January 2006 1

Getting Dementia out of the ClosetGlenn Rees

CEO, Alzheimer’s Australia

24th Conference of ADI2009 Singapore

January 2006 2

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.

January 2006 3

Themes

• Promote awareness that dementia can strike at any age.

• Advocating for consumer choice in services through consumer directed care.

• New partnerships.

January 2006 4

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.

January 2006 5

Summit Communiqué

January 2006 6

Priority Areas

January 2006 7

Intellectual Capital

January 2006 8

Intellectual Capital

January 2006 9

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.

January 2006 10

Choices

Choice can be provided by giving the person a sum of money which they canspend as they wish; or a budget whichis managed by an agency.

January 2006 11

January 2006 12

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.

January 2006 13

Consumer Directed Care

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

January 2006 14

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

January 2006 15

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.

January 2006 16

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

January 2006 17

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