DEMENTIA,
RESEARCH & ALZHEIMER’S
AUSTRALIA NSW
Brendan Moore
General Manager – Policy, Research
and Information
Centre for Cognitive Disorders
29 April 2014
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.
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.
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
WHAT IS THE DIFFERENCE
BETWEEN DEMENTIA AND
ALZHIEMER’S DISEASE?
DEMENTIA is 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.
TYPES OF DEMENTIA
Types of dementia in Australia - Jorm & Henderson ABS
Fronto Temporal Lobar
Degeneration
9%
Dementia w ith Lew y
bodies
10%
Mixed Alzheimer's &
Vascular dementia
10%
Vascular dementia
10%
Others (incl w ith
Huntintons, Parkinsons,
etc)
6%
There are over 100
different types of
dementia.
Alzheimer's disease
55%
The most common
type is Alzheimer’s
disease.
In Australia this
accounts for around
50-70% of all types of
dementia.
COMPARISON OF
HEALTHY / UNHEALTHY BRAIN
DEMENTIA PREVALENCE:
AUSTRALIA
YEAR:
1971
YEAR:
2010
YEAR:
2050
THE ‘SUPER AGED’ INCREASING
Currently in Australia, there are:
• Approx 3 million people over 65
• Approx 400,000 people over 85
• In 2014 – Approx 4,000 people are over 100.
That’s a town the size of FORBES
• By 2050 there will be approximately 70,000
people over 100
That’s a town the size of COFFS HARBOUR
PREVALENCE
Doubles every 5 years past 60 years:
Prevalence
Age
Male
Female
60-64
1.2%
0.6%
65-69
1.7%
1.3%
70-74
3.5%
3.3%
75-79
5.8%
6.3%
80-84
85-89
12.1%
21.1%
12.9%
24.4%
90-94
31.5%
35.7%
95+
37.2%
47.3%
Source: Access Economics:
Projections of dementia prevalence
and incidence in NSW 2009 - 2050
WEEKLY INCREASE IN
NUMBERS
2014: 1,700 new cases / week
2030: 3,600 new cases / week
2050: 7,400 new cases / week
TOP 10 PREVALENCE BY NSW
ELECTORATE 2013-2050
State Electoral Division
(SED)
2014
State Electoral Division
(SED)
2050
Growth 20142050
1
Tweed
1,828
1
Tweed
5,701
312%
2
Port Macquarie
1,718
2
Port Macquarie
5,481
319%
3
Myall Lakes
1,651
3
Myall Lakes
5,390
326%
4
Bega
1,501
4
Bega
4,996
333%
5
Wyong
1,447
5
Wyong
4,730
327%
6
Port Stephens
1,300
6
Port Stephens
4,692
367%
7
Oxley
1,471
7
Oxley
4,655
316%
8
South Coast
1,561
8
South Coast
4,653
298%
9
10
Coffs Harbour
Clarence
1,325
1,447
9
Coffs Harbour
4,354
329%
4,282
226%
10 Clarence
WHAT DO AUSTRALIANS KNOW
ABOUT DEMENTIA? (IPSOS REPORT)
• 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
NUMBER ONE
HEALTH CARE COST
• Dementia is the number one heath care
cost of the ‘big five’ chronic conditions of the
new century.
• Spending on dementia will outstrip spending
on the four other major diseases:
– respiratory diseases
– digestive diseases
– cardiovascular diseases
– diabetes
ECONOMIC COST
• 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
DEMENTIA JOURNEY
1. Person and others notice symptoms –
confusion, sadness, distress
2. Diagnosis of dementia – often the greatest time
of grief for the person, their carer and family
3. Clinical and social intervention to assist
4. Support to live at home as long as possible
5. Behaviours and psychological symptoms of
dementia may worsen
6. Residential care – 1-5 years
7. Palliation and death
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
WHAT ANNOYS YOU ABOUT
DEMENTIA?
CURRENT RESEARCH FUNDING
NHMRC Research Funding 2012-13
Dementia, $26m
Diabetes, $70m
Cancer, $183m
Cardiovascular,
$107m
Unless researchers can find effective treatments for dementia, spending on dementia will
outstrip any other health condition by 2060
What types of research are
there?
When it comes to dementia there are four
issues:
1. Cause – Medical research
2. Consequence – Medical or social research
3. Course – Medical, social, evaluation or
action
4. Control – Social, action or evaluation
Why do we need to conduct
research?
1.
2.
3.
4.
5.
6.
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 nonfamilial 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.
Why do we need to conduct
research?
7.
The best models to meet care needs have not been
identified to maximise quality of life and cost
effectiveness.
8. 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.
9. 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.
10. We know very little about how to translate the best
evidence into practice.
What work is being done in
medical research?
This is the main area that people focus on to
find:
1. The cause and a cure
2. Progression of dementia – ways to change
this and detect it earlier
3. Treatment/s – psycho-social altering
4. Risk factors
5. Epidemiology
What social research has AlzNSW
done?
The Policy and Research Unit has
written the following reports:
1.
Building dementia and agefriendly neighbourhoods
2.
Addressing the stigma
associated with dementia
3.
Driving and dementia
7. Living alone with dementia
4.
Dementia and planning ahead
8. Dementia in Regional NSW
5.
Moving into residential care
9. Dementia in Prison
6.
Head injuries and risks of
dementia in football players
10. Interaction of hospital and
community care services
What social research is in the
pipeline?
1. Financial abuse of people with dementia
2. Meeting the Transport Needs of People with
Dementia - including a new booklet in
collaboration with the NRMA about the issue of
driving cessation
3. Dementia in retirement villages
4. Benefits of physical activity
5. Preventing malnutrition in people with
dementia living at home
Why does Alzheimer’s NSW
do social research?
1. Consumer oriented organisation
2. Peak organisation
3. Consumers are the ‘moral
owners’ of Alzheimer’s NSW
4. Consumers want to be involved
5. Adds legitimacy to our research
and policy work
ALZHEIMER’S AUSTRALIA 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
WHAT DO WE DO?
• AlzNSW provides services for people with
dementia, their carers and families
• We conduct research to influence
policy and service delivery
• We conduct fundraising activities
EZEKIEL AND HIS GRANDMUM
WHAT SHOULD PEOPLE KNOW
ABOUT DEMENTIA?
THANK YOU