Telemedicine and LBD

Lewy body dementia (LBD) experts at LBDA’s Research Centers of Excellence (RCOE) have been using creative workarounds to keep research, clinical care, professional education, and community support activities underway throughout the pandemic. Today, we would like to share more information about telemedicine and LBD.

Types of Telemedicine

Telephone Call

You might contact your doctor by a simple phone call. If you choose this type of telemedicine, confirm the date and time so you know when to be near the phone. Keep in mind that the incoming call might show up as a blocked or 800 number. So, if you get a call at the allotted time, answer it, even if you do not recognize the number.

Online Health Portal or App

You can send messages back and forth with your doctor or check test results through a log-in-protected website or app. You can also have a telemedicine appointment through these platforms. It is a good idea to store your username and password in a safe place so you have it handy for logging in. Practice doing so the day before your appointment in case there are any problems.

FaceTime, WhatsApp, or Skype

You might connect through a different app. If so, make sure you know how to log in. Try using the app to chat with family and friends before your telemedicine appointment. They can tell you if you are pointing the camera in the wrong direction, for example. If you are uncomfortable using the app for the first time, ask someone to help you walk through it.

If you or your loved one has cognitive problems, dementia, hallucinations, or delusions, telehealth visits may be confusing or unsettling. Some patients with delusions might fear that they are being recorded or that someone else has been allowed into the home. Telehealth visits are not recorded—they simply allow the healthcare provider to see the patient from a remote location without meeting in-clinic.

How to Prepare for a Telehealth Visit

Write Down Your Questions

Prepare a list ahead of time and put it in the spot where you will have your visit. Your doctor will have questions for you, too, so try to focus on “ask me three:”

  1. What is my main problem?
  2. What do I need to do about it?
  3. Why is it important for me to do this?

Know Your Medications

Have a list of all your medications—including over the counter, supplements, and vitamins—or place the bottles themselves where you will have the call or video chat. You will want to confirm with your doctor exactly what, when, how, and why you are taking everything.

Don’t Go it Alone

Have a care partner with you during telehealth visits since this is a new situation and can take time to adjust. In the case of video visits, a care partner can help by controlling the camera while you focus on sharing your concerns with your doctor.

Hopefully, one silver lining of this coronavirus crisis is that by increasing acceptance, access, and insurance coverage for telemedicine now, your continuity of care will be even stronger in the future. For more tips, feel free to explore the Lewy Body Dementia Association website. You can also sign up for our email newsletter, connect with us on Facebook and Twitter, or contact us directly with any questions you have.