Coming to terms with dementia
Carers can understand and process their feelings
1.1 Diagnosis is the first step in moving forward
Knowledge is power. Understand your symptoms, treatment options, and take steps to adjust to life with dementia
1.2 Types of dementia
Understand your type of dementia so you can adjust
1.3 What to ask your doctor
Your doctor can advise you on treatments and lifestyle
1.4 Learn from dementia experts
Some people prefer to have as much information as possible, and others prefer to focus on what they need to know right now. Choose what information you need, and in what form.
1.5 Find hope
Have hope! You can adjust to dementia and continue living your life
1.6 Bust dementia myths
Don’t be trapped by stereotypes of dementia
1.7 Learn from others with dementia
For many people, meeting others living with dementia was a turning point in finding hope
1.8 Progression of dementia
Some people want to know everything about dementia including what will happen in the future. Others don’t want to think about the future yet. Read this page when you’re ready
1.9 Your family’s risk of dementia
Many people with dementia are concerned about whether it is a genetic disease, and whether their children or grandchildren are more likely to get dementia
2.1 Emotional reactions to having dementia
Managing your feelings is a key step in moving forward with dementia
2.2 The idea of having dementia
If you’ve just been diagnosed, the idea of having dementia can often be more disabling than your current symptoms of dementia
2.3 Support to adjust to diagnosis
Counselling, support groups and advisors help you come to terms with diagnosis
2.4 How you feel about yourself
Be confident and positive, you are not your dementia
2.5 Practice positive self-talk
Techniques to boost self-image and challenge self-stigma
2.6 Help for depression and anxiety
Get treatments for your mental health
2.7 Family and friends’ reactions
Your diagnosis affects others. Share your diagnosis and move forward with dementia together
2.8 Share your diagnosis, your way
You are in control of who you tell your diagnosis to, how you tell them, and when you tell them
2.9 Telling friends and family
Start by telling the people you feel closest to
2.10 Tell other health professionals
Share your dementia diagnosis with other health professionals and be assertive about getting therapy
2.11 Tell your employer
Depending on your work role, you may be able to continue working or make adjustments to your role
2.12 Manage stigma from others
Strategies for when others treat you differently because you have dementia
2.13 Manage how you do and don’t want to be treated
Be assertive telling others how you do and don’t want to be treated
3.1 Managing symptoms to achieve what’s most important
Live a meaningful life with dementia with the help of strategies and therapies
3.2 Memory, thinking and perception difficulties
Difficulties with memory or thinking are defining features of having dementia and make it harder for people with dementia to go about their lives
3.3 Memory and thinking strategies
Many people use strategies to help with their memory and thinking. Here are some strategies that people with dementia use
3.4 Therapies to help memory and thinking
Therapies including medication, brain training, cognitive rehabilitation and cognitive stimulation therapy to help with memory and thinking difficulties
3.5 Driving when you have dementia
When people are told they have dementia, they often worry about whether they will be allowed to drive, or whether they should still drive
3.6 Strategies from others who stopped driving
People with dementia use a range of strategies and different travel options to get to the places they need to go
3.7 Transport options for people with dementia
If you can no longer drive, there are Government programs that provide taxi subsidies and community transport options
3.8 Dementia makes activities outside home harder
It’s often harder to get out of the house and do things with dementia
3.9 Strategies from others for when you are out and about
People with dementia share their strategies to overcome difficulties when out and about
3.10 Dementia friendly groups
At dementia friendly groups or activities, people are more accepting of your symptoms
3.11 Speech and occupational therapy
Speech and occupational therapy help you undertake day-to-day activities and maintain your independence
3.12 Dementia makes it harder to manage at home
There are things you can do to help your daily activities and reduce the risk of an accident
3.13 Strategies from others to deal with difficulties at home
Strategies used by people with dementia to overcome difficulties and keep safe at home
3.14 Occupational therapy and home modifications
Occupational therapists can help you overcome difficulties and identify home modifications to keep you safe at home
3.15 Services which support you at home
Cleaners, gardeners and handymen can do jobs that might be difficult or dangerous for you
4.1 Your physical health affects your brain health
Keep physically healthy to improve your quality of life
