Handling COVID’s Unique Challenges for People with FTD and ALS/FTD

Beth Rush

If you or a loved one are living with any form of FTD, or ALS with FTD, the COVID-19 pandemic now requires careful attention to two challenging situations: the FTD or ALS/FTD journey, and an evolving pandemic that has brought disruptions to nearly every aspect of life. In my work with people with ALS/FTD, their family members, and their paid caregivers, I have gained some perspective over the past month that I hope will be helpful to you and your family.

Disruptions of Routine – and Impact for People with FTD and ALS/FTD

Individuals with FTD or ALS/FTD will all be affected differently by the COVID-19 pandemic. For individuals with behavior and thinking change, one of the hardest challenges to meet may be lack of awareness of the COVID-19 pandemic, and why caregivers and others around them are changing their behavior. The person living with FTD may not have insight, patience, or understanding to “connect the dots” between what they hear in the news in passing and the changes going on around them.

For those of us with a loved one who has FTD, it may be hard to explain why people are not visiting, why the individual cannot go out without a mask or must sanitize once coming in, and why activities and outings are not going on as usual. Caregivers wearing masks and sanitizing around the person with FTD may appear strange to them.

Further, newly recommended precautions may delay schedules and routines that the individual is used to. With that disruption of routine, agitation and/or conflict may emerge. They may question or grow impatient with the steps that a caregiver is taking to follow necessary precautions. There may be extended questioning of what the caregiver is doing and the person with FTD may never “see” or realize what caregivers are doing to protect them because of restricted self-awareness and understanding of the current environment.

The best thing to do in these situations is to establish a routine (even if it is a new routine that must be followed consistently through the pandemic guidelines such as a “shelter in place” order).

This will allow the person with FTD to better anticipate what to expect. Reassure them. Respond to the emotion they are expressing, rather than arguing about the process or logistics of how things are going. For example, if the person with FTD is upset that breakfast is delayed with the need to wash hands, sanitize items related to breakfast, or that the caregiver must wear a mask, the caregiver may say, “I know you are used to hot coffee at 8 a.m. I can’t wait for us to sit down and have our coffee together at 8:30 a.m.” In this example, you are acknowledging the frustration and impatience of the person with FTD, but also setting an expectation that shows the “demand” will still be met.

COVID-19: Special Precautions for People with ALS/FTD

For those of us with ALS/FTD, the precautions for social distancing and personal protection become very important. Given facial muscle tone and praxis, and/or possible restrictions in hand or arm movement, it may be hard for the person with ALS/FTD to put on a mask or to take it off. In this instance, the work of the caregiver assisting the person with FTD/ALS becomes more essential.

Caregivers must take extra precaution with sanitizing, disinfecting, and washing hands and all equipment the person with ALS/FTD uses.

This includes extra safety and handling with tube-feedings, suction devices, ventilation, touch screens for voicing, and durable medical equipment such as wheelchairs, walkers, and shower chairs. Caregivers must wear personal protective equipment. The surgical N-95 masks really are the best at defending any droplet-based infection.

Moreover, paid caregivers must make sure that if they have contact with people other than the person with ALS/FTD, that they do not unknowingly transmit infection. One way paid caregivers can do this is to arrive for work with the person with ALS/FTD and then switch to clean scrubs or dress for the work day once in the home of the person with FTD-ALS. If there is any change in respiratory status, secretions, or swallowing for the person with FTD/ALS, contact the primary care provider and/or neurologist for further directives.

FTD, ALS/FTD and Isolation

Isolation is a challenging factor for caregiving for FTD or ALS/FTD.

For people with ALS/FTD, isolation is implicit to being compliant with the precautions for infection control prevention. Given that physical visits from those “on the outside” are too risky for the person with ALS/FTD – and that they are likely unfeasible for many of us at present, it’s important to explore options for regular contact using alternate means. For some people, a video visit with family members, friends, and others in the community is really helpful. This can be done with video-messaging software such as Zoom, FaceTime, Google Duo, or Skype.

If this technology is “too much,” regularly scheduled phone calls (ex: every evening at 6 p.m. to talk during dinner) can help remove some of the isolation. Many churches, synagogues, mosques and local community organizations have been offering video streaming or pre-recorded sermons, lectures, services, and presentations – and there are likely offerings that suit you and your loved one’s own interests and needs.

Set up a schedule with the person with ALS/FTD, family and paid caregivers. Write these appointments into the daily schedule that can be visible to the person with ALS/FTD, so that there are new things to look forward to as the days go on.

For family and paid caregivers, now more than ever, you need to make sure you are getting any self-care you can get. Ask friends and family to consider gift cards, Amazon or other mail ordered packages for books, videos, bath salts, or other indulgences. Make sure you are eating, exercising, and getting some sleep. Use a journal, an audio recording on your phone, or a phone call with a trusted friend to vent your frustrations. Do not keep things bottled up in side.

Sustaining Hope

Remember to live well. Remember to incorporate the components of routine that you normally live by, the best that you can. Sleeping well, eating healthy, and getting exercise and social contact is important.

If you have a spiritual practice, make sure you are checking in, perhaps through a video or phone chat for support. Remind yourself that you are doing a great job and that all of us are facing challenge.

If you have questions about FTD or ALS/FTD and COVID-19, AFTD’s HelpLine – also reachable by calling 866-507-7222 – can provide guidance. You can also connect with peer support through AFTD’s private Facebook group. AFTD continues to offer resources targeting the different forms of FTD and COVID-19 on its website. I would encourage you to share an update on how your family’s situation has been changed by the COVID-19 pandemic, and then take the time to read how others are being affected, and finding solace and finding hope.

There is no such thing as perfect with this journey, and it is OK to have some “trial and error” in meeting your needs and the needs of the person with FTD or ALS/FTD. You may not get it right the first time, but keep trying. You are worth it!

I wish you and your family safety and peace on your journey, during these unprecedented times.

Beth K. Rush, Ph.D., ABPP
Mayo Clinic Florida

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