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The Family and the Dually Diagnosed Patient
Authors: Kathleen Sciacca, M.A. Agnes B. Hatfield, Ph.D. Authors' bios: Kathleen Sciacca, M.A., is the Founding Executive Director of Sciacca Comprehensive Service Development for Mental Illness, Drug Addiction and Alcoholism (MIDAA)(R), Dual Diagnosis - Co-occurring Disorders. She is the author of the MIDAA Service Manual: A Step by Step Guide to Integrated Treatment, Program Development and Services for Dual/Multiple Disorders. She is a nationally known program developer, trainer, consultant, and lecturer. Ms. Sciacca can be reached at: 212-866-5935. Agnes B. Hatfield, Ph.D., is Professor Emeritus of the University of Maryland. She is the author of Family Education and Mental Illness, and a co-author with Harriet Lefley of Surviving Mental Illness: Stress, Coping and Adaptation. She is a Founding Member and Former President of the National Alliance for the Mentally Ill (NAMI). From: Lehman, AF, Dixon LB (ed). "Double Jeopardy: Chronic Mental Illness and Substance Use Disorders," Gordon and Breach Publishers, Chapter 12, 1995. People who have multiple disorders of severe mental illness, drug addiction and alcoholism "dual diagnosis" have the same severity of addictive disorders as do people who have addictive disorders alone. They also experience exacerbation of both their mental illness and their addictive disorder due to interaction effects. Their families experience the disruptions evoked by addictive disorders alone. This is in addition to the stressors of coping with a serious mental illness. Although many studies (Hatfield, 1990; Lefley,1987; Marsh 1992) have shown that families of mentally ill relatives, in general, report enormous amounts of stress due to mental illness, there are few studies that have looked at the added burden due to substance abuse problems. One study (Kashner, Rader et.al. 1991) reported that substance abuse contributes to family conflict, erodes social support, and generates high levels of expressed emotion, thus disturbing the vitally needed caregiving network. A dually diagnosed individual can throw the best of families off balance. Therefore, it is important to provide services for families. Our divided systems of care for mental illness, drug addiction and alcoholism include our educational programs and clinical training. As a result, there are serious gaps in services for the dually diagnosed (Ridgely, Goldman & Willenbring,1990), and for their families. This has also effected the development of advocacy groups. One example, is the "National Alliance for the Mentally Ill" (NAMI). NAMI is an advocacy group that began from grass roots movements of families with mentally ill relatives in the 1970's and has since grown to over 1,000 local chapters (Grosser, Vine, 1991: pp.282-290). The "family movement" has a strong influence on research and treatment of individuals with severe and
persistent mental illness (U.S.News and World Report, 1989). However, as recently as 1984 when pioneer programs were developed for the treatment of persons with mental illness and substance disorders in the psychiatric facilities (Sciacca, 1987), many family members accepted a mental health system and a substance abuse system that did not address their relative's addictive disorders. In a recent national survey of family perspectives on meeting the needs of people with mental illness conducted by NAMI (Steinwachs, Kasper, and Skinner,1992) 18 per cent of the respondents indicated that getting drunk or using drugs occurred in their families. Of these families 62 per cent found this a serious problem. It is important to note that the 18 per cent substance abuse reported in the NAMI study is a much smaller prevalence rate than most other studies report. For example the Epidemiologic Catchment Area (ECA) study conducted by the National Institute of Mental Health (Reiger,Myers,et.al.1984) found that 47% of individuals with a diagnosis of schizophrenia or schizophreniform disorder were abusing drugs. In a national survey conducted by the Alcohol, Drug Abuse and Mental Health Administration (ADAMHA) (Ridgely,Osher,& Talbot,1987), it was reported that at least 50 per cent of the 1.5 to 2 million Americans with severe mental illness abuse illicit drugs or alcohol as compared to 15 per cent of the general population. The lower rate reported in the NAMI study may be explained in one of several ways. Members of NAMI are not fully representative of all families with mentally ill relatives. It is possible that there is less substance abuse in their relatives. It is equally possible that families see the mental illness as the primary source of disturbance and overlook the substance abuse. Some families may not be able to distinguish problems due to mental illness from those due to substance abuse. Still others may deny the problem out of shame, guilt or embarrassment. A growing awareness of the problems and some solutions to the provision of treatment of persons who are dually diagnosed is under way. Much has been written about the problems of substance abuse among mentally ill