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Taking care of someone with dementia

Caregivers' questions and experts' answers

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November 23rd, 2015
dementia person with caregiver
dementia person with caregiver

Everyone copes with different challenges when taking care of someone with dementia, but some of the same problems are shared by many caregivers. For this article, several caregivers whose loved ones reside in a long-term care facility near Baltimore, Md., were interviewed. What follows are some of the most common concerns. Answers have been provided by experts who work with patients and families who are coping with dementia-related illness.

1. “When my husband was first diagnosed with Alzheimer’s disease,” says Ruth M., “I felt overwhelmed by the numerous things I needed to do to prepare for his care. I managed to get through it, but I wish at the time that I had known how to prioritize better.”

“There is no single way to prioritize tasks at the beginning of the illness because everyone’s needs are different,” says Beth A. Kallmyer, M.S.W., vice president of constituent services for the Alzheimer’s Association. “The first thing most people should do is give themselves time to deal with the emotional reaction to the diagnosis. If you don’t, it can interfere with your planning later on.”

Examples of people you may want to talk to about your feelings are your family, circle of friends, or clergy. If you’d rather talk to someone who can view your situation more objectively, call your local Alzheimer’s Association. “There are master’s level clinicians and social workers available 24 hours a day, 7 days a week,” Kallmyer says. “There is also a substantial amount of information on our website to help caregivers who are taking care of someone in the early stages of disease.”

“It’s a good idea to get plans in place as soon as possible. Although Alzheimer’s disease has a fairly predictable course, you do not know how quickly it might progress,” says Robert Stewart, M.D., medical director at Wind Crest, an Erickson Living community in Highlands Ranch, Colo.

2. Ronald J. says, “Before my wife came into the nursing home, I found the day-to-day tasks to be most frustrating, like helping her take a bath when she didn’t want to.”

“The best way to cope with necessary tasks that become difficult is to use common sense and ingenuity,” says Peter Rabins, M.D., director of the division of geriatric psychiatry and neuropsychiatry at the Johns Hopkins University School of Medicine and author of The 36-Hour Day (Johns Hopkins Press). “Instead of getting into a conflict over whether or not she needs a bath, tell her one step at a time how to prepare for it. Think about her lifelong habits when she got ready to bathe, and talk her through it.”

Sometimes incentives might work, such as offering a favorite snack once the bath is over. If all else fails, Rabin suggests giving a partial wash-up or a sponge bath. 

3. “While my mom was at home, I couldn’t convince my dad to get any help—especially with mom’s care,” says Laura K. “He insisted on doing everything himself, and I think that put unnecessary stress on my mom and our whole family.”

“Family members or friends can suggest specific help with errands and daily duties,” says Marina Bravo, L.C.S.W., clinical social work director at United HomeCare Services in Miami, Fla. “You might find that a little bit of assistance here and there can make a significant difference, and it can make everyone feel better.”

“It’s important to understand that some people are eager to help, but they may feel uncomfortable spending time with someone with dementia,” Rabins says. “Finding other ways for them to ease your load might be easier and beneficial for everybody.”

“It seems as if some caregivers refuse help because they are accustomed to being self-sufficient their whole lives,” Stewart says. “Sometimes family members may have no choice but to accept that.”

4. “Everyone advises me to join a support group. Although I wouldn’t mind talking with other caregivers, I am a very private person and do not enjoy those types of groups,” says Susan M.

Research shows that getting support early on can help you stay healthier as you care for someone with dementia. “You probably have many questions and concerns about what is going to happen or what is currently happening over the course of the disease,” Kallmyer says. “It’s enormously helpful to talk to others who are going through the same situation.”

“Alzheimer’s disease and other dementias are so complex and taxing that your usual coping mechanisms may not be sufficient,” Rabins says. “Some form of support is necessary for practically all caregivers.”

Support, however, doesn’t always have to be a weekly, sit-down group. It can come in many forms. Today’s technology makes it easier to connect with practically an infinite number of caregivers. “The Alzheimer’s Association offers an online support community with message boards and specific forums for people affected by this disease,” Kallmyer says. “People living in remote areas can especially make use of online help.”

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