your spouse, accept the illness for exactly what it is and reduce guilt for all family members. Remember, small children, by their very nature, assume that they are responsible for anything in their environment that goes wrong.
10. Never put yourself or your children in physical danger. If you sense your spouse is becoming dangerous, you should leave and call professional help. Trust your instincts and intuition on this one.
11. Become your spouses advocate with the professionals, and be assertively involved in treatment and medication decisions. Don’t be afraid to go with him/her to appointments, to call his/her psychiatrist if you suspect something isn’t right, or to inform the psychiatrist of the effects of the medication being prescribed. If the psychiatrist won’t cooperate with you, demand a different one! Stand your ground.
Treating Delusional Disorder
Some of the comments below are from discussions with doctors and psychiatrists but most of them are taken mainly from the Internet by cut and paste, with the bulk from:
1. Shivani Chopra, Delusional Disorder, Medscape Reference http://emedicine.medscape.com/article/292991-overview#showall Updated: Mar 10, 2011
2. THEO C. MANSCHRECK, M.D., M.P.H.Delusional disorder and shared psychotic disorder, Comprehensive textbook of psychiatry,
4. http://www.psychforums.com:80/delusional-disorder/—-Delusional Disorder Forum, where thousands of people discussed their life experiences dealing with delusional disorder patients.
5. http://www.mentalhealth.org.nz/file/downloads/pdf/file_187.pdf — A 37 pages pamphlet on Delusional Diiisorder from the Mental Health Foundation of New Zealand, which is revised on 2002.
6. http://psychcentral.com/disorders/sx11t.htm By John M. Grohol, Psy.D. From Psych Central on 1 June 2010
7. http://www.enotalone.com/article/4114.html The Chemical Imbalance in Mental Health Problems By Joseph M. Carver, Ph.D.
8. http://itb.biologie.hu-berlin.de/~hagen … usions.pdf Delusions as exploitative deception by Edward H. Hagen (2008)
9.http://www.xavieramador.org/ “I am not Sick, I don’t need help!” presentation at the 2011 Nordic Psychiatry Academy by Xavier Francisco Amador. A 76 minutes Video Presentation, which is very worthwhile listening.
Delusional disorder is a serious condition where a person experiences a loss of contact with reality. This is called psychosis and it takes the form of particular types of altered beliefs or delusions.
There is no medical test which can diagnose delusional disorder. It is diagnosed by the presence of altered or unusual beliefs in a person who has no other prominent symptoms of psychosis, and who continues to cope well with everyday activities. Apart from problems resulting from the delusion, the person functions well and their behaviour is not odd or bizarre. People with this condition in general continue caring for themselves reasonably well, and may continue working.
People with delusional disorder (DD) have non-bizarre delusions. Non-bizarre refers to situations that could be true in real life. For example, feelings of being followed, poisoned, infected, deceived or conspired against, having a disease or loved at a distance. People with delusional disorder also do not have any other obvious signs of a mental disorder i.e. they behave completely normally.
DD is the condition whereby people are chronically paranoid, have false suspicions, even hallucinate (sight, sound, touch, taste, and smell). They are relentless in their beliefs, the delusions are often elaborate and include many people, they’re consumed with trying to find “proof” of their beliefs, they deny they have any problem at all, and adamantly avoid treatment. The illness is chronic, progressive, and life long.
Whereas, people with schizophrenia typically have bizarre delusions (such as believing that their stomach is missing or that aliens are seeking them out to be their leader) and may also behave oddly or bizarrely. Bizarre delusions are clearly implausible, not understandable, and not derived from ordinary life experiences. Normally these people are under treatment and/or in psychiatric institutions.
What Causes Delusional Disorder?
As with many other psychotic disorders, the exact cause of delusional disorder is not yet known. Researchers are, however, looking at the role of various genetic, biological, and environmental or psychological factors.
There are organic causes: brain lesions/tumors, strokes, meningitis, epilepsy, brain injury, etc.
There are neurological illnesses: Parkinson’s Disease, Huntington’s Chorea, Alzheimer’s Disease, etc.
There are psychotic causes: schizophrenia, bi-polar disorder (manic-depressive).
And then there is good old fashioned alcohol/drug abuse.
