Why should I talk to my doctor about Alzheimer’s disease?

There are many reasons to talk to a doctor about Alzheimer’s disease. Whether you are concerned about your own cognitive symptoms, you suspect a relative may be showing signs of the disease, or you are just interested in finding out ways to reduce your disease risk, talking to a doctor can help. You can learn about ways to reduce your risk and about how to determine when it is appropriate for you or a relative to be screened for dementia.

Making an appointment and consulting with a doctor can be very helpful if you have concerns about memory loss or behavioral changes that you are experiencing yourself or that you have noticed in a loved one. In many cases, the cognitive declines you noticed may be normal signs of aging and a visit to the doctor can allay your fears. In other cases, the doctor may recommend further testing which might determine that the symptoms are caused by something that is easily treatable. Of course, it may turn out that you or your loved one has dementia caused by Alzheimer’s disease.

You may be thinking: Why would I want to find out that I (or my loved one) have Alzheimer’s disease if there is no cure? Even though no cure exists now, an early diagnosis has many advantages. It gives the patient more time to make choices that can optimize their quality of life in the remaining years. An early diagnosis can also help relieve some of the anxiety about what to expect in the future. For a patient, knowing that they have the disease can provide a helpful framework for understanding symptoms and make them seem less mysterious and frightening. The patient can also seek out resources and support that are specific for people with Alzheimer’s disease. Organizations like the Alzheimer’s Association have local chapters in most areas and other community organizations can offer information, care, and support services for those living with Alzheimer’s and for the people caring for them.

There are treatments and services that can make life better for anyone living with Alzheimer’s. Studies indicate that the earlier a person is diagnosed with the disease, the more effective drug treatment tends to be. Since these treatments can help delay the cognitive declines of Alzheimer’s disease, starting them early postpones the time when the patient will become unable to take care of themselves.

Early diagnosis may also provide the opportunity to participate in clinical trials of experimental drugs or other new treatments. Hundreds of clinical studies are currently underway, testing new medications and novel approaches for care and support (see: “Information about clinical trials”). The earlier a diagnosis is obtained, the more likely a patient will be able to participate in one of these trials.

An early diagnosis can also give a person more time to make plans for the future and get their affairs in order before the inevitable cognitive declines make this impossible. Alzheimer’s disease patients may need to make medical, financial, and legal arrangements in preparation for a time when they will no longer be capable of dealing with these issues. Eventually, they may need to make different living arrangements for themselves. Early diagnosis enables a patient to think about their preferences and help make these decisions for themselves, instead of having them made by other people.

Another reason that is important to see a doctor if you or a loved one is experiencing dementia-like symptoms is that only a doctor can determine what is causing those symptoms. There are many things that can cause dementia-like symptoms besides Alzheimer’s disease and some of these are easily treatable - such as medication side effects, depression, vitamin deficiencies, or thyroid problems. Staying away from the doctor for fear of an Alzheimer’s diagnosis prevents a person from getting the help needed to correct these problems.

How do I talk to my doctor about Alzheimer’s disease?

As with any medical matter, the best thing you can do is to be prepared. Bring a list of the questions you want to ask and come prepared to answer the questions that the doctor may ask of you. If you are taking medications you can bring a list of those as well (including both prescription and non-prescription drugs). You may be asked to provide a medical history, including any past illnesses, surgeries, and treatments (including mental health treatment) so knowing the dates of these is helpful. You will probably be asked about your family history of Alzheimer’s disease and other types of dementia so be prepared to answer these questions. Especially if you have been experiencing recent memory problems, you should write down all this information and bring it with you to the appointment. If you are accompanying a loved one to the doctor, you can take charge of this information and help them answer questions when necessary.

If you have been experiencing symptoms, tell your doctor what they are, when they began, how often they happen, and whether they are getting better, worse, or staying the same. Keeping a journal of your symptoms will help you keep track of them and help you talk about them with your doctor.

When your doctor asks you questions about your lifestyle, you should answer them truthfully. Sometimes people are embarrassed to admit that they smoke, or drink, or eat fast food, but your doctor needs to know these things to help you. Most doctors will not judge you; just taking the initiative to come and see them shows that you are interested in taking control of your health and that is commendable.

