My Doctor Didn't Tell Me I Had Dementia

Posted on April 21, 2015 by Anne Ellett

Dementia Care

Less than half of people diagnosed with Alzheimer’s disease or their family caregivers report receiving a clear diagnosis from their medical provider. Doctors and nurses are smart people. How could it be that only 45% of people with Alzheimer’s disease are told about their diagnosis?

Could it be that the medical providers don’t know how to diagnose Alzheimer’s disease or other types of dementia? Maybe, sometimes it is not clear-cut. Certainly, other medical conditions such as stress, depression, adverse effects from medications, and illnesses such as diabetes or kidney failure can make a person confused and lethargic. But in today’s medical world, there are tests that can be done to rule out other diseases and with a high degree of accuracy, dementia can be diagnosed.

  • Perhaps over half the people affected by dementia don’t receive their diagnosis because the doctors and nurses don’t want to talk about it?
  • They don’t want to be the bearers of “bad” news”?
  • Or they think that “nothing” can be done?

I disagree. Receiving the correct diagnosis and having it clearly explained can be an empowering “call to action." While there is no curative treatment for Alzheimer’s and other dementias, receiving the correct information allows you to be an active partner in decisions that will affect you the rest of your life.

In the report from the Alzheimer’s Association, they note that more than 90% of people with the four most common cancers — breast cancer, colon cancer, lung cancer and prostate cancer — got a clear, verbal diagnosis. "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, vice president of constituent services for the Alzheimer's Association.

If you or a loved one is experiencing changes in memory or judgement, meet with your doctor, ask for the necessary tests and require full disclosure of the implications of all the tests. It’s your right to know you’ve received the correct diagnosis and to obtain a second opinion if necessary.

An early and documented diagnosis, when coupled with access to care planning services, leads to better outcomes for individuals with Alzheimer’s as well as their caregiver. Wouldn't you rather know the truth than be kept in the dark?


Posted in alzheimers, dementia