4.2 Exercise to boost your physical health
Exercise can help to improve or maintain memory, thinking, and the daily function of people with dementia
4.3 Eat and drink well
Try to eat fresh, healthy food which includes lots of fruits and vegetables as your brain will work best with this fuel
4.4 Rest well
With dementia, even doing usual activities can be mentally tiring
4.5 Attend to other health issues
If your overall health is well managed, your brain health will benefit
4.6 Build emotional resilience
There is a strong link between your mental health, mood and how well your brain is working
4.7 Be mentally active
People with dementia can grow new brain cells and connections
4.8 Be socially active
Keep spending time with friends
4.9 Join a group to be more socially active
A local group or club is a great way of socialising and meeting new people
5.1 Make a plan for this year
Your life plan is flexible. As things change in your life, your plan might need to change
5.2 Put your life plan into action
Once you have your life plan, put it into action. Things won’t always go to plan, so adjust and adapt along the way
5.3 Plan to use services
Services help you maintain independence and provide practical and emotional support to improve your wellbeing
5.4 Talk to your family about your future wishes
Talking to your family means that they know what your future wishes are
5.5 Plan for when you can’t make decisions
Organising enduring power of attorney, enduring guardianship and an advance care plan ensures your wishes will be undertaken in the future
5.6 Your will
Express your wishes for the future through your will, enduring power of attorney, enduring guardianship
5.7 Financial planning
Put financial plans in place so you can be involved in decisions about future care needs
5.8 Organise important documents
Get important documents in one safe place and make sure people you trust know where they are
1.1 Information about the diagnosis will help you move forward
Caring for, or supporting, someone with a dementia diagnosis is not easy. Understanding more about dementia can help you better prepare and adjust to life with dementia
1.2 Understand the types of dementia
Getting information and understanding the specific type of dementia can help you better prepare and adjust to life with dementia
1.3 Ask the doctor for information about dementia
Make a follow-up appointment with the doctor to find out more and ask questions
1.4 Get trustworthy, up-to-date information
Choose what information you need, and in what form. Some people are happy reading on the computer, some like videos, others like printed brochures or books
1.5 Finding hope
Life with dementia, despite the challenges, can be meaningful and even bring surprising rewards
1.6 Break down myths and stereotypes
Many people with dementia do a lot for themselves and for others and are in control of their lives, even if they get help for some tasks
1.7 Learn from others leading meaningful lives
Learning how others have adjusted and moved forward with dementia give a sense of hope
1.8 The progression of dementia
Dementia mostly progresses slowly but the progress differs for each person
1.9 Plan to get support
Support is out there, it is how you use it that is important
1.10 Plan for now and the future
Plan to have (and use) the right supports, and ensure that you do not become exhausted by your caring responsibilities
1.11 Your children’s risk of dementia
Many families want to know about the risk of inheriting dementia or ‘passing it on’ to children or grandchildren
2.1 Strong emotions with a dementia diagnosis
Carers describe strong emotional reactions to being told the diagnosis
2.2 Working through feelings is a positive step
Expressing, talking through and accepting your feelings about the dementia diagnosis
2.3 When feelings threaten to overwhelm you
Sometimes intense feelings last for a long time and don’t seem to resolve
2.4 Plan to prevent depression
Plan ahead to help avoid becoming depressed, and feel more in control
2.5 Talking about the dementia diagnosis
Open and honest sharing can help you express your feelings and support each other
2.6 The person with dementia won’t talk about their diagnosis
Sharing the diagnosis helps you to come to terms with it, and ultimately, get the support you need
2.7 Reactions of family and friends to the diagnosis
Other carers describe a range of reactions by family and friends when they tell them about the diagnosis
2.8 Sharing the diagnosis with family and friends
Sharing the diagnosis helps you to come to terms with it, others to understand and ultimately, get the support you need
2.9 Sharing the diagnosis with professionals
It is helpful for professionals who provide you with services to know that the person has a dementia diagnosis
2.10 Sharing the diagnosis with employers
You may need workplace changes so you can provide the sort of support you want to give
2.11 Managing how others treat you and the person you support
Strategies for when others treat you differently because of dementia
2.12 Be assertive with doctors and other professionals
