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Assessing dementia-related behaviors: can you read the clues?

Caring for a person with dementia requires you to wear a lot of hats, but none is more important than that of the detective. As the brain changes, so do a person’s method of communicating their needs. Words may not come as easily so their behavior often becomes their way of “talking” to us. As care partners, we are constantly picking up clues and interpreting that behavior. We’re anticipating their reactions, solving these dementia-related behaviors as they unfold. But as one case is closed, another always lurks around the corner. It is our ability to “think” like a person with dementia that determines how successful we’ll be as caregivers. Do you have what it takes? Let’s put your sleuthing skills to the test!

Scenario 1

Close of of elderly woman's feet as she grasps one in pain

Elderly woman putting cream on swollen feet before put on shoes

Margaret is typically able to move around the house without the aid of a walker. She loves exploring every room looking at the family pictures on the walls and spends a lot of time on her feet. But, when she gradually becomes more sedentary, her daughter Cathy starts to wonder. She notes that Margaret sits on the couch for long stretches of time and gets agitated when Cathy tries to encourage her to stand up to use the restroom, swatting her away. Cathy says when she finally gets her up, Margaret seems to favor her right foot and grimaces from time to time as they slowly walk down the hall together. She also notices that Margaret is constantly trying to take off her shoes. 

What is causing Margaret’s change in behavior?

The first clue we get from Margaret’s change is something is keeping her from standing up. Based on her grimaces and resistance to getting up, the culprit is likely something physical. Cathy’s first thought is that perhaps her shoes are too tight or uncomfortable, so she buys her a new pair of comfortable tennis shoes. This does not seem to help the situation at all, and Margaret continues to resist putting on shoes in the morning. Cathy finds the new tennis shoes discarded next to the couch most days.

Next, Cathy remembers that she seems to favor one foot, so that evening when she gets her Mom ready for bed, she makes sure to take a closer look at that foot for any injuries. Sure enough, she notices a painful ingrown toenail that has become infected and swollen. No wonder Margaret did not want to put on shoes, let alone walk with the discomfort she was experiencing. Cathy was able to get her to a podiatrist for treatment and in no time, Margaret was back to walking as usual. As a result, Cathy decided to make twice-monthly Mother/Daughter pedicure dates at the nail salon to make sure her Mom’s nails were kept neatly trimmed going forward to keep the ingrown nails from returning.

Foot health is incredibly important for seniors and can greatly impact mobility. A person with dementia may not recognize or easily communicate their foot pain or neuropathy, so regular visits with a podiatrist are a great way to help keep foot pain, injuries, and dementia-related behaviors at bay.

Scenario 2

Man sitting down trying to put on shoes

Steve recently began having problems dressing himself in the morning. He is able to put clothes on without physical assistance, but his wife Judy shares an example that he often puts them on in the wrong order, or the wrong way, attempting to put his underwear outside his pants or his shirt on backward. Sometimes he chooses items that aren’t appropriate for the situation, or clothes that don’t go together, where previously this wasn’t an issue. Like in the morning he put on a heavy winter jacket despite the sweltering July temperatures. Another time he put on his nicest suit to go work in the garden. In a well-meaning attempt to speed up this process, Judy has begun waking Steve up and picking out his clothes for him so that they can begin their day without wasting time undressing and redressing him. Now mornings have become a source of frustration for Steve– he lashes out at Judy and refuses to get dressed at all, rejecting every item of clothing she pulls out of the closet. He sits defiantly at end of the bed with his arms crossed and Judy gets so exhausted she allows him to stay in his pajamas for most of the day. 

What does Steve’s behavior tell us about his current situation?

Most importantly, Steve can still dress himself; there are no physical impediments to him completing this essential task. He does not require his wife’s assistance to button shirts, zip-up pants, or tie shoes. Helping maintain independence whenever possible should always be a caregiver’s top priority. Judy knows how important it is for Steve to pick his clothes because he has already given up so much of his daily care to her and he feels like this is one of the things he can still do himself. Imagine the sense of pride he feels in completing this task that so many of us take for granted. He feels as though he is a burden and this small thing means a great deal to him. Even though Judy means to be helpful, it only frustrates and upsets Steve when she takes over the task.

Secondly, Steve putting on his clothes in the wrong order or the wrong way could indicate that his disease has progressed, but, he may simply need some prompting to relearn the correct order. According to an article published by Harvard Medical School, it is possible for people with dementia to learn new things. This includes relearning a new way to do something they’ve always done but have forgotten how to do; they just need the task or activity broken down into smaller steps.

And finally, Steve sometimes misses the connection between the weather or occasion and the appropriate garment. Caregivers take note: if the clothing choice is appropriate but perhaps mismatched, let it go! It is not worth the argument, and as long as the garment does not create a safety issue, it is important to honor their choices.

Now that she knows where the obstacles lie ahead, how can Judy help Steve continue to get himself ready each morning without her feeling that she needs to intervene and upsetting him? Because she knows he can still physically do this activity, she first tries to orient him to the weather and plans for the day first thing in the morning. “Good morning, Steve! I hope you slept well. I was just watching the morning news and they said it’s going to be a little chilly today. Why don’t you pick out one of your favorite warm sweatshirts since I need your help out in the garden today?” Steve follows Judy’s cue and goes to pick out a sweatshirt, but he is suddenly overwhelmed by the variety of sweatshirt choices and is stuck in the moment. The next day Judy tries again, only this time she has removed all but two sweatshirts from his drawer. Faced with a simple choice, Steve picks up a sweatshirt and puts it on.

To keep him from putting on the clothes in the wrong order, she gently suggests pieces one at a time in the same, allowing Steve to make his own choices as they go. When this technique stops working a few weeks later, she simply began laying out his clothes the night before in the order she wanted him to put them on, which still allows him to do this activity relatively independently.

There are countless changes in dementia-related behaviors just like the examples above that you will encounter along the way; each contains clues as to what your loved one is feeling, and each will require you to think fast to come up with an appropriate response. Behaviors, after all, are simply feelings in action.

Here are a few more helpful tips from Cleveland Clinic Center for Geriatric Medicine Section Chief, Dr. Ardeshir Hashmi, who says behaviors like aggression, confusion, sleep problems, and wandering are common, but they can be managed. With patience and a little creative thinking, you can face the dementia journey with confidence and determination!

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