1. DEVELOPMENTAL DISABILITY AND MENTAL HEALTH: ISSUES IN ASSESSMENT AND MANAGEMENT Dr Seeta Durvasula Dr Seeta Durvasulaseetad@med.usyd.edu.au Dr Vivienne Riches Dr Vivienne Riches vriches@med.usyd.edu.au 7th October 2008

2. Developmental Disability The term “ developmental disability ” means a severe, chronic disability of a person which: The term “ developmental disability ” means a severe, chronic disability of a person which:  is attributed to an intellectual, or physical impairment or combination of intellectual and or physical impairment;  is manifested before the person attains the age of 18;  is likely to continue indefinitely  deficits in adaptive behaviour

3. Intellectual disability/ Learning disability Intellectual Disability refers to substantial limitations in present functioning. It is characterized by significantly sub-average intellectual functioning, existing concurrently with related limitations in two or more of the following applicable adaptive skill areas: communication, self care, home living, social skills, community use, self direction, health and safety, functional academics, leisure, and work. Mental retardation manifests before age 18. Intellectual Disability refers to substantial limitations in present functioning. It is characterized by significantly sub-average intellectual functioning, existing concurrently with related limitations in two or more of the following applicable adaptive skill areas: communication, self care, home living, social skills, community use, self direction, health and safety, functional academics, leisure, and work. Mental retardation manifests before age 18. *AAMR (2002). Mental Retardation: Diagnosis, classification, and systems of support (10th Ed.). Washington, DC:AAMR *Now AAIDD

4. Dual diagnosis Currently between 20% to 35% of all noninstitutionalized persons with intellectual disability are diagnosed as “mentally retarded/mentally ill, compared to 15 to 19%of the general population who meet the criteria of mental illness as defined by the American Psychiatric Association. (American Psychiatric Association, 1995; Einfeld & Tonge, 1991; 1992; Iverson & Fox, 1989; Menolascino & Stark, 1984).

5. Issues that can adversely influence assessment & treatment Diagnostic overshadowing Diagnostic overshadowing Overemphasis on the intellectual disability at the expense of the psychiatric condition Overemphasis on the intellectual disability at the expense of the psychiatric condition Attention to symptomatology rather than signs (observed behaviour) Attention to symptomatology rather than signs (observed behaviour) Additional stigmatization Additional stigmatization (Luckasson et al, 1992; Reiss, Levitan, & Szysko, 1982).

6. Relevance to general practice Prevalence of ID – 1.8% of population (AIHW, 1998) Prevalence of ID – 1.8% of population (AIHW, 1998) Increasing life span - 50-60 years Increasing life span - 50-60 years Higher risk of physical and mental health problems Higher risk of physical and mental health problems Majority live in the community Majority live in the community with families / supported accommodation with families / supported accommodation Access generic health services Access generic health services

7. Prevalence: mental health problems 41% have a mental health problem 41% have a mental health problem Einfeld & Tonge (1996) Einfeld & Tonge (1996) Schizophrenia/delusional disorder Schizophrenia/delusional disorder 3 times higher than in general population 3 times higher than in general population Depression Depression 3 times higher in people with Down Syndrome 3 times higher in people with Down Syndrome Dementia Dementia 4 times more common than in general population 4 times more common than in general population

8. Types of mental health disorders Same range as in general community Same range as in general community Some types of developmental disability associated with specific conditions Some types of developmental disability associated with specific conditions Down Syndrome - depression, dementia Down Syndrome - depression, dementia Phenylketonuria - anxiety, depression Phenylketonuria - anxiety, depression Prader Willi Syndrome - psychosis, depression Prader Willi Syndrome - psychosis, depression Other problem behaviours/challenging behaviours - consider other factors Other problem behaviours/challenging behaviours - consider other factors Epilepsy common co-morbid condition Epilepsy common co-morbid condition

9. Clinical Presentation May be different to that of general population - especially those with severe/profound disability due to: May be different to that of general population - especially those with severe/profound disability due to: reduced cognitive abilities reduced cognitive abilities communication difficulties communication difficulties high prevalence of co-morbidity high prevalence of co-morbidity Some atypical clinical presentations: Some atypical clinical presentations: aggression aggression self injurious behaviour self injurious behaviour non compliance non compliance loss of skills loss of skills

