Prozac on the Couch – Depression and Anxiety in People with an Intellectual Disability PsychDD

1. Prozac on the Couch – Depression and Anxiety in People with an Intellectual Disability PsychDD November 2013 Jack Dikian Georgina Kenaghan

3. Presentation objectives Depression and anxiety in a historical and cultural context – psychoanalysis to pharmacology The high prevalence and reasons for depression and anxiety in people with Intellectual Disability (ID) Recognizing the symptoms and behaviours associated with depression and anxiety in people with ID Discuss the emerging screening tools and acknowledgement of the difficulties of diagnosis in this population group Opportunities to increase the awareness of and screening for depression and anxiety when supporting people with ID

4. Depression and Anxiety Depression – The common features of depressive disorders are the presence of sad, empty or irritable mood, accompanied by somatic and cognitive changes that significantly affect the individual’s capacity to function. Anxiety Disorders – Include disturbances that share features of excessive fear, worry, behavioural disturbances; that are out of proportion to the actual likelihood or impact of the anticipated event. • American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders 5th ed. (DSM-V). American Psychiatric Publishing 2013. • References throughout the presentation are to Major Depressive Disorder and Generalised Anxiety Disorder

5. Prozac on the Couch Prozac on the Couch

6. A Biological Basis

7. Pop-culture

9. The interplay between neurotransmitters & symptomology • Concentration • Interest • Motivation • Sex • Appetite • Aggression Serotonin (5-HT) Noradrenaline (NA) • Mood • Anxiety • Irritability • Thought process Adapted from: Stahl SM. In: Essential Psychopharmacology: Neuroscientific Basis and Practical Applications: 2nd ed. Cambridge University Press 2000.

10. Antidepressants (normal population) People just recovered from depression 100 80 60 40 20 0 People on an antidepressant No antidepressants used Stopped antidepressant use after 3 years No (%) of people still well 0 1 2 3 4 5 Years after recovery Frank & Kupfer studies, Archives of General Psychiatry 1990

11. High rates of relapse (normal population) • 76% of patients with lingering symptoms of depression relapsed within 10 months1 94% of depressed patients who experienced lingering symptoms had mild to moderate physical symptoms1 1. Adapted from: Paykel ES, et al. Psychol Med. 1995;25:1171-1180.

12. Prevalence rates of Depression and Anxiety for people with ID vary greatly • Holt et al., 2008 10% - 74% • Laconoet al., 1997 25% - 40% • Gillberg et el., 1986 10% - 37% • Rai., et 2010 Antidepressant use in adults with intellectual disability as high as 62% • “Co-occurring mental health in Intellectual Disability is 3 to 4 times higher than in the normal population” (APA, 2013) • Holt G, Hardy S, Bouras N (2008) Mental Health in Learning Disabilities. A Reader. Brighton, UK. Pavilion Publishing • Lacono I, Torr J, Galea J and Graham J (1997) Centre for Developmental Disability Health Victoria, Australia • Gillberg C, Presson E, Grufman M, Themner U (1986) Psychiatric disorders in mildly and severely mentally retarded urban children and adolescents: • epidemiological aspects. British Journal of Psychiatry. • Rai P, Kerr M (2010) Antidepressant use in adults with Intellectual Disability. The Psychiatrist, The Royal College of Psychiatrists • American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders 5th ed. (DSM-V). American Psychiatric Publishing 2013.

13. High rates of mental illness in people with ID • 1. Diagnostic difficulties ie. overshadowing • 2. Biologically-driven arousal regulation • 3. Psychosocial • Diminished communication abilities leading to inadequate coping skills and coping statements • Social rejection & social support links with life stresses • References: Victorian Dual Disability Service (Aust data)

14. Symptoms of Depression - normal population Cognitive/emotional Physical • Sadness • Vague aches and pains • Loss of interest or pleasure • Headache • Overwhelmed • Sleep disturbances • Diminished ability to think or concentrate, indecisiveness • Fatigue • Back pain • Excessive or inappropriate guilt • Weight loss/gain • Medical problems American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. Fourth Edition, Text Revision. American Psychiatric Association.

