The holidays can magnify everything about living with FTD, but can also become opportunities to adapt and create new ways for connection. For families navigating FTD, the key isn’t trying to recreate what was, but discovering what can be.

As a progressive disease, FTD impacts family gatherings in different ways, depending on the degree of neurodegeneration that has occurred and the understanding of what is to come. At first, no changes may be necessary, and you can start educating extended family members about FTD. When modifications to traditions are necessary, it is not anyone’s fault, but rather a result of an FTD diagnosis.

One family member described their adaptation: “I ask him to tell jokes, something he’s always loved and still mostly able to do, even though I’ve heard them a thousand times.” Another found in shifting from elaborate gift exchanges to simple, manageable stockings, everyone was able to still participate in gift giving, but in a more manageable way. These are conscious choices—to focus on joy and being together. Everyone can relate to how just sitting with a loved one can bring connection and well-being, regardless of their medical conditions. For diagnosed individuals, the holidays can highlight losses in independence and decision-making. “I was the one who always hosted the family, and now I had to change to going to my daughter’s,” one observed. Recognizing there may be grief and loss for the person diagnosed can ease anxiety and frustration. Finding small areas of participation—whether it’s taking time to sit with mom or baking a pie together—can help maintain traditions and connection, even while the season emphasizes what’s changed.

What Might the Day Look Like?

Adaptation does not diminish the meaning of the holidays, even if there are changes. That may look like hosting smaller gatherings, accepting invitations instead of hosting, or identifying a quiet room where someone can rest if the day becomes overstimulating.  One person living with FTD shared that using hearing helped soften overwhelming noise. These are a few other strategies that support comfort and connection for everyone involved:

• Name the changes. Acknowledging that “this year feels different” or “we miss how things used to be” gives voice to the invisible grief. Grief is personal, and each person in the family may carry it differently.  Naming it gives permission to honor it without judgment.
• Tweak traditions. Maybe the tree-decorating is done differently, maybe the gift exchange is simpler, maybe the meal is smaller. The tradition may shift, but the heart of connection together remains, even as the details evolve.
• Create something new. New traditions can emerge that honor everyone’s abilities and comfort.  A quiet moment to share memories, or a role that allows the person with FTD to participate meaningfully, can help keep them centered in the celebration.
• Give space. Recognize that those caring for loved ones with FTD may feel under-supported, tired, or disconnected from the holiday. Offering time, help, or simply a compassionate presence can make a difference.

Many families find that simplifying traditions brings more ease and closeness. Secret Santa exchanges can replace overwhelming gift lists. Store-bought dishes can sit proudly alongside homemade favorites. Adult children may take over hosting duties, allowing parents to simply be present. One daughter-in-law who loves wrapping presents now handles all the gifts, turning what was once stressful into something joyful and shared.

The holidays don’t have to be all or nothing. A brief visit may be more meaningful than hours of overstimulation. Video calls from home can provide connection without the pressure of travel. Playing with grandchildren can offer both joy and a natural escape from conversations that have become challenging.

Acknowledging the Grief

Care partners carry their own grief through the holidays. “The ambiguous loss of seeing the man I’ve known for 30 years disappear into the abyss of FTD while still looking the same has made it difficult for me to accept the full loss of this disease,” one spouse reflected.

Recognizing that grief, instead of pushing it aside, can create unexpected moments of closeness. Joy and grief can coexist. It’s okay to laugh, to remember, to feel sad, to feel grateful. Grief doesn’t follow a straight line.

“I appreciate what we had and miss it all the time,” one care partner said, “but more importantly than those moments, I try to remember the feelings associated with those memories: the joy, the pleasure, the happiness.” Evolving from mourning specific traditions to honoring the spirit behind them can open unexpected paths forward.

Finding new ways to celebrate doesn’t erase the grief of what’s been lost. But it does honor what remains: the love, the connection, the desire to mark special moments together. One person’s care partner put it simply: “I’d rather have what he is now than not at all.” Meaning doesn’t require perfection. It simply asks us to show up with love, openness, and flexibility, however that looks this year.

AFTD resources:

• Navigating the Holidays with an FTD Diagnosis webinar
• Resources for Traveling with FTD (PDF)
• FTD Fact Sheet FTD (PDF)