by Mohana Ravindranath for the New York Times
“It’s the mental equivalent of death by a thousand paper cuts,” said Don Siegel, of Silver Spring, Md., whose wife, Bette, died in 2024 after several years with Lewy body dementia. Families are “left with someone you can’t recognize, except in very brief moments.”
The New York Times asked dementia specialists and seven families who have faced the disease to share advice for moving forward after a diagnosis.
Adapt to your loved one’s new reality. Families often try to reason or argue with loved ones because it’s hard to go along with untrue facts and outlandish assertions, or they may be clinging to a false hope that correcting the person will help them recover their cognitive abilities, said Dr. James Noble, a dementia specialist at Columbia University Irving Medical Center and the author of “Navigating Life with Dementia.”
Ask the tough questions early on. As soon as possible after a diagnosis, families should talk to the dementia patient about how they want to live out their days, including their medical preferences for when the disease progresses, said Dr. Christina Prather, the clinical director of the George Washington University Institute for Brain Health and Dementia, who treated Ms. Siegel.
Be a strong patient advocate. To make the most of limited time with specialists, families should come to appointments with a list of questions they’d like to address, Dr. Prather suggested, and ask for a follow-up call if there’s more to cover.
Seek out support. Dementia care typically lasts years after diagnosis, and caregivers have “a long course” ahead of them, Dr. Noble said. It also tends to be psychologically stressful, as the caregiver watches their loved one slip away. Seeking emotional support from other dementia caregivers is critical, as is staying on top of your own medical needs, he said.
Savor the small, good moments. In the face of uncertainty, families emphasized the importance of celebrating small wins and finding joy and humor wherever possible.