Dementia Communication: Your Go-To Guide for Connecting

Communication is the key to connecting with our fellow human beings – whether it’s a new friend or someone you’ve known your whole life. But as anyone who has a loved one with Alzheimer's disease or another form of dementia knows, communication can often become difficult as the disease progresses. In fact, it’s probably one of the hardest things for family and friends to accept – and understand.

Conversational changes are often one the first signs that something isn’t quite right. You may notice some forgetfulness, repetition, or increased word-searching. And as the disease progresses, communication becomes more difficult, making it harder – both practically and emotionally – on both of you. For caregivers especially, the ability to communicate effectively is crucial to your ability to manage care duties.

Why is communication so hard for dementia patients?

The science part is (relatively) easy to understand. Dementia is caused by abnormal changes to the brain – hindering communication between brain cells. The result? The person's ability to process thought, emotions, body language and even behavior can all be affected. So too can other elements of their experience of the world, frequently leading to confusion and distress. 

While Alzheimer's disease is the most common form of dementia, there are actually several different types of dementia, each with its own specific characteristics - and all share the chief symptoms of memory issues or memory loss, along with decline in problem-solving and language skills. While loss of working and long term memory is usually one of the early identifiers of the disease, communication difficulties are often another signal.

In the early stages, changes may be minimal. But as time goes on, the person with dementia may find it hard to follow directions. They may not be able to get to a place they’ve gone many times before – or remember how to play a favorite card game. Working the microwave may suddenly become daunting. Even the process of putting toothpaste on a toothbrush can be a challenge. As dementia reduces their ability to remember and understand simple information about everyday activities, it’s easy for non-professional caregivers to become frustrated with having to continually repeat information or instructions.

How relationships change when a family member has dementia

It’s only natural for these changes to affect relationships. You may find yourself becoming a caregiver for a parent or partner. And the change in those dynamics can be overwhelming. It may feel embarrassing for the person with memory issues to be "needing care.” One former social worker described her frustration and sadness with her disease this way: “It’s hard for me to be the one asking for help – I’m used to being the caregiver.”

Or it may be that the role of caregiver changes the long-held dynamic between two people - like a husband and wife or parent and child. In all cases, dementia will cause a re-ordering of existing dynamics and relationships, and this is a natural outcome of the disease. It's perfectly normal to feel a sense of loss or resentment, or both - and more.

Relationship changes when a family member has dementia often shift over time, as the disease progresses and the patient’s experience of the world changes. Because of this, family members may need to regularly readjust and look for new ways to connect with their loved one. 

Common changes in communication caused by dementia

So, how exactly does a person communicate with someone who has dementia? Communication is difficult - not just for the person with dementia, but for the friends, family members, and loved ones of that person. According to research from the National Institutes of Health, there are some commonly observed changes in language among dementia patients. Here’s an example of what to expect:

• Trouble remembering words
• Using the wrong word or substituting a word
• Describing a word in place of the word itself (e.g. “the white drink” for milk)
• Beginning a comment and losing the train of thought, or other memory issues
• Repeating questions, comments, or stories
• Using more hand gestures
• Frustration with the difficulty in speaking
• And finally, speaking less – or withdrawing from conversations entirely

14 do's and don'ts for communicating with dementia patients

So what can you do? First and foremost, try to be patient. Be mindful of the fact that it’s Alzheimer's disease or dementia that’s causing these changes, not necessarily the person.  Remember too that effective communication approaches will vary depending on the stage of dementia and the individual. Because of this, it may take trial and error to find the best approaches and adaptability is often needed.  

Here are 14 conversation tips to make communicating more enjoyable and less frustrating for both of you.

• Do be patient. This one can’t be stressed enough! Whether the challenges are related to communication, attitude, behavior, or eating, caregivers and family members will at times find it difficult to stay patient and engaged - and this is all normal. As safety allows, if you need to leave the room, go for a walk, take time to eat, or anything else that you find self-soothing - do it! You will be a better support and resource for your loved one when you are in the right frame of mind.
• Do make eye contact and use non-verbal cues or body language to encourage engagement. Try to face the person while engaging in dialogue and relax while waiting for responses.
• Do speak slowly and simply when talking to a family member or loved one. Speak with clarity and use simple sentences and words. Avoid complex sentence structures.
• Do allow time for their response. Those with dementia take longer to process information, so expect a lag time. And listen closely.
• Do offer suggestions regarding what they’re trying to say if they are clearly struggling to find words.
• Do use non verbal communication , such as a gentle touch, maintaining eye contact or leaning toward the other person while they are talking.
• Do provide reassurance with small pats on the shoulder or back, or guide them in a direction by gently grabbing the back of their elbow and pointing.
• Do promote agency. As the dementia progresses, limit questions to those requiring a yes or no. Encourage involvement by offering (easy) choices.
• Do keep it positive. Avoid criticism and corrections that will just increase frustration.
• Do adapt if a question or prompt is clearly not being received. Try asking your question another way if you feel you're not being understood, but remember that what you’re asking may be beyond your loved one’s abilities.
• Do use visual cues if your loved one is struggling to manage instructions. Printing or drawing pictures or symbols that represent objects may be helpful for those with declining communication skills. This could be something as simple as laying out an outfit instead of saying "go get dressed". This is a great site with resources to support visual cues communication techniques.
• Do not argue or challenge their statements or feelings. Acknowledge that this is their reality at the moment and sympathize with how they must feel. It’s ok to affirm their questions or statements, respond or ask gentle questions. You may learn a lot.
• Don't patronize. While your level of speech may be simplified, avoid patronizing tones, "baby talk" or other infantilizing communication techniques. 
• Don't overstimulate. If you want to hold a conversation, limit the number of auditory distractions that are present; turn off the tv or radio, set aside devices like laptops or cell phones. While this advice we can all heed, it's especially important for those with cognitive issues as their ability to tune out external distractions is often limited.

