By Thomas Goldsmith
Solid communication can be tough with people challenged by the speech and comprehension problems that come with Alzheimer’s, dementia, stroke and aphasia.
With the addition of COVID-19 to the mix, North Carolina speech therapists, along with some patients and caregivers, are offering grounding in this new health care landscape, along with practical ideas on smoothing the path.
“Ninety-two percent of people with aphasia would consider themselves socially isolated, but if you put social distancing on top of that, we’re really concerned, especially about those living alone or not having a big community to support them or help them,“ said speech therapist Maura Silverman of the Triangle Aphasia Project. She founded her nonprofit on techniques that involved regular close-up work with clients.
“After we got in contact with them and did a wellness check, then we said, ‘What things could you be involved in? What would you like to do?’”
The virus that has spread through this Tar Heel spring has infected more than 15,000 people in the state and killed 577 as of Tuesday. About 60 percent of the deaths have come in one of the state’s 428 skilled nursing facilities, where 38,000 of North Carolina’s most vulnerable residents go to receive high-level care and lodging.
‘Without people being together’
Educator and therapist Melanie Bunn, who makes instructional videos as part of her role at the Dementia Alliance of North Carolina, said that the nursing home environment is a breeding ground for the virus with its close quarters, congregate meals and gathering places, and the simple need to maintain friendships among staff and residents.
“It’s more like a home environment where people are eating together at tables, they’re working on activities together and so it’s not really a medical environment,” Bunn, a nurse educator and consultant, said in a phone interview. “The whole idea is that it’s part of the benefit of the environment to have a sense of community and to reduce the isolation. It’s hard to reduce isolation without people being together.“
Jamila Minga, an assistant professor with the North Carolina Central University communication disorders program, works most often with people who have had strokes, with a special expertise in right-brain strokes.
“You want to think of language comprehension and language production (with right hemisphere stroke) — so it’s the way that we use language within a particular context and appropriately using language,” she said. “With the left hemisphere stroke, you may have some survivors that can’t get the word out, or who have difficulty understanding some language that is presented to them.”
In a follow-up email, she added, “Because there is no overt change in communication and physical consequences may be minimal, adults with right hemisphere disorder don’t look like they’ve had a stroke. The cognitive-communication changes have significant functional consequences.”
Talking home life
North Carolina Health News sought insight from two older couples who are dealing with one spouse’s dementia, John and Judy Abernethy of Apex, and Jackie and Bob of Wake County. The caregivers related experiences from daily life on communicating with their spouses as their lives inevitably change.
“We do use music a lot,“ said John Abernethy, 77. “I used my tablet and pulled up a song by Jamie Grace, A Beautiful Day. It’s an uplifting positive song and we play it every day, pretty much. We can sing along and she’ll sing the words.“
He doesn’t sugarcoat their situation. Wife Judy, 75, continues to decline because of a stroke she had 11 years ago.
“You can engage her, but you have to come to the conversation,“ he said.
Jackie and Bob, who asked that NC Health News not use their full names, have been dealing with Bob’s dementia for a year. At 81 he remains positive about his situation, perhaps more so than Jackie.
“I think he calms me down because he’s a very calm person and I’m a little on the nervous side,“ she said.
The COVID-19 lockdown has meant the couple no longer gets to take part in a favorite group, a men’s coffee group that also drew spouses to its gatherings.
“The girls would separate themselves,“ Jackie said. “We went into the kitchen and would just talk about the guys, which was therapy, in my way of thinking. I learned a lot, and because everybody’s going through a different stage and has different therapies of their own, or things they can add. With Bob’s group, we just had a lot of laughter and singing and I thought that was wonderful.”
Bob spent years in construction and design, including building continuing care communities.
In his early stage of the disease, he’s determined not to let it get him down, even though COVID-19 has disrupted some of their activities.
“We usually spend this much time together, so that has not been a big change; it’s just that we can’t get out and be as active as we’d like to be,“ he said. “We enjoy going to dinners and theater and meeting with friends. The one thing we do a lot of is still walk, walk everywhere. We miss our gym or yoga or Silver Sneakers and all that, but we basically spend those days together.”
