Dementia experts’ advice: Don't let dread of what's to come overshadow today

Story by Michele Munz

Those who care for people with progressive forms of dementia such as Alzheimer's disease often describe it as slowly losing someone. Their loved one is still there, yet unrecognizable.

Many families' thoughts turn to this grim future upon getting a diagnosis, said Julie Whitley, a social worker at the Memory Diagnostic Center at Washington University School of Medicine. Whitley helps connect newly diagnosed patients with support services through the Alzheimer's Association.

“I immediately start talking about grief and loss, because that is what this is,” Whitley said, “and anxiety, which is avoidance of discomfort and the unknown.”

Some patients tell her they insist on going into a nursing home as soon as they can't care for themselves. They don't want to burden their loved ones. They don't want them to worry. On the flip side, she has patients determined to avoid a facility and hope they can handle anything that comes their way.

To help, Whitley says she starts with questions: What kind of mom were you? What kind of dad? The answer is almost always the kind that did all they could for their child, who went to every ballgame or recital, who taught them how to fix a car or cook, who cared more than anyone.

Children want to return that unconditional love, she explains.

“I let them know that they love you so much, they want to do this,” Whitley said. “I try to create comfort in letting them know they are supported though this. They are not all alone.”

While it is important to discuss people's wishes while they can, it is also important to not live with dread, she added.

“If we start to take up residence in that emotion, in that anxiety, then we are missing that present moment when they do recognize you, that you do have with them,” Whitley said.

Cheryl Kinney, senior director of clients services with the Alzheimer's Association Greater Missouri Chapter, helps families through what can be a long grieving process as each ability slips away.

“She can't change. We can't convince the person with Alzheimer's that her son is not her husband, but we help people cope,” Kinney said. “We help them see that the person is still the same person on the inside.”

Kinney helps find new ways to connect through whatever might bring happiness: reading a book aloud, sharing music, holding hands or watching birds at a feeder.

“I help them communicate in a different way, deal with difficult behavior and cope with loss,” she said.

Whitley said the energy each person gives is important.

“If they are smiling and engaging you in a way that makes you feel joy in that moment, that's what is important,” she said. “If you are anxious and sad because they don't recognize you, then that's what you are bringing to them. Even if they don't recognize you, they can still bring you joy.”

Michele Munz has been a reporter for the St. Louis Post-Dispatch for 20 years, the past nine covering health and medicine. As a health reporter, Munz has won awards for her coverage of midwifery care, an experimental treatment for ALS and the opioid epidemic. She was the St. Louis Newspaper Guild’s 2015 Terry Hughes Award winner.

Christian Gooden has been with the Post-Dispatch since 1999. He is a native of University City and graduate of Cardinal Ritter College Preparatory High School. He earned a degree in journalism from Morehouse College in Atlanta, Ga. He has worked at The Atlanta Journal-Constitution and the Milledgeville (Georgia) Union-Recorder.

Cristina M. Fletes is a staff photographer and videographer at the St. Louis Post-Dispatch. She received a bachelor of fine arts degree in studio art from Louisiana State University in Baton Rouge and a master's degree in photojournalism from the University of North Carolina at Chapel Hill.

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