Introduction

In May 2001 the US Alzheimer's Association commissioned a survey about doctor-caregiver communications. Only a third of the caregivers who were asked (124 out of 376, or 33%) felt they received all the information they wanted from their family physicians. But 440 of 500 physicians (88%) who answered the survey believed they were providing the proper recommendations about management. Clearly something is not right with doctor-caregiver communications. Here are some tips for caregivers and family members in their effort to 'educate' their physicians. They are taken from a booklet put out by the California Council of the Alzheimer's Association (see first link below).

Before your first visit

Doctors only have a limited amount of time to spend with each patient. You can help by being prepared. Make lists!

• Make a list of all medications, both over-the-counter (vitamins, aspirin) and prescription, with their dosing instructions.
• Make a list of previous and present medical problems, and any relevant problems in family members.
• Make a list of symptoms, when they began, and how often they occur. Be specific - e.g. "Last Tuesday, my husband got lost on the way home from the store. It was scary."
• Be ready to say how well the patient can perform common daily activities, such as balancing a checkbook or taking medications.

At your first (or maybe your second) visit, your doctor should:

• Explain the diagnosis, let you know what to expect in the future, and tell you where to get more information and support.
• Tell you about possible treatments, and help you select what's best.
• Schedule your next visit and let you know how often you should come back.

If you aren't getting the information you expect, ask these specific questions:

• What does the diagnosis mean?
• Can you explain it in a way that I will understand?
• What can we expect in the near future and over time?
• Do you have any written material on this disease? If not, who does?
• Are there any organizations or community services that can help?
• Are there any treatments that don't involve medications?
• Is there anything that we can change at home to make things easier or safer?
• What medications are available for memory loss or for behavior changes?
• What are the risks and benefits of the medication?
• What are the side effects?
• How long will the patient take this medicine?
• Should we consider participating in a drug trial?
• What are the risks and benefits?
• Under what circumstances should we call your office?
• Is there anything else we should know?

Don't worry if you get home and realize you've forgotten to ask some of your questions. Make another list and call the doctor, or take them on your next visit.

For subsequent visits

Make a list of:

• Changes in symptoms (memory, mood, behavior). When they started, frequency, time of day.
• How the prescribed treatments are working. What's improved, what's worsened.
• Side effects of medications and the problems they cause.
• The patient's general health.
• The caregiver's health.
• What additional help you need.

If you don't understand something, ask more questions. Share your point of view with the doctor. Gather Information - take notes during the visit or afterwards, even bring a tape recorder.

There are many challenges in dealing with Alzheimer's. Working together with your doctor can help you get the best care possible.