After his stroke, my husband had some dementia. He was only 60 and his memory loss was inconsistent, so I thought he was faking it sometimes to avoid being responsible for certain things, like following his physical therapy routine or remembering that we had already discussed that he wouldn’t be able to drive again. I’m ashamed now that I sometimes snapped at him, convinced he was manipulating me when he claimed not to remember conversations we’d just had. The unpredictable nature of his memory loss made it hard to accept—one moment he could recall intricate details about a work project from years ago, the next he couldn’t remember what we’d discussed five minutes earlier about his medication schedule.
I didn’t understand then how memory loss works, how the brain can hold onto old memories while struggling to form new ones, or how stress and fatigue can affect cognitive function. Looking back, I see how my skepticism must have hurt him, adding shame and frustration to his already overwhelming struggle to make sense of his changed brain. It’s a particular kind of guilt, realizing you doubted someone you loved when they were telling you the truth about their experience.
After experiencing the complexity of memory loss through my husband’s stroke, I now recognize how harmful our instinctive approaches to cognitive difference can be. When visiting someone with dementia, it’s tempting to test their memory. “Do you remember me?” we ask, or “Remember when we went to that wedding?” or “You know who this is in this photo, right?” We might think we’re helping them access memories or staying connected to their past, but what we’re really doing is setting them up for failure and shame.
Think about how it feels when someone asks you “Do you remember…” and you don’t. That sinking feeling in your stomach, the embarrassment of having to admit you’ve forgotten something you “should” remember. Now imagine experiencing that feeling multiple times an hour, every day, as your brain betrays you more and more frequently. Imagine watching people’s faces fall when you can’t remember them or seeing their poorly hidden disappointment when you don’t recall a supposedly significant event.
The truth is, asking someone with dementia if they remember something is rarely about helping them—it’s about making ourselves feel better. We want confirmation that they still know us, still hold onto memories we share, still maintain connections to their past. But in seeking this reassurance, we’re causing distress to people we care about.
This was made crystal clear to me on a recent visit with a hospice patient who has advanced dementia. As I walked into the room, her adult child said, “Look, Mom! It’s Liz! You remember her, don’t you?” Her mom looked the way a classroom full of kids looks when the teacher announces a pop quiz. The mom looked at me and said, “You must think I’m so dumb.” She was clearly ashamed.
There’s a better way. Instead of quizzing people about their memories, we can offer information freely and without expectation. Rather than “Do you remember me?” try “Hi, Aunt Sarah, it’s Elizabeth, your niece. I always loved visiting you and Uncle Jim when I was a kid.” Instead of “Remember when we went to that wedding?” try “I was thinking about Jenny’s wedding the other day—you wore that beautiful blue dress and danced every dance.”
This approach accomplishes several things:
- It provides context and information without requiring the person to admit what they don’t remember
- It allows them to engage with the memory if they can access it, but doesn’t put them on the spot if they can’t
- It maintains their dignity by treating them as a conversation partner rather than a memory test subject
- It shifts the focus from what they might have forgotten to what you can share together in the present moment
Some helpful phrases to keep in your pocket:
- “Let me tell you about when we first met…”
- “I was just thinking about the time when…”
- “I have such fond memories of…”
The other approach I like is to ask if they want a reminder. I say, “Would you like me to remind you how we know each other?” Sometimes the person with dementia will immediately say yes, but other times this prompt seems to open up space for them to fill in what they do know even if its incomplete. Last week I visited with a hospice patient who responded with, “I know you’re with hospice, but I can’t remember what that means.” That enabled me to help her understand not just who I was but what hospice does.
Someone with dementia may have different memories available to them at different times. They might recognize you immediately one day and not know you the next. They might recall distant events clearly while recent ones slip away. By offering information freely instead of quizzing them about what they remember, you create space for whatever level of memory and connection is possible in that moment.
Most importantly, focus on making each interaction pleasant in the present moment rather than trying to establish connections to the past. Share stories, look at photos together, engage in activities they enjoy. Let them know they are valued and loved right now, regardless of what they can or cannot remember.
Elizabeth Kleinfeld is a disabled widow who blogs about grief, disability, Buddhist life, and joy. Sign up for her free monthly newsletter here.