ALZHEIMER’S ORGANISATIONS AGENTS OF CHANGE GLENN REES, CEO ADI CONFERENCE, LONDON 2012

ALZHEIMER’S ORGANISATIONS 10 YEARS OF CHANGE

DECADE OF CHANGE NATIONAL Documenting the dementia epidemic Quality of dementia care INTERNATIONAL Worldwide dementia epidemic Developing countries

TIME FOR REVOLUTION? NEGATIVE SOCIAL ATTITUDES ENDURE Stereotyping Loss of rights Stigma Social isolation HEALTH POLICY FAILS Not recognised as a chronic disease Treated as a natural part of ageing

TIME FOR REVOLUTION? The framework for development of dementia policy Evidence base for our revolution Communications and the use of social media

BUILDING BLOCKS FOR DEMENTIA POLICY PUBLIC HEALTH FRAMEWORK MAKE DEMENTIA A NATIONAL HEALTH PRIORITY EVIDENCE BASE: SOCIAL AND ECONOMIC IMPACT

A PUBLIC HEALTH FRAMEWORK AGED CARE HEALTH POLICY DEMENTIA Awareness Timely diagnosis Support and care Risk reduction Research

AWARENESS LIMITED UNDERSTANDING Symptoms beyond memory loss Affects younger people Common cause of death Symptoms develop decades before diagnosis Risk reduction

AWARENESS Greater awareness and understanding of legal rights Maintain autonomy and self-determination

TIMELY DIAGNOSIS Only 20-50% of people living with dementia are recognised in primary care Up to 80% of people with dementia do not yet have a diagnosis 3.1 years from symptoms to diagnosis in Australia A diagnosis of dementia often comes as a relief

SUPPORT AND CARE In Australia, 70% of dementia care is provided by the family RECOMMENDATIONS Consumer directed models of care Equitable and sustainable charges End of life care, advance care planning and palliative care Entitlement to services based on need Access to information and link workers Community services and respite Development of outcome standards

SUPPORT AND CARE: CARING FOR OLDER AUSTRALIANS REPORT ALZHEIMER’S AUSTRALIA IS ADVOCATING FOR Extra funding for dementia care Flexible and suitable respite Culturally appropriate dementia care Support for Younger Onset Dementia Co-ordination between Aged Care and Mental Health Systems

CONSUMER DIRECTED CARE Care planning Budget holding Service delivery The revolution: Empower the consumer

ACUTE CARE QUALITY OF CARE IN HOSPITALS People with dementia stay longer in hospitals Greater risk of hazards and poor outcomes May be more appropriately treated in alternative settings

PREVENTION: DIFFERING VIEWS NATIONAL INSTITUTE OF HEALTH Not enough rigorous scientific evidence Uncertainty about direction More research needed ALZHEIMER’S AUSTRALIA Good evidence for vascular risk factors No harm in advocating healthier lifestyles Not expensive

50% OF AUSTRALIANS DO NOT KNOW THAT THEY MAY BE ABLE TO REDUCE THEIR RISK OF DEMENTIA.

iPhone application developed by Alzheimer’s Australia with Bupa Over 170,000 downloads (5th Feb 2012) Downloaded in over 82 countries Android version in development

RESEARCH Dementia is the third leading cause of death in Australia behind heart disease and stroke But Government funding for dementia research falls behind far behind the other major diseases National Health and Medical Research Council funding for research on main chronic disease’s (2010-11).

RESEARCH IS AS IMPORTANT AS SERVICES AND SUPPORT IN ADVOCACY Less than 0.5% of the cost of dementia care is spent on dementia research in Australia

SO WHERE NOW? We know what needs to be done Passion and effective communication Advocacy through story-telling

STORYTELLING MEDIA AND COMMUNICATIONS Marketing and branding strategy Fight Dementia Campaign

FIGHT DEMENTIA CAMPAIGN PARLIAMENT HOUSE AUSTRALIA, 13 OCTOBER, 2011

New BrandING

SOCIAL MEDIA HIGH PROFILE PRESIDENT INNOVATIVE WEBSITE

VALENTINE’S DAY: WHAT WOULD YOU DO IF YOUR LOVED ONE COULDN’T REMEMBER YOU?

REVOLUTION We have the evidence National plans have shown the way Consumers must be empowered Communication, communication, communication Be positive

time for action www.campaign.fightdementia.org.au