Living well with dementia after diagnosis

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

Common feelings are:

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

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

Keep doing the things that make you happy. This might be spending time with loved ones, going for a walk or listening to music.

If you look after your wellbeing, and plan for what support you will need, you can continue to live well and enjoy your life.

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

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

Sharing your diagnosis

It's a good idea to share your diagnosis with a close family member or friend. You might also want to talk with a counsellor.

Emotional and practical support is important, especially as your dementia progresses (gets worse). With support, you can still live a full and active life with dementia.

Learning more about dementia

You might want to learn more about dementia. This may be stressful or upsetting. 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 (Opens in new tab).

Everyone experiences dementia differently. But common symptoms, such as memory loss, problems with language and getting confused easily, can make everyday tasks more difficult.

You may begin to struggle with tasks such as:

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

It's a good idea to talk to someone about this. It's okay to ask for help.

Driving and dementia

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

If you drive, you must tell the licensing 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. The laws about driving with dementia vary between states and territories.

If you begin to find driving difficult, think about the best time to stop, for the safety of yourself and others.

Work

If you are diagnosed with dementia and are still working, you should consider making a plan with your employer.

If you want to stay at work, you will need to let your employer know about your condition. You may need to change roles or parts of your job to make things easier. It's important to plan for this discussion. It might be a good idea to take a trusted person with you for support.

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

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

It can be helpful to talk about this decision with someone you trust. This might be a family member or your doctor.

Looking after yourself

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

• eat a healthy diet
• drink plenty of water
• be physically active — doing housework or walking is a good start
• get enough rest and take time to relax and to do things you enjoy
• take your medicines as instructed by your doctor
• get your vision and hearing check-ups when they are due

It is also important to look after your mental health. You can do this by:

• spending time with family and friends
• joining a support group
• keeping a journal
• getting help if you have depression

Shopping and food preparation

Dementia can make tasks such as food shopping and cooking hard.

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

• Organise 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 have 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

Speak with your doctor or dietitian about maintaining good nutrition with dementia.

If you have dementia, you may find it harder to maintain personal hygiene and grooming. 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. You also can visit a podiatrist or get a manicure.

Home modifications, such as a grip rail or shower seat in the bathroom can help you stay 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 your 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 in time
• emptying your bowel or bladder properly

If you become incontinent, it's important to see your doctor to rule out other treatable causes.

There are strategies you can use to help avoid toilet accidents:

• Make sure your toilet is easily accessible. A raised toilet seat and grab bars nearby can help.
• Make your toilet seat easy to see 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.

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 create a more dementia-friendly home. Download the Dementia-Friendly Home app (Opens in new tab) to guide you.

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

Support at Home

Support at Home has replaced other Australian Government home care packages. The Support at Home programs can help you:

• live at home longer
• stay part of your community
• get the help you need

Support at Home can provide services, such as:

• help with household tasks such as cleaning, laundry and shopping
• home maintenance and repairs
• meal preparation
• transport
• personal grooming
• nursing care and help taking medicines

My Aged Care offers Support at Home (Opens in new tab) for adults who are 65 years old or older. Aboriginal and Torres Strait Islander peoples may be eligible from the age of 50.

You will need to be assessed to see if you qualify for support. Different levels of support are available according to your needs and circumstances. Visit My Aged Care (Opens in new tab) to start your assessment online (Opens in new tab).

The National Disability Insurance Scheme (NDIS)

The NDIS funds support services for people aged under 65 who have a disability. If you have younger-onset dementia, this might apply to you. Visit the NDIS website (Opens in new tab) for more information (Opens in new tab).

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 with this.

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

Here are some activities to consider:

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

People with dementia who have had pets throughout their lives often find their pets comforting. Pets can help you feel calm and safe when you are stressed or confused.

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.

In your plan, include what you would like to happen to your pet in the future, if you can no longer 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 early makes it easier for you to manage your financial, legal and medical affairs.

Things to think about include:

• your future living arrangements
• organising 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 nominate 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 person that you choose 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 to nominate someone is completed.

For more information on powers of attorney, visit the My Aged Care website (Opens in new tab).

Legal matters

Do you have a will? This is a good time to check it's up to date and easy to find. Tell someone that you have a will and where it is.

Advance care planning

You can also make an advance care plan. This is a document setting out your wishes about future medical treatment. This plan tells your loved ones and health providers your treatment preferences, when you can no longer tell them yourself.

For more information about making an advance care plan, visit the Advance Care Planning Australia website (Opens in new tab).

Depending on your needs, you might need informal or formal care.

Informal care

Informal care is when a family member or friend becomes your carer and helps you with daily tasks. This type of care can help you live well and stay in your home longer.

Depending on your care needs, a carer can help for a few hours a week or be there all day, every day.

Having an informal carer can change your relationship with your family member or friend, but it can also make you feel closer to them.

Your carer may be eligible for a carer allowance. Learn more at Services Australia.

An informal carer may also need emotional support as they care for you. It's a good idea for them to join a support group. Visit the Carer Gateway (Opens in new tab) for more information about carer support groups.

Later, you might need to have a formal care service.

Formal care

Formal care includes professional services that can help with your daily needs. The type of service you need depends on your situation.

Types of formal care include:

• home care — for extra support at home from a nurse or other healthcare professional
• respite care at home — short-term care from a care worker during the week, at weekends or overnight. This can give your regular carer some time to take a break.
• respite care out of home — group activities at a local day centre
• respite care at a residential care centre — some residential care centres offer overnight stays or stays for a few days
• residential care home — as your dementia progresses it might not be safe for you to live at home, and you can move to a care home for specialised care

Dementia Australia (Opens in new tab) has lots of information about dementia, what to do after diagnosis (Opens in new tab) and support (Opens in new tab).

Visit My Aged Care (Opens in new tab) to find out more about how aged care support services can help in your situation and for help finding a care provider (Opens in new tab). Support at Home (Opens in new tab) is a My Aged Care program.

Read more about financial support (Opens in new tab) and training for carers (Opens in new tab) at the Carer Gateway.

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 you 24 hours a day, 7 days a week.

Languages other than English

Health Translations has information about dementia (Opens in new tab) in several languages. Read what to do after you're diagnosed (Opens in new tab).

Information for Aboriginal and Torres Strait Islander peoples

Visit Caring for Spirit (Opens in new tab) to find out more about what is dementia, living with dementia (Opens in new tab) and where to get support (Opens in new tab).