During the process of having an assessment of memory loss or cognitive changes and determining a diagnosis, it is likely that you will have contact with medical specialists. In the longer term though, it is the family doctor who is usually the health professional providing on-going health care. This means that your doctor’s relationship with you and your family is critical.
Your family members or others close to you are also likely to have involvement.
Where to begin
A useful way to think about working with doctors is to regard yourself, your doctor and your family as part of a team aiming to provide you with the best possible care. Doctors cannot talk about their patients without their consent. If you tell the doctor that no information is to be given to relatives, the doctor must abide by this. However most people want to talk about their condition with someone close to them. Talking to the doctor together is generally the best way to do this.
A good doctor for you and your family:
- Is a ready source of advice and support
- Listens to you and your opinions
- Explains things in words you can understand
- Takes time to answer your questions
- Makes you feel comfortable
- Respects you, as well as your family members.
What to try
Communicating
Communication is a two way process. You need to let the doctor know what it is you want. If you don’t understand what is being said, ask to have it explained in a different way. You should be able to talk freely to any doctor and be assured that all discussions are confidential.
Getting the information you need
Some people find it helpful to make a list of questions to ask the doctor. Take notes of what the doctor is saying, or ask the doctor to write it down so that you can look at it later. Consider taking someone with you who can assist with asking the questions or write down the answers.
Keeping track
Many people find it helpful to keep a folder or notes about their conversations with doctors and others, recording who they spoke to, and when. Sometimes it can feel as if you have spoken to so many people that you can’t remember the details of what was discussed with whom.
Making time
Make an appointment at a suitable time of the day. If the early morning or late afternoon is a difficult time for you, avoid these times for appointments. Ask for a longer appointment if you feel you need it.
Speaking up for yourself
Sometimes it isn’t easy to get the information you need. Be prepared to look around until you find a doctor who meets your needs. Talking to other people about their experiences with doctors can help.
Referrals
Most doctors refer to a range of specialists they use regularly and have close contact with. However you can ask for a referral to the specialist of your choice if you wish., or in some states, a memory clinic or Cognitive Dementia and Memory Service. You can also ask to be referred back to a specialist if you feel your circumstances have changed.
Special needs
There are many doctors and their staff who speak different languages and understand different cultures. Contact the Australian Medical Association in your State or Territory for information about doctors who may be able to help.
Your rights
It is important to help your doctor understand your experience of dementia. However you have the right to change doctors if you feel your doctor is not meeting your needs.
Further Help
The Living With Dementia Series is available in each State and Territory. These groups are specifically designed for people in the early stages of dementia as well as their family member or support person. People living with dementia can also attend on their own. Programs run in metropolitan and regional areas at no charge to the participants.
There are many benefits from taking part in a Living With Dementia Series. 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 Dementia Series call the National Dementia Helpline on 1800 100 500.