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How to Manage FTD Care While Kids are Home During COVID-19 – Spring 2020

The stress put on families when a parent is diagnosed with frontotemporal degeneration (FTD) and there are children at home is significant.

The stress put on families when a parent is diagnosed with frontotemporal degeneration (FTD) and there are children at home is significant. Add to that the COVID-19 pandemic forcing schools and childcare facilities to close in most states, and families now find themselves adjusting to new childcare arrangements while trying to help their children continue their education and attend school online.

To help families better manage the realities of providing FTD care while their kids and teens are at home, the Association for Frontotemporal Degeneration (AFTD) has compiled the following suggestions:

Facilitate social time. Socializing with friends is vital to kids and especially teenagers. While establishing boundaries around screen time and social media usage is important, remember that the internet and the phone are the only way many kids have to maintain connections with their peers while social distancing. Use technology as a tool to help your kids stay connected and interact with peers safely and appropriately.
Emphasize open communication. Allow space for children to share feelings of distress, challenges they are facing, and any needs they may have. If they have a particular confidante they like to talk to in addition to a parent – another family member, a therapist or counselor, or a school personnel member – see if online communication methods (phone, video call, email) are available.
Set aside time to engage in a personalized activity with each child. Scheduling time with each of your children to do something special – working on a puzzle, baking together, or just walking around the block – can help to take their minds away from the stresses of both FTD and COVID-19.
Identify individualized activities that can benefit the person diagnosed, while including the children. For example, watching movies, drawing pictures, helping with household chores, etc.
Adapt old favorite activities for the new climate. If a beloved family activity is no longer viable due to FTD and/or stay-at-home orders, suggest new ways to accommodate your family’s new normal. For example, if the preferred activity had been going to concerts, put together a playlist of favorite songs using a streaming service and call it a “home concert.”
Give your children time to explore their curiosity. Structured activities and academic assignments from school are important. But also important is unstructured time to let your children learn about things that interest them, at their own pace.
Care partners should set aside time to attend to their own health. Demonstrating good self-care will not only help you cope, but can also serve as an important model for children.
Set realistic expectations for yourself. As an FTD caregiver with children in the home full-time, you are dealing with a lot right now, especially if you are also working from home. It is not realistic to aim for perfection – you already have enough pressures to deal with. As best you can, give yourself the grace to accept when things don’t work out as you had planned, as both the caregiver or parent. These are unprecedented times – just try to do your best, and move on to the next day.
Acknowledge and appreciate the good things children are doing to adjust to this confusing and stressful time in their lives. Kids and teens can feel overlooked when a parent requires significant time and attention. Focus on your children’s strengths and accomplishments to help them build healthy coping skills.

For more information to help children cope with an FTD diagnosis of a family member, the AFTD has a separate website AFTD Kids and Teens. There is a section targeted to helping kids ages 4 through 11, and one for teens, about age 12 and older.

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