Helping a Loved One With Dementia at Family Gatherings
Here are suggestions for engaging with him or her during family events
In many families, holiday or other event gatherings are a collaborative effort. Someone brings the main dish, someone else brings a salad and another person shows up with dessert.
Maybe it’s time, experts say, to assign one dinner guest to keep an eye on your family member who has Alzheimer’s disease or other dementia. Otherwise, that relative may end up sitting alone, staring into the distance, as others mingle after the meal.
“Most people with early or middle-stage Alzheimer’s enjoy being social, and many would enjoy eating a holiday dinner with the family,” says Dr. Suzanne Schindler, a neurologist and a professor at Washington University School of Medicine in St. Louis.
Consider What the Person with Dementia Would Enjoy
When planning the event, Schindler says, it’s important to take these individuals’ needs and wants into consideration. What would they like? What would make them happy? Maybe your mom likes to dance. Encourage the younger children to ask her to dance for a bit. Does your dad enjoy singing? A family sing-along after dinner may be in order.
"You want the person to be engaged, but not too much or too little."
Someone with mobility issues may prefer to visit quietly with one person at a time, reminiscing about previous holidays. A family photo album may spark that conversation. Sometimes, just sitting together, observing others at the gathering, may be enough.
“You want the person to be engaged, but not too much or too little,” Schindler says. Too little might be seating the person at the back of a room. Too much might be seating the person in the middle of a noisy crowd or in the path of active children.
What topics should be avoided? Current events may be troubling for someone with short-term memory loss. Schindler also cautions against correcting those with dementia, who may say things that are inaccurate, or calling them out for being repetitious. She recommends avoiding any confrontations.
Don't Make Assumptions About Alzheimer's
An estimated 5.7 million Americans are living with Alzheimer's. Yet, many people still are not well informed about this debilitating disease, for which there is no cure. Simply acknowledging that a family member has Alzheimer’s often is emotionally difficult for many people. Beyond sadness, some experience fears that they, too, may develop the disease, though experts say that age is a far greater risk factor than genetics.
Monica Moreno, senior director of care and support for the Alzheimer’s Association, endorses Schindler’s suggestion that before families gather, they talk openly about a loved one’s level of disease, what to expect and how they can help.
“Many people hear the word ‘Alzheimer’s’ and they think of someone who can’t communicate or doesn’t know what’s happening around them,’ Moreno says. “That’s not always the case. Alzheimer’s affects everyone differently, and that’s why we shouldn’t make assumptions.”
Moreno offers these general tips:
- Consider holding the gathering at brunch or lunch, because some people with dementia experience fatigue or confusion later in the day.
- Interact directly with the person, rather than his or her caretaker, at the event.
- Be a good and patient listener, because some people may need longer to formulate their responses to questions.
- Invite the person to participate in a non-stressful way, perhaps by helping set the table or fold napkins, depending on his or her level of function.
- Provide a quiet place where the person can spend some down time if needed.
Moreno also recommends keeping your sense of humor, which lightens the mood for everyone and can ease communications. And keep in mind that a specific tip or strategy that doesn’t work one day may well work the next.
The Alzheimer’s Association’s website offers more advice on how to communicate with individuals in the early, middle and late stages of the disease, including a short video.
Try to Interpret Unexpected Behaviors
If your loved one with dementia becomes distressed during a gathering, Moreno recommends trying to redirect him or her. “Change the topic ... or invite someone else to join your conversation,” she says. If that doesn’t work, try to understand any behaviors you may witness, because all behaviors are a form of communication.
“A person may try to get up and leave. By doing this, what is he or she saying? Perhaps they need a drink or to go to the bathroom, or perhaps they feel anxious or over-stimulated because the noise level is too loud. It’s helpful to know what triggers may bring on different behaviors,” Moreno says.
And if things get out of control, the Alzheimer’s Association has a Helpline staffed by clinicians who can offer support all day, every day. The number is 800-272-3900.
Have Realistic Expectations as Circumstances Change
As a person’s dementia progresses, his or her ability to interact with other people will change as well. The family will have to adjust to that, and there might come a time when a big gathering is just too much for a loved one with dementia.
For example, my friend Elizabeth wasn't at her family’s Thanksgiving dinner this year. I wrote about her two years ago when at 68, she was the youngest person living in a memory care unit after a diagnosis of Alzheimer’s. Now she is in a skilled nursing unit, and Michael, her husband, tells me it’s not easy to keep Elizabeth engaged when he visits every day.
“Elizabeth will not initiate any conversation, and it’s often difficult to even get a reaction to what I say,” Michael says. “We almost always go for a walk on the grounds. We look at the trees and the beautiful fall leaves, and I talk about them. That always provides a good distraction.”
Elizabeth’s and Michael’s family gatherings have always been large. They have three children with families of their own, plus Elizabeth has eight living siblings and Michael has two, all with families. “I don’t bring Elizabeth home for the holidays,” he says. “The crowd would be too much.”