Practical tips on helping people having communication problems or dementia navigate COVID:
Our experts offered experiences and guidance on communication, on protecting people with dementia, even on dealing with the bureaucracy that can confuse and confound older people and their caregivers. Therapist Melanie Bunn, Maura Silverman and Jamila Minga advised everyone to:
Visit creatively — Bunn
“I would have Grandma open her own door. I would go straight to Grandma’s bathroom and wash my hands. And then I would try not to touch a lot of things while I’m in the home and the things that I do touch I would wipe down before I leave.
“It’s hard because this is somebody you love, someone you want to be with. I would try not to be really very close; I would try not to hold hands and to hug but to sit farther away facing parallel to the person or perpendicular to the person, instead of face to face. Have some things in mind that you can share that might be memories that you talked about, or might be something where I have a photograph that I look at and grandma has a photograph that she looks at.”
Keep on pushing — Silverman
“(At the Triangle Aphasia Project) we are sending out what we call a daily language stimulation program, which is just a little task they can do. We’re sending them out on Sunday and it’s a whole week-long calendar of activities to do every day so today you’re going to work on writing, writing thank-you notes. Tomorrow is Tuesday, you’re going to work on reading and on Wednesday, watch a TED talk, and then have a conversation about it. It’s something that keeps the language, reading, writing, listening and speaking going today.“
Say it again — Minga
“There may be a need to actually repeat information over and over again and repeat it in a very simple way, and in a clear format. With respect to … expressing ways to reduce the risk of infections to individuals with cognitive impairment who are not able to attend, or who have poor memory, then you do have to repeat information.
“You may even consider writing it down and placing it in various locations around the house so that the individual who still has reading capabilities can actually read the information, and that can be a reminder of what actions need to be taken.“
Walk it and talk it — Silverman
“When we survey people, we’re saying, ‘So what can you do today to get yourself some exercise?’ Or can they get out and take a walk? Can they get healthy food? Can they communicate their needs in the grocery setting?”
Play a trick if necessary — Bunn
“I had a family member who was at the hospital and had had surgery so I put up a flower arrangement in front of the sink. And every time anybody would walk into the room, I would stand up and I said, ‘Oh let me move the flowers so you can wash your hands’ — a very polite way of saying, ‘Have you washed your nasty hands before touching the person I love?’ Without having to say to the surgeon or, you know, to the nurses, or to anybody, ‘I don’t think you’re gonna wash your hands.’”
Make sure there’s follow-up — Silverman
“A lot of times in the hospital, they want to get people out and back home where it’s safe. So they’re sending people home. And then that person falls through the cracks. Who’s supposed to be following the person? So if they’re not getting that kind of ongoing continuum of care or a speech pathologist along their path and they can’t tell us, ‘Hey we have a patient that you should see,’ then we’re really worried about those people becoming socially isolated and, and we’d almost never learn who they are.”
Listen, people — Minga
“At no point in time, even though a person has a memory impairment and may also have some common language impairments, do we want to not attend to someone’s communication. We want to be respectful and reciprocal with communication despite the fact that there are cognitive impairments. And so, caregivers should listen to people with dementia.
“If for example, they indicated they had symptoms of COVID-19 like difficulty breathing or feeling cold, that can actually help in the situation.”
Make a connection — Silverman
“The person with an impairment gets really, or in some cases at least, gets really excited when the caregiver makes it clear that the caregiver wants to know what the person is thinking, what are his or her desires.”
Show R-E-S-P-E-C-T — Minga
“There’s always an emphasis for me to treat people with communicative respect and dignity, despite the fact that they have communication and cognitive-communication impairments.”
Beware irritation — Bunn
”One of the things that happens to people living with dementia, is that actually the first symptoms that they show may be not physical, but might be more emotional, or more behavioral. So they might be really irritated and frustrated. They might be more confused than usual, they might have a change in function, when they’re trying to fight off an infection or they’ve been infected. It’s a systemic or full-body kind of response: ‘I feel worn out. I don’t have any energy.’ You’re looking for a change, anything that’s different for the person.”
Don’t help too much — Silverman
”If someone has trouble doing their bills, it doesn’t mean I’m going to do all your bills for you, it means you’re going to help and you’re going to assist them. I’m going to make sure they don’t write out a check for $7 million.
“At the same time you have to only provide the help that the person actually needs, and not more because otherwise the brain’s not being stimulated. You’re not going to feed someone if they have some ability to feed themselves, but maybe they need a visual for it, or maybe they need a cue.”
This story has been updated to correct the Dementia Alliance of North Carolina’s name