Alzheimer’s Diagnosis Rarely Disclosed to Patients

A report released by the Alzheimer’s Association found that only 45% of people with Alzheimer’s disease had been told of their diagnosis. While many doctors may be trying to protect their patients from the devastating diagnosis, their non-disclosure is more harmful than good.Alzheimer's Diagnosis Rarely Disclosed to Patients

Learn more about this report and what a non-disclosed diagnosis can mean for someone living with dementia.

Majority of Patients Not Told of Alzheimer’s Diagnosis

A study conducted by the Alzheimer’s Association found that only 45% of participants in their study had been told they had Alzheimer’s by their doctor. The Alzheimer’s Association investigated the lack of a prompt diagnosis after hearing many stories of people not being told of their disease until it had progressed significantly.

To do so, researchers analyzed Medicare claims data from 2008-2010 to find how many people had been treated for Alzheimer’s in that time period. That data was then compared to patient responses in the Medicare Current Beneficiary Survey. The survey is used by the United States Centers for Medicare and Medicaid Services on a continual basis and tracks the effectiveness of Medicare coverage.

On the survey, patients were asked, “Has a doctor ever told you that you had Alzheimer’s disease?” Only 45% of people who received Medicare funded treatment congruent with an Alzheimer’s diagnosis responded that they had been told by a doctor they had Alzheimer’s.

Researchers also noted that over 90% of people with breast cancer, colorectal cancer, lung cancer or prostate cancer had been told of their diagnosis.

Far-Reaching Effects of an Undisclosed Diagnosis

While many doctors may be trying to protect their patients from knowing they are living with an untreatable and incurable disease, their non-disclosure may be doing more harm than good.

Keith Fargo, director of scientific programs and outreach for the Alzheimer’s Association, believes that people living with Alzheimer’s who are not told they have the disease are robbed of the chance to plan for their future before faculties become too impaired to do so. Fargo stated:

“We believe patients have a right to know that they have this progressive and fatal brain disease. Telling the person with Alzheimer’s the truth about their diagnosis and prognosis should be standard practice.”

Many doctors who fail to give an Alzheimer’s diagnosis claim that they do not want to cause emotional distress. Other commonly cited reasons for not disclosing a diagnosis included a lack of support services, not enough time to discuss treatment options and the stigma that still surrounds the disease.

Beth Kallmyer, vice president of constituent services at the Alzheimer’s Association, likened the lack of diagnosis to a cancer diagnosis in the 1950s or 1960s saying:

“Cancer was called the ‘c-word.’ It didn’t get talked about in doctors’ offices. It certainly wasn’t talked about in the general public. That’s all changed now, and if you don’t remember that, you can’t even imagine how it was back then, and it is that way now for Alzheimer’s disease. People are feeling like they can’t talk about it, and we need to change that.”

Was your loved one told of their Alzheimer’s diagnosis in a timely manner? Share your story and thoughts with us on this study in the comments below.

Related Articles:

Please leave your thoughts and comments

  • Vicki

    No my mother was not told, even when I told her doctor what was going on with her memory and everyday living habit, he still would not tell her. It would have helped tremendously. Then I could have had a disscussion with her about her care. Things would have possibly made since to her, maybe. We will never know.

  • zuzu petals

    I think it’s interesting that the people who were asked if their doctor told them they had Alzheimer’s, had Alzheimer’s. How many of those people HAD been told and didn’t remember? How many of them had family members who had tried for months or years to get them to a doctor for a diagnosis that they didn’t believe or accept, so that even though they were now taking the meds for Alzheimer’s, they were being told it was for “a memory problem” or “to help you think better” or “so you don’t forget”. My mother in law was told many times that she had Alzheimer’s, but that meant nothing to her. Once while we were on the way to the doctor, she asked, “Now where are we going?” “To the doctor.” “What do I see him for?” “Your memory.” “He isn’t doing a very good job, is he.?”, then we laughed really hard at her joke, that wasn’t a joke. She knew she had a problem, but not what it was, just that she sometimes didn’t remember things. I don’t put much stock in this survey.