Some health professionals may not have much experience with dementia
2.13 Tell others how you want to be supported
Caring for a person with dementia takes time and energy. As a carer, you will need support yourself
3.1 Dealing with memory and thinking difficulties
Memory and thinking difficulties are common to dementia, but don’t have to define your life
3.2 Medications
Strategies, therapies and medications to help with memory and thinking difficulties
3.3 Cognitive therapies and rehabilitation
Cognitive stimulation, cognitive training and cognitive rehabilitation
3.4 Strategies to help with memory and thinking difficulties
Dementia makes it harder to learn new things but people with dementia can develop new habits
3.5 Sensory and perceptual changes
Sometimes dementia damages the part of the brain that interprets information from the senses
3.6 Managing anxiety about memory and thinking difficulties
Strategies that reduce anxiety for people with dementia
3.7 Helping people with dementia to stay on task
Strategies to help maintain focus and stay on task
3.8 Helping without taking over
Setting up a task and providing encouragement can help the person maintain a skill and preserve their self-esteem
3.9 Dealing with driving
It is not always necessary to give up driving after a diagnosis but the driving authority and insurer must be informed
3.10 Supporting someone to stop driving
Start discussions as early as possible and get professional support if needed
3.11 Transport alternatives
Tax subsidies, community transport and other strategies when the person you support stops driving
3.12 Dealing with symptoms when out and about
Supporting someone with socialising and activities outside the home
3.13 Use therapies to help people maintain independence
Supporting someone with socialising and doing activities outside the home
3.14 Dealing with symptoms at home
Considerations for living at home or moving into a retirement village
3.15 Create a dementia-friendly environment
A few key changes in the home will support people with dementia to function better
3.16 Assistive technologies at home
Use products that help people with dementia stay connected and safe
3.17 Use services to support living at home
Use services to ensure the person you support can keep living successfully at home
4.1 Live well to care well
Look after your physical, mental and emotional health, it will help you both move forward
4.2 Types of exercise
Exercise can help to improve or maintain memory, thinking, and daily function
4.3 Eat well
Eating well is important as diet has a big impact on brain health, energy levels and mood for you and the person you support
4.4 Get plenty of rest
As we get older, we all experience changes to our sleep patterns
4.5 Look after your own health
Avoid carer burnout. Prioritise taking breaks that will ‘recharge your batteries’
4.6 Build your emotional resilience
There is a strong link between your mental health, mood and how well your brain is working
4.7 Practise self-care
Self-care is an investment in your own mental health and helps you move forward in supporting someone with dementia
5.1 Plan for now to live well
Make a life plan and put it into action to help you move forward
5.2 Make a life plan for this year
Creating a life plan is a series of steps
5.3 Putting your life plan in to action
Things won’t always go to plan, so adjust and adapt along the way
5.4 Know about support services
Learning about services and getting them in place for you and the person you support is an important part of moving forward
5.5 Types of Services
There are services for the person with dementia and for carers
5.6 Getting services – My Aged Care
This page on government services through My Aged Care is for people 65 years or over
5.7 Getting services – National Disability Insurance Scheme
The NDIS funds services to enable the person with younger onset dementia to live their daily lives
5.8 Getting services – Local organisations and councils
These might offer an array of services, groups and activities
5.9 Ensure plans for the future are in place
For the person with dementia, there will come a time when it will be difficult for them to express their wishes so it is important to have plans for the future in place
5.10 Plan for future lifestyle, health and medical care
There may come a time for all of us when we can’t make decisions about medical or health care, or lifestyle decisions, such as whether to move to residential care
5.11 Plan your legal affairs and money
Power of attorney, protection from financial abuse and preparing will(s)
5.12 Sort out important documents
Get important documents in one safe place and make sure people you trust know where they are
5.13 Plan for emergencies
People living with dementia may not cope as well with sudden changes of routine or find the added stress of an emergency very distressing
Telling someone they have dementia
The way you tell someone they have dementia impacts on how they and their families accept, adjust and move forward with managing their diagnosis
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