If you or someone you love was diagnosed with Alzheimer's disease, would you want to know?
According to a new report from the Alzheimer's Association, the majority of Americans with Alzheimer's disease and other forms of dementia may not have a say in the matter.
Disclosing a Dementia Diagnosis
Only 45 percent of men and women with Alzheimer's disease and 27 percent of people with a non-Alzheimer's type of dementia have been officially told their diagnosis by their doctor, an analysis of data from more than 16,000 Medicare beneficiaries revealed.
"These disturbingly low disclosure rates in Alzheimer's disease are reminiscent of rates seen for cancer in the 1950s and ‘60s, when even mention of the word cancer was taboo," says Beth Kallmyer, MSW, vice president of constituent services for the Alzheimer's Association in a press release.
Now, nearly 70 years later, it's clear that cancer has lost much of its stigma. Ninety-three percent of people with the most common cancers—breast, prostate, colon and rectal, and lung—say their doctor gave them their diagnosis.
So what's preventing physicians from disclosing dementia diagnoses at the same rate?
Doctors usually cite several reasons for not sharing a dementia diagnosis with a patient or their caregiver. Diagnostic uncertainty often tops this list.
Accuracy of Diagnosing Dementia
Pinpointing the precise cause of an individual's dementia symptoms is no simple task. There are dozens of different types of dementia, though Alzheimer's is by far the most prevalent—accounting for as many as 80 percent of dementia cases.
Neurologists can diagnose Alzheimer's with about 90 percent certainty, according to Joseph Masdeu, M.D., Ph.D., Director of the Nantz National Alzheimer Center at the Houston Methodist Neurological Institute. But much still remains unknown about the condition. For instance, some experts believe that what we currently refer to as Alzheimer's may actually be a collection of multiple diseases that science has yet to separate.
Even if a doctor can get beyond the issue of an uncertain diagnosis, their desire to be upfront with a patient may be stymied by the fact that Alzheimer's (and many other forms of dementia) lack effective treatment options.
A study published in the International Journal of Geriatric Psychiatry found that insufficient treatment options was a primary reason that 25 percent of providers decided not to tell their patients about an Alzheimer's diagnosis.
However, some causes of dementia-like symptoms, such as a urinary tract infection or a thyroid condition, are curable, which is why many health care professionals encourage people with cognitive impairment to seek a diagnosis.
Sometimes it's the patient and their family who profess a desire to be kept in the dark about a diagnosis of Alzheimer's, often out of a desire to avoid the psychological turmoil and societal stigma of the condition. For their part, most doctors aren't in a hurry to add the heavy emotional burden of Alzheimer's onto the shoulders of patients and their families, for fear that it might lead to depression and thoughts of suicide.
Physicians also feel that they don't have the time or resources necessary in a clinical setting to offer patients with Alzheimer's and their families the proper support to cope with the news of a diagnosis.
Legally, a doctor doesn't have to disclose an Alzheimer's diagnosis to a patient or their family. Ethically, they should, unless the patient or family specifically says they'd rather not know.
The Benefits of Knowing a Dementia Diagnosis
In order for a person to make informed decisions about his or her health care—or the care of a loved one, if they have power of attorney—they need, first and foremost, to be fully informed.
While the news that you or someone you love has Alzheimer's is never positive, there are certain advantages that accompany an official diagnosis:
- A sense of certainty: Receiving an explanation for previously inexplicable memory loss and uncharacteristic behaviors can be a source of relief for people with the disease and their families. Rick Phelps experienced troubling cognitive symptoms for seven years before he was officially diagnosed with Early-Onset Alzheimer's disease, at age 57. For a long time, Rick's doctors attributed his impairment to depression and unresolved grief. "It was like a weight being lifted off my shoulders," Rick says of finally getting his diagnosis. "You have to accept this disease or you're doing yourself a disservice. Every day you're in denial is a day you've lost. Accepting it means you know what's coming and what you have to do."
- An opportunity to plan ahead: Perhaps one of the most often mentioned benefits of a dementia diagnosis is the ability for families to plan ahead—update wills and advance directives, appoint a power of attorney, take stock of their financial situation, etc. As Rick says, "Everybody's terminal. Knowing that I have X amount of years left gives me a leg up."
- An awareness for family and friends: Revealing an Alzheimer's diagnosis to friends and family can certainly be a difficult, double-edged endeavor. The stigma attached to the condition—fueled by fear and misunderstanding—is very powerful. But if families can approach the situation from a place of acceptance, there is an opportunity for growth and bonding for all involved. "Instead of it being the elephant in the room, you can talk about it," says Rick.
- An ability to seek treatment: While no drug has been proven to stop, reverse or cure Alzheimer's, there are several medications that have been shown to temporarily slow cognitive symptoms in some people Alzheimer's. A diagnosis can also give a person the ability to participate in clinical trials geared towards developing new Alzheimer's treatments.
Masdeu's recommendation? "The pros of getting a diagnosis greatly outweigh the cons. I would advise anyone who is concerned they might have Alzheimer's to get a diagnosis by a doctor experienced in this type of diagnosis."
Receiving an Alzheimer's diagnosis can exact a powerful emotional and psychological price from people with the disease and their families. Learning How to Discuss and Alzheimer's Diagnosis and understanding What Happens After an Alzheimer's Diagnosis can help families work through this process.