    • Linda

      My mother was also told, several times that she has Alzheimer’s, and she doesn’t remember, just like she will say she doesn’t have heart problems even though she has had bypass surgery. I agree with you about how valid the survey is. If they asked the patient, family member, and doctor, then I would find it more valid,

  • Linda Morse

    Even when family members are with the person Doctors may be reluctant to give the diagnosis. We have been fighting for years for dementia awareness. What gives them the right to withhold this critical information. You do not neglect to tell someone with cancer or any other terminal disease that it is diagnosed. Early diagnosis and treatment care planning are essential to living well with dementia based diseases and assisting people to plan for the future. Power of Attorney guardianship management of finances all essential steps. There are over 289 neurological disease that have dementia as a component They are all terminal diseases as identified by WHO. We need to stop hiding our heads in the sand and face the realities of dealing with these diseases. The word malpractice has a magical effect on obtaining compliance from the medical profession. If they are not sure send people to a Geriatric specialist. Early diagnosis would have meant the world to my Dad’s quality of life and we would not have spent years in the darkness where no one would listen to what we were saying. Doctors are people with a medical degree not super human beings they do not have the right to withhold critical information from family and the patient.

  • Linda Buytendorp

    When my husband could no longer deny that he had a memory problem we sought help from a Neurologist. He ordered all of the proper tests and immediately put him on Aricept and added Namenda just six weeks later. The word Alzheimer’s was never mentioned and when we point blank asked if it was Alzheimer’s we were told he wouldn’t make that diagnoses. It was like the doctor was in denial and we were more than ready to accept any diagnosis. The truth was we needed help, behaviors were going on and neither of us knew how to respond to them, this Neurologist didn’t even have a pamphlet in his office on Alzheimer’s. I learned of the Alzheimer’s Association and reached out to them. Next I got my husband an appointment at a Memory Clinic where after just one appointment he was diagnosed with 90% Probable Alzheimer’s. With a real diagnoses I was able to connect with organizations and support groups which changed our lives for the good. We got all of our legal affairs in order while he could still make his wants known and our everyday life became much better because I became educated in how to care for and respond to an Alzheimer’s patient. The original doctor did us no favor by putting off giving us a diagnosis or referring us for help.

    • Donna

      I feel the same way Linda. My brother passed away three months ago from complications of Alzheimer’s. He was 62 years old and was experiencing symptoms since he was 49. My brother’s doctors never gave him a proper diagnosis. His psychiatrist was the only professional that told us he had a degenerative brain disorder. I almost had a nervous break down trying to understand and care for his needs. Special organizations and support groups are so important. If my family and I knew he had Alzheimer’s, maybe we would of reached out to these groups for help and to learn about the progression of his disease. My family and I just received my brother’s autopsy report yesterday. Principal Diagnosis:
      Senile plaques in cortical areas and in hippocampus. Senile changes of the Alzheimer’s type. Very sad! My brother was a fighter! Even though he knew something was wrong, he kept playing Yahtzee, Bingo, singing, dancing, and exercising everyday. His last three months were actually joyous. He had no inhibitions or understanding of what was happening at the end. I miss him so much!

  • Leslie H.

    Depending on the stage or progression of the disease, this may or may not make a difference. My mother knew she had memory problems but when the appt. was made she couldn’t remember why and then denied she had memory issues. After the Dr. gave her his diagnosis she said he was a quack and didn’t know what he was talking about. Then we took her to a geriatrician who of course gave her the same diagnosis. Her answer was the same. We tried to put her on Aricept but she soon realized it was for Alzheimer’s and refuses to take it. To this day, 6 years later, we have been unable to make any progress. There is no POA, no financial or guardianship documents, and she refuses to move or get in home care. She is at a point where her everyday life is wracked with hallucinations and personality changes. What do you do??

  • Melissa Davisson Miller

    My mother was told of her diagnosis of Alzheimer’s, but she cannot recall being told nor our discussions about it afterwards. Makes me wonder how many of the patients in this study actually were told but cannot recall being told.

About The Author

Profile photo of Alissa Sauer