Without the support of participants, the Indiana Alzheimer's Disease Research Center would be unable to produce the research results it has for the past thirty years. From early-onset Alzheimer's disease studies to projects focusing on caregiver health, the center offers countless opportunities for community members to get involved in current dementia research. As individuals determine whether or not participation is the right thing for them and their support system, the center provides answers to common questions on what to expect during a potential visit.
What to expect
Expert faculty and staff provide guidance and reassurance during all visits to the IADRC, enabling a strong bond and trust between participant and physician. Whether an individual receives a scan, medication or follow-up testing, communication and transparency remain at the forefront throughout the duration of participation.
Visits vary in length but are usually between two and three hours for in-person visits. Also, number of visits per year varies depending on the study components the subject elects to participate in—usually between one and four visits per year. Some visits may be conducted over the phone.
What can I expect during the examination by a neurologist?
In addition to a physical exam, the neurological examination checks eye movements, vision, hearing, muscle strength, reflexes and sensation. Participants will be asked questions about family history, medical history, medications and social history. Participants will also be prompted with questions for an assessment of cognition and memory.
What can I expect if I choose to participate in sensory testing?
Sensory testing researches how changes in sensory function (vision, smell and hearing) are associated with brain changes in aging, dementia and other neurodegenerative diseases.
Smell: scratch and sniff test, testing with a machine for smell identification and smell memory.
Hearing: three hearing tests to examine comprehension, auditory working memory and speech perception (Utilizes Pure Tone Audiometry (PTA) is the standard hearing test).
What can I expect if I choose to have an MRI?
Functional MRI imaging will allow researchers to visualize which parts of the brain become active while the participant is performing memory, language or other activities in the MRI scanner. The participant will lay flat on a special platform which is part of the MRI scanner. The platform rolls into the machine which forms a dome around the participant to allow the machine to scan the participant’s brain.
The imager makes a loud banging noise while it is taking pictures. The participant will be given earplugs and, as necessary, headphones to dampen the noise so that they can be more comfortable during the procedure.
A special “helmet-like” head holder is used to keep the head still during the scan.
The participant wears a pulse oximeter on their finger and a belt around their chest to monitor respiratory rate.
What can I expect if I choose to participate in a PET scan?
PET appointments last approximately two hours including a one hour wait period after tracer has been injected for it to show up appropriately in the brain. During the one hour wait, you will be seated in a waiting room.
Radioactive tracer liquid will be administered through a vein via intravenous solution.
How it works: the tracer contains glucose which is metabolized (used) by cells in the brain. By detecting radioactive glucose, the PET scan detects which areas of the brain are utilizing glucose and at what rates.
What can I expect if I choose to participate in a lumbar puncture?
The lumbar puncture visit is entirely outpatient and takes approximately one hour. The participant is asked to lay flat for 30 minutes after the procedure itself is done.
What can I expect if I participate in cognitive/ memory testing?
Testing takes approximately one to one-and-a-half hours and involves researchers asking questions to assess the participant’s memory and thinking.
What can I expect during a blood test?
Either a regular blood draw or a fasting blood draw (meaning no liquids or solids other than water for six to eight hours before the blood draw) may be required depending upon the study. The participant will be informed if they need to fast for the blood draw.
Tests may be done on the sample, such as for CBC, vitamin levels, metabolic levels (including glucose to test for diabetes), extraction of nucleic acids, white blood cells, plasma, serum and grow cell lines, to obtain information necessary for the study.
What will it cost me to participate in a study?
There is no cost for participating in center studies.
What are the benefits to participating in Alzheimer's disease research?
While there may not be a direct benefit to participating in a study, the information collected during a visit may be beneficial to improving society's understanding of the causes and changes associated with aging and Alzheimer's disease. Individual study participants can receive annual examination and neurocognitive testing, connection to dementia and Alzheimer's disease clinic, and have the opportunity to potentially participate in additional research projects or drug trials.
For the first time, the United States is able to witness one of the first generations of publicly “out” LGBTQ+ elders. For decades, these individuals have experienced insurmountable stigma and hindrances in receiving fundamental rights. Many grew up before Stonewall or when it was still considered illegal to be gay. Some were activists in large cities as others lived quietly in small, rural towns; however, the amount of prejudice they all witnessed can still be felt rippling through time, not least of which when accessing care