Jennifer Fink noticed that her mother Diane was in the early stages of dementia during a Thanksgiving meal around 2005. “I took a bite of her homemade pumpkin pie and realized there was no sugar in it,” says Fink, 58, a podcast host and motivational speaker in Auburn, CA. Diane seemed unaware. “I assumed she was just distracted, as she'd made a meal for eight people. But in hindsight, that was when she began to decline.”
The holiday season normally is a time of joy and togetherness. But for some people, it may become filled with worry if a loved one shows signs of a neurologic condition such as dementia.
“It can be tricky,” says Marwan Sabbagh, MD, FAAN, a behavioral neurologist at Barrow Neurological Institute in Phoenix. While it may seem like a loved one is confused or repeating themself, it may also be that they can't hear well or are simply overwhelmed in a new social situation, he adds.
There are ways to help people spot potential signs of neurologic trouble, though, Dr. Sabbagh stresses. Here are some clues to look for and ways to broach the topic with loved ones to ensure they get the care and support they need—during the holidays and all year long.
Spotting the Symptoms
The first clue that Annie Lulloff had Parkinson's disease was when she lost her sense of smell on a Christmas Eve in the mid-1970s. Since she was just 36, her husband Rolf, an orthopedic surgeon, wasn't too worried, especially when a brain scan didn't reveal anything concerning. But over the years, she began to develop tremors that forced her to give up tennis and limited her driving. Finally, at 49, she was diagnosed with Parkinson's on New Year's Eve.
“We both walked out of that doctor's appointment in tears,” recalls Rolf, 81, co-founder of the Brain Center of Green Bay, a support center for people with neurodegenerative diseases and their caregivers in Green Bay, WI. “Annie melted down. She said, ‘My life is over. I'll never get to see our kids getting married or meet our grandchildren.’ I told Annie how much I loved her, and I always would. We went home, I quietly cancelled our New Year's Eve plans, and we spent the evening holding one another.” Despite her diagnosis, Annie went on to live another 45 years, passing away in February 2021.
Most of the time, the early signs of neurologic diseases like Alzheimer's or Parkinson's are so subtle that they can get missed during the hustle and bustle of the holidays, says Stephanie Towns, PsyD, a neuropsychologist at Yale School of Medicine in New Haven, CT. “The most concerning signs to watch for are any signs of functional change, where a person struggles to do something that they used to do on their own before, like work their TV,” she explains. Other things to watch for include:
- Memory problems. Occasionally forgetting someone's name, or even mixing up the names of grandkids, is a typical age-related change, but it should not happen constantly. And while it's okay to accidentally call someone by the wrong name, “it's definitely more worrisome if Grandma doesn't remember which grandkid belongs to which of her children or forgets that Aunt Marge is married to Uncle Bob,” Dr. Sabbagh says.
- Muscle weakness or numbness. Any unexplained weakness, tingling, or numbness in the arms, legs, hands, or feet could indicate a nerve or spinal cord issue.
- Balance problems. Trouble walking steadily or maintaining balance could indicate someone has a neurologic condition like Parkinson's disease.
- Confusion. Older adults may struggle to remember the exact day of the week, especially around the holidays if their schedule has changed, Dr. Towns says. But if they generally seem confused as to where they are and why they're at a family gathering, they should see a doctor.
- Mood or behavioral changes. “Older adults often tend to develop very specific ways of doing things, and they can become irritable if their routine changes,” Dr. Towns says. But if this irritability persists even when they return home, in their normal routine, it could signal underlying changes in their brain function.
How to Bring Up Concerns
It's easy to feel disconcerted if you haven't seen a loved one in months, or even years, and then find them out of sorts at a family gathering. Dr. Towns suggests talking to others closer to them first to get more information.
“A straightforward, ‘Grandma seemed more confused this year than last year at the annual holiday dinner. Have you noticed this?’ is often the best way to go,” she says. After all, her confusion may stem from something non-neurologic, such as not wearing her hearing aids or having too many cocktails at dinner.
