Lori Roberts’s father, who used to deliver the mail in Mitchell, S.D., has undergone startling personality changes. “He used to be very easygoing,” Ms. Roberts said. “Now he’s gotten kind of physical with my mom and my brother, pushing and shoving.” The other day, when her exhausted mother visited him in the nursing home he had recently entered — by sad coincidence, it was their 53rd wedding anniversary – he loudly insisted that she take him to Mexico, immediately.
Paul Smith’s father hallucinates. “He commonly sees a dog lying by the wall. Or a little girl,” said Mr. Smith, a sales manager in Port Byron, Ill. “He’ll see half-humans, half-animals. Or little stick men running around on the floor.” With hindsight, Mr. Smith sees how wrong he was, as his father deteriorated, to keep saying,“It can’t possibly get any worse than this.”
Neither Ms. Roberts nor Mr. Smith had heard of Lewy body dementia before their fathers were found to have it, a process that in each case took several years because even many health care professionals remain unfamiliar with the disorder.
Yet, “this is not an uncommon disease,” said Dr. James Galvin, a neurologist at NYU Langone Medical Center who has published extensively on the subject. He and other researchers helped the Lewy Body Dementia Association extrapolate from epidemiological surveys and come up with an estimate: About 1.3 million people — considerably more men than women — have Lewy body dementia, named for the scientist who identified these protein deposits in the brain.
You would never wish an Alzheimer’s diagnosis on anyone — yet it might be easier on caregivers like Ms. Roberts or Mr. Smith if their fathers had that far more common form of dementia. Everybody’s heard of Alzheimer’s; lots of people know someone who has it. Doctors better understand the symptoms. Family members can more easily find support groups and programs.
When your relative has Lewy body dementia, Mr. Smith said, nobody knows what you’re talking about. (It may help a bit that the Chicago mayor that Kelsey Grammer plays on “Boss” has it.)
Frequently misdiagnosed as Alzheimer’s or Parkinson’s disease or a psychiatric disorder — and its symptoms often overlap with theirs — Lewy body dementia poses a definite diagnostic challenge. Its victims are losing cognitive ground, but they are less prone to the short-term memory loss associated with Alzheimer’s than to problems with executive function: They struggle to handle complex tasks like grocery shopping. They often develop visuospatial problems and find it hard to navigate or perceive distances, so that they lose their way in familiar settings or misjudge distances and fall.
In addition, someone with a diagnosis of Lewy body dementia will have two of three other symptoms: Parkinson’s-like physical impairment (slowness, abnormal gait, rigidity) or hallucinations or the changes in attention and awareness known as “fluctuations.”
“People can appear drowsy or sleeping, have staring spells, think illogically and incoherently — and these episodes wax and wane, lasting seconds or minutes or hours. And they’re unpredictable,” Dr. Galvin said.
Lewy body dementia can also cause sleep disturbances in which people act out their unpleasant dreams. Or patients may have mixed symptoms. “I don’t fault physicians for misdiagnosing it,” Dr. Galvin added. “It’s not that easy.”
At a minimum, cognitive decline that doesn’t take the classic form of memory loss is a cue, he said, that you may not be dealing with Alzheimer’s.
Why does that matter, given that neither form of dementia is curable and that treatments may bring only modest improvements?
“There’s no way to repair the damage that’s been done” to the brain, Dr. Galvin acknowledged. “All you’re doing is slowing down the symptoms’ progression without changing the underlying disease.” Yet a variety of drugs — certain antipsychotics and stimulants, and some Parkinson’s and Alzheimer’s medications — can make life easier for patients and their families, at least for a while.
As important, people with Lewy body dementia can react very badly to certain antipsychotics and to some antinausea treatments.
Moreover, “if you give someone a wrong diagnosis, the family has no ability to plan,” Dr. Galvin said. Lewy body dementia seems to progress more rapidly than Alzheimer’s; most patients don’t live as long with it.
Less than three years ago, for instance, Mr. Smith moved his father, Jim, now 85, to an apartment near his home. But Jim Smith, deteriorating with horrifying speed, soon needed assisted living, then assisted living with dementia care, then a nursing home and, after some violent outbursts, another nursing home. Now he’s in hospice care.
“He went from being able to live marginally independently to being slumped in a wheelchair, completely lost in a sea of hallucinations and delusions,” Mr. Smith said. Drugs haven’t helped much, except to calm him somewhat.
The sheer onslaught of symptoms, the fast decline, the sleep deprivation are all particularly hard on family caregivers, even after they figure out what’s wrong. “Physically and emotionally, it starts to beat on you,” Mr. Smith said.
Unable to find a Lewy body support group nearby, he started one this summer. “I anticipated it would be difficult to get people to talk, but it hasn’t been,” Mr. Smith said. “People opened up.”
They wanted information, but they also sought the relief of being with people who understand. “It’s a very, very lonely existence,” Mr. Smith said.
Paula Span is the author of “When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions.”