There is standing alone Delusional Disorder (DD): due to genetics and/or chemical imbalance. See http://www.enotalone.com/article/4114.html
After more than a century of research, however, no compelling explanation of delusions has emerged.
Can Delusional Disorder Be Prevented?
There is no known way to prevent delusional disorder. However, early diagnosis and treatment can help decrease the disruption to the person’s life, family, and friendships.
Types of Delusional Disorder
The essential symptom of this condition is the delusions themselves – beliefs which seem quite real to the person, but are not shared by those around them. The characteristic feature is the lack of evidence for their belief or beliefs, although the person interprets events as unshakeable proof of their beliefs. Over time the person may become very preoccupied by the belief/s. Generally the beliefs are of things that may be possible, such as:
· Related terms include conjugal paranoia, Othello syndrome, and pathological or morbid jealousy.18,6
· The main theme of the delusions is that her or his spouse or lover is unfaithful. Some degree of infidelity may occur; however, patients with delusional jealousy support their accusation with delusional interpretation of “evidence” (eg, disarrayed clothing, spots on the sheets).1,4
· Patients may attempt to confront their spouses and intervene in imagined infidelity. Jealousy may evoke anger and empower the jealous individual with a sense of righteousness to justify their acts of aggression. Both the intimate partner and the (perceived) lover may be the targets of aggression and violence. This disorder can sometimes lead to acts of violence, including suicide and homicide.4
· Easton et al indicate that DSM-IV-TR criteria are not inclusive enough to diagnose this subtype. They looked at a database of 398 patients with a jealousy disorder and found that only 4% met diagnostic criteria for delusional disorder-jealous type.21
o Most common type of delusional disorder.19,22
o Most commonly associated with comorbid Axis 1 disorders.23
o Patients believe that they are being persecuted and harmed.4
o In contrast to persecutory delusions of schizophrenia, the delusions are systematized, coherent, and defended with clear logic. No deterioration in social functioning and personality is observed.2
o Patients are often involved in formal litigation against their perceived persecutors. Munro3refers to an article by Freckelton who identifies the following characteristics of deluded litigants: determination to succeed against all odds, tendency to identify the barriers as conspiracies, endless drive to right a wrong, quarrelsome behaviors, and “saturating the field” with multiple complaints and suspiciousness.3
o Patients often experience some degree of emotional distress such as irritability, anger, and resentment.4 In extreme situations, they may resort to violence against those who they believe are hurting them.1
o The distinction between normality, overvalued ideas, and delusions is difficult to make in some of the cases.4
· Being conspired against; cheated; spied on; followed; subject to malicious gossip; harassed; under threat; or poisoned. These may result in escalating complaints to police, government etc.
· Related terms include erotomania, psychose passionelle, Clerambault syndrome, and old maid’s insanity.2,4,5
· The central theme of delusions is that another person, usually of higher status, is in love with the patient. The object of delusion is generally perceived to belong to a higher social class, being married, or otherwise unattainable.3,5
· Patients with this type of delusion are generally female, although males predominate in forensic samples.1,5
· Delusional love is usually intense in nature. Signs of denial of love by the object of the delusion are frequently falsely interpreted as affirmation of love.2,5
· Patients may attempt to contact the object of the delusion by making phone calls, sending letters and gifts, making visits, and even stalking. Some cases lead to assaultive behaviors as a result of attempts to pursue the object of delusional love or attempting to “rescue” her/him from some imagined danger.1
· Patients believe that they possess some great and unrecognized talent, have made some important discovery, have a special relationship with a prominent person, or have special religious insight.1
· Grandiose delusions in the absence of mania are relatively uncommon, and the distinction of this subtype of disorder is debatable. Many patients with paranoid type show some degree of grandiosity in their delusions.4
· Grandiosity in narcissistic personality disorder is by definition nonpsychotic and not directly related to an elevated mood state, as in bipolar disorders. Narcissistic patients will concurrently show a lack of empathy, exploitive behavior, and a sense of entitlement in addition to grandiosity.