patients. These patients have been characterized as systems misfits with poor outcome, more relapses, more acting out behavior, and more likelihood of being homeless (Minkoff and Drake,1991). Dually diagnosed patients experience interaction effects that compound their distress and disability (Evans and Sullivan 1991). These patients tend to respond to their distress by exhibiting highly disturbing acting-out behaviors (McCarrick, Manderschied, et.al. 1985) Despite these serious consequences, the family movement has not attained the degree of knowledge about addictive disorders as they have about mental illness. There is a need for education that demonstrates that addictive disorders are illnesses. Understanding mental illness as a disease that is not caused by families was necessary to successful advocacy for the mentally ill. The same advocacy must happen for those who are dually diagnosed, through a clear understanding of the addictive disorders. Families of the dually diagnosed continue to experience frustration resulting from a service delivery system that does not meet their needs, or the needs of their relatives. The purpose of this chapter is to discuss some of the issues and problems, and to outline a model program "MICAA-NON" for families of the dually diagnosed. We will begin by clarifying some of the areas that effect the delivery of services. Next we will report on our family survey, the
Maryland study, which provides a family perspective of the issues. This will be followed by an outline of a pioneer program and some assessment considerations. ISSUES THAT IMPEDE SERVICES FOR THE DUALLY DIAGNOSED AND FAMILIES. Both families and providers encounter difficulty in accessing comprehensive services for the dually diagnosed. The underlying issues are the same nationally. They include: 1. Divided bureaucracies across discrete disorders, mental illness, drug addiction and alcoholism and segregated admissions criteria, treatment programs, services, and reimbursement; 2. Providers are educated and trained to deliver services for singular disorders, and are not prepared to provide services for unfamiliar symptoms (Ridgely, Goldman,& Willenbring,1990); and, 3. Treatment approaches across these discrete disorders are different in method and philosophy and are in direct contrast and incompatible (Sciacca,1991). The more impermeable issues are the contrasting treatment methods used by providers in the different fields. Traditional treatment methods for drug addiction and alcoholism are usually intense and confrontational. They are designed to break down the patient's denial or resistance of his or her addictive disorder. Admissions criteria to substance abuse programs usually require abstinence from all illicit substances. Potential patients are expected to be aware of the problems caused by substance abuse, and motivated to receive treatment. In some programs the use of medication unacceptable. This automatically excludes people who take prescribed medication for their symptoms of mental illness. In contrast, treatment methods used for serious mental illness are supportive, benign and non-threatening. They are designed to maintain the patient's defenses which are often fragile to begin with. Criteria for admission into mental health services rarely require that patients are aware of their substance abuse problems and motivated to accept substance abuse treatment. Patients entering the mental health system are generally not seeking treatment for their substance abuse problems. Within the mental health system we encounter patients who actively abuse drugs and alcohol, and deny such use. Respondents in our Maryland study selected denial of the problems of substance abuse (77 %) as the most problematic behavior they encountered in their dually diagnosed relative (see table I). These differences perpetuate the gaps in services and eliminate the dually diagnosed from existing services. The traditional substance abuse services will not accept patients who have a serious mental illness either because they do not meet the readiness criteria, or because they are not prepared to provide services for symptoms of mental illness. If accepted into a substance abuse program that is not modified, the dually diagnosed patient may experience difficulty when participating in an intense, confrontational program. Traditionally, the mental health system attempts to eliminate the dually diagnosed patient on the basis of substance abuse at the point of admission. For patients within the system, services are interrupted or terminated on the basis of rules that address addictive behaviors. Families who do not understand the addictions as disorders will accept these determinations. Without knowledge of the necessity of professional treatment, family members are not likely to perceive their relative's entitlement to addiction treatment. The result is frustration and hardship for families who bear the burden of caring for a relative who does not receive the benefits of professional help, or the pain and fear involved when a family can no longer provide primary care. In such cases, their relative loses the support of both the family and service systems. Community residences and other alternative living
