In a previous blog, I described general ways to prevent care refusals. In this blog, I go a little deeper and explain how to use 10 specific strategies to derail care refusals in real time.
Some of you may be wondering where these strategies came from. Short answer: my entire 40-year career in health care and the work of other researchers. But specifically, here is more of the back story. While completing my randomized clinical trial on ways to prevent care-refusals during mouth care, I began my faculty practice in a memory clinic. I would adapt these research strategies on the fly while teaching family caregivers how to handle refusals around bathing, medication, dressing, and other activities. I was also part of a 3-year study funded by the Department of Defense, where I provided weekly coaching to family caregivers of persons with either dementia or TBIs. Between my work in this study and my clinical practice, I became highly proficient at coming up with strategies and scripts that worked for family caregivers dealing with care-refusals.
Let’s say you are in the middle of bathing your mom and she starts trying to leave the tub. Or, you cannot even get your father into the shower. There is some overlap between this blog and an earlier one because some techniques are handy for both preventing care refusals and managing care refusals in the moment. It is important to pay attention to what was going on RIGHT before the behavior happened, because the timing may provide clues for WHY your family member started to resist or refuse the care.
1. Entering Their Reality (or traveling to Dementia Land)
Entering their reality is a good way to prevent care refusals, but it can also be used to handle care refusals. When you enter their reality, you approach the situation in a way that makes sense to the person living with dementia. In other words, your actions are aligned with their past memories and experiences. For example, one woman would agree to being showered but became hysterical when her daughter tried to wash her hair. The daughter tried washing her mother’s hair last, but her mother still attempted to leave the shower as soon as her daughter wet the hair. After the daughter and I spoke, we both realized that her mother only had her hair washed and styled weekly at the salon—or the beauty parlor, which is a term that pre-dated salons. The daughter, in fact, began recalling humorous situations where her mother took great lengths to prevent her hair from getting wet in-between hair styling appointments. The daughter decided to give mom a shower but used a shower cap. Mom stopped fighting the showers.
Distraction is another useful technique. One can try singing familiar songs or asking the family member to talk about a favorite memory. We have found that singing is a very powerful distraction, but it works best if you know your family member’s musical preferences or their favorite songs. While teaching at Penn State, I was working with a nursing home resident who absolutely refused to brush her teeth unless we sang, “I’ve been working on the railroad.” During one mouth care episode, I paused because I was afraid the woman would choke on the toothpaste. As soon as I stopped singing, the woman turned to me and smacked me with her toothbrush! I immediately resumed singing and she returned to brushing her teeth.
Bridging is similar to priming, which I described in another blog. Priming involves the use of the environment to help the person living with dementia understand why you are helping them. When I was a nursing assistant, I was taught to get the person out of bed, sit them on the toilet, and then wash and dress them while they were sitting on the commode. Guess what? When I tried to have people brush their teeth while sitting on the commode, they refused. Do you brush your teeth sitting on the toilet? No, you stand in front of the sink. When I use priming to complete mouth care, I stand the person in front of the sink, turn on the water, and place the toothbrush in their hand. You are trying to use familiar objects to access the memories around the activity you are trying to do. Bridging involves using an object related to the care activity at hand. If you are experiencing care refusals while trying to dress your loved one, ask them to hold an article of clothing. I have some video clips that are on YouTube. In this video clip, we used a toothbrush as a bridging object.
Sometimes, you can help reduce care-resistant behavior by using a hand-over-hand technique. There are a couple of ways to do this. The first is to place your hands over that of the person with dementia, and guide their hands with yours. I use this strategy with bathing. Another way is to place their hands over yours, and continue with the care. I have successfully used this strategy when removing dentures. I’ve even had the person living with dementia grasp my wrists as I’ve provided care. The wrist-holding strategy worked extremely well when I had a gentleman absolutely refuse any attempts to direct him into the examination room. I held out my hands and he grasped my wrists in an attempt to move me aside. I started walking backwards and he followed me. He started pushing against me, as if to push me out of his way. I used his momentum to walk backwards into the examination room and to guide him to a chair. If you do this, make sure you have a clear path and you don’t trip over anything.
Mirror-mirror involves providing the care while allowing the person living with dementia to see themselves in the mirror.
