More than Half of People with Alzheimer's Are Not Told Their Diagnosis

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According to a 2015 report by the Alzheimer's Association, only 45% of people with Alzheimer's disease report having been told of their diagnosis, and only 50% of proxy responders (a family member or a caregiver such as a healthcare power of attorney) report having been informed of their loved one's diagnosis. 

The Study

These figures were compiled from a study that involved over 16,000 Medicare beneficiaries each year from the years 2008, 2009 and 2010.

The participants were asked if they had ever been told that they had Alzheimer's disease. If they had other diagnoses, they were asked about those as well, such as different types of cancer, high blood pressure, arthritis, Parkinson's disease, etc.

The Results

Participants report being told of their specific diagnoses at the following rates:

Of note, the participants who demonstrated higher problems with activities of daily living such as bathing, dressing, grooming, etc., were more likely to be told of their diagnosis of Alzheimer's than those whose functioning on a day-to-day basis was less impaired.

Were They Told and They Forgot?

Good question, and one that was asked by the Alzheimer's Association as well.

It's possible that some people were told of their diagnosis and forgot, although the rate of proxies reporting they had been told was only just slightly higher.

In support of this possibility, there has been research conducted previously that demonstrated that some people (both patients and their proxies) who are told that the diagnosis is Alzheimer's disease don't always understand or receive it correctly.

Thus, it's possible that the diagnosis was mentioned (perhaps in passing?) to some of these study participants and not fully received. However, even given this possibility for some people, the percentage rate of informed participants remains markedly low and indicates a problem.

In my clinical practice, I've spoken with several people where it appears that their physicians may have told them in a kind and gentle way that they have "some memory problems" or "a little dementia." These family members and patients have said to me, "Oh, the doctor said he's got a little dementia. At least it's nothing like having Alzheimer's disease!" Yet, when I review their medical records, I'll often see a clear diagnosis of Alzheimer's disease or dementia. While a diagnosis of dementia doesn't necessarily mean that someone has Alzheimer's disease (Alzheimer's is one specific type of dementia), dementia can cause significant and irreversible cognitive and behavioral problems.

Based on these observations, it appears that some people might have been informed about "dementia" and not necessarily understood its symptoms and impact on the person.

Why Might People Not Be Told of Their Diagnosis?

Many family members and physicians are concerned about upsetting the person with Alzheimer's disease. They don't want to cause feeling of depression or contribute to the risk of suicide, although research indicates that these both are low risks related to the disclosure of an Alzheimer's diagnosis.

A diagnosis of Alzheimer's disease is also something that requires a little more time to explain, and physician office visits are often quite limited in time.

Why Should People Be Informed of Their Diagnosis?

We all have a right to be informed about our diagnoses. I've previously outlined 12 benefits of early detection of dementia, but I'll highlight just a couple of them here.

One: An open discussion about a likely diagnosis of Alzheimer's disease allows for questions and treatment options. It also might open the door to further discuss the person's symptoms and consider the possibility of other potentially reversible causes of memory loss which otherwise might be swept aside.

And two: A clear diagnosis provides the opportunity for the person and his family to plan for the future, as well as potentially impacts their current decisions of how to spend time and energy.​

Sources:

Alzheimer's Association. 2015 Alzheimer’s Disease: Facts and Figures. 2015. http://www.alz.org/facts/downloads/facts_figures_2015.pdf

Alzheimer's Disease and Associated Disorders. 2012 Jul-Sep;26(3):232-7. Agreement on diagnosis among patients, companions, and professionals after a dementia evaluation. http://www.ncbi.nlm.nih.gov/pubmed/22037598

 

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