YOUNGER ONSET DEMENTIA Territory Insurance Conference resilient future YOUNGER ONSET DEMENTIA Janelle Russ Care Consultant Younger Onset Dementia Key Worker Program Alzheimer’s Australia Vic Thank you for inviting me You’re a very different audience to what I would normally present to, mainly to people in the health, community and aged care sector. I feel very privileged to be working with people living with Younger Onset Dementia, it has been the most confronting position I have ever held but is also the most inspiring and its terrific to be here and represent these people and share their stories. I work as part of the National Younger Onset Dementia Key Worker Program. 40 people employed across Australia to work with people living with this disease and their families and friends and the community they live in. I am based in Melbourne and have a statewide role as Care Consultant. My job covers working with people from diagnosis through to when their families are needing respite and looking for care outside their home.

Resilient Future: Is such a relevant topic for the people with this disease. One of the wives who is a carer said to me recently that she used to believe that money didn’t bring happiness, but she said she has changed her mind after her husbands diagnosis, as if you don’t have money or any supportive plans in place it makes for a very difficult situation and future. So this industry has a vital part to play in assisting people such as those diagnosed with this disease One of my most enjoyable aspects of the role is to work with people at early diagnosis to try and prevent further decline through depression and social isolation, so I work with them and their families to get them doing the things they enjoy. Two of our clients enjoying a supported gym program. Why are people living with dementia relevant to this conference and your work?

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

It’s a joke for some. A seniors moment, a wise crack when someone forgets something. WHAT IS DEMENTIA?

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 Terminal Disease Starting well before symptoms Progressive degeneration of cognitive capacity

COMMON TYPES OF DEMENTIA Alzheimer’s disease Vascular dementia Mixed dementia Frontotemporal dementia Lewy body disease Umbrella term used to describe a collection of symptoms caused by diseases such as Alzheimer’s Disease that affect the functioning of the brain. Alzheimer’s Disease is the most common particularly in older people In younger people Alzheimer’s still represents about a third of cases, however we see far more variety of diseases causing dementia in this group. There are over 100 types of dementia Feb 2014 Version

HOW THE BRAIN WORKS Frontal Lobes Parietal Lobes Limbic Region Planning, organising, decision making Starting and stopping actions Regulation of social behaviour Working memory Speech generation Insight Parietal Lobes Sensory processing Attention Reading and writing Spatial orientation Limbic Region Forming and processing emotions Forming and organising memories Occipital Lobes 1) Visual processing This is a picture of a brain – over time scientists have come to understand that different parts of the brain perform different functions, no one part can function on its own, each part relies heavily on all the parts working together Use the example of parts of the brain used while DRIVING Example 1: Driving is a complex skill requiring a person to use several areas of the brain to complete this task. FRONTAL Lobe: is activated whenever potential danger lurks or when deciding which is the best route to take: Lots of judgement & decision making involved PARIETAL Lobe: works hard because it is responsible for integrating all the information from the senses: Responsible for visual-spatial perception…ie ensuring that you manage to keep the car in the lane you are meant to Limbic region: helps in the forming and organising of memories and emotions So when driving a car it helps you to know when the actions of other drivers are a threat, or just annoying Temporal and Occipital Lobe: These interpret all the visual information ;for example these interpret sounds heard by the driver Temporal Lobes Auditory processing Language comprehension Hippocampus (1) Memories are stored all over the brain, but the process is coordinated in the hippocampus

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 Memory: memory loss is experienced by the many people with dementia, starts with the loss of recent memories because the person has difficulty in retaining new information Example: repeating the same story or question, may remember an event decades ago but not what they did yesterday. Disorientation: May become confused about the time and where they are, particularly if the environment or people are unfamiliar Mood changes: fear, nervousness, sadness, anger, paranoia, depression, crying, apathetic - may not be able to deal with unfamiliar environment or noise Example: person may become upset due to noise, crowds, attempts to deal with distractions. Less ability to initiate actions: doing things that obviously need to be done Example: picking up clothes and putting them in the dirty clothes basket, will watch a family member doing all the work, and not see what needs to be done or offer to do anything Judgement and reasoning: may not understand cause and effect. Example: may not realise the need to turn on the kettle in order to boil water. Planning and decision making- cannot develop or follow a plan Example; cannot decide what to eat when given options or plan a trip to the supermarket Language skills- may effect both verbal and written communication Example: difficulty writing down messages or appointments, reading books, train timetables, may lose ability to name objects or put words in the correct order, people from CALD backgrounds may revert to first language. Spatial orientation: a change in the ability to judge the distance between self and other objects Example: find it hard to walk up and down stairs, or walk across patterned floors The changes we are talking about here are a significant difference to the way the person previously functioned and acted Feb 2014 Version

