Ageing and Dementia in People with Intellectual Disability Department of Developmental Disability Neuropsychiatry Prof. Julian Trollor Head, Department of Developmental Disability Neuropsychiatry [email protected] 3dn.unsw .edu.au @3DN_UNSW Acknowledgements/Declarations Funding: Core • Ageing Disability and Home Care | Family and Community Services NSW • UNSW Medicine Funding: Research and Projects • NSW Ministry of Health & Related Organisations – MHDAO, MH Kids, HETI, ACI ID Network • Australian Government Department of Health and Ageing • Australian Research Council (ARC) • National Health and Medical Research Council (NHMRC) • NSW Institute of Psychiatry • Autism CRC 3dn.unsw .edu.au @3DN_UNSW Disclosures 3dn.unsw .edu.au @3DN_UNSW MOVEMBER https://au.movember.com/team/2100485 Our Motivation Please support us as we turn ugly and get moving for a good cause. Compared to men in the general population, men with intellectual or developmental disabilities: - experience big barriers to accessing good health care - have a higher risk of mental health problems - are at risk of earlier death from preventable causes Team 3DN want to raise awareness of these issues. For more information see http://3dn.unsw.edu.au/ 3dn.unsw .edu.au @3DN_UNSW Session 1 Intellectual Disability, Health and Ageing ID and its causes Health and ID Mental Health and ID Syndrome specific health issues Ageing and ID 3dn.unsw .edu.au @3DN_UNSW What is Intellectual Disability? • Disorder with onset in the developmental period – Deficits in intellectual functions (Below average intelligence, IQ of <70, ie <2 SD below mean) – deficits in adaptive behaviours – onset before the age of 18 • Intellectual Developmental Disorder • About 1.8% of the population • About 400,000 Australians • About 125,000,000 individuals world wide 3dn.unsw .edu.au @3DN_UNSW Some Causes of Intellectual Disability Prenatal Perinatal Postnatal Chromosomal disorders Intrauterine: placental Head injury insufficiency; prematurity; Syndrome disorders obstetric trauma Infections & post-infectious Inborn errors of metabolism Neonatal: intracranial Degenerative disorders haemorrhage; respiratory Developmental brain distress; head trauma; Seizure disorders abnormalities kernicterus Toxic metabolic disorders eg Environmental factors lead poisoning eg maternal malnutrition; placental insufficiency; fetal Malnutrition alcohol syndrome; varicella infection; irradiation Environmental deprivation 3dn.unsw .edu.au @3DN_UNSW Classification 100 • Continuous, intensive assistance – communication, personal care, accessing • ReadingTravelservices – possible and& facilities writing with specific • Expressive• Maytraining live communication and travel independently usually reliant on gestures,• MayPlanning be facial employed & organisingexpression their and livesbody language • Importance• RelationshipsManaging of money,objects – various personal& visual aides care &in communicationinterpersonalhygiene and community • Importance• PossibleImportant of difficulty enduringrelationships understanding relationships – recognise and 1 form• subtle↑ closeimportance socialbonds rules ofwith visual &key boundaries aidspeople in 1 communication1 1. Centre for Developmental Disability Health Victoria 2008, Factsheet: Working with people with intellectual disabilities in healthcare settings; http://www.cddh.monash.org/assets/documents/working-with-people-with-intellectual-disabilities-in-health-care.pdf 3dn.unsw .edu.au @3DN_UNSW Historical Changes & Impacts • Benefits of deinstitutionalisation – Social inclusion – Enhanced opportunities • Other impacts of deinstitutionalisation – Historical separation of health and disability services – Erosion of expertise within health sector – Loss of educational and professional focus • Subsequent service development – Enhanced behavioural support within disability services – Limited development of health services and policy 3dn.unsw .edu.au @3DN_UNSW Impact of ID – Behaviour • Higher rates of behavioural problems • Relationship to communication difficulties – Behavioural change can be: • A communication of needs • A response to environmental and situational factors • A manifestation of a medical/psychiatric condition • Reinforced by learning • Behavioural phenotypes 3dn.unsw .edu.au @3DN_UNSW Impact of ID – Health • Higher morbidity2,3 • Lower rate of detection and treatment2,3 1. Bittles et al. 2002; 2. Lennox & Kerr 1997; 3. Beange, McElduff & Baker, 1995 3dn.unsw .edu.au @3DN_UNSW Health Challenges – Physical Health • Dental disease (7x) • Mobility problems • Vision impairment & eye • Multiple chronic disorders (7-20x) complex disorders • Hearing impairment • Polypharmacy • Thyroid problems • Lifestyle related • Epilepsy o Overweight & obesity • GERD o Constipation • Osteoporosis o Physical fitness • Hospitalisation (2x) • Serious injury (2x) 3dn.unsw .edu.au @3DN_UNSW Why are People with an ID at Higher Risk of Ill Health? • Multiple barriers to health care: – Less likely to express health concern or seek help – Reduced insight and awareness – Reduced supports and self advocacy – Communication – Lack of awareness of carers • Atypical presentations – Signs of health condition or mental disorder are confused with a feature of ID or a behavioural problem • Limited specialised services for people with ID • Limited skills in general medical workforce • Limited access to prevention, early intervention strategies • ID specific health needs 3dn.unsw .edu.au @3DN_UNSW Mental Health of People with an ID • People with an intellectual disability experience an over-representation of mental disorders – Conservative estimates for adults/children with ID 2.5/3-4x • At any one time, an estimated 20-40% of people with an ID will be experiencing a mental disorder of some kind. • Access to mental health supports and treatments is limited • High impact for people with ID, families and carers • Complexity • Multiple vulnerabilities 3dn.unsw .edu.au @3DN_UNSW Health Challenges– Mental Health • People with ID experience: – the full range of mental disorders seen in adults without ID – higher rates of mental disorder (~40%1 v ~20%2 ) – increased prevalence of mental disorder with increasing disability1 – psychopathology that varies with level of disability1 1. Cooper et al., 2007; 2. Slade et al., 2009 3dn.unsw .edu.au @3DN_UNSW Things that affect mental health Biological •Genes Physical Appearance •Changes in the brain Sleep problems Motor impairment •Seizures & medications Intellectual Disability •Chemicals/Hormones in Brain Intellectual disability Temperament •Physical health problems/pain Social Psychological •Relationships & •Thinking style Interactions •Coping skills •Past events •Communication •Living/Work/Schooling skills situations School & other achievements; Communication & interpersonal skills 3dn.unsw .edu.au @3DN_UNSW Health Challenges – eg Down Syndrome1 • Visual impairment, • Depression cataracts • Alzheimer’s disease • Hearing impairment • Sleep apnoea • Hypothyroidism • Increased susceptibility to • Epilepsy infections • Congenital heart defects • Coeliac disease (40-50%) • Blood dyscrasias • Atlantoaxial instability • Childhood leukeamia • Skin disorders, alopecia, eczema 1. Lennox & Eastgate, 2004. Adapted with permission from Nick Lennox 3dn.unsw .edu.au @3DN_UNSW Health Challenges – eg Tuberous Sclerosis1 • Retinal tumours • Hypertension • Sleep problems • Kidney & lung • Epilepsy hamartomas • Cerebral astrocytomas • Polycystic kidneys • Rhabdomyomas • Dental abnormalities – Eye • Skin lesions – Bone • Autism Spectrum disorders – Liver • ADHD • Anxiety Disorders 1. Lennox & Eastgate, 2004. Adapted with permission from Nick Lennox 3dn.unsw .edu.au @3DN_UNSW Health Challenges – eg Fragile X Syndrome1 • Visual impairment • Scoliosis • Hearing impairment • Congenital hip dislocation – Recurrent ear • Hernias infections • Autism Spectrum • Epilepsy disorders • Aortic dilation, Mitral • Anxiety Disorders Valve prolapse • Attention • Connective tissue Deficit/Hyperactivity dysplasia 1. Lennox & Eastgate, 2004. Adapted with permission from Nick Lennox 3dn.unsw .edu.au @3DN_UNSW Ageing: an Important Issue for People with ID • There is a rapid ageing of the ID population – does not extend to the ‘very old’ (cf general population) – Life expectancy varies with disorder and level of ID • Ageing with ID carries specific health implications • A small decline in cognition can translate to a large decline in function • Impact on carers • Service and cost implications 3dn.unsw .edu.au @3DN_UNSW Current Status: Services and Supports Services and supports for older people with ID are characterised by: • Limited age-specific capacity in health and disability services • Health and disability professionals with limited training • Confused service models • A growing demand for age-related services • A growing demand for assessment of possible cognitive decline 3dn.unsw .edu.au @3DN_UNSW Mortality in People with an ID • Death as an outcome • Health inequalities • Preventable causes 3dn.unsw .edu.au @3DN_UNSW Aims • To compare age-standardised mortality rates (ASMRs), Comparative Mortality Ratios (CMRs) and Years of Productive Life Lost (YPLL) in people with an ID in NSW to the general NSW Population • To determine underlying cause of death, including for preventable deaths, and compare this to the Australian population • To determine the proportion of preventable deaths in people with an ID in NSW, Australia 3dn.unsw .edu.au @3DN_UNSW Methods: Linkage and Mortality • Linkage performed independently