Primary progressive aphasia - Diagnosis and treatment (2024)

Diagnosis

To diagnose primary progressive aphasia, a neurologist or speech and language pathologist will likely review your symptoms and order tests.

Communication problems that get worse without significant changes in thinking and behavior for a year or two is a hallmark of primary progressive aphasia.

Neurological exam

Health care providers might conduct a neurological exam, a speech-language evaluation and a neuropsychological evaluation. Tests will measure your speech, language comprehension and skills. They'll also measure your recognition and naming of objects, recall, and other factors.

Blood tests

Your health care provider might order blood tests to check for infections or look for other medical conditions. Genetic tests can determine if you have genetic changes associated with primary progressive aphasia or other neurological conditions.

Brain scans

A brain MRI can help diagnose primary progressive aphasia. The test can detect shrinking of specific areas of the brain. MRI scans also can detect strokes, tumors or other conditions that affect brain function.

You also might get a positron emission tomography (PET) scan, which shows brain function. This test can uncover problems with glucose metabolism in the areas of the brain that are related to language.

Treatment

Primary progressive aphasia can't be cured, and there are no medicines to treat it. However, some therapies might help improve or maintain your ability to communicate and manage your condition.

Speech and language therapy

Working with a speech-language pathologist, focusing primarily on ways to make up for lost language skills, can be helpful. Although speech and language therapy can't stop the progression of the condition, it can help you manage your condition. The therapy also may slow the progression of some symptoms.

Physical and occupational therapy

In cases where symptoms affect movement and balance, working with a physical therapist and occupational therapist can help manage the symptoms.

Coping and support

Losing the ability to communicate can be stressful and frustrating. This is true for the person with primary progressive aphasia and friends and family. If you're a caregiver of someone with primary progressive aphasia, taking these steps can help everyone cope:

• Learn all you can about the condition.
• Have the person with the condition carry an identification card and other materials that can help explain the syndrome to others.
• Give the person time to talk.
• Speak slowly in simple, adult sentences and listen carefully.
• Take care of your personal needs. Get enough rest and make time for social activities.

Family members eventually may need to make long-term care choices for the person with primary progressive aphasia. They also may need to plan the person's finances and help make legal decisions to prepare for more-serious stages of the condition. Start this process early so the person with primary progressive aphasia can be involved.

Support groups may be offered for caregivers and people with primary progressive aphasia or related conditions. Ask your social worker or other members of your treatment team about community resources or support groups.

Preparing for your appointment

If you're experiencing symptoms, you might start by seeing your primary care provider. Your provider may refer you to a doctor trained in brain and nervous system conditions, known as a neurologist, or a speech-language pathologist.

What you can do

When you make the appointment, ask if there's anything you need to do in advance, such as fasting before having a specific test. Make a list of:

• Your symptoms, including any that seem unrelated to the reason for your appointment.
• Key personal information, including major stresses, recent life changes and family medical history.
• All medicines, vitamins and supplements you take, including doses.
• Questions to ask your health care provider.

Take a family member or friend along, if possible. This person can help with communication and to remember the information you receive.

For primary progressive aphasia, some questions to ask your health care provider include:

• What's likely causing my symptoms?
• What tests do I need?
• Is my condition likely temporary or chronic?
• What's the best course of action?
• Are there other choices to the primary approach you're suggesting?
• I have other health conditions. How can I best manage them together?
• Are there restrictions I need to follow?
• Should I see a specialist?
• Are there brochures or other printed material I can have? What websites do you recommend?
• Should I consider genetic testing?
• What is going to happen to me over time?

Don't hesitate to ask other questions.

What to expect from your doctor

What happens during your appointment will vary depending on the type of health care provider you see. Your health care provider may ask:

• When did your symptoms begin?
• Have your symptoms been continuous or occasional?
• How bad are your symptoms?
• What, if anything, seems to improve your symptoms?
• What, if anything, appears to make your symptoms worse?
• Have your symptoms gotten worse since they started? Have new symptoms emerged?
• Have other family members had similar problems?