Health for Active Ageing in Older People with Intellectual Disabilities

Healthy Ageing

Lifestyle choice, planning and support and opportunities for self expression

Maintainance and strengthening of social networks

Community participation

Maintainence of skills

Promotion of health and healthy lifestyle

Bigby, C., et al., Ensuring Successful Ageing: Report of a National Study of Day Support Service Options for Older Adults With a Disability. 2001, Latrobe University, School of Social Work and Social Policy: Melbourne.

Physical and Mental Health

Active Ageing

Defining Older Age In Intellectual Disability • 60- 65 years

General • 70 years Population

Intellectual Disability

• 40-50-55 years in ID studies • >65 years in recent studies • >50 years WHO • > 40 years

The Good News - From Finland 300 250

Profound Severe

200 150

Moderate

Some people with mild ID are living as long, if not longer than the general population Women in the majority from age 60 cf 35 in general population

Mild Total

Oldest woman 97 years

100

50 0

Oldest man 95 years High adaptive functioning Few physical problems

Patja, K., et al., Life expectancy of people with intellectual disability: A 35-year follow-up study. Journal of Intellectual Disability Research, 2000. 44(5) 591-599.-year follow-up study. Journal of Intellectual Disability Research, 2000. 44(Pt 5): p. 591-9.

Selective Mortality • • • • • • • •

Youngest age Severe ID Minimal or no mobility Limited or no feeding ability No toileting skills/incontinence Sensory impairment Epilepsy Serious medical conditions

• Down Syndrome • Cerebral Palsy • Prade Willi Syndrome

Factors Associated with Premature Death

Healthy Survivors

• Less people with Down Syndrome, Prader Willi Syndrome • More females • More mild ID • Less physical health problems • Higher adaptive functioning • population studies - increase in adaptive functioning with age • Adaptive functioning declines after age 74 • toileting, dressing, grooming, eating, language, reading, writing

Ageing in Intellectual Disabilities General ageing processes • Natural physiological process of decline in cell repair and renewal • Results in loss of cellular structure and organ function over time

Individual variation General age related conditions Health in earlier stages of life impacts health at later age Interaction of lifelong disability and ageing Syndrome Specific Ageing • • • • •

Premature ageing Patterns of ageing Pathological mechanisms Targeted inteventions Practice guidelines

9 Ds of Ageing physical Decline

secondary Disability

age related Diseases Drugs Depression Delirium

Dementia Down syndrome and other syndrome specific ageing Death

Systematic Lifelong Preventive Healthcare Health and healthy life style promotion

Interventions for promoting healthy ageing and longevity

Health surveillience / Annual health assessments

Identification and management of risks

Common Age Related Decline and Disorders in People with Intellectual Disabilities

Musculoskeletal Decline

Musculoskeletal Pain Arthritis •Spine •Hips and Knees •Shoulders •Hands

Other Fractures

Vertebral crush fractures

Contractures

OsteoArthritis

Abnormal joints Lax ligaments Hypotonic and weak muscles Lifeterm misalignment Obesity Down syndrome Cerebral palsy

Impaired mobility

Impaired functioning

Pain

Behaviour change

Slowing

Falls Risk Epilepsy

Vitamin D deficiency Hemiplegia

Low muscle strength and poor balance Other neurological disorders • Parkinson’s disease • Peripheral neuropathy

Agitation, restlessness

Advancing Age

Medications

Dementia

Impaired vision

• Sedating • Benzodiazepines • Antipsychotics • EPSE • Drop blood pressure • Anticholinergics cause confusion

Postural hypotension

Wagemans AMA Cluitmans JJM Falls and Fractures: A Major Health Risk for Adults With Intellectual Disabilities in Residential Settings Journal of Practice and Policy in Intellectual Disability 3(2) 136-138 (2006)

Falls are a major cause of injury, disability and death

Osteoporosis increases risk for fractures Vitamin D deficiency

Hormonal insufficiencies

Smoking Down syndrome Lack of weight bearing exercises

• Anticonvulsant medications • Lack of sunshine • Hypogonadism • Amenorrhoea • Can be secondary to psychotropic medications • Early menopause • Thyroid disease

Falls and Balance Clinic Exercise • Muscle strength • Balance

Footwear Physiotherapy Assessment Walking/balance aids Vitamin D replacement Medication review