programs for the mentally ill eliminate the dually diagnosed patient using the same criteria to screen out substance abusers. These program options are rarely accessable. These differences perpetuate the gaps in services and eliminate the dually diagnosed from existing services. The traditional substance abuse services will not accept patients who have a serious mental illness either because they do not meet the readiness criteria, or because they are not prepared to provide services for symptoms of mental illness. If accepted into a substance abuse program that is not modified, the dually diagnosed patient may experience difficulty when participating in an intense, confrontational program. Traditionally, the mental health system attempts to eliminate the dually diagnosed patient on the basis of substance abuse at the point of admission. For patients within the system, services are interrupted or terminated on the basis of rules that address addictive behaviors. Families who do not understand the addictions as disorders will accept these determinations. Without knowledge of the necessity of professional treatment, family members are not likely to perceive their relative's entitlement to addiction treatment. The result is frustration and hardship for families who bear the burden of caring for a relative who does not receive the benefits of professional help, or the pain and fear involved when a family can no longer provide primary care. In such cases, their relative loses the support of both the family and service systems. Community residences and other alternative living programs for the mentally ill eliminate the dually diagnosed patient using the same criteria to screen out substance abusers. These program options are rarely accessable. Working with patients who deny substance abuse, who are unmotivated for substance abuse treatment, and are unable to tolerate intense confrontation, requires a new model of treatment. Sciacca developed a "non-confrontational" approach to the engagement and treatment of the dually diagnosed. The treatment model first developed by Sciacca in 1984 (Sciacca, 1987) is based upon non- judgmental acceptance of all symptoms and experiences related to both mental illness and substance abuse. The phase by phase interventions from "denial" to "abstinence" (Sciacca, 1991) begins by assessing the patient's readiness to engage in treatment (Sciacca, 1990). Readiness levels are accepted as starting points for treatment, rather than points of confrontation or criteria for elimination. These programs (MICAA treatment groups) are implemented as components of existing mental health, or substance abuse programs, "Integrated Treatment." They have been adapted to a wide variety of services including short- and long-term inpatient units, acute care services, outpatient clinics, day treatment programs, continuing care programs, case management services, community residences, shelters, and clubhouse models of service (Sciacca, 1987b). A FAMILY PERSPECTIVE ON DUAL DIAGNOSIS. THE MARYLAND STUDY: With little or no data available on how families view the problem of substance abuse and mental illness, we asked families in the Maryland Alliance for the Mentally Ill who had such a problem to complete a brief survey. While the number of usable responses was limited to 22, we have decided to use those responses along with published information on the subject to suggest family problems and needs. The dually diagnosed individuals identified in this study were male (77%) and in their twenties and thirties (68%). This conforms to other studies (Cuffel, Heithoff, and Lawson 1993:250)
indicating that substance abusers tend to be young and male. Their diagnosis were nearly split between schizophrenia and affective disorder. They most often lived in their own homes or apartments (50%) or in the homes of their families (32%) with only one person living in a community residence. Most of the patients became mentally ill in their teens (41%) or in their twenties (32%). As in other recently reported research (Cuffel, Heithoff, & Lawson,1993:250) it appeared that often the substance abuse problem preceded the mental illness. The abused substance was given as alcohol in about half the cases, and the other half were given as poly substance abusers. Street drugs named most often were cocaine and marijuana, but also PCP, heroin, LSD, and crack were used. Prescription and over-the-counter drug abuse was also noted. A large percentage (73%) of the alcohol users have had a problem for over ten years; somewhat fewer of the street drug users (54%) have been involved for more than ten years. Consequences of Substance Abuse The effect of substance abuse on the individual and on the family are invariably very severe. A recent summary of research on the consequences of abuse (Drake, McLaughlin, et.al.1991:6-7) indicate that there is more verbal hostility, disruptive behavior, aggression, poorer management of personal affairs, and home-lessness. These individuals have more severe symptoms, more suicidal