15. Symptoms of Generalized Anxiety - normal population Cognitive/emotional Physical • A pervasive feeling of apprehension or dread • Feeling tense; having muscle tightness or body aches • Can do nothing to stop worrying • Sleep disturbances • An inability to tolerate uncertainty • Feeling edgy, restless, or jumpy • Intrusive thoughts • Stomach problems, nausea, diarrhoea • Constant worries • Poor problem solving American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. Fourth Edition, Text Revision. American Psychiatric Association.

16. People report physical symptoms • 69% of diagnosed depressed patients reported unexplained physical symptoms as their chief complaint1 • Carers identified features of depression within people with ID that GPs failed to recognise; even with the carers present. 2 N = 1146 Primary care patients with major depression (normal population) • Simon GE, et al. N Engl J Med. 1999;341(18):1329-1335. • Torr, J et al,2008, JIDR, Checklists for general practitioner diagnosis of depression adults with intellectual disability

17. Important Classification Symptoms Standard diagnostic criteria (Normal population) Cognitive symptoms DC-LD • Sleep • Appetite • Agitation • Other • Increase in irritability • Increase in aggression

18. Intellectual Disability - equivalents of depression DSM-V Criteria for MDD Equivalent observable behaviours* 1.Depressed or irritable mood • Apathetic, sad or angry facial expression • Lack of emotional reactivity; upset; crying • Verbal and physical aggression 2. Markedly diminished interest or pleasure in most activities nearly every day • Withdrawal; lack of reinforcers • Refusal to participate in leisure activities or work • Change in ability to watch TV or listen to music • Tantrums at meals; stealing food; refusing activities, hoarding food in room. 3. Significant weight loss or weight gain; decrease or increase in appetite nearly daily • May report being up at night; others may note going to bed quite late. • Any change in sleeping habits; tantrums or activity during sleeping hours • Sleeping or napping during the day 4. Insomnia/ Hypersomnia nearly every day * Mental Health First Aid – Intellectual Disability Manual 2nd Edition 2010

19. Intellectual Disability - equivalents of depression DSM-V Criteria for MDD Equivalent behaviours* 5. Psychomotor agitation or retardation nearly every day • Pacing, hyperactivity; decreased energy, passivity • Slowness in activities of daily living; muteness whispering; monosyllables • Increase in self-injurious behaviour or aggression 6. Fatigue or loss of energy nearly every day • Appears tired; refuses leisure activities or work • Withdraws to room; loss of daily living skills • Refusal to perform personal care tasks • Incontinence due to lack of energy or motivation. 7. Feelings of worthlessness; excessive/ inappropriate guilt nearly daily • Statements such as "I'm stupid" or “I’m bad” or “I’m not normal” • Poor performance at work • Change in leisure habits and hobbies • Appearing distracted 8. Diminished ability to think/concentrate; or indecisiveness • Perseveration on the deaths of family members & friends • preoccupation with funerals 9. Recurrent thoughts of death, suicidal behaviour/ideation/ statements/ attempts * Mental Health First Aid – Intellectual Disability Manual 2nd Edition 2010

20. Intellectual Disability - equivalents of anxiety DSM-V Criteria for GAD Equivalent behaviours* Excessive anxiety & worry (apprehensive expectation) The individual finds it difficult to control the worry • Self-reports of feeling nervous, anxious, panicked or scared & excessive worry about health, family relationship with friends/carers/staff, work/day program, change or uncertainty; expecting the worst to happen • Avoidance of certain stimuli, people or environments • A person with an ID is more likely to report the physical sensations rather than their emotional state Expression through: • Self injurious behaviour, • Aggressive behaviour, • Disruptive or defiant behaviour, • Self-soothing behaviours • Seeking reassurance, ‘clingy’ or over-demanding behaviour • Withdrawal (avoidance) refusal to participate in activities • Seeming to ‘freeze’ • Overactivity or increased agitation • Repetitive questioning * Mental Health First Aid – Intellectual Disability Manual 2nd Edition 2010