Vision Assessment and Correction Visual perception Environment • • • •

Steps Rugs Uneven ground Lighting

Reporting/Monitoring

Hearing and Vision Assessments Every 1-2 years Hearing and vision impairments very common

Hearing impairment

Especially common in people with severe ID

Vision impairment

Especially common in older people with Down syndrome ` 2/3 Increase with age

• social isolation • depression • mistake for dementia

• anxiety • falls, fractures, death • problems with steps, curbs, transitions

Hearing aids Glasses Cataract surgery

van Splunder, J., J. S. Stilma, et al. (2006). "Prevalence of visual impairment in adults with intellectual disabilities in the Netherlands: cross-sectional study. ." Eye 20(9): 1004-10. Meuwese-Jongejeugd, A., M. Vink, et al. (2006). "Prevalence of hearing loss in 1598 adults with an intellectual disability: Cross sectional population based study." International Journal of Audiology 45(11): 660 - 669.

Cancer in Older People with Intellectual Disabilities Different risk profiles Smoking rates less/more than general population Alcohol consumption less/more than general population Higher rates of Oesophageal cancer • GORD/Reflux • High rates in pop. ID • Preventable

Higher rates of Stomach cancer • Helicobacter pylori infection • Gastritis and ulcers • Infectious disese • High rates in pop. ID • Preventable

Syndrome Specific Ageing Increasing longevity of people with intellectual and developmental disabilities

Illuminating the natural history of ageing for

specific syndromes such as cerebral palsy

and

genetic disorders such as Down syndrome

Need to consider specific early life preventative and later life care

Ageing and Cerebral Palsy Decreased

Increased

Osteoporosis

• Mobility • Balance

• Pain • Fatigue • Deconditioning • Spasticity, contractures • Falls • Fractures

• Activity levels, • Weight bearing activities, • Nutrition • Long term use of anticonvulsants and other psychotropics

Causes of Death in Cerebral Palsy Impaired ability to cough Oral motor dysfunction with impaired chewing, swallowing, and gag reflex

Aspiration

Aspiration Pneumonia Kyphotic Posture Poor gastro oesophageal sphincter control

Reflux and Oesophagitis

Oesophageal Cancer

Ageing in Down syndrome

Non AD Morbidity of Older People with DS Earlier Onset of Age Related Disorders Older DS shorter and more obese Impaired functional and sensorimotor performance •Muscle weakness •Slower walking speed •Balance •Range of studies by Carmeli and colleagues

Musculoskeletal •Osteoporosis (Centre et al 1998, Angelopolou et al 1999) •Osteoarthritis (Hresko et al. 1993).

Earlier onset menopause (Carr et al 1995, Schupf et al 1999) Sensory impairments •High risk of hearing impairment, increases with age •50 62% (Meuwese-Jongejeugd et al. 2006) •Increasing vision impairment and blindness with age •~1/3 % vision impairment > 50years •~2/3 vision impairment > 50 years and severe ID •Blindness ~2.6% 50 years (van Splunder et al 2006)

Delirium

Delirium: Acute and Subacute Brain Syndrome Acute Brain Syndrome

Common Causes

• Onset over a few days but can continue for months • Fluctuating level of confusion • Hallucinations and Delusions • Due to medical illness or medications

• Chest Infections • Urinary Tract Infections • Medications • Polypharmacy • Anticholinergic medications

Seek Urgent Medical Review

Subacute Brain Syndrome

High Death Rates

Drug Induced Delirium 10–40% of all delirium Associated with polypharmacy

Benztropine Anticholinergic medications for incontinenct Incontinence or Incompetence

Ageing and Pharmacokinetics Loss of lean body mass, and liver and renal impairments (Alagiakrishnan & Wiens, 2004).

