Informing Your Loved One About Their Alzheimer’s Diagnosis

Kathleen Allen, an Aging Life Care Specialist, explores the issues associated with informing a loved one about their diagnosis of Alzheimer's disease.

In clinical practice, there has been a tendency among physicians to not inform their patients of their Alzheimer’s diagnosis. Looking at Medicare data from years 2008 – 2010 including the data of 16,000 people, and interviewing patients who were being treated for Alzheimer’s, one study concluded that just 45 percent of physicians told their patients they have Alzheimer’s. It wasn’t that the physicians did not understand the benefits of informing their patients. Rather, they had reasons for not doing so: for example, they might have believed that telling would be too traumatic or too confusing for certain patients.

Perhaps because we live in a time of unquestioned rights to our own information, this finding can come as a surprise. But looking a little further, there are both pros and cons to letting a loved one know they have been diagnosed with Alzheimer’s, or with other forms of dementia. Relatives of loved ones can be torn about how to handle this. Would you tell your loved one with Alzheimer’s about their diagnosis? Are there be any good reasons not to?

Reasons Why Some May Not Inform a Loved One about Their Diagnosis

Let’s first look at reasons why a family member might not inform someone of their Alzheimer’s diagnosis.

• Knowing might set in motion a sense of hopelessness.
• Telling them might cause them emotional stress.
• Not knowing can prevent a person from feeling like a burden on family.
• “Why bother?” “It may make no difference at all,” you might think to yourself.

Reasons to Tell a Loved One They Have Alzheimer’s

Why would we tell a loved one they have Alzheimer’s?

• Whatever the diagnosis, they have a right to know. It is the honest thing to do.
• Your loved one may suspect something is wrong. Knowing may bring a sense of relief.
• Knowing allows a person with Alzheimer’s and his or her family to start putting a plan in place for long-term care. This might include advance care planning documents, identifying family or professional caregivers, or a combination of both, and identifying community resources such as local memory care and adult day centers. 

These are all possible reasons for telling or not telling one of their Alzheimer’s diagnosis. If you do opt to explain the diagnosis, also consider how to explain it, so that you give your loved one the support they need.

Supporting Your Loved One as They Learn of Their Diagnosis

Without question, there are persons with Alzheimer’s or other forms of dementia who may not be impacted when receiving the news of their diagnosis because they are at a stage of the disease that leaves them too forgetful to retain it, or unable to understand it. But in those situations where the diagnosis is being presented to someone capable of understanding, how might we best present the information, and give support to our loved one?

• Include your loved one’s physician to explain the medical diagnosis and options available for medical management.
• Tailor your explanation to your loved one’s level of understanding.
• Stay positive. Support your loved one by reminding them that you are going to do everything you can to support them through this illness.
• Choose appropriate terminology. An alternative to the labels of “Alzheimer’s disease” or “dementia” might be “memory problems.”
• Become an informed caregiver. Information is abundant through local and national organizations, online, and books.

Looking Down the Road as a Caregiver

As time goes on as an Alzheimer’s caregiver, find support for yourself. Especially if you are a team of one, consider additional caregivers to round out your team. Senior services agencies, your local Area Agency on Aging, and local private agencies are good options to check when looking for caregivers.