Ms Nicki Wilson Dr Roger Morgan President Consultant Psychiatrist - - PowerPoint PPT Presentation

Ms Nicki Wilson

President Eating Disorders Association of NZ (EDANZ) Auckland 14:00 - 16:00 WS #19: Eating Disorders Symposium 16:30 - 18:30 WS #25: Eating Disorders Symposium (Repeated)

Dr Roger Morgan

Consultant Psychiatrist Princess Margaret Hospital Christchurch

Eating disorders My family’s experience

Nicki Wilson

• Parent with lived experience
• President of EDANZ
• Executive BoD F.E.A.S.T.
• ANZAED committee member
• Speaker, conference delegate, advocate

Me – Relieved, confident, hopeful Emma – Resistant, angry, total denial Expecting Diagnosis Clear Pathway Recovery Experience Lack of knowledge, understanding, and treatment

GP appointment

“Normal teenage behaviour” “Come back in a month - without your parents” “Mother needs to step back” BMI not a reliable measure on its own Delay in diagnosis and intervention :

• nutritional status worsens
• psychological symptoms become entrenched

Common Experience

• Miserable, angry, despairing
• Strange behaviour around food
• Excessive exercise
• Openly self critical
• Failing physically and mentally
• Denial & resistance

Our sensible, happy, kind, honest 16 year old…?

What this felt like

We tried:

• rationalising
• negotiating
• bribing
• threatening

Every member of the family affected

• Disbelieving
• Bewildered
• unsupported
• Desperate

We sought:

• Cause
• Blame
• Solution
• Something
• Anything!
• Grief
• Anger
• Frustration
• Shame

Family in Crisis

Misconceptions

• A diet taken too far - a selfish choice
• Dysfunctional family, childhood trauma
• It’s about control….
• Self esteem, body image are the problem
• Privileged teenage girls

Barriers to recovery - shame, secrecy, stigma

Stigma

Scott Griffiths BPsych(Hons)1,*, Jonathan M. Mond PhD2, Stuart B. Murray PhD3 andStephen Touyz PhD1

• Studies show stigma reduces recovery rates & is

correlated with longer duration of illness

• Our experience:
• Friends
• Family
• Health professionals - implications for career

Guilty, Ashamed, Terrified

“I don’t have the words to adequatly describe being incapable

• f providing my child with one of the necessities of life”

“I know how we must have looked to the therapist. I was a nervous wreck and my husband was sullen and angry. We’d had weeks of conflict with our daughter and watched her medical decline while we waited for the appointment…Our daughter smirked at us when I described the situation. We looked like the very stereotype of overinvolved, neurotic mother, distant father and individuating teen. But our daughter was slowly dying and didn’t’ think she was ill, and we were really scared”

1st appointment

ED Service appointment

• Positive
• Specialist knowledge
• Thorough check of vitals
• Follow up appointment in 1

week

• Hospital Admission discussed
• Negative
• No parent involvement
• No information
• No strategies
• Psychiatrist’s survey - guilt

Hospital

• Positive
• Negative
• Ltd information
• Felt excluded, blamed,

incompetent

• Collegial alliance lacking
• Transition
• Safe
• Weight gain
• Dedicated compassionate

staff

• A break of sorts for family

What it’s like to have an eating disorder

• “Terrifying
• Scariest thing you can think of….
• Have to do that six times a day!!!
• Felt confused, felt like I couldn’t trust myself. Felt angry,

belittled, loss of dignity, loss of privacy.

• Eating disorder thoughts are OVERWHELMING
• Made me into someone I am not
• Constant internal dialogue/battle – exhausting
• Powerless to stop – wanted help, but couldn’t ask

• Determined to return to her life
• Weekly appt with specialist
• Family therapy
• No collaboration between clinicians
• Still no understanding, knowledge or strategies

Home

Rapid psychological deterioration & weight loss

“Family members supporting a loved one through an eating disorder are shown to have higher levels

• f carer distress than for carers of persons with
• ther illnesses on measures of anxiety and

depression”

A systematic review of family caregiving in eating disorders

Eat Behav. 2014 Aug;15(3):464-77. doi: 10.1016/j.eatbeh.2014.06.001. Epub 2014 Jun 19. Anastasiadou D1, Medina-Pradas C2, Sepulveda AR3, Treasure J4.