Mirror-mirror is a strategy I discovered in my own research. It works best with mouth care, but it can also work well for dressing. Helping the person in front of a mirror is similar to using the environment to support memories of self-care. Sometimes, though, performing mouth care serves as a type of distraction…especially if the person with dementia does not recognize him or herself in the mirror. If the person with dementia becomes upset and thinks the mirror images are strangers watching him or her, do not use this technique. Yes, people can fail to recognize their current selves in the mirror because they are moving backwards in time.
6. Caregiver Vibes
Sometimes, persons with dementia may refuse care because they are feeling rushed or may have forgotten, halfway through the activity, that they were in the middle of toileting, bathing, or getting dressed. It is normal for a caregiver to start to feel angry, frustrated, or anxious when the care refusals start. When you start to encounter refusals, first check your own feelings. Are you starting to feel anxious or rushed? Upset? If so, take a deep breath and tell yourself, “I’m doing fine.” Because, you really are.
7. Ask for Help
Next, try asking for help, using short, 1-step requests. For example, saying “Can you help me with this shirt?” while gesturing that you want your father to put his arm in the sleeve. The asking for help technique works really well when the caregiver is an adult child or grandchild.
8. Apologize with Praise
If the person seems to be getting upset, apologize. An apology with praise can also short-circuit care-resistant behavior: “I am sorry, I don’t feel like I’m doing this right. You are so patient with me.” Think about it. How many times in a day does someone apologize to you AND give you a compliment? Probably not much.
I see a lot of situations where family caregivers, without realizing it, begin to treat their loved one like a person-with-dementia, instead of a person LIVING WITH dementia. Mere semantics? Nope. Words are powerful. When I treat my family member like a person with dementia, I may focus on the dementia and not their personhood or humanity. My loved one is a unique individual whose behavior is affected by a neurocognitive disorder. They are NOT the disorder!
Where am I going with this? I believe that praise and compliments are social lubricants. Praise and compliments make everyone feel good and can reduce friction in relationships. If you are struggling with caring for a person living with dementia, try giving some praise or a compliment with every interaction. CAVEAT: Be sincere! Use adult praise! Otherwise, you may drift into elderspeak and create more resistant behavior!!
If none of these seem to be helping, you may want to bring up some positive type of reward. “Once we are finished, we are going to have some ice cream.” Or, “after this, we can see the grandkids.” Often, the pleasurable reward becomes its own form of distraction.
As an absolute last resort, and if you have another family member nearby, you can use the “rescue” approach. If the care refusals are escalating, and this is something that absolutely needs to happen (like changing soiled underwear), have the other family member step in and tell you to leave. They don’t need to be forceful or anything, they just simply need to say, “Please leave, I’ll take care of this.” Then, have the new person remove the soiled clothes. Rescue needs to be used carefully—you want person #2 to be someone liked by the person with dementia.
Funny story—I was teaching clinical in a local nursing home and accidentally created my one “rescue” scenario! One of my students was encountering a lot of care-resistant behavior and I was trying to assist. The situation was quickly escalating from verbal refusals to more physical acts, like swatting and kicking. I swiftly removed the student from the situation, and we went over to the nurses’ station to quietly discuss alternative approaches. Feeling warm, I removed my lab coat and draped it over one of the chairs. I always wear scrubs when I teach clinical and I like lab coats for the extra pockets, but sometimes these facilities are just too warm to wear layers. After a few minutes of strategizing, we re-entered the room. The resident greeted us with a warm smile and said, “I am so glad to see you. I did not like the other crazy nurse who just left.” I laughed and told her that we would take good care of her. By walking out of her room, removing my lab coat, and returning to her room, I had been transformed into “the nice not-crazy nurse.” I went right along with it, and the student and I were able to complete her care without any fuss.
A Special Thanks
I want to acknowledge the incredible work of the late Dr. Jane Chalmers. She was a researcher and dentist from Australia who was faculty at the University of Iowa in the 1990s-2000s. She passed away much too soon in December 2006 (at age 41), but her research was so productive it was published posthumously for nearly a decade after her death. She conducted several studies designed to help people living with dementia accept mouth care. I owe her a debt of gratitude because I used her work as the foundation for my NIH-funded studies that tested strategies to reduce care-resistant behaviors in nursing home residents with dementia. The strategies she identified and published include the ones described here and in an earlier blog: priming, bridging, chaining, and hand-over-hand. We stand on the shoulders of giants; I stood on the shoulders of a Titan.
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Categories: Alzheimer's Disease Care Partners Caregiving Dementia Refusal Behavior
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.
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