Soon after his wife was diagnosed with frontotemporal dementia, Bill Floyd consulted a neurologist who had been a member of his church. People with this illness don’t know they have it, the doctor warned. They don’t understand that anything is wrong.
This little-known yet common consequence of this kind of dementia, Alzheimer’s disease and other brain disorders is called anosognosia, and it leaves people unaware that they are compromised by illness.
Imagine someone who survives a stroke and is paralyzed on the left side of his body, but is convinced he can walk without assistance. A less extreme example: Someone with moderate memory deficiency gets lost on the road or has accidents, but thinks she is driving just as well as ever.
This is not denial, said Sandra Weintraub, a professor of psychiatry and neurology at Northwestern University. “It’s a lack of insight and awareness,” she said. “Everyone else around them is aware they’re not the same, and they are not.”
Sometimes anosognosia is selective: An aging parent may realise she has a problem with one kind of activity but is oblivious to other difficulties. But in other cases, the lack of self-awareness is more extensive. According to some estimates, up to 42 percent of people with early Alzheimer’s disease have symptoms of anosognosia. And as dementia progresses, the symptoms also advance, evidence suggests.
Trying to make someone with this problem understand that they have changed and need to accept new limits often is an exercise in frustration, Dr. Weintraub said. Reasoning and evidence make little difference to these patients.
Brain studies suggest that the lack of awareness may be linked to the deterioration of the frontal lobes, especially on the right side, which play an important role in problem-solving, planning, and understanding the context and meaning of experiences and social interactions. Some studies also point to atrophy in the temporal lobes.
“Really, as of yet, we have no idea what’s going on,” Dr. Weintraub said.
Mr. Floyd, 70, a professional photographer in Evanston, Ill., spoke publicly about his experience as a caregiver at a conference on frontotemporal dementia sponsored by Northwestern University that I attended late last year. “My wife never ever acknowledged she had this disease, and to bring it up was painful,” he told the audience.
Connie Floyd died in September at age 67. She was an accomplished woman, Mr. Floyd said in an interview: a director of children’s programs at her church for over 20 years. Theirs was a deeply satisfying marriage until July 2010, the first time he suggested his wife needed to see a doctor. For several years, close friends had been telling him privately that something didn’t seem right. And several months before she sought help, a physician who knew Mrs. Floyd well had confessed that he was worried she might have a brain tumor, an aneurysm or dementia.
There had been signs at home, times when Mrs. Floyd would seem to forget how to make the bed or would start talking when she and her husband were praying in bed at night. She forgot to hold a soup spoon steady while bringing it to her mouth and pushed her chair out several feet from the dining room table. When Mr. Floyd suggested she move in closer, she would push the chair to the side.
But when Mr. Floyd tried to raise his concerns with his wife, she was shocked. The problems weren’t significant, and there were explanations for all of them, she insisted. She couldn’t see what he was worried about and felt like she was being unfairly criticized.
From that day on, Mr. Floyd said, she saw him as her accuser. In prepared remarks for the Northwestern conference, he wrote:
For 42 years we discussed everything, sorrows, joys and concerns. In all those things, Connie was my partner and I hers. Suddenly, here we were facing the biggest challenge of our marriage and Connie was the one person with whom I couldn’t discuss it. One of the saddest and most frustrating parts of this journey was that we never became a team.
“She seemed to feel that if she could hide the symptoms, the disease wouldn’t be there,” he told me, adding that she didn’t want anyone to know about her illness. “I kept telling her this journey would be so much easier with other people at our side, but she just didn’t see it that way.”
Any time Mr. Floyd tried to point out her difficulties and offer assistance, his wife would take offence. “She couldn’t make the connection between her symptoms and herself,” he said.
How do you try to help someone in these circumstances? Mr. Floyd decided to confront his wife only when her safety or that of other people might be compromised. Otherwise, he would let things slide or take care of them on his own.
Mrs. Floyd’s condition took a sharp turn for the worse last spring, and by the beginning of September it was clear she was dying. Unable to swallow or talk, she was living in a nursing home and entirely dependent on others. Nonetheless, she looked alarmed and startled when her daughter suggested that Mrs. Floyd’s own mother would be waiting for her with open arms in heaven, Mr. Floyd recalled.
“Even at the very end, she had an absolute failure to recognise what was going on,” he said. Mr. Floyd was never able to say a real goodbye to his partner of 44 years, he said, a woman he loved with all his heart.