Hugo Schielke, PhD, Amie Myrick, MS, LCPC, & Bethany Brand, PhD
Persons who meet criteria for dissociative disorders (DDs) often experience high levels of chronic impairment across multiple domains of functioning, including complex psychiatric symptoms as well as social, emotional, and physical health difficulties (e.g., Brand et al. 2009a, Foote, Smolin, Kaplan, Legatt, & Lipschitz, 2006; Sar, Akyuz, & Dogan, 2007). Such challenges result in marked suffering and significant treatment costs. Patients with dissociative identity disorder (DID), the most complex DD, suffer from significant rates of psychiatric comorbidity, including depression, posttraumatic stress disorder (PTSD), anxiety disorders, borderline personality disorder (BPD), substance use, disordered eating, somatic symptom disorders, and high rates of non-suicidal self-injury (NSSI) and suicide attempts (Boon & Draijer, 1993; Brand et al., 2009a; Ellason, Ross, & Fuchs, 1996; Foote, Smolin, Neft, & Lipschitz, 2008; Leonard, Brann, & Tiller, 2005; Lipsanen et al., 2004; McDowell, Levin, & Nunes, 1999; Middleton & Butler, 1998; Rodewald et al., 2011; Şar et al., 2003; Webermann, Myrick, Taylor, Chasson, & Brand, 2016). Patients with DDs have been found to attempt suicide more often than patients with PTSD, substance use disorders, or BPD without a comorbid DD (Foote et al., 2008), and to demonstrate 50% higher average impairment than patients with other disorders (Johnson, Cohen, Kasena, & Brook, 2006). The severity of DD patients’ symptoms often requires repeated and costly treatment within more restrictive levels of care (Mueller-Pfeiffer et al., 2012).
Effective treatment for DDs can reduce symptoms and suffering (e.g., Brand et al., 2009a, 2009b, 2013, 2019) and decrease health care costs for patients and society-at-large (Lloyd, 2016; Myrick, Webermann, Langeland, Putnam, & Brand, 2017). Unfortunately, DD patients average 5–12.4 years in treatment before being correctly diagnosed (Spiegel et al., 2011). During those years, they typically experience significant psychiatric and emotional distress, may need costly tests, medical procedures, and lengthy psychiatric hospitalizations, and/or may attempt (or complete) suicide.
Factors Leading to Under-diagnosis and -treatment
Few professionals receive adequate training in the assessment or treatment of dissociation (Cook, Simiola, Ellis, & Thompson, 2017; Courtois & Gold, 2009; Gleaves, 2007), and the information presented in psychology textbooks to future mental health professionals is often incomplete or inaccurate (e.g., Wilgus, Packer, Lile-King, Miller-Perrin, & Brand, 2015). Further, this information may include myths, which persist despite lack of scientific evidence as well as evidence to the contrary in studies with DD samples (for overviews, see Brand, Şar, et al., 2016; Dalenberg et al., 2012). Given the paucity of evidence-consistent training, it is understandable that clinicians demonstrate difficulty diagnosing DDs when presented with vignettes that clearly describe symptoms that fulfill DD criteria (Dorahy et al., 2017) and discriminating DDs from disorders with symptom similarities (e.g., BPD and schizophrenia; Welburn et al., 2003). This lack of training also results in a relative paucity of appropriate treatment options for patients diagnosed with DDs. For discussions regarding differential diagnosis and treatment, see Brand and Loewenstein (2010) and Loewenstein, Frewen, and Lewis-Fernández (2017). For discussions of DD assessment, see Brand, Armstrong, and Loewenstein (2006) and Brand, Schielke, Brams, and DiComo (2017).
Research indicates that when patients engage in treatment consistent with expert consensus recommendations, they show reductions in symptoms, emotional and behavioral dysregulation, distress, suicide attempts, NSSI, and psychiatric hospitalizations (e.g., Brand et al., 2009 a, 2009b, 2013, 2019; Jepsen, Bad, Langeland, Sexton, & Heir, 2014; Lampe, Hofmann, Gast, Reddemann, & Schüßler, 2014; Rosenkranz & Muller, 2011), and patients who remain in treatment generally show improvement across domains of functioning (e.g., Coons & Bowman, 2001; Ellason & Ross, 1997; Jepsen et al., 2014; Kluft, 1984/1985; Lampe et al., 2014) that are maintained over time (Ellason & Ross, 1997; Jepsen, Langeland, & Heir,2013).
Current Treatment Guidelines and Recommendations
The complex trauma literature (e.g., Chu, 2011; Herman, 1997; Kluft, 1993a) and International Society for the Study of Trauma and Dissociation (ISSTD) expert guidelines for the treatment of DID (2011) recommend a three-stage treatment model that prioritizes stabilization and safety throughout. The first stage is present-centered and explicitly focused on stabilization and safety, emphasizing psychoeducation about trauma-related symptoms, grounding techniques, containment imagery, and other healthy coping skills aimed at reducing emotional dysregulation, PTSD symptoms, and dissociation. The first stage also focuses on replacing unhealthy tension-reduction behaviors (e.g., NSSI, substance abuse, disordered eating) with recovery-focused behaviors and the development and maintenance of a collaborative therapeutic alliance (e.g., Briere & Scott, 2015; Courtois & Ford, 2013; Steele, Boon, & Van Der Hart, 2016). In DID patients, stage one work also involves working towards improved communication and cooperation between dissociative self-states (Brand, 2001; Brand et al., 2012; Loewenstein, 2006). Once stabilized, patients may move into the second stage of treatment,traumaprocessing, which involves developing a narrative of non-traumatic and traumatic experiences, resolving trauma-related cognitive distortions, and processing trauma-related memories in a carefully paced manner (e.g., Kluft, 1999) while maintaining an emphasis on safety, grounding, and containment (e.g., Kluft, 1993b). The third and final stage focuses on reconnecting with oneself and others and progressing towards personal life goals.
