When Your Loved One Has an Eating Disorder: Helping Them Heal On the Road to Recovery Jennifer Moran, Psy.D.
Anorexia Nervosa Bulimia Nervosa Diagnoses Eating Disorders, Not Otherwise Specified **Binge Eating Disorder (will be official diagnosis in DSM-V)
Eating Disorder Treatment History Dr. Louis-Victor Marce (1860) in regards to Anorexia Nervosa: This hypochondriacal delirium, then, cannot be advantageously encountered so long as the subjects remain in the midst of their own family and their habitual circle...it is therefore indispensable to entrust the patients to the care of strangers. Silverman, J. (1997) Anorexia Nervosa: Historical Perspective on Treatment in Garner, D. & Garfinkel, P. (Eds). Handbook of Treatment for Eating Disorders, Second Edition pp 3-10. New York: The Guilford Press.
Charles Laseague (1873) The patients should be fed at regular intervals and surrounded by persons who would have moral control over them; relations and friends being generally the worst attendants.
John A. Ryle, MD. (1936) The first essential, after diagnosis, is to explain to the patient and the parents separately the nature of the disease in the simplest and most direct terms. Visitors and particularly near relatives who are likely to cause tears or other emotional reactions should be disallowed or strictly rationed at first.
Hilda Bruch (1962) Self-starvation is symbolic of a struggle for control, autonomy and self-respect Struggle results from mother not recognizing child s expression of independent needs Therapy should focus on challenging erroneous assumptions and attitudes
1980 s-2000 s Cognitive Behavioral Therapy (individual) Nutritional counseling Psychiatric follow-up Medical Stabilization Family Therapy as needed (Minuchin developed structural interventions for family in 1970 s addressing boundaries, conflict resolution)
1990 s-present Maudsley method developed at Maudsley Hospital in 1980 s; made popular by Dare, Lock, Le Grange and Agras Parents are empowered to re-feed their adolescent; seen as a resource Therapist takes agnostic stance Family therapy is the central form of treatment for adolescent with anorexia nervosa Hospitalization is only to stabilize someone medically Empirically validated treatment of choice for adolescents with AN
Collaborative Caring The New Maudsley Method
Typical Carer Experiences Frustration Anger Helplessness Shame Sadness Isolation
Carer Needs Education Support Connection to other carers Skills Referrals Help finding resources Bibliotherapy recommendations
Carer Stressors Meals with their loved one Stigma of an eating disorder.did they cause it? Are they enabling it? Cost of treatment Unmet needs of carer Strain on relationship with loved one Fear of causing or worsening the disorder
Obstacles Getting them into treatment Confidentiality limits
NICE Guidelines National Institute for Health and Clinical Excellence (NICE) used literature review to determine best practices Grade A recommendations: most reliable based on synthesis of all studies
NICE: Anorexia Nervosa Limitations in studying Anorexia Nervosa Dangerous to test some interventions Diversity of cases makes it hard to fully assess Not all interventions are tailored to AN No Grade A recommendations made Grade B: family interventions should be offered to children and adolescents with Anorexia Nervosa
NICE: Bulimia Nervosa Grade A: CBT focused on the eating disorder Family involvement with adolescents
NICE: Carers Entitled to annual assessment of carer s needs Entitled to access information about the health of the person they are caring for Try to incorporate families into the treatment process
How? Early dialogues between loved one and therapist about importance of carer inclusion Some information does not need patient consent: Providing carer with general information about dx Providing carer with a needs assessment Providing carer with access to carer workshop/support groups
When can carer be involved without consent?* High risk of harm to self or others Patient does not have capacity to choose LOC Involvement of the family is the least restrictive option Evidence that family communication is good when patient is not ill No history of independent living *things to consider, not necessarily justified
Tips for Caregivers Seek your own support Stay informed and educated Follow up with your loved one s providers Maintain balance
Decreasing Shame and Blame This is not your fault! Just like it would not be your fault if your loved one developed cancer or the flu! Your loved one never wanted to have an eating disorder.
