While more than 150,000 Utahns serve as caregivers for loved ones with dementia, often many people feel they are going at it alone. However, support resources for caregivers are available. And so is hope.
“With my family we have always used humor to kind of cope and deal with unpleasant situations,” said Lorie Staples. “So we joke a lot, try to keep the humor in it because if you don't laugh you are going to go crazy. So that's what we do—we joke a lot. We find that the more we talk about it with people and being open and sharing our experiences then we just grow our support network. So I am all about bringing awareness. Let's talk about this. Let's get it out onto the table.”
About 50,000 Utahns are living with Alzheimer's disease or some other form of dementia. Lorie Staples' mom is one of them.
“I just hate, for the person living with the disease, all the things that it robs them of,” Staples said. “They lose their identity. It's so hard to watch somebody with the disease because, in their mind, they don't understand, I guess, what's going on. But it's just so hard to watch people when they have a perfectly capable physical body, but their mind just isn't there. It's pretty cruel.”
Staples' mom was diagnosed with Alzheimer's in 2014 and is in a holding pattern with her disease. But that doesn't make the situation easier for Staples or her sister, their mother's primary caregiver. Their reality is stark. Staples' mom is never going to get better—just progressively worse. Perhaps that's why finding humor in the everyday situations makes caregiving a little easier to manage.
“My mom, she repeats the same question over and over and over,” Staples said. “To a lot of people that can be kind of frustrating and they might get tired of answering the same question over and over and over. But I just try to patient with her because she is not doing it to be funny—she is doing it because she really doesn't know. She doesn't remember that she just asked me if I have any travel plans. She just remembers that I travel. And so I'm grateful that she remembers that. I take each question with a smile and just answer it and try to be calm with her.”
For Elizabeth Fauth, an associate professor of human development and family studies at Utah State, that's an important task to take for caregivers. In Utah, about 80 percent of people caring for a person with dementia are family members. The role can be physically demanding, financially stressful, and emotionally taxing. And she says that although the work is difficult, it's still possible to have meaningful interactions with a loved one.
“Have people try to laugh and find joy and engage somebody,” she said. “It's not the end of the road and the person can still find these meaningful moments in their life, which also gives meaningful moments to the caregivers. To see that person engaged in something, to have a laugh, kind of reminds us of the humanity. It reminds us of the person who is still there—even if things have shifted. Being a caregiver is hard work and I don't want people to feel guilty that it's not all roses all the time,” she said. “You don't have to have engaging activities 24 hours a day either, that's not the solution. I think the solution is to try to enjoy the moments that you can as often as possible, try to create moments where those things can happen.”
Engaging persons with dementia in conversations or activities, even if they don't always make sense, is worth the effort, Fauth says. She recently wrapped up a study observing persons with advanced dementia in assisted care settings and found that most of the time, people responded positively to staff members when they made efforts to interact.
“To me, I think at this stage of the disease it doesn't mean that the person doesn't want to have interactions or doesn't want to engage in something, it's that they are having difficulty taking the initiative to do it themselves,” Fauth said. “They can't stand up, walk across the room, and say 'hi, my name is Beth. I'd like to go out for a walk today.' They just can't do that. And so it's up to the staff to recognize that the person needs an activity or wants to have an interaction, or just could benefit from that. So when staff take the initiative to do that, they almost always got a positive response back from the person.”
There is not paid overtime for caregivers. And although there are support services available through the state's caregiver support program and organizations like the Utah chapter of the Alzheimer's Association, many people feel they are going it alone.
Lynn Meinor, the Utah Department of Health's Alzheimer's State Plan Specialist, says that learning more about the disease can affect the quality of caregivers provide. By understanding the change coming, it can people plan and to cope. That's why the health department recently introduced Dementia Dialogues, a class for caregivers, in communities across the state.
“It's very helpful also I think explaining at the very beginning of class, about the different types of dementia, just dependent on the type of dementia that you have, it will how their brain deteriorates and how they are acting and behaving,” Meinor said.
Throughout the course, caregivers learn communication strategies and techniques for managing difficult behaviors that may arise as the disease progresses, as well as methods for creating a safe and calming environment.
“All communication as far as in the early stage of the disease, the middle stage of the disease, and then the late stage of the disease because all of the stages are very different and how you speak to someone in the early stage of the disease is very different than how you would speak to them in the later stages,” she said.
But if Meinor has one tip for caregivers, and she was one herself—for eight years--caring for her dad who had vascular dementia—it's this: “Take time for yourself, to seek support from either family members or your neighbors or your clergy, to assist you as you help your loved one progressing with dementia,” she said. “The Alzheimer's Association also has a 24/7 helpline, and I called them many times, just to seek some assistance and some counseling. So getting help for yourself, getting support, and taking care of your health.”
That's precisely why events like the upcoming Walk to End Alzheimer's are important for creating a supportive environment for caregivers to swap stories and reflect.
“This will be my fifth year participating in the walk,” Staples said. “I love doing it because this is a way I feel I can support my mom. I get a team together and we raise money for the Alzheimer's Association. To me, it's a great support network because when I reach out to my friends and family it's interesting because they also have stories of loved ones that have suffered from dementia. It's a really good day to remember why you are out there, why you are walking. You may feel like you are alone, but when you come to this walk you know you are not alone.”
Visit Lorie Staples' fundraising page for the Walk to End Alzheimer's, which supports Alzheimer's research and care. A silent auction will be held during walk on Sept. 22 from 9am to 12pm at Merlin Olsen Park in Logan.
Beth Fauth, an associate professor of human development and family studies at Utah State, has an ongoing study examining the effects of ACT for Caregivers, an online intervention for caregivers of loved ones with dementia.
Music appearing in this story: Bloom by Jahzzar.
Support for Diagnosed has been provided in part by our members and Intermountain Budge Clinic, a multi-specialty clinic offering care for every member of your family in one location. Details found here.