When a loved one is beginning to exhibit some signs of early dementia, it is natural to feel stressed or anxious about the road ahead. However, a stressor that isn’t often discussed is the added difficulty of re-learning how to communicate with your loved one as their brain changes. Because dementia affects how the brain processes information, the ways in which you’ve always communicated may begin to fall flat, upset your loved one, or end up frustrating you both. If you’ve found yourself in this position, we’ll walk you through some helpful approaches for communicating with a loved one in this new phase of life—and for having tough conversations about their care before their dementia progresses.

First things first: Is it ordinary forgetfulness or is it dementia?

We all forget things from time to time, and we’re all more likely to grow forgetful the older we get. The difference between age-related forgetfulness and dementia is that dementia entails chronic forgetfulness and difficulty in making connections. For instance, it’s normal to forget to pay a bill now and then, but it’s not normal to forget for months at a time. It’s also not normal to fail to make the connection between receiving a bill and paying it; those with dementia will often stash a pile of unpaid bills somewhere, because they may not remember what to do with it. Consistently losing track of time, like what decade we are in, what day of the week it is, and misplacing items are other indicators of more serious memory loss and cognitive impairment.

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Mild to moderate cognitive impairment means it’s time for some tough conversations

If the family and/or friends collectively suspect their loved one has dementia, then the person who is trusted most by the affected loved one should begin having some tough conversations with them immediately, like requesting power of attorney and a medical directive, to ensure their loved one’s wishes are met and they are cared for physically and financially as the disease progresses. Having your loved one comply with this request will likely be met with resistance. Because the disease has impaired their reasoning, judgement, and decision-making, they may not realize or accept that their cognitive abilities are declining. Therefore, you may need to take a creative approach to the conversation, while keeping your loved one informed and respecting their wishes. Here are two real-world examples:

• Example A: Janice is a single female in her 80s, and her family noticed some of the signs of dementia. Janice was in denial of her cognitive impairment, but her family was concerned about being able to properly care for her down the road without power of attorney. Knowing that Janice would shut down if the conversation drifted toward her mental abilities, her brother instead reframed the conversation. He said, “Janice, I’ve been worried about what would happen if you had a stroke or if something happened to you. Who would take care of your pets or pay the bills and keep your house in order while you recovered?” Janice then freely granted her family power of attorney.
• Example B: An adult daughter was growing concerned that her father, who is in his 90s, was experiencing greater cognitive impairment. She knew she wanted to be granted power of attorney sooner rather than later, because it would make it easier for her to continue to care for her father. She chose to approach the discussion by framing it as repaying her father for all he had done for her as she grew up, saying “Dad, you’ve always been there for me. Can I please be there for you now and help you like you’ve helped me for so much of my life?” Her father agreed to grant her power of attorney and to allow her to handle more of the day-to-day care he required.

The golden rules of communicating with someone with dementia

When you’re having these conversations, you’re also entering a new frontier: Communicating with a loved one whose brain has changed. And while everyone is different—with different personalities, cultural backgrounds, and life experiences that affect how we like to communicate—those preferences may evolve as dementia progresses. The effects of dementia on the brain mean that you’re likely to experience a new side of your loved one, one that you may not know how to communicate with. We’ll dive into some more stage-specific tips next, but in general, there are certain “cardinal principles” you’ll want to refer to when you’re communicating with people with dementia.

