How to become a better caregiver for your loved one with Alzheimer’s and dementia

“Better” is something that every caregiver wants to be; to provide the best care they possibly can for their loved ones. It is a very overwhelming task, and as the disease process continues the task gets even larger.

I recently completed the 2nd Annual Coping with Dementia Caregivers Conference and one of the items we passed out was the “Ten Essentials” for becoming a better caregiver. It was very well received by the attendees, so I thought I would share this with you here.

The Ten Essentials:
Tips for becoming a better caregiver for
loved ones with Alzheimer’s and dementia

Never ARGUE; instead AGREE.
Never REASON; instead DIVERT.
Never SHAME; instead DISTRACT.
Never say YOU CAN’T; instead DO WHAT YOU CAN.
Never COMMAND or DEMAND; instead ASK or MODEL.
Never say REMEMBER; instead REMINISCE.
Never say I TOLD YOU; instead REPEAT.
Never LECTURE; instead REASSURE.
Never FORCE; instead REINFORCE.

This list of do’s and don’ts is not meant to make you feel bad about what you are doing or have done. It is to give you some insight into changing your communication and interaction with your loved one. He or she is not trying to be annoying or troublesome. They are working from a reality that is different from yours, and they are working with sensory input that is greatly distorted or diminished from what you hear, see, and feel.

With their behaviors, they are trying to tell you what they feel or need. Using patience, compassion, creativity, and even a few detective skills, it is your job to understand where they are coming from. They will be telling you where they are, and for the moment you must try to go there with them.

Where they are may just be a different emotional landscape, but it also may be somewhere else in time. Dementia victims will often revert to a younger and better time in their lives when the world made sense and where they had a greater sense of control.

Let’s look at some scenarios based on the list above, first looking at the rule: Never ARGUE; instead AGREE. Much of what I describe below equally applies to the second rule: Never REASON; instead DIVERT.

It is not uncommon for a loved one to say something like, “Where is Uncle Joe?” referring to a relative who has passed away. You do not respond, “How many times have I told you that Uncle Joe died in 1989?!” This is an outright attack on your loved one’s understand of reality. It will only make them more confused and remorseful.

Rather, say something like, “I have not seen him today. Can you tell me a little more about him? What are some of the things you like about Uncle Joe?” Give your loved one the opportunity to redirect away from worrying about Uncle Joe today, and toward some good memories about who he was rather than where he is.

The question about Uncle Joe is nonsensical and absurd to your reality, and it becomes even more annoying with repetition. It may be very frustrating to listen to the same question over and over, but let me repeat that your loved one is not doing this to annoy you. It is the disease. If they repeat the same question again and again, it is a message to you that this is an important topic for them. You are being told, “I want to go back to the time I enjoyed being with Uncle Joe.” Help them explore this time without dragging them into the present or toward your reality. You might even praise or honor their affection or concern for Uncle Joe.

Now, let’s look at the third rule: Never SHAME; instead DISTRACT.

You would not say, “Oh my lord, you have made a mess of yourself again! Didn’t I ask you only 10 minutes ago if you needed to go to the bathroom?” This is shaming and humiliating, which does nothing to encourage your loved one to help you correct the situation. While ignoring their actual condition, say something like, “I need some help with something really important. Can you come with me and help me out?” Then guide them to the bathroom and take care of the problem, perhaps offering a few more words of praise about how helpful they are being.

Dementia patients often understand that they “don’t fit in,” that they make mistakes, and they don’t like it. Rather they like to be helpful, and they should be given the opportunity to believe they are being helpful as often as possible.

We do not have space here to lay out a scenario example for each of the ten rules, but the principle behind all of them is that the more positive and reassuring you can be, the better your loved one will cooperate.

In closing, let me remind you about the importance of support or networking. You may be a very good and skilled caregiver, but the task is still often overwhelming. This is not a negative thing; it does not mean you are “less than.” It is the reality of your situation, and you should never be ashamed to look for help.

I facilitate a lot of caregiver support groups, and I have found these meetings to be very effective for all involved. The list of Ten Essentials can make a great agenda for caregiver interaction and networking. We all get so fogged in by duty and problems that we often know what to do, but don’t know exactly how to do it at that moment. When you are with other caregivers, try picking out one of the rules and let people discuss examples of how they can apply it. Try a little role play.

With your fellow caregivers, put a little useful mock-drama into your lives in order to better deal with the real drama that can be so frustrating and exhausting.  You may even find it to be fun.

Until next time remember: “We all deserve the best”

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© Debbie Selsavage, 2015