Monica Parker, MD, a neurologist at Emory School of Medicine in Atlanta, recommends spending time with that loved one outside of a holiday family gathering next. “If you see anything that concerns you, write it down, along with how often it happened and when you observed it,” she says. Once you've done that, ask someone else—ideally, a person who lives with them or someone who sees them regularly—if they have noticed the same thing. If they have, you may want to help your loved one make an appointment with their medical provider.
“If you bring it up to the patient themselves, they may become defensive,” Dr. Parker points out. “Most likely, they don't realize there's a problem.”
Instead, accompany them to their doctor appointment and send a message to their physician, either via email or through an online health portal, to alert them to your concerns. “Otherwise, you risk getting into a drag-down fight in their doctor's office, which isn't helpful for anyone,” Dr. Parker says.
Finally, don't delay. It can be hard to spend enough time with your loved one to fully document what's going on. But if you notice a concern during the holidays, try to discuss it with them within a few weeks of noticing the changes and encourage them to seek medical care. “It's easy to brush it under the rug and say you'll re-evaluate in six months,” Dr. Parker says. “But if you wait too long, something bad will usually happen.”
Fink agrees. Although her mother wasn't officially diagnosed with Alzheimer's disease until 2011, the signs appeared much earlier. “She was great at masking, especially since she was so social,” Fink says. “She'd breezily wave away a question she couldn't remember the answer to, so none of us realized the extent of her memory troubles.”
When More Help Is Needed
When Herbert Sandmire began to show signs of dementia at age 85, he didn't resist seeing doctors to get a diagnosis. A retired obstetrician, he was comfortable with other physicians and already was under a neurologist's care since having a small stroke several years earlier.
But once Herbert began to require more care, his family ran into difficulties. “He only wanted my mother to help him, but she was worn out and needed a break,” says his son, Kevin Sandmire, MD. While he lived about five minutes away from his parents in Green Bay and helped as much as he could, he was juggling his primary care practice and a family of his own.
The situation abruptly resolved when Kevin went on vacation and his sister flew from Idaho to Wisconsin to help with their father. “Since she visited more infrequently, we decided it was better to make her the ‘bad guy.’ She told my parents she was hiring help and there was nothing they could do about it,” Kevin recalled. “My father was furious, but she was already back on the plane to Boise.”
The siblings brought in an outside caretaker very gradually. They started with two to three hours a week and slowly increased the amount of time until it eventually became 24 hours a day.
It can be overwhelming for someone with a neurologic condition to accept the fact that they need more help, says Nathaniel Chin, MD, medical director of the Wisconsin Alzheimer's Disease Research Center in Fitchburg. He recommends starting slowly.
“Suggest something simple, like having someone come in to cook for them and clean the house,” he says. “If they resist, you can gently point out to them that there's very little food in their fridge, or they have a lot of clutter in the house and you're worried that they will fall.” As your loved one gets used to having a caretaker in the house, you can gradually increase the worker's hours and responsibilities.
If you still run into roadblocks, Dr. Sabbagh suggests making an appointment for both of you to visit their neurologist. “Most offices have a social worker on staff who can schedule a home health assessment, where a trained professional such as a nurse comes to the house to evaluate their health and living situation,” he says. You can also contact your local area agency on aging for help and advice.
“Oftentimes, adult children fly in from out of town and want to solve all of their loved one's problems over a long weekend,” Dr. Sabbagh says. “But usually, patients need much more time to come around to the idea of a home health aide, or even moving into more long-term care like assisted living.”
Thankfully, most people come around. While Fink's mother was incredibly resistant to moving into a memory care facility, once she got there in 2018, she thrived.
“For the first six weeks, she was so mad that she was there she refused to speak to me,” Fink remembers. “Then one day, I showed up only to find out she'd taken a bus to an outing with some of the other residents, something she'd never have done while she lived at home alone.”
Fink's mother befriended two other women, both also named Diane, and in the last year of her life, one of them accompanied her to the family Thanksgiving gathering. “It was so amazing that she found another woman to bond with her who understood her, thought like her, and accepted her for who she was,” Fink says. “It made her last Thanksgiving something that was extra special and wonderful, both for her and for us, her children.”
Read More
Four Ways to Manage the Holidays When a Loved One Has a Neurologic Condition