behavior, and more treatment noncompliance and more often wind up in institutions or jail. Families in the Maryland study were asked to identify the behavior problems and increased symptomatology they believed were due to substance use. These were summarized in Table I. It is important in interpreting this table to recognize that some families noted that it was hard to separate problems due to substance abuse from those due to mental illness. -------------------------Table I here A large majority of families (77%) found the tendency to deny the problem and money problems (77%) troublesome to them. Well over half (59%) indicated that legal difficulties, blaming others, and being argumentive were very troublesome behaviors and nearly as many (55%) were concerned about decline in health and loss of jobs. When asked which problems were the most troublesome the clear response was denial of the problem and decline in health. These, then, are the areas with which families will need help from providers. Respondents said that rehospitalization was required for 88% of their relatives and that 77% had acute symptoms of mental illness evoked by their alcohol or drug use. The symptoms most often mentioned were: Depression (59%); Suicidal ideation (59%); Voices (55%); Violence (36%); Visual hallucinations (23%); and, Blackouts (23%). It must be very puzzling to families as to why their mentally ill relative continues to use drugs and alcohol when the consequences are so severe. Their frustration at this added burden must be enormous. Reasons for Substance Abuse Problems Some authorities (Cuffel, Heithoff, & Lawson,1993:250) suggest there might be a number of reasons for substance abuse in mental illness --self medication, negative affective states, impaired cognition, and poor self-esteem. Users of these substances say they do so to relieve boredom, depression and anxiety, and to facilitate social contact. Other authorities (Drake,
McLaughlin, et.al.1991:5) suggest that downward drift as well as self medication and facilitation of social contact are reasons for substance use. They emphasize, however, that we really don't know the etiology of these problems and that we should consider substance abuse as an independent and autonomous problem rather than a secondary disorder. Although it may not be possible to know the etiology of substance abuse in a reliable way, it is important to know what families believe is the case because it may influence the way they respond to their relative's problem. Families in the Maryland study were asked to check as many reasons for substance abuse as applied to their relative. Table II summarizes their responses. ______________________ Table II here It is interesting to note that most families (68%) feel that self medication is the reason (or one of the reasons) for their relative's reliance on alcohol and/or drug use. Just over half (55%) see substance abuse as a disease that needs treatment and 55 per cent feel that one explanation lies in an underlying psychological problem. Boredom and the search for a social life are given as further reasons. Only one respondent felt that substance abuse was evidence of weak character. Treatment Used and Their Effectiveness An important objective of the Maryland study was to determine what treatments for substance abuse families found available to their dually diagnosed relatives and how well they were working. This was difficult to do in this study. Only 68 per cent had ever been treated for substance abuse disorders and the treatments used were very varied. Some people had been exposed to a variety of approaches, some only one or two, and nearly a third had no treatment. This confirms the findings of Sciacca in New York (Sciacca,1991:69) that a large percentage of those in psychiatric care never received treatment for substance abuse and the rest had only minimal care. Table III shows the most frequently used services in the Maryland study and how families rated there effectiveness. ____________________ Table III here The most often used services, used by half the dually diagnosed in this study, were group therapy and Alcoholics Anonymous/Narcotics Anonymous (A.A./N.A.). While both were rated as fair or good in effectiveness, the clear winner was A.A./N.A.. Although used less often (36%) individual therapy was seen as having equal effectiveness to group therapy. Detoxification was rated as effective, but as one respondent noted it was only of temporary value. What is of most interest for the purposes of this chapter was that while only 36 per cent of families were involved, all of them rated the effectiveness of this involvement as fair or good. This supports the recommendations of a number of authorities (Sciacca:1991:81; and Evans and Sullivan 1990:129) that families should receive special services or be included in the treatment. Special Services Needed It is important to learn from families who are in a position to observe their relatives over time and to note their reactions to various treatments, what special services they feel are needed for this population. Table IV shows the responses of the Maryland families.