It is a good idea to take notes, bring a tape recorder, or ask a friend or family member to come with you to help you remember any information the doctor gives you. Medical information can be overwhelming, especially when you are faced with a lot of it all at once. This is only made worse if you are having difficulty with your memory.

Make sure you understand any diagnoses the doctor gives you and any tests ordered or treatments prescribed. Ask your doctor to explain if he or she says something that you do not understand. Speak up. Let your doctor know if he or she has not answered your question or addressed your concern. Tell your doctor if a treatment is not working or if you are having side effects. He or she may prescribe a different treatment that might work better for you.

If you are asked to come back for further tests or to consult with the doctor about test results, you may want to bring someone along for support. Receiving a diagnosis of a progressive terminal disease like Alzheimer’s is not easy and having someone there to support you can help. It is also important to have someone with if you are asked to make major decisions about medical matters.

What questions will the doctor ask me to help determine if I have Alzheimer’s disease?

In addition to a routine medical history, the doctor may ask questions about your risk factors for Alzheimer’s disease and your recent symptom history. You should come prepared to answer the following questions about your risk factors for the disease:

• Do you have any relatives with Alzheimer’s disease? With other forms of dementia?
• Have you ever been treated for depression? Do you have any relatives with depression?
• Have you ever had a head injury? If so, when and how serious was it?
• Do you have diabetes? Do any of your family members?
• How often do you engage in physical activity?
• What is your level of social engagement? Do you spend a lot of time with friends and relatives?
• What is your education level?
• Do you have high cholesterol or high blood pressure?
• How is your heart health?

You should also be prepared to answer questions about your symptoms such as those that follow:

• What kind of symptoms have you noticed?
• When did they begin?
• How often do they happen?
• How bothersome are they?
• Have they gotten worse?

Because there are many causes of dementia-like symptoms that are treatable, it is important that a doctor rule these out as possibilities before diagnosing Alzheimer’s disease. Drug side effects are the most common cause of treatable symptoms, especially those caused by combining medications. The doctor may ask about the following to determine if one of them may be causing symptoms similar to Alzheimer’s:

• What medications are you taking (including over-the-counter drugs)?
• Do you drink alcohol? How much and how often?
• Have you ever had cancer or any type of tumors?
• Have you been diagnosed with problems of the heart, lungs, or blood vessels?
• Have you ever had a metabolic disorder (such as thyroid problems)?
• Have you had a recent head injury?
• Did you have any type of infection recently, including the flu or a bladder infection?
• Have you been experiencing any vision or hearing problems?

Especially if you are showing obvious symptoms of Alzheimer’s, the doctor may also ask you questions about your ability perform the normal activities of daily living. In some cases, a family member or close friend may be asked how well you can (as suggested by the U.S. Agency for Healthcare Research and Quality):

• Write checks, pay bills, or balance a checkbook.
• Shop for clothing, food, and household needs.
• Heat water, make coffee, and turn off stove.
• Pay attention to, understand, and discuss a TV show, book, or magazine.
• Remember appointments, family occasions, holidays, and medications.
• Travel out of the neighborhood, drive, or use public transportation.

What questions should I ask my doctor about Alzheimer’s disease?

If you have not been diagnosed with Alzheimer’s disease and are not currently experiencing symptoms, you can ask your physician questions about your Alzheimer’s disease risk and what you can do to lower your risk.

• What is my risk for Alzheimer’s disease?
• What is my cholesterol level?
• What is my blood pressure? Is it too high?
• What is my body mass index or BMI? Do I need to lose weight?
• How much physical activity do I need to do to help lower my Alzheimer’s disease risk?
• What can I do to lower my risk of developing Alzheimer’s disease?

If you or a loved one is experiencing symptoms of Alzheimer’s disease there are questions you can ask the doctor about the diagnosis processes:

• What tests need to be done to accurately diagnose Alzheimer’s?
• What does each test involve?
• How long will the tests take?
• How long will it take to learn the results?
• Should I undergo brain imaging?
• What happens if the tests conclude that it is Alzheimer’s disease?
• How certain can you be of an Alzheimer’s disease diagnosis?
• What are the next steps?

