Dementia does more than just unravel a person's memory, ability and personality. For many, it alters their ability to communicate.
In fact, the change in a person’s ability to communicate is based on those very things dementia is unraveling. As one loses short or long-term memory capacity, the ability to find the right word or name becomes increasingly difficult and sometimes impossible, causing frustration and fear where there once was confidence and clarity.
Are repetitive questions frustrating to receive hour after hour, day after day? Of course.
Is it heartbreaking to watch your mother struggle to recall the day of the week when she was once a prolific writer or public speaker? Is it crushing to see no sign of recognition on your father’s face when his grandchildren are in front of him? Yes and yes. Of course!
Now imagine how your loved one feels: over time, or sometimes overnight, she’s unable to express basic needs. She’s unable to recall the names that go with the familiar faces she sees each day. She’s unable to remember her own name. These are some of our own worst fears in life.
But communication is still possible. You and your loved one just need to find new ways to do it.
Here are six strategies for communication without frustration:
Adjust your expectations, not your tone or volume
Don’t speak louder or talk to your loved one like a child who doesn’t understand.
Cognition is complex and so is communication. Just because a person doesn't respond right away doesn’t mean she doesn’t understand. She may just need to hear the question again. It may just take longer to process the question and find its answer. Or she may know the answer in her head, but can’t get the words out — or remember what order to put them in — and decides not to try for fear of failing.
When you ask questions, don't expect an answer every time or get frustrated when there isn't one. Know there is more going on in Mom’s head then there once was several years ago.
Don’t push it
Rephrasing a question or thought can help. If it doesn't, move on.
Sometimes, a question that was answered easily the day before becomes difficult or impossible the next day. Take it all in stride and know this is unfortunately normal.
Too often, family and friends push people with dementia, repeatedly asking, “Who am I?” or “What’s my name?" and hoping that, one of these times, they'll remember. Don't do it! The only thing this accomplishes is heartbreak for you, and frustration, confusion, or even anxiety for your loved ones.
If your grandma calls you Caroline but your name is Marianne, roll with it. Big picture: It's not as important that your loved one remembers your name as it is for you to keep your loved one feeling comfortable.
Offer alternate means of communication
In some cases, the physical act of speaking is what’s most difficult, but language and comprehension are still there. Remember, language is complicated: your mom's ears may clearly hear and understand the words you're saying, but her brain might translate it incorrectly, leading her to say "spoon" when she meant to say, "summer."
Offer your loved one a pen and paper or a small dry erase board to communicate through writing. It may also help if you write out what you’re saying instead of only speaking.
Consider tech tools to augment communication as well. Many modern cell phones and devices have text-to-speech apps and other helpful programs that give the individual more control and independence in conversation.
Simplify your language
Remove extra, unnecessary words. It just makes the translation process more confusing and complicated, and it may overwhelm your loved one.
Keep your questions simple, and phrase them in a way that only requires a yes or no answer. That way, if the words get stuck on their way out, a nod or a shake of the head is an acceptable answer.
Remember, simplifying your language doesn’t mean speaking to your loved one like a child. When you ask Dad what he wants for breakfast, don’t rattle off all the options at once. For example, avoid asking: “Would you like cereal, fruit, yogurt, or eggs and toast for breakfast?” Present the options one at a time, requiring a yes or no answer only: “Eggs and toast?” “Cereal?” “OJ?”
Communicate without words
If your mom has the same thing for breakfast every morning, do you even need to ask? Sometimes, we don't need to use words at all: body language and nonverbal cues often give us the answer before anyone has to open their mouths.
Learn to interpret the ways your loved one is communicating with her eyes, her facial expressions, the way she's moving her body. If she's pacing and wringing her hands, it's likely she's anxious about something. Try to discover the cause and provide relief without launching into a round of questions (maybe turning off the TV or a bright light will help). If he gives you a pained, sad look when you ask him to remember certain things, don’t keep asking him to remember. Just give him a hug or hold his hand.
Consider the ways you’re communicating without knowing. If you look or sound stressed when you’re speaking, you might be passing on those negative feelings to your loved one.
Give yourself a break, and bring in respite care
Answering repetitive questions and having to alter your communication day after day is exhausting.
It's also emotionally exhausting to witness and experience a loved one's decline. The sadness of the situation takes its toll, so don't feel that you've failed because you don't have the patience you'd like to have, or you can't read your dad's body language.
Also, communication will probably get harder as dementia progresses. Keep practicing, but know that frustration may be unavoidable. It’s important that you get help and rest, too.
Consider bringing in a professional caregiver periodically.
A professional caregiver can do something as simple as enjoy a cup of coffee and converse with your mom — or even just to sit with her in silence — so you can have a break. The same caregiver can also help take tasks like appointment reminders, medication reminders and light housework off your plate. All while you rejuvenate and resume your regular role as son or daughter.
The idea of respite can't be emphasized enough. Caregiver burnout is real, and so are its ramifications. Hear from a family caregiver in Here's Why I Wish I'd Hired Home Care Sooner, and get an insider's perspective.
Now more than ever, you’ll need to have friends you can talk to and enjoy conversations that flow with ease. Make sure to give yourself these opportunities to communicate freely, without having to “remember this, do that, try this.”