For patients and clients
Dementia information, advice and support for your patients and clients.
- The National Dementia Helpline
Free and confidential, the National Dementia Helpline, 1800 100 500, provides expert information, advice and support, 24 hours a day, seven days a week, 365 days a year.
https://pshtest.dementia.org.au/get-support/national-dementia-helpline - Brain health
How to take care of your brain, what to do if you’ve noticed changes and milder conditions that can affect your thinking, mood and memory.
https://pshtest.dementia.org.au/brain-health - Reducing your risk of dementia
The better you treat your brain, the stronger it will stay as you age, and the lower your chance of developing dementia. Here's how.
https://pshtest.dementia.org.au/brain-health/reducing-your-risk-dementia - Early warning signs
Learn the most common early signs of dementia, how to notice them, and what you can do if they happen to you.
https://pshtest.dementia.org.au/brain-health/early-warning-signs - What is dementia and how to get support
Dementia is a brain condition. It’s not a normal part of ageing. Learn more about what dementia is, its symptoms, diagnosis, treatment and support.
https://pshtest.dementia.org.au/what-dementia-and-support - Testing and diagnosis
How to make the decision to talk to your doctor about changes in your memory, thinking, behaviour and mood, and what tests they might do.
https://pshtest.dementia.org.au/what-dementia-and-how-get-support/testing-and-diagnosis - Treatment and management of dementia
There’s no cure for dementia yet. But there are treatments to help you ensure you can live the best life you can. Learn about the most common dementia treatments.
https://pshtest.dementia.org.au/what-dementia-and-how-get-support/treatment-and-management-dementia - Living with dementia
A diagnosis of dementia changes things. But life goes on. Learn about the changes you can expect, how to plan ahead and what you can do to stay safe, connected, healthy and active with dementia.
https://pshtest.dementia.org.au/living-dementia - What next? After your diagnosis
When you get a diagnosis of dementia, it can be hard to know what to do. Here's some advice on where to start.
https://pshtest.dementia.org.au/living-dementia/what-next-after-your-diagnosis - Planning ahead
As your dementia progresses, you may no longer be able to make decisions on your own. These are some key considerations and documents to help you plan for the future.
https://pshtest.dementia.org.au/living-dementia/what-next-after-your-diagnosis/planning-ahead - Home life
Dementia can affect almost every aspect of everyday life. But there are things you can do to make home life safer and easier, so you can keep living the best life you can.
https://pshtest.dementia.org.au/living-dementia/home-life - Care options
There are many different ways to care for someone with dementia. Learn about your options, and how to explore them.
https://pshtest.dementia.org.au/living-dementia/care-options - Younger onset dementia
Younger onset dementia is any form of dementia in people under the age of 65. Learn about its causes, symptoms, stages and treatment.
https://pshtest.dementia.org.au/what-dementia-and-how-get-support/younger-onset-dementia - Counselling
Dementia Australia offers free, confidential, professional counselling for individuals, families, couples and professional carers at all stages of a dementia journey.
https://pshtest.dementia.org.au/get-support/counselling - Get support
The National Dementia Helpline, counselling and all other support services offered by Dementia Australia.
https://pshtest.dementia.org.au/get-support - Dementia Advocates Program
The Dementia Advocates Program is for people living with dementia or mild cognitive impairment, carers and former carers who want to raise awareness, fight stigma and influence decision-makers.
https://pshtest.dementia.org.au/get-involved/dementia-advocates-program - Get involved
Donate, volunteer, raise vital funds or partner with us: your support will help people impacted by dementia, their families and carers.
https://pshtest.dementia.org.au/get-involved - Dementia and LGBTI+ people
Dementia affects you the same if you aren’t cis or straight. So the entire Dementia Australia website is for you. But here are some resources specially designed for you.
https://pshtest.dementia.org.au/dementia-and-lgbti-people - Dementia and Aboriginal and Torres Strait Islander people
Information, advice and support on dementia for Aboriginal and Torres Strait Islander people.
