Holiday family gatherings can be challenging under the best of circumstances.
Expectations are often too high. Relatives feud about traditions, food, alcohol, long-ago slights, politics, and just about anything you can imagine. Noisy kids run wild.
Celebrating with a beloved family member or friend with dementia can be another added stressor. Dementia experts can’t help you with Uncle Joe’s crazy conspiracy theories, but they say planning, reasonable expectations, and flexibility can help everyone enjoy a party when a guest has Alzheimer’s or another form of dementia.
We spoke with some experts — Denise Brown, founder of The Caregiving Years Training Academy ; Kellie Butsak, associate director of programs for the Alzheimer’s Association Delaware Valley Chapter; and Felicia Greenfield, a social worker who is executive director of the Penn Memory Center — about how to arrange holiday celebrations so that everybody, including people with dementia and their caregivers, can have a good time.
Remember that we’re 20 months into the pandemic now. Many people with dementia have had less contact with family members and friends than usual. “People change so much in two years, especially teenagers and young adults and kids,” Brown said. Isolation, Butsak said, has led to faster mental decline for many. This could lead to more forgetfulness, confusion, and unruly behavior at social events. “Things will feel less familiar,” Butsak said. “Places will look less familiar.”
Keep in mind that it’s the healthy people in the room who need to make adjustments. The person with dementia may not be able to because of their disease.
Start with realistic hosting ideas. A host who is also a caregiver may not have the energy to make a big meal or lots of cookies. This may be a good time for others to bring more food or buy prepared food from the shop or a restaurant. There’s no shame in asking for help.
Educate other guests about what to expect from the person with dementia before the event. This should be an update on how functioning has changed in the past year, what stresses the person out, and what kind of conversation is possible. Tell guests if the person with dementia may not remember them. “If this happens, it’s OK,” Butsak said. “We can’t change it. We just kind of have to go with the flow.” They can still enjoy each other’s company.
Some caregivers still try to hide a loved one’s dementia, but experts think openness works better. Besides, Greenfield said, “the people you’re trying to hide it from probably already picked up on something.” If you’re still processing a new diagnosis yourself, Brown said, it’s alright to tell guests what you know but add that you’re not ready to talk about it more.
Keep it simple.
People with dementia are easily confused and over-stimulated. If possible, keep the noise down and have a quiet room available for rest. Remember that people with dementia do best with a routine and familiar surroundings. If those have been disrupted, be understanding. Unfortunately, music and candlelight can make things worse. Bright lights are best for preventing confusion. People with dementia may not be able to handle an all-day celebration. Greenfield said many sleep more than others, so setting aside a place for a nap is also a good idea.
Accommodate disabilities. This goes for all your guests. Make sure there’s a clear path for people who use walkers or wheelchairs and an accessible place at the table for them, Brown said. Think about where you’ll store a wheelchair if a guest doesn’t need it all the time.
Think about timing. People with dementia often experience “sundowning” or confusion in the late afternoon or early evening. Earlier celebrations may be better for them.
One-on-one conversation is best. While people in the early stages of dementia may love to have large families around them, those with more advanced disease often do better in small groups, Greenfield said. Even then, it can be hard for people with dementia to keep up with fast-paced conversations across the table. “Look them in the eye and speak loudly and clearly and slowly,” she said.
Don’t correct. It’s not uncommon for people with dementia to tell stories repeatedly or to tell stories that aren’t true. There’s no point in trying to correct them. “Who cares? Just go with it and try to have fun with it,” Greenfield said.
If possible, keep people with dementia involved. Some may enjoy chopping vegetables, making simple crafts with the kids, singing carols, folding napkins, or watching sports. Many love looking at old family photos and talking about them. If you want people with dementia to help, tell them what to do one step at a time. Many can’t remember multi-step tasks.
Greenfield said people with dementia are often ignored once the meal starts. “They’re otherwise isolated, and that’s hurtful to them and their caregivers,” she said. It can be difficult to keep up a conversation, but try. If all else fails, try to talk about the past, because older memories tend to stay intact longer.
Don’t be surprised if there’s a meltdown. Try to figure out whether the person with dementia is in pain, tired, or overwhelmed. Think in advance about things that might be soothing.
Don’t stress about the food. Many people with dementia lose their appetites. Their taste buds change, too, so they may not like the same food. Let it be. Alcohol is another story. It makes brain functioning worse in normal people. People with dementia shouldn’t have much of it, Greenfield said. She recommends the “loving deception” of nonalcoholic wine and beer for dementia patients who like to drink.
Dementia and travel may not go well together. Dementia often gets worse in unfamiliar settings and when routines have been disrupted. If you must travel, allow extra time to minimize stress. Brown thinks any long-distance trips would be difficult this year because of COVID-19. “I would really hesitate to have someone with dementia travel right now,” she said.
Go to them. If people with dementia live in an assisted-living facility or nursing home, families often wonder whether to take them out for holiday celebrations, experts said. Most decide to celebrate in the facility and possibly have another family celebration somewhere else. You’ll need to check visitation rules, of course.
Accentuate the positive. Greenfield said that one of the techniques for coping with dementia that she teaches families is practicing gratitude. “We try not to focus on the losses,” she said.