These are the questions they wish they had thought to ask and about information that's important to know but difficult to find.
We hope this page will be especially useful as a starting point for people who have recently been diagnosed with dementia or who have just started their caregiving journey.
For people diagnosed with dementia
I've just been diagnosed with dementia. What do I do now?
Being diagnosed with dementia can be upsetting; but for some people who have been worried about themselves for some time, the diagnosis can come as a relief.
Often people find it easier to manage a diagnosis if they can understand the disease and its implications. Once you have a diagnosis, you can begin looking for dementia information and resources that are specifically targeted to your needs. This knowledge can also assist in beginning to plan for the future.
When you're ready, it's important to tell your family and friends who don't already know about your diagnosis that you have dementia. This might be difficult for you, as it can be very difficult to come to terms with a dementia diagnosis. But when the people close to you are clear about it, they have time to adjust to your condition, find out about dementia and learn how best to support you. It may help if you can explain what kind of dementia you have and how it affects you.
It can be helpful to learn about the disease and how it will progress, but it's important to know every experience with dementia is unique. The symptoms and progression of dementia can vary in different people. While there is no cure for dementia, medications can help some people with some of the symptoms. Speak to your GP or geriatrician about the treatment options available for you.
We recommend you learn about tips and strategies that can help you in your day-to-day life. Healthy living will help you live well with dementia for as long as possible and may slow the progression of the disease.
It's important to focus on what you can do rather than what you can't, and to find strategies to cope with the changes. There are other people who know what you're going through. You can use Your Care Navigator to find support groups and services where you're comfortable to share your feelings and emotions.
Planning for the future now can help you take charge of your life.
There is help available. Go to the 'Find Support for me' page on Your Care Navigator and we can connect you to organisations that will help you and give you practical tips and advice.
How can I learn more about my type of dementia?
There are over 100 diseases that can cause dementia. The most common causes of dementia include Alzheimer's disease, vascular dementia and dementia with Lewy bodies.
It's important to speak to your doctor. Your doctor will complete a range of tests that may help identify the type of dementia you have.
The Dementia Australia libraries have dementia-specific books, videos and journals and eResources that help you and your friends and family understand the type of dementia you have. You can find more information below.
You can contact the National Dementia Helpline on 1800 100 500 if you would like to order copies of the dementia help sheets to be delivered to your home.
Alternatively, you can download a free information kit to better understand your diagnosis.
Are there any local support groups?
There are formal and informal support groups available to you in the Brisbane North and Moreton Bay area.
You may discover that meeting up with others, connecting and seeking assistance from those who are in or have had similar situations may reassure you.
You can find a local support group on Your Care Navigator.
Is there somebody I can talk to about my worries and fears?
A dementia diagnosis can have a significant impact on your life, which can involve experiencing a range of emotions.
You may feel upset, angry, relieved to have answers, doubtful about your diagnosis or in shock.
Talking with your friends and family about how the diagnosis is affecting you may help you work through your feelings.
There are times when it may be helpful to seek counselling from a health professional including your GP, a psychologist or counsellor.
You can find more information on Your Care Navigator, including supports available to you.
Where can I find someone from my culture to talk to, who might be able to understand me better?
Speaking to someone from your own culture can be helpful. Research tells us that different cultures think about dementia differently.
Your culture and beliefs help shape your sense of self. They also shape how you perceive, feel and respond to others and their surroundings.
People from non-English speaking backgrounds have specific challenges as a result of dementia-related brain changes, which can often cause them to return to their primary language or other communication challenges.
If you require a translation service to find more information about dementia diagnosis, call 131 450 for the Telephone Interpreting Service. For more information, click 'Culturally and Linguistically Diverse People living with dementia' below.
If you identify as Aboriginal and Torres Strait Islander, you can find information about extra support you can access by clicking 'Aboriginal and Torres Strait Islander' below.
What if I feel shaky on my feet or am afraid of falling?
Dementia can affect the areas of the brain that are responsible for movement and balance. You might also have problems with walking that are not associated with dementia.
The first stop is your GP. They might recommend an occupational therapist and/or a physiotherapist to assist you. These allied health professionals can help with exercises to strengthen muscles and supportive equipment, such as walking aids.
How do I organise my affairs and prepare a will?
Planning for the future is an important step for you and your family after a diagnosis.
Make sure your wishes about health care, finances, and legal matters are organised in the event you're unable to make decisions for yourself.
For carers and families of someone diagnosed with dementia
My family member appears to be showing symptoms of dementia. How can I encourage them to see a doctor?
If you've noticed someone appears to be showing signs of dementia, it's important they see a doctor. You can learn about the early signs of dementia on Your Care Navigator.
Some people may be resistant to the idea of visiting a doctor. In some cases, people deny or don't realise there is something wrong. This can be due to the brain changes of dementia that interfere with the ability to recognise or appreciate one's memory problems. Others, with retained insight, could be afraid of having their fears confirmed.
One of the most effective ways to overcome this problem is to find a physical reason for a visit to the doctor, like a check-up for a symptom that the person is willing to acknowledge, such as headaches or failing eyesight.
Perhaps suggest a heart examination, a blood pressure or diabetes test, or a review of long-term medication. Any expressed anxiety by the person is an excellent opportunity to suggest a visit to the doctor. Another way is to suggest that it is time for you both to have a physical check-up.
Be sure to provide a lot of reassurance. A calm, caring attitude at this time can help overcome the person's very real worries and fears.
