Adjusting holiday expectations for loved ones with dementia

This interview has been lightly edited for clarity.

Douglas: Let’s talk about the holidays. We’ve got Thanksgiving; we’ve got Christmas; we’ve got Hanukkah; we’ve got all kinds of reasons families are together. What should you do? What should a caregiver know? And how to adjust things to help out?

Morris: We know that holidays are challenging for everyone. Then if you throw someone in that who has dementia, I think the biggest thing is we, as caregivers, we have to remember that we have to adjust our expectation of what the time is going to be like. You can still have fun. You can still have a fantastic celebration, but it’s probably not going to be the same. You want to try to check in with the person that has the disease. “How are you doing? Are you OK?” You want to focus on things that bring happiness and letting go of activities that are overwhelming to the person with the disease. My family, at least, our celebrations are loud. That might be something you have to take a look at, and maybe change that a little bit.

Douglas: I remember reading somewhere, somebody talking about not having the whole family over at once or having them come in small groups.

Morris: Those are great ideas, just to try to limit that stimulation, that overstimulation, even if you can somehow have a quiet room. Maybe people at different times go in there to speak to the person with the disease; you just want to try to lower their stress. Because I promise, it will lower your stress as well. We also just want to think about keeping the person with the disease on a familiar routine. If they eat lunch every day at noon, then you don’t want to have your dinner at 2 p.m. You want to try to keep that schedule for them and make sure that other family members or people coming in know that mom is having some trouble with her words, finding it might take her longer to answer.

She might not think of the word, but we always want these folks to feel a sense of self throughout the disease. It’s important that we don’t just go, “Oh, mom has Alzheimer’s; she can’t help us anymore.” Don’t put her in a corner, right, because they still want to feel connected. On some level, mom probably knows she always makes the mashed potatoes, so just involve her or him as much as you can — maybe they can put the napkins on the table.

Douglas: I think that point of lowering expectations, that yes, this isn’t going to be the way we did it. We’ve done it this way for 20 years.

Morris: You have to take the perspective of the person with the disease. It’s very different than what my or your perspective would be. The person with the disease, they can’t change. They’ve lost the ability to problem solve, to sequence, to even speak sometimes. So it’s on us as caregivers to change our interaction.