Dementia: planning for the future
Having Alzheimer's disease or another form of dementia will bring many changes in your life. At first, you may have trouble finding words or remembering names and other information. Later you may feel confused, irritable and frustrated and find it difficult to make decisions. These are all symptoms of dementia.
Some people with dementia may remain at the same level of functioning for some time before noticeable changes occur. But the disease is progressive and it will continue to reduce your ability to function in your usual activities. However, support is available from many people such as family, friends, your local Alzheimer's Association, doctors and other health professionals, who will help you in the days ahead.
There are also a number of things you can do to help cope now and later on. You'll need to lead a less complicated life with a simple, fixed routine. It's a good idea to have fewer objects around you to misplace or cause accidents.
You'll come to rely more and more on family, friends and professional carers, and in time you will need to hand many responsibilities over to them. These may include managing your banking, preparing meals or keeping up with the housework.
When you have been used to being independent, or even caring for others, these changes can be hard to accept. Your new, dependent role may make you feel angry or depressed at times, but learning to accept help can be very rewarding both for you and those who love you. One thing that the disease won't change is your capacity to give and receive love, and to value the company of family and friends.
Day by day
Here are some practical suggestions to help maintain your well-being as you go about your daily routine.
- Be patient. You have an illness that is affecting many of your faculties, so don't be too hard on yourself.
- Accept help. Ask for help when you need it. Accept it when it is offered. Work with your family and friends to get the benefits and assistance to which you are entitled.
- Don't be embarrassed. When you have to ask people to repeat themselves, or explain something to you, simply tell them you have a memory problem.
- Write things down. Let pen and paper be your memory. Make notes to yourself, and others, of lists of things to do and reminders of where things are.
- Be habitual. Put important items such as keys, spectacles, dentures and money in the same place every time. And make a note of where that place is.
- Take care. Look after your physical health. Exercise regularly. Maintain your diet. Cut down on alcohol, or eliminate it entirely. Take your medicine as prescribed. Visit your doctor regularly.
- Talk with others. Tell your family and friends about your thoughts and feelings. If you are feeling sad and depressed, don't be afraid to admit it. If talking doesn't help, try writing a diary. Sometimes a simple medication can help to reduce such feelings. Your doctor can advise you.
Planning ahead
It is a good idea for you to make decisions about your future as early as possible in the course of the illness. Planning ahead assures you that your future will be in good hands.
Talking with your family about your preferences for the future will assist them to help you in the way you have chosen.
Money matters
Make sure that all your important documents such as insurance policies, mortgage and financial papers are the way you want them to be. Tell someone you trust where they are kept.
In most States and Territories a person can sign a document called an enduring power of attorney. An enduring power of attorney is a legal arrangement that enables a nominated person to look after your financial affairs if you become unable to do so.
More information about planning ahead for money matters can be obtained by contacting the National Dementia Helpline on 1800 100 500.
Legal matters
You may need to review your will to make sure that it is up to date and the way you want it to be.
In most States and Territories a person can appoint one or more people they trust to make important personal and lifestyle decisions on their behalf when they need assistance. These decisions may include choice of accommodation, recreational activities and holidays. In some States this includes health and medical decisions.
More information about planning ahead for legal matters can be obtained by contacting the National Dementia Helpline on 1800 100 500.
Work
If you are still working, consider speaking to your employer about dementia and your symptoms. It may be useful to take someone with you to help you explain. It may be possible to keep working a little longer by cutting down on your hours or your responsibilities. If you eventually have to give up work, find out about your entitlements.
If you are already retired, or have to stop working because of the illness, it is important to keep active. For some people, taking on voluntary work is one way to keep involved while continuing to make a valuable contribution to the community.
Medical care
In some States and Territories it is possible to appoint someone you trust to make medical decisions on your behalf if it becomes necessary. If you have not planned ahead, the law in every State and Territory allows a particular court to appoint someone to make decisions for you. Two types of tools are available to help plan ahead about medical treatment:
- enduring power of attorney: covers health matters. This allows you to appoint a person to be your substitute decision maker for medical decisions
- advance directive: a written document expressing your wishes about medical treatment
Different names may be used in some States and Territories, but the function of the document is much the same.
More information about planning ahead for legal matters can be obtained by contacting the National Dementia Helpline on 1800 100 500.
Who can help
A number of people and organisations can help explain these arrangements and how to make them work for you and your family:
- bank manager
- accredited financial adviser
- solicitor
- the Public Advocate, Public Guardian or Public Trustee in your State or Territory
Care arrangements
At some point, you may need extra assistance in your home, or alternative living arrangements. Consider what services are available, and where and with whom you might want to live. Talk about it with your family and friends.
Contact the National Dementia Helpline on 1800 100 500 for information about extra assistance or alternative living arrangements. Commonwealth Respite and Carelink Centres around Australia provide information about the range of community care programs and services available to help people stay in their own homes. Call 1800 052 222.
Further Help
The Living with Memory Loss program is available in each State and Territory. It consists of information and support groups for people living with early stage dementia and their family and friends.
A group program consisting of 6-8 sessions is usually held one day a week for a two-hour session. Ongoing support groups usually meet monthly for some time after the program.
In each case there are two small groups – one for people living with memory loss and the other for family members or friends. People with memory loss may attend alone if desired. The groups may meet separately for part or all of the time.
There are many benefits from taking part in a Living with Memory Loss program. Most people enjoy the chance to obtain information, have questions answered, talk confidentially with others in a similar situation, discuss experiences and express feelings in a safe environment.
“It’s good to know there are others in the same boat.”
“Sharing experiences halves my worries and concerns.”
“At this group you’re not a dot on the landscape. You can talk to other people who understand you.”
The program has a positive focus on maintaining and enhancing skill and abilities and exploring ways of managing now and in the future.
For more information about the Living with Memory Loss program call the National Dementia Helpline on 1800 100 500.
Resources
More and more people with dementia are sharing their experiences of being diagnosed with dementia and of living with memory loss. Alzheimer’s Australia in your State or Territory will be able to help you find books or videos of these, as well as resources about dementia and how to manage with the condition.
Contact the National Dementia Helpline on 1800 100 500 for more information.
Last Reviewed: 01 July 2005
