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What to Do When People with Dementia Refuse Help and Care

Alzheimers Lewy Body refusing care strategies
What to do when people with dementia refuse help and care

In last week’s blog, I explained why people living with dementia refuse care. In this week’s blog, I explain what to do about it. Read on for strategies that you can use immediately to prevent care-refusal behavior and  strategies to help you manage care-refusal behavior as soon as it happens.

Appearance and Overall Approach

During a recent home visit, one of my nieces took my picture without my knowledge. I was listening intently to something my sister was telling me. The picture surprised me. I looked so serious and somewhat…mean. I was frowning and wrinkling up my forehead. I had no idea I looked like that. This made me think: when I’m working with people with dementia, do I look like this when I’m focused?

Gently smile. Relax your forehead. These two small steps will soften your features and make you appear more relaxed and friendly. People with dementia, especially in the moderate to severe stages, rely more on nonverbal cues—or facial expressions– than spoken language.

Gentle Touch

This strategy is definitely person-dependent. Some people readily accept having their hands gently held and their back gently rubbed. Touch is a powerful communication tool. Touch can be reassuring, like a hug. If you are unsure how the person living with dementia will respond to touch, start with the hands. If the person clasps your hands and smiles, you can try gently rubbing their should and upper back.

Short 1-step Commands

Which direction is easier to follow?

  1. Before going to the fridge to get the butter, hand me the dish near the sink.
  2. Hand me the dish near the sink. Now get the butter from the fridge.

As the dementia gets worse, people with the disease have trouble keeping up with long sentences or explanations.  Remember the shrinking box and messy closet? The first sentence is tough—your brain has to hold onto the first half of the sentence while completing the task in the second half of the sentence. This is like asking you to get a package from your mailbox while holding several dinner plates and two drinking glasses. Something is going to get dropped! The second direction is more direct. You will have more success with using short, 1-step respectful commands/requests or, in some cases, more gestures and pantomime and fewer words. While you are using gestures and pantomime, try to keep smiling and a calm manner. In some cases, if you are doing the activity with your family member, like brushing your hair or eating, you are giving helpful cues to the person with dementia.

Gestures and Pantomimes

Support what you want to say with gestures and pantomime, as if you are playing charades. I will make a “come with me” gesture with my hands. I also NEVER hold or pull someone with dementia. The result is a tug-of-war, and you will lose. Instead, I gently place their hands on my wrists and I walk backwards or side-by-side.  Try it. Also, nod your head and smile when you are getting the response you want.

Make it Vague

Instead of saying, “Let’s go brush your teeth,” try “Let’s go have fun.” Don’t judge, I know it sounds super weird (and creepy). For reasons I have not yet figured out, I have gotten people to the bathroom with the fun sentence.

Encourage Self-care…No Matter How Long it Takes!

One of the best ways to prevent care refusals and resistance is to encourage the person with dementia to perform as much of his or her own care as is safely possible. This is good for several reasons. First, if you start taking over and “doing for” your family member, the person may forget how to do that activity. Once the activity is forgotten, that memory may be gone for good. I talk about maintaining function in another blog—the one about Tony Bennett and Fridge Worms. On the other hand, if you encourage the person with dementia to remain active and perform as much self-care and other activities as possible, you keep the memories “alive.” Another reason is to provide a sense of accomplishment. When I complete a task, I usually feel good. The same goes for people with dementia. The desire to be useful and to have a purpose does not go away, but the outlets for this drive and desire diminish as the dementia gets worse. Also, some of these activities can help the person with dementia reminisce and relive positive memories.

Schedules and Routines

Schedules and routines go hand-in-hand with self-care. Think about your own schedules and routines. I have a very specific morning routine and if it gets messed up, like if I forget to set my alarm and wake up late, the rest of the day seems to go downhill. I will forget to bring the lunch I packed, or worse, walk out the door without my cell phone. My schedule serves as a type of reminder so that I head to work with everything I need for the day.

We use schedules and routines to teach children how to care for themselves—how to make procedural memories. We use schedules and routines to maintain memory. That is, to support memory and function in persons with dementia. Familiar schedules and routines are comforting in a confused, topsy-turvy world. You can also use schedules and routines to help prevent care refusals. One family I knew was having trouble getting mom to take a bath. They began giving her a bath in the evening and entered her reality (more on that in later in the blog) by telling her that everyone was bathing  “before going to church later.”

