But it's hard for doctors to know whether it is dementia or Alzheimer's, and experts disagree on whether that matters. Some doctors, McIntosh included, said a definitive diagnosis may not make that much of a difference. But others, including the
One of the biggest challenges is getting a diagnosis beyond dementia, said
A diagnosis of dementia is like a diagnosis of cancer. It doesn't necessarily tell you what kind it is or where it is.
"We can provide all this high level and intensive care for this man, yet if he had Alzheimer's and needed dentures, insurance wouldn't cover that."--
Patients are often afraid to find out if they have the disease. Without a cure and a bleak outcome, it's scary, Osthoff said.
"They might not self-advocate out of fear of knowing what it is," Osthoff said.
Self-advocating can be important in getting a diagnosis beyond dementia.
No single test exists for the disease, like with diabetes or heart disease. It requires a diagnosis of exclusion, meaning doctors must eliminate all other possibilities before labeling it Alzheimer's.
That extra time can put a strain on doctors.
It can be expensive for health care providers.
"I get to spend an hour with a patient," Riggs said. "That's almost unheard of. In a private practice setting, you'd go broke if you spent that much time on each person."
It can also be expensive for patients if their insurance doesn't cover the disease.
"The biggest drawback is that all the definitive diagnoses are considered experimental by
Riggs said he was once asked to consult on a man who was about 90 years old. He had cancer. He had brain radiation. He was in and out of a nursing home. One day, he had a blood clot and wouldn't wake up.
"We can provide all this high level and intensive care for this man, yet if he had Alzheimer's and needed dentures, insurance wouldn't cover that," Riggs said.
Riggs recommends patients ask to see a specialist if their doctor stops at dementia or if the patient isn't sure of the diagnosis.
"No good doctor should ever be insulted by a request for a second opinion," Riggs said.
There are some treatments available, though Riggs admits they aren't great.
"They don't cure the disease, they don't arrest the disease but they slow it down," Riggs said. "(Patients) should be offered what's available."
Some treatments that would help with one kind of dementia make other kinds worse, Riggs said.
It matters for the prognosis, too. A blanket diagnosis of dementia, much like a cancer, doesn't tell people how fast the disease will spread and take effect. Having a more accurate timeline helps families make better plans for care, Riggs said.
"An accurate diagnosis also has a profound impact on eligibility for drug trials," Riggs said.
McIntosh doesn't think a definitive diagnosis is necessary. Amyloid protein build up in the brain usually indicates Alzheimer's while tau proteins indicate other types of dementia. If he sees amyloid build up, he's confident in an Alzheimer's diagnosis.
"We say it clinically fits," McIntosh said.
Since there's no cure and the prognosis doesn't get better, McIntosh doesn't think pushing for more tests is advantageous.
Quality of life
Though there's no cure, an early diagnosis helps with quality of life for both the patient and their loved ones, Osthoff said.
Folks eventually lose the capacity to make decisions on legal and financial matters. With Alzheimer's being one of the most expensive diseases, planning and understanding care needs matters, Osthoff said.
People need to know what coverage they have, Osthoff said. People often think they're set with
An early diagnosis also allows a person to be involved in decisions about their own care, Osthoff said. It allows caregivers a chance to seek support as well.
Furthermore, if people know what to expect, they can make the most out of the time they have, Osthoff said.
"Someone in the early stages can have a high quality of life," Osthoff said. "They can socialize, make a bucket list or play the sports they love. They can do things they might not enjoy as much later."
"We're moving forward with research," McIntosh said. Brain imaging increases the accuracy of the diagnosis.
There are other studies directed at amyloid protein build up in the brain, Riggs said.
"Everyone with Alzheimer's has abnormal amyloid protein build up but not everyone with abnormal protein build up has Alzheimer's," Riggs said.
Doctors sometimes struggle working with Alzheimer's patients because it's a disease they can't cure, Riggs said. They feel like there's nothing they can do about it.
"But," Riggs said, "comfort, solidarity and reassurance are not nothing," quoting
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