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CHAPTER 12
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 ServiceDevelopment 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 StepGuide to Integrated Treatment, Program Development and Services for Dual/Multiple Disorders.She is a nationally known program developer, trainer, consultant, and lecturer. Ms. Sciacca canbe reached at: 212-866-5935.Agnes B. Hatfield, Ph.D., is Professor Emeritus of the University of Maryland. She is the authorof Family Education and Mental Illness, and a co-author with Harriet Lefley of Surviving MentalIllness: Stress, Coping and Adaptation. She is a Founding Member and Former President of theNational Alliance for the Mentally Ill (NAMI).From: Lehman, AF, Dixon LB (ed). "Double Jeopardy: Chronic Mental Illness and SubstanceUse 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 addictivedisorders alone. They also experience exacerbation of both their mental illness and theiraddictive disorder due to interaction effects. Their families experience the disruptions evoked byaddictive disorders alone. This is in addition to the stressors of coping with a serious mentalillness. Although many studies (Hatfield, 1990; Lefley,1987; Marsh 1992) have shown thatfamilies of mentally ill relatives, in general, report enormous amounts of stress due to mentalillness, there are few studies that have looked at the added burden due to substance abuseproblems. One study (Kashner, Rader et.al. 1991) reported that substance abuse contributes tofamily conflict, erodes social support, and generates high levels of expressed emotion, thusdisturbing the vitally needed caregiving network. A dually diagnosed individual can throw thebest 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 oureducational programs and clinical training. As a result, there are serious gaps in services for thedually diagnosed (Ridgely, Goldman & Willenbring,1990), and for their families. This has alsoeffected the development of advocacy groups.One example, is the "National Alliance for the Mentally Ill" (NAMI). NAMI is an advocacygroup that began from grass roots movements of families with mentally ill relatives in the 1970'sand has since grown to over 1,000 local chapters (Grosser, Vine, 1991: pp.282-290). The "familymovement" 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 1984when pioneer programs were developed for the treatment of persons with mental illness andsubstance disorders in the psychiatric facilities (Sciacca, 1987), many family members accepteda mental health system and a substance abuse system that did not address their relative'saddictive disorders.In a recent national survey of family perspectives on meeting the needs of people with mentalillness conducted by NAMI (Steinwachs, Kasper, and Skinner,1992) 18 per cent of therespondents indicated that getting drunk or using drugs occurred in their families. Of thesefamilies 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 muchsmaller prevalence rate than most other studies report. For example the EpidemiologicCatchment 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 orschizophreniform disorder were abusing drugs. In a national survey conducted by the Alcohol,Drug Abuse and Mental Health Administration (ADAMHA) (Ridgely,Osher,& Talbot,1987), itwas reported that at least 50 per cent of the 1.5 to 2 million Americans with severe mental illnessabuse illicit drugs or alcohol as compared to 15 per cent of the general population. The lower ratereported in the NAMI study may be explained in one of several ways. Members of NAMI are notfully representative of all families with mentally ill relatives. It is possible that there is lesssubstance abuse in their relatives. It is equally possible that families see the mental illness as theprimary source of disturbance and overlook the substance abuse. Some families may not be ableto distinguish problems due to mental illness from those due to substance abuse. Still others maydeny the problem out of shame, guilt or embarrassment. A growing awareness of the problemsand some solutions to the provision of treatment of persons who are dually diagnosed is underway. 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 anddisability (Evans and Sullivan 1991). These patients tend to respond to their distress byexhibiting 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 foreducation that demonstrates that addictive disorders are illnesses. Understanding mental illnessas a disease that is not caused by families was necessary to successful advocacy for the mentallyill. The same advocacy must happen for those who are dually diagnosed, through a clearunderstanding of the addictive disorders. Families of the dually diagnosed continue to experiencefrustration resulting from a service delivery system that does not meet their needs, or the needsof their relatives.The purpose of this chapter is to discuss some of the issues and problems, and to outline a modelprogram "MICAA-NON" for families of the dually diagnosed. We will begin by clarifying someof 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 anoutline 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 thedually diagnosed. The underlying issues are the same nationally. They include: 1. Dividedbureaucracies across discrete disorders, mental illness, drug addiction and alcoholism andsegregated admissions criteria, treatment programs, services, and reimbursement; 2. Providersare educated and trained to deliver services for singular disorders, and are not prepared toprovide services for unfamiliar symptoms (Ridgely, Goldman,& Willenbring,1990); and, 3.Treatment approaches across these discrete disorders are different in method and philosophy andare in direct contrast and incompatible (Sciacca,1991).The more impermeable issues are the contrasting treatment methods used by providers in thedifferent fields. Traditional treatment methods for drug addiction and alcoholism are usuallyintense 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 requireabstinence from all illicit substances. Potential patients are expected to be aware of the problemscaused by substance abuse, and motivated to receive treatment. In some programs the use of medication unacceptable. This automatically excludes people who take prescribed medication fortheir symptoms of mental illness. In contrast, treatment methods used for serious mental illnessare supportive, benign and non-threatening. They are designed to maintain the patient's defenseswhich are often fragile to begin with. Criteria for admission into mental health services rarelyrequire that patients are aware of their substance abuse problems and motivated to acceptsubstance abuse treatment. Patients entering the mental health system are generally not seekingtreatment for their substance abuse problems. Within the mental health system we encounterpatients who actively abuse drugs and alcohol, and deny such use. Respondents in our Marylandstudy selected denial of the problems of substance abuse (77 %) as the most problematicbehavior they encountered in their dually diagnosed relative (see table I).These differences perpetuate the gaps in services and eliminate the dually diagnosed fromexisting services. The traditional substance abuse services will not accept patients who have aserious mental illness either because they do not meet the readiness criteria, or because they arenot prepared to provide services for symptoms of mental illness. If accepted into a substanceabuse program that is not modified, the dually diagnosed patient may experience difficulty whenparticipating in an intense, confrontational program. Traditionally, the mental health systemattempts 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 asdisorders will accept these determinations. Without knowledge of the necessity of professionaltreatment, family members are not likely to perceive their relative's entitlement to addictiontreatment. The result is frustration and hardship for families who bear the burden of caring for arelative who does not receive the benefits of professional help, or the pain and fear involvedwhen a family can no longer provide primary care. In such cases, their relative loses the supportof both the family and service systems. Community residences and other alternative living
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