Families and experts share their best advice for navigating and coping.
About four years ago, Madhavi Phadke, a philanthropy director in Westford, Mass., noticed her mother, Chanda Bhawalkar, was withdrawing. Ms. Bhawalkar had been an avid reader and talented cook who walked daily and regularly texted with her friends back home in Maharashtra, India. But in her late 70s, she began spending more time alone in her room and seemed aloof and often bored, Ms. Phadke said. She became agitated when visitors dropped by, a surprising response from someone who had always maintained a vibrant social life.
At first, Ms. Phadke thought these changes were just normal signs of aging, but as things got worse, she took her mother for a medical evaluation. About two years ago, Ms. Bhawalkar was diagnosed with Alzheimer’s disease.
It gave Ms. Phadke clarity, but also feelings of deep sadness and helplessness, she said. “It’s almost like today’s going to be the best day for the rest of her life,” she remembered thinking. But she also wanted to “make the most of what we can” with her mother’s remaining time.
It’s difficult to know how to proceed when a family member is diagnosed with dementia. Clinicians suggest sorting out logistics early on: appointing a trusted person to make medical decisions on the family member’s behalf, planning future care and writing financial directives. But you also have to prepare for the emotional weight of watching a loved one lose pieces of themselves.
“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.