https://pshtest.dementia.org.au/dementia-and-aboriginal-and-torres-strait-islander-people - Dementia Australia in your language
Dementia Australia's information, translated into more than 40 languages.
https://pshtest.dementia.org.au/languages
Transcript
[Beginning of recorded material]
[Title Card: Dementia Australia]
[Title Card: Assisting culturally and linguistically diverse communities to access information and support]
Kath: Hello, my name is Kath Feltl, and I'm the dementia care navigator for Western Sydney. Welcome to today's specialised video on living with Alzheimer's disease and other forms of dementia. In the spirit of reconciliation, I would like to begin today by acknowledging the traditional custodians of the land on which we gather, and pay my respects to their Elders past, present, and emerging. I also extend that respect to all Aboriginal and Torres Strait Islander people watching today. The Dementia Care Navigator role at Dementia Australia has been funded by the Western Sydney Primary Health Network for the past two years. For those of you not living in the greater Western Sydney region, it is one of the most culturally and linguistically diverse regions in Australia. Almost 38% of greater Western Sydney's population were born overseas with India, China, and Vietnam, the top three countries of birth. 42% of the greater Western Sydney population speak a language other than English at home with Arabic, Vietnamese and Mandarin being the most common languages.
This specialised video is for people across Australia from culturally diverse backgrounds who may have dementia, or are caring for someone living with dementia. Nationwide, at least 28% of people living with dementia were born in a non-English speaking country. Language differences, cultural beliefs, literacy levels, stigma, and multiple health conditions can all be barriers to accessing formal support. If you come from a non-English speaking country and are living in Australia with dementia, you are less likely to have a formal diagnosis of dementia, more likely to have diabetes, more likely to rely solely on informal care, more likely to have higher levels of disability whilst living in the community, and less likely to utilise residential aged care facilities. And as the incidence of dementia increases with age, there is a greater likelihood for multiple health conditions and multiple disabilities within a family. So, support needs tend to be more complex. We hope this video will be a first step in breaking down some barriers to understanding dementia, seeking support, and living better in the community for anyone living with dementia.
So, welcome to today's video on living with Alzheimer's Disease and other forms of dementia. In this video, we will take a brief look at the brain and brain health, Alzheimer's disease, dementia, and getting a diagnosis. Dementia Australia services, including the National Dementia Helpline and Counselling, accessing the community supports you need to live better with and other helpful resources. Throughout our lives, it is important we take good care of our brains. Many people know the things we can do to look after our hearts, but did you know those things are also good for the health of your brain? You can look after your brain health by eating a healthy diet and maintaining a healthy body weight by quitting smoking, by reducing your alcohol intake, increasing your exercise and activity levels, keeping socially active with friends, family, and the local community.
Seeing your GP regularly to monitor your blood pressure, sugar levels, and cholesterol, taking care of your mental health and seeking help if you're feeling anxious or depressed, and keeping up with other health checks, especially your hearing and vision. By looking after your heart and your brain as you age, you can significantly reduce your risk of developing dementia or slow its progress if you already have a diagnosis.
The brain is an amazing complex organ with many parts that work together. Our brains maintain basic life processes like breathing, body temperature, and blood pressure. Our brains are also responsible for helping us to communicate, learn new things, experience the world, and feel emotions such as love. Our brains are also part of who we are. The brain stores our memories, likes and dislikes, hopes and dreams. As we get older, we will likely experience a slowing down of brain processes. It may take us longer to remember a person's name or learn something new. We may be aware that we are forgetting more frequently, misplacing items more often, or even forgetting why we have walked into a particular room in the house. These changes are a normal part of ageing.
Alzheimer's disease is not a normal part of ageing. It is a medical condition, a disease of the brain. Alzheimer's disease is more than just forgetting. It is a progressive illness that will get worse over time and will eventually lead to death. Alzheimer's disease is the most common form of dementia and probably the most well-known. There are over 150 types of dementia with Alzheimer's disease accounting for about 70% of all dementias. The term dementia is used to describe many progressive diseases of the brain, including Alzheimer's disease.
