Five Tips for Dementia Care Partners

On Saturday, May 9, Beth Nolan, PhD, will offer a guest lecture at The Kenwood by Senior Star on “How to speak Alzheimer’s” from 11 a.m. to 1 p.m. She will discuss brain changes that affect interactions or communication with environments, loved ones and caregivers using an interactive, multi-modal approach. Here, Nolan shares her five tips for caregivers in a guest blog post. 

Five Tips for Dementia Care Partners

Teepa Snow’s Positive Approach™ offers five tips for dementia care partners that can help the caregiving journey.  Those living with dementia didn’t choose this path.   And frankly, we as caregivers didn’t either.  Choosing to make a difference starts by making the choice to try something new.   There is always more to learn when it comes to dementia.  We encourage you to become aware of what you don’t know and then seek further knowledge and new skills you need.  It’s not where you end up with dementia—it is about how you get there.

  1. Breathe – It sounds simple, right? But breathing may be the single most important skill you can develop as a care partner. When you take a look at yourself realize the strain, stress, and constant need to be alert will create the feeling of being in “emergency mode.” Our bodies will experience a “fight or flight” state of being, causing us to hold our breath and tighten our chests.  These physical reactions in our bodies turn off important critical thinking brain ability.

You can counter this “fight or flight” physical response in your body by giving yourself permission to breathe.  Our mothers always told us to take a deep breath and we’ll make better decisions.  Well, she was right. Almost. When very stressed, you might actually need to take two or three breaths.  Can you try that right now?  Take a deep breath in; hold it; and let it out slowly.  Try it a second time and after you roll your shoulders, do you notice how less stiff they are?

Part of the breathing exercise is to help you take an honest moment to recognize you don’t need to have caregiving all figured out.  Take time to look for additional people to partner with in this journey.  Let others help you.  Perhaps someone can stay with your mother while you go to the grocery store?  See if another family member would be willing to research the new geriatric physician you would like to find.  Think about what you might be able to hand off or pass to someone else that would help.  When you take time out and breathe, it is more likely other helpful ideas and opportunities will come to mind.

  1. Go with the flow – When care partners learn more about dementia, they discover it is much more than memory loss. Dementia is a syndrome, or a collection of symptoms and it means four things:

1) At least two parts of the brain are dying.  This means other brain function is also changing.  For example a person’s ability to control their impulses.

2) Dementia can’t be fixed or stopped.   It becomes important to realize that individuals can be symptomatic for a long time (8 to 12 years in some cases).

3) The brain will be constantly changing.   Dementia is caused by a progressive illness.  Care partners will have to change along with the person experiencing dementia.

4) And finally, dementia is terminal… but then, so is life.

Neither the care partner, nor the person living with brain change chose to bring dementia into the relationship.  What is a choice however, is how to live in the relationship and the changes that are happening.  Due to grief, focus will typically become placed on what a person is losing.  Conflicts arise out of what someone can’t do instead of finding how to work with abilities that remain.  Pay attention and notice what clues are being given to you.  What can someone do and what are they attempting to communicate about what they need?  By changing the focus, you will become more adept to go with the flow.

Instead of using logic and correcting mistakes, the goal is to listen and reflect back words or feelings shared.  This will validate a person’s experience or struggle instead of creating further frustration.   “You are home, mom; this is where you live now,” for example may escalate confusion.   Try listening and reflecting instead. “Sounds like you want to go home?  Tell me about your home.” Repeating words increases comprehension of thinking and feelings attempting to be communicated.

Remember, being right doesn’t necessarily translate into a good outcome between two people. But listening, and meeting someone where they are, can.

  1. Greet before you treat – Making connection is a critical step in helping someone living with dementia. While the ability to hold on to new information will become limited, retention of emotional memory remains.  In other words, a person may not remember who you are, but they will absolutely remember how you made them feel.

Imagine for a moment a friendly smiling stranger approaching you and saying, “Do you want to take a shower?”  If you were honest, how might you react?  This is the experience for someone living with brain change.  Consider the difference if you took the time to make a connection first, before expecting someone you barely recognize into your personal space.   Say something nice, for example, that makes them feel good.  You may even want to introduce yourself.

If you can make a positive connection each time you approach someone you are attempting to help, it is more likely the number of good versus bad encounters will begin to change.  With dementia in the picture, the relationship is the MOST critical thing, NOT the outcome of any one particular interaction.

  1. Do with, not to –In our efforts to be helpful, we make others feel controlled.  You have the opportunity as a “caregiver” to become a “care partner” by doing with someone instead of doing to them or arguing with them. They are changing. It’s happening and not by choice.  Could you change, however, to be a better match to what’s happening?

When once capable mothers, teachers, and professionals lose their life roles, identity, and control, even the smallest choice we can offer, gives a wonderful sense of power.  Try holding up the bread and the oatmeal box and ask, “Toast? Or Oatmeal?”  Even if they always had oatmeal, give them the choice.  And if you get a snappy remark “Oh, you know I always have oatmeal.”  A simple reply of, “Oh, yes,” will do.

Any number of opportunities for control occur throughout the day. Pause and wait to see what happens, when you can. Try pointing to the chair, “Betty.  Sit here? Or there?” See if the person you are helping might be able to pull up their own pants, if you give them time, even if you might need to help with the next step such as button or zip for them.

In that moment, you give them the gift of control; acting as their care partner and doing with, not to them.

  1. Learn the art of letting go – Learning to let go is the hardest skill of all. However, letting go of what was will allow you to live in the moment, find humor, tenderness and even joy. When the focus is on loss (lost skills, lost roles, lost identity), we lose sight of what we have.  Just for today, no matter the stage of dementia, focus on what the person you love can do.   Can they decide their own meal at the restaurant? Can they choose their own clothes?  Can they squeeze your hand?

Even near the end, simply being present matters.   Offering the opportunity for a soothing touch, taste, or sound adds a personal quality to life and gives meaningful impact to the still experienced relationship.  To honor the needs of a physical body beginning to shut down is not giving up on someone.  It is, instead, the respect and support a person needs, at the time they need it.  Giving up is when you don’t know what else to do.  Letting go, on the other hand, is realizing the next step and taking it.

Beth Nolan, PhD is the Director of Research and PAC Training for Teepa Snow’s Positive Approach, LLC.  She provides training and care coaching to improve techniques and strategies for families and professionals working or living with dementia or other brain changes throughout the U.S.  Formerly an Assistant Professor of Public Health and the Senior Associate Director for the Evaluation Institute at the University of Pittsburgh’s Graduate School of Public Health, Beth began her work with Teepa in 2013.  She received her Ph.D. in applied gerontology from the University of Kansas and holds master’s degrees in Human Development and Applied Behavior Analysis.  She has worked as a clinical psychologist for older adults with behavioral health issues and intellectual disabilities, and consults with health service organizations providing implementation assistance for behavioral health crisis response, quality improvement initiatives, integrated care practices, and senior living culture change.

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