o Related terms include mono-symptomatic hypochondriasis.4
o The core belief of this type of disorder is delusions around bodily functions and sensations. The most common are the belief that one is infested with insects or parasites, emitting a foul odor, parts of the body are not functioning, the belief that their body or parts of the body are misshapen or ugly, and the reduplication of body parts.1,12
o Patients are totally convinced in physical nature of this disorder, which is contrary to patients with hypochondrias is who may admit that their fear of having a medical illness is groundless.2
o Patients are usually first seen by dermatologists, cosmetic surgeons, urologists, gastroenterologists, and other medical specialists.4
o Sensory experiences associated with this illness (eg, sensation of parasites crawling under the skin) are viewed as components of systemized delusions.4
o This must be distinguished from bizarre somatic delusions occasionally seen in schizophrenia (eg, a delusion that a colony of lobsters is living in the patients stomach)
o Patients exhibit more than one of the delusions simultaneously4 , and no one delusional theme predominates.1
o The patient usually does not have comorbid Axis 1 disorders.23
o Delusional themes fall outside the specific categories or cannot be clearly determined.1
o Misidentification syndromes such as Capgras syndrome (characterized by a belief that a familiar person has been replaced by an identical impostor) or Fregoli syndrome (a belief that a familiar person is disguised as someone else) fall into this category. Misidentification syndromes are rare and frequently are associated with other psychiatric conditions (eg, schizophrenia) or organic illnesses (eg, dementia, epilepsy).4
o Another unusual syndrome is Cotard syndrome, in which patients believe that they have lost all their possessions, status, and strength as well as their entire being, including their organs.4Described first in the 19th century, it is a rare condition, which is usually considered a precursor to a schizophrenic or depressive episode.2
Regarding the many other theories of delusions, a comprehensive review concluded, “In sum, despite large numbers of explanation and theories on delusional thinking, there is no agreed upon conceptualization or general model concerning their nature and very few theories enjoy empirical support” (Winters and Neale, 1983). A more recent appraisal (Roberts, 1992) was even more blunt: “Although delusion remains one of the basic problems in psychopathology, attempts to understand its pathogenesis have been dominated by unsubstantiated speculation.”
Degrees of Delusional Disorder (DD)
· Mild DD
· Moderate DD
· Serious DD
· Severe DD
· Very severe DD
Most family members could not get the person with DD for treatment because the person does not think he is sick and he does not want help.
The prevalence of delusional disorder in the United States is estimated in the DSM-IV-TR to be around 0.03%1 , which is considerably lower than the prevalence of schizophrenia(1%) and mood disorders (5%).6
Some studies indicate that delusional disorder accounts for a surprising 2 to 8 percent of inpatient psychiatric admission for “functional psychosis.”
Since the number of DD in inpatient psychiatric institutions are small, there are relatively very few large scale scientific studies and reports. Although the numbers of people with DD are large in the world as seen in the Delusional Disorder Forum (see http://www.psychforums.com:80/delusional-disorder/), many clinicians are relatively ill-informed about DD.
Despite advances, clinicians are relatively ill-informed about delusional disorders and many have only seen an occasional example. There are several possible reasons why this is so. Persons with this condition do not regard themselves as mentally ill and actively oppose psychiatric referral. Because they may experience little impairment, they generally remain outside hospital settings, appearing reclusive, eccentric, or odd, rather than ill.
Because delusional disorders are uncommon, idiopathic, and possess features characteristic of the full range of paranoid illnesses, differential diagnosis has a clear-cut logic: delusional disorder is a diagnosis of exclusion.
Diagnostic Criteria for Delusional Disorder
A. Non-bizarre delusions (i.e., involving situations that occur in real life, such as being followed, poisoned, infected, loved at a distance, or deceived by spouse or lover, or having a disease) of at least 1 month’s duration.
B. Criterion A for schizophrenia has never been met. Note: Tactile and olfactory hallucinations may be present in delusional disorder if they are related to the delusional theme.
C. Apart from the impact of the delusion(s), or its ramifications, functioning is not markedly impaired and behavior is not obviously odd or bizarre.
D. If mood episodes have occurred concurrently with delusions, their total duration has been brief relative to the duration of the delusional periods.
E. The disturbance is not due to the direct physiological effects of a substance (e.g., a drug of abuse, a medication) or a general medical condition.
How Is Delusional Disorder Treated?