People can develop dementia at any age. If you were diagnosed with dementia before the age of 65, we call it younger onset dementia, but even children can be diagnosed with dementia. Surprisingly, the majority of dementias are not inherited. As Alzheimer's disease progresses, a person may have difficulty with thinking, remembering, planning, making decisions, and doing everyday tasks. A person's ability to communicate their personality and their mood, how they feel can also be affected. Each person will experience dementia differently and although there is no cure, a person's quality of life can be improved when we focus on what the person living with dementia can do.
In this picture, we see the same sections of two different brains. The one on the left shows a brain without any disease. The one on the right shows a brain affected by advanced Alzheimer's disease. The diseased brain has shrunk, and the areas that are involved in memory and language are affected. Any part of the brain can be affected by dementia, that's why dementia can impact every part of our daily lives. A person living with Alzheimer's disease may forget people's names or recent events. They might have trouble communicating their needs or that they're in pain. A person living with dementia might have difficulty with their balance or performing everyday tasks they once knew very well, such as driving, or making a cup of tea. As disease spreads through the brain, more brain functions are damaged. In end stage dementia, the basic life functions like breathing and temperature control are also affected.
So, why is it important to talk about Alzheimer's disease and other forms of dementia? Because dementia is probably more common than you think. In Australia, over 400,000 people live with dementia. Dementia is the second leading cause of death in Australia, but the number one cause of death for women. Although dementia can affect people at any age, the risk of dementia increases with age. One in 10 adults over the age of 65 will develop dementia, and that increases to three in 10 for people over the age of 85. We're going to encounter people living with dementia in our everyday lives, that person may be a relative, a neighbour, a member of our church or social group. It may be the person ahead of us in the supermarket checkout queue, or next to us on the bus, or it could be you or me. As we get older, we need to understand Alzheimer's disease and dementia better so that we can seek help early and support those living with dementia.
Symptoms of Alzheimer's disease and other forms of dementia can vary from person to person, but can include memory loss such as forgetting something, cooking on the stove until it burns and having no memory of how that happened. Difficulty with everyday tasks, for example, getting dressed, forgetting people in places that were once very familiar, difficulty with planning and organising things such as preparing a meal or paying the bills, getting confused and not understanding what someone is telling you. Personality changes that are out of the ordinary, such as becoming suspicious or easily angered, losing interest and motivation to do things that were once enjoyable and motivating. Behavioural changes such as eating more, constantly changing clothing, or repetitive behaviours, language problems including forgetting words, jumbling sentences, finding it more difficult to speak in a second language. These changes in skills, abilities, and behaviour cannot be controlled by the person living with dementia. If you are a family member, are experiencing these changes on a regular basis and they are interfering with your everyday life, it is time to see your GP.
If you have any concerns, visit your doctor early so they can rule out other medical conditions that may be causing your symptoms. Vitamin and hormone deficiencies, depression, medication side effects, infections, dehydration, even brain tumours can all cause symptoms that are also associated with dementia. When you see your doctor, take with you a list of your concerns and your current medications, there is no single test for Alzheimer's disease. Dementia is diagnosed by a doctor through a process which may include tests of memory and thinking, taking a family and medical history, doing blood and urine tests, getting brain scans, and further referrals to specialists in dementia are accurate diagnosis and treatment advice.
Your doctor may prescribe medication which can help with the symptoms of dementia, or the problems that may occur with dementia such as depression, anxiety, or sleep issues. Early diagnosis can help rule out other treatable medical conditions, provide early access to information, resources, and treatment which may slow progression. If you are worried about your memory and your ability to do everyday tasks, it's important to get good medical advice. Ignoring the symptoms of dementia won't make it go away, getting a diagnosis is the first step to living better with dementia.
Dementia Australia provides free services to individuals and families living with Alzheimer's disease and all forms of dementia. Shortly, we are going to hear from Aline Castro Dementia Australia counsellor, but first, just a quick overview of some of the services and supports available through Dementia Australia. The website contains information kits, help sheets and videos in English, and many community languages. Check out the events page for online and in-person education sessions on topics from understanding dementia, to driving and dementia, and creating a dementia-friendly home. There are short group and individual programs for living with dementia support after a diagnosis and mild cognitive impairment. The Connecting with Peers program is specifically for people living with dementia, and Memory Lane Cafes provide social and emotional support for the person living with dementia and their family member. Head to the website or call the National Dementia Helpline to find the supports and information you need.
