What would it be like to lose your 'words', to be unable to remember a phrase or the name of your children? When will you learn your last 'new word' and struggle to even recall the ones that you learned very early in your life? What if losing these words was just the tip of the proverbial iceberg? What about when you eventually can't understand what others are saying to you or the stories they tell are too hard to follow, words are too complex, the environment too overwhelming and you can't listen for more than a few seconds? What about when words no longer come for important needs like a drink, a sweet or a walk in the sun?

Difficulty with communication is often the first noticeable symptom of people who have Alzheimer's disease and other dementias and is listed as one of the 10 Warning Signs of Alzheimer's disease.

As Alzheimer's disease and most dementias are progressive, so is the communication decline. In the early stage of the disease, individuals may have some residual problem solving skills that allow them to 'find another word' or find a way around the communication break down. But, as the disease spreads to more areas of the brain, skills related to problem solving and organization are also deteriorating. Although communication is affected early-on in individuals with AD and other dementias, the course of the decline and subsequent understanding and expression is a little different for each individual. Characteristics are widespread and include:

&bullUsing a substitute word or phrase for one that cannot be 'found'

&bullTalking fluently but not making much sense (also known to some as 'word salad')

&bullProblems with short term memory leading to thoughts or words being repeated again and again

&bullBeing unable to understand what is being said or only grasping part of it

&bullA deterioration in writing and reading skills (that's right, even other forms of communication are effected)

&bullLosing the 'normal' social aspects of communication including turn-taking (leading to interrupting), losing track of the topic, ignoring the person speaking and not responding to communication from the speaker

&bullPerseveration of certain words or topics

&bullDifficulty expressing emotions

&bullFrustrations leading to commonly occurring difficult behaviors such as yelling out, hitting, shutting down and other challenging behaviors

Thankfully, communication is not composed of just the spoken word but can be verbal or non-verbal and is made up of three parts:

-Our body language (the message conveyed through facial expression, posture and gestures) 55 %

-The tone and pitch of our voice 38 %

-The words we use 7 %

The responsibility to ease the communication breakdown is ours and, knowing that 93% of every spoken communication is expressed through body language and the voice, there are many ways to adapt the communication style with a person with Alzheimer's and dementia to increase their understanding and processing. Also, reading the body language and vocal cues of a person with dementia, will make things much clearer then only listening to the words spoken or attempted.

&bullDifferent communication techniques and strategies work for each individual depending on their cognitive levels and needs. As the disease progresses, new techniques will need to be discovered.

&bullIt is essential that we become creative listeners-watching and listening to both verbal and nonverbal communications. It may not be what you hear but what you see that tells the whole story.

&bullEye contact and a light touch are great ways to let a person know that they are being heard.

&bullShow interest, don't interrupt, don't correct or disagree. Remember, individuals with dementia often can not remember recent events, even ones as devastating as a death in the family. Correcting or contradicting, or even arguing can lead to catastrophic reactions like yelling, crying and even striking out.

&bullLook for the possible underlying meaning behind a statement. A person looking for their mother may be feeling lonely or in need of whatever emotional support they got from their mother. A person opening every door may need one of many things such as the bathroom, some alone time, a walk outside, or just about anything not in the current room.

&bullBefore talking, be sure there is eye contact, identify yourself by name and call the individual by name.

&bullSpeak slowly, clearly, and in a low pitched voice. Look open and happy, inviting conversation and an exchange. Remember this is a personal interaction and not a drama session.

&bullBreak down any tasks into clear and simple steps. Use your body language to increase the likelihood that you will be understood.

&bullAvoid open ended questions ("What did you have for lunch? What did you do last night?"). Don't ask questions that require an intact memory. Oddly enough, most of us feel driven to ask, ask, ask. Turn the conversation around, better yet, have a conversation, about something meaningful. Pick something the individual has always been interested in like cars or gardening.

&bullRepeat, rephrase, or change the subject if the communication is not understood. Is it really important to the individual with dementia? If not, move on.

&bullAllow plenty of time for a response, be it through words or actions. Be patient, remember the 93% that can be read through your body language and you vocal tone; impatience speaks volumes.

&bullRemember, it's the simplest expressions of caring that communicate love and appreciation. A smile that says 'I know you and I'm glad you're here' and a hug or hand on the shoulder say volumes more than words.

Currently 1 in 8 people, 13%, of all Americans 65 years of age or older have Alzheimer's disease and this number is growing exponentially as the baby boomer generation nears the 65 year mark. Ten million baby boomers are expected to develop Alzheimer's disease in coming decades while another 4 million will suffer from vascular dementia, Lewy body dementia, and other diseases affecting memory and judgment. These numbers are staggering and growing everyday. Much research is underway which will someday obliterate the disease altogether. However, for now, it is our responsibility to ensure that all individuals in the United States receive the best care possible until a cure or vaccine is found.

In the United States, May is designated 'Better Hearing and Speech Month' as a means to raise awareness about communication disorders and promote treatment and interventions that can improve the quality of life for those who experience problems with speaking, understanding, or hearing. All too often, the older population of the U.S. does not receive the attention that other individuals may get. Be there, communicate, listen, PAY ATTENTION. Individuals with Alzheimer's disease and other dementias need you to listen to be heard.

Grace M. Burke,M.S.,CCC-SLP

Alzheimer's Care Group