Caring for someone with dementia isn’t easy — here’s how to build connection
By Grace Vitaglione
When LaShelia Patterson was in high school, her grandmother was diagnosed with dementia. Her mother and her mother’s siblings took turns caring for her, but Patterson said her mother soon burned out.
Like many caregivers, Patterson’s mother also worked full time and took care of her children. It became too much.
Patterson and some of her cousins got trained and certified as personal care aides so they could help care for their grandmother, she said.
LaShelia Patterson works as a professional caregiver for people with dementia and others, as well as with an adult day program. Credit: Grace Vitaglione
Her paternal grandfather was also later diagnosed with dementia and lived in a rest home. Patterson started working at the facility and took care of him along with other patients. She later became a certified nursing assistant and a medical technician.
“With that experience, I found out that it was pretty much my niche,” Patterson said. “I’ve been in health care since.”
Almost 20 years later, Patterson is 43 and living in Vance County. She works for the agency Affordable Family Care Services and with an adult day program in the Louisburg Senior Center. She also has seven kids of her own.
Professional caregivers like Patterson — and unpaid ones, who often take care of a family member — attended a conference on Aug. 6 in Henderson put on by the Dementia Alliance of North Carolina. The goal was to learn how to better connect with people who have dementia and how to prioritize taking care of themselves so they don’t burn out, like Patterson’s mother did.
People with dementia lose the ability to remember and reason, and that affects their daily life. Dementia isn’t a normal part of aging, but it is more common in older people. About a third of all people ages 85 or older may have some form of dementia, according to the National Institute on Aging. There are several forms; Alzheimer’s is the most common, according to the institute.
Over 210,000 people in North Carolina ages 65 and older had Alzheimer’s in 2020, according to the Alzheimer’s Association.
Driving a car, managing medications, or making a meal can become difficult for people with dementia, said Lisa Gwyther, associate professor emeritus in psychiatry and behavioral sciences at Duke University. She founded the Duke Dementia Family Support Program, which started the first support groups in N.C. for families of adults with memory disorders in 1980.
Upcoming caregiver conferences include:Lenoir Community Dementia Workshop – Aug. 14Boone Community Dementia Workshop – Aug. 15Workshops are free with RSVP.
Build connection
Ellen Harris, who lives in Person County, was one of the nonprofessional caregivers who attended the conference. She cares for her husband, who has had dementia for about a decade, she said. He needs help managing his medications and eating, as he’s lost interest in food. She said he’s also lost much of his short term memory.
Harris stressed the importance of patience when caring for someone with dementia.
“Just remember, he can’t help it. You’re the one that’s got to adjust,” she said.
That idea was also emphasized by the conference speaker, Melanie Bunn, a nurse and dementia training specialist with the Dementia Alliance of North Carolina.
Dementia Trainer Melanie Bunn, right, demonstrates with a conference attendee, left, how a caregiver can stand beside someone with dementia and hold hands. Credit: Grace Vitaglione
Bunn had attendees practice how to approach someone with dementia. First, they hold their hand up beside their head to draw the person’s attention to their face, then offer a handshake. Once holding hands, the caregiver can turn to stand beside the person.
People with dementia often have tunnel vision that draws their gaze down away from the face, so that helps redirect them, Bunn said.
It’s also important to build connection and trust with people who have dementia, she said. One way to do that is to “reflect” their emotions, such as laughing when they laugh. The caregiver should also remember to focus on the person, rather than treating the person like a problem to be solved, she said.
For example, when helping someone change their clothes, the caregiver should try to have the person help them with the action. That allows the person to feel as though they’re working with the caregiver rather than the caregiver doing something to them, she said.
Bunn also recommended using the “magic words” of apologizing — “I’m sorry, I know this is frustrating for you” — even when the caregiver doesn’t understand why the person is upset. It can also be useful to say “tell me more” when struggling to understand the person.
Communicate differently
Communication is often one of the biggest challenges for caregivers of people with dementia, as the person often no longer talks or behaves in the way they used to, Gwyther said.
Bunn recommended using body language instead of relying on talking or using force. Many people with dementia have difficulty understanding what someone is saying, even if they can hear it, she said.
People with dementia may also lose some of their vocabulary. As a result, it can be easier to remember music, rhymes and poetry, as well as curse words and racial slurs, she said.
The prefrontal cortex — the front part of the brain behind the forehead — is the part of the brain that holds “executive functions,” such as decision-making, knowledge of rules and impulse control. That’s diminished in people with dementia, Bunn said.
The hippocampus in the brain is responsible for memory, but it shrinks in people with dementia, she also said. That makes it harder for the person to remember new information.
People with dementia can’t change, so it’s up to the caregiver to adjust to the situation and solve it.
Gwyther said creating routines helps make life easier for many people with dementia. Some people benefit from signs, reminders, notes and calls as well.
Physical exercise, a healthy diet and keeping up with social relationships all help both to prevent dementia and mitigate its effects, she said. A common symptom is loss of initiative. People with dementia often enjoy music, arts and even routine household chores — they just need help getting started.
Bunn referred to the four stages of a task: initiation, doing the task, finishing it and transitioning to something else. Caregivers just need to help the person move along those steps.
Taking care of the caregiver
Harris said she knew from the start of being a caregiver that she needed to take care of herself in order to take care of her husband. He’s able to stay at home alone for periods of time during the day, so she’s able to go play pickleball or bridge.
She’s also attended a support group for caregivers for about a year. Harris said the members learn from each other, and it’s been very helpful.
Gwyther said many caregivers don’t see the toll it can take on them. The constant vigilance required causes chronic stress, which makes them vulnerable to illnesses. It’s a physical and mental toll.
“A lot of caregivers are dealing with what I call ambiguous loss,” she said. ”It’s the constant loss of capacity in somebody that they care about — right in front of them.”
That’s why it’s important for caregivers to find support and services, she said. Families may have a hard time trusting a service provider, and many people with dementia don’t believe they need help.
“People need to know that they can’t meet all the needs of someone with progressive dementia for nine years, day and night, without it having an effect on them,” she said.
The caregiver support system is “fragmented,” Gwyther explained. There’s a private industry in home care and nursing home care, as well as a “gray market” in which people informally hire neighbors or other community members to take care of someone.
Medicare doesn’t pay for many community-based long-term care services and supports. One recent study conducted by the National Partnership for Children and Families showed that family caregivers — mostly women — provide close to a trillion dollars a year in unpaid caregiving.
There’s a network of aging services in North Carolina, some through the state Division of Aging, Gwyther said. Project CARE also has several locations statewide and offers information and support to caregivers for people with dementia.
Patterson said the best part of caregiving is the stories. She recently worked with a 92-year-old woman living in a Raleigh facility who remembers how she met her husband and their travels together.
“Those stories are what they cherish the most, and for them to be willing to share them with you, that’s dope,” she said.
Tips for connecting with people with dementia
Communicate with visual cues as well as talking.
Cue a handshake to draw their attention to your face.
Use the phrase “Tell me more.”
Do something with them, not to them.
Reflect their emotions.
Help them to initiate a task, complete it and transition to something else.
Try including routines, music, arts, healthy diet, socialization and exercise.
Apologize and let go of the need to be right.
You have to be the one to adjust.
The post Caring for someone with dementia isn’t easy — here’s how to build connection appeared first on North Carolina Health News.
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