DIAGNOSIS VIDEO + ARTICLE:
Every 67 seconds, an American develops Alzheimer’s. Half the time, doctors don’t tell. Why would doctors do that? In a key study, the Alzheimer’s Association offers a few reasons.
The Alzheimer’s Association’s Alzheimer’s Disease Facts and Figures report found that only 45 percent of people with Alzheimer’s disease or their caregivers say they were told the diagnosis by their doctor. In contrast, more than 90 percent of people with the four most common cancers (breast, colorectal, lung and prostate cancer) say they were told the diagnosis.
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“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,” said Beth Kallmyer, MSW, Vice President of Constituent Services for the Alzheimer’s Association. “It is of utmost importance to respect people’s autonomy, empower them to make their own decisions and acknowledge that people with Alzheimer’s have every right to expect truthful discussions with their physicians. When a diagnosis is disclosed, they can better understand the changes they are experiencing, maximize their quality of life, and often play an active role in planning for the future.”
Why Not Tell?
Why would doctors not tell their patients about their Alzheimer’s diagnosis? Three typical reasons include:
- There is still no straghtforward test to diagnose Alzheimer’s, though there are tests that can rule it out.
- Doctors sometimes fear their patient’s negative reaction to that kind of news.
- Doctors are concerned they may not be believed. While an Alzheimer’s diagosis can change a patient’s life, it is based on the doctor’s clinical assessment, that is to say, their professional judgement.
The Alzheimer’s Facts and Figures report also found that people with Alzheimer’s or their caregivers were more likely to say they were told the diagnosis by their doctor after the disease had become more advanced. According to Kallmyer, this is a problem because learning the diagnosis later in the course of the progressive brain disease may mean the person’s capacity to participate in decision making about care plans, or legal and financial issues, may be diminished, and their ability to participate in research or fulfill lifelong plans may be limited.
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One of the reasons most commonly cited by health care providers for not disclosing an Alzheimer’s diagnosis is fear of causing the patient emotional distress. However, according to the new report, “studies that have explored this issue have found that few patients become depressed or have other long-term emotional problems because of the [Alzheimer’s] diagnosis.”
The Difficult Truth
According to the Alzheimer’s Association, telling the person with Alzheimer’s the truth about his or her diagnosis should be standard practice. Disclosure can be delivered in a sensitive and supportive manner that avoids unnecessary distress.
“Based on the principles of medical ethics, there is widespread agreement among health care professionals that people have the right to know and understand their diagnosis, including Alzheimer’s disease,” said William Klunk, M.D., Ph.D., Chair of the Alzheimer’s Association Medical and Scientific Advisory Council. “The findings from this report shine a light on the need for more education for medical students and practicing health care providers on how to effectively make and deliver an Alzheimer’s diagnosis.”
Dr. Klunk is a Distinguished Professor of Psychiatry and Neurology at the University of Pittsburgh School of Medicine in Pittsburgh, PA, where he also is Co-Director of the Alzheimer’s Disease Research Center.
Benefits of Disclosing an Alzheimer’s Diagnosis
The benefits of promptly and clearly explaining a diagnosis of Alzheimer’s have been established in several studies. Benefits include:
- Better access to quality medical care and support services
- The opportunity for people with Alzheimer’s to participate in decisions about their care, including providing informed consent for current and future treatment plans.
- Knowing the diagnosis early enables the person with Alzheimer’s to get the maximum benefit from available treatments.
- An early diagnosis also helps increase chances of participating in clinical drug trials that help advance research and may actual offer treatments that work.
- THe Alzheimer’s Association
- NBC News Washington
It was very distressing when our original neuro delivered brief info about testing and then went to hide in his office. I had to follow him to try to get info and he still wouldn't really explain. I had to do my own research . It should be delivered along with a list of ways to get informed and support groups provided.
My experience for my wife was similiar. The PP diagnosed dementia of the altzeimers variety and a second opinion was given by neurologist as MCI. I was left to figure out the change. I am just researching on line and waiting for the situation to get
worse for a pattern to emerge that will show the actual type of
dementia. Since my wife is in denial , the exact type may be a mute point at this time. We are managing the suttle changes in behavior and I get a lot of support on line.My hunch is that the PP was correct but didn't have enough evidence.
My father is on Medicaid. I am 100% certain he has dementia or Alzheimer’s. I had taken him to his dr in the past who refused to give him a diagnosis. He is in a nursing home now. His quality of life is terrible and they will not give him a diagnosis that could help him get better care. I believe the doctors in this country work for insurance companies. Not the patient.
Another reason why some people might want to learn their diagnosis early is to plan to end their lives while they are still competent to do so. This is a big taboo to talk about–but many people feel strongly that they would prefer death to dementia.