The Treatment of Patients with Dissociative Disorders (TOP DD) Studies
The TOP DD research program is currently focused on developing cost effective and easily accessible education programs that teach DD patients and therapists about interventions that address DD patients’ significant symptoms, suffering, impairment, and treatment costs. Some of the most crucial TOP DD findings to date are presented below; see TOPDDstudy.com for additional studies and more information.
Naturalistic TOP DD Study
The first TOP DD study, a prospective, naturalistic study of DD treatment outcomes, was designed to address some of the methodological limitations of previous studies examining trauma-related disorders, including small sample sizes and participation criteria that typically excluded DD patients (e.g., dissociation, co-morbidity, substance use, NSSI, suicidality; see Brand et al., 2009b, for a review). The naturalistic TOP DD study followed the outpatient work of over 290 international therapist-patient pairs and remains the largest outcome study conducted with DD patients to date. Over 30 months, therapists and patients reported decreases in the patients’ dissociative, PTSD, and general psychiatric symptoms; decreased NSSI, suicide attempts, hospitalizations, and treatment costs; and increases in adaptive functioning (Brand et al., 2013). A six-year follow-up found these patients continuing to benefit from expert guideline-informed treatment (Myrick et al., 2017).
The Expert Survey
A panel of thirty-six expert DD clinicians from North America, Europe, and Australia shared how often they make use of 26 core DD treatment interventions in each of the stages of DD treatment (Brand et al., 2012). The DD experts emphasized a core group of interventions focused on: safety and stabilization; psychoeducation regarding affect regulation skills (e.g., grounding and containment) and self-care; ego strengthening; awareness of emotions and body sensations; impulse control; development of healthy relationships; and the creation and maintenance of the therapeutic alliance.
A Comparison of Interventions Used by Clinicians Compared to Experts’ Recommendations
A comparison of the interventions reported by non-expert therapists in the TOP DD naturalistic study with those recommended in the expert survey (Myrick et al., 2015) indicated that non-expert therapists reported less frequent focus on “establishing safety; stabilizing from stressors and crises; teaching and practicing self-care, containment, grounding, affect tolerance and impulse control; educating about disorders and treatment; relationally focused interventions; and processing when and why dissociation occurs” (pg. 62-63). These findings informed the development of the TOP DD Network psychoeducation program for DD patients and their therapists.
The TOP DD Network Study
In an effort to provide easily accessible education about interventions that help stabilize early-stage DD patients to DD patients and their therapists, the TOP DD team developed a 40-session, 24-month Internet-based psychoeducation program consistent with expert recommendations and ISSTD treatment guidelines addressing DD patients’ symptoms, affect regulation difficulties, and struggles with maintaining safety. Information was presented by video and accompanied by exercises aimed at helping patients put the information into practice. Participants could re-review sessions as often as they wished; to allow time for application and practice, however, participants had to wait 7 days before gaining access to new sessions. Participation was associated with decreased symptoms, higher adaptive capacities, and improved emotion regulation (overall sample |d|s = 0.44–0.90), and NSSI (Brand et al., 2019). Notably, patients with higher initial levels of dissociation – the patients often described as the most difficult to help progress in treatment, and the patients for whom this program was specifically developed – demonstrated the greatest improvements over the course of the program (|d|s = 0.54–1.04 vs. |d|s = 0.24–0.75 for patients with lower initial levels of dissociation). The reduction in NSSI in the patients who entered the program with the highest levels of self-injury was particularly striking: the three patients with the highest reported incidences of NSSI at program entry (approximately 100, 125, and 150 times in the previous 6 months) had considerably reduced their NSSI by the end of the program (respectively self-injuring 0, 10, and 10 times in the previous 6 months) – a notable finding given that patients with high NSSI are often excluded from clinical research.
The TOP DD naturalistic study demonstrated the benefit associated with treatment that focused on trauma and dissociation for those diagnosed with DDs. However, community clinicians appear to under-utilize some DD treatment interventions DD experts think are critical for stabilizing DD patients. The TOP DD Network program aimed to share education based on expert recommendations with patients and their therapists in order to assist in stabilizing DD patients.
The TOP DD motto is “work together, learn together” – and in keeping with this, the next TOP DD study will evaluate a participant-informed revision of the Network program within a randomized controlled trial (RCT) design. The TOP DD Network psychoeducation programs intend to demonstrate expert-recommended and evidence-informed stabilization-focused interventions to DD patients and therapists in a sequence we recommend based on research findings to date, the feedback of our participants, and our years of experience treating DD patients. We hope many of you will work and learn together with us by participating in the Network RCT – and invite you to visit TOPDDstudy.com to find out more!
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Hugo Schielke, Ph.D., is a clinical psychologist with the California Department of State Hospitals; Amie Myrick, M.S., is a Licensed Clinical Professional Counselor and the Director of Education and Training for Family & Children’s Services of Central Maryland; and Bethany Brand, Ph.D. (BethanyBrand.com), is a Professor and Director of the Clinical Specialization Program at Towson University and the Principle Investigator of the Treatment of Patients with Dissociative Disorders program of research (TOPDDstudy.com). All three are specialized in the identification, treatment, and research of trauma and dissociative disorders.