The National Dementia Helpline is available 24 hours a day, seven days a week, every day of the year. It is a free service that provides information and advice to people living with dementia or mild cognitive impairment. People concerned about changes to their memory and thinking, family, friends and carers of people living with dementia, as well as people working in the health and aged care sectors. The helpline can provide emotional support and guidance, connect you to Dementia Australia services and programs, as well as government and community supports. Call the translating and interpreting service on 131 450 if you would like to speak to a helpline advisor in a community language and have the Dementia helpline number with you. And now, to Aline Castro, Dementia Australia counsellor.
Aline: Hello, my name is Aline Castro, and I work at Dementia Australia as a counsellor. At Dementia Australia, counselling is available for the person living with Alzheimer's disease or any form of dementia. Counselling is also for family members and friends of people living with dementia. You don't need a doctor referral for counselling through Dementia Australia, and the service is free. Counselling is important as it can help you understand what you or someone you care about is going through. Everyone will experience dementia differently.
Counselling support can help you, individuals, couples, families, and carers to gain a better understand of the impact of dementia, develop ways to cope with feelings of stress or strong emotions, and plan for the future. People come to counselling for many different reasons, to learn about the dementia, and managing the change that come with dementia, to understand and cope with grief following dementia diagnosis, to help carers support the person live with dementia at home for as long as possible, to deal with the possibility of moving into a residential care home, to learn better ways to communicate, and to develop support, positive health and wellbeing.
To access counselling, we can call the National Dementia Helpline on 1800 100 500, and ask you to be resisted for counselling, or you can go onto the Dementia Australia website, and under the support tab, go to counselling and fill in the request form. If English is not your first language, Dementia Australia can organise an interpreter for your counselling sessions. Just let us know which language you need and if you prefer a male or a male interpreter.
After receiving your interest for counselling with the helpline, your request will go to our intake team, who will contact you for some additional information and organise your first appointment. This process can take some time and there may be a waiting list in your area. You can also speak to your GP about accessing another counselling service through Medicare, and Carer Gateway also provides counselling to carers for free. Dementia Australia offers six free counselling sessions. The counselling sessions can be done over the phone via video conference, and in some locations, in person at the Dementia Australia office. If you think a counselling might help you, please call the Dementia Australia helpline on 1800 100 500 and let's talk about dementia. Now, back to Kath.
Kath: Thanks. Just as important as getting a diagnosis and information is reaching out for practical support, which will help you maintain your independence for as long as possible, and assist family members who have taken on a caring role. On average, a person will live with a diagnosis of Alzheimer's disease for eight to 10 years, and most likely, the majority of that time will be living at home. The Australian government has a number of supports to help you live as independently as possible. My Aged Care is for people over the age of 65 who need support, and would like to access services that are subsidised by the government. If you need help with shower and getting dressed, getting to medical appointments or the shops, if you need help with taking medication, buying food, preparing meals, or cleaning your home. If you need equipment like a walking frame, or a commode, or need some minor changes to your home to make it safer. If you would like support to access social activities in the community, or become part of a social group, or need access to Allied Health Services like nursing, physiotherapy, or a dietician, then you should call My Aged Care.
You can live with family and still register for support. Also, check out the website for more information, including information in 22 Community Languages, videos, and your state organisations for partners in culturally appropriate care. When you register with My Aged Care, they will collect some personal information from you, including your Medicare number, and check what type of support you are looking for.
A family member or friend can make this call for you as long as they have permission when you register. It is also a good idea to register a family member or friend as your representative so they can make inquiries on your behalf. Expect long wait times when you call My Aged Care, or try calling early or late in the day, or even on a Saturday. You can also register with My Aged Care via the My Aged Care website. After the initial call, my Aged Care will arrange for an assessor to discuss your support needs with you. A face-to-face meeting in your own home is a good way to complete this assessment. It is also a good idea to have family or a support person with you during this assessment.