21. Intellectual Disability - equivalents of anxiety DSM-V Criteria for GAD Equivalent behaviours* 3. Physical Symptoms including: • Restlessness of feeling keyed up or on edge • Being easily fatigued • Difficulty concentrating or mind going blank • Irritability • Muscle tension - Sleep disturbances • Physical symptoms are often not reported in medical terms & lack specific information about location of symptoms • Irritability, increased arousal, restlessness ie. pacing • Appears tired; refuses leisure activities • Changes in attention to tasks normally completed • Muscle trembling/ twitching, feeling shaky, muscle aches/ soreness reported • Difficulty falling asleep or staying asleep or restless unsatisfying sleep • Associated physical symptom features including somatic symptoms of sweating, nausea, diarrhoea; and exaggerated startle response * Mental Health First Aid – Intellectual Disability Manual 2nd Edition 2010

22. Screening tools and associated difficulties • DSM-V acknowledges that “Assessment procedures may require modifications for a number of reasons or disabilities”. • There continues to be reliability concerns around diagnosis, validation or eliciting symptoms; particularly in moderate or severe ID • Growing literature validating mental health symptomology in • mild ID • Difficulties including diagnostic overshadowing etc • Examples of emerging or existing screening tools • Ref: American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders 5th ed. (DSM-V). American Psychiatric Publishing 2013.

23. Some Screening tools • The Glasgow Depression Scale – 20 items self report & parallel 16 items • informant version. Using DC-LD, DSM, & ICD-10 & extensive • scale development renders it a promising tool. • The Anxiety, Depression & Mood Scale [Esbensen AJ] targets depression & • severe ID. This is an informant, empirically derived scale. • Able to assess co-morbid anxiety. • The Mood, Interest & Pleasure Questionnaire developed for caregivers of individuals • with severe ID. Specific focus is placed on level of interest/pleasure. • Mini PAS-ADD Psychiatric Assessment Schedule for Adults with a • Developmental Disability (PAS-ADD) used to screen a population for mental • Health problems, or to monitor the symptoms of at-risk individuals.

24. Going forward • The ongoing need for increased awareness. • Increasing the awareness of depression and anxiety for carers supporting people with an ID. • We are reviewing/investigating this need and how we might address it.

25. Proposal to develop further awareness and reconinationof depression and anxiety • Output and Outcomes • A guide used by support workers & Mangers to better understand depression & • anxiety, so they are better prepared when discussing client behaviours/issues with • practitioners and other health professionals. • Able to be more proactive and timely in raising concerns around possible • emergence of depression and anxiety. • Identification of behaviours that may be suggestive of depression and anxiety. • An augmented screening tool to help gauge the possibility of depression and anxiety • and facilitate relevant data gathering and analysis.

26. Resources • Intellectual Disability Mental Health First Aid Manual 2nd Edition http://www.mhfa.com.au/cms/wp-content/uploads/2011/02/2nd_edition_id_manual_dec10.pdf • The Royal Collage of Psychiatrists. Depression in people with learning disabilities. http://www.rcpsych.ac.uk/mentalhealthinformation/mentalhealthproblems/depression/learningdisability.aspx • Mental Health First Aid Training and Research Program. Suicidal Thoughts and behaviours: First Aid Guidelines. Melbourne: ORYGEN Youth health Research Centre, University of Melbourne http://www.mhfa.com.au/Guidelines.shtml • Intellectual Disability Mental Health e-Learning. 3DN (Department of Developmental Disability Neuropsychiatry) at the University of New South Wales (UNSW). http://www.idhealtheducation.edu.au/ • Depression in Adults with an Intellectual Disability: Checklist for Carers & General Information. Centre for Developmental Disability Health Victoria. http://www.cddh.monash.org/research/depression/ • Children’s Hospital Westmead (CHW) School Link Initiative: Supporting the Mental Health of Children and Adolescents with an Intellectual Disability. http://www.schoollink.chw.edu.au/

27. Prozac on the Couch – Depression and Anxiety in People with an Intellectual Disability Jack Dikian Statewide Behaviour Intervention Services || Clinical Innovation and Governance Ageing Disability and Home Care  ||  Department of Family and Community Services Jack.Dikian@facs.nsw.gov.au T 02 9407 1900 ||  F 02 9407 1990 Georgina Kenaghan Behaviour Support Practitioner | Specialist Support Team 1 Ageing Disability and Home Care|Department of Family and Community Services Georgina.Kenaghan@facs.nsw.gov.au T 02 9407 1855 | F 02 9407 1677