Primary Progressive Aphasia (PPA) Clinical Program

Thank you for your interest in the Northwestern Alzheimer’s Disease Center Primary Progressive Aphasia (PPA) Program.

Primary Progressive Aphasia (PPA) is a form of dementia that can occur in individuals under the age of 65, sometimes as early as in the 40’s. "Aphasia" is a deficit in the capacity to use language for communication and it is evident in speaking, undertsanding what others are saying, naming common objects, reading and writing. PPA begins very gradually and is initially experienced as difficulty thinking of common words while speaking or writing. However, there are individual differences and the first symptoms can involve any aspect of language functioning.

The NADC PPA Program is a 2 day, comprehensive, multidisciplinary approach to evaluation, diagnosis, and treatment of Primary Progressive Aphasia. Over the course of the examination, we may determine that PPA is not the correct diagnosis and will make appropriate recommendations in that event. The PPA Program consists of four main components:

• Clinical - State-of-the-art medical evaluation to establish the diagnosis
  
• Research - Voluntary participation in ongoing research studies of PPA
  
• Education - Address individual needs for information/resources
  
• Treatment - Clinical evaluation of the language deficits and a treatment plan

This program is open to individuals seeking a first-time diagnosis or to those with an established diagnosis of PPA seeking a second opinion or ongoing care.

If you decide to enroll in the program, you will receive a packet which will include a schedule, a map of the nearby area, and some forms to complete and bring to your appointment.

For more information about the PPA Program, please contact:

Christina Wieneke
Northwestern Alzheimer's Disease Center
320 East Superior
Searle 11-459
Chicago, IL 60611
P: 312-908-9681
F: 312-908-8789
c-wieneke@northwestern.edu

If you would like to schedule an appointment, or talk with someone about billing or related questions, please contact:

Ms. Jackie Betti
Neurobehavior and Memory Health Services Clinic
675 N. St. Clair, Galter 20-100
Chicago, IL 60611
P: 312-695-9627
F: 312-695-6072

Lodging information

Northwestern Memorial Hospital has staff available to assist you in finding appropriate lodging. Many of these hotels are available to Northwestern patients at a discount. For assistance or more information, please call: (312) 926-7666.

Clinical Evaluation

Neurological Evaluation:

Conducted by a behavioral neurologist (M.D.) who specializes in diagnosis and treatment of cognitive and behavioral disorders due to brain disease. Requires 1 - 2 hours of testing for sensory and motor functions and a brief review of mental functions.

Neuropsychological Evaluation:

Conducted by a clinical neuropsychologist (Ph.D.) who specializes in the objective evaluation and behavioral management of brain disorders. Requires from 2 - 6 hours of tests of language, visual perception, memory, reasoning, and attention. In patients with dementia, this examination may often offer the only evidence of declining abilities due to degenerative brain disease.

Speech Evaluation and Treatment:

Conducted by a licensed speech pathologist. The examination, which lasts 2-3 hours, covers all aspects of speech and language. Based on the results, the speech pathologist will work one-on-one with the patient and family to develop tools for improving communication and compensating for difficulties. Referrals to local therapists are made when necessary.

Social Work Evaluation:

Conducted by a licensed clinical social worker with experience in working with individuals facing the emotional and practical challenges of PPA. Many non-medical issues related to PPA (e.g., reactions of family and friends, coping strategies for caregivers) are addressed. Assessment of the current living situation and recommendations regarding services that may be helpful will be provided.

Feedback:

At the end of the evaluation, you and your family will meet with a member of the clinical team to review the results of the evaluation and recommendations. This session is an opportunity for you to bring up any questions or concerns. You will receive our PPA Family Handbook which contains information and educational materials. The results of the evaluation are contained in reports from the individual providers that can be sent to your health care providers and/or yourself, as requested.

Research Opportunities

Based on your diagnosis during the evaluation (PPA or other), you may be invited to participate in several research studies. Participation is voluntary and will be scheduled to fit within the time of your stay.

Costs

Since this program includes both clinical/medical procedures AND research, it is important that patients and families understand the costs entailed. There is no cost for any research-related activities--that is, for any procedures carried out solely for the purpose of research and with no direct clinical application or benefit to you.

There are customary charges for all evaluation procedures directed at examining your symptoms for the purpose of arriving at a diagnosis and making appropriate treatment recommendations. These are listed below:

Neurological Evaluation: Initial examination ranges from $250 - $453. If you return at six-month intervals to be followed in our clinic, these costs can range from $85 - $200.

Neuropsychological Evaluation: This examination is billed at an hourly rate. Estimated total can range from $1300 - $3000, although individual costs can vary based on availability of prior examinations and the patient's current level of functioning.

Speech Evaluation and Treatment: The cost of this evaluation and treatment session is $500.

PLEASE NOTE: It is essential to check with your insurance provider to determine coverage for all these procedures, as insurance verification is the responsibility of the patient.