The Path to an Alzheimer's Disease Diagnosis

Quick summary

If your parent has started to show signs of dementia or possible Alzheimer's disease, you may feel overwhelmed and unable to figure out what to do about it. Your most important priority is to get a diagnosis. The earlier you can put a name to the problem, the easier it is to organize a care plan.

Six steps to a diagnosis of Alzheimer's disease

There's no single test for Alzheimer's disease. In fact, a definitive diagnosis can only be made after death, by examining brain tissue for telltale changes. But doctors can make a probable diagnosis of Alzheimer's with as much as 90 percent certainty. Start here:

1. Create a record

It's almost always family members, more than physicians, who spot the first signs of Alzheimer's disease. Start by writing down observations that you and others make of your parent. You'll be better able to notice patterns or changes in the frequency of certain behaviors than if you keep a mental record. This evidence is incredibly useful when you speak with medical professionals and may even help when discussing the topic with family and friends.

This same notebook can also serve as your "playbook" throughout your parent's journey, a central source of all the information that will be needed not only to make a diagnosis but to formulate an ongoing care plan. Having all the information you need in one place can be a valuable shortcut for large families.

What to record:

• Your parent's general medical history: her current and past medical problems and conditions
• Current medications and their dosages
• Other family members' histories of illnesses (including Alzheimer's disease and other types of dementia)
• Contact information for doctors and pharmacists
• A record of who has been consulted and when
• Symptoms.

Part of the determination about her condition will have to do with how much she's changed or how much you think she's not "acting like herself." Be sure to note when you first noticed a particular change in behavior, physical ability, or mental ability (or about how long the change has been occurring); how frequently it occurs; if it has worsened; and how different or "abnormal" it is for your parent.

• Other observations.

Try to include as much information as you can about your parent's condition -- not just things that you think are typically associated with Alzheimer's. Other medical issues or unexpected changes (such as falling or incontinence) can be related to the disease.

2. Educate yourself

As soon as you suspect Alzheimer's, invest a little time in getting more familiar with the disease. There are lots of myths about it and plenty of confusion. Having a basic understanding allows you to ask doctors more informed questions and recognize the signs to watch out for.

• Try not to jump to conclusions. Various types of dementia, as well as other illnesses or situations, may result in changes that mimic signs or symptoms of Alzheimer's disease (such as disorientation and mood swings or personality changes), so you'll need to consult with a qualified physician before determining that it's Alzheimer's. An early diagnosis means that the right medications and lifestyle changes can be made to slow the disease's progress and help preserve your parent's independence as long as is practical.
• Take the Alzheimer's Association's Brain Tour and learn how the brain works and how Alzheimer's affects it.

3. Find and talk with a qualified doctor

With the observations you've made of your parent and a basic foundation of knowledge about Alzheimer's, you're ready to consult with a medical professional.

• Start with her regular primary care doctor. This professional is optimal because he's observed your parent over time. But if your parent's doctor doesn't seem particularly knowledgeable about dementia or doesn't seem to be taking your concerns seriously, it's probably time to look for a more appropriate choice, ideally someone with experience in treating dementia. Contact your local Alzheimer's Association chapter, Alzheimer's Disease Center, other Alzheimer's program, or hospital referral system. A geriatrician (a physician who specializes in treating older adults) may be especially helpful.
• Accompany your parent. Even if you don't have a history of attending your parent's medical appointments, try to arrange to be at this one: "I've been worried about you. Let's make sure everything is all right or see if the doctor can help with that memory problem. I'll come with you because you know they now say it's a good idea for more than one adult to be at all kinds of medical appointments. That way, between the two of us, we'll keep track of everything the doctor says."
• Be prepared for the appointment. Bring your notebook of observations, including a list of the medications your parent is currently taking, and a list of questions you'd like to ask, as well as her medical history if it's a new doctor. Be sure to include a request for referrals to specialists (if necessary) in your list of questions.
• Arrange for some assistance. If you live far away and can't be with your parent for the appointment, try to make sure someone you and she both trust accompanies her. Ask your parent to sign a release permitting you to discuss her medical records and care with her doctor so you can call directly with follow-up questions after the intermediary gives you a report.

4. Get a thorough medical workup

Your parent's doctor will use evidence from a careful exam and a process of elimination to arrive at a diagnosis. A combination of diagnostic tools enables him to screen for conditions that may be affecting your parent. Here's a quick breakdown:

• A medical history. The doctor will ask your parent a series of questions about medical conditions and illnesses she has had in the past, any current medical symptoms or medications, and information about other family members' health. He may ask about other topics as well, such as diet and exercise.
• A physical exam. As in a regular checkup, the doctor will check your parent's vital signs -- blood pressure, pulse, and temperature. He'll also listen to her heart and lungs and check other physical characteristics.
• Diagnostic tests. The doctor will order urine and blood tests to check for certain infections or disorders that may be causing symptoms. Blood testing may be used to search for genes known to make Alzheimer's more likely.
• A mental status assessment. Your parent will be asked to answer a series of questions and perform some activities in order to evaluate memory loss, disorientation, trouble with following directions or completing basic tasks, problem-solving ability, communication skills, and her level of awareness of the problems she experiences. The doctor may also ask questions to assess for depression, anxiety, and other possible psychiatric problems.
• A neurological or neuropsychological evaluation. The doctor may test your parent's physical coordination, reflexes, balance, and speech, among other indicators of her neurological health.
• A brain scan. It's likely the doctor will order either a CT (computer tomography) scan or MRI (magnetic resonance imaging) scan to visually examine the condition of your parent's brain, including possible damage due to Alzheimer's disease, trauma, or strokes.
• Other tests. The doctor may also order other tests or scans, such as a spinal tap, a chest X-ray, an electroencephalogram (EEG, to examine brain function by the electrical activity it generates), or a positron emission tomography scan (a PET scan, to examine the function of internal organs).

5. See a specialist

When Alzheimer's disease is suspected or diagnosed, your parent's doctor may recommend that she next see a specialist, such as a neurologist, psychiatrist, or geriatrician. This specialist will help confirm the primary diagnosis and advise you on Alzheimer's care. He can also answer specific questions you may have about disease, its treatment, and care giving, and he may be able to direct you to other helpful resources and support groups.

6. Consider a second opinion

It's often advisable to seek a second opinion about your parent's condition (whether the diagnosis is probable Alzheimer's or not), especially if you or your parent's doctor is uncertain about it. Another experienced, skilled physician can review the findings of the tests and evaluations your parent has already undergone.

After the diagnosis: What lies ahead

• Assemble a team. If the diagnosis is probable Alzheimer's, the next step is to start putting together an Alzheimer's care team. Alzheimer's care works best when it's a shared responsibility -- and when good resources and sources of support are available to the primary caregiver.
• Don't forget your own concerns. In addition to powwowing with your family about options for your parent's care, be sure to start thinking about support for yourself (or the person who will be the primary caregiver). Financial, emotional, and physical stresses often build over time.

There's no single timetable for how the disease progresses, and your parent may have many satisfying years ahead. Do what you can to ameliorate the symptoms she experiences so that you can prolong her independence and dignity.