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Getting the Right Care

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By Report by the Agency for Hlth Care Pol & Research • • September 1, 1996

When the diagnosis is Alzheimer's disease, you and your family members have serious issues to consider. Talk with your doctor about what to expect in the near future and later on, as your condition progresses. Getting help early will help ensure that you get the care that is best for you.
When tests do not indicate Alzheimer's disease, but your symptoms continue or worsen, check back with your doctor. More tests may be needed. If you still have concerns, even though your doctor says you do not have Alzheimer's disease, you may want to get a second opinion.
Whatever the diagnosis, followup is important.
Report any changes in your symptoms. Ask the doctor what followup is right for you. Your doctor should keep the results of the first round of tests for later use. After treatment of other health problems, new tests may show a change in your condition.
Recognizing Alzheimer's disease in its early stages, when treatment may relieve mild symptoms, gives you time to adjust. During this time, you and your family can make financial, legal, and medical plans for the future.
Coordinating Care
Your health care team may include your family doctor and medical specialists such as psychiatrists or neurologists, psychologists, therapists, nurses, social workers, and counselors. They can work together to help you understand your condition, suggest memory aids, and tell you and your family about ways you can stay independent as long as possible.
Talk with your doctors about activities that could be dangerous for you or others, such as driving or cooking. Explore different ways to do things.
Telling Family and Friends
Ask your doctor for help in telling people who need to know that you have Alzheimer's disease members of your family, friends, and coworkers, for example.
Alzheimer's disease is stressful for you and your family. You and your caregiver will need support from others. Working together eases the stress on everyone.

Where To Get Help?
Learning that you have Alzheimer's disease can be very hard to deal with. It is important to share your feelings with family and friends.
Many kinds of help are available for persons with Alzheimer's disease, their families, and caregivers. This help includes:
? Support groups. Sometimes it helps to talk things over with other people and families who are coping with Alzheimer's disease. Families and friends of people with Alzheimer's disease have formed support groups. The Alzheimer's Association has active groups across the country. Many hospitals also sponsor education programs and support groups to help patients and families.
? Financial and medical planning. Time to plan can be a major benefit of identifying Alzheimer's disease early. You and your family will need to decide where you will live and who will provide help and care when you need them.
? Legal matters. It is also important to think about certain legal matters. An attorney can give you legal advice and help you and your family make plans for the future. A special document called an advance directive lets others know what you would like them to do if you become unable to think clearly or speak for yourself.

Source: Agency for Health Care Policy and Research(AHCPR)
Publication No. 96-0704
Clinical Practice Guideline, Number 19, Consumer Version
September 1996

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