Bridging the gap: Dementia communication strategies

It's so routine that Katherine Lyman can easily summon the scenario: flanked by a family member, a dementia patient walks into her office and effectively becomes invisible, her thoughts deemed irrelevant. "Don't bother asking her any questions," the relative tells Lyman, a geriatric nurse practitioner at Harvard-affiliated Beth Israel Deaconess Medical Center. "You're not going to get the answers you need."

The situation serves as a prime example of how not to relate to someone with dementia — by transmitting they're no longer capable of speaking for themselves. But Lyman won't align with that attitude, countering by looking at and speaking with the patient and listening to her responses.

"Just because someone has cognitive impairment, they're no less than anyone else," Lyman says. "Yes, their cognitive abilities are less than they were, but everyone should be treated with respect."

Millions of American families face daily interactions with someone whose memory and thinking skills are progressively declining, and women are at the center of this issue. Nearly two-thirds of the seven million Americans with Alzheimer's disease (the most common type of dementia) are female, and more than 11 million women live with or care for someone with the condition, according to the Alzheimer's Association. The numbers are even greater when you add in other types of dementia.

Mismatched messages

Communicating with someone who has dementia is a fraught and tricky process, especially because a patient's ability to understand others and express themselves can fluctuate from day to day or even hour to hour, Harvard experts say.

"If you think of the brain as millions of little electrical circuits with messages going from one area to another, a brain with dementia has areas that are clear and areas that are clogged up," explains Dr. Suzanne Salamon, clinical chief of gerontology at Beth Israel Deaconess Medical Center. "Sometimes the electrical signals can find a clear path, and the person can answer more clearly; other times, messages get stuck. You don't know what you're going to get on any given day — and it's hard."

Relating to someone with dementia depends at least in part on which stage of the disease they're in. "If their dementia is still mild, that's different than when they're in later stages, where someone may not be verbally communicating," Lyman says.

When communication between the two parties gets muddied, the consequences are typically felt on both sides. Frazzled nerves can lead to lost tempers, fraying the bond between caregiver and patient.

"When there's a mismatch in communication, it can generate frustration," Lyman says. "The person with dementia may be overwhelmed; the caregiver can get upset. When you're struggling, it takes so much patience."

Transcendent tactics

Across the spectrum of cognitive impairment, certain communication strategies can smooth interactions between caregivers and dementia patients. Harvard experts suggest these approaches:

Be an active listener. Look directly at them while speaking, nod affirmatively, and use other body language to let them know you're tuning in. "Try to remain fully engaged, even if it's only for five minutes," Dr. Salamon says.

Active listening may also involve gently rephrasing the person's wording if something seems garbled. "Can you detect a thread that you can reframe and ask, 'Am I hearing this correctly?'" Lyman asks. "That may help."

Don't confront. If, for instance, you ask Mom if she took her pills and she says yes—but you notice the medication is still in her pillbox — avoid a standoff, Dr. Salamon advises. "Instead of saying, 'I can't believe you lied,' or 'Look, you forgot,' you can wait a few minutes and say, 'It looks like your pills are still in your pillbox — why don't we take them now?' and not even refer to her forgetting," says Dr. Salamon. "If it's not an emergency, just drop it for a few minutes and come back to it as if you haven't talked about it before."

Agree with their reality. Trying to correct someone whose perceptions are altered by dementia never brings them back to your reality, Lyman says. It just leaves them indignant. "If they say something is black and you know it's white, it's black," Lyman says. "You go with their flow."

Remove distractions. Even someone without dementia may struggle to listen and speak when the TV or radio is on or kids are running around. These stimuli are even harder to field for someone with cognitive problems. "If you're trying to have a conversation, pick a place where there's minimal distractions, a quiet place, one on one," Lyman says.

Use shorter sentences and smaller words. Dementia patients often can't absorb much information at a time, so keep language simple. Break any tasks down into steps. "Start out with one or two sentences, since by the time you get to sentence three, they're lost," Dr. Salamon says.

Ask yes-or-no questions. "'Would you like a cup of tea?' may work better than 'What would you like to drink?'" Lyman says. Or, instead of an open-ended question, present a simple choice — asking, for instance, if they'd like soup or a sandwich for lunch.

Don't interrupt or assume. It may be tempting to try to finish someone's sentences or assume what they mean when they're grasping for words. Fight the urge. "If they're not able to find a word, ask, 'Are you meaning to say this?' or 'Is this what you're talking about?' But give them time to try to work it out," Dr. Salamon says.

Write it down. Verbal communication isn't always the best choice. Lean on lists and schedules to help guide someone with dementia toward activities, especially those they might resist. "Even if they don't understand what you're saying, many people with dementia do have the ability to read, so sometimes it helps to make a very simple schedule," Dr. Salamon says. "Then you can point to it and say, 'Oh, it's time for pills, it's time for lunch.' And it might be helpful to say, 'Let's do this together' — words that support the person's dignity."

Use touch. Dementia can be a lonely experience, but loving attention and touch can connect you beyond words. "Holding hands can be extremely reassuring to them," Dr. Salamon says.

Self-care strategies

How well you communicate doesn't solely depend on the abilities of someone with dementia — it also depends on what kind of day you're having. It's okay to acknowledge when you're not at your best.

"It's a tightrope," Dr. Salamon says. "You can say, 'I'm having a tough day today; forgive me if I'm impatient or tired.'"

Being forgiving of yourself is imperative when communicating with a dementia patient seems like walking through land mines. "There are no cue cards for this," Lyman says. "But most caregivers learn on the fly what works and doesn't work."

As you navigate this tricky terrain, Harvard experts suggest these self-care strategies:

Briefly disengage when necessary. "If your frustration is building, that's when you tell the person, 'I'll be back in 15 minutes.' Turn on the radio or TV for them and walk away for a bit," Lyman says. "It's important to take a moment to decompress."

Seek support. Lyman often refers dementia caregivers to the Alzheimer's Association to join a support group. "When you're in it 24/7, it's very lonely," she says. "You think you're the only one dealing with this, and you're not. It's so helpful to meet with others who are struggling with the same things."

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