Op-Ed: Justice O’Connor’s Revelation Sets an Example for Those Facing Dementia

Karen Lindgren | November 16, 2018 | Opinion
Honest conversation can remove the stigma and fear surrounding a diagnosis, and allow those facing it and their loved ones to start planning for the future, with support

Karen Lindgren
If there is one thing the powerful women’s movement happening in this country is showing us, it’s that our voices — and our truth — are our strongest tools for change.

It was particularly meaningful for me, as a neuropsychologist, when former Supreme Court Justice Sandra Day O’Connor came forward a few weeks ago to announce she has joined the ranks of more than 5.5 million people in the U.S. living with dementia — hers, likely caused by Alzheimer’s disease.

It took me by surprise, and I’m sure others would agree. To see such a public figure, and such a strong, trailblazing one, at that, face such a life-altering diagnosis was a shock. But what stood out to me the most was the way in which she made that announcement in an open letter, with a public declaration of the disease and an admission of the limitations on her public life.

It was honest.

And in that way, her revelation exemplified one vital piece of advice I, as a clinician, would give anyone facing a new dementia diagnosis: It’s important to be honest — with yourself, with your doctor, and with your family.

Creating the best possible future

The diagnosis can be overwhelming — not just the news that you have dementia, but the sheer amount of information you will receive, and the emotional impact of facing a new and uncertain future.

Often, those who are diagnosed hesitate to share their story — maybe out of denial, or because they fear a stigma attached to Alzheimer’s and dementia. Other times, they might hesitate to avoid “burdening” their loved ones.

While there is no cure, I often tell patients and families that there is still good news. There are strategies to help you cope, move forward, and create the best possible future for yourself and your family.

Honest conversation about dementia can remove some of the stigma and fear surrounding the diagnosis. It allows us, and our loved ones, time to process the news and grieve. But, perhaps more importantly, it also allows us to start planning for the future, with support, as soon as possible.

You don’t have to write a letter to the world. You might decide to share the news gradually, starting with your closest family members. Telling close friends can bring additional support, and help others cope, as well.

Tap the available resources

Together, you may decide to speak with a family therapist, or seek support from a social worker who can connect you with the services you need. Resources such as the Alzheimer’s Association can be an asset, with local chapters such as Alzheimer’s New Jersey offering links to family support groups, wellness programs and more.

If you suspect you’re experiencing changes in your own memory or cognition, or if you notice changes in a parent, friend or loved one, don’t wait to get help; the sooner a diagnosis is confirmed, the faster you can plan for what’s to come.

Let the Honorable Supreme Court Justice Sandra Day O’Connor’s diagnosis be a calling out to all who question whether to share their diagnosis with family and friends. It takes courage to be one of the most powerful women in the United States and acknowledge a medical challenge that could change perceptions. But I believe she is setting the tone for a more honest way to communicate.