How can I deal with my dementia diagnosis?

Being diagnosed with dementia can be difficult. You might feel a mix of emotions after being diagnosed with dementia. Your feelings may also change over time as you process this information.

Common feelings are:

• shock
• denial
• fear
• anxiety
• a sense of loss
• isolation

You may feel a sense of relief at finally knowing what is causing your symptoms.

Recognising your emotions can help you to process them. Talking about your feelings with your doctor, family and friends can also help.

You can also call the National Dementia Helpline on 1800 100 500.

Sharing your diagnosis

It's a good idea to share your diagnosis with a close family member or friend. Or you may want to talk with a counsellor.

Emotional and practical support is important, especially as your dementia progresses. With support, you can still live a full and dactive life with dementia.

Learning more about dementia

You might want to learn more about dementia. This may be uncomfortable. But understanding what you might experience in the future can help you plan for it.

There are many resources available, including Dementia Australia's Living with dementia program.

How will I do everyday tasks?

Everyone experiences dementia differently. But common symptoms, such as memory loss, language difficulties and disorientation, can make everyday tasks more challenging.

You may begin to struggle with tasks such as:

• driving
• working
• shopping and food preparation
• personal care
• home

Driving and dementia

As your dementia progresses, memory loss and disorientation can affect your ability to drive.

If you drive, you must tell the licencing authority and your car insurer about your diagnosis.

Ask your doctor for more information about any tests you may need if you want to continue driving. These vary between states and territories.

Work

If you are diagnosed with dementia and are still working, you will need to plan ahead.

If you want to stay at work, you will need to talk to your employer about your condition. You may need to change roles or change parts of your job to make things easier. It's important to plan for this discussion, and perhaps take a trusted person with you.

If you are planning to leave work, it's important to think about this carefully and not to rush it. Consider whether you can get financial support through:

• income protection
• accessing your superannuation
• the disability support pension — find out more on the Services Australia website
• the National Disability Insurance Scheme (NDIS), which is available to help people under the age of 65 years access support services

Looking after yourself

After a dementia diagnosis, it's important to look after your health. This includes:

• eating a healthy diet
• drink plenty of water
• exercising regularly
• getting plenty of rest and relaxation
• taking your medicines as instructed by your doctor

Shopping and food preparation

Dementia can also make tasks such as food shopping and cooking extra challenging.

Here are some strategies that can help you eat well with dementia:

• Arrange regular delivery of groceries or prepared meals.
• Ask your social worker or local council about meals-on-wheels programs.
• Keep easy-to-eat snacks in view (non-perishable).
• Choose simple finger foods that are easy to prepare.

If you experience changes in your appetite or forget to eat or drink, try:

• setting a meal-time reminder on your alarm clock or phone
• eating meals with other people when possible

If you would like more information and advice about maintaining good nutrition with dementia, ask your doctor or dietitian.

How can I meet my personal grooming needs?

Some people with dementia struggle to maintain personal hygiene. This can be caused by problems with your memory, coordination and balance.

If you tend to forget, set timers to remind you to shower, shave or brush your teeth.

If you struggle to cut your nails, ask for help from a friend or family member. Or you can visit a podiatrist or get a manicure.

Home modifications, such as a grip rail or shower seat in the bathroom can help you remain independent. You may find it easier to shower than to lift yourself in and out of the bath.

What should I do if I develop incontinence problems?

The changes in the brain caused by dementia can cause incontinence (loss of bladder or bowel control). You may have trouble:

• knowing when you need to use the toilet
• being able to wait to use the toilet
• finding the toilet
• emptying your bowel or bladder properly

If you develop incontinence, it's important to see your doctor to rule out other treatable conditions.

There are many strategies you can use to manage incontinence:

• Make sure your toilet is easily accessible. A raised toilet seat and grab bars nearby can help.
• Make your toilet seat easy to recognise by choosing one that is a different colour to the floor.
• Choose toilet paper that's a different colour to the wall.
• Use food dye or a cleaning tablet to colour the water in the toilet bowl. This will help you identify the toilet bowl.
• Choose clothing that is simple to remove. Consider pants with elastic waistbands or Velcro closures instead or buttons or zippers.
• Consider using incontinence pads to protect your clothing in case of an accident.
• Plan to use the toilet at set times during the day. Use a timer if you think you will forget.

An occupational therapist can give you information and advice about equipment and strategies that can help.

Changes to your home

There are many things you can do to help you remain as independent as possible. Keeping your house free of clutter will help reduce your chance of falling.

You can also make changes to make your home dementia-friendly.

You can download the Dementia-Friendly Home app to help guide you.

An occupation therapist can also recommend home modifications and equipment that you may find helpful. Find out more about dementia friendly homes.

Can I still do activities and hobbies with dementia?

Staying involved in activities you enjoy will help you live well with dementia.

Many people with dementia continue to do hobbies that they enjoy, with some changes and support. You can ask your friends and family to help you keep doing activities you enjoy.

Try and be patient with yourself. Choose simple, accessible activities for best enjoyment.

Here are some activities you may enjoy:

• walking with others
• looking after pets
• gardening
• listening to music
• looking through old photos or memorabilia and sharing them with others

Can I still look after a pet if I have dementia?

People with dementia who have had pets throughout their lives often find their pets comforting. Pets can be especially reassuring and soothing during times of stress or confusion.

Some symptoms of dementia can make pet care more difficult. Memory loss may mean you forget to feed or exercise your pet.

If you have a pet, it's a good idea to make an animal care plan soon after your diagnosis. This can include what needs to be done to care for your pet each:

• day
• month
• year

Having an animal care plan can help you remember the tasks you need to do to care for your pet. It can also guide your friends, family or other support people to help you look after your pet.

It should also include what you would like to happen to your pet when you can't look after it.

In the later stages of dementia, some people find simulated pets comforting. These can be soft toys or robotic pets. While not the same as a real animal, they can give some of the pleasure of pet ownership without the responsibility.

Planning for the future

Planning early makes it easier for you to manage your financial, legal and medical affairs now and in the future.

Things to think about include:

• your future living arrangements
• arranging when and how you will access your finances
• sorting out your superannuation, health and income insurance
• writing or updating your will

Finances

If you have dementia, it's important to think about nominating a trusted person to manage your affairs in the future. You can do this through an Enduring Power of Attorney (EPA).

An EPA allows a nominated person to look after your financial or legal affairs. The laws regarding EPAs vary between states and territories. It's important to get legal advice before the agreement is completed.

For more information on powers of attorney, visit the My Aged Care website.

Legal matters

Think about whether you have a will. Is it up to date and easy to find?

Medical care

You can also make an advance care plan, which is a document setting out your wishes about medical treatment in the future. This helps to ensure your loved ones and health providers know your treatment preferences.

For more information about making an advance care plan, visit the Advance Care Planning Australia website.

Resources and support

To learn more about dementia, you can:

• call the National Dementia Helpline on 1800 100 500
• visit Dementia Australia

Visit myagedcare for information about government-funded aged care support services in Australia.

You can also call the healthdirect helpline on 1800 022 222 (known as NURSE-ON-CALL in Victoria). A registered nurse is available to speak with 24 hours a day, 7 days a week.