Two more hospital admissions

We felt disempowered, untrustworthy, incompetent

3rd Admission

• Losing weight
• Traumatised
• Parents excluded
• Threatened Em would be sectioned

Something had to change

Hope, Information, Collaboration

www.feast-ed.org www.aroundthedinnertable.org

FBT

Understanding the Science

Walter Kaye, Director of the Eating Disorders Program & Professor Dept of Psychiatry at the UC San Diego, School of Medicine

• fMRI scanning giving new insights into neural processes
• AN behavior is driven by a powerful neurobiology
• Anxiety reducing character to dietary restraint

Understanding the Science

Walter Kaye, Director of the Eating Disorders Program & Professor Dept of Psychiatry at the UC San Diego, School of Medicine

• Premorbid temperament & personality traits:
• Risk avoidant
• Uncertainty intolerant
• Sensitive to punishment
• Reward insensitivity
• Perfectionist
• Achievement oriented

Understanding the Science

• Cynthia Bulik Professor of Eating Disorders in the School of Medicine

at the University of North Carolina at Chapel Hill.

• GWAS (Genome wide association study) ANGI
• DNA methylation & Microbiome
• Genetically vulnerable have paradoxical response to negative energy

balance

• Negative energy balance – a state caused by non-deliberate or

deliberate dietary restriction

Understanding the Science

Cynthia Bulik UNC

• Most people can risk temporary dietary

restrictive period without consequence

• Dietary restriction sets into motion

physiological, neurobiological, & emotional forces in those folks genetically predisposed

• Dieting is gateway drug for vulnerable

individuals

Understanding the Science

• When people taught powerful neurobiological mechanisms -

different relationship emerges – can’t argue with science

• Patient feels less blame, less guilt & more motivated to recover

when understand the scientific evidence

• Carer learns no-one’s fault, how to support in appropriate

successful ways, distress is reduced

• Carers & clinicians a strong united force on the

same page

Knowledge empowers

• Recovery from an Eating Disorder is possible
• An eating disorder is a serious biologically influenced

mental illness - not a choice

• Food is medicine - Nourish body & mind before talk

therapy

• Recovery involves fighting an uphill battle against

biology

Anosognosia

• Pertaining to an illness or disability in which the sufferer

seems to be unaware of, or denies, the disability

• Patients with anorexia nervosa are often "anosognosic"

they truly do not feel ill and they experience their own behaviors and thoughts as normal.

• This is not a choice or conscious denial, but rather a feature
• f brain dysfunction

Family-Based Treatment

Also known as FBT or Maudsley

• Family plays a central role in treatment
• “Food is medicine” - parents are responsible for all food decisions
• The patient seen as under the strong influence of malnutrition

& unable to make choices about food & activity

Latest Treatment knowledge

• Latest research - unprecedented levels of success when families

become centrally involved in the treatment process

• Multi-Family Therapy for adults
• 5 day, 40 hours of treatment, 2-6 families
• Allows support people to learn & practice beside their loved ones

& learn together in treatment

Carer - clinician collaboration

• ED takes advantage of lack of common voice
• Undermining trust & confidence
• Splitting parenting partners
• Mistakes (inevitable) empower ED
• Patient cannot trust anyone
• Patient is left vulnerable to ED voice

“Although outwardly I must have seemed insane, inside I was secretly relieved that I

was finally getting the help I needed to get my life back, and that the choice to eat was being taken away." “This is such an unbelievable, sneaky illness, I think that’s what was hardest for my

• parents. They couldn’t fathom how much & why I was struggling simply to eat. I’m

a really honest person, so no wonder it took them a while to catch on to the lies anorexia had been forcing out of my mouth about food. I had been independent for so long that requiring me or telling me to do something was extremely foreign.” "I would tell her to leave me alone while inside I was crying out for her. When she did leave me alone (as I had asked) it proved to me that I was unloveable etc. So please mums, do not give up on your daughters. It is so very much part of AN."

Patient’s voices

• Food is medicine
• Separate ED from patient
• Distress tolerance
• Anosognosia – Can’t wait for insight
• Not normal parenting
• Authoritative vs authoritarian
• Trust relationship will return
• State not Weight

Information, involvement & strategies

Our gorgeous girl has her life back

Barriers to Recovery

• Primary Health Care provider’s knowledge
• Parental guilt & disempowerment
• Myths, misinformation & stigma
• Admission criteria & waiting times
• Failures in communication & collaboration
• Patient over 18 refusing treatment / anosognosia
• Transitions & relapse prevention
• Target weight set too low

Keys to recovery

• For the patient
• Early identification and

intervention

• Restoring natural weight

with sufficient regular nutrition

• Ongoing medical supervision
• Identification & attention to

co-morbidities

• TRUST in the team
• For parents / carers
• Information
• Skills and strategies
• Inclusion & involvement
• Overcoming guilt
• Attention to siblings
• Self care
• Peer support

Hope

5 things to take away

1. Eating Disorders are treatable - any gender, age, stage 2. Early detection/intervention a priority 3. Knowledge is power - understanding the science helps everyone 4. Collaboration - united team promotes recovery & prevents relapse 5. Food is medicine / state not weight

Thankyou!

