Keeping Words and Thoughts Flowing
The difficulty of communicating with Alzheimer’s patients can be one of the most frustrating aspects of the progressive disease, alienating caregivers and widening the gulf between loved ones.
But research is backing up what some family members learn on their own: Techniques that use patience, perseverance and a bit of strategy can help reduce the stress on both sides.
At its simplest, the approach to a person with Alzheimer’s should be based on treating the person like a best friend and working from their strengths, not weaknesses, says David Troxel, executive director of the Santa Barbara chapter of the Alzheimer’s Assn.
“We as family members and caregivers and professionals have to try to connect with them. People with this disease in some way need someone to be . . . attentive, empathetic, really try to walk a mile in their shoes,” said Troxel, co-author of “The Best Friends Approach to Alzheimer’s Care” (Health Professions Press, 1999).
Friends know how to make each other comfortable. They know when to talk, when to listen, when to provide visual cues and when to change a subject.
Part of establishing good communication relies on knowing the person’s likes and dislikes, family history, career path and hobbies.
“The fascinating thing to me about people with Alzheimer’s disease is they really retain a desire to communicate,” Troxel said. “We have done a lot of work with early-stage people with the disease. They talk about people not talking down to them, people not ignoring them.”
At Northwestern University in Evanston, Ill., researchers have found that several sessions of family caregiver training, including detailed information about verbal and nonverbal communication, can improve family visits--and patient well-being.
Perry Edelman, a Northwestern professor, said that training increased the time that the person with Alzheimer’s felt good during and after a family visit.
As part of the training, spouses and children were taught to have a plan of activity, plus alternatives, for each visit. Said Edelman: “They were being taught almost to be experimenters of their own.”
He hopes the work will be incorporated into materials for the Alzheimer’s Assn.
The basics of communicating with Alzheimer’s patients remain the same regardless of the stage of the disease, although some techniques work better before the mental decline becomes severe.
In the early stages, one of the goals of communication is to preserve cognitive and speaking skills.
Marlys Meckler, a communication and speech therapist, employs many tried-and-true techniques in talking to people with Alzheimer’s.
On a recent morning, Meckler spent an hour with 10 members of an early-stage Alzheimer’s day-care program at Granada Hills Community Hospital in the San Fernando Valley. Participants wore tags with their first names in large, capital letters to help them recognize each other.
Meckler greeted them warmly, touching each member of the CARE (Center for Aging Research and Evaluation) Club on the shoulder as she made her way around the table. Then, sitting beneath a sign that told participants the day and date, she began a series of exercises to help maintain memory and improve listening and conversation skills.
She pulled out a mini-bottle of bourbon and gave a simple command: “Give it a smell and pass it down, please.”
After the bourbon came a bottle of pink Pepto-Bismol, a jar of coffee crystals and some graham crackers.
“Why do you suppose we’re tasting and smelling?” she asked, before offering a careful answer, pausing between each phrase: “If you taste it, if you smell it, if you see it, you’re more apt to remember it.”
To help bolster their abilities to chat with others, she asked them to compliment the person sitting to their left.
John, a retired television producer, told Marge, a former typing teacher: “You must have been one of the most beautiful people in the world because you are so beautiful now.” Marge blushed in response and others in the group smiled.
Meckler gave gentle hints and clues to those with less ability to come up with something to say.
Karin Marin, who coordinates the CARE Club, also runs support groups for families, whom she teaches to enter the world of the person with Alzheimer’s.
“So many adult children have such a need to orient their parent to their reality so they can feel better. They want to shake the truth into them and that doesn’t work,” she said. “You don’t correct them. You don’t have to tell them that their wife died 20 years ago. It’s like new information. You can be vague.”
Early-stage patients tend to be more frustrated because they’re aware of their limitations, Marin said. Families need to know that as their disease progresses, they live in the moment: “Every day is a new day, every face is a new friend, every activity in front of them is new, surprising and fun.”
As a patient’s ability to articulate thoughts and feelings diminishes, communication necessarily changes.
One specialized technique was developed specifically for the oldest Alzheimer’s patients, those in their late 80s, who still have a need to express themselves, be loved and feel self-worth. For caregivers and family members trying to connect with them, some facilities are trying validation therapy, developed in the 1960s by a Cleveland social worker, Naomi Feil.
Country Meadows Retirement Communities, a group of 10 assisted living facilities based in Hershey, Pa., has begun training its staff in validation, an empathetic philosophy of caring for its oldest Alzheimer’s patients. It uses techniques such as rephrasing a patient’s words and matching the tone and tempo of their actions and emotions to build trust and reduce anxiety.
“In the long run, their dignity and self-worth is increased,” said Rita Altman, a registered nurse who has become a Country Meadows corporate trainer in validation techniques.
Kara Ray, another Country Meadows trainer, said caregivers have found that empathy works better than sympathy.
Instead of attempting to change an uncomfortable subject, aides now address it because they’ve learned the patients will keep coming back to it.
Further, instead of using a “therapeutic lie” to defuse a tough situation, workers now encourage patients to discuss how they feel. If a patient asks about their long-dead parents as if they’re alive, someone trained in validation therapy will ask for details about the parent.
The method uses gentle reassuring touches and mirrored expressions to make patients feel they’re being heard, Ray said.
“We’ve seen people who really weren’t talking very much say things because someone is listening,” Ray said.