10. Possible aetiology Organic causes Organic causes physical illness, pain, effects of medication physical illness, pain, effects of medication e.g. GORD, middle ear infection, sleep apnoea, psychotropics, e.g. GORD, middle ear infection, sleep apnoea, psychotropics, Psychiatric disorders Psychiatric disorders Behavioural phenotypes Behavioural phenotypes e.g. Prader Willi Syndrome e.g. Prader Willi Syndrome Environmental Environmental lack of choice, change in routine, frustration lack of choice, change in routine, frustration Life events - grief, loss, abuse Life events - grief, loss, abuse

11. Clinical Assessment: history History History of behaviour - where, when, precipitants/exacerbating / relieving factors; previous history of behaviour - where, when, precipitants/exacerbating / relieving factors; previous history new or changed behaviour, cyclic patterns new or changed behaviour, cyclic patterns accompanying behaviours accompanying behaviours past medical history / systems review past medical history / systems review medications: prescription/OTC/alternative medications: prescription/OTC/alternative functional abilities - esp. communication functional abilities - esp. communication life circumstances - recent change? life circumstances - recent change? family history - medical, psychiatric family history - medical, psychiatric

12. Clinical Assessment: history For reliability, may need multiple sources: patient if possible patient if possible simple short sentences, start with open-ended questions simple short sentences, start with open-ended questions family member / friend family member / friend formal carer/s formal carer/s other support people - day placement, respite care other support people - day placement, respite care health records health records behaviour observation chart behaviour observation chart

13. Behavioural measures Checklists eg. DASS 21; DBC Checklists eg. DASS 21; DBC Reports, files, Reports, files, Observational data eg. A-B-C Observational data eg. A-B-C Antecedents Antecedents Behaviour Behaviour Consequences Consequences

14. Sample Behaviour Chart

15. Clinical Assessment: examination/ investigations Full physical examination Full physical examination Mental state examination Mental state examination Investigations - as indicated Investigations - as indicated consider vision/hearing assessments consider vision/hearing assessments thyroid function tests thyroid function tests

16. Management Often need multidisciplinary approach Often need multidisciplinary approach e.g psychologist, psychiatrist, speech therapist e.g psychologist, psychiatrist, speech therapist Treat physical disorders Treat physical disorders May need to review medication May need to review medication Refer/ treat psychiatric disorders Refer/ treat psychiatric disorders Address environmental issues Address environmental issues structure, consistency structure, consistency Effective communication methods Effective communication methods Counselling and social support Counselling and social support MONITOR AND REVIEW MONITOR AND REVIEW

17. How to make the consultation work Good planning is essential Good planning is essential plan long consultation plan long consultation insist on all records accompanying patient insist on all records accompanying patient request carer with knowledge of patient to accompany request carer with knowledge of patient to accompany may need more than one consultation to obtain all information from variety of sources may need more than one consultation to obtain all information from variety of sources Give explicit written instructions/information Give explicit written instructions/information especially for prn medications especially for prn medications

18. Working with formal caregivers Issues Issues high turnover of staff high turnover of staff frequent use of casual staff frequent use of casual staff range of knowledge / experience / skills range of knowledge / experience / skills incomplete information often given incomplete information often given record keeping record keeping

19. Psychotropic medication: principles Comprehensive assessment first Comprehensive assessment first Where possible, treat the underlying condition, don’t merely suppress the behaviour Where possible, treat the underlying condition, don’t merely suppress the behaviour avoid using medication as a restraint avoid using medication as a restraint Consider non-pharmacological treatment options Consider non-pharmacological treatment options Medication is seldom the sole solution - other therapeutic modalities may be required Medication is seldom the sole solution - other therapeutic modalities may be required behavioural intervention, counselling, environmental changes behavioural intervention, counselling, environmental changes Baseline observations and reliable documentation of response to Rx is vital : checklists, rating scales Baseline observations and reliable documentation of response to Rx is vital : checklists, rating scales

20. Psychotropic medication: principles Continue medication only if documented improvement Continue medication only if documented improvement Response to medication may be idiosyncratic - start with small doses and watch for side effects Response to medication may be idiosyncratic - start with small doses and watch for side effects Consider reducing dose if symptoms absent for reasonable period Consider reducing dose if symptoms absent for reasonable period reduce slowly / may need extra support at this time reduce slowly / may need extra support at this time monitor and document response monitor and document response Adapted from: Einfeld SL “Guidelines for the use of psychotropic medication in individuals with developmental disabilities” Australia and New Zealand Journal of Developmental Disabilities, 1990 16(1):71-73