If you family member needs your help with some activity, your overall approach sets the tone. Make sure you have given yourself and your loved one enough time to complete the activity. Come at or below eye level in an unhurried way. Smile. It also helps to have the area set up for whatever activity you plan to do.

Avoid Elderspeak

Sometimes, the person with dementia may act in a child-like manner. Whatever you do, never talk to the person like he or she is a child. The person with dementia may forget a great deal about him or herself, but these folks will never forget that they are adults. Some caregivers forget themselves and start to use sing-song baby talk. This type of speech is called “elderspeak”  and it will make refusals worse.

Use the Environment to Trigger (Procedural) Memories

In previous blogs, I wroge about memories becoming lost and mixed up using the shrinking box and messy closet examples.  Memories are lost in the reverse order in which they are made. You can use the environment to “pull up” a deep memory. This is called “priming.” For instance, some caregivers try to be efficient and attempt to brush their loved ones’ teeth in the shower or while the person is sitting on the toilet. Did you ever, in your life, brush your teeth while in the shower or sitting on the toilet? Instead, use the environment in a way that makes sense. If you are trying to get your family member to brush his or teeth, for example, help him or her to sit/stand in front of the sink and start the water running.

Ask for Help

All of us want to be needed and to have a job or purpose. Let’s say your loved one refuses to eat, and you know they didn’t eat much dinner last night. You know they need to get something in their stomach. You could “ask for help” by saying, “I made extra. Don’t want the food to be wasted. Can you help me?”

Asking for help can be useful with dressing and undressing: “Can you help me and take off this shirt?”

Chaining

Chaining is starting the activity and having the person with dementia finish the activity. You can use chaining for brushing someone’s teeth—you can start brushing and then guide their hand to take over. Or, you can place your hand over their hand and get the movement going, then remove your hand.

Watch Your “Vibes”

Ever hear of “emotional contagion?” It is the spread of some emotion from one person to another. Yes, just like spreading a cold. There are people who brighten a room just be walking into it. There are others who also brighten up a room…as they go out the door! The human body has nerves whose only job is to “pick up” and send vibrations to the brain. So when someone says, “I don’t get a good vibe about that person,” this is not woohooey new age stuff but legit nerve activity.

After a rough day at work and heading to your “second shift,” or after hearing “Where have you been?” for the 10 millionth time (and you have been RIGHT FREAKING HERE!!!),  it can be a little hard to be chill and keep one’s vibes “in check.” So, go ahead. Scream. Preferably outside or in a pillow or somewhere not likely to result in a phone call to the cops. Personally, I find swearing very therapeutic (not at my loved one!). I go to another room and allow a couple of minutes of St.-George-Carlin-would-be-proud language. Or I call my sister and just go into a profanity-laden tirade which doesn’t hurt anyone (except embarrass her because she foolishly had me on speakerphone as she was walking through a crowded hospital corridor…she just shrugged and told everyone that I had Tourette’s).  If that doesn’t do it, I walk out to my yard and hug an old magnolia tree (after dodging the spiderwebs). Again, I realize that sounds fruit loops but it works for me.

Once I fix my vibes, I’m ready to go back and face the situation. This time out usually results in my loved one having a break (and hopefully forgetting that I was being a butt).

Time Travel and Dementia

People with dementia are literally moving backwards in time, because they are losing the anchor that short-term memories provide. Time gradually loses its structure and meaning. Three minutes can feel like 3 hours to them. When I was caring for Mary, I would pour her a cup of coffee and walk 10 feet to the living room to turn on the morning news. I would turn around and head back into the kitchen to get my cup of coffee. And every morning, Mary would excitedly greet me: “Where did you run off to?” When I replied, “I never left,” she would look at me warily. “You’ve been gone for hours,” she would say, accusingly. I wanted to point to the hot cup of coffee in her hand as evidence that she was wrong, but I knew this approach would result in a hamster-wheel argument. I learned to shrug and say, “I guess I lost track of time, I’m sorry.”

