Maggie Sullivan has come to know Alzheimer’s intimately. She was caregiver and advocate during the eight years her mother lived with the disease. For the past 30 years, she has facilitated caregiver support groups for the Alzheimer’s Association, learning from the experience of more than 300 members of those groups. The opinions she expresses here are her own. Maggie is also a writer whose essays and articles have appeared in the New York Times and elsewhere.
Going It Alone in a Job Much Too Big for One Person May 7, 2019 - When people develop dementia in the United States, we rely on their families to take care of them. And a family member, most often a spouse or a daughter, almost always does step up. Then, as a culture, we appear…
Dementia: The Greatest Caregiving Challenge of All February 13, 2019 - A man in one of the Alzheimer’s caregiver support groups I lead wrote the following in a note to me: We caregivers come into this job ignorant and unprepared but we accept the load thrust upon us. There is no training course but we try to do our best. 
How Much Do People with Dementia Understand? December 27, 2018 - In the small crowd at the Alzheimer’s fundraiser, I spotted Frederick, who attended one of the support groups I lead. I went over to say hello. He was with his wife, whom I had not met before.
At the Heart of Dementia: A Challenge to Truth October 11, 2018 - Alec, whose wife had Alzheimer’s disease, had heard that people in the later stages of dementia often ask for their mothers. Nevertheless, the day Hilary asked him, “Where’s my Mom?” Alec was taken aback. Because they had always been completely…
When Things Aren’t What They Seem July 20, 2018 - One day at the Alzheimer’s day program he attended, Herman suddenly got up and left the room. As he charged down the hall and out the front door, Wendy, the program’s director, ran after him calling, “Herman, stop!” She caught…
Dementia in Films: Getting It Wrong November 8, 2017 - Fiona, a woman in her 70s living with Alzheimer’s disease, announces to her husband, Grant, “We are at that stage.” She means the point at which she belongs in a nursing home. Her husband, like almost all family caregivers, finds…
Dementia in Films: Getting It Right September 14, 2017 - I loved the novel Still Alice because it was an accurate portrayal of Alzheimer’s disease. And the movie Still Alice got it right too.
What Good Are Support Groups? June 12, 2017 - This was Chester’s first time at our caregiver support group. A man in his 70s, he told us about his wife who has Alzheimer’s disease and has become anxious whenever he is out of sight.
Accepting Losses, Discovering Gains March 22, 2017 - After my mother came to live with me, I gradually took on more and more of her care. By the end of the first year I was doing what any Alzheimer’s caregiver does. I bathed her, helped her dress, handled…
Preserving Autonomy against the Odds January 27, 2017 - When the doctor diagnosed my mother with probable Alzheimer’s, he also told her, “I want you to stop driving.” He said her reflexes and judgment weren’t good enough. By that point in her disease, my mother had trouble following conversations,…
Does She Still Recognize You? November 11, 2016 - An acquaintance I ran into at the supermarket stopped me with that question. It was one I got frequently when my mother was in the later stages of Alzheimer’s. The question made me uncomfortable. It seemed intrusive coming from someone…
Adrift in Time September 22, 2016 - I was taking my mother to Maine to visit her brother. They had lived in New Jersey within a few blocks of each other their entire lives until, due to her dementia, she moved in with me.
When Behavior Speaks June 13, 2016 - I sat with my mother and her caregiver, Aliza, one afternoon in the Alzheimer’s unit of the nursing home. With my mother between us, Aliza and I chatted about the hot weather we had been having. All of a sudden…
Regarding Alzheimer’s May 19, 2016 - An empty shell. Doesn’t know who he is. Violent. Doesn’t recognize family members. Unable to communicate. The negative stereotypes and exaggerations of Alzheimer’s disease abound. Even the harrowing descriptions of Alzheimer’s meant to increase our sympathy—robs its victims of dignity,…
