Paula Spencer Scott
“You don’t look like you have Alzheimer’s,” people tell Terry Montgomery. “Well, that’s like saying, ‘You don’t look like an alcoholic,'” she says. “I’m just not as cognitively sharp as I used to be.” Montgomery, 63, was diagnosed with young-onset (also called early-onset) Alzheimer’s five years ago.
“I don’t look any different or talk different. I’m not deaf, so you don’t have to shout. I understand English,” adds the retired businesswoman of Duluth, Ga., who’s now on the advisory board of Dementia Action Alliance. “I hate the stigma placed on us because people don’t know any better. Once I met others like me, it took away my fear and phobia.”
People diagnosed with Alzheimer’s or other forms of dementia often hear outdated or simply wrong beliefs about their conditions, says Mayo Clinic behavioral neurologist Dr. Jonathan Graff-Radford. He tackles such myths and more in the new “ Mayo Clinic on Alzheimer’s Disease and Other Dementias ” (written with Angela Lunde), a complete revision of a 2013 guide by Dr. Ronald C. Petersen. The update adds personal stories from people with dementia and their care partners as well new sections on brain health and living well with cognitive disorders.
Among the misconceptions it’s time to toss:
Myth: Dementia is a problem for the old
Not exclusively, as Montgomery, who got diagnosed at 58, knows. Almost a quarter million Americans are living with young-onset Alzheimer’s (developing symptoms before 65), which is why the Mayo book now includes a section on it.
Another type, frontotemporal dementia, typically strikes between 40 and 65.
“A lot of information focuses on those in their 70s. But people in their 40s, 50s and 60s may still work or have dependents living in the house, with different concerns,” Graff-Radford says.
Myth: If you have memory loss, you probably have dementia
It’s more apt to say, if you have memory loss, you’re human.
Everybody forgets things; young adults blame sleep or stress and move on. Older adults are more apt to make the leap right to disease.
“As folks age, it’s natural to have forgetful moments — losing your keys, trouble connecting a name with a face, coming up with a word on the spot,” Graff-Radford says. “There’s a cognitive spectrum, a wide continuous range with many shifting levels between just ‘normal’ or ‘abnormal.'”
About 10% to 15% of cases of mild cognitive impairment (changes in thinking and memory beyond what would be expected by aging alone) transition to dementia every year. Dementia is daily memory loss that impacts the ability to function independently, like cook or balance the checkbook. Even this kind of memory loss can have reversible causes, including medications and sleep apnea.
“You don’t go right from memory trouble to dementia,” Graff-Radford says.
Myth: Alzheimer’s and dementia are the same thing
“If I tell someone, ‘You have dementia,’ they say, ‘But not Alzheimer’s, right?'” Graff-Radford says. “Or if I say, ‘You have dementia due to Alzheimer’s disease,’ people look confused and ask, ‘What’s the difference?'”
Dementia, he explains, is the umbrella term for a syndrome of memory loss and other cognitive changes that interfere with everyday life. Alzheimer’s is the most common type of dementia. Other types of dementia include frontotemporal degeneration, Lewy body dementia, and vascular cognitive impairment.
Myth: People with dementia can’t learn new things
Actually, people living with dementia can continue to learn new routines, skills and habits, Graff-Radford says, thanks to procedural memory, a type of long-term automatic memory that tends to be preserved well into the course of the disease.