1. Psychosocial Treatments
Treatment for delusional disorder most often includes medication and psychotherapy (a type of counseling). Delusional disorder is highly resistant to treatment with medication alone.
Psychotherapy is often used either alone or in combination with medications to treat mental illnesses. Called “therapy” for short, the word psychotherapy actually involves a variety of treatment techniques.
Psychotherapy is the primary treatment for delusional disorder, including psychosocial treatment which can help with the behavioral and psychological problems associated with delusional disorder. Through therapy, patients also can learn to control their symptoms, identify early warning signs of relapse, and develop a relapse prevention plan.
One of the hardest psychiatric disorders both to diagnose and treat is delusional disorder. The reason why diagnosis can be tricky is that the person is often functioning quite normally in the world. The delusions in this disorder are non-bizarre, meaning they can actually be plausible even if they’re not true. Those suffering from this disorder often won’t believe they have a problem, so it’s difficult to get them into therapy. Treating this disorder requires a great deal of tact and careful treading, but a trusting doctor-patient relationship can make success possible.
For most patients with delusional disorder, some form of supportive therapy is helpful. The goals of supportive therapy include facilitating treatment adherence and providing education about the illness and its treatment.
Cognitive approaches have attempted to reduce delusional thinking through modification of the belief itself, focusing on the associated reasoning or the reality testing of the deluded patient. The effectiveness of cognitive and behavioral therapies has not been studied enough to justify recommendation
Cognitive therapeutic approaches may be useful for some patients and this is best studied in persecutory type.
It is unlikely that there is any psychiatric condition that requires greater diplomacy, openness, and reliability from the therapist. Considerable skill is required to deal with the profound and intense feelings that accompany these disorders.
Somatic treatment is difficult to implement on two levels—The patients’ insistence on lack of psychiatric problems may be an insurmountable barrier to initiating treatment, and their sensitivity to all adverse effects may constitute an additional frustrating factor in their care.
DD will adamantly avoid treatment but DD will not go away by itself. They do not believe anything is wrong with them. Getting them to the right doctor is perhaps the key in getting the right diagnosis, thereby getting perhaps the right medication.
2. Treatment with Drugs
Medically, only a few current treatments have an effect on delusional disorder; therefore, the primary type of treatment will be psychosocial. And the best treatments will be indirect, with the therapist perhaps offering depression and anxiety panic treatments instead, since those may also be symptoms of the disorder. The worst thing a therapist can do for a paranoid, suspicious patient is confront them directly about their delusions. They need time to build up some trust, and only then would the doctor begin gently challenging a few of the patients’ beliefs.
Drugs should only be used if the patients’ delusional disorder was becoming dangerous or the condition was making them too agitated.
Reviews of treatment of delusional disorder have not systematically addressed the question of what particular dose of antipsychotics is needed to achieve remission of symptoms. However, a study of 11 patients with delusional disorder appeared to be adequately treated on fairly low doses of antipsychotic (4.7 mg of haloperidol).14
Recent observations of successful treatment with pimozide (Orap) in several subtypes of delusional disorders suggest the possibility of a common pathogenetic mechanism in these disorders. Data from treatment reports on delusional disorder suggest that pimozide (Orap) a highly specific dopamine-blocking agent, has greater effectiveness than typical antipsychotic drugs in this condition; some data even suggest that it has a unique role. There are several pharmacological effects of pimozide.
The impression is growing that antipsychotic drugs are effective, and a trial, especially with pimozide or a serotonin-dopamine antagonist is warranted. Certainly, trials of antipsychotic medication make sense when the agitation, apprehension, and anxiety that accompany delusions are prominent.
The primary drugs used to attempt to treat delusional disorder are called anti-psychotics. Medications used include the following:
Conventional anti-psychotics: Also called neuroleptics, these have been used to treat mental disorders since the mid-1950s. They work by blocking dopamine receptors in the brain. Dopamine is a neurotransmitter believed to be involved in the development of delusions. Conventional anti-psychotics include Thorazine, Prolixin, Haldol, Navane, Stelazine, Trilafon, and Mellaril.
Atypical anti-psychotics: These newer medications appear to be more effective in treating the symptoms of delusional disorder. They work by blocking dopamine and serotonin receptors in the brain. Serotonin is another neurotransmitter believed to be involved in delusional disorder. These drugs include Risperdol, Clozaril, Seroquel, Geodon, and Zyprexa.
