Communication is how we maintain our relationships, so when dementia robs the ability to speak and understand it can strain the bonds between caregivers and their loved ones.
If two people can’t talk, how do they get along? Here we will define and understand the problem, and explain some solutions. Planning a strategy to communicate is crucial in maintaining personal connections, and in becoming a better caregiver.
As Alzheimer’s disease and other related dementias destroy brain cells, a significant symptom, known as “aphasia,” is losing the ability to speak and to understand speech. Aphasia worsens as the disease progresses. It becomes harder to remember the right words and process what others are saying. Difficulty speaking is one of the first noticeable symptoms in people with dementia, particularly those with Fronto Temporal dementia.
Dementia takes years to advance over stages, the symptoms worsening in each subsequent stage. In early stages, someone can carry on normal conversations but will simply forget a word or use the wrong words. Resuming a conversation after an interruption becomes difficult. These communication hiccups happen all the time to most people, but dementia affects the brain so that language problems become more noticeable. Someone with Alzheimer’s, for instance, won’t remember phrases, or be able to learn new phrases. Slang and common expressions become hard or even impossible to remember. Someone with dementia may start confusing the meaning of words, like saying “I want worms for dinner” instead of asking for a favorite meal, or calling a computer “the picture.” It is also more difficult for people with dementia to hold multiple ideas in their heads at once, so they may jump from topic to topic without completing a coherent sentence.
Additionally, understanding is affected. The words coming into a brain with Alzheimer’s are as confusing as what’s coming out. If someone speaks quickly – or in a high-pitched voice, or has an accent, or uses complex speech – a person with dementia will probably struggle to follow along.
Loss of communication skills follows a different pattern for different types of dementia and varies by individual. Below is a general guideline of what to expect in the different stages of dementia:
|Communication Skills Loss Through the Stages of Dementia|
|Early dementia / Alzheimer’s||Some difficulty concentrating and following conversation; difficulty finding the right words when speaking or writing; losing train of thought when speaking; repeating oneself. Usually the person with dementia is aware of these problems and may try to hide or overcompensate for them.|
|Moderate or mid-stage dementia / Alzheimer’s||Difficulty following along with group and one-on-one conversations; losing train of thought when speaking; increased difficulty finding the right words when speaking or writing; loss of vocabulary, like proper nouns and slang terms; substituting words that sound the same or inventing new words; difficulty following storylines in books, TV shows, or movies; difficulty following directions; poor recall when telling others about recent events; increased use of gestures to communicate.|
|Severe or late-stage dementia / Alzheimer’s||Inability to follow along with anything other than simple conversations and instructions; increased loss of vocabulary, including personal information and loved ones’ names; inability to follow storylines in books, TV shows, or movies; tendency to talk about nothing, rambling, or babbling.|
|End-stage dementia / Alzheimer’s||Inability to speak or otherwise respond verbally; difficulty or inability to understand when spoken to; all communication may be non-verbal.|
Communication is how we understand and how we are understood by others, and the loss of the ability to speak or process speech correctly is absolutely devastating for someone with dementia. Worse, the breakdown of speaking ability can strain the relationship between you, as caregiver, and your loved one. Caregiving is emotional and difficult, and caregiver stress is unfortunately a very real phenomenon.
Caring for a loved one with dementia requires patience, strong listening skills, planning, and the willingness to be flexible. Confusion and misunderstandings are unfortunately common and can lead to frustrations for you, as caregiver, but especially for your loved one. Understanding and positivity are vital in all facets of caregiving, but especially with communication.
What follows is tips and strategies for maintaining communication with your loved one, even as it becomes harder and harder over time. Try, above all, to be kind, and remember that they may not know what they’re saying, but you do.
Speak the Language
People with dementia have been known to revert to their first language as they lose the ability to speak. If your loved one grew up speaking a different language, prepare to speak as much of it as you can.
People with dementia remember songs, because music and melodies are stored in a part of their brain unaffected by the disease. Singing, therefore, is a way to connect. Listening to favorite albums together can also be useful. (For more on how music helps with Alzheimer’s disease, click here.)
Turn the radio or television off, and remove things from sight that are distracting. If possible, sit down face-to-face in a quiet, calm place.
If they don’t see you coming, engaging someone with dementia can elicit anxiety or aggression. Approach from the front to allow time to process.
Identify yourself before starting a conversation, and refer to the person by name. This gets attention and awareness, and reminds your loved one who you are.
As soon as your loved one starts speaking, listen carefully and anticipate which words may be mixed up, so you can help find the right word without overcorrecting.
Particularly in the early stages, problems understanding can be helped by simply speaking slowly, with proper pronunciation and grammar.
One at a Time
Because people with dementia have problems with multiple thoughts at once, focus on one idea or short story at a time.
Use basic language and keep anecdotes and stories brief. Discuss one topic at a time. Avoid slang, nicknames, and idioms. Only use simple explanations, and avoid logic and reasoning beyond the very basic.
Reminiscing can be healthy, but avoid asking, “Do you remember when…?”
No Baby Talk
Don’t speak in cutesy voices, or in a way that could make your loved one feel minimized. “Baby talk” is for babies.
Use positive, rather than negative, expression. For example, instead of “Not like that” say “Try it this way.”
Stay relaxed to keep the person with dementia relaxed and comfortable. Use positive body language and gestures. Maintain good eye contact.
Someone with dementia may need time to find the right word. Let your loved one think and speak without interrupting. Expressing impatience or frustration will cause more frustration.
It’s okay to repeat information and questions. If your loved one doesn’t respond, wait a moment and ask again.
Encouraging someone to take time could give a boost in confidence. Try saying, “It’s important to me to hear what you have to say. Just take your time.”
Arguing with someone who has dementia is pointless and counterproductive. Even if you disagree, be agreeable and just change the subject. Also, don’t point out when words or names are used incorrectly; just go with it.
If you don’t understand, try guessing what your loved one is saying, or ask them to point or gesture. Focus more on the overall message than the literal words being spoken. Reading body language and emotions can be useful.
Communicating with hand gestures, body language, facial expressions, eye contact, and touch will be increasingly important as dementia progresses. Try the following:
If you ask your loved one about eating something, point to the refrigerator or pantry to reinforce the message.
Nod For Yes
Express agreement or disagreement by nodding “Yes” or shaking your head “No,” even as you’re saying these words.
Better Than Words
If you can say something without actually saying it, do so. A warm smile or huge conveys a message just as strongly as words.