The challenges of increasing life expectancy in people with intellectual disability

1
The challenges of increasing life expectancy in
people with intellectual disability

• Prof. Alan Bittles
• Centre for Human Genetics
• Edith Cowan University

2
Health-based electronic data linkagein the study
of intellectual disability

• Disability Services Commission Database
• Hospital Morbidity Register
• Deaths Register
• Cancer Registry
• Mental Health Notifications
• Medicare
• Pharmaceutical Benefits Scheme

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Benefits of health-based electronic data linkage

• Allows the collection and construction of
• comprehensive databases on specific disorders,
  and the
• compilation of health profiles for specific
  individuals.
• This information can then be made available to
• clinicians, genetic counsellors, the parents and
  carers of
• affected people, and genetic support groups.
• With proper safeguards, the data also can be
  used as an
• invaluable research tool, e.g., in investigating
  common
• and rare genetic causes of intellectual
  disability.

4
Intellectual disability and life expectancy
5
Life expectancy, 1900-2000 Down syndrome vs the
general Australian population
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Implications of ageing for people withDown
syndrome and their carers

• With advancing age affected persons experience
  sensory loss, and often exhibit
  obesity/inactivity.
• Besides general health concerns, specific medical
  conditions include thyroid disorders, epilepsy,
  cardiac problems and Alzheimers disease.
• There is a strong probability that affected
  persons will outlive their parent(s).
• Who then will take responsibility for their
  housing, social and health care needs?