1. January 20061 Getting Dementia out of the Closet Glenn Rees CEO, Alzheimer’s Australia 24 th Conference of ADI 2009 Singapore

2. January 20062 The Context Alzheimer’s Australia has broadened it’s 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.

3. January 20063 Themes Promote awareness that dementia can strike at any age. Advocating for consumer choice in services through consumer directed care. New partnerships.

4. January 20064 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.

5. January 20065 Summit Communiqué

6. January 20066 Priority Areas

7. January 20067 Intellectual Capital

8. January 20068 Intellectual Capital

9. January 20069 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.

10. January 200610 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.

11. January 200611

12. January 200612 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.

13. January 200613 Consumer Directed Care Consumer directed care is integral to our strategic approach in four main ways

14. January 200614 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

15. January 200615 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.

16. January 200616 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

17. January 200617 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/youngeronsetdementiawww.alzheimers.org.au/youngeronsetdementia