The facts about COVID-19 are frightening, and also very complicated. Their full implications can be difficult to understand for many of us. This holds true to a greater extent for people living with FTD, and even more so for people living with primary progressive aphasia (PPA).

People living with PPA may not be able to find the words to formulate their questions or express their feelings. Others may have difficulty understanding what they read in newspapers or hear on television. These challenges in communication can cause frustration, confusion, and apprehension.

Friends, family members and care partners need to be even more mindful of these difficulties. Here are a few suggestions that may be helpful:

• If you are a care partner to a loved one with PPA, you can help by taking a proactive role by offering word choices that appear suitable.
• With that said, it is particularly important to give individuals living with PPA ample time to express themselves. Creating that space for communication at the pace possible for your loved one is crucial.
• Even if the correct word cannot be found, the individual with PPA may be able to convey their thoughts through lengthy circumlocutions that are easily interpretable if we listen patiently.
• Again, grasping COVID-19 information is challenging for any of us, but for people with PPA, it will be helpful to review it together, simplify it as much as possible, and repeat the process as often as is reasonable.

For most people with PPA, telephone conversations are even more difficult than face-to-face communications. The isolation mandated by COVID-19 becomes particularly problematic for these individuals because it may not be possible to alleviate it by contact through electronic and social media. The one advice I can give to care partners and family members is to keep improvising, and do whatever is feasible to maintain channels of communication within the restraints that we all need to follow.

At present, I find it difficult to imagine a world without COVID-19. But that day will come, probably sooner than we imagine. In the meantime, we have huge challenges to face. AFTD is collecting resources and information regarding COVID-19 on its website. If you need to talk to someone, do not hesitate to reach out to AFTD’s HelpLine – also reachable by calling 866-507-7222. And there are also private Facebook groups – including AFTD’s private group, which can connect you with peer support each day.

I have learned to have great respect and admiration for the resilience and creativity of people living with PPA and their families. These are trying times but I know that they will face them with courage. People living with FTD, their families, and all affected by this disease should know, of course, that they are not alone. We are here to help in any way we can, and we welcome your ideas and guidance about how AFTD can best support you and your family during this time.

Marsel Mesulam, MD
AFTD Medical Advisory Council