Clear communication can be a challenge for anyone but add dementia or Alzheimer’s into the mix and it seems to become an even bigger, more frustrating obstacle to overcome.
As a caregiver, it can be difficult to remind yourself that your loved one’s brain is deteriorating. It is not their fault they cannot communicate clearly with you as they did before the disease took hold.
No matter what stage of the disease the person is in make sure you communicate to them as a person, said Debby Montone, community nurse educator, Alzheimer’s Association, Greater New Jersey Chapter. Caregivers need to be very self-aware of their body language, facial expressions, attitude and tone of voice when talking to someone.
Although someone with dementia might not be able to communicate with you, they can still understand these unspoken signals. They can sense these signals and can impact the person’s feelings and be hurtful.
Emotions do not fade the way communication skills do. Caregivers need to be aware of this and have the tools to connect with their loved ones on an emotional level. The one thing the caregiver can control is their actions and responses to their loved one.
There are three distinct stages to the communication changes that happen during the progression of dementia, according to Brad Trout, Alzheimer’s Association volunteer community educator, during the recent Virtual Dementia Symposium: Connecting the Community, hosted by the Alzheimer’s Association Delaware Valley Chapter.
Trout compared communication changes to a young person who is learning to talk and express themselves, but in reverse. These individuals must be respected as the adults they are because they retain their sense of self and emotions while the communication capabilities regress.
In the early stages of the disease, those with dementia can get their thoughts and feelings across with words and are generally able to make decisions about their future care.
Caregivers may notice their loved ones struggling to find the right words to match their thoughts or they may take longer to respond during a conversation. They may misinterpret what someone says to them as their brain struggles to keep up with a conversation.
They may withdraw from a conversation as they lose their ability to follow the dialogue. Keep in mind, hearing loss may also be a factor and something else to be aware of.
You may also see your loved one beginning to struggle with decision making and problem-solving.
Some communication tips include keeping your sentences clear and straightforward while leaving plenty of time for conversations. Treat them as the person they are and include them in conversations that affect them, including their plans for the future while they still can make decisions and communicate their wants and needs.
Early-stage dementia or Alzheimer’s typically lasts a few years.
Middle Stage (Moderate)
The middle stage can be especially frustrating. This is where a caregiver may find themselves repeating the same thing over and over or their loved one asking the same question again and again. This is all normal.
Answer their questions as many times as they may ask. It is their way of processing information and no, they cannot remember they just asked you the same thing two seconds ago. Redirection to an activity is one technique to help break the cycle of the repeated question by giving them something to focus on.
Dementia changes include increased difficulty in finding the right words to express themselves, decline to use basic words and sentences and invent new words or descriptions for everyday items. They easily lose their train of thought as the brain struggles to process thoughts.
They may begin to communicate through behaviors rather than words. Behavior evolves into a form of communication for them. An example of this can include tugging on a blanket if they cannot express they are hot.
This is similar to how a toddler is learning to express themselves but in reverse.
To improve communication with someone in the middle stage of dementia, a caregiver must approach them straight on so they can see them coming and anticipate trying to communicate. This will also help them be less startled by someone approaching. Identify and introduce yourself to them.
Make eye contact with them to show that you recognize them as a person and take your time and pay attention to your tone when speaking to them. Getting on their level if they are seating or reclining helps foster a connection.
It is exceedingly difficult to avoid criticizing, correcting them and arguing with them. This is a battle you are not going to win, so try and put yourself in their reality. Acknowledge their emotions and use their emotions to connect. Focus on their feelings, validate them and reassure them that you understand.
For example, when they ask for someone who may have passed, redirect them to talking about their memories of that person instead of trying to tell them they died, which could set off a grief cycle as they relive the event.
Remember to slow down your communication and repeat yourself several times if necessary—they often need more time for their brain to process what you are saying. Give them simple choices instead of complex ones—would you ask a 3-year-old if what they wanted to wear, or would you pick out the entire outfit for them and ask if they wanted a pink or blue shirt?
These changes are gradual and can happen over a few years to as long as 12 to 15 years.
Late Stage (Severe)
In the last stage of dementia, communication is reduced to a few words or sounds. Caregivers may see some responses to familiar words or phrases.
Listening is important because caregivers need to be on the lookout for expressions of pain or discomfort as their loved one cannot say “this hurts.”
Continue to respect them as a person and keep talking to them. Your voice can be very soothing to them, making them feel safe and happy. The tone, sound and love you put in your voice establishes a connection with their emotions.
They might not be able to remember your name, but they do recall how you make them feel.
Focus on the senses and connect through touch, listening to music, looking at photos or home movies. Sound is important-use it to connect them with their life. For example, if they grew up in the city, you could play city sounds to remind them of their childhood.
No matter what stage of dementia or Alzheimer’s someone is in, they must be respected as the adults they are. They are still who they are but just cannot express it with words. They still have emotions and caregivers must respect that, connecting through emotion.
Additional resources can be found at alz.org, communityresourcefinder.org and 1-800-272-3900.