Should you tell your patients they have Alzheimer’s disease?

 A number of studies have shown that most doctors and healthcare providers agree on the benefits of telling their patients that they have Alzheimer’s disease (AD). But that is a hardly a generalization. According to the Alzheimer’s Association 2015 Alzheimer’s disease Facts and Figures, only 45% of Alzheimer’s patients report being told about their diagnosis – as compared to 90% of people with the four most common cancers who are told. As it turns out, November is Alzheimer’s Disease Awareness Month, and what better way to go about it than for doctors to make people who have this condition actually aware that they have it?

Granted, there is the fact that the very nature of the disease may render the patient oblivious to a diagnosis. What does this mean? Does it mean that doctors are indeed telling patient they have AD only for the latter to quickly forget they were told? Or does it mean that doctors refrain from telling their patients because they think, “what the heck, he’s going to forget I told him in about 5 seconds”? Regarding the second question, you can always let a relative, spouse, caregiver, or any other proxy know about the diagnosis. As for the first question, very few studies have looked into whether people who had been diagnosed with Alzheimer’s disease or another dementia recall being told their diagnosis. However, the Alzheimer’s Association commissioned an analysis of the Medicare Current Beneficiary Survey (MCBS) a continuous survey that about 16,000 Medicare beneficiaries living in the community or in long-term care facilities complete in any given year.

The analysis included such factors as the beneficiary’s age, sex, race or ethnicity, income level, education level, geographic region, and the patient’s degree of impairment according to the number of activities of daily living (ADLs) and instrumental activities of daily living (IADLs) that they required assistance with. A Medicare beneficiary with a claim that indicated an Alzheimer’s disease diagnosis – or in his or her stead, a proxy – would be asked, “Has a doctor ever told you that you have Alzheimer’s disease?” Disclosure rates were higher among beneficiaries with more severe disability than beneficiaries with less severe disability.  Moreover, even proxy respondent numbers are very low, indicating that inability to recall disclosure is not a significant factor. Additionally, studies have shown that a large percentage of people with dementia and even some caregivers were unable to precisely recall the diagnosis soon after being told.

Now, only you know whether you tell your patients that they have Alzheimer’s disease, and why. Just in case, though, here are some of the reasons cited by several studies:

Reasons for withholding an Alzheimer’s disease diagnosis

·         Uncertainty

The complexity and uncertainty of diagnosis is an oft-cited hindrance for disclosure.

·         Time constraints

In many healthcare settings, physicians have limited time to devote to discussing treatment options and support services, as well as educating about the disease and what to expect.

·         Lack of support

Doctors also note that there aren’t enough resources and services to support patients and caregivers.

·         Communication issues

Disclosure of diagnosis is one of the most difficult challenges that doctors encounter, including the concern of whether or not patients and caregivers will understood and accept it.

·         Emotional distress

This is a most dreaded complication that many doctors wish to avoid causing in their patients, though some studies have found that few patients become depressed or have long-term emotional problems as a result of diagnosis.

·         Patient’s wishes

A few patients would actually rather not be told they have AD. In other cases, it is the caregiver or relatives that request that the patient be kept in the dark.

·         Lack of treatment

One study found that 25% of healthcare providers cite the lack of a disease-modifying treatment as a reason for not disclosing diagnosis.

·         Stigma

Doctors may choose not to tell their patients they have AD in order to spare the social stigma that some – if not all – cultures attach to mental illness


As a doctor, one of more of those reasons may have at the very least crossed your mind. Also, as a doctor, you’re accustomed to weigh the benefits against the risks. So let’s take a look at the benefits of diagnosis disclosure.

Benefits of telling your patients they have Alzheimer’s disease

·         Improved diagnosis

Even an uncertain diagnosis can lead a patient to seek a second opinion – preferably from a specialist – that can confirm or deny that they have AD. Additionally, early diagnosis results in better management of the condition.

·         Improved decision-making process

When a patient is diagnosed early, he or she may still possess the soundness of mind to make decisions regarding his or her future care.

·         Improved care

As a result of the above, patients are likely to receive better care.

·         Respecting the patient’s wishes

The evidence points to the fact that most patients want to know what they have – unless they expressly state otherwise, as mentioned earlier.

·         Future planning

Knowing about an AD diagnosis not only allows the person to make decisions about their care, but also to get their legal and financial affairs in order.

·         Coping

Once the shock of the diagnosis wears off, patients and caregivers can grieve and then cope with the condition. Sometimes just knowing is a relief in itself. 

·         Access to services

Once the AD diagnosis is known, patients and their families are free to do their own research and learn more about services and resources available to them, such as support groups.

·         Safety

The knowledge that a loved one has AD enables the caregiver to install any home care medical supplies need to make sure the patient’s environment is safe.


How to tell your patients that they have Alzheimer’s disease?

Unfortunately, there is no established consensus regarding how to break the news to a patient and their family. However, most professional organizations – including the Alzheimer’s Association, Alzheimer Europe, the American and Canadian Medical Associations, the American Psychiatric Association, and the European Federation of Neuroscience Societies among others – agree that the information should be unveiled in clear, plain, and sensitive language. At the same time, these organizations also recognize that communication may be impossible or impractical in certain situations. In addition, some caregivers prefer a direct approach, while others favor a gentle explanation. There isn’t a lot of room to wiggle, and plenty of risk of being either too blunt or too indirect. For instance, some doctors disclose the diagnosis without actually using the words ‘Alzheimer’s disease,’ which can understandably result in quite an ambiguous statement.

A seemingly anonymous Alzheimer’s Association Early-Stage Advisor is quoted in the Facts and Figures report as recommending doctors to “deliver the news in plain but sensitive language. This may be one of the most important things I ever hear. Please use language that I can understand and is sensitive to how this may make me feel;” and also to “tell the truth. Even if you don’t have all the answers, be honest about what you do know and why you believe it to be so.” Or like Ricky Roma said in Glengarry Glen Ross; “Always tell the truth; it's the easiest thing to remember.”

Related: Alzheimer’s Diagnosis: What’s next?