_______________________ Table IV here Families feel the need for special outpatient services for this group (82%) much more than the do inpatient (39%). Over half the group feel that special crisis intervention, special self help groups, and special residences need to be available. Of interest to us was the need expressed for special family support groups (64%). This confirms the empirical findings that led to the development of MICAA-NON a model program for families of the dually diagnosed. Services for families of the dually diagnosed are an important compliment to the MICAA patient treatment process. Prior to, and apart from our Maryland study, numerous families reported devastating experiences stemming from their efforts to access services, and from the stressors of caring for a dually diagnosed relative (Sciacca, 1989). Traditional twelve step programs for family members of alcoholics, Al-Anon, often do not meet the needs of a family whose relative also has a mental illness. Concepts such as "hitting bottom" (Al-Anon,1984:9) are not easily acceptable to families of the dually diagnosed. For a dually diagnosed person, hitting bottom may result in decompensation into acute symptoms, deterioration of functioning, loss of supports, and hospital- ization. In MICAA treatment patients are maintained at their present stable level, and progress in substance abuse treatment proceeds from there (Sciacca, 1991). Families also fear the potential dangers involved in "putting their relative out on the street," which may be construed as a necessary action for families of addicted individuals. Programs such as Al-Anon evolved in response to discrete disorders, in this case, alcoholism. They are not comprehensive, and do not address mental illness or the interaction effects of mental illness and substance disorders. There is a gap in learning and understanding for families of the dually diagnosed. When traditional supports and services are not sufficient, families of the dually diagnosed rely upon the mental health system for support. Presently, there are few services within that system to address their needs. Alliance for the Mentally ILL (AMI) chapters include families of the dually diagnosed, here they usually constitute a less cohesive sub-group. As a result, many chapters do not provide specialized supports. Families who belong to AMI should continue to do so. Programs for families of the dually diagnosed are additional specialized supports, not replacements for the broader range of benefits provided by AMI. At the national and several statewide levels NAMI does address the issues of the dually diagnosed (Hatfield, 1992). This includes efforts to educate all of the membership. MICAA-NON, EDUCATION AND SUPPORT FOR FAMILIES. Without the development of specialized services for dually diagnosed patients there is virtually no consideration given to the special needs of their families. As an outgrowth of the attention given to the treatment needs of the patients, the serious needs of their family members came the fore. As a model family program was developed, it paralleled the intervention process adapted to dually diagnosed patients in several important ways. Initially, a patient in denial is engaged to participate in a psycho-educational group where he or she may learn about substance disorders (Sciacca, 1991). Providers trained to work with patients at this phase create a non-threatening environment and employ interventions that foster trust
among the leader and the group members. When patients recognize that it is safe to discuss one's own use of substances, progress has been made along the continuum. They move from denial of substance use, to openly discussing their use of substances in a supportive environment. Interventions necessary to assist the client to the next step of readiness or recovery are continually employed. For example, a patient who has reached the point of readiness to discuss his or her substance use may deny any negative consequences. Through concerned exploration and education about the effects of substance abuse, the patient is assisted along the continuum to recognize specific problems and interaction effects with mental illness. This process continues until abstinence, the goal, is achieved. Specific education about mental illness and substance abuse is essential to this treatment process (Sciacca, 1991). MICAA-NON began in 1987 (Sciacca, 1989) in an effort to educate families about mental illness, drug addiction and alcoholism. It began with presentations at local AMI chapters. Chapter presidents forewarned that many members were resistent toward openly discussing substance abuse issues. As a result, educational meetings were offered as a follow up to presentations, rather than support groups. The engagement process used with dually diagnosed patients is applied here. Participants need not disclose information about their dually diagnosed relative. Interest in learning about the addictive disorders and interaction effects with mental illness is the only prerequisite. The first MICAA-NON meetings included some families who were not ready to discuss their relative's substance abuse, and other families who did so openly. Family members had tales of isolation, disrupted lives, uncertainty as to where to go for help. They clearly lacked a forum to discuss these problems. Families reported having their input ignored while treatment was administered to their relative that did not account for the substance abuse problem. Similar reports were given by families who attended presentations at statewide AMI, and national NAMI conferences. Frequently these were initial disclosures of experiences that had long been harbored in silence. Empirically, this confirmed the extent of the need for education and support for families of the dually diagnosed. MICAA-NON Program Outline MICAA-NON groups require the leadership of an informed provider who can assist families to acquire services and develop networks from limited resources. When developing programs for MICAA treatment services, some agencies extend their services to include a MICAA-NON program. Staff members in training at such agencies learn to lead family meetings under supervision (Sciacca, 1991). This enhances their educational experience. Through educating and learning from families they gain insight into the broader network and experiences of their dually diagnosed patients. They understand the family and the patient as a system and learn new ways to work together. As the plight of the family unfolds, providers begin to let to of outworn theories of families as causal to mental illness (Lefley,1987:1066). Instead, they recognize the support families provide, often under extremely adverse conditions. Thus far MICAA-NON groups have not been developed for profit. When a group begins it is open to all families throughout the community. Participants need not have a patient in treatment