Your family member may  tell you, “I’ve already had breakfast.” Instead of arguing with your family member, or using logic by pointing to the time on the clock, simply go along with it. One way to respond is to say, “Oh, OK. I’m going to make myself some toast because I’m still hungry.”  Then, make the breakfast and serve it to your family member.  If your loved one persists with, “I already ate,” you can respond with, “OK, I made some extra and I don’t want it to go to waste.” You can also add in the “please help me” strategy here.

Entering Their Reality to Avoid Care Refusals: Combining Elements of Truth with Preserving Dignity

When I was teaching clinical in a local nursing home, there was a resident who was a retired attorney. He had early-onset Alzheimers, which meant he was much younger than the other residents—and much stronger! He refused to allow the nursing assistants to remove his soiled clothing (he was incontinent of urine and feces) or to shower him. Two male nursing assistants would literally carry him into the shower and strip off his soiled clothing. It was a bad situation. Talk about triggering a fear response!! This forceful behavior escalated his refusals and left him upset and agitated for hours.

Loving a challenge, I decided to work with him. I tried all of the strategies listed in this blog with partial success. I could get him into the bathroom and could remove some clothing, but then he would have NONE OF IT and would walk out. One morning, I was accompanied by a nursing student who came from a family of attorneys. Before I could say a word, she jumped in. She looked at him and said, “The judge is waiting. Let’s get you ready.”

Holy shit!! The resident jumped out of his chair and my nursing student took him by the hand and led him to the bathroom. Using gestures, pantomimes, and very simple one-step commands, she single-handedly undressed and showered him. Whenever he would start to resist, she would simply repeat, “The judge is waiting in chambers. Let’s get you ready.” Success!

After she was finished with his care, I asked about her approach. She told me that her grandfather, who was the same age as this individual, was a retired judge. He told her stories of putting in long hours working on a case as a young attorney, sometimes pulling all-nighters. This was also a time when attorneys often kept alcohol in their office and would sometimes have a few drinks before crashing on the office couch. Her grandfather always kept fresh shirts and toiletries in the office. This way, if he received an unexpected message that he was expected in a judge’s chambers, he could quickly freshen up so that he didn’t look like he had been working (or drinking) all night. It was considered bad form to show up in the judge’s chambers looking like hell.

“I simply used your ‘entering his reality’ approach, Dr. Jablonski. Somewhere, there are judges sitting in their chambers. Maybe they are waiting for their lunch. Maybe they are waiting for a meeting. I put two sentences together that I suspected would make him want to get cleaned up. I tapped into his old memories, like you are always talking about.”

DAMN!!  This was one of the high points of my teaching career!! This student received an A plus plus that day!

When faced with care refusals, think about your family member’s past life and values. You may be able to come up with a “reason” to do something that is not lying and is something that is important to them. I will go into more ways to apply “Entering Their Reality” when I do a deeper dive (in future blogs) into bathing, mouth care, and medications—common activities that trigger care-refusal behavior.

Bottom Line

These strategies do work, but not always consistently because of factors like tiredness and pain. One day, “entering their reality” solves the problems but not for another day. That day, “chaining” seems to be the way to go. The trick is to keep trying them. Tweak them so that the strategies make sense to your family member. You can tweak the strategies by aligning them with your loved one’s values, pre-dementia personality, and even their spiritual beliefs. You got this!!

Categories: Alzheimer's Disease communication Dementia Lewy Body Dementia Refusal Behavior Understanding Behaviors Vascular Dementia

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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.

2 replies

  1. This, and other related blogs, have been a real eye-opener for me. I cannot thank you enough. It all rings true and a few of your approaches are things I’ve arrived at, by trial and error. (Mostly the latter, LOL). But you explain what the person with dementia is feeling or responding too, which helps me: better understand, be proactive, and be empathetic. You have a great sense of humour – I love “the judge is waiting.”

    The only thing that makes this disease bearable are those moments of joy or humour. Life is essentially ridiculous right? But we can be loving to one another all the same.
    Thank you for your wisdom.

    1. Thank you, Shauna!! If you like the blog, you may love the podcast–Make Dementia Your B*tch is available on all of the major platforms including Spotify, Apple Music, and Audible!

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