Sister Rosemary Goulet, a nursing home administrator and expert in elder health care, led a workshop for caregivers of people with dementia and Alzheimer’s disease. — Kathleen Ogle photo
Communication with Alzheimer's
By Kathleen Ogle
Managing Editor
PISCATAWAY — Communication between two people is usually a ‘two-way street,’ involving give and take by both persons. But when a person has Alzheimer’s disease, communication is no longer an even exchange. Those responsible for providing care to persons with Alzheimer’s must adjust their style of communication, according to an elder care expert.
“As the disease progresses, caregivers continually have to adjust their communication styles and expectations,” said Sister Rosemary Goulet, a member of the Servants, Sisters of the Immaculate Heart of Mary.
Sister Rosemary, a licensed nursing home administrator with 20 years experience in the field of elder health care with master’s degrees in health administration and counseling from St. Joseph University, Philadelphia, led a seminar about dementia and Alzheimer’s at the St. John Neumann Pastoral Center Aug. 20.
During the seminar, which was sponsored by the Diocese of Metuchen’s Office of Family Life, Sister Rosemary outlined the signs and stages of Alzheimer’s disease and also provided practical information for caregivers.
“I think an awful lot of working with a person who has dementia, and Alzheimer’s specifically, is understanding what they’re going through,” she said. “If you understand, believe it or not, you have a handle on what to do.”
Normal communication usually involves understanding the meaning of words, comprehending body language, interpreting tone of voice and reading facial expression.
However, persons with Alzheimer’s disease typically develop a condition called aphasia, the inability to communicate. The condition may manifest itself as expressive aphasia, the inability to speak, or receptive aphasia, the inability to understand speech.
Lacking the ability to comprehend verbal communication, persons with Alzheimer’s rely on body language, tone of voice, facial expression and other forms of non-verbal cues.
“Setting the right tone makes all the difference in communicating with a person who has Alzheimer’s disease with some receptive aphasia,” she said.
It is easier to recognize when a person has expressive aphasia: They can’t get the words out or can’t get the right words out. It’s difficult to spot a person who has receptive aphasia, she said.
“They’ll try to cover it up. They don’t want to admit that they don’t understand what you’re saying,” she said.
When people with Alzheimer’s don’t do what is being asked, it’s not because they are stubborn or uncooperative; rather it’s because they don’t understand what is being said.
“You may have to gesture, or you may have to prod the person,” she said.
Not only is it possible to cover up receptive aphasia, “a person who is experiencing receptive aphasia may not be able to tell you that they are experiencing this, that they don’t understand,” she added.
With Alzheimer’s, it is possible to speak and not understand what one is saying; it is possible to read and not understand what one is reading; it is possible to write and not understand what one is writing. And the situation worsens as the disease progresses, she said.
“As much as a problem a situation is today, just know that in a few days or weeks it may be worse,” Sister Rosemary said.
When a person experiences receptive aphasia they may become fearful, even combative or agitated, because they do not know what is going to happen to them.
“The more you may try to explain doesn’t mean they are going to get it, not with words. It’s going to be the demonstration and behavior,” Sister Rosemary said.
Communication tips
Since people with Alzheimer’s do not understand what a caregiver is saying, they will often respond to questions by saying, “No.” Therefore, Sister Rosemary suggests giving them a choice and always giving the preferred option last.
“You can control the situation by making sure it’s the second or last thing he hears and he’ll choose that,” she said.
Sister Rosemary advised caregivers to be sensitive to people with expressive aphasia, particularly following a stroke.
“Their words may be mixed up, but that does not mean their thinking is mixed up,” she said.
When communicating with persons with Alzheimer’s, Sister Rosemary recommends the following:
• Use a calm, gentle and slow speaking voice and establish eye contact.
• Use short sentences and keep it simple.
• Call the person by name.
• The caregiver should always identify his or her self.
• Approach from the front and never surprise.
• Speak at eye level; don’t stand over a person when talking to them.
• Try not to interrupt; one person speaks at a time.
• Always allow enough time for the person to process information.
• If verbal communication is not understood, try pointing or demonstrating.
• Eliminate distractions such as background noise and activity.
• Use gentle touch if it is tolerated.
She strongly discouraged the use of baby talk — “These are adults who have brain damage,” she emphasized — as well as elder talk (for example, “Would we like to take a shower?”).
Rather than arguing with a person who is agitated, she recommended relating to the person’s feelings. So if a man is upset because his wife, who died many years earlier, is not there, it would be more helpful to talk to him about what it was like to be married and how much he misses his wife.
“That you can talk about, that he can relate to,” Sister Rosemary said. “He’s not going to understand that she died 10 years ago. When you have an Alzheimer’s person, a lot of times you have to talk about the reality of feeling.”
Since persons with Alzheimer’s have no memory of recent events, Sister Rosemary suggested talking about people and events from the past. A person with Alzheimer’s may enjoy looking at photos from the past as well as listening to music from the past, which can be soothing and therapeutic.
Persons with Alzheimer’s may also exhibit behavioral problems triggered by fear, hunger, thirst, fatigue, frustration, pain or medication side effects. Physical discomfort may be caused by clothing that is too tight, toileting needs or an environment that is too warm or cold. Loud noises or a busy environment can cause overstimulation. Unfamiliar surroundings or the inability to communicate effectively or complete an activity can lead to frustration.
In the last stage of Alzheimer’s a person experiences agnosia, the inability to recognize faces, and this can be especially heartbreaking for family members and friends, Sister Rosemary said.
But while they can’t identify their husband, wife, daughter or son, they may be able to recall all kinds of factual information about their husband, wife, daughter or son.
Although people with Alzheimer’s disease may not recognize their spouse, children or friends, it is important to visit and spend time with them.
“They may not remember who they are, and they may not remember you, but you do remember who they are and you verify who they are,” said Sister Rosemary.”
“The legacy they leave is not what they are able to say, but it is what we know about them and what we share with the world about them.”
Editor’s note: Part one, “Understanding Alzheimer’s,” of this two-part article appeared in the Aug. 28 issue. To read part one, click here.
