How to better connect and communicate with people with dementia

By Grace Vitaglione

When LaShelia Patterson was in high school, her grandmother was diagnosed with dementia. Her mother and her siblings took turns caring for her, but Patterson said her mother soon burned out.

Like many caregivers, Patterson’s mother worked full time and cared for her children. It became too much.

Patterson and some of her cousins ​​trained and became certified as personal care assistants so they could help care for their grandmother, she said.

Her paternal grandfather was later diagnosed with dementia and lived in a nursing home. Patterson began working at the facility, caring for him and other patients. She later became a licensed nursing assistant and medical technician.

“Through that experience, I discovered that this was exactly my niche,” Patterson said. “I’ve been in healthcare ever since.”

Nearly 20 years later, Patterson is 43 and lives in Vance County. She works for Affordable Family Care Services and at an adult day program at the Louisburg Senior Center. She has seven children of her own.

Professional caregivers like Patterson — and unpaid ones who are often caring for a family member — attended a conference in Henderson on Aug. 6, hosted by the Dementia Alliance of North Carolina. The goal was to learn how to better manage those with dementia and how to prioritize themselves so they don’t burn out like Patterson’s mother did.

People with dementia lose the ability to remember and think logically, and this affects their daily lives. Dementia is not a normal part of aging, but it is more common in older people. According to the National Institute on Aging, about one-third of all people age 85 and older have some form of dementia. There are several types; Alzheimer’s is the most common, according to the institute.

According to the Alzheimer’s Association, more than 210,000 people ages 65 and older in North Carolina had Alzheimer’s disease in 2020.

Driving, taking medication or preparing meals can be difficult for people with dementia, says Lisa Gwyther, professor emeritus of psychiatry and behavioral sciences at Duke University. She founded the Duke Dementia Family Support Program, which established the first support groups for families of adults with memory problems in North Carolina in 1980.

Establish connection

Ellen Harris, who lives in Person County, was one of the non-professional caregivers who attended the conference. She cares for her husband, who has had dementia for about a decade, she said. He needs help taking his medications and eating because he has lost interest in food. She said he has also lost much of his short-term memory.

Harris stressed the importance of patience when caring for people with dementia.

“Remember, it’s not his fault. You’re the one who has to adjust,” she said.

This idea was also emphasized by conference speaker Melanie Bunn, a nurse and dementia education specialist with the Dementia Alliance of North Carolina.

Bunn had participants practice how to approach a person with dementia. First, they hold their hand next to their head to draw the person’s attention to their face, then offer a handshake. Once they’re holding hands, the caregiver can turn around and stand next to the person.

People with dementia often suffer from tunnel vision, which draws their gaze away from their face and down, helping them refocus their gaze, Bunn said.

It’s also important to build a connection and trust with people with dementia, she said. One way to do that is to “reflect” their emotions, for example by laughing when they laugh. The caregiver should also remember to focus on the person rather than treating them like a problem to be solved, she said.

For example, when helping someone change clothes, the caregiver should try to assist the person in doing so. This will make the person feel like they are working with the caregiver rather than the caregiver doing something for them, she said.

Bunn also recommends using the “magic words” of apology – “I’m sorry, I know this is frustrating for you” – even if the caregiver doesn’t understand why the person is upset. It can also be helpful to say “tell me more” if you’re having trouble understanding the person.

Communicate differently

For caregivers of people with dementia, communication is often one of the biggest challenges because the person often doesn’t talk or behave the way they used to, Gwyther said.

Bunn recommends using body language rather than relying on talking or force. Many people with dementia have difficulty understanding what someone is saying, even when they can hear it, she said.

People with dementia may also lose some of their vocabulary. As a result, they may find it easier to remember music, rhymes and poems, as well as swear words and racial slurs, she said.

The prefrontal cortex – the front part of the brain behind the forehead – is the part of the brain responsible for “executive functions” such as decision-making, rule knowledge and impulse control. In people with dementia, this area is impaired, Bunn said.

The hippocampus in the brain is responsible for memory, but in people with dementia it shrinks, she said, making it harder for the person to remember new information.

People with dementia cannot change, so it is up to caregivers to adapt to the situation and find a solution.

Gwyther says creating routines makes life easier for many people with dementia. Some people also find signs, reminders, notes and phone calls helpful.

Physical activity, a healthy diet and maintaining social connections help prevent dementia and mitigate its effects, she said. A common symptom is loss of initiative. People with dementia often enjoy music, art and even routine household chores – they just need help getting started.

Bunn pointed out that there are four stages of a task: starting, completing the task, finishing it, and moving on to something else. Caregivers just need to help the person go through these steps.

Care of the carer

Harris said she knew from the beginning that she would have to take care of herself in order to care for her husband. He can stay home alone for periods of the day so she can play pickleball or bridge.

She has also been attending a support group for caregivers for about a year. Harris said the members learn from each other and that is very helpful.

According to Gwyther, many caregivers don’t realize the strain this can put on them. The constant alertness required causes chronic stress that makes them vulnerable to illness. It’s a physical and mental strain.

“Many caregivers struggle with what I call ambiguous loss,” she said. “It’s the constant loss of the abilities of someone they care about – right before their eyes.”

That’s why it’s important for caregivers to find support and services, she said. Families often find it difficult to trust a service provider, and many people with dementia believe they don’t need help.

“People need to know that they cannot spend nine years caring for all the needs of a person with progressive dementia, day and night, without it having an impact on themselves,” she said.

The caregiver system is “fragmented,” Gwyther explained. There is a private industry for home care and nursing homes, but also a “gray market” where people informally hire neighbors or other community members to care for someone.

Medicare does not cover many community-based long-term care services and supports. A recent study by the National Partnership for Children and Families found that family caregivers, mostly women, spend nearly $1 trillion annually on unpaid care.

North Carolina has a network of services for the elderly, some through the state’s Department of Aging Services, Gwyther said. Project CARE also has several locations across the state and provides information and support for caregivers of people with dementia.

Patterson said the best part about nursing is the stories. She recently worked with a 92-year-old woman who lives in a nursing facility in Raleigh and recalled how she met her husband and their travels together.

“These stories are what matter most to them and the fact that they are willing to share them with you is great,” she said.

Tips for contact with people with dementia

• Communicate with both visual cues and speaking.
• Give a handshake signal to draw attention to your face.
• Use the phrase “Tell me more.”
• Do something with they, not To them.
• Reflect their emotions.
• Help them start a task, complete it, and move on to something else.
• Try to incorporate routines, music, art, healthy eating, socializing and exercise into your life.
• Apologize and let go of the need to be right.
• You have to be the one who adapts.