1. 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. 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.
2. 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.
Schedules and routines also help to support memory and function in persons with dementia. Familiar schedules and routines are comforting in a world where things can be confusing. 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 by telling her that everyone was bathing “before church tomorrow.”
3. Overall Approach
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, like in the picture on the right. Notice that the toothbrush and other supplies are out and ready to go.
4. Avoid Elderspeak (baby talk)
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.
5. Use the Environment to Trigger Memories
In one of the other videos, I talked 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. 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.
6. Short 1-step Commands
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? 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.
7. Moving Backwards in Time/Entering Their Reality
Sometimes people with dementia literally move backwards in time. Also, time starts to lose its structure. 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.”
8. Ask for Help
That brings me to the next idea, “ask for help.” All of us want to be needed and to have a job or purpose. Using the breakfast example, you could say, “I made extra. Don’t want the food to be wasted. Can you help me?”
Arguing and logic do not work. It will simply make the situation worse.
Chaining is starting the activity and having the person with dementia finish the activity. Click here to see the chaining video.
10. 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 some where 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).
While blogs like this are helpful, sometimes caregivers need a little more. Click here for information on upcoming webinars and personalized dementia coaching.
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.