Other medications: Tranquilizers and antidepressants might also be used to treat delusional disorder. Tranquilizers might be used if the person has a very high level of anxiety and/or problems sleeping. Antidepressants might be used to treat depression, which often occurs in people with delusional disorder.
The newest medication available that block dopamine is Abilify with a very low percentage of side effects.
The long-term use of older ‘typical’, and even the newer and safer ‘atypical’, antipsychotic drugs used to treat delusions is particularly dangerous. In a signiﬁcant fraction of patients these treatments cause serious side eﬀects like parkinsonism, and even irreversible brain damage, such as tardive dyskinesia: repetitive, involuntary, purposeless movements (Bagnall et al., 2003). If delusions are functional, they are not illnesses, so the use of antipsychotic drugs to suppress them would require additional ethical considerations; new approaches to alleviate suﬀering would also be conceivable.
It appears that some of the drugs help some patients; but the same drugs are ineffective with others. There are no ways to reliably predict which medication will work best for a person with the least side effects. It is a matter of making a best guess and using a trial and error approach.
3. Resistant to medications and therapeutic interventions
The current understanding of delusional disorder, however, is limited by scarce scientific data that mostly consist of individual case descriptions or small uncontrolled case studies, which are therefore difficult or impossible to duplicate.
Delusional disorder is difficult to treat and often resistant to medications and therapeutic interventions. Since the patient is frequently noncompliant with treatment, this compounds the treatment difficulties.
Noncompliance continues to be a frequent observation in published clinical studies. An open and clear approach to warn patients about and to assist them through possible unpleasant experiences is essential. As most of the difficulty of this disorder results from the effects of the patient’s actions concerning the delusions, any preventive approach in that domain has considerable value.
Fundamental to the success is an effective and therapeutic doctor-patient relationship, which is far from easy to establish. The patients do not complain about psychiatric symptoms and often enter treatment against their will.
Enormously disruptive to suﬀerers and their families, delusions are among the most diﬃcult psychiatric conditions to treat.
Delusional disorder has generally been regarded as resistant to treatment and interventions have often focused on managing the morbidity of the disorder by reducing the impact of the delusion on the patient’s (and family’s) life.
Books that may Help
1. I’m Not Sick, I Don’t Need Help by Xavier Francisco Amador;
2. When Someone You Love has a Mental Illness by Rebecca Woolis;
3. Full Catastrophe Livingby Jon Kabat-Zinn
4. The Four Things That Matter Most: A Book About Living by Ira Byock
5.Just Like Someone Without Mental Illness Only More So: A Memoir by Mark Vonnegut
6.The Center Cannot Hold: My Journey Through Madness by Elyn R. Saks
7. Delusional Disorder: Paranoia and Related Illnesses by Alistair Munro
8. The Outsider: A Journey Into My Father’s Struggle With Madness by Nathaniel Lachenmeyer
9. Time to Be in Earnest: A Fragment of Autobiography by P.D. James
10. Never Have Your Dog Stuffed: And Other Things I’ve Learned by Alan Alda
11. Why Zebra’s Don’t Get Ulcers by Robert Sapolsky
“Do not question or discuss the details of delusional statements in any depth. Do not try to convince or argue people out of a delusion. It won’t work.
Do not tell people that what they are saying is crazy, delusional, or untrue—unless that is specifically asked of you. Even then, do so with caution.
If your relative is calm, listen neutrally, calmly, and respectfully. Then do any or all of the following:
1. Respond to any non-delusional remarks that have been made.
2. Lead the conversation away from the delusional content.
3. Explicitly, but non-judgmentally, express you desire to change the subject.
If your relative insists on your making a comment about the delusional material, you can:
1. Say you don’t know or hedge.
2. Acknowledge the person’s reality and, being as respectful of his or her opinion as you are of your own, explain that there is an honest difference of opinion or perception between you.
If strong feelings accompany the delusions, you can:
1. Acknowledge or address the emotions (fear, anger, anxiety, sadness) without commenting on the delusion.
2. Offer assistance in coping with the feelings—for example, you can ask, “What can you or I do to help you feel safer?” “