“Mom, remember I mentioned that a few minutes ago?” I asked. “We just spoke about when I was coming to see you.”
It was a rookie mistake. Years ago, when my sharp mom started experiencing cognitive decline, I assumed she just wasn’t paying enough attention, so I did what most kids who want their parents to always stay the same did. I called her out for repeating herself. I figured if I reminded her not to forget, then she wouldn’t.
Ah, naiveté. She was simply doing what many older people do – slow down and forget the details of their recent experiences. Mom could remember song lyrics from the 1940s without missing a beat, but her short-term memory wasn’t as available.
It pains me to think I caused her any grief then about something she couldn’t control. As a caregiver, my mantra in dealing with my accomplished, loving parents and stepfather has always been “dignity, choice and control.” My slip was a reminder of how easy it is to miss the signs of cognitive impairment. My new goal became learning smart ways to communicate with a loved one who has dementia.
For some caregivers, it’s just a matter of adjusting your words and actions a little bit, and accepting inevitable memory slips. For others, it may be a matter of overcoming dread, especially for those with a loved one in the late stages of the condition. It’s much harder to walk through the door to greet someone who doesn’t recognize you or care to interact.
Based on my experiences and those of several experts I contacted, here are eight tips for how to avoid common pitfalls and make it easier for you to have meaningful visits with someone who has dementia:
1. Adjust to Your Loved Ones, Not the Other Way Around
I know all too well from personal experience how much you want to bring your loved one with dementia into your world. But that’s futile and the sooner you accept that, you’ll have a much better chance at having great visits.
“The adjustment in your communication needs to be made 100% by the person making the visit. Don’t expect that the person you’re visiting with dementia will make any adjustment,” says dementia care specialist Vivian Green Korner.
“You need to live in their world and not expect them to come into yours. Get rid of the idea of normal. You won’t have the same kind of conversation you once had with someone. They may no longer be able to communicate in the way you’re used to communicating. Conversations may become less intellect to intellect and more emotion to emotion,” says Korner.
2. Redirect Challenging Conversations in Creative Ways
Too often, our focus is on what a person with dementia loses, but we don’t focus enough on what they still have. Memories from decades ago. Responding with intellect and humor in the moment. A connection to music that doesn’t fade.
“A loved one with dementia might ask you five times about the time of their doctor’s appointment. You answer the first couple of times nicely, but then get irritated because you already answered it,” says Anthony Cirillo, president of The Aging Experience and host of the Virtual Summit for Caregivers.
“A better way to approach it is by saying something like, ‘Your appointment is at two. You know, that reminds of something…a song. Do you remember it? Five foot two, eyes of blue. Yeah, that’s it. Let’s find it on the playlist.’ You answered the question, you diverted respectfully and you engaged them in something they still can participate in – music. Music activates something in people no matter how advanced their dementia,” says Cirillo.
3. Engage in the Moment, Use Concrete Objects
“Visits are all about engagement,” says Korner. “Living in the moment is what happens when you work with people who have dementia. So engage with them in the moment, whatever that might be. Be perceptive about what their living environment is like and what they are like at the time you visit. Instead of asking them too many questions about their recent activities, comment on objects in the room.”
Korner gives the following example: Instead of saying “I remember when you got that picture and you were with so and so,” try asking “I like that picture – aren’t they beautiful colors?”
She also suggests using concrete objects as a conduit to a conversation. “Say, ‘Look at the leaves, look at the birds.’ I’ve learned that it can be beneficial for caregivers to slow down and live in the moment, too. We live in such a fast paced world full of agendas, appointments and schedules,” says Korner.
Paula Spencer Scott, author of Surviving Alzheimer's: Practical Tips and Soul-Saving Wisdom for Caregivers, has similar advice. She suggests bringing an object or prop with you when you visit to provide a starting point for conversation. Some prop ideas include books, toys, photos, or even edible treats.
4. Connect Through Eye Contact and Touch
Since most communication is nonverbal, don’t forget the power of making eye contact and physical contact. When you walk in the room, smile and you’ll likely get a smile back.
“Suggest that visitors gently touch the person with dementia before they start to speak,” says Scott. “Touch is a powerful communicator, even when language skills are diminishing. A gentle pat to the back or knee a few seconds before ‘hello’ cues the person's attention and, more helpfully, reduces the odds of starting the visit off on a startled, panicked, or irritated note.”
5. Be Cautious When Discussing the Past
“You can bring up the past, but just be careful about how you bring it up,” says Korner. “Don’t say, ‘Oh you remember such and such,’ which sounds like you’re chiding the person. You can incorporate the past and talk to the person in a way that makes them feel valuable. Ask their advice or help on things. How did they once handle a situation you’re currently facing? Everyone needs to feel valued and valuable. Intellect is often perfectly intact even if memory is fading.”
6. Help Them Feel Comfortable with Memory Loss
If my mom ever mentions how frustrated she is with forgetting something, I tell her I have the same issue, and it’s true. She may be in her late 80s and I’m in my mid 50s, but who over 40 hasn’t forgotten a name or an event? I joke with mom now about the wisdom in the old saying “Happiness is good health and a bad memory.”
I get engrossed in her stories even when they don’t make sense or if she gets some details wrong. She’s still sharp and her sense of humor and ability to tell a fun story is undiminished. If she asks me if I remember something the way she does, sometimes I say yes even if I don’t.
Like many caregivers, I’ve gotten comfortable with a little white lie that spares feelings. Being empathetic and normalizing memory loss is the kind option. Lord knows I want someone to make me laugh about it as if it’s no big deal when I am her age.
7. Try to Minimize Outbursts...
If something you say sparks your loved one and they get angry or frustrated by something, “don’t argue with them,” says Cirillo. “Empathize. Say, ‘I understand what you are going through and I wish it could be different, but together we will work through it.’ Recognize as they get into advanced stages of dementia that when you try to help them with something, they may perceive it as invading their space and it might trigger them.”
Since they may lose their facility with words and recall of specifics, emotion such as an angry reaction to something minor you don’t think warrants a fuss might be the only way they can express themselves.
8. ...But Don’t Be Overly Afraid of Outbursts, Either
Sometimes we are so afraid of a person with dementia having an outburst that we shut down ahead of time and miss the opportunity to connect.
According to Korner, “Don’t be afraid of listening to their negative feelings. It doesn’t necessarily mean things will escalate. You can empathize. If the conversation makes the visitor uncomfortable, then redirect the conversation. Ask permission to talk about something else. Say, ‘I’m hearing this is upsetting to you, so would you mind if I change the subject and we talk about an issue I’m having?’”
“Or get up and physically move, and make up a reason if needed,” says Korner. “Say, ‘I have a cramp in my leg, would you mind if we walked a little?’ Sometimes a quick change of scene or allowing time for the person to calm down if they get angry can quickly change the person’s mood. The good news is that even if they get angry, they may not remember it a few minutes later, so why should you hold onto it?”
Finally, Don’t Judge Your Loved One — Or Yourself — Too Harshly
During your visit, try not to judge the person with dementia based on what they once knew or how they once spoke or behaved.
“They aren’t acting out if they once had excellent table manners, but now perhaps eat with their hands. You can even have fun with it, but you have to let go of old behaviors and expectations,” says Korner.
She goes on to say, “Don’t judge yourself too harshly, either. It’s not like any of us are prepared for the challenges you face trying to connect to a loved one with dementia. It’s not like you go to school for this. But you need to accept and get up to speed as fast as you can when you’re faced with the situation.”