How much support you require is discussed during the first assessment. If you just need a couple of specific services, you might be assessed for the Commonwealth Home Support Program, and be given referral codes for those specific services. You can use those codes like a voucher system to buy the help you need from a service provider.
Although the supports are subsidised by the government, you'll most likely have to pay a contribution fee set by the provider. There are staff shortages across the Aged Care workforce, so it can take time to find the services you need – be prepared to call around to see who can assist in your area. If your assessor sends those codes off to a provider for you, you still need to follow up to make sure that you can get the services you are requesting. You can also call My Aged Care to have your codes reissued, or obtain a list of providers in your area for your follow-up.
You might be assessed for short-term restorative care, which is an eight-week program designed to help manage a decline or change in your level of functioning. A service provider will help put together a program that suits your needs, and it could include aids and equipment, allied health services such as physiotherapy, occupational therapy, nursing, and speech therapy. It can also include personal care and cooking assistance, just to name a few. The services you need will be guided by a doctor's assessment. You may be asked to contribute to the cost of your care if you can afford it.
For people assessed as needing a higher level of ongoing care, whether in the home or a residential aged care facility. My Aged Care will organise an assessment with ACAT, The Aged Care Assessment Team. Home Care Packages and Residential Aged Care are means tested, and if you're a self-funded retiree, you will need to fill in an income and assets form to know what you'll be charged. If you are assessed as needing a Home Care Package, you are not given individual codes for individual services. Instead, you are allocated a budget or amount of money that can be used to purchase the services you need throughout the year. Once you are assessed as needing a Home Care Package, you'll then need to wait for a package to become available. You'll be placed on a waiting list until a package becomes available. It will then be up to you to find a service provider to manage your package and your supports.
When searching for a provider, you might want to check what are their hourly support rates? Do they have workers that speak your language? Do staff have training in dementia care and how flexible are they with support times? There is also the possibility of self-managed Home Care Packages, which can free up additional funds for direct support, but this does involve more work on your part. You can ask for additional individual referral codes in the interim if you don't already have them, especially if you're assessed as medium or low priority for a package, but access to a Residential Aged Care Home, it's a good idea to have the assessment completed even if you aren't planning on leaving your home.
If your carer has an unexpected emergency of their own and can't provide your regular care, respite in a residential aged care home may be a good option. Respite is also a chance for carers to take a break from the caring role. There are costs associated with residential respite and for those looking at permanent placement, these are means tested. You can access the Fee Estimator on the My Aged Care website to get an idea of what you might be expected to pay, and remember, getting these assessments for residential care doesn't mean you have to use them. Getting the additional support, you need will take time, requires patience and determination. It can also be confusing and frustrating the whole process from calling My Aged Care to register for support, completing the In-Home Assessment, and then finding the services you need can take many months, even more than a year, so I encourage you or your family member to reach out for support before it becomes urgent.
Getting supports in early can have a number of benefits, including reducing stress within the family network, and giving the person living with dementia time to adjust to having support provided by people outside the family. Routines are important when memory is impaired, so putting supports in early helps those new supports become part of a daily routine. Having the additional support in place can help reduce isolation, and increase activities and social interactions for the person living with dementia. Being socially engaged is important, whether or not we are living with dementia.
If you're over 65 and supporting a loved one living with dementia, don't forget, you might also be eligible to access support for yourself through My Aged Care. Over time, as your circumstances change, call My Aged Care and ask for a reassessment. If you are needing a higher level of support, if you're receiving a Home Care package and are living with dementia, you may be eligible to apply for the Dementia and Cognition supplement. Just ask your service provider if you can apply.
For those living with dementia who don't have family who can assist with the process of applying for and finding age care support services, care finders might be able to help guide you through the process. You can find your local care finder services on the My Aged Care website. Services Australia can help you with a number of different supports. Some service centres have aged care specialist support officers that you or a family member can speak with face-to-face.
