YOUNGER ONSET DEMENTIA Territory Insurance Conference resilient future Janelle Russ Care Consultant Younger Onset Dementia Key Worker Program Alzheimer’s

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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: janelle.russ@alzheimers.org.au 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

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