YOUNGER ONSET DEMENTIA Territory Insurance Conference resilient
future Janelle Russ Care Consultant Younger Onset Dementia Key
Worker Program Alzheimers Australia Vic Slide 2 Why are people
living with dementia relevant to this conference and your work?
Slide 3 PRESENTATION OUTLINE What is Dementia & Younger Onset
Dementia? What are the impacts on individuals, families and
communities? Financial implications & how this sector can
lessen the burden Questions Slide 4 WHAT IS DEMENTIA? Slide 5 FACTS
Second leading cause of death in Australia Currently more than
342,000 people in Australia living with dementia That figure is
expected to rise to 900 000 by 2050 Not a normal part of ageing
Dementia can happen to anyone Slide 6 Frontotemporal dementia Lewy
body disease Alzheimers disease Vascular dementia Mixed dementia
COMMON TYPES OF DEMENTIA There are over 100 types of dementia Slide
7 7 HOW THE BRAIN WORKS Parietal Lobes 1)Sensory processing
2)Attention 3)Reading and writing 4)Spatial orientation Frontal
Lobes 1)Planning, organising, decision making 2)Starting and
stopping actions 3)Regulation of social behaviour 4)Working memory
5)Speech generation 6)Insight Temporal Lobes 1)Auditory processing
2)Language comprehension Occipital Lobes 1) Visual processing
Limbic Region 1)Forming and processing emotions 2)Forming and
organising memories Hippocampus (1) Memories are stored all over
the brain, but the process is coordinated in the hippocampus Slide
8 8 SIGNS & SYMPTOMS OF DEMENTIA poor memory disorientation
mood and personality changes less ability to initiate actions
Difficulties with: judgement and reasoning planning and
decision-making language learning something new spatial orientation
Slide 9 YOUNGER ONSET DEMENTIA Any dementia diagnosed before the
age of 65, a range of these people are in their 30s & 40s It is
estimated that approximately 25 100 people in Australia have
Younger Onset Dementia 1 in 13 or 5% of dementia cases Slide 10
ISSUES DIVERSITY Wide geographic spread Variety of dementia
diagnoses Differing stages and progression of disease Age ranges
from 20s to 65 years of age Slide 11 ISSUES - DIAGNOSIS Extended
time to obtain diagnosis Commonly misdiagnosed Frustration and
anger at service sector Delayed treatment and future planning Slide
12 ISSUES RESPITE & RESIDENTIAL CARE Aged Care vs. Disability
Services Few age appropriate services available people are often
considered too young for services Families unwilling to relinquish
care Staff lack understanding and training Slide 13 ISSUES -
RELATIONSHIPS Younger Onset Dementia affects the whole family and
social network Relationship breakdowns before diagnosis can be
common Major shifts in roles in relationships Feelings of
resentment, anger, guilt, frustration, love, hate, loss, grief,
inadequacy and shame are all normal Slide 14 IMPACT ON FAMILIES
Stigma and a lack of understanding from the community Children may
be worried about their own risk of developing dementia Young people
may not know where to access help and support Slide 15 IMPACT ON
WORK Dementia can impact on work performance, relationships and
personality Often mistaken for other conditions, such as stress
depression or menopause He was known as the friendly guy and he was
always whistling, then he had a run in with his manager and punched
a hole in the wall, but it was so out of character, so they called
us because they knew something was wrong. Slide 16 EMPLOYMENT
IMPACT Prior to a diagnosis a person may gradually lose confidence,
skills & sense of worth at work May have difficulty completing
work tasks and role requirements May or may not negotiate with HR
or union about entitlements & rights As a result they may leave
work prematurely Slide 17 DISCLOSURE OF DIAGNOSIS Disclosure will
be an individual choice Some professions will legally require
disclosure of illness, eg. health professionals, drivers,
tradespeople Some dementia diagnoses affect insight and some
individuals may not think there is anything wrong Recommended that
people seek advice and support when ready to disclose Slide 18
ADAPTING EMPLOYMENT Employers have a legal obligation to make
reasonable adjustments to allow a person with a disability to do
their work Work tasks will need to be continuously monitored over
time Requires understanding and support from employer Slide 19
ISSUES - FINANCIAL May be employed or running their own business at
time of diagnosis Huge financial impacts at mid life; rent,
mortgage, family costs, schooling Progression of disease may mean
carer needs to reduce or cease work Superannuation may be impacted
Slide 20 FINANCIAL DIFFICULTIES AFTER DIAGNOSIS? Gap between
ceasing employment and accessing insurance with no income Process
of accessing insurance and other financial services can be
frustrating and upsetting during a stressful period No income
protection or TPD clause Slide 21 COSTS OF CARE High costs
associated with aged care placement Bond Daily Fees Other family
members affected financially, eg: having to sell the family home or
carers finances adversely affected On speaking to someone about our
financial situation and how to afford the care required, the best
suggestion they could give, was to look at getting a divorce! That
wasnt very helpful and very insulting. Slide 22 EXPERIENCE
ACCESSING SUPERANNUATION & INSURANCE SECTOR Embarrassment in
lack of knowledge Confusing system, so much paperwork Difference
between sympathy & being helpful Slide 23 CONSUMER SUGGESTIONS
Financial sector or Organisation Helpline List of information and
paperwork required to access various payments and advice Financial
education needed Importance of planning ahead for worse case
scenario Slide 24 National Dementia Helpline 1800 100 500 or visit
www.fightdementia.org.au FURTHER INFORMATION Slide 25 CONTACT
DETAILS Janelle Russ Younger Onset Dementia Care Consultant Phone:
03 9815 7800 Mobile: 0408 705 176 Email:
[email protected] Slide 26 FINAL MESSAGE Wife (carer)
when asked what message she would give to the sector said: Be
gentle to us. We are in shock and adjusting to a huge change in our
lives. We dont want sympathy, just assistance, working with helpful
people and trying to reduce the number of times we have to repeat
our story which can reinforce the sadness we feel. Slide 27 THANK
YOU Slide 28 QUESTIONS
