What to Expect at the Doctor’s Office
Who Does What at the Clinic
Your doctor has a team to help him/her take care of patients. All of these players have different roles, and it’s good to know how each of them can help you. Not all are assigned to your family automatically, so you may have to ask for specific assistance:
- Orders tests, translates the results of those tests, makes decisions about medication dosage, activates the other members of the team, writes official letters to help your parents with the bank, customs officials, the police, employers, or school administration.
- Consider requesting a letter/email from the physician that you may carry when you are with your loved one in public to avoid legal or social problems that might arise from his or her behavior.
- The doctor should see the patient every couple of months if progression is very rapid or unexpected changes occur, but may wait as long as 9 months between visits if things are changing more slowly.
- The doctors who specialize in FTD are neurologists, particularly behavioural neurologists, or psychiatrists, who may be geriatric psychiatrists or neuropsychiatrists.
- May act as the central place to get new information from the family (you!) about how the patient is doing so that s/he can prompt the doctor to order other tests, change the medication, or activate the other team members to help you.
- Social Worker
- Knows how to help your parents with financial and legal matters. If there is difficulty choosing the main decision-maker for the patient, the social worker gets the family to meet, and helps you figure that out. Also knows about how to engage help to come to your home to care for the patient whilethe rest of the family vacations, and how to choose a nursing home if the patient needs to be transferred out of the house. The social worker often leads family meetings attended by you, your family, the doctor, the nurse, and the rest of the team. The patient usually does NOT attend those meetings so that you can speak freely about your concerns.
- Speech and Language Pathologist
- Swallowing: Patients may develop irreversible difficulty with swallowing. The speech and language pathologist does a few tests to help determine what the patient can still eat safely, and advises the family on how to prepare that food or serve it properly.
- Communication: For patients with language problems (aphasia), this specialist helps maximize remaining abilities and coaches the entire household on better ways to communicate. Sometimes the speech and language pathologist’s opinion finalizes the diagnosis.
- May be called upon to alter disturbing behaviours when you don’t just want to sedate the patient with medications, or if the medications don’t work!
- Is the type of psychologist who tests the patient, sometimes only once, at the beginning, to help make a diagnosis. This person can assist not only with the diagnosis but also in telling the family what strengths the patient still has, and therefore which meaningful activities can be completed. For example, although a patient can’t multi-task anymore, she might be able to do sudoku puzzles when in a quiet, simplified environment.
- Occupational Therapist
- Can be sent to your home to make sure everything is arranged in a way that’s easy and safe for the patient. Examples of changes they suggest include eliminating hazards for falling, or rearranging the kitchen to make it obvious where the patient can go to reheat food in the microwave.
- Deals more with patient mobility issues, like walking safely. Can also help with pain issues.
- Not all doctors’ offices house each of these team members under one roof, but your doctor could still write referrals to these specialists, who often run offices of their own, especially in medium-large cities.
Familiarize Yourself before Your Visit to the Clinic
How your brain thinks is divided up into several domains. We list them here, along with the parts of the brain assigned to each type of work! You’ll see that loss of some or most of the frontal and temporal lobes can really impair these thinking domains, but the rest of the brain and some functions will remain intact, which explains why some patients may seem fairly normal to strangers they pass on the street.
|Thinking Domain||Examples||Brain Region That Manages It|
|Social Judgment/Personality||Whether a person is warm and friendly or cold and indifferent; knowing when to make a comment about a person’s appearance outloud; understanding that someone is crying and wanting to help||Frontal and temporal lobes, toward the center or midline of the brain|
|Multi-tasking||Determining whether it is more important to get into the bathroom to pee or buy groceries; answering the phone while checking email and remembering to write down the phone message for a family member after turning the computer off; cooking a multi-course meal and having it all served on the table at the same time, at the right temperature; knowing whether you’re on-track with an assignment; continuing to work on a project until it has been completed.||Frontal lobes|
|Memory||Knowing your own personal history (when and where you were born, where you went to school); knowing facts you’ve learned (who was the 16th president of the US?)||Temporal lobes mainly, but retrieving info you’ve filed away may be slowed if frontal lobes aren’t working right.|
|Attention||Overlaps with multi-tasking above, because it refers to focusing on the most appropriate thing and keeping that attention trained for the right length of time. If someone has NO attention span, they will not be able to perform well on testing for any of these categories!||Frontal and parietal lobes|
|Calculations||Simple arithmetic as well as long, complex word problems||Parietal lobe|
|Language||Getting the words out; understanding what others are saying or what is read; accessing your own internal dictionary of words you already know||Frontal and temporal lobes|
|Spatial orientation||Drawing (some people were never good at this); knowing where the car was parked at the mall; understanding how to get to the car even if you exit from a different door than you entered the mall; knowing your way around your home||Parietal and occipital lobes|
Your Family’s Privacy
If your family has asked you to avoid sharing with anyone personal information related to your loved one’s illness, yet you are worried about his or her safety or just need to talk to someone, you might want to confide in someone on the medical team. This ensures privacy. No health care professional is allowed to share any information about you without your permission, so everything you say is protected.Your school counselor might be a good option for confidential guidance as well.
If you prefer to talk about your family’s situation with friends, it might help to initiate a discussion with your family first. You may assure them that your friends will respect your family’s privacy, and that you need this support outside the home.
Safety First: Protecting Your Loved One
If a situation gets out of hand and you feel that you and your loved one are in danger, do not hesitate to call the police. When officers arrive, they will likely call an ambulance and provide your loved one with immediate medical attention.
Written by Tiffany Chow, M.D. and Katherine Nichols, based on qualitative research.