How to improve communication with a family member who has dementia
Robin Holmquist says she misses her father even as he stands right before her eyes. Only in his 50s, Peter Andrews, suffers from frontotemporal dementia, or FTD, a progressive brain disease similar to Alzheimer’s, which also has no known cure. “It’s so hard to find him and it’s only a brief moment that we have a connection with him,” says Holmquist, of Temecula, California.
Holmquist, her siblings and her mother, Renee, make the most of fleeting opportunities to connect with him. “We get to capture the little bit of Dad we have left in those moments,” she says.
A decline in mental abilities severe enough to disrupt daily life, dementia generally describes a group of symptoms caused by conditions or diseases such as Alzheimer’s, and includes memory loss and difficulty communicating. The latter, experts say, can further tax relationships, and make it harder to connect — whether to share sentiments from a lifetime together or to convey the need to take medication. Though dementia disproportionately affects older adults, FTD often afflicts individuals at a younger age than Alzheimer’s.
“People [with dementia] have difficulty understanding what someone else is saying, but then they can also have difficulty expressing themselves,” says researcher Marie Y. Savundranayagam, who helped The Gerontological Society of America develop evidence-based strategies for communicating with older adults who have dementia.
Speaking of dementia, try these communication strategies
Strategies widely advised by organizations like the Alzheimer’s Association and the GSA range from simple repetition and maintaining a positive tone to more technical advice.
For example, Savundranayagam recommends using right-branching sentences. Say this: “Take your seat and we won’t miss the movie” — connecting two ideas with “and” (or a main clause followed by a subordinate clause for English buffs); instead of this: “If you don’t want to miss the movie, you should take your seat,” which starts with an embedded clause that interrupts the main clause.
Savundranayagam explains that dementia impairs working memory. That’s used in conversation to temporarily store one’s thought — “if you don’t want to miss the movie” — and process new information at the same time, such as “you should take your seat.” For the sake of comprehension, she says it’s much better to speak sequentially as those prove easier for a person with dementia to process.
Savundranayagam also cautions against speaking too slowly, a common tactic to improve communication, which taxes that same working memory. That’s not to say you should zip through conversations.
“Be patient and take your time,” says Ruth Drew, director of family and information services at the Alzheimer’s Association, speaking plainly but not in an artificially slow way. “It’s not speaking with great pauses between each word so it’s hard to string the meaning together.”
Connect with a feeling when words fail
Drew emphasizes the importance of proper non-verbal communication, too, from open body language — facing a person and making good eye contact, with arms open, not crossed — to extending a hand in greeting or to provide assistance. Experts say it’s important to exude warmth, and to remain calm and redirect if things get awkward or tense.
Aim to connect with a feeling when you can’t understand what a person is saying, Drew adds. “You’re talking about someone who has a damaged brain and they cannot understand the world the way you do,” she says. “So it’s important for us to make those moments as pleasant as possible.”
With dementia, mental confusion can lead to disorientation that makes it hard for a person to remain tethered to time and place and increase their frustration and agitation over misunderstandings. “Talking in an even tone would be important because raising your voice or acting agitated would escalate the situation,” says Jeff Whitehouse, owner highly rated Homewatch CareGivers Atlanta East, which provides special training to home care staff for assisting people with dementia. He and others add that it’s better to diffuse the situation than win an argument and leave a loved one with a lasting negative feeling they remember long after they forget the words spoken.
“It’s important to live in the moments that you have, while you can communicate with a loved one,” Whitehouse says. “As time progresses and health worsens, it may not be possible, or as possible. Take advantage of the time you have.”
Spell out affection
For Holmquist, that means communicating “love” in big, bold letters that don’t always take the form of words. She once enjoyed rich conversations with her father and solicited his advice on everything from work to life in general. Now, she says, they have simple exchanges — she asks how he’s doing, and he usually gives a one-word answer, though once in awhile the man Holmquist remembers as very spiritual, a deep-thinker and a dreamer will pipe up. “We went to Big Bear [Lake in San Bernardino National Forest] ... and he said, ‘It’s beautiful out here,’” she says. “He still knows what’s going on.”
Holmquist treasures making him laugh and smile, and says he relishes affection, responding well to shoulder massages and when she or her siblings rub the temples of his head. “He does love a good hug, and interestingly enough, he used to not be a hugger,” she says.
Holmquist, 31, still longs for the forgone day she might have had a long chat with her Dad over a beer, and expresses frustration at having those exchanges stunted so early in their adult discourse.
Holmquist says she’s implemented verbal and non-verbal strategies to improve communication, such as positive affirmation, a warm touch, and going back to past points of connection, as advised by the Alzheimer’s Association.
Through the organization, Holmquist’s mother joined a support group and works with a care consultant, who helps her connect with resources, such as a adult day care that supplement her efforts as a caregiver. And Holmquist says continuing to share meaningful experiences that bridge past and present — such as going for hikes, which they’ve done together since she was a kid — helps them to reconnect. “I take it day by day, that’s the only way you can deal with this,” she says.