Education Eating Disorders have highest recovery rate when intervene within first 3 years of onset Children and adolescents show up to 76% full remission Eating Disorders can have lasting medical consequences Clarification on diagnoses and treatment options Treatment is multi-disciplinary and LONG-TERM! Eating Disorders rarely get better on their own
Just Remember Someone does not have to be significantly underweight to have an eating disorder People who are of normal weight or higher may still have very negative medical consequences People who are normal weight or higher may be able to disguise their eating disorder for a longer period of time.
How to Confront a Loved One Set a time to talk Communicate your observations and concerns, calmly and without judgment Recommend resources Avoid conflict Avoid blame or shame Validate that it is complex Offer support
How to Help-- continued Lead by example Focus on personality and accomplishments rather than appearance Be caring but firm Educate yourself about eating disorders Seek support for yourself
Emotional Trigger Symptoms: Physical/cognitive Baseline Reactions: Ways of coping Symptoms Decrease
Emotional Trigger Symptoms: Cognitive/Physical Reactions
Ego-Syntonic vs Ego-Dystonic Eating Disorders are Ego-Syntonic: The person really identifies with the eating disorder and considers these behaviors to be consistent with their own values.
Externalizing: Who is this Ed?
Externalizing Venn diagram Life Without Ed by Jenni Schaefer and Thom Rutledge Anger should be directed at the eating disorder and not your loved one Conflict with the eating disorder is not the same as conflict with your loved one Family, especially siblings, can help your loved one feel normal and do normal things
Stages of Change Precontemplation Contemplation Preparation Action Maintenance Recycling/Relapse
Motivational Interviewing Understanding the stages of change What types of questions might they ask to encourage analysis of their behavior? Helping them help their stuck loved one
Kangaroo Rhinoceros Ostrich Jellyfish Dolphin St. Bernard Caregiver Styles (Janet Treasure, et.al)
Kangaroo: Too much emotion, too much control Worsen how pt feels Anxiety about e.d. Stifles; no opportunity to master skill overly supportive; don t allow space
Rhinoceros: too much logic, too little emotion Pt feels worse Anxiety about e.d. Pt rejected, feels unloved; no trust between parents/child Shout, control, argue
Ostrich: Too little emotion, too little control Pt feels worse Best to let the clinic sort it out e.d. flourishes; pt has shame Don t allow talk of e.d. in house
Jellyfish: too much emotion, too little control Pt feels worse All is dreadful; pt may die Pt avoids contact, feels bad they are hurting others Isolation, sleep disturbance, tearful
Caregiver Ideal
Managing ED Behaviors Helping to anticipate triggers Helping to choose alternative coping strategies Helping to problem solve Providing distraction Learning to be calm with voiced urges
CBT Teaching loved ones how to challenge thoughts Teaching cognitive distortions Helping caregivers understand eating disorder thoughts and consequences
Emotional Regulation Helping to identify and label emotions Helping to support feeling emotions Helping with distress tolerance Helping with coping strategies
Functional Analysis How does family dynamics impact communication? Eating Disorder behaviors? How does caregiver behavior impact loved one s behaviors?
Communication/Listening Assertiveness Active Listening I statements
Common Questions What do I say? How do I manage different diets in the house? Loved one refuses to get appropriate treatment How do I deal with my loved one refusing to allow communication between the treatment team and myself? Co-morbid problems: substance abuse/mood disorder/selfharm I don t get it: My loved one eats normally around me but says they re still struggling. I m so tired of this, I can t help but be angry at my loved one.
Supports for Caregivers Family support group General support group Bibliotherapy Caregiver Intensive Workshop Therapy: individual/family
Bibliography Garner, D. & Garfinkel, P. (Eds.) (1997) Handbook of Treatment for Eating Disorders, 2 nd Edition. New York: The Guilford Press. Lock, J.; Le Grange, D.; Agras, S. & Dare, C. (2001) Treatment Manual for Anorexia Nervosa: A family based approach. New York: The Guildford Press. Treasure, J.; Schmidt, U. & Macdonald, P. (Eds.). (2010) The Clinician s Guide to Collaborative Caring in Eating Disorders: The New Maudsley Method. New York: Routledge. Treasure, J.; Smith, G. & Crane, A. Skills-based Learning for Caring for a Loved One with an Eating Disorder: The New Maudsley Method. (2007) New York: Routledge.
Questions?
Jennifer Moran, Psy.D. (410) 427-3874 jmoran@sheppardpratt.org