As diagnoses of Alzheimer’s disease and dementia continue rising in the U.S., millions of families are learning to balance the celebratory traditions of the holidays with the necessary care and routines for loved ones living with these conditions.
UCLA Health dementia care specialists say caregiving and holiday festivities do not have to be mutually exclusive, but do require some adaptations to make the season enjoyable for all.
“Try not to have expectations of certain traditions needing to be the same,” said Leila Parand, MD, a memory and cognitive disorders neurologist at the Mary S. Easton Center for Alzheimer’s Research and Care at UCLA. “It’s important to be adaptable to the situation and not expect the person to do things like they used to do.”
“If your mother now has memory problems and she was the main person hosting the festivities in the past or had cooked certain meals, take into account what she can do and what she wants to do to help with the preparations,” Dr. Parand continued. “If you want to take family photos and she just doesn't want to be a part of it, try other ways to capture and remember the moments together.”
Regardless of the time of year, those living with dementia or Alzheimer’s disease often thrive on routine, said Dementia Care Specialist Kemi Reeves, MSN, GNP-BC, of the UCLA Health Alzheimer’s and Dementia Care Program.
“It's important to identify when people do best,” Reeves said. “If they are a morning person and they are at their most alert and most engaged, or if that is the case for the afternoon, that may be when the visiting happens. So, if someone is more disoriented or irritable in the afternoon, maybe we have a holiday breakfast rather than a holiday dinner.”
It can all be too much
Large gatherings and noisy environments may be more difficult for a person with dementia to tolerate, especially if they have accompanying sensory issues such as hearing loss.
That may mean having to skip the family Christmas party and instead opt for having family members stagger visits throughout the day, Reeves said.
Traveling with a loved one with dementia can also present challenges and upset routines.
Whether it be traveling to a neighbor’s home a block away or a flight to a different state, Dr. Parand said it’s vital to ensure that the person they’re caring for has all they need as part of their daily routine. For people with dementia with more acute behavioral issues, Dr. Parand said families or caregivers should reconsider large trips with those loved ones.
“You're trying to minimize any kind of strain,” she said. “When they are in new surroundings, it can be difficult to say what they need.”
Will they remember me?
With the holidays being a time when families and friends reunite, it can be difficult for relatives or friends to hear that a loved one with dementia no longer recognizes them or misidentifies them.
Reeves said this can result from the person having a disoriented perception of the date. While it may be 2023, the family member may be under the impression they are in 1983, for example.
“When they are looking for their children or grandchildren, they may be looking for a person walking through the door in 1983,” Reeves said. “They may be looking for a young adult and not a middle-aged or late-life adult. They may be looking for grandchildren that are babies and not necessarily who may be college-aged at this point.”
As a result, a family member with dementia may misassign the relationship, such as mistaking their son for their brother.
While this can be upsetting, Reeves said it is important to focus more on the fact that the recognition of the relationship is still there.
"Even though they may be misassigning the relationship, they are interacting with love and with care and familiarity,” Reeves said. “But if I walk into the room, they’d recognize me as a complete stranger because I am. You want to pay attention to the relationship and less about the title because that is simply a consequence of the dementia.”
Constantly trying to correct the person if they misassign identity can make the person self-conscious and can cause them to become upset. Instead, Reeves recommends just to respond in kind. Additionally, family members can create memory books that show photos of them together through the progression of their lives. Showing this to the person prior to relatives visiting could help to better orient them on who is coming and their ages, Reeves said.
For children, Reeves said one way for them to interact with a loved one with dementia is by bringing a recent school project or reading a letter they wrote about what they did over their summer vacation, for example.
“There is still a way for them to spend some valuable time together,” Reeves said.
Caring for the caregivers
For those who care full-time for a loved one with dementia, the holidays can help to provide some relief by having other family members around to help.
Reeves said while caregivers may do an amazing job of making a schedule for their loved one, they often don’t include their own needs in the plan. She said it is important for caregivers to incorporate into their routine daily and weekly breaks, whether it be a walk, having lunch with friends or taking time for their own appointments.
“It's nice to have those kinds of substantial breaks when family are visiting for the holidays but it’s not something that is only reserved for those times,” Reeves said.
That said, caregivers themselves are part of the routines and environment that those with dementia look to in their day-to-day lives. While it can be tempting for a caregiver to have an extended break while family is around, Reeves said too long of an absence can disorient the person living with dementia and cause behavioral episodes.
Part of the experience
While dementia and Alzheimer’s disease can present many changes and challenges for families around this time of year, Dr. Parand and Reeves said it’s very important to still include people with those conditions in the holiday experience if they’d like to be part of it.
“Think back and try to incorporate those things that the loved one loved most about the holidays,” Reeves said. “If there was a favorite dish or a favorite song or a decoration, something to trigger those memories, you want to incorporate that and highlight that in the visit.”
“A caregiver’s mood and spirit have more meaning than words,” Dr. Parand said. “A kind gesture or expression can bear a lot of meaning.”