It was the Christmas upset that became a family triumph: Everyone had gathered at the Strubles' home in Bloomfield Hills, Michigan – and just as the gang was headed to bed on Christmas Eve, they heard the clatter of dishes being arranged on the table.
The elf at work was the family matriarch, Bertha VanTuyl, then in her late-90s, whose dementia had, until that moment, left her largely unengaged. But at 11 p.m. that night, she was in the kitchen, slicing up and setting out a traditional Stollen fruit cake. So what did the rest of the family do? Join her, even though the cake was meant for someone else. "That was the best memory we had," Laura Struble says about her grandmother, a nurse who died of Alzheimer's 20 years ago, and whose care for her patients inspired Struble's career expertise in dementia.
Now an assistant professor at the University of Michigan School of Nursing, Struble says that when caring for relatives with dementia: "You have to be prepared during the holidays to make adjustments to your plan."
That may mean lowering expectations of your loved one and yourself – "Let the dusting go," Struble says – and rethinking your holiday itinerary as well as the kinds of presents you ask for (yes, ask for) and give.
Remember, too, you are far from alone in this situation. As Americans live longer and age in mass numbers, dementia has become increasingly prevalent. Dementia is not a disease but an umbrella term for a variety of manifestations of brain disease that impede mental function such as memory, communication and the ability to reason. While it's not a normal aspect of aging, the symptoms often surface later in life, according to the Cleveland Clinic, which says the illness affects 5 to 8 percent of all people over age 65, and the rate doubles every five years. By age 85, up to half of all people suffer from these symptoms. In rare cases (when it's brought on by drug use or a hormonal imbalance, for example), dementia may be treatable; but more often than not, it's a worsening condition caused by disease or injury. The most common cause: Alzheimer's disease, which makes up roughly 70 percent of all cases.
Donna Davies, a care consultant with an Alzheimer's Association chapter in New York, recommends that families with a relative suffering from dementia think about the feelings they want to generate during the holidays and plan accordingly. "We can get carried away with gift-giving and gift-buying and going to parties, when often what we really want is to make a deeper connection with the people that we love," she says. "To do that with someone with dementia, we have to reduce our expectations of what they can cope with."
But adapting is not necessarily settling – it just requires some creativity. Deborah Shouse, whose new book "Love in the Land of Dementia" chronicles her experience helping her mother through Alzheimer's disease, knew the holidays could be tough. So, she prepared for them by crafting new traditions that resembled the old ones. Because she knew she would miss cooking with her mother, she simply had her join her in the kitchen, helping to cut up food when she could, and when she couldn't, just being beside her. She also lined up a friend for emotional support, saying: "I might have a meltdown over the holidays – can I call you?"
[Read: The Secret to Gift Giving.]
Given the added stress of the holiday season, it's critical that caregivers are extra sensitive to their loved ones' needs – as well as their own. That may mean asking family members for help or even requesting unconventional gifts – like making a meal or two or providing some relief duty to allow for much-needed personal time.
As for the person living with dementia, Struble suggests soothing and practical gifts or those that recall yesteryear: photo albums depicting some early memories, a pair of large, soft socks to soothe swollen feet or sturdy shoes, a bird feeder, fitness video or DVDs of relatable sitcoms like "The Golden Girls" or "I Love Lucy."