Tips for children on communicating with dementia patients

All of this is good advice for adults, but what about when children or younger adults are around someone with dementia? Children may be confused or upset when a relative or neighbor begins to exhibit signs of dementia – especially if it’s someone they’ve known for a long time. Teenagers and young adults may avoid visiting loved ones with dementia because the changes make them uncomfortable. They may prefer to remember them as they were in the past. Or they simply may not know how to communicate. After all, we're taught that how a person communicates with others is key to understanding their character, right?

9 activities for dementia patients to do with young children

The National Institute on Aging (NIA) suggests that when children visit a loved one or acquaintance with dementia, sensory stimulation and a focus on hands-on activities may provide a more natural way of connecting. Make sure to prepare children and young adults for changes they are likely to observe, and plan a few activities that children can lead before the visit. If you're a parent or guardian of a young child, try your best to make sure your body language is relaxed and stress-free, as young children may be especially sensitive to stress.

Here are a few of our favorite sensory activities for children and adults with dementia to do together. Some trial and error is needed here too, as the best activities will depend on your loved one’s stage of dementia and their personality.

• Puzzles are a collaborative and fun activity for those with dementia. Not only do they strengthen cognition, but they provide a sense of accomplishment for both older adults and young children. Some are also designed specifically for people with dementia. 
• Arts-and-crafts projects like paint-by-number kits, magazine collages, painting rocks, painting a still life, or making slime or play-dough can be fun and rewarding for kids and seniors alike. This kind of hands-on activity allows for meaningful nonverbal communication.
• Look through old photo albums, or have teenagers share their instagram feeds and narrate what they're sharing. It doesn't always have to be "one-way" communication, and it's important for children to feel encouraged and equipped to share their lives as well.
• Play music. See how many songs older adults and children both recognize, or have each share their favorite songs. It’s fairly common for people with dementia to remember the words to familiar songs quite far into the progression of the disease. Play some traditional songs (or even carols) that both participants would know and then sing along. Toe-tapping and clapping is encouraged!
• Play balloon tennis. Blow up a balloon and volley it from person to person. This is one of those low-stakes, failure free activities!
• Blow bubbles- especially if you are outside with young children, this is an activity that is sure to put a smile on everyone's face.
• Play with dolls. As there is some evidence that doll therapy has positive benefits for dementia patients, playing with dolls is a natural activity for younger children to connect with a family member with dementia. This is true for men with dementia as well.
• Go online. Children may want to share their favorite simple online game apps, such as Slither, or Snowball, or pizza maker, or any number of piano apps.
• Share a good book. As a person’s dementia progresses, they often find it difficult to read – but that doesn’t mean they don’t enjoy a good story. Younger children may want to practice their reading skills, while older children or young adults might have a favorite book they’d enjoy reading aloud. It’s not so much about the activity itself, but rather the bond that is formed by reading and listening. This is true for men with dementia as well.

10 questions to ask someone with dementia 

Interaction through questions can be a fun way to connect and communicate between loved ones of any age. You might want to start by sharing some of your own favorite memories, and “favorite things” to get them going. Try these fun conversation starters to inspire memories and get the conversation rolling.

• Did you ever have a pet? What kind?
• Do you like to shop? What’s your favorite store?
• What was your favorite food growing up? Do you cook or bake? What kinds of things?
• Do you have a favorite family vacation?
• What’s your favorite TV show or movie? Kind of music? Did you ever play an instrument?
• What’s your favorite time of year? Why?
• Who was your best friend growing up? What kinds of things did you do together?
• What was your first job? What did you like about it?
• What was your mother or father like?
• Do you have any hobbies?

How to talk with someone with dementia

Unfortunately for many patients in the late stages of dementia, language skills become increasingly difficult and those with the disease can become non-verbal, often withdrawing from social interactions. It’s no surprise that caregivers may also withdraw from regular interaction. In fact, for many late-stage dementia patients, a memory care facility is beneficial not only for the patient but also for the family members and loved ones. But even if you have professional caregivers managing care, it's important to still visit regularly to maintain connection.

In fact, studies have shown that finding ways to improve communication can help both parties, as non-verbal communication can help those with dementia maintain positive interaction with others. While many of the recommendations are similar to what's listed above, we're highlighting the most important ones here:

Use touch. Offer a hug or a hand massage while you talk, brush their hair or give an at-home manicure. Studies show that human touch is incredibly important to overall health, and it can easily be overlooked as we transition from family member to caregiver.

Pet therapy. It's no surprise that animals can provide a lifeline to an older adult with cognitive and communication challenges. If you don't have a suitable pet of your own, there are actually organizations that provide pets for therapeutic visits.

Ask simple yes or no questions where dementia patients can answer by a nod or shake of the head.

Tactile Stimulation. think about sensory activities like knitting or sanding wood, folding laundry or organizing silverware, pens or pencils.

And finally, never underestimate the joy your smile brings to them!