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

ISSUES – DIVERSITY Wide geographic spread Variety of dementia diagnoses Differing stages and progression of disease Age ranges from 20’s to 65 years of age Rare, different from one individual to another, very socially isolating, many people living with the condition find friends and family may not relate to them, friends may drift away.

ISSUES - DIAGNOSIS Extended time to obtain diagnosis Commonly misdiagnosed Frustration and anger at service sector Delayed treatment and future planning 3-5 years on average before diagnosis, medical profession will aim to discount all other options before assessing for dementia, tests are time consuming and expensive. Often by the time someone is diagnosed they may be further down the track with the condition.

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 Example of different families approaches to care, eg: people living alone may go into care earlier, some families organise care at home.

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 Impacts on parenting abilities, change in role from partner to also carer, shifts in responsibilities, expectations, life goals and plans. Many families try and bring life goals forward after diagnosis if financially possible, overseas trips, children's weddings.

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 Children as carers, impacts on mental health, social isolation, loss of friends, stigma associated with the disease. Mother living with Alzheimer’s Disease, diagnosed just after her 50th birthday. Children needed to act as carers and assist in running the house while their Dad continued to work full time. They talk about the different support they get from friends compared to families going through the loss of a family member through another terminal illness. When we ran an evening for young people to come and meet one another over pizza, they said that they just wanted to meet other young people whose parents have the disease as they didn’t believe they existed.

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.” Personality changes, carer reported, ‘ 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.’

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 People maybe anxious and lack the confidence to seek help or talk to someone in the finance or HR fields to know what might be best for them. Often people will leave the workforce before they have exhausted all means of support eg: sick leave etc. Too embarrassed.

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 Examples: Dentist, immediately after diagnosis, reported to the registration board and stopped work, so major change in lifestyle from running own practice for 30 years, with high contact with the staff and public to being at home full time, risk of depression, social isolation.

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 Most YOD clients by the time we are working with them have stopped work. Not a lot of cases where adjustments have been made after diagnosis. Maintenance Electrician for 20 years at a large school, demoted to handyman team then retrenched.

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 Whole family is affected: Example: Wife (aged 46) was a nurse and had used all her sick leave, carers leave, annual and long service leave so was taking night shifts so that she could care for her husband and two young teenage boys during the day.

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 One family was telling me about their experience with accessing Income Protection Insurance, where they were required to apply for the payment every month, including doctor visits each time for over a year, despite her husband continuing decline. This process was completely frustrating and upsetting during that early stressful period, where families have many additional medical appointments and difficulty coming to terms with the diagnosis. Eg: monthly applications for insurance payout Husband of a person living with dementia needed to find out details about an electricity account, as his wife kept changing providers every time a sales person came to the door. As his wife was the account holder the business said they wouldn’t speak to him. He tried to explain about his wife’s condition and when he said she has Alzheimer's the person just laughed as they thought he was joking. He has never felt so frustrated and angry.

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 wasn’t very helpful and very insulting.”

EXPERIENCE ACCESSING SUPERANNUATION & INSURANCE SECTOR Embarrassment in lack of knowledge Confusing system, so much paperwork Difference between sympathy & being helpful

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 Families asked for a Helpline or organisation Go to person that would be able to assist them navigate and understand the process. They asked for a list of what information they would need to find and provide to step through the process

National Dementia Helpline FURTHER INFORMATION National Dementia Helpline 1800 100 500 or visit www.fightdementia.org.au

CONTACT DETAILS Janelle Russ Younger Onset Dementia Care Consultant Phone: 03 9815 7800 Mobile: 0408 705 176 Email: janelle.russ@alzheimers.org.au

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 don’t 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.”

THANK YOU

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