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The Unique Challenges of Dementia Caregiving

Tips on how to manage such often-difficult care

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Douglas Scharre, M.D., author of Long-Term Management of Dementia and director of the division of cognitive and memory disorders at the Ohio State University Wexner Medical Center, explains how to manage such often-difficult care.

With Alzheimer’s disease, a loved one can seem lucid one day and unrecognizable the next. Why?

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Alzheimer’s is a slow process in which toxic proteins build up in specific areas of the brain, starting with the area where you form new memories. So if you have conversation with someone in early stages, they may not remember the lunch they had with you yesterday, but they may be able to talk about a wonderful anniversary dinner from three years ago, because they’re accessing a stored memory in the part of the brain that’s not damaged.

The disease also causes you to lose brain cells, so you have less of a reserve when something throws you off, such as a bad night’s sleep or being under the weather. So they might seem OK, but if they didn’t sleep well, they can have much more trouble because they don’t have the reserves.

What causes symptoms not related to memory, like mood swings or confusion?

In about 75 percent of people with the disease, those toxic proteins spread to other parts of the brain, like those responsible for comprehension and language, which is why you have to communicate more simply as the disease progresses. It can affect the spatial area, which is why people get turned around and lost. The area that’s responsible for executive function like problem-solving and decision-making can be affected, which is why someone might pause and ponder, How do I figure out this microwave?

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In addition, it can affect the limbic lobe, or our emotional brain, so they may have mood issues like anxiety, depression, restlessness and sleep issues. One common behavior when this part of the brain is affected is delusions or false beliefs — they think something happened when it really didn’t.

What are some ways to be an effective caregiver in those circumstances?

You need to change your approach. Your loved one is not going to change even if you explain something 500 times. False beliefs get fixed. If your dad thinks he’s not in his house and needs to get home, trying to bring him back to reality by saying, “My gosh, Dad, don’t be silly. This is your house. You’ve lived here 40 years,” is only going to start a fight. Instead, empathize with them. You can say, “Thank you for telling me. It’s getting late, so why don’t we just hang out here? We’ll figure it out tomorrow.” That way, you are on their side, and they feel reassured.

Also, make them feel that you are doing things together rather than making them feel bossed around. They are constantly being told, “You better go to the bathroom. You better get dressed. You better eat now.” No one likes that. Instead, try, “I’m going to the bathroom now, but would you like to go first?” Then they don’t feel singled out.

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Finally, employ redirection. If it’s time to eat, but they’re in a mood or don’t want to come to the kitchen, do not insist they come to the table. Instead say, “Can you help me?” Most often they will say, “OK, what do you need?” Then you can say, “I need help in the kitchen.” And when they get there, you can say, “Let’s sit down and have dinner now.”

How should a caregiver deal with outbursts of anger? And how common is it for a person with dementia to lash out physically?​

Verbal anger is very common and physical anger can occur in 30 percent of dementia patients. If anger is becoming an issue, talk to your loved one’s doctor about the possible need for pharmacological treatments. Recognizing the signs of an emerging outburst and learning ways to de-escalate will also reduce these episodes.

How frequently does a caregiver of a person with dementia experience a sense of burnout? What should they do to recover?

Burnout is common. But to continue on effectively in their role, caregivers really do need to do what they can to avoid it. The best ways are by getting respite, getting assistance with problem behaviors and having a good support team, such as family, friends, support groups, providers or social workers.

How do you know when the caregiving job is too big for you to handle? When do you need to seek professional in-home or institutional care?

Every caregiver has different capabilities. Some need help for all tasks, and others can handle many of them. The caregivers know when they are burned out or incapable of helping with some tasks. When the caregiver can no longer handle the duties or they have the finances to get more assistance, they should request help. The home situation, the care needed and the financial resources available are critical to determine if they can accept professional in-home care or if they need institutional care.

Are there certain signs that people overlook? How do you take the emotion out of that decision?

One frequent situation we hear about is the caregiver that had “promised” their loved one to “never put them into a home.” That creates a lot of angst when the time comes and they have no choice. I point out that if the loved one is institutionalized, the caregiver can come to visit and spend even more time with them as they no longer have to worry about all the other duties. That often can help ease the decision and emotion on moving them to an institution for the care they need.

How to Care for Someone With Dementia

Selene Yeager is a health journalist who has also written for Details; Shape; O, the Oprah Magazine; Redbook; Men’s Health; Women’s Health; Marie Claire; Better Homes & Gardens; Cosmopolitan; and other media outlets.

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