Getting Dementia out of the Closet Glenn Rees CEO, Alzheimers Australia

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Getting Dementia out of the ClosetGlenn
ReesCEO, Alzheimers Australia
24th Conference of ADI2009 Singapore
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The Context

Alzheimers Australia has broadened its
interests beyond those of an organisation with a
narrow disease focus on dementia to a broader
policy interest in aged care, the linkages
between dementia and other conditions and
consumer empowerment.
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Themes

• Promote awareness that dementia can strike at any
  age.
• Advocating for consumer choice in services
  through consumer directed care.
• New partnerships.

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Younger Onset Dementia

• Low awareness at the political and community
  level.
• No understanding of the special issues that face
  this group in social and economic terms.
• Younger Onset Dementia Summit co-hosted with
  Parliamentary Friends of Dementia.
• The Summit Communiqué.

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Summit Communiqué
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Priority Areas
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Intellectual Capital
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Intellectual Capital
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Consumer Directed Care

• Consumer directed care is a term used to refer to
• obtaining care for older and younger people under
• which the person who needs care, with their
  family
• carer, is given direct control over the resources
• provided for their care.

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Choices

• Choice can be provided by giving the
• person a sum of money which they can
• spend as they wish or a budget which
• is managed by an agency.

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Access to Responsive Services

• Most services in Australia for people with
  dementia are for older people.
• The CDC model will be helpful in ensuring that
  responsive flexible services are developed for
  people with younger onset dementia and their
  carers.
• This is important in respect of respite care
  services, care packages and residential care
  services.

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Consumer Directed Care

• Consumer directed care is integral to our
  strategic approach in four main ways

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Consumer Directed care

• In broadening our role beyond that of a chronic
  disease organisation to advocacy for reform of
  aged care services.
• Making the point that life does not stop with a
  diagnosis of dementia and that people with
  dementia want to continue for as long as possible
  in social engagement and lifetime activities
  supported by responsive and flexible services.
• Reinforcing the view that people with dementia
  with their carers are able to express their
  wishes and should have the choice to take greater
  responsibility for the care they receive.
• Achieving more flexible services that respond to
  the needs of people with dementia of any age

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Partnerships

• Partners invited to the Summit
• Dementia can be the consequence of many other
  chronic conditions.
• Development of new partnerships with the
  appropriate National peak organisations.

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Partnerships

• Many areas for collaboration e.g.
• Promoting awareness
• Establishing a national approach to genetic
  testing and counselling
• Improved access to care services
• Dementia research
• Advance care planning

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Conclusion

• We believe we have some of the elements of the
• strategy in place to get the issue of younger
  onset
• dementia out of the closet and acted upon at the
• political level.
• Visit www.alzheimers.org.au/youngeronsetdementia