at the sponsoring agency. Many families who do attend have the presenting problem of a relative who either refuses, or is unable to access appropriate treatment. Groups include multiple families. They do not usually include the dually diagnosed patient. Meetings are usually held in the evening. They are held weekly, bi-monthly or monthly as decided by members. They last approximately one and one-half to two hours. Group size is from three to twelve participants. Outreach is very important to the formation of groups, and for sustaining membership. Programs that begin with a presentation at a local AMI chapter or other family programs start out with a general overview of the disease concepts of mental illness, drug addiction and alcoholism. Participants are given the opportunity to sign up to attend additional educational meetings. They are notified of the details of each meeting in writing and by telephone the day of the meeting. Flyers and notices are strategically sent to reach as many agencies, and family members as possible. Notices are placed in local newsletters. New members may join at any time. Participants are encouraged to invite other families, as well as additional members of their own family. MICAA-NON Program Content: The content of the meetings includes both support and education. Following introductions, participants share in an open forum of discussion. Usually, at least one member will discuss a personal issue. The leader and the group members explore the issue and attempt to find solutions. Participants are not pressured to discuss their relative. Denial and resistance unfold gradually with the development of trust. Non-judgmental support and education lead to understanding and open participation as family members learn some of the causes and cures of mental illness and substance disorders. This process parallels engagement and interventions developed for patient groups. Emphasis is placed upon understanding discrete, multiple disorders, versus seeing dual disorders as causal. Some people believe that their relative drinks alcohol or uses drugs because he or she is mentally ill. This leads to seeking help for the mental illness alone with the expectation that the addiction will simply clear up. Others are uncertain that their relative has a mental illness and may perceive drinking and drug use as the cause of symptoms. Another common belief is that drinking or drug use as a leisure activity is the best quality of life a person with a severe mental illness can expect. Family members are taught the necessity of treatment, support, and relapse prevention for each disorder. The supportive nature of the group process includes assisting each participant to consider his or her own well being and separateness. As participants discuss their situations, leaders assist them to consider their personal well being. Group members are encouraged to be supportive of one another, and to share their successes as well as their concerns. Through this process, participants learn the parameters of their ability to be helpful to the dually diagnosed. They learn to differentiate between their relative's need for appropriate services in contrast to frustrating interactions or efforts that do not have the potential for success. This provides options for families to consider as they choose how they will expend their energy and resources.
Educational Content: Each meeting includes educational content. Media such as videos, written materials, and guest speakers are used. Topics are addressed from many different perspectives and discussion from each member is encouraged. Some topics include: 1. The physio-logical aspects of the addictions, including effects upon brain chemistry; 2. Risk factors in mixing psychotropic medication with illicit substances; 3. Etiology of addictive disorders, including genetic research findings and reactive causes; 4. Tolerance levels and other addictive syndromes; 5. The parallels across addictive disorders and mental illness; 6. Treatment methods and recovery from addictive disorders; 7. Special treatment programs for the dually diagnosed, MICAA treatment; 8. Interaction effects of mental illness and addictive disorders; and, 9. The impact of addictive disorders upon the family system. It is most important for families to learn that the addictions are diseases that require treatment. Of particular importance is the understanding of the physical addictions. Without the knowledge that a relative is responding to a physical addiction, families and providers frequently view substance abuse as a behavior that can be changed at will. This results in unrealistic expectations and frustrating, disappointing inter-actions. ASSESSMENT OF FAMILIES Assessment of families is an ongoing process. The following are some areas that need to be explored during initial contacts, and continually updated throughout the entire process. 1. Assessment should include the readiness of the family to accept that their relative has an addictive disorder (and in some cases a mental illness), and the readiness of the patient to receive treatment. Interventions and content of the meetings will assist participants to reach the next step along the continuum of acceptance. Education about each disorder is directed toward dispelling stigma, shame, and guilt. Each of these areas parallel the process developed for patient groups. Discussions about the experiences families have in coping with or assisting their relative often validates the educational information, and the disease concepts. When the dually diagnosed relative is discussed, his or her readiness to engage in treatment is determined. 