• Make them the expert: As cognitive abilities decline, we may find ourselves beginning to speak to our loved one similarly to how we would speak to a child. This is absolutely the wrong approach; your loved one likely doesn’t realize or remember that they have dementia, and they may feel ashamed or irritated to be told “Put on this blouse” rather than be asked “Would you like to wear this blouse for our lunch date?” Remember to always be sensitive and treat the person with dignity and respect.
  Example: “What do you mean I’m going to the doctor? No one told me about this, no one tells me anything!”
  Don’t say: “I have called you every day about this appointment for a week, and you circled it on your calendar.”
  Do say: “Do you think it’s a good idea to go now? There is an appointment waiting for you, and they are hard to get. You always liked this doctor.”
• Do not try to change their behavior—change yourself or the environment instead: This can be especially hard for caregivers, but remind yourself that your loved one’s brain is not working the way it used to. Their behavior may seem irrational, stubborn, selfish or, at times, mean, but these changes stem from them trying to make sense of an environment that often no longer makes sense to them. You have to adapt your behavior and the environment to your loved one, validating their feelings and de-escalating as needed.
  Example: “I am the head of this household, and I make the decisions. No one tells me what to do.”
  Don’t say: “You know that your doctor said you have memory loss, so I have to make all of the decisions from now on.”
  Do say: “You are right. I was really out of line on that one. I apologize. It won’t happen again.”
• Be reassuring: Your loved one will likely become confused or upset easily. Their brain is operating differently, and that change can make ordinary scenarios feel uncomfortable and frightening for them. Keep that in mind and try to be a soothing presence. Maintain an open and cheerful demeanor, with welcoming body language and a friendly tone of voice. When they’re unsure of what’s going on around them, your loved one can look to you and how you’re reacting for reassurance.
  Example: “What are we doing here?”
  Don’t say: “We are here at the bank so I can change the address and have your statements sent to my house.”
  Do say: “We are just taking care of a few things. Everything is okay. I will explain later.”
• When in doubt, distract: You may notice your loved one start to fixate on certain things. It may be something they’ve convinced themselves of, or it may be a desire to do something that is either unsafe or impossible to achieve—like wanting to take their keys and go for a drive, or asking to visit a family member who has passed away. Giving them a truthful response can be painful and force them to re-live an unpleasant experience, so instead, try redirecting through questions or new activity. Avoid negative statements!
  Example: “Where are my keys? I want to go visit my aunt. I visit her every Thursday, and she’ll be expecting me.”
  Don’t say: “Your aunt passed away a long time ago, so you don’t need to visit her. And I can’t give you your keys, it’s not safe for you to drive a car.”
  Do say: “Hold on, I’m just about finished baking a batch of cookies. Do you like them? They are your favorite recipe. Do you think they are up to your standard?”

These tips may not be intuitive, and it may feel strange to begin using them when speaking with your loved one. That is completely normal. Try to introduce these tips slowly to see if they help you have more productive conversations with your loved one—and know that these are all tried-and-true approaches developed by Belmont Village staff working in our memory care communities.

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Early-stage dementia communication tips

The early stages of dementia can be especially difficult as you begin to navigate some major shifts in your relationship. For family and friends trying to figure out how to speak with their loved one in early dementia, Joyce Mahoney, Belmont Village’s Vice President of Memory Care and Programming, has shared some tips to keep in mind.

• Continue to speak with them: A person with dementia will often experience a conversation happening around them—or even about them—without being invited into it. Keep including your loved one in conversations, and let others know that they can speak directly to the person.
• Give them time: Your loved one’s brain is working longer and harder to formulate a response, so give them plenty of time to respond and listen to their thoughts, feelings, and needs. Don’t interrupt unless they’ve asked for help.
• Don’t be afraid to ask: Your loved one may be uncomfortable or embarrassed by their cognitive decline, whether or not they realize that that’s the cause. Be sure to ask if you suspect certain environments, activities, or people are stressful or confusing to them.
• Continue to be a friend and loved one: This is a tough time for both of you, but your honesty, support, and continued friendship are important. Make sure to do the things you’ve always done together—like crack jokes.

Moderate-stage dementia communication tips

The moderate stage of Alzheimer’s is typically the longest and can last for many years. The person will have greater difficulty communicating and will require more direct care, and you’ll want to try some new communication tactics at this point:

• Be mindful of your environment and your body language: Your loved one will have a harder time speaking with you and will be sensitive to how you speak to them. Engage with them one-on-one in a quiet space that has minimal distractions. Speak slowly and clearly and maintain eye contact and friendly body language.
• Be patient: Give the person plenty of time to respond so they can think about what to say. Be patient and offer reassurance, which may encourage the person to explain their thoughts. Listen and try to find the meaning in what the person says, and if you’re not sure, repeat back what you heard to clarify.
• Break conversations up into manageable components: Lengthy requests or longer discussions might be overwhelming for your loved one. Try switching to yes or no questions, like “Would you like some coffee?” rather than “What would you like to drink?” Avoid asking more than one question at a time, and break any instructions down into clear, digestible steps.
• Try non-verbal communication: Sometimes spoken communication can be harder to process, so try giving visual cues to get your point across, or demonstrate a task to encourage participation. You can also try written notes, which can be helpful when spoken words seem confusing.

Learn more about how to communicate with a loved one who has dementia

Few people are prepared for a major change like a dementia diagnosis, and they struggle to figure out how they interact with and communicate with their loved one. If you’re looking for more information on how to care for and support someone with dementia, we encourage you to watch our Communication Tips Webinar for more strategies recommended by Belmont Village staff.