What questions should I ask my doctor if I (or a loved one) am/are diagnosed with Alzheimer’s disease?

If you or a loved one is/are diagnosed with Alzheimer’s disease there are questions you can ask your doctor about the disease prognosis and about techniques for managing the disease. The questions below are phrased as “I” questions but you can also ask these same questions about the diagnosis of a loved one.

• Do I really have Alzheimer’s or could it be some other condition or disorder?
• How confident are you about the diagnosis?
• Have you ruled out other causes of my symptoms? Other causes of dementia?
• Would you call my current symptoms mild, moderate, or severe? What does that mean?
• How can I expect my symptoms to change over time? What changes can I expect next?
• How can my family and I prepare for these changes?
• Must it necessarily become progressively worse or can deterioration be halted?
• What physical symptoms should I anticipate?
• What can I do to preserve my health and mental abilities for as long as possible?
• Are there things I can do to improve my motor skills?
• Is there a special diet that may help?
• Can lifestyle changes help my disease?
• What level of activity is OK for me? Are there specific exercises I should do? Are there activities I should avoid?
• Are there supplements or alternative treatments that can help with symptoms? What about vitamin E or Ginkgo biloba?
• What are the key differences among the Alzheimer’s disease treatments available today?
• What are the potential benefits and risks of treatment versus non-treatment?
• What medicines are available for treating Alzheimer’s disease? Which do you recommend for me and why?
• Can Alzheimer’s disease medication help slow the cognitive declines?
• Will I always need to take medications?
• How long will I remain able to care for myself?
• What kinds of preparations should I make for the future - economically, legally, and medically?
• How can I explain my condition to others?
• How often should I see the doctor to best manage my Alzheimer’s disease?
• Should I consider joining a clinical trial for Alzheimer’s treatment?
• What else can I do to help manage my Alzheimer’s disease?
• How can my family get help to cope with this disease?
• Do you know of any Alzheimer’s disease support groups in the area?
• What can I do to make things easier on my family?

What questions should I ask my doctor about Alzheimer’s disease medications?

These are some questions you can ask about any Alzheimer’s disease medications your doctor prescribes to you or your loved one. You should make sure to ask these questions about each medication prescribed. Write down or record the answers to them so you do not forget any of this important information.

• When and how should I take the medication? For how long?
• Is this medication safe when taken with my other prescribed medications?
• Are there other instructions that I’ll need to remember, such as taking it with or without food?
• Are there foods or activities I should avoid when taking the medicine?
• How does the medicine work?
• Are there other, similar medications in the same class that work in a similar way?
• What should I do if I forget to take a dose?
• What side effects should I watch out for?
• What are the signs of a dangerous reaction or side effect? When should I notify you of possible adverse effect?
• How will I know if the medicine is working?
• What improvements can I expect to see, and how long will it take?
• Are there any long term risks of taking this medication?
• Where can I find out more about the medicine?
• How much does each medication cost? Will my insurance cover them? Are there less expensive generic versions available?

What questions should I ask the doctor if I or a loved one has already been diagnosed with Alzheimer’s disease?

If you or a loved one has have already been diagnosed with Alzheimer’s disease, you should visit the doctor at regular intervals to help monitor the progress of the disease. There are questions you can ask the doctor at each visit about the progress of the disease, how the medications are working and what, if any, activities you or the patient should consider curtailing. These questions are written from the point of view of the caregiver, because eventually the caregiver will have to be the one asking them of the doctor. At each visit you can ask:

• How would you categorize his/her current symptoms today: mild, moderate, or severe?
• How do their symptoms compare to the last time we were here?
• How can I expect the symptoms to change between now and our next visit?
• Should we consider changing medications or doses at this time?
• How will I know when I should contact you again about his/her Alzheimer’s disease medication?
• Are there activities that he/she should stop doing like driving or walking alone?
• How can I manage the behavioral problems he/she is having?
• What can I do to help the patient sleep better?
• When should we consider around-the-clock care or institutionalization?
• Is there anything else that I should be doing for him/her or for myself?
• When should we come back to see you?