Dementia, Research & Alzheimer’s Australia NSW

1. Dementia, Research & Alzheimer’s Australia NSW Brendan Moore General Manager – Policy, Research and Information Centre for Cognitive Disorders 29 April 2014

2. WHAT IS DEMENTIA? Dementia is a fatal, progressive, neurological disease of the brain that causes a decline in normal functioning. There are many different causes of dementia. It may cause a loss of memory, intellect, rationality, social skills and what would be considered normal emotional reactions.

3. WHO GETS DEMENTIA? Most people with dementia are older, but it is important to remember that most older people do not get dementia. It is not a normal part of ageing. Dementia can happen to anybody, but it is more common after the age of 65 years. People in their 40s and 50s can also have dementia. This is called younger onset dementia.

4. WHAT ARE THE EARLY SIGNS OF DEMENTIA? • The early signs of dementia are often subtle and vague • Early symptoms may vary a great deal • Common symptoms include: • Progressive and frequent memory loss • Confusion • Personality change • Apathy and withdrawal • Loss of ability to do everyday tasks

5. WHAT IS THE DIFFERENCE BETWEEN DEMENTIA AND ALZHIEMER’S DISEASE? DEMENTIAis the umbrella term to describe a set of symptoms that are caused by a number of different diseases. ALZHEIMER’S DISEASE is one of those diseases.

6. There are over 100 different types of dementia. The most common type is Alzheimer’s disease. In Australia this accounts for around 50-70% of all types of dementia. TYPES OF DEMENTIA

7. COMPARISON OF HEALTHY / UNHEALTHY BRAIN

9. DEMENTIA PREVALENCE: AUSTRALIA

10. YEAR: 1971

11. YEAR: 2010

12. YEAR: 2050

13. THE ‘SUPER AGED’ INCREASING Currently in Australia, there are: Approx3 million people over 65 Approx400,000 people over 85 In 2014 – Approx 4,000 people are over 100. That’s a town the size of FORBES By2050there will be approximately 70,000 people over 100 That’s a town the size of COFFS HARBOUR

14. Doubles every 5 years past 60 years: PREVALENCE Source: Access Economics: Projections of dementia prevalence and incidence in NSW 2009 - 2050

15. WEEKLY INCREASE IN NUMBERS 2014: 1,700 new cases / week 2030: 3,600 new cases / week 2050: 7,400 new cases / week

16. TOP 10 PREVALENCE BY NSW ELECTORATE 2013-2050

18. WHAT DO AUSTRALIANS KNOW ABOUT DEMENTIA? (IPSOSREPORT) • 60% of Australian adults have a family member with dementia • 7 in 10 know ‘very little’ about dementia’ • Over 25% surveyed believe dementia is a normal part of ageing • 25% said they find dementia frightening • Almost 50% didn’t realise dementia was fatal • 80% said they would like to know more about dementia

19. NUMBER ONE HEALTH CARE COST Dementia is thenumber one heath care cost of the ‘big five’ chronic conditions of the new century. Spendingon dementia will outstrip spending on the four other major diseases: respiratory diseases digestive diseases cardiovascular diseases diabetes

20. ECONOMICCOST • Current cost of dementia to Australian health and aged care sectors is at least $4.9 billion per annum • By 2060 the cost of dementia is projected to be $83 billion (in 2006-7 dollars) • The economic cost of dementia globally is $600billion • If dementia was a country it would be the world’s 18th largest economy – Australia is the 12th largest

21. DEMENTIA JOURNEY • Person and others notice symptoms – confusion, sadness, distress • Diagnosis of dementia – often the greatest time of grief for the person, their carer and family • Clinical and social intervention to assist • Support to live at home as long as possible • Behaviours and psychological symptoms of dementia may worsen • Residential care – 1-5 years • Palliation and death

23. STIGMA • Stigma is due to fear and misinformation • Dementia is the 2nd most feared health condition after cancer • Stigma is a barrier to people seeking information about dementia and a diagnosis • BUT people with dementia can have quality of life - if they are valued, included, supported

24. WHAT ANNOYS YOU ABOUT DEMENTIA?

25. CURRENT RESEARCH FUNDING Unless researchers can find effective treatments for dementia, spending on dementia will outstrip any other health condition by 2060

26. What types of research are there? When it comes to dementia there are four issues: Cause – Medical research Consequence – Medical or social research Course – Medical, social, evaluation or action Control – Social, action or evaluation

27. Why do we need to conduct research? No consensus on causes Need better understanding of the epidemiology: at extremities of age, CALD, Aboriginal, development delay. Is there more than one susceptibility gene for non-familial forms of dementia? There are no treatments that reverse or halt dementia. No simple, accurate method for diagnosing very early dementia. It is not know which, when, and by how much, risk factors need to be modified in order to prevent dementia.

28. Why do we need to conduct research? The best models to meet care needs have not been identified to maximise quality of life and cost effectiveness. Need to advance our knowledge of the experience, perspectives, and ways of communicating at different stages of the disease – from the voice of people with dementia. It is not clear how to best train nurses, doctors, allied health and other paid carers to provide better care and impact of the disease. We know very little about how to translate the best evidence into practice.

29. What work is being done in medical research? This is the main area that people focus on to find: The cause and a cure Progression of dementia – ways to change this and detect it earlier Treatment/s – psycho-social altering Risk factors Epidemiology

30. What social research has AlzNSW done? The Policy and Research Unit has written the following reports: Building dementia and age-friendly neighbourhoods Addressing the stigma associated with dementia Driving and dementia Dementia and planning ahead Moving into residential care Head injuries and risks of dementia in football players • Living alone with dementia • Dementia in Regional NSW • Dementia in Prison • Interaction of hospital and community care services

31. What social research is in the pipeline? Financial abuse of people with dementia Meeting the Transport Needs of People with Dementia - including a new booklet in collaboration with the NRMA about the issue of driving cessation Dementia in retirement villages Benefits of physical activity Preventing malnutrition in people with dementia living at home

32. Why does Alzheimer’s NSW do social research? • Consumer oriented organisation • Peak organisation • Consumers are the ‘moral owners’ of Alzheimer’s NSW • Consumers want to be involved • Adds legitimacy to our research and policy work

33. ALZHEIMER’SAUSTRALIA NSW WHO ARE WE? We are the peak body advocating for all people with dementia, their carers and families. We work to reduce the impact of dementia through policy, research, education and services such as counselling and the National Dementia Helpline. WHERE ARE WE? North Ryde, Newcastle, Port Macquarie, Bega, Sutherland, Moss Vale, Coffs Harbour, Tweed HELPLINE:1800 100 500

34. WHAT DO WE DO? • AlzNSWprovides services for people with dementia, their carers and families • We conduct research to influence policy and service delivery • We conduct fundraising activities

36. EZEKIEL AND HIS GRANDMUM

37. WHAT SHOULD PEOPLE KNOW ABOUT DEMENTIA?

38. THANK YOU