The aged care specialist officer can help with different types of aged care services, financial information regarding accessing those services, and can connect you to My Aged Care and local support services. Call 1800 227 475 to check where is your closest aged care specialist officer and to book an appointment. A financial information service officer can provide information on Centrelink payments such as the carer allowance and carer payment, which you might be eligible for if you provide care for a family member living with Alzheimer's disease or another type of dementia. A financial information service officer can also help understand what happens financially when you move into aged care services. Services Australia also has a multilingual phone service on 131 202, as well as translated material on their website.
If you or a family member has dementia, and are under the age of 65, and needs support to live independently, you should contact the National Disability Insurance Scheme, the NDIS, and become a participant. The government scheme provides individualised funding for support based on individual circumstances. Call 1800 800 110 to apply, or go to the website. You must be an Australian citizen, permanent resident, or a protected special category visa holder, and have a permanent disability which impacts on your daily life. Dementia Australia has a dedicated website or hub for people living with younger onset dementia and information on accessing the NDIS. You'll find information on applying for the scheme and planning for your first NDIS meeting to discuss your needs and goals.
If your mum, dad, son, daughter, brother, sister, uncle, aunt, or grandparent has a diagnosis of dementia and you help them with day-to-day activities, you are a carer, and Carer Gateway is a free service that is there for you to support you in your caring role. You can call Carer Gateway on 1800 422 737, Monday to Friday, 8:00 AM to 5:00 PM to register for support. If you get sick or injured and can't look after your loved one, you can call Carer Gateway 24/7 for emergency respite. Carer Gateway can link you to carer support groups and free counselling. Carer Gateway can offer planned respite care so you can take a break from your caring role, call Carer Gateway, Monday to Friday to register for support. Carer Gateway Staff will organise a time to call you back to discuss your needs, and what supports you would find helpful. You can also go onto the Carer Gateway website for lots of information – online learning and resources in community languages. Register as a carer now. Don't wait until there is a crisis, Carer Gateway is there to support you in your caring role.
If you are more comfortable having a conversation in a language other than English, you can use the translating and interpreting service, TIS, to call most government agencies and service providers, including the services we've just discussed. TIS is available 24 hours a day, seven days a week, and is accessible from anywhere in Australia for the cost of a local call on 131 450. TIS can translate in more than 100 languages. When you call TIS, an operator will ask you what language you need, tell the operator, in English, the language you speak. The operator will then connect you with an interpreter who speaks your language. You may need to wait on the line for the interpreter, or the operator may need to call you back when an interpreter is available. Once you are speaking with the interpreter, tell them the service you would like to contact and give them the number to call.
Sometimes, when you call TIS, you'll reach a recorded message. Eventually, you'll be asked what language, it will be repeated back to you, and answer “yes” if correct. You'll then be asked if you are a registered client, say “no”. You will then be connected to an operator. You need to have the phone number of the organisation you wish to contact. Some people find it easier to have someone make the initial call to TIS for them and to get the interpreter on the line. Here is a list of the key services and contact numbers I have mentioned.
I would also like to mention Dementia Support Australia. They provide a 24-hour helpline when changes in behaviour become challenging and impact people living with dementia and their families. I would also like to mention the National Ageing Research Institutes Moving Pictures Project. The Moving Pictures team have produced short films in various community languages including Greek, Spanish, Italian, Vietnamese, Hindi, Tamil, Mandarin, Cantonese, and Arabic videos on detection and diagnosis, navigating care and the dementia journey. Moving pictures also have animations on preventing dementia and comics on dementia awareness. I strongly recommend taking a look at the website for easy to understand information, and access to resources in your language.
Thank you for your time today, and I hope you have found some information that can assist you to find the support you need on your dementia journey.
[Title card: Together we can reshape the impact of dementia]
[Title card: Dementia Australia. 1800 100 500. Dementia.org.au]
[END of recorded material]
The National Dementia Helpline
Free and confidential, the National Dementia Helpline, 1800 100 500, provides expert information, advice and support, 24 hours a day, seven days a week, 365 days a year. No issue too big, no question too small.