NEW FED TR

Neurobiologically Enhanced with Family Eating Disorder Trait Response Treatment

• 5 day intensive multi family therapy, 40 hours, 2-6 families
• Walter Kaye, MD, UCSD
• Stephanie Knatz Peck, PhD, UCSD
• Laura Hill, PhD, the Centre for Balanced Living
• Neurobiology Psycho-education
• Client – coping skills training
• Support person – supportive skills training

Non-dominant hand activity

Purpose to understand:

• the dominating ED thoughts, feelings and behaviours
• The difficulty of relinquishing ED behaviour & sustaining on a daily basis

“I am writing with my non-dominant hand.”

Developed by Laura Hill, PhD in Family Eating Disorder Manual (2012) by Hill, L., Dagg, D., Levine, M.. Smolak. L., Johnson, S., Stotz,S., Little, N, Edited by Susan Altan, MLS

Non-dominant hand activity

Purpose to understand

• the dominating ED thoughts, feelings and behaviours
• The difficulty of relinquishing ED behaviour & sustaining on a daily basis

“I feel ___writing with my non-dominant hand”

Developed by Laura Hill, PhD in Family Eating Disorder Manual (2012) by Hill, L., Dagg, D., Levine, M..

• Smolak. L., Johnson, S., Stotz,S., Little, N, Edited by Susan Altan, MLS

Non-dominant hand activity

Purpose to understand

• the dominating ED thoughts, feelings and behaviours
• The difficulty of relinquishing ED behaviour & sustaining on a daily basis

“I am trying to write this sentence fast”

Developed by Laura Hill, PhD in Family Eating Disorder Manual (2012) by Hill, L., Dagg, D., Levine, M.. Smolak. L., Johnson, S., Stotz,S., Little, N, Edited by Susan Altan, MLS

Interpretation: How is writing with your non- dominant hand like having an eating disorder?

• 1. Your brain is wired to write most easily with your dominant
• hand. You don’t think twice about doing it. It is

comfortable, easy and natural.

• 2. The way you eat and respond to food is fundamentally a

result of how your brain is wired. Eating disorders are brain based, just like writing with your non-dominant hand.

Developed by Laura Hill, PhD in Family Eating Disorder Manual (2012) by Hill, L., Dagg, D., Levine, M.. Smolak. L., Johnson, S., Stotz,S., Little, N, Edited by Susan Altan, MLS

Neurobiological research finds that the brain of a person with an eating disorder fires differently from a person without an eating

• disorder. The “dominant” way for a person with:

Anorexia nervosa to respond to food is to:

• 1. Not eat
• 2. Move and keep moving

Bulimia nervosa to respond to food is to:

• 1. Impulsively purge by vomiting or laxative abuse etc.
• 2. Delay eating food, and then become overwhelmed by an uncontrollable

urge to eat, without any natural sensations or feelings of fullness to regulate when to stop eating.

Developed by Laura Hill, PhD in Family Eating Disorder Manual (2012) by Hill, L., Dagg, D., Levine, M.. Smolak. L., Johnson, S., Stotz,S., Little, N, Edited by Susan Altan, MLS

People without an eating disorder response to food is to:

• 1. Eat spontaneously and enjoy the taste
• 2. Feel the sense of hunger or fullness

Not “dominant” or natural for a person with an eating disorder.

• Research finding brains of persons with ED not register hunger, taste, nor a

sense of fullness or enjoyment after eating.

• To become physically healthier, person with ED has to override “dominant”
• r natural thoughts and feelings about food.
• For a person with an eating disorder, eating and not purging may take one’s

full concentration.

Developed by Laura Hill, PhD in Family Eating Disorder Manual (2012) by Hill, L., Dagg, D., Levine, M.. Smolak. L., Johnson, S., Stotz,S., Little, N, Edited by Susan Altan, MLS

“It takes lots of support, determination, and time to shift the predominant method of eating from destructive eating disorder patterns to the “non- dominant” healthier methods of eating and managing food. Recovery from an eating disorder takes time, day by day and over the

• years. It is helpful to plan a mealtime routine that allows one to slow

down and take the slower pace needed to eat. As a family member or friend, you may need to slow your pace while you eat beside your loved one. It takes more concentration, more support, more humility, and a lot more work than others expect or realize. …..”

Developed by Laura Hill, PhD in Family Eating Disorder Manual (2012) by Hill, L., Dagg, D., Levine, M.. Smolak. L., Johnson, S., Stotz,S., Little, N, Edited by Susan Altan, MLS