Consideration needs to be given to gradual change in capacity to metabolise and excrete medications associated with ageing as being responsible for gradual decline in functioning and cognition. kidneydiseaseweb.com http://www.life123.com/health/weight-loss/fattyliver/fatty-liver-symptoms.shtml

Depression and Other Mental Ill Health in Elders with Intellectual Disabilities Image from Feeling Blue. Books Beyond Words. Gaskell

Psychopathology Adults vs Elders 60%

Younger

52%

50%

Elderly

38%

40%

31%

30%

26%

23% 16% 16%

15% 15%

20% 10%

8%6%

3%3%

4%

Data from Cooper 1998 JIDR

a De me nti

PD D

y An xie t

tic Ps yc ho

Af fec tiv e

rde r rD iso

Be ha vio u

No n

e

0%

Psychotropic Drug Use Adults vs Elders 66%

70%

20-39 years

60%

50% 50%

42%

55+ years

40%

26%

30%

23% 20%

18%

20%

8%

10%

5%7%

10% 7%

13% 8%

id

ep re ss an A nt ts ic on vu ls an ts A nx io ly tic s

m iu th Li

A nt

ip

ar ki n

so n

ia ns

ic s ep t

N eu ro l

A nt

A ll

Ps yc h

ot

ro p

ic s

0%

Pary 1993 AJMR Pary 1995

Archeological Psycho-Pharmacology Why is this person on these medications?

Does this person have a documented psychiatric diagnosis? Is there documented evidence for this diagnosis? Is the diagnosis correct

Has a psychiatric diagnosis been missed. ? Is this person on chemical restraint for aggressive behaiovur raather than specific treatment for bipolar disorder?

Is the person “old fashioned” Antipsychotics? Antidepressants? Anticonvulsants?

Any side effects? Sedation? Movement disorder? Cognitive impairment? Hormonal effects?

Is this person on depot antipsychotics? Do they take other medications by mouth?

Depression in Older Age Older population, higher life time rate of depression Strong relationship between depression, self esteem, social engagement, disruptive life events in adults with intellectual disabilities No depression or treatment of depression associated with better cognition Relationship to brain disorder • Vascular changes • Association with dementia

Depression and dementia results in higher levels of disability than dementia alone

Dementia

Prevalence of Dementia in People with Down Syndrome cf People with Intellectual Disability cf General Population 1 0.9 ID (3)

0.8 0.7 0.6 0.5 0.4 0.3 0.2

Down

Down Syndrome (1,2) Syndrome

Australian Population (4)

Non DS ID

DS1 DS2 DS3 ID1 ID2 General

0.1 0

1. Lai, F. Williams, R. 1989; 2. Schupf et al 1989; 3. Coppuss et al 2006 4. Cooper, SA. 1997 JIDR; 5. Strydom et al 2007 6. Jorm et al 1987

Risk Factors for Dementia in ID Age Seizures – poorly controlled

• Increases with age

• Poor controlled, neurotoxic

Head injury – cause of ID, falls, SIB

• Tauopathy in American Football players

Congenital malformations

• Animal models of prenatal brain insults

Limited cognitive reserve Poor control of vascular risk factors

• Vascular Dementia as well as Alzheimer’s disease

Syndromal specific

• HT, DM, hyperhomocysteinaemia, hyperlipidaemia, vascular abnormalities

Delaying Cognitive Decline and Dementia 3 City Studies: Bordeaux, Dijon and Montpellier Life Style • Crystallised intelligence / What you have learnt • Mentally stimulating activites • *Social engagement • *Physical exercise • *Not Smoking • *Limited Alcohol * Other Studies

Health Care/Treatment

Nutrition • Fruit and vegetables • Dietary fibre • B vitamins • Olive oil • Omega-3 fatty acids

• • • •

High cholesterol Diabetes Hypertension Depression

Death and Dying

End of Life Care and Decision Making Who makes these decisions if there is no next of kin?

When to make the decisions? Not for rescusitation orders Emergency care plans in group homes Care of support workers

Care of peers

Questions What impact does poor health have on the ideal of active ageing? What impact does active ageing have on health? What is the evidence? Does the prevalence of disorders in older adults with ID differ from the general popuation? If so why? How does this impact upon health monitoring, service provision, training of clinicians?

Health in older age reflects health and preventive care at younger age. What preventive health programs need to be put in place in earlier life to minimise impact on ageing on •Musculoskeletal impairments and pain? •Sensory impairments •Vascular disease? •Cognitive decline and dementia ?

Do you have examples of programs in action? For example national health assessment schemes or healthy life style promottion, and choice In countries where health care of older people with intellectual disabilities is provided through generic health and medical services what are the barriers to providing equitable access to informed clinicians. What role could geriatricians play in assessment and management of complex health care needs in older age?

What training do doctors and other health care clinicians require? Do we need to improve the evidence base, eg the epidemiology of health in older adults, factors impacting upon health? How do we address mandatory requirements of training through colleges, and medical accreditation agencies.