The sections below contain information, tools and helpful strategies used by carers of people with young onset dementia.
Chapter One
Carers can learn more about dementia so you can adapt and continue living your life.

Understanding more about dementia can help you better prepare and adjust to life with dementia.

Understanding the specific type of dementia can help you better prepare and adjust to life with dementia

Make a follow-up appointment with your doctor to find out more and ask questions

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

Dementia progresses differently for each person

Life with dementia, despite the challenges, can be meaningful and even bring surprising rewards

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

Learning how others have adjusted and moved forward with dementia give a sense of hope

Support is out there, but it is how you use it that is important

Children and teenagers have particular needs

Plan to have, and use, the right supports, to ensure that you do not become exhausted by your caring responsibilities

Many families want to know about the risk of inheriting dementia or ‘passing it on’ to children or grandchildren
Chapter TWO
Understand and process your feelings.

Reactions to the diagnosis bring strong emotions in the following days and weeks

Expressing, talking through and accepting your feelings about the dementia diagnosis

Sometimes intense feelings last for a long time and don’t seem to resolve

Developing (and using) support networks helps you both move forward, positively

Open and honest sharing can help you express your feelings and support each other

Sharing the diagnosis helps you come to terms with it, and ultimately get the support you need

Carers and people with dementia describe a range of reactions when they tell others of the diagnosis

Sharing the diagnosis may help you come to terms with it, others to understand and ultimately, get the support you need

It is helpful for professionals who provide services to know that the person has a dementia diagnosis

Depending on your work role, you may be able to have adjustments to your role to continue working

Strategies for when others treat you differently because of dementia

Other people are often willing to help, but are unsure how to do so

Some health professionals may not have much experience with dementia
Chapter THREE
Strategies to manage symptoms and changes.

Dementia brings many changes. Being prepared helps you give and get the best support

Memory and thinking difficulties are common to dementia, but don’t have to define your life

Behaviour and personality changes can be challenging, but they are part of the illness and not a reflection of the person

Communication difficulties are common in dementia, but they do not mean connection is lost

Dementia can damage parts of the brain that interpret information from the senses

Medications may be useful to manage changes in dementia

Cognitive stimulation, cognitive training and cognitive rehabilitation

Dementia makes it harder to learn new things but people with dementia can develop new habits

Strategies that reduce anxiety for people with dementia

Understanding why these changes occur is key to managing them effectively

Communication changes are common early symptoms in in young-onset dementia

Dementia can damage parts of the brain that interprets information from the senses

A few key changes in the home will support people with dementia to function better

Strategies to help maintain focus and stay on task

Setting up a task and providing encouragement can help the person maintain a skill and preserve their self-esteem

It is not always necessary to give up driving straight after a diagnosis, but the driving authority and insurer must be informed

Start discussions as early as possible and get professional support if needed

Taxi subsidies, community transport and other strategies when the person you support stops driving

It is important for you both to keep social and other activities outside home

Using the right therapies can help symptoms

Considerations for living at home or moving to supported accommodation

Use services to ensure the person you support can keep living successfully at home

Use products that help people with dementia stay connected and safe

Living alone may be possible but requires planning and support

Thinking about a time you may no longer be able to live independently is challenging, but early planning ensures you have a say in where you will live
Chapter FOUR
Improve your physical and emotional health.

Looking after your physical, mental, and emotional health helps you both move forward

Exercise can help improve or maintain memory, thinking and daily function

Eating well is important as diet has a big impact on brain health, energy levels and mood for you and the person you support

Planning your day to incorporate rest and sleeping well are essential to wellbeing

Dementia can last a long time. Attending to your mental and physical health as a carer is critical.

There is a strong link between your mental health, mood and how well your brain is working

Staying socially connected is important for your wellbeing
Chapter FIVE
Plan for now and the future.

Make a life plan and put it into action so you can keep doing the things that matter to you

Creating a life plan is a series of steps

Things won’t always go to plan – adjust, adapt, and keep moving forward

Learning about services and getting them in place is an important part of moving forward

There are services for people living with younger onset dementia and supporters Navigating services for people with young-onset dementia can be complex. You may need to work with a range of government departments, services or employers. People who live in rural and remote areas may have fewer options. It is important to know that many…

The NDIS funds services to enable the person with younger-onset dementia to live their daily lives

These might offer an array of services, groups, and activities

For the person living with dementia, there will come a time when it will be difficult to express wishes, so it is important to have plans for the future in place

There may come a time for all of us when we can’t make decisions about our medical care, health, or lifestyle – such as whether to move into residential care

Power of attorney, protection from financial abuse, and preparing will(s)

Get important documents in one safe place and make sure people you trust know where they are
Downloads
Access worksheets, discussion primers and more.
Search for answers
Learn from others
Read stories of real people who have experienced a dementia diagnosis.
Stories
By the time she received a formal diagnosis in 2020, our family’s life plan was already “scrambled” – I didn’t know what to expect or where to go for help.
Stories
Living alone doesn’t equate to being lonely! Michael is optimistic and hopes his ideas and experiences will help others.
Stories
No one thought to consider how Carol was feeling or about how her life would be changed by the diagnosis.