Holiday dinners may be more difficult to execute, but families can still manage to find the joy.
Family and friends joining together, a traditional meal with all the trimmings, cousins teasing and children laughing – it all makes for cheerful holiday commotion. But when you have dementia, it's just too much. Choosing favorite foods becomes complicated, and conversations swirling around you can turn into cacophony.
Jeff Borghoff, 52, is facing his first Christmas since learning he has early Alzheimer's disease. Last month, Thanksgiving gave him a taste of the difference in holiday gatherings, as some 20 guests filled his Forked River, New Jersey, home.
Making menu selections at the local Starbucks or Panera Bread has become daunting for Borghoff. On Thanksgiving, his family made sure he could enjoy a full helping of holiday food. "They had everything on my plate that I could possibly choose from, and I just ate what I wanted," he says.
The after-dinner interlude was more challenging. "I have a big family room that stretches into the kitchen and there are tables and chairs everywhere," Borghoff says. "And I remember kind of sitting there [with] all these conversations going on all over the place. And you really don't know what anybody is saying. All you hear is, it's almost like that Wah-wah-wah-wah in the Peanuts commercial."
During past holidays, Borghoff could easily focus on his own conversation and either block out nearby chats or simply join in. "I can't do that anymore," he says, because Alzheimer's is affecting his brain's executive and multitasking functions.
"I lose the ability to process when there's lots of commotion and talking and activity," says Borghoff, a now-retired software developer. "I just kind of zone out and I go into this fog. That then turns into me getting really, really, tired."
Attuned to his state of mind, Kim, his wife, will urge him to take a break. "I'll go upstairs and lie down for about half an hour," he says. "And I'm usually fine after that. And everybody's cool with that. Everybody in my family is like, 'Go lie down, Jeff. It's OK.'"
For the past two decades, Meryl Comer has been the at-home caregiver for her husband since his diagnosis of early-onset Alzheimer's disease. With extensive credentials as an Alzheimer's advocate, including testifying before Congress, and as the author of "Slow Dancing with a Stranger," Comer turns an unflinching eye toward the realities of dementia.
"Holidays are one of the most challenging times for caregivers and for those living with the disease, especially in the early stages," she says. "For those living with dementia who have just been diagnosed, they are smart, and they are hiding out as much as they can. And it's very hard for them. It takes a lot of energy for them to make things appear normal when they're confused."
If holiday guests don't realize a person has dementia, it only increases tension, Comer says. Knowing about the diagnosis isn't enough, she adds. Guests need a heads-up on how to respond. "Dad or Mom may ask the same question several times," she says. "I just answer as if it's the first time."
Caregivers must keep their antennae up at all times. "Too many things that require processing for someone either agitate them or they go very quiet," Comer says. As the disease progresses, she says, what works on one occasion won't necessarily work on another. "Between Thanksgiving and Christmas, you may be dealing with a totally different set of circumstances that you've got to manage."
Making It Easier
A calm, thoughtful and understanding approach is needed, says Jody Gastfriend, vice president of senior care services at Care.com: "Even though family members may have really good intentions, they need to go into the holidays with some collective strategies about how they're going to communicate and involve with and engage with the person who has dementia."
Tips for Holiday Coping:
Schedule the family meal earlier in the day, Gastfriend suggests. People with dementia may "sundown," or get more confused, in the evening. Sleep disruption from later hours or heavy meals can also lead to fatigue.
Be patient. "I recommend that people just reminisce out loud," Comer says. For instance, "Oh, Mother, remember when we used to bake such and such?" That might trigger a long-term memory or reaction.
Assist your host. An adult daughter or son who's cooking, cleaning, seating and serving guests may not be able to attend to a parent's extra needs in that moment, Gastfriend points out. "It may help to have someone who's kind of assigned to that person," she says. "Just to keep an eye on them."
Take the party to your loved one. Gastfriend recalls a personal experience with her father's dementia. "We wanted to take him home one point at Thanksgiving when he was in the nursing home," she says. "We came up with this whole strategy. And then we sort of realized – we're doing this for us and not for him. It actually wasn't the right thing for him. So instead we went to the nursing home and had a pre-Thanksgiving meal with him."
Lower expectations. "I've learned over the years because I've been doing it so long," Comer says. "I make a beautiful table; I cook the dinner; I do the trimmings. And I have no expectation that [her husband] is aware of it in the moment or that it will be held as a memory going forward. We're celebrating in the moment."
Let kids contribute. Helping out and engaging with a grandparent or other family member with dementia can be a powerful learning experience, Gastfriend says.
These days, loud noises like choir music bother Borghoff. Last Sunday, his family traveled to a church about an hour away for a Christmas play. "I've seen it about 1,000 times," he says. "So I said, 'You know what … you guys go. I'll stay home and relax.'" Instead, he's pitching in by holiday shopping online and wrapping presents.
Borghoff understands the risk of isolation that comes with a dementia diagnosis. On that front, he's been working as a national early stage advisor to help others in his situation. He's also participating in a clinical trial for the Biogen drug aducanumab. And he does all he can to stay hopeful. "I really find a lot of strength and joy from my family," he says. "They've been very supportive through this whole thing. I have a strong family."