When families struggle with dementia, this nurse is by their side

Mary Kent Splain always knew she wanted to be a nurse or a writer.

As a young girl she read avidly and volunteered as a candy striper at Novant Health Presbyterian Medical Center in Charlotte, North Carolina. She especially enjoyed spending time with older patients. She chose the nursing path, and many years later, hopes to narrate happier outcomes for people with dementia.

Splain, 51, is a nurse practitioner at Novant Health Neurology & Sleep, where she specializes in memory care. She sees people blindsided by an early onset diagnosis in their mid-50s and others who are well into their 90s.

There’s one thread that seems to run through patients of all ages. “Once you have a diagnosis, it becomes a line in the sand — life before dementia, and life as it is now,” Splain said. “I feel like I’m just walking the path with them. I try to help them make connections, and let them know what’s available.”

More than 5 million people in the U.S. have Alzheimer’s disease — the most common form of dementia — and the numbers are expected to rise dramatically as the baby boomer generation ages. There’s no cure for the disease, but there are promising signs that some medications, as well as exercise for the body and brain, can slow its pace.

To help patients and their families deal with what can seem a devastating diagnosis, Novant Health is in the process of establishing a Memory Care Clinic in Charlotte.

‘I don’t want to look old’

On a recent morning, Splain met with a 79-year-old woman who first began exhibiting forgetfulness and “off behavior” in2017. Her daughter, Kate Rubsam, brought her to the Novant Health Neurology clinic, where testing showed she had early-stage dementia. Her neurologist, Dr. James Battista, recommended that in addition to seeing him, they follow up with Splain.

At their second appointment, the three women greeted each other warmly and chatted together comfortably in an examining room. Splain asked about their recent vacation to Florida, and smiled when the mother said how much she enjoyed Disney World.

Then came a series of gentle questions, first about current medications, and then about her memory:

Was she feeling more forgetful since last time? No. Is she still sewing and cooking? Yes. Is she having any balance issues? Sometimes. Does she think a cane might help? The mother shook her head vehemently. “I don’t want to look old,” she said.

As the discussion continued, a few things became clear. The mother still grieves the loss of her husband and her own mother. She also misses her old Florida community, where like her, many speak Spanish as their first language.

“I don’t want you to worry about your memory because you’re doing well,” Splain said. “I’d like you to get out and get some sunshine. I think what would also be good is more socialization. I think in your case that may be a lot more valuable than medication.”

Splain also suggested that the mother talk to a counselor: “Loss is very hard,” she said. “If you’d be willing to try grief counseling, I think that could help.”

Splain said she’d contact Hospice, which offers free grief-counseling and has Spanish-speaking counselors and chaplains. The mother hugged Splain as she left the appointment.

Rubsam, a patient services coordinator at Novant Health, sees positive results from her mother’s care.

“We’re trying to nip it in the bud because the better care she gets now will only help her in the future,” Rubsam said. “I want to make sure she’s happy, and that she feels useful, and that she feels wanted for as many years as she has left.

“Mary Kent is phenomenal. She’s a very genuinely caring person, and she’s very, very smart. I feel very confident that my mother is getting excellent care…”

‘So many sweet moments’

Splain has spent most of her nursing career specializing in palliative care. On a personal level, she took care of her own mother who suffered from dementia before her death, and also had an aunt and uncle with the disease.

She says she relishes her time with her patients. “I love older people, they have so much wisdom. I have such respect for them and I have so much to learn from them.”

Splain says her biggest goal is to offer patients and their families education and support so that they can enjoy the time they have. That includes steering them toward support groups and other resources such as respite care assistance.

She also encourages healthy lifestyles. Some research shows that physical activities such as walking and mental pursuits like reading, doing crossword puzzles or learning a new hobby can boost brain function. She encourages patients to socialize rather than isolate themselves. And while they’re able, she asks them to talk frankly to their families about their wishes for care at the end of their lives.

“Many families are in shell-shock, they aren’t prepared for this,” Splain said. “If I can help patients earlier, to be prepared and to have a plan, maybe there wouldn’t be so much grief.

“It’s something we’re so fearful of, but I’ve seen so many sweet moments. There’s still dignity, and there’s still joy in life. Eat the ice cream, go on the walk. Just keep living and enjoying life because every moment we have is precious.”