Alzheimer’s Disease (AD) and other related dementias affect an inflicted individual’s ability to communicate. In early stage dementia, the changes are fairly insignificant, but as the disease progresses, the ability to process verbal information and to communicate declines with the progression of the disease. As language skills deteriorate, caregivers and their loved ones may find it increasingly difficult and frustrating to communicate. This communication guide will cover how language is affected in early, middle and late stage dementias, common barriers to communication, benefits of effective communication, and different ways, both verbal and non-verbal, to communicate with an individual with dementia.
Dementia can affect communication in two major ways. It affects the way the person with dementia interprets information and it affects the way the person expresses him / herself. Difficulties with speech are often one of the first noticeable symptoms in people with dementia, particularly those with Frontotemporal Dementia.
In the early stages of dementia, persons may carry on normal conversations, but simply forget a word, use the wrong word, substitute a word that sounds familiar, or have difficulty resuming a conversation after an interruption. These minor communication issues happen to all of us at times.
However, in people with dementia, language problems eventually become more noticeable. Communication problems that were initially just minor inconveniences become much more severe and difficult in the later stages of dementia, as language and conversation become more greatly compromised. It becomes harder for individuals with dementia to remember or to learn new phrases, slang, or expressions. For instance, a person may begin confusing the meaning of words, perhaps saying that he / she doesn’t want to eat “worms” when he / she really is talking about the fish that is being served for dinner. It is also more difficult for people with dementia to hold several ideas in their heads at once. Therefore, they may jump from topic to topic without completing a coherent sentence.
It also becomes increasingly difficult for persons with dementia to understand what others are saying. In addition to not understanding certain words, rapid speech, high-pitched speech, and complex speech all become difficult to follow.
Loss of communication skills follows a different pattern for different types of dementia and varies by individual. Below is a general guideline of what communication difficulties 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 used 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 done non-verbally.|
As dementia progresses, people with dementia may use a set of common phrases or words more frequently, perhaps using the language that they first learned when they were children. It is recommended that caregivers find out what their loved ones’ first language was, and if possible, prepare to speak it with them, if even at a basic level.
In later stages of dementia, this small set of repetitive language may turn into a babble of language to the point that the individual with dementia can no longer express what they want or need with words. Gradual loss of communication is one of the most difficult changes for caregivers, friends, and family members to accept because they might feel that they can no longer understand or connect with their loved one.
Many people who have trouble communicating and have memory problems can remember songs from their youth or years past, since music and melodies are stored in a different part of the brain’s memory center than words. Therefore, singing songs with loved ones with dementia might serve as another way to connect.
In the later stages of dementia, barriers to communication become greater and the ability to communicate may decrease until there is minimal to no communication. Individuals with dementia might use curse words (a strange quirk of diseases that sap language skills) or grunting may replace words. As the ability to form and understand language fades, recognition of the person’s own name may linger longer than understanding of other words. That said, a caregiver’s physical presence may be appreciated long after words no longer make sense or even after the person with dementia no longer recognizes people around him / her. In addition, the person might still be able to understand one’s tone of voice at this point. Touch is also another important means of communication. If the person can tolerate it (and some people cannot), caregivers can give a kiss, hold hands, give a very gentle massage, or lightly brush hair.
As dementia progresses and the ability to communicate decreases, effective communication becomes increasingly more important for both the caregiver and the individual with dementia.
Speech difficulty, or “aphasia,” is common in people with dementia, and as mentioned previously, may even be one of the first symptoms noticeable. Again, problems may range from simply forgetting a word to having trouble with following a conversation. Just because a loved one is not carrying on conversation as he / she once did does not mean that he / she isn’t listening or doesn’t want to engage. Often times, the individual with dementia cannot recall the word he / she wants to use. The part of the brain responsible for memory and learning new things is compromised. Fortunately, there are a number of things one can do to aid the inflicted individual in speech:
Problem: People with dementia have trouble understanding others.
Solution: Speak slowly, with proper pronunciation and grammar.
Problem: People with dementia have trouble holding multiple thoughts in their head.
Solution: Avoid lengthy streams of conversation and going off on tangents. Instead, try focusing on one idea or short story.
Problem: People with dementia commonly confuse or mix up words.
Solution: Anticipate this by following the other aspects of a loved one’s conversation to figure out what the individual is trying to say. Don’t be afraid to ask him / her if he / she really meant another word, but avoid over-correcting.
Problem: People with dementia take longer to process language.
Solution: Be patient. The person may just need more time to respond.
Keep the following suggestions in mind when talking to someone with dementia:
Below are some general guidelines for listening to someone with dementia.
Communication is more than just language and speech. Non-verbal communication is increasingly important as an individual’s dementia progresses. This may include hand gestures, body language, facial expressions, eye contact, touch, and even actions. For people with dementia who get frustrated or angry when having a conversation or can no longer find the words to express themselves, non-verbal communication can still be an efficient way to connect with others.
Try using non-verbal communication to do the following:
Not only is communication a rewarding endeavor in itself, as it provides ways to share experiences, thoughts, and feelings, but it is also crucial to ensure that the person with dementia is comfortable and safe. Effective communication also has a myriad of other benefits, as follows: