Shifting Your Paradigm in Approaching People with Dementia

Heather Anderson and her husband cared for her grandmother with Alzheimer’s disease and dementia for two and a half years. “Instead of confining,” they say that their experience with the disease allowed them to “grow in ways we never could have imagined.”

Shifting Your Paradigm In Approaching People With Dementia

Read more about their experiences in an excerpt from their book, “Remember I Can’t Remember: Shifting Your Paradigm, Reapproaching Dementia/Alzheimer’s,” below.

Remember, “I Can’t Remember”

Constantly remind yourself that they can’t remember. The seemingly simple task of remembering they can’t remember will cause a paradigm shift. Do not read into it. They really just can’t remember. Take the time to consider what that means.

It means they cannot follow your lengthy explanation of what short-term memory loss is. It means they have lost their ability to manipulate you. They cannot be trained or taught to take their medicine or drink their water. They cannot remember what you just said no matter how loudly or slowly you said it.

Their forgetting does not diminish the previous value of any person, relationship, experience, or thing. We do not want to believe that we are so easily forgotten. We may get resentful and angry. We have an intense need to be acknowledged and remembered. Usually we view it as their anger lashing out with a combative spirit when, at least in part, it may be ours. They simply can’t remember.

How much of the Alzheimer’s and dementia struggle is about us? How much of their struggles come from our anxiety? We need to be willing to move toward the unknown. Accepting this is accepting their loss and our loss. It represents a shift in the relationship that we may not be ready for. That acceptance may be heartbreaking, but it is the starting point for care. Meet them where they are. Enter into their reality. Remember, it is as real to them as ours is to us.

Remember I Can't Remember Book Cover

I believe we are mistaken when we think that our arrival, or our voice, has the immediate power to pull them from a world of ghost-like vapors back to our concrete world. We have to value the unseen and at least accept the powerful effect it has on them. Our flippant disregard for what they experience unfortunately does not make it go away. Their visions are very real to them and create feelings of real joy or real sadness. Listen to them and comfort them. Respect where they are. Do not hesitate to lie. In this situation, lying makes your life and theirs so much easier.

If you are struggling with a moral position, you are going to have to let it go. They are only spending a part of their time in our reality; telling them our truths may actually be cruel and may show an inability on your part to let go. They may not remember the truths you just told them, but the anxiety those truths cause will stick with them. It may be helpful to think of dementia as “dimensia,” meaning a problem with dimensions. At times we may appear to be in contrary dimensions, both having an equal hold. The challenge is to gracefully, or at least effectively, bridge that gap.

Forgive. There is no good time for the onset of Alzheimer’s and dementia. There are often unresolved issues that need to be released. That is the work, the releasing and forgiving. Work on it. Support their dignity. It does matter how they look.

We can’t emphasize enough the power you have as a caregiver. By just obsessively doing the simplest tasks of feeding, hydrating, bathing and knowing them and their routines, you contribute more to their health than any “expert” can. You must be the advocate. Only you will know what is normal. Commit to those tasks, and you are giving the greatest gift you may ever give. Be conscious, and you will receive in equal measure. Do not hesitate to call a doctor. Be conscious of a rapid decline in physical abilities and mental clarity. For the most part, Alzheimer’s and dementia is a relatively slow disease. If you are noticing rapid changes, there may be a problem with their medication mix, oxygen levels or dehydration and/or bladder infection.

Let go of your name and expand your identity. We are afraid to leave our name. We fear leaving the old dynamic of our relationship. Our clinging solely to the roles of the past inhibits the growth and evolution our relationship. We have to trust enough to meet them where they are. Our relationship may shift from one grounded in current events and past experiences to a relationship of souls. That is a great leap. They have great value. However, it may not be obvious to everyone. It is unfortunate or just reality, but you establish the value of your loved one. You are the model. If you are attentive, compassionate and engaged in their well-being, it is much more likely that the doctors, nurses and other family members will be also. Focus on what they are, not what they are not. It is easy to see what they are no longer. Give them the gift of recognizing what they are right now. This is the last stage of a long life.

Contrary to appearances, I believe there is a lot going on. (Receiving care, understanding vulnerability, teaching you, and releasing control.) Present things as their idea…”You mentioned you needed help with your hair” etc. As a caregiver you have to be very creative. In the center of obligation, search for joy and choice and try to work from there.

Pick up a copy of Eric and Heather Andersen’s book, “Remember I Can’t Remember: Shifting Your Paradigm, Reapproaching Dementia/Alzheimer’s,” and let us know what you think in the comments below.

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Please leave your thoughts and comments

  • caregiver lost

    I think this is a reminder I need constantly. I listen to others telling me it is just Dad and I don’t know where the just dad and the dementia is. I will try to meet this obligation of compassion much closer and try and pay more attention to him and forget myself. It truly is selfishness on my part. I don’t want him to forget me so I tend to remind and remind. I will read this daily.

  • Ruth Betts

    It was much easier for me as a nurse, to enter their world, than as a daughter taking of my Mother who had alzheimer’s disease. However, I wish I knew then what I know now about the disease. I know we do the best we can do with the information we have at the time.

  • Light

    This is just a random thought of mine…I have always thought of dementia as faulty wiring….that the wire that connects the soul to the brain is frayed…or not working…my belief is the soul is still there..the unique person…the unique soul…is just a bit trapped…cut off from using the brain as usual…I realize that mixed emotions may spring from this thought….but it’s good for me to get it out there….and I hope comforting to know …that the unique person is still there…just not capable of expressing or remembering things in what we consider a normal way.

  • Eric and Heather Andersen

    Thank you for your comments and insights. We all are struggling with a situation that is universal in it’s diagnosis, but manifests uniquely in every family, presenting its own set of individual challenges. Breaking it all down to a soul level of connection provided some clarity for us. We found that working to let go of the was allowed us to more fully embrace the now.
    Best regards,

    Eric and Heather Andersen

  • Faraz Choudhry

    Dementia is the ultimate test of anyone or any group of people’s character and humility. It’s time to let go the ego and rediscover our own weakness and humanity. We care for others today and others will care for us tomorrow.

  • CheriByGrace

    This article changed my life!!!
    As I was staying with my mom, after her surgery, I got a real good look at just how much she really couldn’t remember! I really believe we can’t truly see the extent of this on a day’s visit. It takes time for,them to let their guards down, or maybe for US to, and to really see how much they really can’t remember. It’s not,a game. It’s not a manipulation. Believe me, some really think it is! And they disrespect the parent for years thinking this way! To me that’s sad. But I understand the other person’s frustration too.
    But more than anything this article taught me how to help my mom so much better! Especially the, “Present ideas as their own” and the things said about how the daily caregiving IS more than enough. Wow! How important the little things are in their world, and they should be, and therefore important to us.
    I learned to not ask mom, “Hey mom, remember when…?” Or especially right after she just said she didn’t remember, or gave me that sideways look, I learned NOT to say, “Mom? Remember last month when…?” Or “last week when…?” Or, “when the doctor said..?”
    I want to say thank you for posting this article. I will be getting this book. And I really hope, after sharing this with my 9 brothers and sisters who generally don’t receive from me, that they WILL receive this. Because this is about mom. And she’s SO worth it and means the world to me!
    Thank you SO much!!

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