21. Psychotropic medication:side effects More vulnerable to CNS side effects More vulnerable to CNS side effects S/E can be missed/misinterpreted: S/E can be missed/misinterpreted: tardive dyskinesia may be mistaken for stereotypic behaviour tardive dyskinesia may be mistaken for stereotypic behaviour akathisia can be misdiagnosed as anxiety and neuroleptic dose increased akathisia can be misdiagnosed as anxiety and neuroleptic dose increased Beware paradoxical response to benzodiazepines - increased agitation Beware paradoxical response to benzodiazepines - increased agitation Seizure threshold lowered by some neuroleptics/antidepressants Seizure threshold lowered by some neuroleptics/antidepressants

22. Issues to consider Beware of “diagnostic overshadowing” Beware of “diagnostic overshadowing” Consider psychiatric disorders Consider psychiatric disorders ask about appetite, sleep patterns, tearfulness, hallucinations, delusions ask about appetite, sleep patterns, tearfulness, hallucinations, delusions Communication difficulties Communication difficulties Acquiescence/ nay saying Acquiescence/ nay saying Functional aspect of behaviour Functional aspect of behaviour attention seeking, protesting, escaping attention seeking, protesting, escaping Consent to treatment Consent to treatment

23. Resources Local DADHC office Local DADHC office Local mental health service Local mental health service Statewide Behaviour Intervention Service (SBIS) : Ph: (02) 8876 4000 Statewide Behaviour Intervention Service (SBIS) : Ph: (02) 8876 4000 Private practitioners eg psychologists, psychiatrists, speech pathologists Private practitioners eg psychologists, psychiatrists, speech pathologists NSW Developmental Disability Health Unit Ph: (02) 9808 9287 NSW Developmental Disability Health Unit Ph: (02) 9808 9287 Brain & Mind Research Institute (University of Sydney) Ph: (02) 9351 0799 www.bmri.org.au/cc_ptfmly.html Brain & Mind Research Institute (University of Sydney) Ph: (02) 9351 0799 www.bmri.org.au/cc_ptfmly.html

24. Summary High prevalence of mental health problems in people with developmental disability High prevalence of mental health problems in people with developmental disability Beware of “diagnostic overshadowing” Beware of “diagnostic overshadowing” Consider physical, psychiatric, psychological and environmental factors Consider physical, psychiatric, psychological and environmental factors Multiple approaches to management are required - medical, behavioural, environmental, social Multiple approaches to management are required - medical, behavioural, environmental, social

25. Case Scenario A Michael, 42 yrs Michael, 42 yrs Down Syndrome, mild level of ID Down Syndrome, mild level of ID Lives in group home Lives in group home “Not himself” for last 3 months “Not himself” for last 3 months losing skills- e.g. self care, independent travel losing skills- e.g. self care, independent travel work placement threatened - slow, forgetful work placement threatened - slow, forgetful not interested in social activities not interested in social activities irritable, aggressive irritable, aggressive

26. Case Scenario A … Wears glasses for myopia Wears glasses for myopia On thioridazine for “behavioural problems” - started 10 years ago, after moving into group home On thioridazine for “behavioural problems” - started 10 years ago, after moving into group home Father died of MI 18 months ago Father died of MI 18 months ago Case worker recently changed jobs Case worker recently changed jobs

27. Case Scenario A : differential diagnosis Sensory impairment Sensory impairment vision vision hearing hearing Hypothyroidism Hypothyroidism Depression Depression Neuroleptic induced symptoms Neuroleptic induced symptoms Alzheimer’s Disease Alzheimer’s Disease

28. Case Scenario B Phillip - 32 year old man Phillip - 32 year old man Down Syndrome – moderate intellectual disability Down Syndrome – moderate intellectual disability Lives with mother, older siblings moved out Lives with mother, older siblings moved out Works 2 days per week supported employment –fast food outlet Works 2 days per week supported employment –fast food outlet Psychiatrist treating for schizophrenia past two years Psychiatrist treating for schizophrenia past two years Slowed performance, loss of skills Slowed performance, loss of skills Reduced communication Reduced communication Aggressive behaviour – shouting at neighbour – unknown provocation Aggressive behaviour – shouting at neighbour – unknown provocation Talking to imaginary people Talking to imaginary people

29. Case Scenario B …. Falling asleep in waiting room 9am Falling asleep in waiting room 9am Father died when child – left taped message which Phillip listens to regularly Father died when child – left taped message which Phillip listens to regularly Grandmother died 2 years previously Grandmother died 2 years previously

30. Case Scenario B : differential diagnosis Behaviour of concern – aggression Behaviour of concern – aggression Depression Depression Schizophrenia Schizophrenia Fantasy Fantasy Grief Grief