2. Of extreme importance is the assessment of the safety of all concerned. As noted earlier in this chapter, interaction effects of multiple disorders often result in suicidal behavior, violence or tendencies toward harming others. Physical cravings for illicit substances can lead to various inappropriate behaviors in order to obtain money to buy drugs. Violence in families of substance abusers who are not diagnosed with a mental illness is well documented (Gorney,1989:232; Gelles,Strauss,1988). As is true with substance abuse, people tend to minimize, rationalize, and deny violence due to stigma, fear, and shame (Gorney, 1989:232). In a survey of NAMI members 38 percent of the sample reported that their mentally ill relative was assaultive and destructive in the home either sometimes or frequently (Swan, Lavitt, 1986). Families in our Maryland study reported violence (36%) and suicidal ideation (59%) as acute symptoms evoked by substance abuse. In MICAA-NON groups, the unfolding of denial about assaultive and destructive behavior occurs in the same way that denial unfolds about other issues. In addition to the development of trust, participants learn from the media and from one another that these
behaviors are common and symptomatic. This helps to alleviate shame and guilt. Families will then reveal the degree of discomfort they experience when their relative is under the influence of alcohol or drugs. Some members will describe past physical altercations, or verbal threats. Leaders must consider whether or not there is an imminent danger. If there is, crisis intervention, hospitalization or alternative living arrangements may be recommended. Another body of literature on " Aging Parents as Caregivers of Mentally Ill Adult Children" (Lefley,1987b:1065-1070) is also representative of some family compositions of the dually diagnosed. With this family composition, the stressors may be manifold, and dangers more imminent. 3. Assessment of a physical addiction provides important information necessary to pursue an appropriate course of action. Questions about the dually diagnosed relatives's drug(s) of choice, frequency and quantity of use, and length of time used (Sciacca, 1990) will facilitate this assessment. Families with physically addicted relatives come to understand the limitations of willful change, and the treatment necessary for detoxification and recovery. Education about withdrawal effects, and neurochemical and nutritional depletion, are examples of information that helps families to understand the physical addictions. 4. It is important to explore the family's support network. This should include the quality of relationships between all family members; the identification of particular family members who provide support and caregiving; and the presence or absence of outside supports including the relationships between the family and providers to the dually diagnosed patient. Assisting family members to increase supports for the family and the dually diagnosed relative is a formative goal. Leaders may attempt to engage other family members to attend MICAA NON. Participants of MICAA-NON are encouraged to join their local AMI chapter. MICAA-NON meetings usually include members of AMI who will assist in engaging new AMI members. Al-Anon speakers are invited to speak at MICAA-NON meetings. They are asked to discuss their resolutions to relationships with addicted relatives, and to answer questions about Al-Anon. Attending Al-Anon meetings can provide additional support for participants who have learned the similarities and differences between the dually diagnosed and people with addictive disorders alone. Participants are encouraged to communicate with those who provide treatment to their dually diagnosed relative. This includes asking questions, and discussing their concerns. 5. It is important to assess the family history of addictive disorders. An assessment developed for MICAA patients (Sciacca, 1990) details the family history of substance abuse and the patient's history. This provides information necessary to determine the possibility of genetics involved in the addictive disorders, or reactive causes. The family dynamic of guarding information about family substance abuse, and experiences of betrayal when revealing it, exists for dually diagnosed patients and their families. As participants learn the symptoms of addictive disorders they may begin to question whether or not there is substance abuse among other family members.
Educating families about genetic research in alcoholism (Goodwin,1985:171 174) that utilize the same paradigms, and yield the same results as genetic research in schizophrenia (Torrey, 1983:82-84), is often easily understandable. Other parallels across mental illness and substance disorders include, treatments necessary to bring active symptoms into remission, the potential for relapse, and the need for ongoing support for continued remission for each disorder (Sciacca, 1991). Assisting families to recognize the addictions as a family disease, when relevant, can provide the clarity necessary to end years of misplaced blame and uncertainty. MICAA-NON groups are on-going, they continue for as long as the resources (leader, space, sponsoring agency) are available. Attention to the issues of dual diagnosis comes and goes as a priority in various states and communities. Advocacy sometimes consists of an individual family member who persistently tries to educate and influence entire bureaus, agencies, and other families (Sciacca, 1993). Successful efforts have resulted in presentations on the topic, and in some cases, education and training for providers in their communities. Efforts to develop services must include assisting families and patients to transition from experiences of frustration and uncertainty, to a stance of informed advocacy. This transition needs to take place for program administrators and providers across all services. Advocates for patients who are dually diagnosed must join together to form a cohesive group and a sustained effort to achieve the success NAMI has achieved in helping those who have a mental illness alone. REFERENCES:
Al-Anon Family Groups, Published by Al-Anon Family Group Headquarters, Inc., New York, N.Y., 1987.
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Copyright ©1996 Kathleen Sciacca
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