Information for People Living With Dementia

Information for People Living With Dementia

A diagnosis of dementia can come as a shock to you as well as your family and friends. Even if you have been expecting the diagnosis, it is likely to be a very worrying and upsetting time.

There are a number of things that you can do in the early stages to help make your life easier and more enjoyable, both now and in the future. The focus should be on maintaining a good quality of life and a sense of wellbeing for you.

Early Considerations


Talking about your diagnosis

It’s generally a good idea to talk about your diagnosis with family and friends. There are a number of dementia services that can help you, however the support of your family and friends can be vital, so it’s a good idea to get them involved early and keep them informed.

If you are feeling anxious or depressed about your diagnosis, you might like to talk to someone outside your family about your feelings, such as your GP or a psychologist.

Alzheimer’s Australia (Qld) offers free one-on-one counselling sessions for people affected by a diagnosis of dementia, including friends and family.

Learning all you can about dementia

There are many online resources you can use to increase your knowledge about dementia. A good place to start is Alzheimer’s Australia’s website or our ‘what is dementia’ section.

You can also attend free events held in Queensland held by Alzheimer’s Australia and Alzheimer’s Queensland:

  • Alzheimer’s Australia holds information sessions for people wanting to learn more about dementia, view their upcoming events
  • Alzheimer’s Queensland offers free seminars and workshops around Queensland, view their upcoming workshops and seminars

Connecting with services and support

There are a range of services available to you and your carer, if you have one. These are split up into two categories; advice and care services.

Advice Services
There are three organisations in Queensland that provide free advice and support to people living with dementia, their family, and carers. The programs vary slightly, but they all provide you with information, practical strategies, support, and link you with other services in your community.

These are:

Care Services
Most major care providers in Queensland offer home care, respite care, and residential aged care for people living with dementia. Ozcare is the only care provider that also has a team of dementia specialists who provide expert advice and support whether you have recently been diagnosed or have been living with dementia for many years.

Read more about our dementia services.

Living Well With Dementia


Adjustments for your home

It may be useful to make adaptations to your home to assist you to live more comfortably and safely there for as long as possible. However, as most people function better in a familiar environment, try to keep your home easily recognisable.

  • Place helpful telephone numbers by the phone where you can see them
  • Put things you use all the time, such as your keys or glasses, in an obvious place like a large bowl in the kitchen
  • Purchase a calendar clock which will remind you of the date as well as the time
  • Put labels on cupboards or drawers to remind you where things are, or replace some solid cupboard doors with see-through ones
  • Write reminders to yourself, for example, to lock the door at night, or put out the rubbish on a certain day
  • Make sure your home is well lit, and consider removing trip hazards such as rugs
  • Reduce clutter around your house
  • Consider having an occupational therapist (OT) visit your home to assess your requirements and suggest changes or equipment that will benefit you

These changes may not be right for everyone, so consider what your preferences are before you introduce them.


Practical ways to assist your memory

The best way you can assist your memory is by having a routine. Doing things at the same time each day or each week can help you to maintain a good quality of life and give you reassurance that you can continue the things you always do.

Some other ways you can support your memory include:

  • Keeping a detailed calendar or diary of your life, including who, where and when
  • Placing regularly used items, such as your handbag, wallet and keys, in the same place each time you use them
  • Repeating a person’s name in conversation when you first meet them
  • Using name tags, labels, or signs where possible
  • Arranging things in your kitchen so that items that are commonly used together are placed in the same area, such as tea bags, sugar, cups, and spoons for a tea making station


Maintaining an active life

You can continue to enjoy an active life with dementia. It’s possible that some of your previous interests may seem too stressful or demanding, and it may be worth considering some new options, such as:

  • Joining a dementia support group
  • Reading about other people's experiences living with dementia
  • Listening to music
  • Knitting
  • Gardening
  • Playing a game
  • Exercising, such a walking with a friend or taking your dog to the park
  • Visiting friends and family. If large groups make it harder to follow conversation, organise smaller outings with a few friends or family members
  • Starting a life history book. Use a simple scrapbook or photo album to record details of your past and present life that will be helpful for anyone who may be supporting you, and for you to look back through

Keep doing things you enjoy for as long as possible. If you are finding them more difficult, try doing this at a slower pace or making small adjustments until you feel more comfortable. Concentrate on what you can do, rather than what you can't.


Taking care of your health

It is important to take good care of your health. These tips will help to keep your body and mind active and may help with your symptoms.

  • Eat balanced meals, if you’re finding this difficult it may help to speak with a dietitian
  • Drink water
  • Exercise regularly, such as going for a walk with a friend
  • Keep your brain active by challenging yourself, reading, or learning a new skill
  • Have a regular bed time to make sure you get enough sleep, around 8 hours is recommended
  • Have regular check-ups with your doctor, particularly if you are on medication
  • Have your eyes, teeth and hearing checked on a regular basis

Having dementia should not mean that you feel ill, visit your doctor if you feel unwell.

Preparing for the Future


Driving with dementia

A diagnosis of dementia does not mean you are immediately incapable of driving, however as the disease progresses your ability to drive may be affected by a loss of memory, limited concentration, and sight problems.

In all Australian states and territories, except Western Australia, you have an obligation to tell your licensing authority of any medical condition that might affect your ability to drive safely, including dementia.

The licensing authority will generally ask your doctor to assess whether it is safe for you to keep driving. Your doctor might recommend one or more conditions be placed on your license, such as only driving close to home, at certain times, or below 100km/h. Regular medical and driving tests may be required to ensure it is safe for you to continue to drive.

In the early stages of dementia, you might like to consider your future plan for when you will stop driving, to avoid issues of suddenly finding yourself without the ability to drive yourself around.


Employment

Depending on whether you are still in the workforce, you may need to consider whether you would like to change your duties, reduce your duties, or stop working altogether.

It’s a good idea to speak with your manager about your options before you make your final decision.

If you decide to keep working, consider creating a plan for when you will look at reducing your hours or retire.


Important documents and legal considerations

The early stage of dementia is the best time to make sure your important documents are in order and can easily be found.

These include:

  • Your mortgage or tenancy agreement
  • Birth and marriage certificates
  • Passport
  • Medicare card
  • Insurance policies
  • Bills
  • Bank statements
  • Enduring Power of Attorney
  • Advance Health Directive
  • Will

Be sure to go through all the details with a member of your family, partner or trusted friend.

Bills
Make sure you keep a record of your bills, including how you made payment. List any direct debits (an authorisation for a specific company to debit your account on the due date of a bill automatically) you have set up for your credit card and your bank account. If you’re not currently using direct debit this is a good opportunity to set this up with each of your providers.

Enduring Power of Attorney
An Enduring Power of Attorney allows you to give your nominated attorney (such as your partner, a member of your family, or a trusted friend) the power to make financial, personal, and health decisions on your behalf, if you are unable to do so. Read more on the Queensland Government’s Public Guardian website about an Enduring Power of Attorney.

Will
Having a will is crucial for everyone over the age of 18, no matter the size of your estate.

  • If you already have one, now is a good time to review it and make sure it reflects your current wishes
  • If you don’t currently have a will, contact your solicitor or the Public Trustee of Queensland to create one 

Advance Health Directive
An advance health directive is a document which details your choices and instructions for your future health care. It comes into effect only if you are unable to make your own decisions.

Before creating your directive, speak with your doctor, family, friends, and your solicitor about what it should include and what options are available or most suitable for you.

Read more on the Queensland Government’s Public Guardian website about advance health directives.


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