Caring for Those With Dementia, and the Caregivers Too

Writer / Christy Heitger-Ewing
Photography Provided

Six years ago, Jennifer Coy-Rash was busy raising her two young children when she began noticing that her mother could no longer find her way to her house or to the local library. She observed other odd behavior, too, so she had her 64-year-old mom evaluated, and she was diagnosed with early-onset Alzheimer’s. A couple years later, Coy-Rash’s dad received the same diagnosis.

While Alzheimer’s disease is the most common type of dementia, accounting for 60 to 80% of cases, other types include dementia with Lewy bodies, frontotemporal, and vascular.

When we think of the word “dementia,” we tend to think of memory loss, but it’s actually much more than that. According to Jessie Hillock, owner and founder of The Memory Compass, dementia is a loss of executive function.

“We’re doing a disservice by thinking of dementia as memory loss,” says Hillock, a dementia care specialist. “A person may be able to name the day of the week and the president of the United States, but they can’t operate their cell phone or their microwave oven.”

It’s important to recognize the difference between normal aging and mild cognitive impairment. With normal aging, you may see changes in one’s ability to multitask, slowed thinking speed, occasionally struggling to find the right word, and sometimes forgetting names and appointments but remembering them later. Also with normal aging, the individual experiencing these issues is the only one who notices them. Mild cognitive impairment, however, is when others take notice. In this instance, an individual’s memory loss disrupts life. They experience confusion with time or place, they misplace things and are unable to retrace steps, and they may struggle with understanding visual images and spatial relationships, which can result in car accidents. Also, dementia patients lose their filter.

When communicating with someone with dementia, Hillock recommends joining the person in their reality, rather than trying to invite them into yours. For example, say your mother passed away five years ago and your father, who has dementia, asks you where his wife is. Rather than reminding him that she’s been deceased for years, it’s better to say, “I think she’s at the store right now,” or, “What would you like to tell her?”

Some people think taking their loved one to the gravesite will help them grasp reality, but that news just serves to confuse and overwhelm them.

Another common scenario with dementia patients is realizing that it’s best, for the well-being of all concerned, to take their car keys away. In this instance, what do you do if they keep asking for their keys? Rather than stating that it’s no longer safe for them to drive, it’s better to say, “I took your car to the shop,” or, “Your grandson needed to borrow your car.”

“This one is great because if they feel they are helping someone, that makes them feel useful,” says Hillock, who calls these little white lies “therapeutic fiblets.”

Karen Rogers (name changed to protect identity) says that providing her husband with a fake set of keys keeps him happy.

“Holding those keys makes him feel independent,” says Rogers.

One common complaint from families of dementia patients is their refusal to eat or drink. Asking them if they’re hungry or thirsty will likely be met with an upturned nose. If, however, you hand them a plate of food or a glass of water, they’ll often eat or drink it.

“Lead them to food and sit down with them,” says Hillock.

Helping dementia patients find purpose is key. Hillock knows of a lady who leaves the same basketful of laundry for her mother to fold over and over because her mom wants to feel like she’s helping. You may have heard of dementia patients who are given a baby doll or a stuffed animal to “care for.” While this works beautifully in some cases, Hillock points out that it can be anxiety-provoking for others if they are concerned that someone has abandoned their baby or their pet.

In 2021, 11 million Americans reported providing 16 billion hours of unpaid care for loved ones with dementia. Furthermore, the Central Indiana Council on Aging reports that one in six millennial caregivers who cares for someone living with dementia struggles with mental, physical and financial hardships because of their caregiving role. Therefore, it’s important that we acknowledge the importance of caring for the caregiver as well.

Jean Crane, a counselor at Care to Change, says this entails meeting physical, mental, emotional and social needs. This includes eating nutritious foods, engaging in proper exercise and getting adequate rest. It’s also crucial for a caregiver to cut out negative self-talk.

“Be less judgmental and more compassionate to yourself,” says Crane.

Also curtail your “what-if” thinking, which only stirs anxiety. It’s better to focus on today, in the given moment.

It’s also wise to practice self-gratitude. “It’s impossible to be anxious and grateful at the same time,” says Crane.

Emotionally, you should identify, express and process your feelings. In other words, if you’re stressed, breathe. If you’re angry, punch a pillow. If you’re disappointed, confide in a trusted friend. Also, tend to your soul needs.

“What brings you rejuvenation?” asks Crane. “What fills your tank? You can’t give if you have nothing left inside.”

A dementia diagnosis can be a scary thing, but keep in mind that there are resources available to help you.

Coy-Rash ended up connecting with a lot of great resources, many through the local senior center, which helped her navigate this new life with her parents. She now is well-versed in Medicaid waiver payments including eligibility criteria, finding providers, and the services that are covered.

“Connecting with the proper resources is so helpful,” says Coy-Rash.

The Muncie Delaware County Senior Citizens Center offers activities, programs and resources for seniors. Visit muncieseniorcenter.com to learn more.

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Tips for Helping Those With Dementia

• Be patient when their memory fails by letting them try again, and reminding them of what they were talking about.
• Make your conversations meaningful rather than just engaging in small talk. When you enter into “their world,” they may have a lot to say. Let them guide the conversation, rather than asking them, “Remember when?”
• Avoid letting them read thrillers or watch crime shows before bedtime, because they may wake up thinking they are part of the scene. Stick with lighthearted books and shows in the evenings.
• If they are struggling to find the correct word, ask them to point to an object or gesture in order to communicate.
• Avoid towering over them so they don’t feel intimidated. Bend down to meet them at eye level.
• Speak slowly and clearly, and wait patiently for a response, as it may take 20 or more seconds for them to process what you said.