You can also contact the National Dementia Helpline to talk to a professional about advice.
Where can I receive training to care for someone living with dementia?
There are a number of education training resources available to assist in learning about dementia and caring for someone living with dementia.
Dementia Australia offers education sessions and group programs for carers, family members and friends of people living with dementia. The education programs focus on providing knowledge, strategies and support that is aligned with the various stages of dementia.
You can find other organisations that provide online or face-to-face training on Your Care Navigator.
Where can I go for assistance with changing behaviours if I am unable to manage them?
Dementia can lead to behaviour changes. These changes can be distressing and confusing for families and carers.
You can find information about changing behaviours and the support available to you in the Brisbane North and Moreton Bay region through Your Care Navigator.
How do I care and access support for a person who has not accepted their dementia diagnosis?
Receiving a diagnosis of dementia can be a frightening experience.
It is common for someone diagnosed with dementia to deny that they are having problems with memory or other cognitive abilities.
Their dementia might prevent them from recognising the changes that you have noticed. This is known as anosognosia. It is important for you to access support to assist you in caring for the person who has dementia.
Your first step may be speaking with the doctor who is caring for them. Joining a carers support group may provide the opportunity to learn how other people in the same situation dealt with it.
You can find more resources about denial and providing care on Your Care Navigator.
Are there any carer support groups in my area?
Support groups can provide a safe space for caregivers to meet, support each other, share tips, and socialise.
You can find a support group in the Brisbane North and Moreton Bay region on Your Care Navigator.
What if I require home medical equipment? How do I make this happen?
Putting safety measures and home medical equipment in place is important for people living with dementia as it can allow them to live in the comfort of their own home for longer.
You can find information through Your Care Navigator on organising equipment and arranging this in the Brisbane North and Moreton Bay region.
What financial support is available to me?
Being a carer can be costly and impose financial challenges. There are a number of payments options for which you may be eligible.
You can find financial information for carers in the Brisbane North and Moreton Bay region on Your Care Navigator.
How do I start having difficult conversations about planning for the future with the person I care for?
There are multiple ways to plan for difficult conversations.
To begin, you can seek guidance from their GP or geriatrician.
This website has information on having conversations about driving and dementia, and palliative care.
How do I recognise when I need a break as a carer?
Caring for a loved one or family member with dementia can be challenging. It's important to find support to make sure you're taking care of yourself too so that caregiving is more rewarding for you and the person for whom you're caring.
Learning to recognise the signs of caregiver burnout is important, so you can take action to prevent the problem from worsening.
You can learn more about the signs and symptoms of carer burnout through the HelpGuide.
If you need to find a counsellor or support group in the Brisbane North and Moreton Bay region, you can do so through the mental health and wellbeing page on Your Care Navigator.
What are the legal implications of a dementia diagnosis?
Dementia affects people differently. Having a diagnosis doesn't necessarily mean the person you care for has lost the capacity to make decisions. However, as the disease progresses, decision-making abilities may become more difficult.
Planning ahead will allow the person you care for to have a say in future decisions and make life easier for everyone involved by avoiding potential legal issues.
You can find more information through Your Care Navigator about legal issues involving finances and employment, medical decisions and driving.
What can I do if I'm concerned about the care my partner, relative or friend is receiving from a health professional or community provider?
You have a right to express your concern if you feel the level of care is not acceptable. There are a few ways to express your concern.
Advocacy organisations represent and work with people who need support and encouragement to exercise and uphold their rights.
Aged Care providers do their best to provide high quality care, but issues can occur and complaints are important to help service providers improve. Click 'Make an aged care complaint' for information for further information.
Click 'Make a QLD Health complaint' for further information.
What is going to happen over the course of the disease? What can I expect in the future?
Dementia is a progressive condition, normally characterised in three phases (mild, moderate and severe). You can find resources to learn about the progression of dementia on Your Care Navigator.
The symptoms and progression of the disease depend on the type of dementia each person has. It can be a challenging process to formally diagnosis the type of dementia. A doctor will try to diagnose the type of dementia through a number of cognitive and neuropsychological tests.
There are non-drug support services that can help dementia symptoms and behaviours. This includes: supporting physical health, mental health and wellbeing; staying active; and using supportive aids and safety equipment. Click 'Find support' to access these services.
There are also medications that can temporarily improve and manage symptoms of dementia. Speak to the doctor of the person you're caring for about the best course of medication treatment for them.
While there's no cure available for Alzheimer's and other common dementias, early diagnosis can help people and their families plan for the future.
Early diagnosis also gives people the opportunity to participate in clinical trials. This helps researchers develop new treatments and eventually find a cure. You can find more information about applying for clinical trials and the latest research below.
What if I am outside the North Brisbane and Moreton Bay region?
Your Care Navigator is focused on services for people living in the North Brisbane and Moreton Bay regions.
If you live outside of these areas there are a number of service directories and supports available to help find services to support you.
If you're looking for home support services, please click 'Navigate aged care in Australia' below.
Frequently asked questions
We acknowledge the Traditional Owners of country throughout Australia, their diversity, histories and knowledge and their continuing connections to land, waterways and culture. We pay our respect to all Australian Indigenous Peoples and their cultures, and to Elders of past, present and future generations.
We would like to express our gratitude to all the healthy ageing advocates, including people living with dementia, older people, families, carers and health professionals, who contributed to the development of this portal. Thank you for sharing your stories and transferring your knowledge to make this portal purposeful and meaningful to support people in the North Brisbane and Moreton Bay region.