"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People diagnosed with Alzheimer's or other forms of dementia often hear outdated or simply wrong beliefs about their conditions, says Mayo Clinic behavioral neurologist Dr.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 as new sections on brain health and living well with cognitive disorders.
Among the misconceptions it's time to toss:
Dementia is a problem for the old
Not exclusively, as Montgomery, who was diagnosed at 58, knows. Almost a quarter of a 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 ages 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.
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.
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.
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.
Motor memory, aka "muscle memory," can preserve ingrained abilities (ride a bike, tie a shoe) and through repetition, aid the ability to pick up new ones (painting, dancing, trying new exercises). Dementia doesn't shut down every thinking skill involved in learning.
People with dementia lose the ability to enjoy themselves
"Nothing could be farther from the truth," Graff-Radford says. Very few patients are diagnosed so late that there isn't plenty of their same pre-diagnosis life ahead.
"We always ask patients, 'What are the things that bring you joy?' It's critical to try to enjoy usual activities, realizing you may need to make modifications," says Graff-Radford. A gardener may need to use photos to help remember plantings or a bridge player could have someone else keep score, while finding the same pleasure in the activity.
"I'd say dementia teaches you to enjoy life," adds Montgomery. "All the filters, the things I was afraid of, are removed when you focus on the present moment."
To diagnose Alzheimer's, get 'the Alzheimer's test'
There's no single diagnostic test for Alzheimer's — not yet. (No, those brief cognitive screens that ask you to draw a clock can't tell you if you have dementia.)
At Mayo, as elsewhere, doctors evaluate possible dementia by considering symptoms, medical history and relatives' perceptions. Mayo staffers also perform several kinds of neurological tests to check cognitive functions, and typically use blood tests and brain imaging to rule out other causes.
"There have been a lot of breakthroughs recently in terms of tests to measure the toxic proteins that build up in the brain through PET scans and spinal fluid, or now plasma as well," Graff-Radford says. Given that Alzheimer's starts in the brain 15 or more years before symptoms appear, these biomarker tests may one day identify disease much earlier.
Dementia makes people more violent
Aggression is far from universal. "Everyone's journey is very different, with symptoms that depend on them as individuals, on the setting they're in and on the anatomy of the disease," Graff-Radford says.
As "Mike," a 52-year-old Mayo patient quoted in the book, says, "Please remember that dementia is a disease, not a personality trait."
Nothing can be done about it — so why find out?
The sooner a diagnosis is made, the more opportunity for treatment, Graff-Radford says.
Current therapies, including medications, can't reverse symptoms but may slow progression. Coexisting conditions that may make dementia worse, from vitamin deficiencies to sleep apnea, can be treated.
While cognitive changes are still mild, a person can also plan for how and where they'd like to live as symptoms progress. Many of Graff-Radford's patients choose to emphasize relationships and cultivating a sense of life purpose, he adds.
Far from being an exercise in futility, finding out the cause for concerning symptoms is "empowering," Graff-Radford says. "Having dementia is just one part of who I am. It does not define me," says "Dale," another Mayo patient. "I can enjoy today and what I have now."
This article originally appeared on NextAvenue.org.