How to Stay Social After an Alzheimer’s Diagnosis

Scott Berkheiser was always the kind of person who didn’t have to take notes in meetings; that’s how sharp his memory was. “I was an engineer in the aerospace industry, so my brain was sort of my main asset,” he says. When he started forgetting action items or next steps after those meetings, he knew something wasn’t right.

Diagnosed in 2023 with mild cognitive impairment due to Alzheimer’s disease, Berkheiser, now 59, of Venice, Florida, wasn’t sure he wanted to talk about the condition at first, because of the stigma surrounding memory loss. But he knew he wanted to connect with others who could understand what he was going through.

A longtime triathlete, he searched online for others who were still competing after an Alzheimer’s diagnosis and found a competitor named Dan Jaworski, who also happened to live in Florida. A few weeks after Berkheiser sent Jaworski an Instagram message, the two connected over the phone. Hearing Jaworski’s story helped Berkheiser feel less isolated, and also introduced him to the Alzheimer’s Association, where he’s now an active member of his local chapter.

“Being social and being active are really our best defenses against worsening cognitive decline,” says Richard Peter Catanzaro, MD, the chair of psychiatry for Northwell's Northern Westchester Hospital in Mount Kisco, New York.

The news that you have Alzheimer’s disease can be overwhelming and isolating, says Elizabeth Edgerly, PhD, the senior director of community programs and services at the Alzheimer's Association and a licensed clinical psychologist in San Jose, California. “People grapple with sharing their diagnosis and how you go about doing it,” she says.

Reconciling what this diagnosis means for you can stir up many fears that might make socializing more difficult. For example, you might be anxious about not remembering names of friends or their family, not being able to find the right words in conversation, forgetting past discussions with this person, or being in an unfamiliar environment. You might worry about what your limitations will be in social settings while not yet knowing what obstacles you’ll encounter, Dr. Catanzaro says.

The setting can contribute to these worries: You might fear you’ll have a hard time following the plot of a movie or play if you decide to go to the theater, for example. Or, you might be concerned about what others will think. “We all have a certain image of ourselves,” Catanzaro says. Just as some people feel uncomfortable going to, say, a high-school reunion after beginning to lose some of their hair, others may feel sensitive about friends seeing them after they’ve lost a bit of cognitive function, he says. “Noticing I’m not as sharp as I used to be can be embarrassing,” he adds.

Allow yourself time to experience and process these and other emotions brought up by your diagnosis. “You need to grieve or grapple with the diagnosis, and then you need to decide what's next,” Dr. Edgerly says.

An Alzheimer’s diagnosis and your awareness of changes in your cognition can be damaging to your self-esteem, and you may doubt that friends will want to stay in your life. It’s true that some friends may pull away, but others will rally around you, Edgerly says. Think about the people you trust the most and lean into those relationships, she says. Be direct in asking for their help or support in specific ways and social situations.

You may also want to build new relationships during this time. For example, you might want to look into local Alzheimer’s support groups. Meeting others with your same diagnosis helps normalize the experience, Catanzaro says.

“You realize there are other people going through this, and they're feeling the same things, and you can talk about it [without] judgment,” Berkheiser says. Plus, you don’t even have to meet in person. The Alzheimer’s Association operates an app and an online forum where you can connect with others who have the disease and their caregivers. (The organization also runs a free 24/7 helpline at 800-272-3900 if you’re having a hard time finding necessary resources or support.)

A therapist or counselor you see individually may also be able to help you process this diagnosis, navigate changing emotions as your condition progresses, and support you through any mental health challenges that arise, Edgerly says. It’s a smart move to look for someone with experience working with people with Alzheimer’s disease, she adds.

Think about implementing some workarounds that can help you stay up-to-date on key details about your friendships that are getting harder to remember. For example, Catanzaro suggests making an index card before you meet a friend with the name of their kids or grandkids or other details that might give you a little comfort to be able to refer to on the sly.

You might also consider bringing a trusted companion, loved one, or caregiver with you who can guide you through some of your social interactions. They may be able to step in and help you avoid uncomfortable moments by saying things like, “Oh look, here’s John, our neighbor from three doors down,” Catanzaro says, before you have a chance to wonder where you know John from or what his name is. “Caregivers or loved ones of people with Alzheimer's will often do some preliminary interventions to try and head off any awkward moments,” he says.

Look for ways to adapt the activities you enjoy to your needs as your memory continues to change. For example, if you like to sing but your previous choir practices become hard to keep up with, host a few friends for a karaoke night at home, Edgerly says. “It won't be exactly what it used to be, but you can find something that's still really fun and gets you time with friends and family [in] a different way,” she says.

“They can also be a bit of a catalyst, someone to say ‘I think we should go out to dinner with so and so’ or schedule a weekly lunch to keep the momentum going,” Catanzaro says. Caregivers can look for groups for you both to join or other events you can participate in together, Edgerly adds.

This person might also help you craft an exit plan for when you’re ready to leave a social activity. Some people with Alzheimer’s may find certain events or atmospheres a little overwhelming. If you think that might happen, you can have a signal with your caregiver that alerts them it’s time to help you leave, he says. They can also help scout out quiet corners of large, overwhelming events, Edgerly adds.

Social life after an Alzheimer’s diagnosis will look different for everyone. But Berkheiser’s advice is to make the most of it. “Don't take anything for granted, and enjoy life the best you can,” he says. “Everybody has different means and different limitations and different problems, but enjoy the time you have left.”

• An Alzheimer’s diagnosis can stir up feelings of worry, fear, and embarrassment about social activities, but socializing may ward off cognitive decline.
• Focus on activities you enjoy that feel manageable and doable. Keep in mind that this may continue to change as the disease progresses.
• Lean on trusted loved ones to help with logistics, transportation, and details that may get more challenging to coordinate or remember.