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.
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.