About four years ago, Madhavi Phadke, a philanthropy director in Westford, Massachusetts, noticed her mother, Chanda Bhawalkar, was withdrawing. She 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, Phadke said. She became agitated when visitors dropped by, a surprising response from someone who had always maintained a vibrant social life.
At first, Phadke thought these changes were just normal signs of ageing, but as things got worse, she took her mother for a medical evaluation. About two years ago, Bhawalkar was diagnosed with Alzheimer’s disease.
It gave 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, Maryland, whose wife, Bette, died in 2024 after several years with Lewy body dementia. Families are “left with someone you can’t recognise, 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
Accepting that a family member can no longer think clearly or remember things is among the biggest challenges. 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.
“Not only does it not work, but it often backfires,” Dr Noble said: Arguing or getting frustrated with a dementia patient can make them anxious or agitated, which can hasten decline and make caregiving more difficult.
It’s “far simpler for you and much better for your loved one if you adapt to their reality” by gently playing along with a delusion or forgiving their confusion, said DrIpsit Vahia, the chief of geriatric psychiatry at McLean Hospital in Belmont, Massachusetts, who treats Bhawalkar.
Bhawalkar lives at home with her husband and Phadke. Every night, they follow a consistent routine, watching short music shows and the Indian version of Who Wants To Be A Millionaire? since she can no longer keep up with movies. Instead of asking Bhawalkar open-ended questions, which can make her feel anxious, Phadke tells her mother about her day.
“We make these tweaks so that she feels like everything is normal, like her life is the same,” Phadke said.
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 Siegel. Questions can include what parts of their daily routine they’d like to preserve, whether they’d prefer to remain at home or move to an assisted living facility and if they’re comfortable with life support, feeding tubes or prolonged hospital stays.
BE A STRONG PATIENT ADVOCATE
Several families stressed that finding good medical care to manage dementia requires organization and persistence. Bhawalkar’s original geriatrician had a brusque bedside manner that made her nervous, so Phadke sought out a new doctor. She chose Dr Vahia in part because he spoke her mother’s native Marathi language and addressed her respectfully, which calmed her down.
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.
It’s also important to accept that doctors don’t have all the answers, Dr Prather said: How quickly dementia progresses depends mostly on its cause and the patient’s condition – but its trajectory is not always easy to predict.
Finding good long-term care also requires dogged advocacy. Siegel’s wife had always been good-natured and gentle, but as her dementia progressed she became more angry and often had to be physically restrained. After several years of caring for her on his own, Siegel placed her in a senior living centre that advertised as accommodating all forms of dementia. But it was ultimately unprepared for the violence and mania that came with her Lewy body. “I had to micromanage the facility all the time,” he said. He later moved her to a smaller facility, where she had much better care.
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.
“No one understands what a caregiver goes through,” Siegel said. To help relieve stress, he eventually found a therapist specialising in caregiving and visited group therapy sessions.
SAVOUR THE SMALL, GOOD MOMENTS
Some families described dementia as progressing in steps – plateauing for months or even years before the patient experienced a sudden decline and another plateau. Others said their family members worsened more precipitously and unpredictably.
“Every part of the dementia journey is transient,” Dr Prather said. “What you’re experiencing now is going to change.”
In the face of this uncertainty, families emphasised the importance of celebrating small wins and finding joy and humour wherever possible. Melanie Levy, who runs a fitness business in Sacramento, California, said her father, who lived alone and refused most help for his dementia, still enjoyed playing percussion and listening to records as he declined. Knowing he was “hosting a jazz club in his living room,” even for people who weren’t actually there, gave her “joy and comfort” because it meant he didn’t feel totally alone, she said. He also reconnected with some estranged family members because he’d forgotten his anger, she added.
Siegel remembers his wife teasing family and friends even late into her disease. In one moment of lucidity, she ribbed him for a pie he’d made a decade before, where he’d mistakenly swapped sugar for salt.
“You live for that moment,” Siegel recalled. “In the nightmare, there were, in fact, moments of clarity and humour, and occasionally my wife would reappear.”
By Mohana Ravindranath © The New York Times Company
The article originally appeared in The New York Times.
