Telling Others That You or a Loved One has Alzheimer's Disease

Kathleen Allen, LCSW, C-ASWCM

Senior Care Management Services, LLC

  • Expert Advice
Published on:
Man talking with co-workers

Learn important questions to consider when deciding to tell others that you or a loved one has Alzheimer's disease.

There are two scenes in the movie “Still Alice” when Alice or her husband is suddenly confronted with questions about her behavior. The first happened after she went out running, lost track of time, and he could not contact her to remind her of their planned dinner with friends. By the time she returned home, they were already late. The second scene was with her own department chair about the student evaluations she received for the previous semester.

With none of the evaluations at her previous levels, Alice was faced with suddenly admitting she had early-onset Alzheimer’s disease. Once she did, everything was clear to her department chair. With the news out, and with her own realization her teaching abilities were no longer meeting her personal standard, her career took a dramatic turn. She ceased teaching and turned her courses over to colleagues in the department. Her long career, the one she so loved, was finished. She was 50 years old.

The scenes depict some of the many choices one has to make when diagnosed with Alzheimer’s. For the one diagnosed, when is the right time to reveal the diagnosis to friends, neighbors, and colleagues? When is the right time for family members to reveal a loved one’s diagnosis?

In the scene when Alice returns from her run, it is implied their friends have not been told about her Alzheimer’s. The friends are at the restaurant waiting, and her husband is very concerned they have stood them up. What is behind their hesitation?

At the university where she worked, should Alice have gone right to her department chair when she first learned her diagnosis? Would that have changed how he viewed her and her work? Would he have questioned her ability to teach, research, and mentor doctoral students? By revealing this news, would her decades long career end even earlier? Was she ready for that? Was it right to hide such important information?

It Can Take Time

With any news that changes the direction of our lives, such as learning we have Alzheimer’s, it takes time to integrate the information into our everyday lives and future plans. This is true for the diagnosed, spouses, family members, and close friends and colleagues. Everyone needs the time to digest the information and determine how to proceed. We need time to seek out experts and resources. We need time to put all this new information into a new plan for our lives.

Relationships May Change

Telling friends can be challenging. What do they know about the disease? How will this change the relationship we have enjoyed for so long? What do they need to understand the disease? If they never encountered this in their own lives, they may need education and resources to improve their understanding.

Work Life Will Change—Sooner or Later

Depending on where we are in our Alzheimer’s disease, our work life will be affected by an Alzheimer’s diagnosis. In the early stage, continuing to work may be an option. Further along, that may not be true. For Alice, her decision to continue teaching that year had backfired. Until she received the student course evaluations, she was unaware how the disease was affecting her teaching ability.

How Did You or a Loved One Handle These Revelations?

Do you have a story of how you or a loved one moved through this period of a new Alzheimer’s or dementia diagnosis? Did you handle it differently with different people in your life? Did you let it travel by word of mouth? Whatever you did, what would you repeat, and what would you do differently? Please share your story. There is surely much we can learn.

About the author

Kathleen Allen_2

Kathleen Allen, LCSW, C-ASWCM

Senior Care Management Services, LLC

Kathleen Allen has been working with older adults and their families for over 20 years.

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